Monash 128321
Monash 128321
Monash 128321
NEURODEVELOPMENTAL DISORDERS
June, 2014
Notice 1
Under the Copyright Act 1968, this thesis must be used only under the normal conditions of
scholarly fair dealing. In particular no results or conclusions should be extracted from it, nor
should it be copied or closely paraphrased in whole or in part without the written consent of the
author. Proper written acknowledgement should be made for any assistance obtained from this
thesis.
TABLE OF CONTENTS
Acknowledgments ................................................................................... xi
Abstract ..................................................................................................... 1
ii
4.1.4 Swanson, Nolan & Pelham Checklist – Fourth edition (SNAP-IV) ............................................. 57
4.1.5 Strengths and Weaknesses of ADHD Symptoms and Normal Behaviour Scale (SWAN) ........... 58
4.1.6 Limitations of these measures ....................................................................................................... 59
4.1.7 Use with children and adolescents with ID ................................................................................... 60
4.2 Measures with a focus on attention deficit hyperactivity disorder and/or attentional difficulties
designed for use with children with ID ............................................................................................................ 61
4.2.1 Attention-Distraction, Inhibition-Excitation Classroom Assessment Scale (ADIECAS) ............. 61
4.2.2 Attention Checklist (AC) .............................................................................................................. 62
4.2.3 Limitations of these measures ....................................................................................................... 62
4.3 Measures assessing a range of behavioural and emotional problems designed for typically
developing children.......................................................................................................................................... 65
4.3.1 Behavior Assessment System for Children – Second edition (BASC-2) ...................................... 65
4.3.2 Child Behaviour Checklist (CBCL) .............................................................................................. 71
4.3.3 Children’s Behaviour Questionnaire (CBQ) ................................................................................. 72
4.3.4 Strengths and Difficulties Questionnaire (SDQ)........................................................................... 73
4.3.5 Limitations of measures ................................................................................................................ 74
4.3.6 Use with children and adolescents with ID ................................................................................... 75
4.4 Measures assessing a range of emotional functioning and behaviour disorders developed for children
with intellectual or developmental disabilities ................................................................................................ 77
4.4.1 Aberrant Behaviour Checklist – Community (ABC-C) ................................................................ 77
4.4.2 Developmental Behaviour Checklist (DBC)................................................................................. 78
4.4.3 Nisonger Child Behaviour Rating Form (NCBRF) ...................................................................... 85
4.4.4 Limitations of these measures ....................................................................................................... 87
4.5 Summary .............................................................................................................................................. 88
iii
7.3 Rating scale evaluation ...................................................................................................................... 116
iv
APPENDIX D: PARENT/GUARDIAN CONSENT FORM…………………………………………………..D1
v
List of Figures
Figure 1. Recruitment flowchart for the study. ...................................................................... 101
vi
List of Tables
Table 4.1 Psychometric Properties of Measures with a Focus on Attention-Deficit
Hyperactivity Disorder and/or Attentional Difficulties for Use with Typically Developing
Children.................................................................................................................................... 50
Table 4.2 Psychometric Properties of Measures with a Focus on Attention-Deficit
Hyperactivity Disorder and/or Attentional Difficulties for Use with Children with Intellectual
Disability .................................................................................................................................. 63
Table 4.3 Psychometric Properties of Measures Assessing a Range of Behavioural and
Emotional Problems for Use with Typically Developing Children ......................................... 67
Table 4.4 Psychometric Properties of Measures Assessing a Range of Behavioural and
Emotional Problems for Use with Children with Intellectual Disability ................................. 79
vii
General Declaration
In accordance with Monash University Doctorate Regulation 17 the following declarations
are made:
I hereby declare that this thesis contains no material which has been accepted for the award of
any other degree or diploma at any university or equivalent institution and that, to the best of
my knowledge and belief, this thesis contains no material previously published or written by
another person, except where due reference is made in the text of the thesis.
This thesis includes 3 papers submitted for publication. The core theme of the thesis is the
development of a new rating scale to measure attention, hyperactivity, and impulsivity in
children with neurodevelopmental disorders. The ideas, development and writing up of all the
papers in the thesis were the principal responsibility of myself, the candidate, working within
the Centre for Developmental Psychiatry and Psychology, Southern Clinical School and the
School of Psychological Sciences under the supervision of Associate Professor Kylie Gray
and Professor Kim Cornish. The inclusion of co-authors reflects the fact that the work came
from active collaboration between researchers and acknowledges input into team-based
research.
In the case of Chapters Eight, Nine and Ten my contribution to the work involved the
following:
Signed: …….……………………
Date: …………………………….
viii
List of Publications and Presentations during Candidature
Publications
Freeman, N. C., Cornish, K. M., & Gray, K. M. (2012). Attention and activity
a new attention rating scale for children with intellectual disabilities: The Scale of
Developmental Disabilities.
Freeman, N. C., Cornish, K. M., Taffe, J. R., & Gray, K. M. (2013). The Scale of
Attention in Intellectual Disability (SAID): Factor analysis of a new rating scale for
Developmental Disabilities.
Freeman, N.C., Gray, K. M., & Cornish, K. M. (2014). Evaluation of a new attention rating
Presentations
Freeman, N. C., Gray, K. & Cornish, K. (2012, September). Attention and activity
(Oral Presentation).
ix
Freeman, N. C., Gray, K. & Cornish, K. (2012, July). Development of a new
Presentation).
x
Acknowledgments
Firstly, I would like to extend a special thank you and acknowledgement to my two
supervisors, Professor Kim Cornish and Associate Professor Kylie Gray. The combination of
your skills, knowledge and experience has given me such a solid grounding for future life in
research and academia. Kim, your optimism and encouragement for me to “go for it” every
step of the way has helped inspire me, especially during those times when it felt like the end
was not in sight. Kylie, your common sense and advice has always kept me grounded and
reminded me that while it is important to shoot for the stars, you still need to keep your feet
on the ground. I am also so grateful for the support and encouragement you have given me
when I have presented my findings at conferences. Having you there in the audience was
enormously comforting. When other students said to me “I wish she was my supervisor” it
made me feel both proud and very fortunate to have the support of both of you.
I would also like to acknowledge the Apex Foundation for Research into Intellectual
Disability for helping to fund my study. The money provided by you enabled us to employ a
research assistant one day a week for six months to help me with data collection. Having a
research assistant was invaluable, especially having someone with the skill to help me
complete the cognitive assessments. I am certain that having a research assistant also
contributed to my excellent return rate of rating scales. Many studies that involve teachers are
plagued by low response rates, but ours was over 90% which I know in part was due to the
follow-up we were able to do by having that extra person to help out.
A special acknowledgement must go to three members of my family who have always been a
source of inspiration, comfort and support: my Dad, who has always supported my career
choices and has celebrated every small milestone that I have achieved throughout my Ph.D;
my sister, Selena, who has been an amazing support in every possible way (especially after
the birth of my son) and provided some much needed distraction and humour to my world
when I needed a break from the books; and my Auntie Pamela, who was the first person in
my family who I witnessed showing real discipline to study and higher learning. It helped set
a benchmark for me in my approach to my studies in future years.
I would like to acknowledge the research assistant we employed for the project, Ms Kristina
Clarke. You came with all the skills of a psychologist, having nearly completed your Masters.
It was so terrific to have someone to help out who I had complete confidence in. I knew that
anything I asked you to do would be done well, and I hope you benefitted from the
experience of completing cognitive assessments with children who are low functioning, as it
comes with challenges that are beyond the administrative and interpretive.
I would also like to acknowledge other staff within the Centre for Developmental Psychiatry
and Psychology. Dr John Taffe for his assistance with my statistical analyses, Dr Helen Jeges
for her insights into some unusual cognitive profiles, and Dr Caroline Mohr for her detailed
and insightful feedback on the first draft of my scale.
Thanks must also go to my fellow students located over at Monash Medical Centre. Caroline,
your “drop ins” several times a day were always welcomed and provided a break from the
isolation that I sometimes felt in the office, especially in the early days. Beth, your quiet and
friendly presence meant that I always looked forward to the office days when you were there.
As well as our chats about research and analysis, our shared love of Masterchef and cats were
xi
topics that provided a nice break from reading journal articles, writing, and making phone
calls. Anna, your encouragement and empathy at times when we were both struggling to get
more participants helped me stay optimistic.
Thank you to the Department of Education and Early Childhood Development and the
Catholic Education Office Melbourne who allowed me to approach principals when I was
recruiting participants for my study. I do not think I would have achieved a decent sample
size without being able to recruit through schools. I must also thank community support
groups Amaze and Down Syndrome Victoria who allowed me access to their registries so I
could contact and mail out information to families to inform them about our study.
A special thank you must be extended to all the classroom teachers who took the time to
complete the rating scales and return them to me. Completing one could take up to 20
minutes, so it was no mean feat that some teachers completed 3 or 4 of them, in their own
time, without any incentive or reward for doing so. Your generosity of time and your interest
in our study was so appreciated – my thesis could not have been completed without your
input. To those principals who gave their teachers time release to complete the rating scales –
I extend a special thank you.
Finally, my thanks go to the families and the children who participated in our research study.
I would particularly like to acknowledge those children who completed a cognitive
assessment as part of the data collection process. You taught me new and creative ways to
keep children engaged during an assessment, and gave me new insights into the array of
abilities and skills that you have; sometimes skills that cannot be measured using an
assessment tool.
xii
To my wonderful husband, Matthew,
for his unwavering love, support and constructive criticism;
to my son Michael, our wonderful little surprise who came near the end of my Ph.D;
and to my Nan and my late Pa. When I told them I was contemplating changing thesis topics,
they said I would be crazy if I didn’t take the opportunity to work with Kim.
They were right.
xiii
Abstract
Difficulties with attention, impulsivity, and hyperactivity are thought to be at least as
common, if not more so, among children with intellectual disability (ID) as they are in
typically developing children. Although rating scales exist that are able to measure ADHD
symptomatology, few if any can reliably measure the range and severity of behaviours within
items for children operating within the intellectually disabled range, the lack of replicability
of the factor structure, and/or that they have not been used or validated in ID populations.
This study aimed to develop and evaluate a new teacher completed rating scale to measure
behaviours related to hyperactivity, impulsivity and inattention that were specific to children
with ID, including a review of existing rating scales, diagnostic manuals, and observational
and descriptive data from existing research. These behaviours were organised into a rating
scale: the Scale of Attention in Intellectual Disability – Teacher version (T-SAID). Focus
group discussions were held with nine health professionals (six psychologists and three
paediatricians) and nine teachers who worked in special schools. Comments and feedback
from these discussions were used the further refine the scale.
Phase 2 involved a community survey of 176 teachers who completed the T-SAID for
children aged 5 to 13 years from mild to severe/profound ID. Diagnoses of the children
included autism spectrum disorder (ASD), Down Syndrome (DS) and idiopathic ID. The
results indicated that the T-SAID is a reliable and valid measure for use with children with
ID. It had excellent internal consistency and strong test-retest reliability. It had strong
convergent validity with corresponding subscales on the Conners Third edition and the
1
Developmental Behaviour Checklist – Teacher version and moderate divergent validity with
the total score on the Vineland Adaptive Behaviour Scales – Second edition. The T-SAID
also had good content validity and good discriminant validity across children with a diagnosis
of ADHD and those who did not. An exploratory factor analysis of the T-SAID yielded a four
Communication.
When comparing the T-SAID total score across degrees of ID, regression analyses revealed
with those who had mild or moderate ID, and these behaviours were significantly more
severe. There was also a significant negative effect for age, suggesting that as children age
their ADHD symptomatology decreases, with fewer behaviours exhibited and these
behaviours being less severe. Cross-syndrome comparisons suggested that children with ASD
idiopathic ID. Children with ASD also had significantly greater difficulties with behaviours
that make up the Verbal Communication subscale than children with DS or idiopathic ID, and
This study has successfully developed a reliable and valid measure for identifying ADHD
symptomatology in children with ID. Further research would be needed to establish its utility
in clinical, school and research settings. Integrating this scale with neuropsychological and
clinical research holds exciting promise for enhancing our understanding of the nature of
2
CHAPTER 1 DEFINING TYPICAL AND ATYPICAL
ATTENTION AND ACTIVITY
3
The ability to pay attention and to maintain appropriate levels of activity across
situational contexts are essential aspects of successful everyday functioning. Both attention
and activity are complex constructs that can be observed and measured at both the cognitive
and behavioural levels. Attention can be conceptualised by its various facets (e.g., sustained,
divided, selective) but activity is somewhat more difficult to define being a concept that is
generally defined by its excess (hyperactivity) or paucity (inactivity, or at its most extreme,
catatonia). This chapter examines attention and activity at both the cognitive and behavioural
levels, as well as summarising the research of both the typical development of attention
across childhood and adolescence, and atypical development at the behavioural and clinical
with paying attention to detail and making careless errors. In the classroom, it may also
manifest in failure to complete a task or not carrying out instructions or requests. It is also
related to organisational difficulties such as lack of time management, submitting work that is
At the cognitive level, attention has been defined by processes that were initially
regions (Mirsky, Anthony, Duncan, Ahearn, & Kellam, 1991). This concept has been revised,
however, and rather than being a unitary process it is now widely believed that attention
4
covers a multitude of processes including selective, sustained, and shifting attention (Cornish
relevant, and ignore other sources of distraction. While earlier models proposed that selective
attention occurred either through early selection (a limited amount of incoming information
being processed while other inputs are excluded by a filter; e.g., Broadbent, 1958) or late
selection (analysing as much input as possible and selecting the most important information
as late in the sequence as possible; e.g., Deutsch & Deutsch, 1963), more recent findings
offer a compromise between these two conflicting views. One such explanation is the load
theory which suggests that there are variations in the point that information is selected and
the degree of processing carried out on unattended information depending on the task (e.g.,
Lavie, Hirst, de Fockert, & Viding, 2004). This infers that selection is not all-or-nothing but
instead depends on other aspects of the task, such as the perceptual load required by the
incoming information and the current load already being held in the control processes
holding attention when a significant event or warning signal occurs (phasic arousal) and the
ability to maintain concentration over time (tonic arousal; Cornish & Wilding, 2010).
Signal detection theory is one popular explanation for the difficulty experienced in
sustaining attention over time. This theory assumes that signals must be detected against a
background of random disturbance called “noise” and that performance varies across
individuals and time depending upon factors such as physiological state (e.g., fatigue),
experience, and expectations (Tanner & Swets, 1954). Response in the presence or absence of
a signal results in four different categories: correct detection (stimulus present, response
present), missed signal (stimulus present, response absent), false alarm (stimulus absent,
5
response present), and correct rejection (stimulus absent, response absent). In low-input
situations, few targets appear in the presence of few other distractions. Individuals tend to
miss more targets over time not due to a decline in the efficiency of processes detecting the
input, but because they become more conservative in the amount of evidence required before
registering a signal detection (Stroh, 1971). In high-input situations, perceptual processes are
likely to become more inefficient over time. High-input situations involve tasks that are
demanding (e.g., when input is continuous and target detection is frequent) and have a high
Shifting attention is the ability to divide attention flexibly and adaptively between
different tasks. Many theories have been suggested to explain this process. The original filter
theory suggests that there is a central bottleneck in information processing which limits dual-
task performance, and that individuals are only able to process one stream of information at a
switching between tasks. Others have posited that attention is a flexible system which can
allocate resources to different tasks provided that the total load is not too high (e.g.,
Kahneman, 1973). A study conducted by Allport and colleagues (1972) extended this further,
suggesting that resources could be shared even when conducting complex tasks. No
consensus has been reached on explaining the process of shifting attention. More recent
evidence has suggested that individuals can demonstrate time sharing between tasks in some
conditions, but debate continues as to how this process takes place (Styles, 2006).
The development of attention typically begins as early as infancy, with the infant’s
attention span and capacity to concentrate increasing as they develop into a toddler, child, and
6
behaviours in their play such as stacking blocks (Ruff & Capozzoli, 2003). This can be
enhanced further by adults who may encourage sustained attention by observing a child
playing with an object and then encouraging further play with it by showing the child a
different function or use (e.g., observing a child handling a bell and then the adult rings it to
Although only limited research has examined the typical developmental of sustained
attention in children, the majority of researchers agree that it develops rapidly through
childhood up to the age of 10 years, with gradual improvements thereafter as they move into
adolescence (Betts, McKay, Maruff, & Anderson, 2006; Klenberg, Korkman, & Lahti-
Nuuttila, 2001; Manly et al., 2001; Rebok et al., 1997). A recent study supported this
developmental trajectory, but suggested that sustained and selective attention functions were
closely related in early childhood before subdividing in later childhood (Steele, Karmiloff-
Smith, Cornish, & Scerif, 2012). Researchers attempting to explain the underlying neural
basis of sustained attention have suggested that this occurs through gradually increasing
myelination of the central nervous system. They argue that it is not until early adolescence
that the reticular formation (the area of the brain responsible for attention regulation)
Selective attention also increases with age as children become better at focusing on a
given task while ignoring distractions, and as they enhance their capacity to multi-task.
Development is believed to transition in the second and third years of life from attention
influenced by novelty of objects and events towards more cognitive factors such as planning
and goal-setting (Ruff & Capozzoli, 2003). It continues to develop at a steady rate up until
the age of approximately 10 years (Klenberg, et al., 2001; Manly, et al., 2001; Rebok, et al.,
1997; Steele, et al., 2012). As children move into adolescence, the rate of development
plateaus but their capacity continues to steadily increase (Klenberg, et al., 2001). The
7
importance of distinguishing a child’s attention to structured tasks as opposed to self-directed
play or physical activity has also been emphasised (Tandon, Si, Belden, & Luby, 2009). A
future attentional capacities than their ability to attend to activities of their own choice.
(Barkley, 1997a; Logan, Schachar, & Tannock, 1997) with a deficiency in this area being
described as poor impulse control or impulsivity. The ability to inhibit responses has been
2000). In one study of Finnish children aged 3 to 12 years, inhibition developed rapidly up to
the age of 7 years and then levelled off thereafter (Klenberg, et al., 2001). In another study,
approximately 12 years of age (Bunge, Dudukovic, Thomason, Vaidya, & Gabrieli, 2002).
the different tasks used. The above findings do, however, suggest an increase in development
throughout childhood which reaches maturity by adolescence if not earlier. This skill
decreases later in life (B. R. Williams, Ponesse, Schachar, Logan, & Tannock, 1999), thus
Although excess in activity is one of the most widely researched behaviour problems
in childhood, the developmental precursors are still yet to be fully understood, thus making it
difficult to define “normal” levels of activity in early child development. One theory suggests
that normal activity levels relate to the capacity to self-regulate (Barkley, 1997a). Self-
regulation and behaviour inhibition, and relates to the individual’s capacity to delay
responding to events that elicit emotional responses, especially those that are negative such as
anger. The greater the capacity for delaying response, the more likely it is that the individual
8
can gather the necessary information to understand the different facets of an event. This has
the potential to moderate their initial internal emotional response and modify their external
display of emotion to others. Between 3 and 4 years of age, children begin developing the
ability to use coping mechanisms such as self-generated strategies to regulate sadness and
anger (Cole, Dennis, Smith-Simon, & Cohen, 2009). Typically developing young children
become increasingly more capable of self-regulation as they move into preschool and early
primary school, and these skills continue to develop through adolescence (Eisenberg & Sulik,
2012; Rothbart & Bates, 2006). The ability to self-regulate behaviour has also been reported
to predict lower maladjustment, lower peer aggression, and greater social competence in
childhood and adolescence (Eisenberg & Sulik, 2012; Olson, Lopez-Duran, Lunkenheimer,
hyperactivity disorder
most cultures, although a few academics have questioned whether it is a social construct
limited to Western culture (e.g., Amaral, 2007; Anderson, 1996; Timimi & Taylor, 2004).
the individual’s functioning across different environments e.g., at home and at school.
Although diagnosis can be made at any age, the behaviours must be present before a child
Psychiatric Association, 2000; Polanczyk, de Lima, Horta, Biederman, & Rohde, 2007;
Willcutt, 2012) and attention difficulties – generally excluded from prevalence studies –
impact upon an even greater number of young people (Ramtekkar, Reiersen, Todorov, &
9
Todd, 2010; Tennant & Conaghan, 2007). This statistic represents a significant proportion of
individuals, and the difficulties associated with attention can have a significant, negative
impact throughout childhood, adolescence and into adulthood, particularly if they do not
receive optimal treatment and intervention (e.g., Barkley, Fischer, Smallish, & Fletcher,
The conceptualisation and diagnostic criteria for ADHD have evolved with successive
editions of the Diagnostic and Statistical Manual of Mental Disorders (DSM; American
Psychiatric Association, 1968, 1980, 1987, 1994, 2000, 2013) and the International
Classification of Diseases (ICD; World Health Organization, 1992) which can present
DSM-II (American Psychiatric Association, 1968), with a focus on the symptoms related to
motor disturbance. In the DSM-III (American Psychiatric Association, 1980), the condition
was labelled attention-deficit disorder (ADD) and was defined in two separate domains of
inattention and hyperactivity. Therefore, it was possible to be diagnosed with ADD while
only satisfying the criteria in one of these domains. The DSM-III-R reconceptualised ADD
into a single diagnostic category, but also added impulsivity to the criteria. The DSM-IV-TR
and DSM-5 (American Psychiatric Association, 2000, 2013) conceptualise ADHD as a two-
both domains. This has resulted in three possible subtypes but impairment must be observed
in more than one setting. While previously an exclusionary criteria, the DSM-5 allows for the
10
The ICD-10 is the latest in a series of classifications endorsed by the World Health
Organisation that can be traced back to the 1850s. This system has two separate diagnoses
that ADHD can be classified under: disturbance of activity and attention and hyperkinetic
more severe form of ADHD. The ICD-10 (World Health Organization, 1992) criteria for both
disorders are more stringent than the DSM-5 (American Psychiatric Association, 2013),
(hyperactivity, impulsivity and inattention) and all criteria must be met across at least two
situational contexts. Unlike the DSM-5, the ICD-10 lists mood and anxiety disorders as
exclusionary criteria.
The DSM-5 (American Psychiatric Association, 2013) describe the specific criteria
regarding age of onset, subtypes, and number of symptoms required to meet the threshold for
a diagnosis of ADHD. The DSM-5 has increased the age of onset from seven to 12 years,
responding to research calling for this change (e.g., Kieling et al., 2010; Polanczyk et al.,
2010). It is also supported by research suggesting that inattentive symptoms are identified at a
later age than hyperactive symptoms (Lahey et al., 1994) which had called into question the
(Waschbusch, King, & Gregus, 2007). The DSM-5 has decreased the number of symptoms
required for diagnosis in adolescents and adults from six to five, consistent with suggestions
Although these changes have been met with some concerns about increased
prevalence or false positives (Frances, 2010), recent longitudinal birth cohort studies have
attempted to address these issues. One study found that increasing the age of onset to 12
years had a negligible impact on existing prevalence rates, correlates, and risk factors
11
(Polanczyk, et al., 2010). Another study suggested that after a 5 year follow-up, the age when
symptoms first appeared was recalled as being significantly higher (i.e., 6 to 18 months later)
for both parent and self-report. In 46% of these cases, while still meeting symptom and
impairment criteria for ADHD, their increased reported age of onset would mean that they
would no longer have been diagnosed with ADHD (Todd, Huang, & Henderson, 2008) under
the DSM-IV-TR. This finding would appear to support the increased age of onset criteria, but
also questions whether it is appropriate in all cases. Adolescents and adults may have
difficulty recalling symptoms in the earlier stages of their life, or, as the above study
suggests, may have altered recall of the age when their symptoms first appeared when asked
at a later date. The implication is that this may actually exclude some people (who meet
symptom and impairing criteria) from diagnosis due to their inability to meet the age of onset
criteria for ADHD were questioned for very young children. One study suggested that
9 months in preschool children (Kollins et al., 2006). It has also been suggested that
modifications may be needed to increase the sensitivity of these criteria in 3 and 4 year old
children (Tandon, et al., 2009). For example, descriptors such as often makes careless
mistakes may not be applicable as many young children are rarely placed in situations or
given tasks where such behaviours could be observed. Similarly, other descriptors such as
has difficulty organising tasks or activities may reflect behaviours that would be observed in
many young children, and therefore the discriminant validity between a child with attention
difficulties and one without would be low. The issues raised in these studies persist in the
DSM-5 (American Psychiatric Association, 2013) which has retained symptom persistence at
6 months, and contains similar behavioural descriptors to the DSM-IV-TR. At the present
12
time, a determination about which criteria would need to be modified to assist with
It is well established in the literature that boys are diagnosed with ADHD more
frequently than girls. It has been suggested that this may be because the diagnostic criteria for
ADHD are more descriptive of boys rather than girls (Ohan & Johnston, 2005; Staller &
Faraone, 2006). Others have suggested that girls are more likely to present with inattentive
type which are less likely to be referred for treatment (J. Biederman et al., 2002) and that
children with these inattentive, internalising behaviours may be more difficult to identify.
In response to these observations, it has been suggested that the diagnostic criteria
may need to be changed so that separate classifications exist across genders (Rohde, 2008).
One study has gone so far as to outline possible “female sensitive” items that could be used
when diagnosing ADHD and other clinical diagnoses in females (Ohan & Johnston, 2005).
This view has not, however, met with universal agreement. Several studies have
suggested that ADHD symptoms do not differ across genders (Monuteaux, Mick, Faraone, &
Biederman, 2010), even when making comparisons across countries (Nøvik et al., 2006) and
when using a non-referred community sample (J. Biederman et al., 2005). Monuteaux and
colleagues (2010) stated that the differences in presentation are due to contrasts in comorbid
Biederman, et al., 2005). Another study made gender comparisons across subtypes but while
few differences were noted, group assignment relied on parent report of symptoms rather than
a clinical diagnosis so these conclusions should be interpreted with caution (Graetz, Sawyer,
& Baghurst, 2005). Further research is needed to examine the possibility of gender
differences, and the interaction of comorbid psychopathology and ADHD subtypes, using
13
1.3.2 Theories of ADHD
One of the most common theories of ADHD suggests that its symptoms arise from a
deficit in executive functioning. Executive functioning has been defined as a set of cognitive
processes that maintain a problem solving set in order to attain a goal (Welsh & Pennington,
1988). It represents a “top down” processing model whereby incoming information is held in
the working memory while simultaneously integrating knowledge about the current context.
These two processes aid in the individual’s decision-making process about the best strategy
or action to take in a given situation (Willcutt, Doyle, Nigg, Faraone, & Pennington, 2005).
Under this theory, ADHD symptoms arise due to deficits relating to specific executive
functioning processes: namely response inhibition and working memory (Barkley, 1997b;
Gioia, Isquith, Guy, & Kenworthy, 2000; Pennington & Ozonoff, 1996). A meta-analytic
review of studies that examined the validity of this theory found that children and adolescents
with ADHD exhibited significant impairment in all areas of executive functioning when
compared with typically developing children. This was observed in both clinic and
community samples, even after controlling for variables such as diagnostic criteria used,
al., 2005). The authors suggested that the most impaired areas of executive functioning were
in the areas of response inhibition, working memory, planning, and vigilance which
supported the conclusions drawn in many of the studies included in their analysis. They also
emphasised, however, that the effect sizes were insufficient to suggest that weaknesses in
executive functioning explained the symptoms of ADHD in all individuals. Other researchers
have suggested that working memory impairments may be present in children with the
inattentive subtype, but reported little or no evidence of such deficits within the hyperactive
14
relates to the behavioural tendency to prefer small, immediate rewards as opposed to larger,
delayed rewards (Antrop et al., 2006; Sonuga-Barke, Taylor, Sembi, & Smith, 1992), but that
this behaviour may be reduced with the addition of stimulation during the delay interval
(Antrop, et al., 2006). In settings where children are unable to choose between immediate and
delayed rewards (such as during a classroom activity), they may systematically attempt to
reduce the perceived time spent in “delay” (that is, the time spent on the current activity
before moving on to another). This may be achieved by the child attending to other aspects of
their environment in an attempt to make it more interesting and absorbing, which may be
1992). A recent study found that delay aversion was related to inattentive symptoms rather
than hyperactivity symptoms (Paloyelis, Asherson, & Kuntsi, 2009), although others have
suggested that the opposite is true (Solanto et al., 2001). Despite these conflicting findings, it
does raise the possibility that delay aversion cannot be generalised to all children with
attended to, filtered, and processed in the brain through encoding, retention and retrieval (G.
A. Miller, 1956). In children with ADHD, it is proposed that information processing deficits
limit their ability to understand incoming information. Research has focused on specific areas
such as visual (Weiler, Bernstein, Bellinger, & Waber, 2002) and central auditory processing
disorders (CAPD; Jerome, 2000; Riccio & Hynd, 1996). Studies of visual processing
disorders among children with ADHD have primarily focused on performance in visual
search tasks. One study comparing children with ADHD inattentive type and/or dyslexia
found that the children with ADHD inattentive type (with or without dyslexia) had greater
difficulties with visual processing after controlling for inattention (Weiler, et al., 2002).
Studies examining CAPD have been inconsistent, with some suggesting that it is common in
15
children with ADHD (Riccio & Hynd, 1996; Riccio, Hynd, Cohen, & Hall, 1994), whereas
others have suggested it is more commonly associated with learning disabilities (Gomez &
Condon, 1999; Weiler, et al., 2002). The variation across studies may be partly related to a
While none of the theories discussed above – or any other theories that have been put
forward – provides the single explanation of the cause of ADHD, all of them enhance our
understanding of its symptomatology. Indeed, many researchers support the position that
Sergeant, Geurts, Huijbregts, Scheres, & Oosterlaan, 2003; Sonuga-Barke, 2005). This would
suggest that a single theory or cause is improbable, and that a combination of cognitive and
motivational models may enhance our understanding of ADHD and other developmental
country that the study was conducted, is that a greater number of males are diagnosed
compared with females (Polanczyk, et al., 2007; Polanczyk & Jensen, 2008; Staller &
Faraone, 2006). It should be noted, however, that the ratio of males to females is thought to
be lower in children with predominantly inattentive ADHD (Lahey, et al., 1994) and those
Research has suggested that the severity and frequency of some ADHD symptoms has
an inverse relationship with age. This has been reported irrespective of whether syndromatic
(i.e., still met full diagnostic criteria) or symptomatic persistence (i.e., continued to present
with impairing symptoms but failed to meet full diagnostic criteria) were examined (J.
Biederman, Mick, & Faraone, 2000; J. Biederman et al., 2006; Faraone, Biederman, & Mick,
16
2006; J. C. Hill & Schoener, 1996). These studies have suggested that as children get older,
impulse control improves and level of hyperactivity declines (J. Biederman, et al., 2000;
DuPaul, Power, Anastopoulos, & Reid, 1998; Fischer, Barkley, Smallish, & Fletcher, 2002),
although inattentive behaviours appear to persist over time (Barkley, 2006c; J. Biederman, et
Although the underlying cause of ADHD is not yet known, there are a number of
contributing factors that may exacerbate symptoms. Genetic factors such as disorders which
are known to present with attention difficulties as part of their behavioural phenotype (e.g.,
family history of ADHD or attentional difficulties (Bennett, Levy, & Hay, 2007; Hay,
Bennett, Levy, Sergeant, & Swanson, 2007) can increase the likelihood of a child meeting the
criteria for this diagnosis. Neurological factors such as pre-natal exposure to illicit drugs
(Milberger, Biederman, Faraone, Guite, & Tsuang, 1997) or smoking (Milberger, et al., 1997;
Thapar et al., 2003), exposure to certain central nervous system infections (e.g., encephalitis;
Gau, Chang, et al., 2008), traumatic brain injury (McKinlay, Grace, Horwood, Fergusson, &
MacFarlane, 2010), and neurotoxin exposure (e.g., lead poisoning; Hussain, Woolf, Sandel,
& Shannon, 2007; Mendola, Selevan, Gutter, & Rice, 2002), can also result in a greater
likelihood of being diagnosed with ADHD. While family dysfunction is no longer believed to
cause ADHD, it has been suggested that it may contribute to the exacerbation or amelioration
of symptoms in an individual with this diagnosis (S. B. Campbell & Ewing, 1990).
Research examining adults with ADHD has consistently reported that this diagnosis
can have a significant, negative impact on the individual throughout childhood, adolescence,
and into adulthood, particularly if they do not receive optimal treatment and intervention.
Children and adolescents with a diagnosis of ADHD can face significant difficulties in their
17
everyday lives, such as lower academic achievement (Barkley, et al., 2006; Polderman,
Boomsma, Bartels, Verhulst, & Huizink, 2010), less popularity among peers (Hoza, et al.,
2005; Waschbusch & Sparkes, 2003), friendship difficulties (Barkley, 2006b; Normand,
Schneider, & Robaey, 2007), and lower self-esteem (Barkley, 2006b; Graetz, Sawyer, Hazell,
Arney, & Baghurst, 2001). Negative outcomes that have been reported in adults with a
current and/or childhood diagnosis ADHD have included lower occupational status
(Mannuzza, Klein, Bessler, Malloy, & LaPadula, 1993), fewer close friendships (Barkley, et
al., 2006), greater frequency of alcohol consumption (Barkley, Fischer, Smallish, & Fletcher,
2004; Greenfield, Hechtman, & Weiss, 1988), increased likelihood of involvement in adverse
driving outcomes such as car accidents and traffic violations (Thompson, Molina, Pelham, &
Gnagy, 2007), and illicit substance dependence or abuse (J. Biederman, et al., 2006;
Mannuzza, et al., 1993; Nigg et al., 2005). One study by Greenfield and colleagues (1988),
however, reported that negative life outcomes were associated with only current moderate to
severe ADHD symptoms, whereas those with residual or no symptomatology as adults had
outcomes that were similar to the control group who had no history of an ADHD diagnosis.
al., 2007), with comorbid diagnoses additively contributing to the severity of negative life
outcomes. In other studies, however, these diagnoses were not controlled for in the analyses
(J. Biederman, et al., 2006; Mannuzza, et al., 1993) so it is possible that adults with comorbid
disruptive behaviour disorders may have different outcomes to those adults with ADHD
with reported conditions including conduct disorder in children and adolescents (August,
18
Realmuto, MacDonald, Nugent, & Crossby, 1996; Barkley, 2006b; Smalley et al., 2007),
antisocial personality disorder in adults (J. Biederman, et al., 2006; Fischer, et al., 2002) and
anxiety in children, adolescents and adults (Bloemsma et al., 2013; Bowen, Chavira, Bailey,
Stein, & Stein, 2008; CME Institute of Physicians, 2007). While oppositional defiant disorder
has also been reported in children and adolescents (August, Realmuto, Joyce, & Hektner,
1999; August, et al., 1996; Posner et al., 2007; Smalley, et al., 2007), one study suggested
that it is more common among those with hyperactive/impulsive and combined subtypes, and
less common in children with the inattentive subtype (Kadesjo, Hagglof, Kadesjo, &
Gillberg, 2003).
19
CHAPTER 2 ISSUES OF COMPLEXITY IN DIAGNOSING
20
This chapter will review some of the complexities encountered by clinicians when
disability in some countries; Department of Health, 2001; World Health Organization, 2007)
as any individual with significant limitations in both adaptive behaviour and intellectual
functioning in terms of their conceptual, social and practical skills, with an age of onset
before 18 years. Some people with intellectual disability (ID) have a known etiology such as
exploration of some of these diagnoses and syndromes). For 30-50% of children, however,
there is no organic cause (Percy, 2007) and this is believed to account for many individuals
with mild ID (Volkmar, Dykens, & Hodapp, 2007). It has been suggested that a combination
of familial (i.e., a family history of lower intellectual ability; Iarocci & Burack, 1998) and
environmental factors (e.g., lack of oxygen at birth; Harris, 2006; Mendola, et al., 2002) may
increase the likelihood of being diagnosed with ID, but these are only possible contributing
Some researchers have questioned the origin of inattentive symptoms among children with
ID, while others have suggested that attention difficulties may be related to their cognitive
deficits rather than being a comorbid diagnosis (Antshel, Phillips, Gordon, Barkley, &
Faraone, 2006; Guerin, Buckley, McEvoy, Hillery, & Dodd, 2009). The guidelines in the
diagnosed if the deficits exhibited were significantly disruptive and/or inappropriate for the
21
child’s developmental level, but provided very little guidance on how to make this
determination (Antshel, et al., 2006). This limitation has carried over in the DSM-5
(American Psychiatric Association, 2013) which also does not provide any further guidelines
Difficulties may also arise in determining the child’s mental age when attempting to
ascertain whether the behaviours exhibited are significantly inappropriate (Barkley, 2006a;
Schaughency & Rothlind, 1991), particularly in children with severe or profound ID. Some
researchers have suggested that once correcting for mental age, there is a lack of strong
evidence for the presence of attention difficulties in children with ID (Burack, Evans,
Klaiman, & Iarocci, 2001). Other researchers, however, have suggested that there is no need
to correct for mental age when considering a child’s level of hyperactivity, and that the
McAuliffe, 1997; Pearson & Aman, 1994). Handen and colleagues (1997) found no
difference in symptom severity in the majority of analyses when using either chronological or
mental age. It should be noted, however, that the study conducted by Pearson and Aman
(1994) used the Peabody Picture Vocabulary Test to determine mental age, which may have
distorted the potential correlations between mental age and hyperactivity. Difficulties related
to identifying the mental age of some children, confusion about whether to use mental or
chronological age when considering behaviours, and difficulties in conceptualising the term
Diagnosing ADHD among children with ID can also be problematic due to the issue
of diagnostic overshadowing bias. This term refers to the tendency of clinicians, in the
presence of ID, to regard accompanying mental health issues as less salient and specific (Jopp
& Keys, 2001; Mason & Scior, 2004). It has been suggested that this bias also exists with
22
attention difficulties, with clinicians tending to perceive these behaviours as being part of
having ID rather than as a distinct comorbid problem (Deb, Dhaliwal, & Roy, 2008). A recent
and growing body of literature, however, suggests that children with comorbid ID and ADHD
form a distinct subgroup, and that some children who have ID display few or no difficulties
Two recently published diagnostic manuals have attempted to address these issues:
the Diagnostic Criteria for Psychiatric Disorders for use with adults with Learning
Diagnostic Manual - Intellectual Disability (DM-ID; P. Lee & Friedlander, 2007). Both
recognise the limitations of the ICD-10 (World Health Organization, 1992) and DSM-IV-TR
(American Psychiatric Association, 2000) in making diagnostic decisions when a person has
ID, and appreciate that psychiatric conditions may present differently among adults within
this group. The two diagnostic manuals do contain some differences, however, in their
dimensional disorder, namely hyperactivity, impulsivity, and inattention. It suggests that the
diagnosis of ADHD should be made based on the presence of behaviours in all three domains
but impairment must be observed in more than one setting and be persistent over time. The
DC-LD also contains two distinct diagnoses, depending upon whether the person has known
childhood onset (the behaviours were present before the age of seven) or unknown age of
onset. The unknown age of onset category acknowledges the possible lack of available
development from the individual or their family. It does emphasise, however, that the
history. The DC-LD lists mood disorders and drug-induced psychoses as exclusionary
23
criteria, and similar to the DSM-5 (American Psychiatric Association, 2013) it allows autism
One of the limitations of the DC-LD (Royal College of Psychiatrists, 2001) is that its
diagnostic criteria reflect symptomatology in adults, and therefore the behaviours may not be
readily applicable to children and adolescents. It is also unclear why behaviours in all three
made. Available research does not seem to suggest that individuals with ID are more likely to
present with symptoms in all three domains. It would seem more useful to diagnose ADHD
based on the presence of behaviours in one or more domains, resulting in diagnostic subtypes
2013).
The DM-ID (P. Lee & Friedlander, 2007) also recognises ADHD as a comorbid
disorder in individuals with ID. In developing their diagnostic criteria, the authors contend
that as the DSM-IV-TR criteria for ADHD were based on observed behaviour, few
modifications were needed for individuals with ID. Further to this, the editors of the DM-ID
contend that differential diagnostic criteria were not required to account for degree of ID
(Fletcher, Loschen, Stavrakaki, & First, 2007).The only major change suggested by the
impulsivity, the informant should consider the child’s behaviour compared with peers of
comparable mental and chronological age, and not younger typically developing children of
comparable developmental age. They provide some common clinical examples of inattention
and hyperactivity to assist the clinician. Similar to the DC-LD (Royal College of
Psychiatrists, 2001), they have relaxed the age of onset criteria (i.e., before the age of 7 years)
and noted the acceptability of formulating a diagnosis even in the absence of written
developmental history.
24
The DM-ID (P. Lee & Friedlander, 2007) conceptualises ADHD in the same manner
allows for a diagnosis to be made based on the presence of behaviours in one or both domains
combined) but impairment must be observed in more than one setting and be persistent over
time. They stated that caution must be exercised when making an ADHD diagnosis and
emphasised that the behaviours must result in clinically significant impairment in social,
inattention and not just ID. The authors did not, however, go into further detail about how
this distinction should be made or identify the symptomatic threshold for clinically significant
impairment. Consistent with the ICD-10 (World Health Organization, 1992), the DM-ID
listed mood disorders, drug-induced psychoses and autism spectrum disorder as exclusionary
criteria.
Although these two manuals contain some differences in their diagnostic criteria,
namely whether all three behaviours (impulsivity, hyperactivity and inattention) need to be
present to make a diagnosis and their exclusionary criteria, both publications represent a
ADHD) among people with ID. Future research in this area may result in greater consensus
across the DM-ID (P. Lee & Friedlander, 2007) and DC-LD (Royal College of Psychiatrists,
2001).
25
CHAPTER 3 COGNITIVE AND BEHAVIOURAL
PHENOTYPES OF ATTENTION AND ACTIVITY IN
CHILDREN WITH INTELLECTUAL DISABILITY
26
Initially thought to be a homogenous group, research in this area suggests that
differences in attention and hyperactivity may exist in children with intellectual disability
depending on their cognitive and behavioural phenotypes (see Cornish & Wilding, 2010 for a
comprehensive review) and that there are divergent trajectories in the development of these
behaviours (e.g., Cornish, Scerif, & Karmiloff-Smith, 2007; Scerif, Longhi, Cole, Karmiloff-
Smith, & Cornish, 2012). In this chapter, inattention and hyperactivity/impulsivity are
examined among children with idiopathic (unknown cause) intellectual disability and across
four neurodevelopmental disorders where ADHD symptoms have commonly been studied:
autism spectrum disorder, Down Syndrome, Fragile X Syndrome, and Williams Syndrome.
While the majority of studies have used typically developing children as a comparison group
(either matched for chronological or mental age), a limited number of cross syndrome studies
are also described which provide a more meaningful and complete picture of these difficulties
more so, as the prevalence among typically developing children (Neece, Baker, Blacher, &
Crnic, 2011; Royal College of Psychiatrists, 2001; Seager & O'Brien, 2003). Studies have
reported prevalence estimates from 4% to 70% of children with ID meeting the criteria for
ADHD (Dekker & Koot, 2003; Feinstein & Reiss, 1996; Hastings, et al., 2005; Lindblad,
Gillberg, & Fernell, 2011). Similar to sampling issues in research examining the prevalence
of ADHD in typically developing individuals (Polanczyk & Rohde, 2007), it has been
concluded that the variance in the estimates of ADHD in populations with ID is due to use of
samples that do not allow direct comparisons to be made such as: convenience samples;
27
clinical samples where comorbid conditions are more likely to be identified; and samples
including children with syndromes where attention difficulties are a common feature such as
Fragile X Syndrome. Inconsistencies in prevalence estimates may also have arisen as some
studies did not provide reliable information on how ID and/or ADHD were diagnosed, or
they included children who were in the borderline range of intellectual functioning. The
studies do however demonstrate that a substantial proportion of children with ID present with
Kusel, Cuddy, & Taylor, 2005), and another with individuals ranging from mild to profound
ID (Tonge & Einfeld, 2003). Some studies, however, have suggested the trend of decline may
differ in children with ID. A longitudinal study suggested that the decline in hyperactive
symptoms starts later in children with ID than in children who are typically developing
(Einfeld, Tonge, Gray, & Taffe, 2007) and a cross-sectional study suggested that children
with ID showed a larger decrease in attention problems from age 6 to 18 compared with
typically developing children (de Ruiter, Dekker, Verhulst, & Koot, 2007). The inclusion of
children with borderline intellectual functioning in this sample makes it difficult to be certain
that this trajectory would apply to children strictly within the ID range. Further research is
needed to support the finding that hyperactivity decreases with age and whether it mirrors the
trend observed in typically developing children with ADHD (J. Biederman, et al., 2000;
DuPaul, et al., 1998; Fischer, et al., 2002), or whether it follows a different trajectory.
In a study comparing ADHD symptoms across degrees of ID, O’Brien (2000) drew
association between the prevalence of ADHD and degree of intellectual disability, with the
proportion increasing dramatically in the groups with moderate (25%) and severe (29%) ID.
28
A comparative study conducted in children and adolescents also suggested that hyperactivity
symptoms increased with severity of ID (Rojahn et al., 2010), although given half the sample
had missing data for degree of ID, the generalisability of these findings is unclear. The
findings of these studies do, however, suggest that ADHD symptoms are common not only in
children with ID, but in adolescents and young adults as well. Further research would be
Several early studies used observational data to describe the behaviours associated
with ADHD among children with ID. These studies suggested that ADHD symptoms were
higher in children with ID compared with those who were typically developing matched by
chronological age (Epstein, Cullinan, & Gadow, 1986; Fee, Matson, & Benavidez, 1994).
Two studies conducted by Handen and colleagues (1994, 1998) observed children with ID in
classroom settings and attempted to be more specific about the behaviours related to attention
difficulties. Their first study found that those meeting the criteria for ADHD were more
fidgety and less likely to stay on task during individual (but not group) activities, less
interested during group activities, and more restless during either individual or group
activities (Handen, et al., 1994). In their second study the children who met the criteria for
ADHD were more likely to engage in vocalisations during play (such as humming or talking
to oneself) and played with a greater variety of toys for shorter periods of time. They were
also less likely to stay on task during an academic activity and more likely to impulsively
touch toys located on a nearby table when they had been explicitly instructed not to do so
(Handen, et al., 1998). The authors also included a group of children who met the criteria for
both ADHD and conduct disorder, but no significant differences were reported across the
ADHD and ADHD/conduct disorder groups. Given that neither of these studies included
typically developing children with ADHD, it is unclear whether these behaviours are unique
29
All of these studies had shortcomings in their methodology. They all used a rating
scale that had not been developed for use with children or adolescents with ID (Conners
Rating Scales; Conners, 1989). Use of this rating scale could impact on the validity of the
results as it may have misrepresented children with ID as having more severe symptoms than
actually occurred within this group. For example, it contains items that are developmentally
inappropriate for children with ID such as Fails to complete assignments. This behaviour
could be endorsed by teachers for many children with ID, when assignments may rarely if
ever be given to children functioning at this level. Further, this behaviour may be observed
irrespective of the presence of comorbid ADHD. Two of the studies (Epstein, et al., 1986;
Fee, et al., 1994) identified ADHD in children by using a checklist completed by teachers and
teacher aides rather than a formal diagnosis. It should also be noted that these studies used
criteria from previous editions of the DSM (American Psychiatric Association, 1980, 1987).
Changes to the diagnostic criteria make it difficult to draw direct comparisons between
children diagnosed with ADHD in these studies and those being diagnosed in the present day.
children with ID. Two studies reported that children with ID and ADHD had significantly
greater difficulties compared with those who had ID alone in selective attention but no group
differences were observed in sustained attention (Melnyk & Das, 1992; Pearson, et al., 1996).
A possible explanation for these differences in attentional processes is that selective attention
was considered a more cognitively demanding process that increased the information-
Studies comparing children with ID with typically developing children matched for
mental age have yielded inconsistent findings that are difficult to interpret. The use of
different age groups and a variety of tasks make direct comparisons across studies difficult.
The inclusion of children with borderline intellectual functioning in the ‘ID group’ may have
30
also diluted potential observed differences (Baker, Neece, Fenning, Crnic, & Blacher, 2010;
Henry & MacLean, 2002; van der Molen, van Luit, & Jongmans, 2007).
Lastly, emerging research from genetics has suggested that copy number variants
and adolescents with ADHD and ID (N. M. Williams et al., 2010). This study drew upon
individuals aged 5 to 17 years from the United Kingdom and Iceland, and found that children
with ADHD and ID had 5.69 times the average number of CNVs compared with a typically
developing control group (although it should be noted that psychiatric data was not available
for this group, and therefore it is possible not all individuals in this group would be defined as
typically developing). Children with ADHD but without ID also had an elevated number of
CNVs (1.68 times), therefore suggesting that children with ADHD had a significant excess of
understanding genetic risk variants in ADHD if these results are replicated in future studies.
with a number of known causes of ID including autism spectrum disorder, Cri Du Chat
Syndrome (also known as 5p-), Down Syndrome, Fragile X Syndrome, velocardiofacial (also
known as DiGeorge or 22q11 Deletion Syndrome), and Williams Syndrome (Cornish &
Wilding, 2010; Dykens, 2000). Recently it has been suggested that it may not be the disorders
themselves, but rather the gene deletions common across disorders, that may result in
attention difficulties (Scharf & Mathews, 2010). These authors suggested that this might
occur in combination with genetic and environmental factors, but their position still needs to
Four diagnoses with ID and ADHD symptoms as a common part of their presentation
are described below. While attempts have been made to describe the profile of each group,
31
these conclusions are only preliminary and must be interpreted with caution due to a number
of constraints: a) most studies recruited children and the findings may not necessarily
measured using different instruments making direct comparisons difficult; c) the floor effects
reported in some studies mean that the abilities for some children could not be measured
(even when using simple measures developed for children who cannot yet read such as the
Day-Night Task; Diamond & Taylor, 1996; Hooper et al., 2008) and therefore differences
may not necessarily be representative of all children in that syndrome group; and d)
measurement of ID was often imprecise and used screening instruments rather than
intellectual impairment.
behaviour (American Psychiatric Association, 2013). Prior to the 1990s, the prevalence of
autism was estimated to be approximately 4.7 per 10,000 whereas recent research has
reported a median estimate of 62 per 10,000 for all pervasive developmental disorders (or 1
in 160 children; Elsabbagh et al., 2012). Approximately 70 to 80% of children with ASD also
have severe cognitive delays with many functioning in the moderate to severe range of
intellectual disability (Fombonne, 2005). In this subsample, the median prevalence estimate
increases to 17 per 10,000 (Elsabbagh, et al., 2012). Studies have consistently reported a
greater number of males diagnosed with ASD compared with females, although the disparity
32
every female (Fombonne, 2005). The ratio of males to females is markedly lower among
children with ASD and ID, particularly at the severe to profound level where the ratio is 2
The DSM-5 has changed its diagnostic criteria to allow ASD and ADHD to be made
as comorbid diagnoses. Previously ASD was one of the exclusionary criteria for ADHD in
both the DSM-IV-TR (American Psychiatric Association, 2000) and ICD-10 (World Health
Organization, 1992). Despite this only recent change, children, adolescents, and adults
presenting with symptoms that satisfied the diagnostic criteria for both disorders have been
reported since the 1990s (e.g., Ghaziuddin, Tsai, & Alessi, 1992; Yoshida & Uchiyama,
2004). Academics and practitioners alike recognised the utility of a comorbid diagnosis if the
individual satisfied the criteria for both disorders (Frazier et al., 2001; Goldstein &
Schwebach, 2004; Holtmann, Bolte, & Poustka, 2005; Reiersen, Constantino, & Todd, 2008;
Rohde, 2008; Simonoff et al., 2008), and studies anecdotally reported that psychologists and
neurologists were making this dual diagnosis and disregarding the diagnostic guidelines as a
result of these convictions (Ghaziuddin, Welch, Mohiuddin, Lagrou, & Ghaziuddin, 2010;
(Ghaziuddin, et al., 2010; Rommelse, Franke, Geurts, Hartman, & Buitelaar, 2010). This has
been reported in both clinic-based (Frazier, et al., 2001; Gadow, DeVincent, & Pomeroy,
2006; Goldstein & Schwebach, 2004; Hartley, Sikora, & McCoy, 2008; Hattori et al., 2006;
D. O. Lee & Ousley, 2006; Leyfer, Folstein, et al., 2006; Sturm, Fernell, & Gillberg, 2004;
Witwer & Lecavalier, 2010) and population-based samples (Keen & Ward, 2004; Simonoff,
et al., 2008).
33
Research attempting to identify the behavioural phenotypes of inattention and
hyperactivity in children with ASD has been inconsistent. Several studies have suggested that
inattention (Klin, Pauls, Schultz, & Volkmar, 2005; D. O. Lee & Ousley, 2006; Sinzig,
Walter, & Doepfner, 2009; Yoshida & Uchiyama, 2004) while comparative studies have
suggested that inattention is observed in children with ASD irrespective of their level of
cognitive functioning (Estes, Dawson, Sterling, & Munson, 2007; Konstantareas & Stewart,
2006; Mahan & Matson, 2011). Comparative studies have reported that hyperactivity is more
severe in children with ASD and ID (Estes, et al., 2007), while others have reported similar
severity across children with high functioning autism and those with ASD and ID (Kaat,
Lecavalier, & Aman, 2013; Lecavalier, 2006; Mahan & Matson, 2011). Recent studies have
also noted age and gender differences, with one study suggesting that males with high
functioning autism have greater levels of hyperactivity than females (May, Cornish, &
Rinehart, 2013) and another suggesting that increasing age is associated with lower levels of
It should be noted, however, that several of these studies had shortcomings in their
research designs. Several of the comparative studies had mixed samples of children with
ASD and ID and those with high functioning autism (D. O. Lee & Ousley, 2006; Mahan &
Matson, 2011; Sinzig, et al., 2009). This made the sample sizes of each group smaller and
thus reduced their ability to generalise to specific groups or to children with ASD in general.
The study by Estes and colleagues (2007) drew their conclusions from parent (primarily
mother) reports which were not confirmed by clinical evaluation or observations. These
findings would need to be replicated in larger samples and with information obtained from
34
A limited number of neuropsychological studies have examined the cognitive
phenotype of children with ASD. They have reported that children with ASD had greater
and adolescents after controlling for mental age and IQ (Burack, 1994). Sustained attention
appears to be an area of strength, even when compared with children who were typically
developing (Garretson, Fein, & Waterhouse, 1990; Johnson et al., 2007). Selective attention
has been identified as being comparable to (Iarocci & Burack, 2004) or better than (Jarrold,
Gilchrist, & Bender, 2005; Joseph, Keehn, Connolly, Wolfe, & Horowitz, 2009) their
typically developing peers. Christ and colleagues (2007; 2011) conducted two studies
examining inhibitory control among children with high-functioning autism. They found that
the children with autism experienced difficulties in some areas of inhibitory control when
Down Syndrome is one of the most common genetic syndromes causing ID. It is
caused by a third copy of chromosome 21 (trisomy 21) with three genetic subtypes: 95% are
portion of chromosome 21 to other chromosomes, usually chromosome 14; and 1-2% are
mosaics, where both trisomy 21 and normal cell lines occur in the same individual
(McInerny, Adam, Campbell, Kamat, & Kelleher, 2009). The prevalence of Down Syndrome
births in Victoria, Australia has declined over the last 20 years, primarily due to an increase
in cases diagnosed prenatally which have resulted in termination of pregnancy. Each year,
between 45 and 60 babies are born with Down Syndrome in Victoria, with an overall natural
occurrence of approximately 1 in 650 live births (Collins, Muggli, Riley, Palma, & Halliday,
2008). This decline in prevalence is similar to rates reported in the United Kingdom (J. K.
Morris & Alberman, 2009) but contrasts with studies conducted in Europe and the United
35
States where the prevalence has either remained relatively stable (Loane et al., 2013) or has
increased (de Graaf et al., 2011; Shin et al., 2009) over the same period of time.
Syndrome
have yielded conflicting results. Earlier studies reported conservative estimates of between 4
and 8% (Dykens, 2007; McCarthy & Boyd, 2001), similar to that of typically developing
children (Willcutt, 2012) while a more recent study reported a prevalence rate of 43% with
children being diagnosed by a paediatric neurologist (Ekstein, Glick, Weill, Kay, & Berger,
2011). The small sample sizes, symptom identification (current versus retrospective), and
Studies examining the behaviour phenotype have reported that children with Down
Syndrome have greater levels of inattention compared with children who are typically
developing (Cornish, Steele, Monteiro, Karmiloff-Smith, & Scerif, 2012; Nygaard, Smith, &
Torgersen, 2002; van Gameren-Oosterom et al., 2011). Older studies have reported that
hyperactive symptoms were more frequently observed in boys with Down Syndrome
compared with girls, or compared with boys who were typically developing (Royal College
of Psychiatrists, 2001), but that these symptoms decreased in adolescence (Stores, Stores,
Fellows, & Buckley, 1998). Recent research has also suggested that children with Down
compared with typically developing controls (Cornish, Steele, et al., 2012), but when
compared with children and adolescents with other neurodevelopmental disorders, their
severity was significantly lower (Einfeld, et al., 2007). Taken together, this research suggests
that children with Down Syndrome have difficulties with inattention and hyperactivity, but
36
they appear to decrease in adolescence and these symptoms are less severe than children with
identify a unique attention ‘signature’ or profile of individuals with Down Syndrome. Two
Anker, Woodhouse, & Atkinson, 2013), and reaching a level comparable to that of typically
developing children matched for mental age (Cornish, Scerif, et al., 2007). In the area of
selective attention, toddlers with Down Syndrome were reported to perform similarly to their
typically developing peers (matched for mental age) on a task requiring them to touch large
circles on a screen in the presence of smaller distractor circles. In childhood, however, they
performed significantly worse than typically developing children or children with Fragile X
Syndrome on a task requiring them to circle particular items on a map within a time limit.
abilities with toddlers performing similarly to their typically developing peers (matched for
mental age), but demonstrating a deterioration in selective attention skills in childhood before
improving again in adulthood. The conclusions drawn in these studies were however based
on small, cross-sectional samples; longitudinal studies with larger sample sizes are needed to
approximately 1 in 2500 males and females worldwide (P. J. Hagerman, 2008), and
approximately 8665 people in Australia (L. Brown, 2010). It is the most common hereditary
cause of ID in males, but the level of cognitive impairment is more variable in females as
they possess one X chromosome with the gene mutation and one without (Cornish, Gray, &
37
Fragile X Mental Retardation-1 (FMR1) gene located near the end of the long arm of the X
chromosome (Cornish et al., 2008). This FMR1 gene is “turned off” in affected individuals
constellation of strengths and weaknesses that can affect individuals across their lifespan.
particularly in males (Alanay et al., 2007; R. J. Hagerman, 2006), they do not exhibit the
typical global deficits characterised by those with ID. Their unique ‘signature’ of clinical and
cognitive strengths and difficulties differentiates them from other developmental disabilities
(Cornish, Turk, & Hagerman, 2008). In some areas, their reported deficits are similar to their
peers who have ID whereas on other tasks their performance is similar to children matched
for mental age (Cornish et al., 2004). Specifically, children with Fragile X Syndrome are
reported to have strengths in vocabulary (van der Molen et al., 2010), recognising visual
details in faces (Turk & Cornish, 1998), and recalling meaningful verbal information (Munir,
Cornish, & Wilding, 2000a). They may however exhibit deficits in the areas of recalling non-
meaningful information (Munir, et al., 2000a) and pragmatic language (Cornish, Sudhalter, &
Turk, 2004). They may also exhibit difficulties with social interaction and reciprocity similar
to those seen in children with ASD (Einfeld, Tonge, & Turner, 1999), although it has been
suggested that the functions of these behaviours may serve very different purposes across the
two diagnoses (Cornish, Turk, et al., 2008). Approximately one third of all children with
Fragile X Syndrome are thought to have ASD as a comorbid diagnosis (R. J. Hagerman,
2006).
Syndrome
inattention, impulsivity and hyperactivity that are consistent with ADHD (Hatton et al., 2002;
38
Royal College of Psychiatrists, 2001; K. Sullivan et al., 2006). A family survey examining
behaviours were rated as a significant problem in 84% of males and 67% of females, and
hyperactivity was rated as a significant problem in 66% of males and 30% of females (Bailey,
difficulties in Fragile X Syndrome. An early study reported that boys with Fragile X
with those with ID, although levels of hyperactivity were similar (Turk, 1998). Another early
study of females with Fragile X Syndrome suggested that they had significantly higher
hyperactive symptoms compared with a control group of girls with other neurodevelopmental
disorders. Further, girls with Fragile X Syndrome and ID had significantly higher levels of
hyperactivity than those with Fragile X and average intelligence (Lachiewicz & Dawson,
1994). There is some evidence to suggest that ADHD symptoms do not decrease with age in
children with Fragile X Syndrome (Cornish, Turk, et al., 2008), although a longitudinal study
of adolescents suggested that this decrease may happen later (i.e., between 16 and 19 years;
Einfeld, et al., 2007) than it does in typically developing children with ADHD (e.g., J.
A large number of studies have examined the cognitive phenotype of children with
Fragile X Syndrome. Studies examining attention difficulties have reported that sustained
attention is a comparative strength (Cornish, Scerif, et al., 2007; Munir, Cornish, & Wilding,
2000b; K. Sullivan et al., 2007), although their performance is significantly lower than their
typically developing peers both in childhood (Cornish, Cole, Longhi, Karmiloff-Smith, &
Scerif, 2013; Scerif, et al., 2012), and adulthood (Cornish, Munir, & Cross, 2001). Selective
attention is an area of greater weakness compared with sustained attention, with moderate
39
difficulties observed in childhood (Munir, et al., 2000b) which are proposed to persist into
Difficulty with inhibitory control has also been identified among individuals with
Fragile X syndrome (Cornish & Wilding, 2010; Loesch et al., 2003). In a study by Sullivan
and colleagues (2007), boys with Fragile X Syndrome were compared with typically
developing children matched for mental age. Results suggested that while response inhibition
was similar across the two groups at the beginning of the task, they diverged significantly
over the 3 minute duration, and by the end of the task the boys with Fragile X Syndrome
were experiencing significantly greater difficulties with inhibitory control. They also
suggested that boys with Fragile X Syndrome who met diagnostic criteria for ADHD
hyperactive subtype had significantly more difficulties with response inhibition over time
compared with those who did not meet criteria, although this was based on teacher ratings
and not clinical diagnoses. The findings of this study support a proposed developmental
trajectory of inhibition difficulties that seem to appear in infancy (Scerif, Cornish, Wilding,
Driver, & Karmiloff-Smith, 2004), persist into childhood (Cornish, Scerif, et al., 2007;
Hooper, et al., 2008; Scerif, Cornish, Wilding, Driver, & Karmiloff-Smith, 2007), and later
into adulthood (Cornish, et al., 2001). Cornish and colleagues (2004) have suggested that this
inhibitory control deficit may contribute to some of the behaviours consistent with ADHD
such as impulsivity. They conceded however, that this is only the initial step in understanding
the difficulties with inattention and hyperactivity experienced by some children with Fragile
X Syndrome.
sequence of genes on the long arm of chromosome 7 (Kaplan, Wang, & Francke, 2001). It is
a relatively rare disorder with the prevalence estimated to be around 1 in 20,000 (C. A.
40
Morris & Mervis, 1999), although a more recent estimate has suggested it is more common at
a rate of 1 in 7,500 (Stromme, Bjornstad, & Ramstad, 2002). This syndrome is not usually
although not all have ID (Bellugi, Lichtenberger, Jones, Lai, & St George, 2000; Mervis &
John, 2010). Their personality is characterised as being hypersocial (Jones et al., 2000) with
an excessive display of empathy (Kaplan, et al., 2001) and use of verbose, florid language
(Kaplan, et al., 2001). Similar to children with Fragile X Syndrome, they do not exhibit the
typical global deficits characterised by those with ID, and have a distinctive behavioural and
cognitive profile. They have comparative strengths in the areas of processing eye gaze and
facial expressions (Riby, Doherty-Sneddon, & Bruce, 2008), but weaknesses in executive
functioning (Rhodes, Riby, Park, Fraser, & Campbell, 2010) and visuo-spatial construction
tasks (Pani, Mervis, & Robinson, 1999). Their verbal thinking and reasoning skills develop at
a faster rate than their nonverbal abilities. The discrepancy between these two areas appears
to get wider with age, although their verbal ability remains significantly below age
Syndrome
with Williams Syndrome (Dodd & Porter, 2009), with one brain imaging study suggesting
that these difficulties were correlated with structural differences in grey/white matter
morphology (L. E. Campbell et al., 2009). Prevalence estimates are scant, but two studies
have suggested that ADHD symptoms are present in 65 to 100% of children and adolescents
(Leyfer, Woodruff-Borden, et al., 2006; Rhodes, Riby, Matthews, & Coghill, 2011).
41
An examination of the behavioural phenotype suggests that inattention is more
frequently reported than hyperactivity (Leyfer, Woodruff-Borden, et al., 2006), with some
Martelli, Tavano, & Borgatti, 2011). The limited research available suggests no significant
gender differences in the diagnosis of ADHD among children with Williams Syndrome,
although a trend towards a higher proportion of males has been reported (Dodd & Porter,
The limited number of studies makes it difficult to determine whether the behavioural
Williams Syndrome. High rates of inattentive and hyperactive symptoms have been reported
by parents (Mervis & Klein-Tasman, 2000; Rhodes, et al., 2011; Rhodes, et al., 2010). A
cross-sectional study has suggested that hyperactivity prevalence decreases with age and
conversely, inattentive symptoms increase with age (Leyfer, Woodruff-Borden, et al., 2006),
while an Australian longitudinal study found that ADHD symptoms decreased with age more
markedly in adolescents with Williams Syndrome than those with other neurodevelopmental
disorders (Einfeld, et al., 2007). Earlier findings from this longitudinal study reported that
parents were significantly more likely to endorse the items overactive and short attention
span on the Developmental Behaviour Checklist, although whether these children actually
met the criteria for ADHD was not explored (Einfeld, Tonge, & Florio, 1997; Tonge &
Einfeld, 2003).
Several studies have also examined the cognitive phenotype but these have been
limited to studies of toddlers. One study suggested that sustained attention is an area of
strength, with toddlers with Williams Syndrome performing as well as typically developing
controls (J. H. Brown et al., 2003). Selective attention, however, has been identified as an
area of comparative weakness (Cornish, Scerif, et al., 2007; Scerif, et al., 2004). Brown and
42
colleagues (2003) further suggested that attention difficulties do not emerge until later in
development among individuals with Williams Syndrome. They speculated that as children
with Williams Syndrome develop, increasing demands are placed on their cognitive skills.
These interactions place a greater burden on attentional capacity which then manifest as
attention difficulties in later childhood and adulthood. Further studies are needed in order to
confirm this speculation, and to explore the developmental trajectory of attention and
suggested that children and adolescents with Down Syndrome generally have fewer ADHD
symptoms compared with those with ID (Einfeld, et al., 2007; Turk, 1998), Fragile X
Syndrome (Einfeld, et al., 2007; Turk, 1998), ASD (Einfeld, et al., 2007), or Williams
Syndrome (Cornish, Steele, et al., 2012; Einfeld, et al., 2007; Papaeliou et al., 2012). Further,
a longitudinal study suggested that ADHD symptoms decline slowly through adolescence
into early adulthood across neurodevelopmental disorders, and that this decline is greater in
males than females (Einfeld, et al., 2007). ADHD symptoms have also been compared in two
studies of children with ID, Down Syndrome and ASD. Both studies found that children with
ASD had more severe hyperactivity and impulsivity than the other groups (Bradley & Isaacs,
2006; Hastings, et al., 2005), but there were no differences for inattention (Bradley & Isaacs,
2006).
a new direction in understanding children with attention difficulties, as they attempt to tease
out aspects of attention across diagnostic groups. These studies suggest that attention
difficulties in children with ID are not homogenous, and that differences may exist depending
on the child’s behavioural phenotype (Vicari & Carlesimo, 2006). Further, they suggest that
43
while some attention difficulties may appear similar at the behavioural level, this does not
infer that they operate in identical ways at the cognitive level (Cornish & Wilding, 2010).
Two related studies examined inhibitory control in boys with Fragile X and Down
Syndromes, and typically developing children matched on mental age classified as either
poor or good attenders (as measured by the ACTeRS; Ullman, Sleator, & Sprague, 1984).
Their findings suggested that boys with Fragile X Syndrome had significantly greater
difficulties with inhibitory control compared with boys with Down Syndrome or typically
developing boys, irrespective of whether they were identified as poor or good attenders
across syndromes. A study of toddlers suggested that the visual sustained attention of those
with Down Syndrome was significantly shorter than those with Williams Syndrome or
controls matched for mental age (J. H. Brown, et al., 2003), but a more recent study of
slightly older children (aged 3 to 6 years) found no differences across groups (Breckenridge,
et al., 2013). Auditory sustained attention was also identified to be stronger in children with
Down Syndrome than those with Williams Syndrome (Breckenridge, et al., 2013).
The conclusions drawn above are highly speculative given that cross-syndrome
studies are limited. Those studies that have been conducted generally compared either one or
two syndromes with a typically developing group, and most contained small sample sizes.
Studies examining sustained attention, selective attention, and inhibition across ages and
syndrome groups suggested that the development of attention is not linear and that it is
important to examine performance at different ages to gain further information about the
developmental trajectories across and within syndromes (Cornish & Wilding, 2010;
Karmiloff-Smith, 2009). Further research across a greater number of syndrome groups, both
longitudinal and cross-sectional, is needed to yield more conclusive evidence regarding the
44
development of attention and the differences across known and idiopathic causes of ID. More
45
CHAPTER 4 CURRENT CHECKLISTS AND RATING
46
The use of rating scales and checklists to identify behaviours characteristic of ADHD
can be used to assist with diagnosis (Chan, Hopkins, Perrin, Herrerias, & Homer, 2005). In
some studies this has been the only method of identifying and classifying ADHD (e.g.,
Gunter, Arndt, Riggins-Caspers, Wenman, & Cadoret, 2006) and therefore the diagnostic
potential for response bias by the respondent(s) and the diagnostic validity of the measures
used. The generally accepted diagnostic procedure advocates a multi-informant approach that
involves obtaining information from the parents, teachers, and the child if possible (Barkley,
Issues of inter-observer agreement are often an issue, with variation across teacher
and parent observations reflected in the low inter-rater reliability of many rating scales and
checklists (Barkley, 2006c). Some have suggested that low inter-rater reliability should be
expected as different behaviours may be observed across different settings (van der Ende,
1999). Alternatively, reliability may differ due to the way behaviour is defined by the
observer. For example, an item such as fidgety may be rated by one individual as occurring
sometimes but by another as occurring often, as observers may have different perspectives,
tolerance levels, and thresholds for reporting behaviour (Reid & Maag, 1994; van der Ende,
1999). A third alternative is that a teacher may be more attuned to identifying atypical
behaviour due to their exposure to many children in their classroom and across their career,
whereas a parent may be accustomed to their child’s behaviour and may perceive problems as
being less severe, or being of no concern at all (K. Sullivan, et al., 2006).
Despite the many rating scales and checklists available to measure ADHD and
children and adolescents with ID, and even fewer have been specifically developed for this
47
population. This chapter will review the different rating scales that measure ADHD
symptomatology, their psychometric properties, and their reliability and validity for children
and adolescents with ID. With the exception of the Conners (whose recently released third
edition limits its inclusion in independent studies; Conners, 2008), only studies examining the
most recent edition of each rating scale will be included in this review.
The framework used to determine the inclusion and suitability of the scales in our
review was determined by selecting those that have been used extensively in studies to screen
for ADHD symptoms in both population-based samples and in atypical samples of children.
Further, we included some lesser known scales that have been developed for children with ID
given their relative scarcity. The most recent version of 14 scales were therefore reviewed. Of
these 14 scales, five specifically measure ADHD symptoms in typically developing children
and two in children with ID. A further seven scales measure ADHD symptoms within the
context of broader behavioural and emotional problems; four in typically developing children
and three in children with ID. Measures that contained subscales measuring aspects related
inattention (e.g., the inhibit and working memory subscales of the Behaviour Rating
Inventory of Executive Function; Gioia, et al., 2000) were excluded from the review.
4.1 Measures with a focus on attention deficit hyperactivity disorder and/or attentional
The second edition of the ACTeRS (Ullman, Sleator, & Sprague, 2000) is a 24-item
rating scale completed by teachers and contains four subscales: attention, hyperactivity,
social skills and oppositional behaviour. Each item is ranked on a 5-point Likert scale from
almost never to almost always. The ACTeRS-2 has separate norms for boys and girls
48
reported in percentile ranks, and can be administered to children from preschool to Year
Eight.
The premise for developing this scale specifically for teachers is because the authors
believed that behaviours related to ADHD are more likely to manifest themselves in the
classroom, and therefore teachers are the best informants to observe and report upon them
(Ullman, et al., 2000). Despite this assertion, the ACTeRS-2 also has two other scales –
parent and self-report – to provide additional information for the clinician of the child’s
The psychometric properties of the ACTeRS-2 are described in Table 4.1. The authors
report sound psychometric properties for the teacher version (Ullman, et al., 2000), although
across ADHD subtypes (Forbes, 2001). For the parent version, only the internal consistency
was reported (Ullman, et al., 2000). No independent studies have evaluated the psychometric
The ADHD Rating Scale-IV (DuPaul, et al., 1998) was developed as a revised version
of the ADHD Rating Scale (DuPaul, 1991) to reflect changes to diagnostic criteria in the
the parent or caregiver and a school version completed by the teacher for children or
adolescents aged 5 to 18 years. A preschool version has also been released (McGoey,
DuPaul, Haley, & Shelton, 2007). Each version has 18 items with 9 items on the inattention
scale from never or rarely to very often. Raw scores are then converted to percentile scores
49
Table 4.1
Psychometric Properties of Measures with a Focus on Attention-Deficit Hyperactivity Disorder and/or Attentional Difficulties for Use with
Scale Psychometric properties reported by authors Independent studies with typically developing
children
ADD-H Comprehensive Teacher Ullman et al. (2000) None to date
Rating Scale – Second edition, Parent Fair to excellent internal consistency for the five
form (ACTeRS-2) subscales (α = .78 – .96)
ADD-H Comprehensive Teacher Ullman et al. (2000) Erford & Hase (2006)
Rating Scale – Second edition, Excellent internal consistency across the four factors (α Typically developing children between kindergarten and
Teacher form (ACTeRS-2) = .92 – .97) Grade 5
Strong test-retest reliability over 4 weeks (r = .78 – .82) Good to excellent internal consistency across the four
Moderate inter-rater reliability across teachers factors (α = .89 – .93)
(r = .51 - .73) Strong test-retest reliability over 30 days
Good discriminant validity between children with (r = .80 – .89)
ADHD and typically developing children Low to moderate convergent validity with the factors
Good discriminant validity between children with from the Conners Teacher Rating Scale -Revised (r = -
ADHD and children with a learning disability .42 – -.53)
Moderate specificity for inattentive and hyperactive
types (.81 and .88 respectively) but lower sensitivity for
both types (.77 and .81 respectively)
Forbes (2001)
Typically developing children between Grades 1 and 6
Strong convergent validity with the Conners Teacher
Rating Scale - Revised (r = -.54 – -.72)1
1
Correlations are negative as lower scores on the ACTeRS compared with higher scores on the Conners, indicate greater severity of symptoms
50
Low convergent validity with the Conners Parent Rating
Scale – Revised (r = -.01 – -.43)
Low discriminant validity - unable to distinguish
children with hyperactive/combined ADHD from those
with the inattentive subtype
ADHD Rating Scale – IV – Home DuPaul et al. (1998) The psychometric properties have been examined in
version (ADHD-RS-IV) Good to excellent internal consistency (α = .88 – .94) Korean (Kim et al., 2005) and Icelandic (Magnusson,
Strong test-retest reliability over four weeks (r = .78 – Smari, Gretarsdottir, & Prandardottir, 1999) language
.86) adaptations using typically developing children. It has
Moderate inter-rater reliability across parent and teacher also been examined in a number of studies using
ratings (r = .40 – .45) physician ratings (e.g., Dopfner et al., 2006; Zhang,
Considerable variability in convergent validity with the Faries, Vowles, & Michelson, 2005)
Conners Parent Rating Scale (r = .28 - .81)
Inadequate sensitivity (.57) but excellent specificity in
diagnosing ADHD – inattentive (.91). low sensitivity
(.76) but excellent specificity (.91) in diagnosing ADHD
– combined
Good discriminant validity between children with
ADHD and typically developing children in both clinic
and school samples
Good discriminant validity between children with
ADHD inattentive or combined subtypes in both clinic
and school samples
51
ADHD and typically developing children in a school
sample
2
Psychometric properties relate to full-length Conners 3 forms
52
by a psychiatrist or psychologist)
Limited discriminant validity between children with
hyperactive/impulsive and inattentive subtypes of
ADHD
Swanson, Nolan & Pelham Checklist – Swanson (1992) Solanto & Alvir (2009)
Fourth edition (SNAP- IV) Psychometric data not reported. Parent and teacher ratings for typically developing
Validity implied as items are formulated from the DSM- children and children referred for attention difficulties
IV but no psychometric analyses to support this Fair to excellent internal consistency for parent ratings (α
conclusion = .71 – .92)
Excellent internal consistentency for teacher ratings (α =
53
.90 – .97)
Considerable variability in convergent validity with
corresponding subscale items on the Conners Rating
Scales – Revised for teacher ratings (k = .31 – .79) and
parent ratings (k = .37 – .72)
Used MTA-SNAP-IV
Bussing et al. (2008)
Parent and teacher ratings for typically developing
children
Fair to good internal consistency for parent ratings (α =
.79 – .90)
Excellent internal consistentency for teacher ratings (α =
.92 – .96)
Moderate inter-rater reliability across parent and teacher
ratings (r = .43 – .49)
Good discriminant validity between children who met
diagnostic criteria for ADHD and typically developing
children for parent ratings
54
Strengths and Weaknesses of ADHD Swanson et al. (2005) Young, Levy, Martin & Hay (2009)
Symptoms and Normal Behaviour Psychometric data not reported. Excellent internal consistency (α = .94 – .96)
Scale (SWAN) Good discriminant validity between children with
ADHD (any subtype) and typically developing children
55
The psychometric properties of the ADHD-RS-IV are described in Table 4.1. The
convergent validity of the school version with the Conners Teacher Rating Scale (CTRS) are
variable, but all other properties are strong (DuPaul, et al., 1998). No independent studies,
however, have examined the psychometric properties of the school version. The home
version of this scale has variable psychometric properties. It has good to excellent internal
discriminant validity between children with ADHD and those who are typically developing.
Similar to the school version, it has variable convergent validity with the Conners Parent
Rating Scale (CPRS). The authors also reported that while the ADHD-RS-IV home version
has inadequate to low sensitivity in diagnosing ADHD inattentive and combined subtypes, it
The Conners Third edition (Conners, 2008) has separate forms completed by parents
and teachers for children and adolescents aged 6 to 18 years, as well as a self-report scale for
children and adolescents aged 8 to 18 years. It aims to evaluate symptoms of ADHD and
related disorders, and makes direct reference to the diagnostic criteria for ADHD set out in
the DSM-IV-TR (American Psychiatric Association, 2000). Short (39 to 43 items) and long
(105 to 110 items) forms are available which ask the respondent to respond on a 4-point scale
from not true at all (never, seldom) to very much true (very often, very frequently). The items
problems, executive functioning, aggression, and peer relations. It also measures behaviours
consistent with oppositional defiant and conduct disorders which may be observed in children
with ADHD.
The teacher version of this scale has fair to excellent internal consistency and strong
test-test reliability (see Table 4.1; Conners, 2008). It also has strong convergent validity with
56
the relevant subscales measuring attention difficulties on the Child Behaviour Checklist
Teacher Report Form (CBCL TRF) and the Behaviour Rating Inventory of Executive
Function Teacher Form (BRIEF). The authors reported good discriminant validity between
children with ADHD, children with other clinical disorders and typically developing children,
The parent version of this scale has good to excellent internal consistency, strong test-
test reliability and moderate to strong inter-rater reliability across parent and teacher ratings
(see Table 4.1; Conners, 2008). It also has strong convergent validity with the corresponding
subscales measuring attention difficulties on the Child Behaviour Checklist (CBCL) and
Behaviour Rating Inventory of Executive Function Parent Form (BRIEF). The authors
reported good discriminant validity between children with ADHD, children with other
clinical disorders and typically developing children, but limited discriminant validity to
distinguish across ADHD subtypes. No independent studies to date have examined the
has 90 items. The initial 40 items relate to ADHD (with two subscales: hyperactivity and
inattention) and oppositional defiant disorder (ODD). The remaining 50 items relate to
which the author proposed may overlap with or masquerade as ADHD symptoms. There is
also a shorter, 26 item version with 18 items relating to ADHD and 8 items relating to ODD.
This version is sometimes referred to as the MTA-SNAP-IV as it was used in the Multimodal
Treatment Study for ADHD (The MTA Cooperative Group, 1999). The SNAP-IV is freely
available from the author’s web site (Swanson, n.d.) but lacks age- and gender-based norms.
57
There is no psychometric data published by the author for the SNAP-IV (Swanson,
1992). Face validity could be implied given that the items were formulated from DSM-III-R
Independent studies have suggested that the SNAP-IV has fair to excellent internal
consistency for parent ratings and good to excellent internal consistency for teacher ratings
(see Table 4.1; Solanto & Alvir, 2009; Stevens, et al., 1998). Its convergent validity with the
CPRS-R and CTRS-R had significant variation across subscales for both parent and teacher
4.1.4 Strengths and Weaknesses of ADHD Symptoms and Normal Behaviour Scale
(SWAN)
The SWAN (Swanson, et al., 2005) is a revision of the SNAP-IV (reviewed above;
Swanson, 1992) with the items reworded in a positive (strength-based) manner e.g., Often
talks excessively became Modulate verbal activity (control excess talking). As with the MTA-
SNAP-IV (The MTA Cooperative Group, 1999), it consists of 18 items, with nine related to
inattention and the other nine related to hyperactivity/impulsivity. Like the SNAP-IV
(Swanson, 1992), it does not have separate scales for parents and teachers.
Unlike other rating scales that use diagnostic cut-points, the SWAN conceptualises
ADHD on a 7-point continuum ranging from far below average to far above average,
problems which can occur when using a truncated, problem-based scale (Hay, et al., 2007).
al., 2005). Limited psychometric data from an independent study reported that the SWAN
had excellent reliability and good discriminant validity between children with ADHD (any
subtype) and typically developing children (see Table 4.1; Young, et al., 2009).
58
4.1.5 Limitations of these measures
al., 2005) is that the reliability and validity of these scales has not been established given the
lack of psychometric data. While the ADHD-RS-IV (DuPaul, et al., 1998) reports on its
psychometric properties, the reliability and validity of the home version is variable. The lack
of independent studies examining the psychometric properties of this scale also makes it
difficult to verify its reliability and validity. Along with the ACTeRS-2 (Ullman, et al., 2000),
the SNAP-IV (Swanson, 1992) and SWAN (Swanson, et al., 2005) also lack age-based norms
hyperactivity across different ages (Faraone, et al., 2006; J. C. Hill & Schoener, 1996).
The SNAP-IV (Swanson, 1992) and ADHD-RS-IV (DuPaul, et al., 1998) both
provide clinical cut-off points delineating typical functioning from clinical attentional
difficulties, although flaws in both designs suggest their discriminant validity may be limited.
In the case of the SNAP-IV, the assignment of children as ADHD and/or ODD was based on
teacher ratings and not formal diagnostic criteria. For the ADHD-RS-IV, the authors devised
different cut-off points depending upon: (a) whether the scale is being used as a screening or
diagnostic tool; (b) whether an ADHD – combined or ADHD – inattentive diagnosis is being
investigated; and (c) whether the user wishes to screen/diagnose ADHD or “rule out” this
diagnosis.
(Swanson, 1992) and SWAN (Swanson, et al., 2005) is that they lack details regarding the
demographic characteristics of their samples. The extent to which the samples used in their
development are representative of the wider population are therefore unclear. The ADHD-
RS-IV (DuPaul, et al., 1998) drew upon a diverse population of American children from a
range of cultural backgrounds but their normative data may need to be interpreted with
59
caution in cross-cultural studies. Students from an African-American background scored
consistently higher than students who were Caucasian (Reid et al., 1998). The majority of
children in this sample were also middle class, so the results may not generalise to children
In scoring the ADHD-RS-IV, a total can be calculated with up to three missing items
on each subscale (or 33% of the total number of items; DuPaul, et al., 1998). This could
potentially result in lower scores that may misrepresent the child’s hyperactive/impulsive
and/or inattentive behaviours and may lead to incorrect conclusions being drawn about the
One of the limitations of the Conners 3 (Conners, 2008) is the length of the long form,
with over 100 items being impractical for use as a clinical or screening tool. There is also
some repetition, thus calling into question the inclusion of some items. Other items are
designed to assess the validity of the ratings with generalised statements which some
respondents may choose to omit (e.g., Behaves like an angel), thus defeating the purpose of
their inclusion.
Of the five measures reviewed above, only one has been included in studies
examining the psychometric properties in children or adolescents with ID, namely the
Conners Rating Scales (Conners, 1997, 2008). Given the relatively recent release of the
Conners 3 (Conners, 2008), independent studies that have used this instrument are not yet
available. For the purpose of this review, research on the properties of its predecessor, the
While the Conners Parent and Teacher Rating Scales – Revised (CPRS-R, CTRS-R;
Conners, 1997) has been used in many studies of children with ID, few have validated its use
within these populations (Guerin, et al., 2009). One study examined the utility of these scales
60
among children and adolescents with mild to severe ID (Deb, et al., 2008). As a screening
tool for ADHD, the CPRS-R was found to have excellent sensitivity (.90) but inadequate
specificity (.67). The CTRS-R was found to have inadequate sensitivity (.69) and specificity
(.67). The authors also found the inter-rater reliability across parents and teachers was
unacceptably low (r = .17). The findings suggested that while the CPRS-R may be able to
distinguish between children with ID with or without ADHD, the CTRS-R was unable to
make this distinction. The authors noted that 13 items (46.4%) on the CTRS-R were
dependent upon the child being verbal, thus invalidating the measure for children who do not
have meaningful communication skills. They also questioned the validity of many items on
the CTRS-R and suggested that it would not be a useful measure for rating children with
4.2 Measures with a focus on attention deficit hyperactivity disorder and/or attentional
(ADIECAS)
Developed by Peter Evans (1975, in Evans & Hogg, 1984) as part of his
doctoral thesis, the ADIECAS has 16 items and was developed specifically to examine
inattention and hyperactivity in children with ID. The items are completed by the classroom
teacher and each item is ranked on a scale of 1 to 7, with higher scores indicating higher
severity. The authors reported that two dimensions can be extracted from the scale:
behaviours such as how well a child can restrain their actions, inhibit their responses, and
coordinate their movements. The AD subscale measures behaviours such as the ability to
work well on a set task, resist disruptions and distractions, attend well to instructions, and
persevere.
61
The ADIECAS has moderate to strong test-test reliability but only weak to moderate
inter-rater reliability across teachers (see Table 4.2; Evans & Hogg, 1984). An independent
study of children with severe ID suggested that the ADIECAS has fair to excellent internal
consistency (Strand, Sturmey, & Newton, 1990). Its convergent validity with the CTRS-R
reported significant variation for teacher ratings from very weak to strong (Buckley, Hillery,
Guerin, McEvoy, & Dodd, 2008; Guerin, et al., 2009). A comparison of the factor structure
of the ADIECAS across studies provided by Guerin and colleagues (2009) suggested little
consistency to the composition of items within the subscales, with the only consistent finding
being that all studies extracted the IE and AD subscales (albeit with different items).
The Attention Checklist (AC) was developed specifically for children and adolescents
with ID (Das, 1986, in Das & Melnyk, 1989) with a focus on inattentive behaviours. It was
designed to be completed by teachers and contains 12 items that are rated on a 4-point scale
from not at all to pretty much. The authors reported that the AC has excellent internal
consistency and high convergent validity with the CRS (see Table 4.2; Das & Melnyk, 1989).
While both the ADIECAS (Evans, 1975 in Evans & Hogg, 1984) and AC (Das, 1986
in Das & Melnyk, 1989) have the advantage of being developed specifically to measure
ADHD symptoms in children with ID, neither tool is a valid measure to use within this
population. The psychometric properties of the ADIECAS are variable, and its factor
structure has yielded inconsistent findings across studies (Evans & Hogg, 1984; Strand, et al.,
1990; Turner, Sloper, & Knussen, 1991). The psychometric properties of the AC are reported
to be strong by the authors, but there have been no independent studies that can confirm these
robust findings.
62
Table 4.2
Psychometric Properties of Measures with a Focus on Attention-Deficit Hyperactivity Disorder and/or Attentional Difficulties for Use with
Scale Psychometric properties reported by authors Independent studies with children with ID
63
Attention Checklist (AC) Das & Melnyk (1989) None to date
Excellent internal consistency (α = .96)
High convergent validity with the Conners Rating Scale
(r = -.84).
64
There are several other limitations which may have contributed to their lack of uptake
by researchers and clinicians. Studies using the ADIECAS (Evans, 1975 in Evans & Hogg,
1984) have focused on children with moderate to severe ID, so its validity for use with
children who have mild ID has not been established. The AC (Das, 1986 in Das & Melnyk,
1989) only measures inattentive behaviours with the authors offering no explanation or
has developed a parent version, precluding the ability to obtain and contrast behavioural data
from multiple informants. Both scales also lack commercial availability and lack age- or
4.3 Measures assessing a range of behavioural and emotional problems designed for
The measures reviewed in this section assess a broad range of behavioural and
emotional problems in typically developing children. Given the focus of this thesis is on
behaviours relating to attention, hyperactivity and impulsivity these scales will be reviewed
The BASC-2 is a set of rating scales for children, adolescents, and young adults aged
2 to 21 years (Reynolds & Kamphaus, 2004) with separate forms for parents (Parent Rating
Scale; PRS) and teachers (Teacher Rating Scale; TRS). There is some variation in the number
and composition of items depending on the age of the individual being rated: preschool (2 to
5 years), child (6 to 11 years) and adolescent (12 to 21 years). The PRS forms have 134 to
160 items and the TRS forms have 100 to 139 items. Each item is rated on a 4-point scale
from never to almost always. The manual contains separate norms across genders, age ranges,
and for general as well as clinical (i.e., learning disability and ADHD) samples.
65
The BASC-2 contains two subscales relating to ADHD symptomatology: attention
problems and hyperactivity. Markers for ADHD are indicated by scores in the clinical range
(a T score ≥70) on either subscale. These scores are reported separately which allows for
different subtypes to be explored. The authors have emphasised that these scores can be used
to assist with diagnosis of ADHD but should not be used in isolation (Reynolds &
Kamphaus, 2004).
The authors reported that the TRS has good to excellent internal consistency in both
general and clinical samples (see Table 4.3; Reynolds & Kamphaus, 2004). They also
reported that the BASC-2 has strong test-retest reliability and moderate to strong inter-rater
reliability across teachers (Reynolds & Kamphaus, 2004). These properties have been
replicated in an independent study (Bergeron, Floyd, McCormack, & Farmer, 2008). Strong
convergent validity with the CTRS-R and CBCL TRF has been reported by the authors, but
no independent studies have confirmed these findings. The validity of the TRS to
discriminate children with ADHD from those who do not have this diagnosis, or to
The PRS has good to excellent internal consistency in both general and clinical
samples (see Table 4.3; Reynolds & Kamphaus, 2004). The authors also reported that the
PRS has strong test-test reliability and strong inter-rater reliability across parents (Reynolds
& Kamphaus, 2004). The convergent validity of the attention problems and hyperactivity
subscales of the BASC-2 PRS with the attention problems subscale of the CBCL were found
Reported advantages of the BASC-2 include its use of validity checks for excessively
negative or positive responses (Gladman & Lancaster, 2003), and its inclusion of adaptive
66
Table 4.3
Psychometric Properties of Measures Assessing a Range of Behavioural and Emotional Problems for Use with Typically Developing Children
Scale Psychometric properties reported by authors Independent studies with typically developing
children
3
Behavior Assessment System for Reynolds and Kamphaus (2004) Myers et al. (2010)
Children – Second edition – Parent Good to excellent internal consistency across composite Clinically referred preschool children
form (BASC-2 PRS) scales and the overall BSI for the general (α = .89 – .95) Moderate to strong convergent validity with
and clinical samples (α = .90 – .96) corresponding CBCL 1.5 -5 subscales (r = .44 - .86) and
Strong test-retest reliability over a period of 9 - 70 days4 composite scores (r = .63 - .90)
(r = .78 – .92)
Strong inter-rater reliability across mother and father
ratings (r = .65 – .86)
Strong convergent validity with the CBCL on the
externalising and internalising subscales, and the total
score (r = .67 – .84)
Strong convergent validity with the Conners PRS-R total
score (r = .65 – .79)
Moderate to strong convergent validity between the
attention problems and hyperactivity subscales and the
BRIEF working memory and inhibit subscales (r = .48 –
.79)
Behavior Assessment System for Reynolds and Kamphaus (2004) 5 Bergeron et al. (2008)
Children – Second edition – Teacher Good to excellent internal consistency across composite Typically developing children attending primary schools
form (BASC-2 TRS) scales and the overall BSI for the general (α = .87 – .97) Strong test-retest reliability over a period of 8-25 days (r
3
Child and adolescent forms were analysed separately by the authors, but are reported together here
4
General and clinical samples were combined
5
Child and adolescent forms were analysed separately by the authors, but are reported together here
67
and clinical samples (α = .87 – .97) = .83 – .93)
Strong test-retest reliability over a period of 8 - 65 days6 Strong inter-rater reliability across teachers (r = .72 –
(r = .81 – .93) .79)
Moderate to strong inter-rater reliability across teachers (r Strong convergent validity across the BASC-2
= .48 – .70) externalising problems subscale and the CBCL
Strong convergent validity with the CBCL TRF on the externalising behaviours composite (r = .89)7
externalising and internalising subscales, and the total
score (r = .64 – .80)
Strong convergent validity with the CTRS-R total score (r
= .69 – .84)
Child Behaviour Checklist - Parent Achenbach & Rescorla (2001) Hudziak, et al. (2004)
form (CBCL) Fair to excellent internal consistency Children with attention and/or aggression behaviour
(α = .72 – .97) problems compared with their siblings
Strong test-retest reliability over a mean period of 8 days Inadequate sensitivity (.34) but excellent specificity (.99)
(r = .80 – .94) in diagnosing ADHD
Strong convergent validity with the ADHD Index and
oppositional subscale on the Conners Parent Rating Scale
(r = .71 – .80)
Child Behaviour Checklist - Teacher Achenbach & Rescorla (2001) Bergeron et al. (2008)
report form (TRF) Fair to excellent internal consistency Typically developing children attending primary schools
(α = .72 – .95)8 Strong test-retest reliability over a period of 8-25 days (r
Very weak to moderate inter-rater reliability between = .83 – .90)
teachers and parents (r = .12 – .44) Strong inter-rater reliability across teachers (r = .62 –
Strong test-retest reliability over a mean period of 16 days .73)
(r = .62 – .96)
Strong convergent validity with the Conners Teacher
6
General and clinical samples were combined
7
Convergent validity for ADHD subscales were not calculated as only externalising behaviours were examined in this study, precluding a comparison of inattentive
behaviours
8
Lower alphas corresponded with the somatic complaints and thought problems subscales, which both comprised items that are seldom endorsed by teachers
68
Rating Scale (r = .77 – .89)
Children’s Behaviour Questionnaire Rothbart, Ahadi, Hersey, & Fisher (2001) Kochanska, DeVet, Goldman, Murray, & Putnam (1994)
(CBQ) Unacceptable to excellent internal consistency Mother ratings in 2-6 year old children
(α = .64 – .92) Unacceptable to excellent internal consistency
Considerable variability in inter-rater reliability across (α = .68 – .98)
parents (r = .28 – .79)
The psychometric properties have also been examined in
Chinese (Ahadi, Rothbart, & Ye, 1993) and Japanese
(Kusanagi, 1993, in Rothbart, et al., 2001) language
adaptations
69
Strong test-retest reliability over 12 months
(r = .61 – .77)
70
and maladaptive behaviour scales to provide a balanced perspective of each individual (Tan,
2007). It has been suggested that the use of similar scale and item structures on the parent and
teacher forms may increase inter-rater reliability (Gladman & Lancaster, 2003), although
others have reported that its reliability across teachers and parents is limited (Tan, 2007). The
division of hyperactive and inattentive behaviours into separate subscales is also perceived
by some as an advantage (Gladman & Lancaster, 2003) although this could also be
The CBCL has several parent, teacher and self-rating scales. Separate parent/caregiver
and teacher rating scales are available for children aged 1.5 to 5 years (Achenbach &
Rescorla, 2000) and 6 to 18 years (Achenbach & Rescorla, 2001). A self-report scale is also
available for adolescents aged 11 to 18 years. More recently, multicultural norms were also
developed by the author (Achenbach, 2007). The checklist uses a 3-point Likert rating scale
of not true (as far as you know), somewhat/sometimes true, and very/often true.
The parent and teacher rating scales have 118 items relating to specific behavioural
and emotional problems. The authors used a wide normative sample with children and
adolescents from different ethnic and socio-economic backgrounds, and from urban and
rural/remote areas. The CBCL contains syndrome and DSM-oriented subscales relating to
(DSM-oriented) subscales, with a T score above 70 considered to be within the clinical range.
The authors reported that the teacher version of this scale (TRF) had strong test-test
reliability but significant variation in internal consistency (fair to excellent) and very weak to
moderate inter-rater reliability across parent and teacher ratings. When focusing on the
attention problems and attention/deficit hyperactivity subscales, they have excellent internal
consistency (α = .95 and .94 respectively) and strong test-retest reliability (r = .95 for both
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subscales). It also has strong convergent validity with corresponding subscales on the CTRS-
R (see Table 4.3; Achenbach & Rescorla, 2001). No studies to date have examined the
specificity and sensitivity of the TRF for clinical diagnoses, so its diagnostic utility for
ADHD is not known. The only independent study examining the psychometric properties of
the TRF reported strong test-retest and inter-rater reliability in a sample of typically
developing primary school students (Toplak, Bucciarelli, Jain, & Tannock, 2009).
The parent version of this scale (CBCL) is reported to have fair to excellent internal
consistency and strong test-test reliability. When focusing on the attention problems and
attention/deficit hyperactivity subscales, they have good internal consistency (α = .86 and .84
respectively), strong test-retest reliability (r = .92 and .93 respectively) and moderate to
strong convergent validity with corresponding subscales of the CPRS-R (see Table 4.3;
Achenbach & Rescorla, 2001). One study reported that the sensitivity and specificity of
diagnosing ADHD improved significantly when using cut-off T scores of between 52 and 60
in both community and clinical samples (Hudziak, et al., 2004). Given the authors of this
measure would consider these T scores to be within the normal range (Achenbach &
Rescorla, 2001), it has been suggested that the CBCL may underdiagnose children meeting
the criteria for ADHD (Hudziak, et al., 2004). These findings suggested that while the CBCL
may be useful for ruling out a diagnosis of ADHD in children and adolescents, its diagnostic
utility for identification may be limited when using the author’s clinical cutpoints. No other
independent studies have examined the psychometric properties of this version of the CBCL.
(1981), has 195 items and is completed by the parent/primary caregiver. Initially designed to
describe the temperaments of children aged 3 to 7 years, a version has been developed for
children aged 7 to 10 years (the Temperament in Middle Children Questionnaire) and a self-
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report questionnaire for children and adolescents aged 9 to 15 years (Early Adolescent
Temperament Questionnaire). Each item is rated on a 7-point scale from extremely untrue to
extremely true. Short (94 items) and very short (36 items) forms have also been developed
Although the CBQ was not designed to specifically measure ADHD symptomatology,
three of the subscales (attentional focusing, impulsivity and inhibitory control) can provide
information to measure attentional difficulties. The instrument has not yet, however, been
The CBQ is reported to have unacceptable to excellent internal consistency (see Table
4.3; Rothbart, et al., 2001). The three subscales measuring attention difficulties all had fair
internal consistency (α = .67 – .78) a finding which was replicated in an independent study of
toddlers and young children (α = .70 – .72; Kochanska, et al., 1994). The authors also
reported considerable variation in the inter-rater reliability across several samples of parents,
ranging from weak for attentional focusing (r = .39 – .41) to moderate/strong for impulsivity
(r = .53 – .72) and inhibitory control (r = .40 - .72; Rothbart, et al., 2001). Only one
independent study has examined the psychometric properties, which reported variable
The SDQ screens for behavioural difficulties and assesses the impact these
behaviours have on the child’s life (Goodman, 1997). It contains 25 items: 10 regarded as
strengths, 14 regarded as difficulties, and one neutral item. Each item is rated on a 3-point
Likert scale of not true, somewhat true and certainly true. Although there are separate forms
for parents and teachers across two different age groups (4 to 10 and 11 to 17 years), all
contain almost identically worded items. A self-report version is also available for
adolescents aged 11 to 17 years. The questionnaires are freely available for download from a
73
dedicated web site (Goodman, 2004) and normative data from six countries is also available
(Goodman, 2007). It is also available in over 30 languages (Goodman & Scott, 1999) making
The author reported that the SDQ has moderate to strong convergent validity with
corresponding subscales of the CBCL and the Rutter Scales, The inter-rater reliability across
parents and teachers is variable across subscales (see Table 4.3; Goodman, 2007; Goodman
& Scott, 1999), but on the hyperactivity subscale it was moderate (r = .54). No other
psychometric analyses were conducted by the author. An independent study reported strong
test-retest reliability over 12 months (Hawes & Dadds, 2004) but other reports of the
psychometric properties have been less encouraging. Several studies reported that the SDQ
had unacceptable to fair internal consistency in typically developing children (Bourdon, et al.,
2005) and children with ADHD (Becker, et al., 2006). Weak to moderate convergent validity
has also been reported with corresponding subscales on the ADHD-RS-IV (Becker, et al.,
2006).
A strength of the SDQ is its inclusion of items rating the strengths of the child as well
as their limitations. While some authors have deemed that the inclusion of positive items
lengthens a rating scale unnecessarily (Aman, Singh, Stewart, & Field, 1985), this argument
does not hold for this particular scale given the SDQ has just 25 items.
A core limitation of both the SDQ (Goodman, 1997) and CBQ (Rothbart, et al., 2001)
are their weak psychometric properties. Similar properties have been reported in the limited
number of independent studies using these measures (e.g., Becker, et al., 2006; Bourdon, et
74
al., 2005). The CBQ has not been used in populations of children with ADHD, and therefore
A limitation of the BASC-2 (Reynolds & Kamphaus, 2004), CDQ (Rothbart, et al.,
2001) and SDQ (Rothbart, et al., 2001) relates to the forms completed by parents and
teachers. The CBQ only has a parent/caregiver form, and therefore it cannot provide
information or comparisons about the child’s behaviour across different environments. The
BASC-2 and SDQ, while offering separate forms, contain almost identical items, suggesting
that ADHD symptoms do not present differently across settings despite research suggesting
otherwise (Barkley, 2006c; Wolraich et al., 2004). Further, the authors of the BASC-2 did not
report inter-rater reliability across parents and teachers, which do little to support their choice
Another limitation of the SDQ (Goodman, 1997) is that each subscale contains five
items, and therefore its ability to measure hyperactive and inattentive behaviours is restricted.
Compared with other measures, Goodman (1997) stated the SDQ provided a “better coverage
of inattention” (p. 581) but with only two items, it is unclear how he drew this conclusion.
Given the SDQ is intended for use as a screening tool, this clearly poses limitations on its
The authors of the BASC-2 included children with mental retardation /developmental
delay as a clinical group (2.2%, n = 142) in their standardisation study and subscale norms
were calculated (Reynolds & Kamphaus, 2004). The manual does not state, however, how
this group was defined or how individuals were selected for inclusion in this group. No
independent studies to date have examined the psychometric properties of the BASC-2 in
75
The psychometric properties of the CBQ and SDQ have been reported in several
studies of children and adolescents with Down Syndrome (Nygaard, et al., 2002) and
idiopathic ID (Emerson, 2005; Kaptein, Jansen, Vogels, & Reijneveld, 2008). The internal
consistency of the SDQ hyperactivity subscale was fair (α = .73) while the three subscales
measuring attention difficulties in the CBQ ranged from unacceptable to fair (α = .49 – .76).
The inter-rater reliability of the SDQ across parents and teachers was weak to moderate and
therefore low for clinical purposes. While none of these properties were dissimilar from those
reported for typically developing samples (e.g., Becker, et al., 2006; Kochanska, et al., 1994),
it would suggest that findings from these scales needed to be interpreted with caution when
used with children and adolescents with ID, and may not be an accurate reflection of their
behaviour profile.
Only two studies have examined the psychometric properties of the most recent
version of the CBCL, with both studies being conducted on children with ASD (Pandolfi,
Magyar, & Dill, 2009, 2012). The findings of the CBCL 6-18 reported fair to excellent
internal consistency (α = .76 – .94). Similar to Achenbach and Rescorla (2001), the attention
problems subscale had good internal consistency at .83. The internal consistency was
unacceptable on four of the six factors of the CBCL 1.5-5 including the attention problems
subscale (α = .68). Confirmatory factor analyses on both versions of the CBCL supported the
existing factor structure suggested by the authors (Achenbach & Rescorla, 2000) and the
scale’s acceptability for use among children with ASD. Pandolfi and colleagues (2009, 2012)
recommended the CBCL be used in conjunction with other scales when examining comorbid
psychopathology.
When evaluating the suitability of the CBCL for children with ID, reviews have again
been restricted to earlier versions (Koskentausta, Iivanainen, & Almqvist, 2004; Pueschel,
Bernier, & Pezzullo, 1991; Turk, 1998). It is noteworthy, however, that qualitative feedback
76
based on the earlier edition remains relevant to the item set in the more recent release.
Koskentausta and colleagues (2004), for example, believed that the item Acts too young
referred to the child’s intellectual disability rather than being symptomatic of a behaviour
disorder. In another study, parents and teachers found some items irrelevant to the child being
rated, and omitted one or more items when completing it (Turk, 1998). Unfortunately the
author of this study did not provide any further detail of the items deemed irrelevant.
The Aberrant Behaviour Checklist has 58 items and was originally developed to
(ABC - R; Aman, et al., 1985). Since then it has been modified to measure challenging
behaviours in children (Marshburn & Aman, 1992). In 1994, the ABC was revised to reduce
language suggestive of an institutional environment thus creating two checklists: one for
residential settings (ABC-R) and one for the community (ABC-C; Aman & Singh, 1994).
The items are completed by a person well-known to the child (e.g., parent, teacher, carer)
with each item ranked on a 4-point scale from not at all a problem to the problem is severe in
degree. The ABC-C contains one subscale relating to ADHD symptomatology named
behaviours in individuals with ID, the original study drew on “medical judgement” to
estimate degrees of ID. By omitting to use findings from standardised instruments to classify
based on severity of ID could be called into question. Earlier studies also excluded
77
individuals with an estimated mild degree of ID (Aman, Richmond, Stewart, Bell, & Kissel,
1987; Aman, et al., 1985) although subsequent studies have since supported the reliability
and validity of this instrument across all degrees of ID (E. C. Brown, Aman, & Havercamp,
The authors of the ABC-C have reported the psychometric properties of this scale in
several studies. Good to excellent internal consistency was reported in studies of children and
adolescents using parent (see Table 4.4; E. C. Brown, et al., 2002; Kaat, et al., 2013) and
teacher ratings (Marshburn & Aman, 1992). The internal consistency of the
toddlers and young children, although it ranged from unacceptable to excellent for the other
subscales (Karabekiroglu & Aman, 2009). Significant variation in convergent validity was
reported with corresponding subscales of the CBCL 1.5-5, although there was moderate to
internalising and externalising indices of the CBCL (r = .42 – .77; Karabekiroglu & Aman,
2009).
Several other studies have examined the subscale structure of the ABC-C among
children and adolescents with ASD (Brinkley et al., 2007; Kaat, et al., 2013; Karabekiroglu &
Aman, 2009), and a variety of other developmental disabilities and clinical disorders
(Karabekiroglu & Aman, 2009). The findings from these studies generally indicated a good
fit with the ABC-C subscales described by Marshburn and Aman (1992).
The DBC is a 96-item checklist designed to assess a broad range of behavioural and
emotional problems in children and adolescents with ID. Two versions of the checklist have
been developed, with one completed by parents or caregivers (DBC-P) and the other by
teachers or teacher’s aides (DBC-T; Einfeld & Tonge, 2002). The DBC-P was derived from
78
Table 4.4
Psychometric Properties of Measures Assessing a Range of Behavioural and Emotional Problems for Use with Children with Intellectual
Disability
Scale Psychometric properties reported by authors Independent studies with children with ID
Aberrant Behaviour Checklist – Brown et al. (2002) Kaat, Lecavalier & Aman (2013)
Community (ABC-C) Parent ratings only Parent ratings of children with autistic disorder and high
Good to excellent internal consistency functioning autism
(α = .84 – .95) Good to excellent internal consistency (α = .85 – .94)
Strong concurrent validity between ABC hyperactivity
Marshburn & Aman (1992) subscale and CBCL attention problems subscale (r = .56)
Teacher ratings only. Included children with borderline
intellectual functioning (IQ = 70-80) Karabekiroglu & Aman (2009)
Excellent internal consistency (α = .90 – .96) Parent ratings of toddlers
Unacceptable to excellent internal consistency (α = .68 –
.90)
Moderate to strong concurrent validity between ABC
hyperactivity subscale and CBCL 1.5-5 internalising and
externalising indices (r = .42 – .77)
79
Miller, Fee & Jones (2004)
Strong concurrent validity with corresponding subscales
of the ACTeRS (r = -.51 – .52), CBCL - Teacher Report
Form (r = .67), Conners Teacher Rating Scale (r = .63)
and SNAP-III (r = .81)
Weak concurrent validity between ABC hyperactivity
subscale and classroom observation for off-task
behaviour for teachers (r = .31) and teaching assistants (r
= -.07)
Developmental Behaviour Checklist - Einfeld & Tonge (2002) Hastings et al. (2001)
Parent/caregiver scale (DBC-P) Unacceptable to excellent internal consistency Children and adolescents with mild to profound ID
(α = .66 – .91) Unacceptable to excellent internal consistency
Strong inter-rater reliability between parents (ICC = .80) (α = .66 – .91)9
and nurses (ICC = .83) of adolescents in residential
settings Dekker, et al. (2002)
Weak inter-rater reliability across parents and teachers Children with mild to profound ID as well as children
(ICC = .30) with borderline intelligence
Strong test-retest reliability over 2 weeks Unacceptable to excellent internal consistency
(ICC = .83) (α = .66 – .91)
Strong concurrent validity between parent ratings on Strong test-retest reliability over 17 days
DBC and psychiatrist/psychologist ratings on three (r = .76 – .89)
scales of behavioural/emotional disturbance (r = .81) Moderate to strong inter-rater reliability between
Strong convergent validity with the maladaptive mothers and fathers (r = .52 – .67)
behaviour subscale of the Adaptive Behavior Scale Moderate to strong convergent validity on
School edition (r = .86) and the problem behaviour disruptive/antisocial, anxiety and social relating
subscale on the Scales of Independent Behaviors (r = subscales compared with corresponding subscales on the
9
Parent and teacher rating scales were analysed together
80
.72) CBCL (r = .47 – .85)
Excellent sensitivity (.83) and specificity (.85) in
distinguishing children with severe psychopathology
from “non-cases”
Developmental Behaviour Checklist - Einfeld & Tonge (2002) Dekker et al. (2002)
Teacher scale (DBC-T) Unacceptable to excellent internal consistency Children with mild to profound ID as well as children
(α = .62 – .91) with borderline intelligence
Moderate inter-rater reliability between teachers and Unacceptable to excellent internal consistency
teacher’s aides (ICC = .60) (α = .67 – .91)
Strong test-retest reliability over 2 weeks Strong test-retest reliability over 19 days
(ICC = .73) (r = .69 – .91)
Strong concurrent validity between teacher ratings on Weak to moderate inter-rater reliability between parents
DBC and psychiatrist/psychologist ratings on three and teachers (r = .27 – .57)
scales of behavioural/emotional disturbance (r = .66) Moderate to strong convergent validity on
disruptive/antisocial, anxiety and social relating
subscales compared with corresponding subscales on the
CBCL (r = .43 – .87)
81
Children and adolescents with autism
Weak to moderate inter-rater reliability across parents
and teachers (ICC = .16 – .57)
82
Lecavalier et al. (2004)
Children and adolescents with autism
Fair to excellent internal consistency for problem
behaviours (α = .77 – .92)
Construct validity of subscales supported in children
with autism
83
an examination of the behavioural and emotional symptoms described in a large sample
(more than 7000) of case notes of children and adolescents with ID. The DBC-T contains
almost identical items, excluding the three items relating to sleep disturbance, and including
an additional item relating to popularity with peers. Each item is ranked on a 3-point Likert
scale from not true as far as you know to very true or often true. Although not specifically
hyperactivity which was derived by pooling six items from the checklist that had face validity
for these behaviours. The authors conceptualised hyperactivity as a spectrum rather than a
categorical disorder (Hay, et al., 2007), and therefore did not provide a clinical cut-off score.
Instead, they suggested that higher scores related to greater severity of ADHD symptoms
The authors have done an extensive examination of the psychometric properties of the
DBC-P. The internal consistency is variable, being good to excellent on the self-absorbed and
and fair on the remaining two subscales (see Table 4.4; Einfeld & Tonge, 2002). Inter-rater
reliability is varied, being strong across parents and nurses of adolescents in residential
settings but weaker across parents and teachers. Other psychometric properties of the DBC-P
are strong, including test-retest reliability, concurrent validity and excellent sensitivity and
test-retest and inter-rater reliability (Dekker, et al., 2002; Hastings, et al., 2001).
The psychometric properties of the hyperactivity subscale were assessed with a group
of children aged 4 to 13 years (n = 57; Einfeld & Tonge, 2002). Using the DBC-P, the
subscale was found to have excellent internal consistency and convergent validity with the
hyperactivity subscale on the CPRS-R. The authors also reported that the DBC-P had
84
significant discriminant ability in detecting the presence or absence of hyperactivity using the
DSM-III-R criteria.
Similar to the DBC-P, the DBC-T has variable internal consistency, being excellent
anxiety subscale (α = .62) and fair on the remaining two subscales. It has strong test-test
reliability, moderate inter-rater reliability across teacher and teacher’s aide ratings, and strong
behavioural/emotional disturbance (see Table 2.4; Einfeld & Tonge, 2002). An independent
study has reported similar psychometric properties relating to the internal consistency and
test-retest reliability, although their sample included children with borderline intelligence
(Dekker, et al., 2002). The reliability and validity of the hyperactivity subscale on the DBC-T
The reported advantages of the DBC include ease of administration and its ability to
assess a broad range of emotional and behavioural problems in children and adolescents with
ID (Dekker, et al., 2002; Hastings, et al., 2001). The robust psychometric properties have
been confirmed by independent studies using both the parent and teacher versions (Dekker, et
al., 2002; Hastings, et al., 2001). The face validity of the behaviours in the DBC are also
high, given they were drawn from case notes of children with ID presenting at clinics.
The NCBRF was derived from an existing child psychopathology rating scale,
the Child Behavior Rating Form (Edelbrock, 1985), and was developed to assess behavioural
and emotional problems in children and adolescents with ID (Aman, et al., 1996; Tasse,
Aman, Hammer, & Rojahn, 1996). For the problem behaviour items, each is ranked on a 4-
point Likert scale from not a problem to a severe problem. It contains six subscales, with the
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aide and parent versions (although the authors stipulate that it could also be completed by a
caregiver or mature sibling; Tasse, et al., 1996). The items and wording are identical on both
forms, although factor analyses extracted different items within the subscales across the two
versions (Aman, et al., 1996). The NCBRF forms are freely available to download (Research
Unit on Pediatric Psychopharmacology, 2010), although the authors have stipulated that only
The internal consistency of the teacher version is good to excellent among children
with ID (see Table 4.4; Aman, et al., 1996) and fair to excellent among children with ASD
subscales of the ABC-C (Aman, et al., 1996), strong inter-rater reliability across teachers
(Rojahn, et al., 2010), and strong test-retest reliability (Rojahn, et al., 2010) were also
reported. No independent studies have examined the psychometric properties of the NCBRF
teacher form.
The parent version of this scale has fair to excellent internal consistency among
children with ID (Aman, et al., 1996; Rojahn, et al., 2010) or ASD (Lecavalier, et al., 2004).
Weak to moderate inter-rater reliability has been reported across parents and teachers (Aman,
et al., 1996; Lecavalier, et al., 2006; Rojahn, et al., 2010), but moderate to strong convergent
validity with corresponding subscales of the ABC-C (Aman, et al., 1996). No independent
studies have examined the psychometric properties of the NCBRF parent form.
items (Aman, et al., 1996; Hastings, et al., 2001), which others have suggested may improve
the response rates from parents and teachers when reporting on a child’s behaviours
(Goodman, 1997).
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4.4.3 Limitations of these measures
A limitation common to all of these scales is the use of a rating system that places an
emphasis on deficits in attention. For example, symptom severity may be rated on a scale
from not at all to very often or always. The use of such rating systems may result in a skewed
representation of attention (Hay, et al., 2007), with all individuals who do not have ADHD
being assigned low or zero scores. This system implies that ADHD occurs as a categorisation
rather than recognising that it may exist on a continuum (Hay, et al., 2007; Levy, Hay,
McStephen, Wood, & Waldman, 1997; Waschbusch & Sparkes, 2003), with some individuals
performing better than average in their ability to pay attention or inhibit activity. While this
limitation has been addressed in the development of the SWAN (Swanson, et al., 2005), this
scale has been used in relatively few studies to date, none of which included children with ID.
Despite a favorable review of the ABC-C (Aman & Singh, 1994) by Miller and
colleagues (2004), their conclusions are limited by their lack of generalisability to the wider
population due to the small sample size (n = 48), exclusion of children with severe or
profound ID, lack of generalisability to the wider population due to the high proportion
(85.4%) of African Americans in their sample, and comparing the ABC-C with older versions
of ADHD rating scales that have since been revised. Another weakness of the ABC-C is that
it has not been revised since its development over 20 years ago. Our understanding of
inattention and hyperactivity has changed greatly in this time (Cornish & Wilding, 2010).
These developments suggest that this scale may be somewhat outdated in its behavioural
Singh, 1994) may also be difficult to interpret at face value given the composition of the
items within it. The subscale contains items relating to hyperactivity, impulsivity,
noncompliance and inattention. It would be therefore possible that a child may be rated
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highly only on the items relating to noncompliance and inattention, and yet without
examining the items individually one might draw the conclusion that the child had difficulties
with hyperactivity (based on the subscale name) even though few or none of those items were
endorsed. Even if examined at an item level, this subscale contains only two items relating to
inattention (Pays no attention when spoken to and Does not pay attention to instructions),
thus limiting both its ability to identify behaviours relating to inattentive symptoms and its
The DBC (Einfeld & Tonge, 1995, 2002) was not specifically designed to assess
ADHD symptomatology but does contain a subset of six items that have face validity for
hyperactive and inattentive behaviours within the existing item set. This subset of items
forms part of a broader disruptive/antisocial subscale which describe behaviours that can be
disruptive to self or others. Although the hyperactivity subscale has demonstrated internal
consistency, further psychometric analyses have been limited to the parent version of the
rating scale (Einfeld & Tonge, 2002). Given the majority of children in the sample examining
the hyperactivity subscale had mild ID (86%), its validity for measuring hyperactivity in
children with moderate, severe, or profound ID is not clear at the present time. The small
number of hyperactive and inattentive behaviours within this scale, while being useful
markers, are not sufficiently broad enough to understand the range of behaviours related to
4.5 Summary
Rating scales are often used to assist with screening for and diagnosing ADHD
(Barkley & Edwards, 2006), and for identifying ADHD symptomatology in clinical research.
The utility of existing rating scales, however, reveal significant shortcomings when used
among populations with ID. These limitations can be seen both when considering scales
designed for typically developing children and those for children with ID.
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When examining the rating scales designed for typically developing children, the
psychometric properties of four of the measures have not been examined in children or
adolescents with ID, namely the ADD-H Comprehensive Teacher Rating Scale - Second
edition (Ullman, et al., 2000); the ADHD Rating Scale IV (DuPaul, et al., 1998); the
Swanson, Nolan & Pelham Checklist – Fourth edition (Swanson, 1992); and the Strengths
and Weaknesses of ADHD Symptoms and Normal Behaviour Scale (SWAN; Swanson, et al.,
2005). The psychometric properties of the Behaviour Assessment System for Children –
Second edition (Reynolds & Kamphaus, 2004) have not been replicated in independent
studies. Studies using the Children’s Behaviour Questionnaire (Rothbart, 1981) and the
Strength and Difficulties Questionnaire (Goodman, 1997) have examined the psychometric
properties in children with ID, although the findings from both measures concluded that the
The Conners Rating Scales – Revised (Conners, 1997) have frequently been used in
studies of children with ID even though their validity for use within this population is
questionable (Guerin, et al., 2009). Two studies have reported limitations with its
psychometric properties, including its inter-rater reliability across parents and teachers (Deb,
et al., 2008; M. L. Miller, Fee, & Netterville, 2004). It was also noted that 13 items (46.4%)
on the teacher version were dependent upon the child being verbal, thus invalidating the
measure for a significant proportion of children with severe and profound intellectual
The Child Behaviour Checklist (CBCL; Achenbach & Rescorla, 2001) has also been
properties is limited to two studies which reported the internal consistency for children with
autism was highly variable (Pandolfi, et al., 2009, 2012) and no further analyses of
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needed to establish whether the CBCL has reliability and validity within this population.
Several authors have questioned the validity of some of the rating scale items, citing that they
the child being rated, particularly for children with moderate, severe or profound ID.
Shortcomings also exist that are specific to those rating scales developed for children
with ID. A lack of independent studies has validated the psychometric properties of the
Nisonger Child Behaviour Rating Form (NCBRF; Aman, et al., 1996) and the Attention
Checklist (AC; Das, 1986 in Das & Melnyk, 1989). The NCBRF is restricted to only
measuring hyperactive behaviours and the AC only inattentive behaviours. The Attention-
Hogg, 1984) lacks age- and gender-based normative data and a parent version of the form,
and independent studies report variable psychometric properties (Guerin, et al., 2009; Strand,
et al., 1990). It has not been validated for use in children with mild ID. Limitations of the
Aberrant Behaviour Checklist – Community (Aman & Singh, 1994) include the lack of
updated versions since its development 20 years ago, the difficult interpretability of the
hyperactivity subscale given items relating to noncompliance also loaded on this factor, and
the limited number of items relating to inattention. The items making up the hyperactivity
subscale of the Developmental Behaviour Checklist (Einfeld & Tonge, 2002) contain items
relating to both hyperactivity and inattention, although it is likely to be limited in its ability to
provide a complete picture of ADHD symptomatology given this subscale contains just six
items. Its ability to assess hyperactive symptoms in children with moderate to profound ID, or
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CHAPTER 5 THE FOCUS OF THE PRESENT STUDY
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The review of rating scales in the previous chapter suggests that most of the measures
are used infrequently among children and adolescents with ID, and few of the scales
when they are used with these populations. In the case of the Conners Third edition (Conners,
2008), the review drew upon results of studies using the previous edition (Conners, 1997)
which may not reflect their reliability or validity in the current version. The decrease in the
number of studies utilising these scales may also reflect the realisation that they are less
appropriate for use with children and adolescents who have ID, or the slow but growing
availability of clinically reliable and valid scales developed specifically for this population.
The need to develop a rating scale to measure attention and hyperactivity among
children with ID has been recognised (Deb, et al., 2008) but not yet adequately addressed.
This is particularly important given that the prevalence of ADHD is at least as common, if
not more so, in children with ID as it is among children who are typically developing (Neece,
et al., 2011). The administration of rating scales is useful when conducting a clinical
recent study indicating that they are utilised by two-thirds of clinicians when using formal
hyperactivity exist across known causes of ID (Cornish, Steele, et al., 2012; Hastings, et al.,
2005; Papaeliou, et al., 2012). In the absence of any alternatives, these studies have had to
utilise rating scales included in the review in Chapter 4 above, all of which have
shortcomings in their ability to measure ADHD symptomatology within this population. The
inclusion of a measure that has been validated for children with ID would assist researchers
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in gaining a greater understanding of these differences. Therefore, it is clear that a reliable
and valid rating scale for children within this population is needed.
• to develop a reliable and valid rating scale that is more sensitive to exploring the range
• that the scores on the new rating scale will have good convergent validity with existing
measures of ADHD
• to describe and compare the profiles of ADHD symptoms in children with known causes
of ID
5.2 Hypotheses
It is hypothesised that:
intellectual disability.
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CHAPTER 6 METHOD
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6.1 Phase 1a: Item Development for Rating Scale
The guidelines as defined by DeVellis (2003) were used as a framework to inform all
phases of rating scale development. In the first phase, a variety of methods were drawn upon
to determine the behaviours related to attention difficulties in children and adolescents with
intellectual disability (ID) that were salient to teachers. In the first stage, all items from the
rating scales reviewed previously that were related to attention difficulties were listed in a
table under the headings of hyperactivity, impulsivity, inattention and working memory.
Behaviours were also recorded from observational and descriptive data provided in published
These items and behaviours were categorised onto concept maps under these four
headings, with subcategories reflecting the criteria described in the DSM-IV-TR (American
Psychiatric Association, 2000), ICD-10 (World Health Organization, 1992), DC-LD (Royal
College of Psychiatrists, 2001) and DM-ID (P. Lee & Friedlander, 2007). The use of concept
maps allowed for consideration of many possible behaviours representing these four areas.
Two members of the research team experienced in the field of attention difficulties
among young people with known causes of ID (Professor Kim Cornish and Associate
Professor Kylie Gray), along with the author, evaluated the concept maps to determine
whether they reflected behaviours that would be observed in young people with an
intellectual disability. Many behaviours were discarded as they were not considered
representative of the behaviours of children with ID (e.g., Puts off projects until the last
minute). Some behaviours were modified to better reflect the abilities expected of a young
person with ID (e.g., Crosses the road independently was modified to Stops and waits when
they get to the road to take into account those children with greater degrees of ID for whom
asking them to independently cross the road would not be considered possible and/or
appropriate).
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Those behaviours that were retained were converted into lay language that would be
readily understood by teachers and teacher’s aides. Examples followed some items to help
define or illustrate the behaviour they were being asked to rate. All items were worded
positively as it has been proposed that this may help to improve response rates of parents and
teachers when reporting on children's behaviours (Goodman, 1997). Prior to distributing the
questionnaire to participants in the study, the T-SAID was subjected to the Flesch-Kincaid
test (Bond & Fox, 2007; Pallant & Tennant, 2007). This test uses two formulae to calculate
reading ease and grade level based on sentence and word length and was calculated using
Flesh 2.0 software (Frink, 2007). The findings indicated that the rating scale has a readability
index of 56 and a reading grade level of 8.54, making it appropriate for distribution among
teachers.
Following these procedures, the list of attention difficulties encompassing the four
headings listed above were organised as a rating scale. The response set consisted of a 4-point
scale where each item is scored from never to often. Once the rating scale items and response
set had been developed, the rating scale was presented to groups of health professionals and
6.2.1 Participants
work experience = 10.4 years, range = 2.5 – 25 years) and 3 paediatricians (2 males and 1
female; mean years of work experience = 27.3 years, range = 15 – 37 years), and 9 teachers
(2 males and 7 females; mean years of teaching experience = 11.2 years, range = 6 months –
20 years) were recruited for the focus group discussions. Teachers and health professionals
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6.2.2 Procedure
The process of selecting participants for the focus groups was through two stages. For
the school teachers, approval to recruit participants for the focus group was first sought from
the school principals of their respective schools via a letter or phone call informing them
announcements made at staff meetings by the school principal. The teachers were told that
the study was investigating the attention profiles of children with different causes of ID, and
that they would be asked to comment on items written that would potentially be included in a
new rating scale developed by the research team, the Scale of Attention in Intellectual
Disability (SAID). All teachers were invited to take an explanatory statement providing
details of the study and a consent form. Interested teachers returned the consent form by
reply-paid envelope. The letter informed teachers that they could withdraw from the study at
any time.
Health professionals were individuals known to the research team and were
call. They were given the same information about the focus group discussion as the teacher
Each focus group met for approximately 90 minutes in a quiet room at a convenient
location for participants (e.g., school staff room, meeting room at a workplace). The author
led each group, serving as the group facilitator. The participants were reminded that the
discussion would be recorded on Minidisk and that they could leave the focus group at any
time. Light refreshments were provided at each focus group discussion, but no other tangible
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The focus group discussions began with introductions from the facilitator and the
participants. The facilitator proceeded with an overview of the study and the purpose of the
focus group discussion. The focus group discussion commenced with an activity that had the
participants divide into groups to promote engagement and facilitate communication between
members (see Appendix A for the procedure used). This activity used the freelist technique
(Borgatti, 1999) where each group was given a sheet of paper and were instructed to think
about the children they had seen in their practice or classroom who had ID and attention
difficulties. They were asked to list the behaviours they had observed in these children,
During this exercise, the facilitator observed the participants and monitored their progress but
did not participate in the discussions. After 10 minutes, the facilitator asked the groups to
share their ideas, which were listed on a whiteboard or poster paper. The facilitator then led a
brief discussion about the similarities and differences between the lists.
Following this activity, the facilitator proceeded with the focus group questions. Each
participant was given a draft copy of the SAID rating scale and asked to read the items
silently. Following this, the participants were invited to comment on the rating scale items.
They were also given some guiding issues to consider such as the clarity and expression of
the wording, whether they understood the behaviour they would be asked to rate for each
item, the usefulness of each item in the scale, and whether there was any redundancy in the
items. The participants were also asked if they felt there were any behaviours missing on the
rating scale that warranted inclusion, which included a consideration of the behaviours listed
After the discussion, a brief summary of the issues that had been raised was given by
the facilitator, and the participants were given the opportunity to ask any questions or to
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discuss the experience of being in the focus group. Participants were thanked by the
6.2.3 Analysis
The focus group discussions were transcribed from the Minidisk into word processed
documents. These discussions were subjected to thematic analysis, using the method
described by Braun and Clarke (2006). The behaviours relating to attention difficulties from
the freelist activity were coded using a theory-driven (a priori) approach, in that only
particular behaviours discussed were analysed into codes. Codes are defined as a unit of
information extracted from a focus group discussion, and refer to “the most basic segment, or
element, of raw data or information that can be assessed in a meaningful way regarding the
phenomenon” (Boyatzis, 1998, pg. 63). Discussions that diverted away from the central
Codes from the freelist were then organised into potential themes using mind maps.
These themes were then subjected to review and refinement. The homogeneity of themes was
assessed and resulted in some themes being collapsed, and others were broken down further
into separate themes. The importance of each code was also calculated across focus group
interviews. This was determined by the proportion of individuals to whom the code was
applied, rather than the absolute number of times a theme is expressed and coded (which
could be expressed many times by one participant emphasising his/her perceived importance
of this theme, but not at all by other participants; Guest, Bunce, & Johnson, 2006). Some
codes were discarded from the thematic analysis but were considered of interest and therefore
Comments made about the rating scale were coded separately using a theory-driven
approach, and related to the central issues that participants had been asked to consider.
Namely, these issues pertained to: the response set used, clarity and expression of the
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wording, whether they understood the behaviour described in each item, the usefulness of
each item in the scale, redundancy in the items, and any behaviours missing on the rating
scale that warranted inclusion. Coding for the rating scale review was organised into themes
6.3.1 Participants
A total of 215 consent forms were returned by families of children attending a special,
metropolitan area and across regional Victoria. A small number of children were on a split
placement (spending part of their school week in a mainstream school and the rest of their
time in a special school) or were located in a support centre for children with ID on a
Figure 1.
Children were eligible to participate in the study if: (i) they were aged between 5 and
13 years; and (ii) their most recent cognitive assessment placed their functioning in the
intellectually disabled range (i.e., their cognitive and/or adaptive living skills assessment total
score was less than 70). Children with a diagnosis of ASD were only included in the sample
if they scored above the recommended cutoff for autism (i.e., 15 or more) on the lifetime
version of the Social Communication Questionnaire (Rutter, Bailey, & Lord, 2003). A total
of 176 students were eligible to be included in the analyses (114 males and 62 females).
(Hollingshead, 1975) Four Factor Index. This measure has been found to yield comparable
information to more recently developed SES measures (Cirino et al., 2002) but has the
advantages of being simple to complete and less time-consuming. The scale gives a rating for
each parent based on the highest level of education completed and their current occupation.
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Consent form returned (n = 215)
Scores are averaged across ratings for each parent and an overall score is calculated. For
those families where there was only one parent or caregiver, only the ratings for that person
were used. For those families where one parent was unemployed or was a full-time carer, the
ratings were averaged for level of education but only the rating for the employed parent was
used for current occupation. Hollingshead SES scores range from 8 to 66, with a higher score
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6.3.1.1 Test-retest sample
The test-retest reliability of the new rating scale was assessed by asking a random
sample of classroom teachers to complete a second rating scale. The mean interval between
the first and second rating scales being completed was 28 days (SD = 10.41). Teachers who
took longer than 50 days to return the second rating scale (n = 12) were excluded from the
analyses.
6.3.2 Measures
Wechsler, 2002; Wechsler, 2003). The WPPSI-III and WISC-IV are standardised cognitive
assessments which measure the thinking and reasoning skills of children and adolescents. The
WPPSI-III is used with children aged 2 years 6 months to 7 years 3 months, and the WISC-
IV is used with children and adolescents aged 6 years 0 months to 16 years 11 months. The
WPPSI-III yields three index scores (verbal, performance and processing speed) as well as a
full scale score. The WISC-IV yields four index scores (verbal comprehension, perceptual
reasoning, working memory and processing speed) as well as a full scale score. The WPPSI-
III and WISC-IV index and full scale scores have moderate to excellent internal consistency
(α = .85 – .95) and the WISC-IV has very strong test-retest reliability over a mean interval of
27 days (r = .80 - .95)10. The WPPSI-III and WISC-IV were used in this study to determine
Form (VABS-II; Sparrow, Cicchetti, & Balla, 2005). The VABS-II is a standardised
instrument that measures the adaptive living skills of children and adolescents. It consists of 9
subscales categorised into three composite scores: communication, socialisation and daily
10
Test-retest reliability not reported for the WPPSI-III.
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living skills. In young children (5-6 years), there is also a fourth composite score (motor
skills) comprising fine and gross motor skill subscales. The scores are added together to yield
the adaptive behaviour composite. The VABS-II has low to excellent internal consistency for
children aged 5 to 18 years (α = .74 – .98). Test-retest reliability was measured over an
average period of 3 weeks and was found to be moderate to very strong (r = .43 – .97). The
inter-rater reliability (across two teachers or a teacher and a teacher’s aide) had significant
variation, from unacceptably low to strong (r = .04 – .79). The VABS-II-T was used in this
study to determine the current adaptive functioning of children whose cognitive abilities
6.3.2.3 Conners Rating Scales – Third edition, Teacher Short form (Conners
3; Conners, 2008). The Conners 3 consists of 39 items and provides a means of screening for
relations. It has moderate to excellent internal consistency across subscales (α = .87 – .94),
strong test-retest reliability over two to four weeks (r = .70 – .81), and strong inter-rater
reliability across teachers (r = .72 – .83). The subscales of the Conners 3 have very strong
correlations with ratings on the full-length version for both general population and clinical
samples (r = .93 – .98), suggesting that scores on the short form are a sufficient proxy for
those obtained on the long form (Conners, 2008). The Conners 3 was completed by the
child’s current classroom teacher to determine convergent validity with the author’s new
attention scale.
(DBC-T; Einfeld & Tonge, 2002). The DBC-T is a 93-item checklist designed to assess a
broad range of behavioural and emotional problems in children and adolescents with an ID.
The DBC-T has low to excellent internal consistency across the five subscales (α = .62 – .91),
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strong test-retest reliability over 2 weeks (ICC = .73) and moderate inter-rater reliability
across teachers and teacher’s aides (ICC = .60). The DBC-T was completed by the child’s
current classroom teacher to determine convergent validity with the author’s new attention
scale.
2003). The SCQ, previously known as the Autism Screening Questionnaire (ASQ; Berument,
Rutter, Lord, Pickles, & Bailey, 1999), is a 40-item questionnaire completed by the
restricted and repetitive behaviours and interests. It is used as a screener for autism spectrum
disorder and is based on the Autism Diagnostic Interview (ADI; le Couteur et al., 1989), an
earlier version of the Autism Diagnostic Interview – Revised (ADI - R; Rutter, le Couteur, &
Lord, 2003). The authors reported moderate to excellent internal consistency for the SCQ
total score (α = .84 – .93) and strong convergent validity with the ADI - R (r = .71). The SCQ
has the ability to differentiate between individuals with pervasive developmental disorders
(including autism) and those without, with moderate sensitivity (.85) and specificity (.75).
The lifetime version of the SCQ was completed by families of children with a diagnosis of
consists of 46 items and was developed for the purpose of this study. It incorporates four
memory. The teacher version (T-SAID) was examined for validation in this study (see
Appendix B) and was completed by the child’s current teacher (provided they have known
the child for a minimum of 6 months). A parent version (P-SAID) is under development.
Participants respond to each statement on a 4-point scale (never, rarely, sometimes, or often).
All items are worded positively as it has been proposed that this may help to improve
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response rates when reporting on children's behaviours (Goodman, 1997). Higher scores
relate to fewer difficulties. The T-SAID was completed by the child’s teacher to determine
6.3.3 Procedure
Participant selection was through a three-stage process. In the first stage, children
were recruited from several sources. Following ethics clearance from the Department of
Education and Early Childhood Development (DEECD) and the Catholic Education Office
= 8), and autism specialist schools (n = 2) were invited to assist with recruitment for the study
(see Appendix C). Nineteen schools agreed to assist in subject recruitment resulting in a
participation rate of 59.4%. Support groups and community organisations specific to the
diagnostic groups of interest were also approached (e.g., Autism Victoria, Williams
Syndrome Support Group of Victoria), asking them to advertise the study in their newsletter,
The majority of schools (n = 16; 84.2%) who agreed to assist with recruitment
consented to the research team sending home an envelope containing a poster, explanatory
statement and consent form (see Appendices D and E) to all eligible students at their school
aged between 5 and 12 years, either in the student’s diary, communication book or through
the mail. One school (5.3%) allowed the team to only send home information to children in
selected year levels. Two schools (10.5%) consented to a notice about the study being put in
the newsletter for two consecutive weeks. These families contacted the research team directly
either by phone or email, and information was mailed out to them as described above. The
explanatory statement described the study in detail and encouraged families to contact the
research team if they had any questions. Families were informed them that they or their child
could withdraw from the study within 6 weeks of the assessment phase of the study, as per
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the ethical guidelines of Monash University. Families who consented to participate in the
study returned the consent form to the research team in a reply-paid envelope.
Support groups and community organisations who agreed to assist with advertising
the study displayed posters, included an article in their newsletter, and/or posted the
information on an Internet forum or web site. Interested families contacted the research team
directly by phone or email, and information was mailed out as described above. This
Two organisations (Down Syndrome Victoria and the Association of Genetic Support
of Australasia) allowed the research team to mail out the information to all member families
with a child aged between 5 and 12 years, following approval from their respective
Committees. Families who consented to participate in the study returned the consent form to
In the second stage, a member of the research team telephoned each consenting family
to determine their child’s eligibility to participate in the study. Basic demographic (parent’s
occupation and highest level of schooling) and information about their child’s school (i.e.,
current school attended and classroom teacher) was obtained, as well as clinical information
including their child’s primary diagnosis, comorbid diagnoses, and any medication they were
currently prescribed. They were asked whether their child had received a cognitive and/or
adaptive living skills assessment in the past and, if this had taken place, were asked for the
Children across all groups were administered a cognitive assessment, the WPPSI-III
or WISC-IV, depending on their chronological age. If the child had been administered a
cognitive assessment in the last 18 months (WPPSI-III) or 2 years (WISC-IV) then the
previous test results were used and another assessment was not administered. Assessments
were conducted either in a quiet room at the child’s school during school hours or at the
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Centre for Developmental Psychiatry and Psychology, Monash Medical Centre. If a child was
deemed untestable using the WPPSI-III or WISC-IV, then the VABS-II total Adaptive
Behaviour Composite score (ABC) was used to determine the severity of impairment.
The families of all children who received an assessment were given a written report
and verbal feedback by the main investigator (a registered psychologist) explaining the
results. If the family consented, a copy of the report was also provided to the school. The
child needed a FSIQ of 70 or below to be eligible to participate in the study. Children who
In the third stage, the classroom teacher of each eligible child was mailed a booklet of
questionnaires explaining that the research team had informed consent to approach them and
explaining the nature of the study. Although teachers were encouraged to participate, they
were under no obligation to do so and were told that they could withdraw from the study at
any time. For families who consented to participate in the study via a community group or
support organisation, the principal of the school their child attended was contacted informing
them about the study and requesting permission to mail out a booklet to the child’s classroom
teacher. All principals (n = 36) contacted gave consent to assist with the study. It was a
requirement that each teacher who completed the questionnaires had known the child for a
minimum of 6 months. They were asked to complete the Conners 3 (Conners, 2008), the
The questionnaires were completed in the teacher’s own time and took approximately
envelope. Reminder letters or emails were sent to teachers if questionnaires had not been
returned within 4 weeks, and a second reminder was sent if they had not been returned within
6 weeks.
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Parents of children with ASD were asked to complete the SCQ (Rutter, Bailey, et al.,
2003). This questionnaire was mailed to families to complete in their own time and was
returned via a reply-paid envelope. This questionnaire took approximately 10 minutes for
parents to complete. A reminder phone call was made to families if the SCQ had not been
returned within 4 weeks, and a second SCQ was mailed out if it had not been returned within
6 weeks.
6.3.4 Analysis
At the time of its development, the Hollingshead Four Factor Index (Hollingshead,
1975) did not account for single parents who were unemployed or families where both
parents were unemployed. Given that a significant number of families in this study fell into
these categories, the authors recoded the occupational status so that the range from 1 to 9
(service worker to senior manager) was altered and ranged from 1 to 10 (unemployed to
senior manager). Therefore, the total score could range from 8 to 71.
The grouping for level of ID was determined by using the child’s FSIQ from the
WPPSI-III or WISC-IV, or the ABC from the VABS-II for children who were untestable on
the cognitive assessment. Level of ID was defined using the criteria in Sattler (2001): mild ID
(55 – 70), moderate ID (40 – 54), and severe/profound (< 40). Eight children for whom
severity of ID could not be determined were excluded from the regression analyses.
As the response set of the T-SAID offered little distinction between the rarely and
never ratings, it was decided to collapse these two ratings into a single category. Scores on
the T-SAID were then reversed for analysis so that higher scores were indicative of greater
difficulties.
The total score was calculated by taking the mean of all the items (known as the Mean
Item Score, or MIS). This method has a number of advantages over calculating the sum of all
item scores (Taffe, Tonge, Gray, & Einfeld, 2008). One advantage is that the MIS may be
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deconstructed to measure the breadth of behaviours an individual exhibits (the Proportion of
Items Checked, or PIC) and the intensity at which the items are checked for that person (the
Intensity Index, or II). PIC is the proportion of recoded items receiving codes of 1 or 2,
indicating that the corresponding items indicated problematic behaviours. The II is the
Regression analyses were conducted to examine the T-SAID total score across degree
of ID, controlling for age, gender, and SES, with idiopathic ID as the comparison group.
6.3.4.1 Reliability
Internal consistency of the T-SAID was assessed using Cronbach’s alpha (Cronbach,
1951). This assesses the degree to which each item on the T-SAID measures the same
construct based upon all possible correlations between two sets of items within the scale. The
range of the statistic is from 0 to 1. The accepted minimal standard to claim internal
consistency is .70 when evaluating the psychometrics of an instrument. The total score for the
Test-retest reliability was measured using inter-class correlations. This assesses the
extent to which a scale can reproduce the same score for the same individual at different
times.
6.3.4.2 Validity
Convergent validity measured the relationship between the T-SAID and other scales
thought to measure the same construct. In this study, convergent validity was assessed using
and inattention subscale scores from the Conners 3 (Conners, 2008), the hyperactivity
subscale score from the DBC-T (Einfeld & Tonge, 2002), and the T-SAID total score.
Divergent validity measured the relationship between the T-SAID and other scales
thought to measure a different construct. In this study, divergent validity was assessed using
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Pearson’s correlation coefficient between the adaptive behaviour composite on the VABS-II-
A number of factor analytic solutions were considered when examining the T-SAID
data. Oblique rotation was chosen given the assumption that there was a correlation across
factors (Tabachnick & Fidell, 2001). Given the sample size in this study, loadings at or above
.50 were selected for inclusion of an item in interpreting each factor (Hair, Anderson,
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CHAPTER 7 RESULTS FROM PHASE 1: QUESTIONNAIRE
DEVELOPMENT
111
The focus groups were analysed in two parts: the freelist activity and the review of the
and adolescents with ID were extracted from the transcript. Comments from the participants
relating to the composition of the rating scale items were also recorded.
7.1.1 Talking
The majority of teachers who raised the issue of talking mainly focused on the speed
of speech: “On some days he talks so fast I can’t even understand him and I’ll just think
‘Boy, he’s got a bad case of the yaps today’” (F3, P7). Other teachers also spoke about
students with attention difficulties having poor topic maintenance and talking louder than
other students.
A number of teachers raised the issue of children with attention difficulties being
unable to sit still. They described the challenge and ongoing process of helping them to be
At the start of the year he couldn’t even sit still on a chair. He would bang
the table...but we’ve got him to a point now where he can sit still in a chair for 30
seconds. He can sit longer than that, but for 30 seconds he can sit still (F3, P2).
Others said that a child’s inability to sit still serving a functional purpose as an
avoidance strategy: “like [he says] he needs paper or a pencil sharpened...he’ll just say he
needs something so as not to sit down and work” (F3, P6), while others said it depended on
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Like they can be on the move all the time when you’re asking them to do some
arithmetic or a writing task but when you give them a hands on activity they are much
7.1.3 Attention/concentration
Behaviours relating to inattention were discussed less frequently. When the issue was
raised, however, children with attention difficulties were reported to find it significantly more
He’ll have his head down as if he’s reading, but he does this head movement and his
eyes...I know that he’s not working, he’s looking at what others are doing. He needs
Some teachers and psychologists, however, elaborated on this observation and said that it
depended on the task a child was being asked to do, and that they had a greater capacity to
focus on tasks that were more practical and hands on, as opposed to academic tasks. Some
psychologists also discussed the difficulties that some children experienced in returning to a
task after they have been distracted, and that shifting attention back to a task can be as
7.1.4 Impulsive
A number of teachers within the focus groups spoke about the impulsivity of
children, and several related it specifically to the issue of their desire for instant gratification:
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Kids are getting on the computers so much at home, they’ve become like ‘clickerati’
and kids just want things at the click of a button like what they get when they’re on
Others agreed that they had observed this behaviour, but questioned whether this was specific
to children with ID: “I don’t think that’s specific to ID though. That’s any kid with ADHD”
(F3, P8).
Some psychologists discussed the variety of behaviours that could relate to taking
things that belong to other children. One psychologist suggested that the age of the child
needed to be taken into account when considering this behaviour: “A lot of kids in the junior
years of primary school...grab things without asking. I don’t think this is specific to ID” (F2,
P4). Another psychologist suggested that taking other people’s belongings was too specific,
Often kids don’t take, but they do muck around with....they touch, they play
with....They might not be taking things but they’re mucking up other people’s stuff.
Several teachers in the focus groups talked about the difficulties of children with
ID organising their materials in class, or bringing things to and from school. There was some
difference of opinion regarding whether these behaviours were specific to ADHD, or whether
they reflected many children with ID more generally: “When you’re talking about planning
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and organisation...these are really big issues for these kids. They need step by step; it has to
Teachers also discussed how many children with attention difficulties have limited
working memory. Specifically, they detailed that these children have significant difficulties
with remembering instructions, or that they can only recall the first or last instruction given.
This was also observed out in the yard when asking these children about an incident:
...they can only remember the last event...like they’ll be teasing another kid,
teasing them and teasing them, but if that kid lashes out and hits them, then all they
can remember is “Such and such hit me”. Never mind that they were teasing the other
kid for half an hour. It’s like nothing happened before that. Nothing happened before
Teachers within the focus groups sometimes had difficulty distinguishing behaviours
that were specific to children with ID and attention difficulties, and those that were more
F3, P1: I think you need [some items] on fine and gross motor skills as well. Cos
F3, P1: No, but I think these kids have even more difficulties. Cos their attention
difficulties make it more difficult for them to learn, and stuff like fine motor
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7.2.2 Medication
Some teachers discussed the impact that medication could have on behaviour. They
made references to the positive impact that medication could have, such as the student
“seem[ing] like a different child” (F3, P5) or being able to understand the child’s speech
Other teachers discussed their beliefs about medication, such as its efficacy in the
decision about ceasing medication; the issue of student refusal to take the medication was not
raised.
Comments or concerns that arose from any rating scale item were taken into
consideration, which resulted in some changes being made to the rating scale. In total, 58.5%
of the rating scale items were modified in some way. Twenty-three items were reworded,
generally to add clarity to the behaviour being rated. Eight items were deleted to eliminate
unnecessary duplication. Three of these eight items relating to a child’s ability to concentrate
and were deleted for several reasons. Firstly, these items had asked about the child’s ability to
concentrate over two different periods of time: “The rating scale should be able to capture
whether a child exhibits this behaviour...two different time limits do not add additional
information.” (F5, P2). Secondly, it was reported that the items might cause confusion as they
asked whether the child could concentrate independently or under supervision when no other
items made this distinction. One psychologist also felt that these items would raise a scoring
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Would items 14 and 15, which talk about 5 minutes, somehow get a higher or better
score than 12 and 13 which only talk about 1 minute? Do you see what I mean? It’s
sort of like a scale within a scale... I don’t quite know how you [would] deal with that
(F4, P1).
Concerns were raised in focus group discussions for a further three items but the
decision was made to retain the original wording. These related to small concerns such as
using a different example, or a rewording suggestion: “Avoids making a new mistake when
corrected once... I don’t know if this item is worded positively. The item is fine but maybe
you could reword it.” (F2, P2). Nineteen items had no concerns raised in any of the focus
were raised for a single item. Item 2 on the rating scale, which asks whether the student
speaks at a reasonable volume, was not considered valid by one health professional: “I don’t
think volume of speech is necessarily a hyperactivity symptom” (F1 P1). This professional
noted that talking loudly may be distracting to other students, and may present a challenge to
teachers in terms of classroom management, but believed that this behaviour was not specific
to, or characteristic of, children with attention difficulties. The decision was made to retain
this item, however, due to the number of teachers who referred to this behaviour in their
While several suggestions were made by focus group participants about possible
items that could be added to the scale, the majority of these suggestions were outside the
scope of the current scale being developed. These included suggestions for items relating to
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tics, food fads, sleeping patterns11, social skills and academic achievement. One item was
added to the rating scale based on a suggestion made by a health professional and related to
shifting attention.
The majority of participants felt that the response set selected by the authors was
appropriate. One participant, however, felt that the wording of the response set needed to be
reviewed:
I’m not so much quibbling with the 5 points but I’ve got real trouble with that word
’always’. I mean, how many kids are going to walk from room to room when indoors
always?...Keeps legs and feet still while performing a classroom task or when
listening to a story. I don’t think they make a child who always does those things...I
just don’t think it’s happened in the life of the planet (F4, P1).
The author felt that this participant made a valid point about the response set and its
relationship with the rating scale items. Based on this observation it was decided to change
the response set from a 5-point to a 4-point scale, retaining the initial 4 responses (never,
The general consensus from the focus groups were that the rating scale was easy to
understand and complete, and was not too time consuming. They also commented favourably
on the use of positive wording in the items, with teachers in particular appreciating this
feature. They reported that in psychological assessments and evaluations (particularly for
funding applications) they generally have to focus on the difficulties of the child. Several
teachers commented that this rating scale represented a significant, positive shift from the
11
Items on sleep were developed for the parent scale, but the authors believed that teachers would not be
appropriate informants for this behaviour. This is consistent with other rating scales that have been developed
for teachers and parents, such as the CBCL (Achenbach & Rescorla, 2001) and DBC (Einfeld & Tonge, 2002),
which also include items on sleep only in the parent scale.
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deficit model: “I like the way the items are written in a positive way. It makes you feel less
Following the scale revisions, the T-SAID was once again subjected to the Flesch-
Kincaid test using Flesh 2.0 software (Frink, 2007). The findings indicated a slight
improvement in readability with an index of 61 and a reading grade level of 8.16, confirming
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CHAPTER 8 DEVELOPMENT OF A NEW ATTENTION
RATING SCALE FOR CHILDREN WITH INTELLECTUAL
DISABILITIES: THE SCALE OF ATTENTION IN
INTELLECTUAL DISABILITY (SAID)
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8.1 Declaration
Declaration by co-authors:
(1) they meet the criteria for authorship in that they have participated in the conception,
execution, or interpretation, of at least that part of the publication in their field of expertise;
(2) they take public responsibility for their part of the publication, except for the responsible
author who accepts overall responsibility for the publication;
(3) there are no other authors of the publication according to these criteria;
(4) potential conflicts of interest have been disclosed to (a) granting bodies, (b) the editor or
publisher of journals or other publications, and (c) the head of the responsible academic unit;
and
(5) the original data are stored at the following location(s) and will be held for at least five
years from the date indicated below:
Signature 1
Signature 2
Signature 3
Signature 4
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8.2 Paper commentary
Chapter 8 presents a paper that has been submitted for publication in the American
Journal on Intellectual and Developmental Disabilities. This paper has been formatted to the
specific requirements of the journal. Pages have been re-numbered to provide consistency
Paper 1 is a study examining the psychometric properties of a new teacher rating scale
disability (ID). Teachers of 176 children aged five to thirteen years with idiopathic ID, Down
Syndrome or autism spectrum disorder completed this rating scale. This study addresses an
important gap in the literature as there are currently no reliable or valid rating scales that
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DEVELOPMENT OF A NEW ATTENTION RATING SCALE FOR CHILDREN
Abstract
among children with intellectual disability (ID) as they are in typically developing
populations. Despite this, there is a lack of assessment scales to specifically assess ADHD
symptomatology in children and adolescents with ID. This paper describes the development
with mild-severe/profound ID, indicated that the T-SAID is a reliable and valid measure.
Integrating this scale with neuropsychological and clinical research holds exciting promise
for enhancing our understanding of the nature of attention difficulties within the ID
population.
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Attention-deficit/hyperactivity disorder (ADHD) is a pervasive psychiatric condition
which affects approximately 11% of primary aged school children (Willcutt, 2012). ADHD is
individual’s functioning across different environments, for example, at home and at school
classroom, has an insidious impact on academic attainment (Spira & Fischel, 2005). For
predicts poor reading outcomes in Grade 1 and also in Grade 5, independent of kindergarten
reading-related skills and concurrent levels of hyperactivity (Dally, 2006; Rabiner & Coie,
2000). This would suggest that if inattention is not treated in early years, deficits in academic
performance will become more pronounced with time. To date, the majority of published
impulsivity and hyperactivity characterise many children with developmental delay and
Historically, it was maintained that attention difficulties were part of the presentation
of intellectual disability (ID) (Antshel, et al., 2006; Guerin, et al., 2009) which may in part
have been due to diagnostic overshadowing bias. This term refers to the tendency of
clinicians, in the presence of ID, to regard accompanying mental health issues as less salient
and specific than they would if the child were typically developing (Jopp & Keys, 2001;
Mason & Scior, 2004). A recent and growing body of literature, however, suggests that
children with comorbid ID and ADHD form a distinct subgroup, and that some children who
have ID display few or no difficulties with attention (Hastings, et al., 2005). There is also
suggestion that inattention difficulties may vary depending upon factors such as the uneven
developmental disorders e.g., Fragile X Syndrome (Cornish, Turk, & Levitas, 2007; Turk,
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2011), Down Syndrome (Cornish, et al., 2010; Cornish, Scerif, et al., 2007); Williams
Syndrome (Rhodes, et al., 2011; Rhodes, et al., 2010; Scerif, et al., 2004); and autism
Two diagnostic classificatory tools have been published to assist clinicians in making
diagnoses among individuals with ID: the Diagnostic Criteria for Psychiatric Disorders for
use with adults with Learning Disabilities/Mental Retardation (DC-LD; Royal College of
Psychiatrists, 2001) and the Diagnostic Manual – Intellectual Disability (DM-ID; P. Lee &
Friedlander, 2007). Both recognise the limitations of the ICD-10 (World Health Organization,
decisions when a person has ID, and appreciate that psychiatric conditions may present
differently among adults within this group. These two tools contain differences in their
criteria for ADHD, namely whether all three behaviours (impulsivity, hyperactivity and
inattention) need to be present to make a diagnosis, and the exclusionary criteria used. For
example, the DC-LD allows comorbid diagnoses of autism and ADHD (consistent with the
DSM-5; American Psychiatric Association, 2013) whereas the DM-ID does not (consistent
with DSM-IV-TR criteria, which the DM-ID was based upon). Despite these inconsistencies,
While rating scales are often used to assist with making a diagnosis of ADHD in the
absence of ID (Barkley & Edwards, 2006), their usefulness in diagnosing ADHD symptoms
The Conners Rating Scales – Revised (Conners, 1997) have frequently been used in
studies of children with ID even though their validity for use within this population is
questionable (Guerin, et al., 2009). Two research groups have examined the psychometric
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properties of the Conners Parent Rating Scales-Revised (CPRS-R) and the Conners Teacher
ranging from mild to severe (Deb, et al., 2008; M. L. Miller, Fee, & Jones, 2004; M. L.
Miller, Fee, & Netterville, 2004). The findings suggested that the CPRS-R may be able to
indicate the presence of ADHD in children with borderline intelligence or ID, but the CTRS-
R was unable to do so (Deb, et al., 2008). Both studies reported limitations with its
psychometric properties, including its inter-rater reliability across parents and teachers (Deb,
et al., 2008; M. L. Miller, Fee, & Netterville, 2004). It was also noted that 13 items (46.4%)
on the CTRS-R were dependent upon the child being verbal, thus invalidating the measure
for a significant proportion of children with severe and profound intellectual disabilities who
Shortcomings also exist in rating scales that have been developed for use within the
ID population. The Aberrant Behaviour Checklist – Community (ABC-C; Aman & Singh,
1994) measures a broad range of behavioural and emotional problems. In a review of seven
rating scales among children with ID, it was concluded that the ABC-C was the most reliable
and valid scale for measuring ADHD symptoms in children with ID (M. L. Miller, Fee, &
Jones, 2004; M. L. Miller, Fee, & Netterville, 2004). This was perhaps not surprising,
however, given that the ABC-C was the only measure included in the review that had been
developed for the ID population. Their conclusions are also limited by their lack of
generalisability to the wider population due to the small sample size, exclusion of children
with severe or profound ID, and the high proportion of African Americans in their sample.
A widely used rating scale that measures a broad range of behavioural and emotional
(DBC; Einfeld & Tonge, 1995, 2002). While the DBC was not specifically designed to assess
ADHD symptomatology, it does contain a subset of six items that have face validity for these
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behaviours within the existing item set. Although this subset of items has demonstrated
internal consistency, further psychometric analyses have been limited to the parent version of
the rating scale and not the teacher version (Einfeld & Tonge, 2002).
Classroom Assessment Scale (ADIECAS; Evans, 1975, in Evans & Hogg, 1984) that
(Buckley, et al., 2008; Guerin, et al., 2009), it presents with a number of shortcomings.
Limited replication of the psychometric properties, inconsistent findings regarding the scale’s
factor structure (Evans & Hogg, 1984; Strand, et al., 1990; Turner, et al., 1991), lack of
commercial availability and no normative data may have contributed to its restricted use and
with ID as without (Dekker & Koot, 2003; Feinstein & Reiss, 1996; Hastings, et al., 2005;
Lindblad, et al., 2011), the profile of attention difficulties across known causes of ID is only
starting to be identified and described. The need to develop a rating scale to measure attention
difficulties in these populations has been recognised (Deb, et al., 2008) but not yet adequately
addressed.
capture subtle attention profiles in ID and yet attention difficulties represent core and
pervasive concerns in many children with ID. Therefore, the overarching aim of the present
study was to develop and evaluate the psychometric properties of a novel attention rating
scale to explore the range and severity of everyday inattention, hyperactivity, impulsivity,
Method
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Phase 1a: Development of the New Rating Scale
parents and teachers were identified through a review of the content of existing rating scales,
criteria in the DSM-IV-TR (American Psychiatric Association, 2000), ICD-10 (World Health
Organization, 1992), DC-LD (Royal College of Psychiatrists, 2001) and DM-ID (P. Lee &
Friedlander, 2007). These behaviours were categorised onto concept maps under four
The research team evaluated the concept maps to determine the difficulties that would
be observed in young people with ID. Those behaviours retained were converted into
checklist items in lay language that would be readily understood by parents and teachers. All
items were worded positively as it has been proposed that this improves response rates when
Following these procedures, the list of attention difficulties encompassing the four
headings listed above were organised as a rating scale. The response set consisted of a 4-point
scale where each item is scored using ratings of never, rarely, sometimes and often, with
The new rating scale, the Scale of Attention in Intellectual Disability – Teacher
version (T-SAID), was presented to nine health professionals (three paediatricians and six
psychologists) and nine teachers from special schools via focus group discussions. An initial
activity using the freelist technique (Borgatti, 1999) required participants to think about the
children with ID they had seen in their practice or classroom and to list the behaviours they
had observed in these children that related to hyperactivity, impulsivity, inattention and
working memory. This enabled the research team to gather further behaviours for potential
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inclusion in the rating scale that had not already been identified using the methods described
above. Participants were then asked to evaluate the items in the T-SAID, including the clarity
and expression of the wording, and any behaviours omitted that they believed warranted
inclusion.
Participants
Two hundred and fifteen consent forms were returned by families of children
attending schools in the Melbourne metropolitan area and across regional Victoria, Australia.
Children were eligible to participate in the study if: (1) they were aged between 5 and 13
years; and (2) their most recent cognitive assessment placed their functioning in the
intellectually disabled range (i.e., their cognitive and/or adaptive living skills assessment total
Hollingshead Four Factor Index (Hollingshead, 1975). This measure has been found to yield
comparable information to more recently developed SES measures (Cirino, et al., 2002) but
has the advantages of being simple to complete and less time-consuming. The scale gives a
rating for each parent based on the highest level of education completed and their current
occupation. Scores are averaged across ratings for both parents and an overall score is
Measures
Wechsler, 2003). The WPPSI-III and WISC-IV are established, reliable and valid measures
of intellectual ability with good to excellent internal consistency (α = .85 – .95) and strong
129
test-retest reliability (r = .80 – .95). They were used in this study to determine each child’s
(VABS-II-T; Sparrow, et al., 2005). The VABS-II-T is a reliable and valid measure of
adaptive behaviour with acceptable to excellent internal consistency (α = .74 – .98) and
moderate to very strong test-retest reliability (r = .43 – .97). It was used in this study to
determine the current adaptive functioning of children whose intellectual ability could not be
Conners Rating Scales – Third edition, Teacher Short form (Conners 3; Conners,
2008). The Conners 3 has 39 items and screens for symptoms of ADHD and related
problems/executive functioning, aggression and peer relations. It was developed for use with
typically developing children and has not been validated for children with ID (Conners,
2008). The Conners 3 was completed by each child’s current teacher to determine convergent
2002). The DBC-T is a 93-item checklist designed to assess a broad range of behavioural and
emotional problems in children and adolescents with ID. It has five subscales:
A subset of items measure hyperactivity which was generated based on the face validity of
items that appeared consistent with hyperactive behaviour (Einfeld & Tonge, 2002). The
DBC-T was scored by calculating the mean of the six hyperactivity item ratings, with higher
scores indicating greater difficulties. It was completed by each child’s current teacher to
determine convergent validity with the T-SAID (M. L. Miller, Fee, & Netterville, 2004).
130
Scale of Attention in Intellectual Disability (SAID). The proposed rating scale
inattention, and aspects of working memory. The teacher version (T-SAID) was completed
by the child’s current teacher (provided they had known the child for a minimum of 6
statement on a 4-point scale of never, rarely, sometimes and often, with lower scores on the
Procedure
Ethics approval was obtained from the Monash University Standing Committee on
Ethics in Research Involving Humans, the Victorian Department of Education and Early
and autism specialist schools (n = 2) were invited to assist with recruitment for the study. Of
59.4%. Support groups and community organisations were also approached, asking them to
advertise the study on their web site and seeking permission to contact member families with
a child aged 5 –13 years. Families were sent home an envelope containing a poster,
explanatory statement and consent form. Those who consented to participate returned the
form in a reply-paid envelope. Principals of the schools attended by children recruited via a
support group or community organisation (n = 36) were also contacted, and all consented to
assist with the study. A member of the research team telephoned each consenting family to
determine their child’s eligibility to participate in the study, and to collect demographic and
clinical data.
If a child had been administered a cognitive and/or adaptive living skills assessment
in the past they were asked to provide these results to the research team. A cognitive
131
assessment was conducted if they had not been administered one in the last 18 months
(WPPSI-III) or two years (WISC-IV). If the child’s FSIQ could not be calculated, then the
VABS-II-T Adaptive Behaviour Composite (ABC) was used as a proxy for their IQ score.
Concurrent validity between the ABC and FSIQ has suggested a strong positive relationship
for children with severe and profound ID (r = .65; de Bildt, Kraijer, Sytema, & Minderaa,
2005).
The child’s classroom teacher was mailed a booklet of rating scales. It was a
requirement that each teacher who completed the questionnaires had known the child for a
minimum of six months. Teachers were asked to complete the DBC-T (Einfeld & Tonge,
2002), the Conners 3 (Conners, 2008) and the T-SAID. Questionnaires were returned to the
research team in a reply-paid envelope. Reminder letters or emails were sent to teachers if
questionnaires had not been returned within four weeks, and a second reminder was sent if
random sample of classroom teachers 2 weeks after the first one was returned. The mean
interval between the first and second rating scales being completed was 28 days (SD =
10.41). Teachers who took longer than 50 days to return the second rating scale (n = 12) were
Analysis
As the response set offered little distinction between the rarely and never ratings, it
was decided to collapse these two ratings into a single category. Scores on the T-SAID were
then reversed for analysis so that higher scores were indicative of greater difficulties.
The total score was calculated by taking the mean of all the items (known as the Mean
Item Score, or MIS). This method has a number of advantages over calculating the sum of all
item scores (Taffe, et al., 2008). One advantage is that the MIS may be deconstructed to
132
measure the breadth of behaviours an individual exhibits (the Proportion of Items Checked,
or PIC) and the intensity at which the items are checked for that person (the Intensity Index,
or II). PIC is the proportion of recoded items receiving codes of 1 or 2, indicating that the
Results
The focus groups were analysed in two parts: the freelist activity and the review of the
with ID were extracted from the transcript. Five main themes were extracted: (1) talking
(speed; volume; amount; poor topic maintenance); (2) inability to sit still; (3) limited
attention span/concentration; (4) impulsivity; and (5) executive function difficulties (working
A total of thirty-one items (58.5%) were modified following comments in the focus
group discussions. The reading ease and grade level of the T-SAID was analysed using the
Flesch-Kincaid test (Flesh 2.0 software; Frink, 2007). The T-SAID received a reading ease
score of 61 and a grade level score of 8.16, suggesting an appropriate level of readability.
Study Sample
Of the 181 children deemed eligible to participate in the study, rating scales were
returned for 176; a return rate of 97.2%. The demographic characteristics of the sample are
133
described in Table 2. Almost half the sample (n = 76; 43.2%) had idiopathic ID, 33.5% (n =
59) autism spectrum disorder, and 23.3% (n = 41) Down Syndrome. Results from the
cognitive and adaptive living skills assessments, broken down by degree of ID, are described
in Table 3.
Comorbid Diagnoses
Across the sample, 31 parents (17.6%) reported their child as having at least one
comorbid diagnosis, the most common being ADHD (n = 20; 11.4%). Of the 20 children, 13
were currently taking medication e.g., Ritalin (65.0%), four had never been prescribed
medication (20.0%), and three had taken medication in the past but were not doing so at the
present time (15.0%). Other reported comorbid diagnoses included epilepsy (n = 18; 10.2%)
Item-total and inter-item correlations were calculated for all 46 items of the T-SAID.
Item-total correlations ranged from .16 – .78 and inter-item correlations ranged from .01 – 88.
Understands instructions better if they include non-verbal prompts) were found to have poor
item-total (.45 and .16 respectively) and inter-item correlations (.19 – .47 and .01 – .47). The
decision was made to remove these two items from the rating scale, leaving 44 items.
The Cronbach’s alpha for the T-SAID total score indicated it has excellent internal
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Validity of the T-SAID
The content validity of the rating scale items was established via the method of item
derivation and use of focus group discussions to evaluate the scale as described above. The
general consensus from the focus group discussions suggested that the T-SAID was easy to
understand and complete, and was not too time consuming. Participants commented on the
usefulness of the examples that accompanied some of the items as it enhanced their
understanding of the behaviour they were being asked to rate. They also spoke favourably of
the use of positive wording in the items, with teachers in particular appreciating this feature.
Several teachers commented that this rating scale represented a significant, positive shift
from the deficit model: “I like the way the items are written in a positive way. It makes you
Convergent validity was measured by examining the raw scores for the hyperactivity
items on the DBC-T (n = 173) and the Conners 3 inattention and hyperactivity subscales. To
validity, the internal consistency of the hyperactivity and inattention subscales with the
current sample was calculated. It was found to be good to excellent (α = .88 – .90) and
therefore deemed to work reasonably well in an ID population. The T-SAID had strong
convergent validity with both the DBC-T and the Conners 3 suggesting that these different
scales measured the same construct, as shown in Table 4. The divergent validity of the T-
SAID was measured by comparing it with the total score on the VABS-II-T (n = 109). The T-
SAID had moderate divergent validity with the ABC, suggesting a lack of association
between these measures and that they measured different constructs. Higher adaptive
functioning was associated with fewer problems with attention, hyperactivity, impulsivity and
135
Although it is beyond the scope of this study to evaluate the properties of the T-SAID
as a screening tool for ADHD, the discriminant validity was examined by comparing those
children with a comorbid ADHD diagnosis (n = 20) and those without (n = 156). A
significant difference in the total score was found across groups (t174 = 2.56, p < .01) with
Regression analyses were conducted to examine the T-SAID total score across degree
of ID, controlling for age, gender, and SES. As shown in Table 5, the mean item score (MIS)
on the T-SAID (possible range 0-2) was greater by .49 for those with severe or profound ID
than for those with mild ID, but only by .06 for those with moderate ID. A similar pattern
was evident in the regressions of the proportion of items checked (PIC) and intensity index
(II; both on a 0-1 scale), indicating that the two possible reasons for higher MIS (i.e., a
greater breadth of behaviours exhibited and these behaviours being noticeably more severe)
are both in evidence among those with severe or profound ID. On average, 25% (p < .001)
more items were marked sometimes or rarely/never for those with severe or profound ID than
for those with mild ID, and of these ‘checked’ items, 24% (p < .001) more were marked at
the more intense rarely/never level for those with severe or profound ID than for those with
mild ID. There was also a significant negative effect for age, with the MIS decreasing by .07
with every year of aging. This suggests that as children age their attention improves, with
136
Discussion
The findings of the present study suggest that the 44 item T-SAID is a reliable and
valid scale measuring attention, hyperactivity, and impulsivity in children with ID. The
advantages of this new measure over existing measures include: (1) no assumption of
academic competence in the scale items (e.g., items relating to literacy or numeracy) which is
appropriate given children with ID may not have the skills to do such tasks even with
assistance; (2) the use of positively worded items which are thought to improve response
rates when reporting on children’s behaviours (Goodman, 1997); and (3) the inclusion of
items related to aspects of working memory given its strong association with attention
(Scerif, 2010; Steele, et al., 2012). Previously, capturing attention profiles or ‘signatures’ in
children with ID was dependent either upon rating scales that were standardised on children
from non-ID populations but who had ADHD-like symptoms e.g., Conners Rating Scales, or
on more generalised rating scales of atypical behaviours but not especially focused on
Preliminary results suggest that the T-SAID may have the ability to discriminate
between children who have ADHD and those who do not, although its efficacy as a screening
tool is yet to be evaluated. It should be noted, however, that in this study the ADHD
diagnosis was determined via parent report only. As the majority of clinicians use rating
scales when considering a diagnosis of ADHD (Chan, et al., 2005), the availability of a
reliable and valid tool like the T-SAID may increase clinician confidence in making this
diagnosis when working with children who have ID. Its strong convergent validity with
existing rating scales i.e., the DBC-T and Conners 3, further suggests that the T-SAID
137
Regression analyses suggested that children with severe or profound ID had greater
difficulties with attention, hyperactivity and impulsivity, with a broader range of behaviours
and greater intensity being exhibited (accounting for 16.3 – 19.3% of the variance). This is
consistent with the findings of Rojahn and colleagues (2010), who reported that children and
adolescents with severe and profound ID had higher levels of hyperactivity. Given the
and profound ID – in terms of maximising their learning potential and vocational options
(Einfeld et al., 2006), additional difficulties with attention would further compromise their
capacity to realise these long-term outcomes. This finding therefore has implications for
teachers as it may result in the need for more complex behaviour management plans to assist
children with severe or profound ID in the classroom. The analyses also suggested that as
children get older they have fewer difficulties with attention, hyperactivity and impulsivity, a
finding consistent with research into typically developing children (Faraone, et al., 2006).
attention difficulties in children with ID, more externalising behaviours were raised and
fewer behaviours relating to inattention. This is consistent with research which suggests that
teachers are less likely than parents to report and/or identify inattentive behaviours (Murray
et al., 2007). It highlights the importance of making teachers more aware of the problem of
inattention in the classroom – both through improved identification and greater understanding
of the impact it has on students. Even though these behaviours may not be as readily
observable or disruptive to others, they can still have a significant impact on individual
limitations and directions for future research. Participants in the focus group discussions
consisted of teachers from schools for children with mild ID but not those working in schools
138
for children with moderate, severe or profound ID. Given that these teachers are likely to
have had experience working across settings, however, this is unlikely to have had an impact
on the representativeness of the items for children with moderate, severe or profound ID.
Convergent validity was measured by asking teachers to complete several rating scales that
replication. Finally, future research is needed to determine the psychometric properties of the
parent version (P-SAID) and the validity of the SAID in adolescent populations.
A strength of the current study is the high return rate of the T-SAID from teachers.
The return rates from teachers in the area of child psychopathology are often low (Bishop,
Laws, Adams, & Norbury, 2006; Lecavalier, et al., 2006; J. R. Sullivan & Riccio, 2007). The
high return rate suggests acceptability of the scale itself given the teachers were given no
incentive to return the booklet. A second strength is the rigorous development of the items in
the T-SAID. The integrated approach of reviewing the content of existing rating scales and
diagnostic manuals, gathering data from behaviour observations, reviewing relevant research
papers, and using focus group discussions during the drafting process all ensured sound
content validity for the items chosen. A third strength is that the T-SAID was developed
specifically for the population of interest. Researchers and clinicians may consider using this
measure as it focused on the particular attention difficulties experienced by children with ID,
as opposed to existing measures designed for typically developing children which may
first measure developed specifically for children with ID, facilitating reliable and valid
measurement of attention, impulsivity and hyperactivity for research and clinical purposes.
139
Potential applications of the T-SAID include use in research examining ADHD
that the development of this disability specific measure will enhance identification, diagnosis
and subsequent access to treatment, along with improvements in the development and
140
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Table 1
Examples of Items from the Scale of Attention in Intellectual Disability – Teacher Version
(T-SAID)
up)
149
Table 2
Sample Demographics
Total sample Mild ID (n = Moderate ID Severe/profound
Age
Range 5 – 13 5 – 12 5 – 12 5 – 13
SESa
Range 8 – 69 11 – 67 8 – 69 14 – 67
developmental
school
mainstream school
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Table 3
Scores from the Cognitive and Adaptive Living Skills Assessments by Degree of ID
(n = 27)
FSIQ
Range 56 – 70 40 – 54 40
WISC-IV
Range 53 – 75 45 – 71 45 – 47
Range 63 – 86 45 – 75 45 – 59
Range 52 – 88 50 – 74 50 – 52
(10.83)
Range 50 – 94 50 – 78 50 – 53
WPPSI-III
Range 53 – 77 48 – 61 *
Range 53 – 81 47 – 61 *
VABS-II-T
151
ABC M (SD) 59.55 (6.71) 54.19 (9.18) 41.78
(13.17)
Range 42 – 70 26 – 74 20 – 64
(10.15)
Range 54 – 74 42 – 74 25 – 60
(10.17) (12.60)
Range 49 – 84 37 – 89 32 – 76
(11.23)
Range 38 – 78 36 – 80 21 – 62
Note. WISC-IV = Wechsler Intelligence Scale for Children – Fourth edition; WPPSI-III =
152
Table 4
Reliability Validity
Convergent Divergent
consistency ICC (95% CI) inattention (r) hyperactivity (r) hyperactivity (r) (r)
(α)
T-SAID total .98 . 96* (.90 – .99) .66* .69* .67* - .43*
* p < .001.
153
Table 5
Beta Coefficients of Regressions of the Mean Item Score (MIS), the Proportion of Items
Checked (PIC) and the Intensity Index (II) of the Teacher Version of the Scale of Attention in
MIS PIC II
* p < .001.
154
CHAPTER 9 THE SCALE OF ATTENTION IN
155
9.1 Declaration
In the case of Chapter 9, contributions to the work involved the following:
Declaration by co-authors:
(1) they meet the criteria for authorship in that they have participated in the conception,
execution, or interpretation, of at least that part of the publication in their field of expertise;
(2) they take public responsibility for their part of the publication, except for the responsible
author who accepts overall responsibility for the publication;
(3) there are no other authors of the publication according to these criteria;
(4) potential conflicts of interest have been disclosed to (a) granting bodies, (b) the editor or
publisher of journals or other publications, and (c) the head of the responsible academic unit;
and
(5) the original data are stored at the following location(s) and will be held for at least five
years from the date indicated below:
Signature 1
Signature 2
Signature 3
Signature 4
156
9.2 Paper commentary
Chapter 9 presents a paper that has been submitted for publication in the American
Journal on Intellectual and Developmental Disabilities. This paper has been formatted to the
specific requirements of the journal. Pages have been re-numbered to provide consistency
Paper 2 is a companion to the previous paper and examines the factor structure of the
new teacher rating scale that has been developed: the Scale of Attention in Intellectual
Disability (SAID). Studies that have measured ADHD symptoms within children with ID
have often used measures that were designed for children who were typically developing in
the absence of any reliable or valid alternatives. Shortcomings of these rating scales when
used with children with ID include inconsistencies in the factor structure and the
inappropriateness of some of the rating scale items. A factor analysis of the SAID was needed
to determine whether the rating scale items grouped together into constructs that could
157
THE SCALE OF ATTENTION IN INTELLECTUAL DISABILITY (SAID): FACTOR
DISABILITIES
Abstract
psychiatric condition but one that is inconsistently identified in the context of intellectual
disabilities (ID). Although ADHD ratings scales exist, few if any can reliably measure the
range and severity of behaviours within the ID population. Limitations of these scales include
the inappropriateness of some items and the lack of replicability of the factor structure. In an
attempt to remedy this problem, a novel scale measuring attention and hyperactivity specific
exploratory factor analysis of the teacher version (T-SAID) yielded a four factor solution.
The results indicate that the T-SAID is a valid tool for use with children with ID.
158
The past 20 years has seen considerable progress in understanding difficulties with
attention and hyperactivity among children with intellectual disability (ID). Some earlier
studies suggested that ADHD symptoms (e.g., high levels of inattentive and
comorbid psychiatric diagnosis (Burack, et al., 2001; Handen, et al., 1997). Conversely, other
studies argued that mental health issues were underdiagnosed due to the complexity of
overshadowing (Jopp & Keys, 2001; Mason & Scior, 2004). These conflicting views
culminated in a comprehensive review by Antshel and colleagues (2006), who concluded that
ADHD was a valid disorder in ID but emphasised that more studies were needed to further
identify the complexities of these comorbid diagnoses across the areas of treatment,
Research from the neuropsychological field has led the way in demonstrating not only
that ADHD symptomatology is present in children with ID, but that at the cognitive level
there are disorder-specific profiles of attention functioning that differentiate one group from
another for example autism spectrum disorder (e.g., Christ, et al., 2011; Landry & Bryson,
2004), Fragile X Syndrome (e.g., Cornish, et al., 2013; Cornish, Scerif, et al., 2007),
Williams Syndrome (e.g., Breckenridge, et al., 2013; Rhodes, et al., 2011), and Down
Syndrome (e.g., Breckenridge, et al., 2013; Cornish, Steele, et al., 2012). Furthermore, recent
parent surveys suggest that ADHD symptomology in these groups is at least as common as
that reported in children with ADHD with no intellectual impairment (Neece, et al., 2011).
Indeed, in the case of autism spectrum disorder, Fragile X Syndrome and Williams
Syndrome, it would appear that ADHD symptoms are markedly greater with prevalence rates
as high as 59% (Goldstein & Schwebach, 2004), 62% (Bailey, et al., 2008) and 100%
159
(Rhodes, et al., 2011) respectively within these ID populations, compared with 6-7% of
Although there is now accruing consensus that ADHD behaviours have a significant
and long lasting impact in children with ID, there is currently no one measure that can
capture different severity and profiles of inattentive and hyperactive behaviours in children
specifically with ID. The Conners Rating Scales (CRS; Conners, 1989, 1997, 2008) and the
Child Behaviour Checklist (CBCL; Achenbach, 1991; Achenbach & Rescorla, 2001) are
amongst the most commonly used both clinically and in the research literature. The parent
version of these scales have been used to examine ADHD symptoms in studies of children
with idiopathic ID (Deb, et al., 2008; M. L. Miller, Fee, & Jones, 2004; M. L. Miller, Fee, &
Netterville, 2004), Fragile X Syndrome (Cornish, et al., 2013; Farzin et al., 2006), autism
spectrum disorder (Hartley, et al., 2008), and Williams Syndrome (Rhodes, et al., 2011). Few
studies have used the teacher version of these scales (Buckley, et al., 2008; M. L. Miller, Fee,
& Netterville, 2004) and all used samples of children with idiopathic ID.
One of the core disadvantages of both the CRS and CBCL scales is that they were
developed for children who function within normal range of IQ; they were not specifically
developed with the intention of being used to rate the behaviours of children with ID. One of
the key issues, therefore, is the appropriateness of the items for this population. Literacy and
numeracy skills cannot be assumed among children with ID, and yet both the CRS and the
CBCL contain several items on their attention subscales that relate to these skills such as Not
reading up to par or Has difficulty learning. Further, such items offer poor discriminant
validity as limited academic achievement can be observed in many children with ID,
A second key issue to consider when evaluating a rating scale is the replicability of
the factor structure in independent studies. This is particularly important when using them in
160
a population for which they were not originally designed or validated. A study by Deb and
colleagues (2008) examined the factor structure of the CRS - R (Conners, 1997) among
children with either borderline intelligence (i.e., an IQ of 70 – 79) or mild to severe ID. While
the same factors were extracted for the parent version (i.e., inattention, hyperactivity and
conduct problems), the teacher version extracted less distinct factors with four items having
cross loadings, and five items with face validity for ADHD symptomatology loading on the
conduct problems factor. The authors concluded that the teacher version was not
recommended as a screening tool for ADHD symptomatology among children with ID. Two
studies by Pandolfi and colleagues (2009, 2012) examined the factor structure of the CBCL
among toddlers and children with autism spectrum disorder, although it should be noted that
over one third of the sample were high functioning and therefore the conclusions that can be
drawn on the validity of this structure within the ID population can only be viewed as
tentative. Further, these studies were restricted to the parent version of the CBCL and did not
Therefore, the inappropriateness of some rating scale items and limited replicability of
the factor structure suggest that both the CRS and CBCL have significant limitations in their
ability to reliably identify ADHD symptoms within the ID population. Despite these issues,
these scales continue to be used with children who have ID in the absence of any reliable or
ID and across different syndrome aetiologies, we have developed a new rating scale – the
Scale of Attention in Intellectual Disability (SAID) – which, for the first time, has items
related to ADHD symptomatology that specifically relate to the ID population. The reliability
and validity of this measure have been described in Paper 1 (this volume). In this paper we
focus on evaluating the factor structure of the Scale of Attention in Intellectual Disability -
161
Method
Participants
Two hundred and fifteen consent forms were returned by families of children aged 5
to 13 years attending schools in the Melbourne metropolitan area and across regional
Victoria, Australia. Further details about the sample and recruitment into the study are
Measures
scale consists of 44 items that tap three core domains: hyperactivity/impulsivity, inattention,
and aspects of working memory. The teacher version (T-SAID) was completed by the child’s
current teacher (provided they have known the child for a minimum of 6 months). A parent
scale of never, rarely, sometimes and often, with lower scores on the T-SAID relating to
greater difficulties.
Procedure
Ethics approval was obtained from the Monash University Standing Committee on
Ethics in Research Involving Humans, the Victorian Department of Education and Early
The rating scale was developed firstly by identifying behaviours salient to children
with ID through a combination of reviewing items from existing rating scales, drawing on
criteria in the DSM-IV-TR (American Psychiatric Association, 2000), ICD-10 (World Health
Organization, 1992), DC-LD (Royal College of Psychiatrists, 2001) and DM-ID (P. Lee &
Friedlander, 2007). Items were then developed by the research team and presented to focus
groups of health professionals and teachers for their comment and feedback.
162
A community survey followed development of the new rating scale. Participant
selection was via a three-stage process described in greater detail in Paper 1 (this volume).
Briefly, families were approached to participate in the study via mail outs from schools
(following permission from the school principal). Support groups and community
organisations were also approached, asking them to advertise the study on their web site and
seeking permission to contact member families with a child aged between 5 and 13 years.
Families who consented to participate in the study returned a consent form to the research
Eligibility to participate was determined via a telephone interview with the family
which included collection of demographic and clinical data, and assessment results. Children
were eligible to participate in the study if: (1) they were aged between 5 and 13 years; and (2)
their most recent cognitive assessment placed their functioning in the intellectually disabled
range (i.e., their cognitive and/or adaptive living skills assessment total score was 70 or
below).
For those children eligible to participate in the study, their classroom teacher was then
mailed a booklet of rating scales to complete which included the T-SAID. It was a
requirement that each teacher who completed the questionnaires had known the child for a
minimum of 6 months. Rating scales were mailed back to the research team in a reply-paid
Analysis
A number of factor analytic solutions were considered when examining the T-SAID
data. A principal components factor analysis was used, with oblique rotation chosen given the
assumption that there was a correlation across factors (Tabachnick & Fidell, 2001). The
examination of the scree plot (Cattell, 1966), interpretability of the factors, the preference for
163
a simple structure, the generation of discrete factors with little overlap, and the rejection of
analyses that only had a few items loading onto a factor. Given the sample size in this study,
loadings at or above .50 were selected for inclusion of an item in interpreting each factor
Results
Of the 181 children deemed eligible to participate in the study, rating scales were
returned for 176 yielding a return rate of 97.2%. Of these, 114 were male and 62 were female
with a mean age of 9.15 years. The children included in the sample had a diagnosis of autism
intellectual disability (n = 76; 43.2%). The majority of children had either a mild (n = 62;
35.2%) or moderate intellectual disability (n = 79; 44.9%), with a smaller proportion being in
the severe/profound range (n = 27; 15.3%)12. Further details about the sample, including
Communalities for the 33 items loaded on the four factors were all at or above .50.
The Kaiser-Meyer-Olkin measure of sampling adequacy was high at .95, and the Bartlett’s
test of sphericity was significant (χ2 (946) = 6541.26, p < .001). Taken together, these results
suggest that the data satisfied the assumptions for factor analysis. The results of this analysis
12
Degree of ID based on cognitive ability was unable to be obtained for 8 children
164
Thirty-three of the items retained for analysis loaded onto one of the four factors, with
loadings from .50 to .87 accounting for 62.8% of the variance. There were no significant
cross loadings on any of the factors, suggesting a low shared variance across the variables.
Factor 1 accounted for 49.7% of the variance and consisted of items related to hyperactive
Factor 2 accounted for 4.1% of the variance and consisted of behaviours related to sustained
and selective attention. This subscale was therefore labelled Inattention. Factor 3 accounted
for 5.6% of the variance and consisted of behaviours relating to language. This subscale was
therefore labelled Verbal Communication. Factor 4 accounted for 3.4% of the variance and
subscale was therefore labelled Following Instructions. The internal consistency of these
subscales was excellent for the hyperactivity/impulsivity and inattention subscales (α = .91 –
.94), and good for the verbal communication and subscales (α = .79 – .82).
Discussion
The current study examined the factor structure of a new rating scale for use among
children with intellectual disability: the Scale of Attention in Intellectual Disability – Teacher
version (T-SAID). Four factors were extracted using exploratory factor analysis in this study.
As expected, Hyperactivity/Impulsivity and Inattention were extracted, being the two core
volume and pace of speech, making requests and retaining information. The fourth subscale,
rules.
While the extracted Hyperactivity/Impulsivity and Inattention factors support the two
dimensional model of ADHD (American Psychiatric Association, 2013), there are few factor
165
analytic studies that we can compare these findings to, as most of the available rating scales
designed for or used with children with ID have only a hyperactivity subscale. It has
similarities with validation studies using the CBCL (Pandolfi, et al., 2009, 2012) and the CRS
– R (Deb, et al., 2008) which both have attention and hyperactivity subscales. The four factor
structure of the T-SAID, however, suggests that there are other elements which may also
need to be considered. Given these children may present with additional complexities, such
as limited or no language or a physical disability, the nature of ADHD symptoms may present
The rating scale items generated for the T-SAID were based on diagnostic
classificatory tools, descriptive behaviours reported in published studies, and focus group
feedback suggesting that they were representative of hyperactive, impulsive and inattentive
behaviours observed in children with ID. An item such as Stays within the school grounds
during the day was therefore expected to load onto the Hyperactivity/Impulsivity factor,
consistent with the notion that a child who is impulsive might forget about school rules or
safety and abscond from the school grounds. In the current analysis, however, the item loaded
together with a group of items about understanding and carrying out instructions (Following
Instructions) therefore suggesting that among children with ID this behaviour might relate to
something else such as compliance around obeying the rules, and perhaps understanding the
rules. Qualitatively, some teachers from schools for children with moderate, severe or
profound ID commented that this item did not apply to the child they were rating as their
school had high fences and/or required a security code to exit. The child was therefore not
given the opportunity to demonstrate this behaviour as there was no way they could leave or
abscond. So it is also possible that this item could be interpreted differently depending on the
166
The extraction of an Inattention factor represents an exciting development in the study
of ADHD symptoms among children with ID. Recent research integrating attentional
processes in boys with Fragile X Syndrome (Cornish, Cole, Longhi, Karmiloff-Smith, &
Scerif, 2012; Cornish, et al., 2013) highlighted the importance of understanding both the
cognitive markers of inattention and the ways they map across into classroom behaviours.
neurodevelopmental disorders, can only be enriched by using rating scales that are
standardised and validated for the population of interest. For the first time, the T-SAID will
Using the T-SAID to identify inattentive behaviours in young children with ID also
has important implications for academic achievement. While recent research has shed some
light on the different developmental trajectory in literacy acquisition for children with Down
and Williams Syndromes (Steele, Scerif, Cornish, & Karmiloff-Smith, 2013), research into
the mediating role of attention on academic achievement among children with ID is still
wanting. By identifying the specific behaviours impacting on the child’s ability to attend to
tasks, the T-SAID can help guide behaviour management plans and interventions that are
weaknesses for that child. In turn, this will enable the scaffolding of strategies that can be
used by the child to more rapidly acquire literacy and numeracy skills in the classroom.
The Verbal Communication factor contained items that a priori were believed to have
face validity across behaviours reflecting ADHD symptomatology and aspects of working
memory. It is logical that these items grouped together, however, as all the items inferred the
need for verbal ability in order to exhibit the behaviour. This recognises that verbal skills
cannot be assumed among children with ID, as children with certain neurodevelopmental
disorders (e.g., autism spectrum disorder) and/or severe/profound ID may be nonverbal. The
167
T-SAID therefore overcomes the scoring dilemma posed by rating scales such as the CRS
(Conners, 1989, 1997, 2008) and CBCL (Achenbach, 1991; Achenbach & Rescorla, 2001)
where items related to verbal ADHD symptoms such as Talks too much or too fast cannot be
scored and thus subscale scores cannot be calculated. Children who are nonverbal would
simply receive a score of 0 as they would not have the ability to demonstrate any of the skills
in this subscale, an approach used by other disability specific measures such as the
A core strength of the current study is that analysis of the T-SAID extracted factors
that are consistent with ADHD symptomatology. Preliminary analyses in Paper 1 (this
volume) suggested that the T-SAID total score has discriminant validity across children who
have ADHD and those who do not, although its efficacy as a screening tool is yet to be
evaluated. Another strength is that the factor analysis extracted a Verbal Communication
factor, thus recognising the importance of considering children who are nonverbal; a
shortcoming identified in the CRS – R (Deb, et al., 2008) that was not addressed in the more
It should be noted that the participants-to-items ratio for factor analysis is adequate in
the current study. While the 10:1 ratio of participants-to-items was recommended in the past
(Tabachnick & Fidell, 2001), there is agreement in the literature that this is no longer
psychopathology that have used similar ratios in their factor analyses. A study by Deb,
Dhaliwal and Roy (2008) which drew upon a sample of children with ID or borderline
intelligence conducted a factor analysis using the Conners and had a 5:1 ratio (151 children:
27 items). A study by Norris and Lecavalier (2011) which factor analysed the NCBRF using
a sample of children with autism also had a 5:1 ratio (399 children: 76 items). Another recent
168
study conducted by Pandolfi and colleagues (2012) drew upon a sample of children with
autism using the CBCL had a 1:1 ratio (122 children: 118 items).
Future studies need to look at the stability of this factor structure across different
across diagnoses (Cornish, Scerif, et al., 2007). It may be, as with the Aberrant Behaviour
Checklist – Community (Aman & Singh, 1994), that different factor structures exist across
neurodevelopmental disorders (Brinkley, et al., 2007; Sansone et al., 2012), or the factor
structure may remain constant irrespective of diagnosis. The modest sample size of this study
also necessitates replication with a larger sample to further support the findings from this
factor analysis. An examination of the P-SAID is also needed to determine whether the factor
The findings of this study suggest that the T-SAID is a valid scale for measuring
hyperactivity/impulsivity and inattention among children with ID. The findings lend support
to the notion that DSM-5 ADHD subtypes (American Psychiatric Association, 2013) are
valid among children with ID, although the clinical behaviours observed may be different
within this population. Some items that relate to ADHD symptomatology in typically
developing children loaded onto different factors in the present study. This reinforces the
value of developing rating scales specific to children with ID as the items give an accurate
the T-SAID may assist clinicians and researchers to more reliably identify these behaviours,
which may aid with assessment and diagnosis within this population.
169
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Table 1
Principal Components Factor Solution for T-SAID Items
Factor I Factor II Factor III Factor IV
Hyperactivity/impulsivi Loading Inattention Loading Verbal Loading Following Loading
ty communication instructions
1 Plays quietly inside .65 21 Returns to task .85 44 Verbally repeat 1 .87 41 Carry out one .70
after distracted part instruction part instruction
13 Keeps legs to self .62 19 Maintains attention .82 45 Verbally repeat 2 .82 40 Understands .65
without rewards part instruction instructions <10
words
4 Walks rather than .56 12 Persists for 2 .79 46 Recall main .76 37 Stays in school .61
runs minutes points of story grounds
33 Waits until called on .56 23 Timely completion .75 3 Speaks reasonable .73 42 Carry out two .59
of work pace part instruction
10 Keeps hands to self .55 11 Concentrates for 2 .73 16 Stays on topic .67
minutes
25 Waits in line .55 24 Does not get .71 2 Speaks reasonable .65
distracted volume
6 Stays in own seat .54 15 Gives attention .65 28 Asks before .60
joining in
26 Waits his/her turn .52 22 Completes work .64 29 Asking before .58
accurately taking
27 Takes turns playing .50 20 Maintains attention .59 34 Does not interrupt .54
when interested
18 Completes an .54
activity
8 Keeps legs still .50
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CHAPTER 10 EVALUATION OF A NEW ATTENTION
INTELLECTUAL DISABILITY
177
10.1 Declaration
In the case of Chapter 10, contributions to the work involved the following:
Declaration by co-authors:
(1) they meet the criteria for authorship in that they have participated in the conception,
execution, or interpretation, of at least that part of the publication in their field of expertise;
(2) they take public responsibility for their part of the publication, except for the responsible
author who accepts overall responsibility for the publication;
(3) there are no other authors of the publication according to these criteria;
(4) potential conflicts of interest have been disclosed to (a) granting bodies, (b) the editor or
publisher of journals or other publications, and (c) the head of the responsible academic unit;
and
(5) the original data are stored at the following location(s) and will be held for at least five
years from the date indicated below:
Date
Signature 1
Signature 2
Signature 3
178
10.2 Paper commentary
Chapter 10 presents a paper that has been submitted for publication in the Journal of
Autism and Developmental Disorders. This paper has been formatted to the specific
requirements of the journal. Pages have been re-numbered to provide consistency throughout
the thesis.
children with autism spectrum disorder, 41 children with Down Syndrome and 76 children
with idiopathic intellectual disability using data from the psychometric and factor analytic
studies (Papers 1 and 2). While neuropsychological research has helped enhance our
less is known about the behavioural phenotype due to limited research, inconsistent findings,
and the use of rating scales that were not appropriate for the population. More research was
needed to investigate the behavioural phenotype of ADHD symptoms across children with
179
EVALUATION OF A NEW ATTENTION RATING SCALE ACROSS
INTELLECTUAL DISABILITY
Abstract
rating scales developed for those who have intellectual disability continues to be a gap in
knowledge. This study examined these behaviours in 176 children with autism spectrum
disorder (ASD), Down Syndrome, or idiopathic ID using a newly developed teacher rating
scale, the Scale of Attention in Intellectual Disability. Findings suggested that children with
ASD had a significantly greater breadth of hyperactive/impulsive behaviours than those with
Down Syndrome or ID. These findings support existing research suggesting differing profiles
specific profiles has implications for developing strategies to support students with ID in the
classroom.
Key words: autism spectrum disorder, attention-deficit hyperactivity symptoms, rating scale,
180
The acquisition of skills such as the ability to sustain attention on a task, inhibit
impulsive actions and outbursts, and maintain attention in the presence of distractors are all
important developmental milestones and help predict academic outcomes (Metcalfe, Harvey,
& Laws, 2013). Children with significant deficits in these areas may be diagnosed with
attention-deficit hyperactivity disorder (ADHD) which is associated with adverse long term
outcomes such as lower academic achievement (Barkley, et al., 2006; Polderman, et al.,
2010), friendship difficulties (Normand, et al., 2007) and lower socioeconomic status (Joseph
Biederman et al., 2012). Considerable research has focused on identification, treatment, and
interventions for children with ADHD in an effort to ameliorate these outcomes, at least
Comparatively less research has examined the impacts of this disorder in children
with intellectual disability (ID). This may be due to the mistaken belief that attention
difficulties were part of the presentation of ID (Antshel, et al., 2006; Guerin, et al., 2009), a
phenomenon known as diagnostic overshadowing bias. This term refers to the tendency of
clinicians, in the presence of ID, to regard accompanying mental health issues as less salient
and specific than they would if the child were typically developing (Jopp & Keys, 2001;
Mason & Scior, 2004). Another contributing factor may be the exclusion criteria in the DSM-
IV-TR (American Psychiatric Association, 2000) which did not allow clinicians to diagnose
The beginning of this century saw momentum starting to gather in the field of
ADHD symptoms among individuals with ID (e.g., Antshel, et al., 2006; Chadwick, et al.,
understanding in this area by challenging the notion that children with ID and attention
181
difficulties formed a homogenous group, and have since suggested that there are divergent
(e.g., Cornish, Scerif, et al., 2007; Scerif, et al., 2012). Further, this research has revealed that
while rating scales and structured interviews may present behavioural symptoms of
inattention as being similar across disorders, these may not necessarily translate into identical
cognitive attention mechanisms (see Cornish & Wilding, 2010 for a comprehensive review).
attention; Petersen & Posner, 2012) has provided us with an even richer understanding of
these differences to help us further understand the unique challenges faced by children across
neurodevelopmental disorders.
The current study focuses on children with two neurodevelopmental disorders that have
contrasting profiles of hyperactivity and inattention: Down Syndrome and autism spectrum
disorder. The selection of these two groups was guided by the high prevalence of ADHD
symptomatology in children with these disorders (e.g., Cornish, Steele, et al., 2012; Ekstein,
et al., 2011; Rommelse, et al., 2010; Witwer & Lecavalier, 2010). Down Syndrome (DS) is
the most common genetic syndrome causing ID due to a third copy of chromosome 21
(trisomy 21; McInerny, et al., 2009). Autism spectrum disorder (ASD) is a childhood-onset
70-80% have severe cognitive delays, many functioning in the moderate to severe ID range
(Fombonne, 2005).
At the behavioural level, recent studies have suggested a high proportion of children
in both groups have ADHD symptoms (Ekstein, et al., 2011; Mahan & Matson, 2011; Witwer
& Lecavalier, 2010). Children with ASD and DS have both been identified as having
difficulties with inattention (Cornish, Steele, et al., 2012; Estes, et al., 2007; Papaeliou, et al.,
182
2012; Sinzig, et al., 2009; van Gameren-Oosterom, et al., 2011), but difficulties with
hyperactivity have only been reported in children with ASD (Estes, et al., 2007; D. O. Lee &
Ousley, 2006; Sinzig, et al., 2009). Within the ASD group, some studies have suggested
ADHD symptoms of similar severity across the spectrum (Kaat, et al., 2013; Mahan &
Matson, 2011; Witwer & Lecavalier, 2010). Others have suggested that these symptoms are
more severe in children with ASD and ID than those who are high functioning (Holtmann,
At the cognitive level, sustained attention has been identified as an area of strength in
both groups (Breckenridge, et al., 2013; Cornish, Scerif, et al., 2007; Johnson, et al., 2007). In
the area of selective attention, children with ASD have been reported to perform comparable
to (Iarocci & Burack, 2004) or better than (Jarrold, et al., 2005; Joseph, et al., 2009) their
developmental trajectory for individuals with DS where toddlers perform similarly to their
typically developing peers (matched for mental age), but that this skill deteriorates in
As demonstrated above, while research at the cognitive level has broadened our
disorders, the behavioural phenotype has shown less evidence of progressing forward. This
has been compounded by limited and inconsistent findings across studies which may be due
studies have often used measures developed specifically for children with ID (although see
Hooper, et al., 2008 who reported that even when using simple tasks the floor effects
precluded skills from being measured in some children with severe or profound ID) whereas
the majority of behavioural studies have used rating scales designed for typically developing
children such as the Conners Rating Scales (Conners, 1989, 1997, 2008) or the Child
183
Behaviour Checklist (Achenbach, 1991; Achenbach & Rescorla, 2001). Few of the studies
cited above (i.e., Estes, et al., 2007; Kaat, et al., 2013; Witwer & Lecavalier, 2010) utilised a
rating scale that has been developed for children with ID such as the Aberrant Behaviour
Checklist (Aman & Singh, 1994). Given that children with ID may present with ADHD
symptoms at the behavioural level that are quite different to those who are typically
developing (Freeman, Gray, Taffe, & Cornish, 2013a), the sensitivity of rating scales used to
capture ADHD symptoms in many of the studies cited above therefore need to be called into
question. This was also noted by Witwer and Lecavalier (2010), who reported that the
behaviours Interrupts others and Pushes their way into groups were frequently endorsed by
parents of children with ASD and ID but questioned whether these behaviours were a
function of the children’s deficits in social skills, rather than being ADHD symptoms per se.
This highlights the importance of using rating scales containing items appropriate to the ID
population.
represented a step forward, our understanding of these symptoms at the behavioural level has
been clouded by limited research, inconsistent findings and use of rating scales that are not
appropriate for the population. In the present study, we aimed to compare the range of ADHD
symptoms in children with ASD, DS and idiopathic ID ranging from mild to profound
impairment using a new attention rating scale, the Scale of Attention in Intellectual Disability
(SAID; Freeman, et al., 2013a). It was hypothesized that different attention and activity
profiles could be identified across groups using this new scale. It was also hypothesized that
the SAID would be significantly better at identifying profiles of attention and activity across
Method
184
Participants
Two hundred and fifteen consent forms were returned by families of children
children were on a split placement (spending part of their school week in a mainstream
school and part of their time in a special school; n = 12) or were located in a support centre
for children with intellectual disabilities on a mainstream school site (n = 7). Children were
eligible to participate in the study if: (i) they were aged between 5 and 13 years; and (ii) their
most recent cognitive assessment placed their functioning in the intellectually disabled range
(i.e., their cognitive and/or adaptive living skills assessment total score was less than 70).
Children with a diagnosis of ASD were only included in the sample if they scored above the
recommended cutoff for autism (i.e., 15 or more) on the lifetime version of the Social
Communication Questionnaire (Rutter, Bailey, et al., 2003). A total of 181 students were
Four Factor Index (Hollingshead, 1975). This measure has been found to yield comparable
information to more recently developed SES measures (Cirino, et al., 2002) but has the
advantages of being simple to complete and less time-consuming. Scores are averaged across
ratings for both parents and an overall score is calculated. A higher score indicates a higher
Measures
Wechsler, 2003). The WPPSI-III and WISC-IV are established, reliable and valid measures
of intellectual ability with good to excellent internal consistency (α = .85 – .95) and strong
185
test-retest reliability (r = .80 – .95). They were used in this study to determine each child’s
(VABS-II-T; Sparrow, et al., 2005). The VABS-II-T is a reliable and valid measure of
adaptive behaviour with acceptable to excellent internal consistency (α = .74 – .98) and
moderate to very strong test-retest reliability (r = .43 – .97). It was used in this study to
determine the current adaptive functioning of children who were unable to complete the
WPPSI-III or WISC-IV.
al., 2003). The SCQ, previously known as the Autism Screening Questionnaire (ASQ;
that examines the areas of communication, socialization, and restricted and repetitive
behaviour and interests. The SCQ was completed by families of children with a diagnosis of
Conners Rating Scales – Third edition, Teacher Short form (Conners 3; Conners,
2008). The Conners 3 has 39 items and screens for symptoms of ADHD and related
problems/executive functioning, aggression and peer relations. It was developed for use with
typically developing children and was not developed for use with children who have ID
(Conners, 2008). The Conners 3 was completed by each child’s current teacher. It was used
to examine its ability to detect differences in ADHD symptoms across groups compared with
et al., 2013a; Freeman, Gray, Taffe, & Cornish, 2013b). This newly developed rating scale
186
verbal communication and following instructions. These items were developed with specific
consideration for behaviours that would be observed in children with ID. The items were
professionals, and a review of existing rating scales. Teachers respond to each statement on a
3-point scale of never/rarely, sometimes and often. All items are worded positively as it has
been proposed that this may help to improve response rates of parents and teachers when
reporting on children's behaviours (Goodman, 1997). Lower scores on the T-SAID relate to
greater difficulties. The subscales have good to excellent internal consistency (α = .79 – .94)
and strong test-test reliability over 30 days (ICC = .86 – .96; Freeman, et al., 2013a, 2013b).
Strong convergent validity with corresponding subscales on the Conners Rating Scales –
Third edition, Teacher Short form (r = .66 – .69) and the Developmental Behaviour Checklist
(r = .67) have also been reported (Freeman, et al., 2013a). The T-SAID was completed by
Procedure
Ethics approval was obtained from the Monash University Standing Committee on
Ethics in Research Involving Humans, the Victorian Department of Education and Early
Participants were selected through a three-stage process. In the first stage, children
were recruited from several sources. School principals were invited to assist with recruitment
for the study. Families at consenting schools were sent home an envelope containing a poster,
explanatory statement and consent form. Families who consented to participate returned the
consent form in a reply-paid envelope. Support groups and community organisations were
also approached to assist with recruitment and they advertised the study on their web site.
Interested families contacted the research team directly by phone or email, and information
187
In the second stage, a member of the research team telephoned each consenting family
information was obtained, as well as clinical information including their child’s primary
diagnostic status, comorbid diagnoses, and any medication they were currently prescribed.
If their child had received a cognitive and/or adaptive behaviour assessment in the
past they were asked to provide these results to the research team. A cognitive assessment
was conducted if the child had not been administered one in the last 18 months (WPPSI-III)
or 2 years (WISC-IV). If a child was deemed untestable using the WPPSI-III or WISC-IV,
then the VABS-II total Adaptive Behaviour Composite score (ABC) was used to determine
In the third stage, the classroom teacher was mailed a booklet of rating scales. It was a
requirement that each teacher who completed them had known the child for a minimum of 6
months. They were asked to complete a number of rating scales including the Conners 3
(Conners, 2008) and the T-SAID (Freeman, et al., 2013a, 2013b). Questionnaires were
returned to the research team in a reply-paid envelope. Reminder letters or emails were sent
to teachers if questionnaires had not been returned within four weeks, and a second reminder
was sent if they had not been returned within six weeks.
Parents of children with ASD were asked to complete the lifetime version of the SCQ
(Rutter, Bailey, et al., 2003). This questionnaire was mailed to families to complete in their
Analysis
The grouping for level of ID was determined by using the child’s FSIQ from the
WPPSI-III or WISC-IV, or the ABC from the VABS-II for children who were untestable on
the cognitive assessment. Severity of ID was defined using the criteria in Sattler (2001): mild
188
ID (55 – 70), moderate ID (40 – 54), and severe/profound (< 40). Eight children for whom
severity of ID could not be determined were excluded from the regression analyses.
Scores on the T-SAID were reversed for analysis so that higher scores were indicative
of greater difficulties. The total score was calculated by taking the mean of all the items
(known as the Mean Item Score, or MIS). This method has a number of advantages over
calculating the sum of all item scores (Taffe, et al., 2008). One advantage is that the MIS may
of Items Checked, or PIC) and the intensity at which the items are checked for that person
(the Intensity Index, or II). PIC is the proportion of recoded items receiving codes of 1 or 2,
indicating that the corresponding items indicated problematic behaviours. The II is the
regression analysis including gender, chronological age, SES, level of ID and diagnostic
group. For level of ID, mild ID was used as the comparison group and for diagnostic group,
Results
76 classroom teachers returned the rating scale booklet yielding a return rate of 96.2%. Of the
61 students with ASD, rating scales were returned for 59 students (96.7%). Rating scales
were returned for all 41 students in the DS group. This yielded a total sample of 176 students
(114 males, 62 females) with a mean age of 9.15 years. The demographic characteristics of
the sample are described in Table 1. There were no significant differences in age (p = .71) or
SES (p = .46) across diagnostic groups. There was a higher proportion of males in the ASD
group compared with the other two groups (χ2 = 10.91, p < .01). A higher proportion of
189
children in the ASD group were nonverbal compared with the other two groups (χ2 = 24.12, p
< .001).
Across groups, there was no significant difference in gender (p = .82), age (p = .77),
or SES (p = .42) for the students whose teachers returned the rating scales and those who did
not.
Comorbid psychopathology
Across the total sample, 31 parents (17.1%) reported their child as having at least one
comorbid diagnosis. The most common comorbid diagnosis was ADHD, with 20 children
having this diagnosis (12 from the ASD group, 8 from the ID group; 11.4%). Thirteen
children were currently taking medication for ADHD (65.0%), of which nine were taking
methylphenidate, two were taking dexamphetamine, one was taking clonidine, and one was
taking atomoxetine. Three had never been prescribed medication (16.7%), and 3 had taken
medication in the past but were not doing so at the present time (16.7%). Other commonly
reported comorbid diagnoses included epilepsy (n = 17; 9.4%) and anxiety (n = 6; 3.3%).
Cognitive ability
One hundred and twenty-three children (69.9%) were able to complete at least part of
a cognitive assessment. The means, standard deviations and ranges for the assessment broken
down by group are described in Table 2. For those children for whom a Full Scale Score
(FSIQ) could be derived (n = 107), their mean FSIQ was 53.37, placing them in the
moderately intellectually disabled range. Across groups, the children with DS had a
significantly lower FSIQ than the other 2 groups (F2,104 = 19.05, p < .001). For those children
190
administered the WISC-IV (n = 95), the children with DS had significantly lower scores on
all four Indices: Verbal Comprehension (F2,83 = 5.89, p < .01), Perceptual Reasoning (F2,89 =
18.15, p < .001), Working Memory (F2,84 = 6.10, p < .01) and Processing Speed (F2,79 =
12.24, p < .001). In the younger students administered the WPPSI-III (n = 28), there was no
difference across groups for the Performance Scale (p = .12), but children with DS had a
One hundred and nine students had the Vineland Adaptive Behaviour Scales
completed by their teacher. The means, standard deviations and ranges for the assessment
broken down by group are described in Table 2. Their mean Adaptive Behaviour Composite
(ABC) was 54.66 placing them in the moderately intellectually disabled range. Children in
the ID group had a significantly higher ABC than the other two groups (F2,106 = 3.98, p <
.05). There were no significant differences across diagnostic groups on the Communication
Scale (p = .47). Children in the DS group had a significantly lower Daily Living Skills Score
(F2,104 = 4.72, p < .01) than the other two groups. Children in the ASD group had a
significantly lower score on the Socialisation Scale than the other two groups (F2,104 = 8.32, p
< .001). The overall scores for both assessments broken down by diagnosis are described in
Table 2.
Internal consistency
The internal consistency of the T-SAID was examined to determine whether it had
and verbal communication subscales (α = .87 – .95). It had fair internal consistency on the
191
following instructions subscale (α = .74 – .81). Given that these results are similar to the
internal consistency reported for the combined sample (Freeman, et al., 2013b), the T-SAID
disorders.
Regression analyses were conducted to examine the T-SAID total score across
groups, controlling for age, gender, SES, and severity of ID. As shown in Table 4, the
(possible range 0-2) was significantly greater for children with ASD. On average, 11% (p <
.05) more items were marked sometimes or rarely/never for those with ASD than for those
with ID. There were no differences across groups on this subscale for the mean item score
(MIS) or intensity index (II). This suggests that while the children with ASD exhibited a
greater breadth of hyperactive/impulsive behaviours, these were not noticeably more severe
The MIS on the verbal communication subscale was greater by .21 for those with
ASD than for those with mild ID, but only by .09 for those with DS. A similar pattern was
evident in the regressions of the II (on a 0-1 scale), but there were no differences in the PIC.
This suggests that the higher MIS was due to verbal communication skills being noticeably
more limited among children with ASD. There were no differences across groups on the
192
The Conners 3 scores revealed no significant differences across groups for the
hyperactivity or inattention subscales. When examining the proportion of children within the
clinical range for ADHD symptomatology, again there were no differences across diagnostic
Discussion
The findings of this study suggest that children with ASD display a significantly
consistent with the findings of a previous study with adolescents (Bradley & Isaacs, 2006).
These difficulties were independent of gender, age and severity of ID. The findings also
suggest that hyperactive/impulsive symptoms significantly decrease with age in children with
ID, similar to the trend noted in children who are typically developing (Biederman, et al.,
2000; Biederman, et al., 2006). Children with severe/profound ID were also found to have a
which has been discussed previously by the authors (Freeman, et al., 2013a).
The suggestion that children with ASD have a significantly greater breadth of
provides support for the removal of the current exclusionary criteria in the ICD-10 that does
not permit dual diagnoses of ASD and ADHD (World Health Organization, 1992). Further, it
supports the DSM-5 (American Psychiatric Association, 2013) and the Diagnostic Criteria for
Psychiatric Disorders for use with adults with Learning Disabilities/Mental Retardation (DC-
LD; Royal College of Psychiatrists, 2001) which do allow for these comorbid diagnoses to be
made.
193
The case for removing such exclusionary criteria would appear even more convincing
when looking at our sample which included children with other types of ID who had lower
levels of hyperactivity than the ASD group, even though paradoxically no exclusionary
criteria exist that preclude a comorbid diagnosis of ADHD in these groups. With twelve
children in our sample being diagnosed with both ASD and ADHD, clearly some clinicians
have made this dual diagnosis, and two-thirds of these children are taking medication to
manage these symptoms. Given this exclusionary criteria has been removed in the DSM-5
(American Psychiatric Association, 2013), it is hoped that this will give other clinicians
“permission” to make a dual diagnosis if they feel that it is warranted. This may in turn
This study also found that children with ASD had significantly greater difficulties
with behaviours that make up the Verbal Communication subscale than children with DS or
ID, and that the intensity of these behaviours was also significantly greater. This subscale
includes behaviours such as Can verbally repeat back an instruction that has one step and
Asks before joining in a game. This is likely to be a reflection of language ability, given that
children with ASD often have impairments in verbal language skills (Luyster, Seery, Talbott,
& Tager-Flusberg, 2011; Seltzer, Shattuck, Abbeduto, & Greenberg, 2004). While children
with DS are also known to experience language difficulties (Luyster, et al., 2011) , the
findings from the present study would suggest their inattentive and impulsive behaviours as
they manifest in verbal communication may be comparatively stronger than those with ASD.
Further, the intensity of difficulty would naturally be greater in the ASD group given a higher
proportion of these children were non-verbal and would be unable to demonstrate their skills
on these items.
While differences across groups for hyperactivity/impulsivity were found using the T-
SAID (Freeman, Cornish, & Gray, 2012), the Conners 3 (Conners, 2008) did not detect such
194
differences. This finding is not surprising given that the Conners 3 (Conners, 2008)– or
indeed previous versions of the Conners (Conners, 1989, 1997) – was not developed for
children within the intellectually disabled range. Items on existing rating scales describe
behaviours related to hyperactivity, impulsivity and inattention that are not often observed in
children with ID such as Dislikes it when phone is engaged when trying to call someone.
Other items relate to behaviours that have limited relevance such as Puts off
homework/projects to the last minute as such activities are rarely, if ever, asked of children
with ID. The assumption that a child is able to speak or verbalise also compromises the
validity of many rating scales, which often include items such as Talks too much or too fast.
Such items could not be rated in a significant proportion of people with severe and profound
ID who are non-verbal (Deb, et al., 2008). The T-SAID contains items that are more
range, and avoids the use of vague terms such as Excitable, impulsive or Restless, overactive.
The inclusion of clarifiers and examples in the T-SAID further illustrate the behaviours of
interest and aim to minimise the degree of subjectivity when rating each item (Reid & Maag,
1994). Findings of this study emphasise the need for the development and use of measures
developed specifically for children with ID. Use of measures designed for typically
conclusions.
Many studies continue to use instruments such as the Child Behaviour Checklist
(CBCL; Achenbach & Rescorla, 2001) or the Conners (Conners, 1989, 1997, 2008) that have
limited or questionable validity when examining inattention and hyperactivity among the ID
population (Koskentausta, et al., 2004; Turk, 1998), with the shortcomings being reportedly
even more marked when using teacher ratings (Deb, et al., 2008). Therefore, the findings of
this study reinforce the importance and utility of using instruments that are clinically valid for
195
the population of interest. Using tools developed for typically developing children may mask
important differences in symptom presentation and behaviour that exist in children who have
ID.
It should be noted that while the results of this study suggest differences across
collected from one source. Irrespective of whether a rating scale can identify behavioural
history, parent ratings, behavioural observations and results from neuropsychological tests
(e.g., Wilding Monster Card Sorting task; Wilding, Munir, & Cornish, 2001) which would
The findings of the present study suggest that the new rating scale developed by the
authors, the T-SAID (Freeman, et al., 2013a), has the ability to detect differences in ADHD
symptomatology in children with ID. Given the lack of reliable and valid rating scales that
have normative data to measure ADHD symptoms among children within the intellectually
disabled range (Deb, et al., 2008), the T-SAID has the potential to become a valuable tool
that can be used by clinicians and researchers not only to detect difficulties within this
The value of using a teacher rating scale to measure inattention and hyperactivity is
that teachers, unlike parents, have the opportunity to observe large groups of children
engaging in goal-directed tasks. They can draw on behaviours they have observed both in the
present cohort of students being taught and past students, and can use this information to
make inferences about what behaviours deviate from the norm (Gadow, et al., 2006).
Teachers potentially have a wider exposure to children’s behaviour compared with parents
who may only know the behaviours of their own children and may consider unusual or
196
challenging behaviours to be “normal” because they have no basis of comparison (K.
Sullivan, et al., 2006). Children’s behaviour in school can also be markedly different from at
home due to the expectation of following instructions from a teacher and engaging in
prescribed activities where an outcome is expected, unlike at home where some children may
engage in fewer goal-directed activities and/or more free play where such difficulties are less
One of the limitations of this study is that teachers of the children with a diagnosis of
ADHD were not naïve when completing the rating scales. This may have led them to rate the
student differently compared with those teachers whose students had similar difficulties but
had not undergone a professional evaluation. Another limitation is that medication use was
not formally collected or monitored among children with an ADHD diagnosis, and was
dependent upon parent report. For those children who were reported to be on medication, this
study did not control for dosage, length of time child had been on the medication, or whether
it was used continuously or sporadically. Assuming that the medication taken managed the
frequency and intensity of ADHD symptoms (Antshel, et al., 2006), the behaviours of these
children may have been qualitatively different from those in the study with hyperactivity or
inattention who did not take medication to manage these symptoms. A third limitation is that
while the T-SAID subscales were found to have adequate internal consistency across
group. Future studies need to look at the larger samples to confirm the stability of this factor
Overall, the pattern of results reported in this paper supports research suggesting that
attention and activity levels are not homogenous in children with ID. Different trajectories
may exist across neurodevelopmental disorders and across development (Cornish & Wilding,
197
2010; Karmiloff-Smith, 2009). While this study suggests differences in hyperactive and
impulsive behaviours across children with ASD, DS and ID, further longitudinal and cross-
sectional studies are needed to yield more conclusive findings regarding inattention,
hyperactivity, and the differences across known and idiopathic causes of ID. An
understanding of these differences would also be beneficial for teachers and school settings
as it will enable them to develop strategies and implement interventions to improve learning
of students experiencing these difficulties in the classroom, which in turn will enhance long-
term outcomes.
Acknowledgments
The authors would like to acknowledge the Apex Foundation for Research into
Intellectual Disability Ltd. (Victoria, Australia) for funding assistance to conduct this study,
and Ms Kristina Clarke for her assistance with data collection and entry.
198
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Table 1
Sample Demographics
Age
Range 5 – 12 5 – 12 5 – 13
SESa
Range 11 – 69 8 – 69 14 – 69
developmental
208
Split placementb 1 (1.7) 7 (9.2) 3 (7.3)
mainstream school
a
Hollingshead scores range from 8 to 71. bChildren who spend part of their week in a
209
Table 2
Autism ID Down
Syndrome
/WPPSI-III 40 – 70 41 – 70 40 – 49
45 – 75 45 – 75 45 – 63
45 – 84 45 – 86 45 – 59
50 – 77 50 – 88 50 – 65
50 – 91 50 – 94 50 – 68
49 – 75 53 – 77 48 – 59
47 – 79 49 – 81 47 - 53
20 – 70 30 – 74 31 – 63
25 – 74 40 – 74 46 – 72
210
Socialisation 58.68 (11.59)† 67.14 (9.13) 65.26 (7.49)
32 – 83 50 – 89 50 – 84
Skills 21 – 72 30 – 80 36 – 69
Note. WISC-IV = Wechsler Intelligence Scale for Children – Fourth edition; WPPSI-III =
211
Table 3.
Internal Consistency of T-SAID Subscales and Total Score Across Diagnostic Groups
hyperactivity
inattention
verbal comm
follow inst
total
212
Table 4
MIS PIC II
Hyperactivity/impulsivity
Verbal communication
213
Constant 1.60† .92† .83†
Note. MIS = Mean Item Score; PIC = Proportion of Items Checked; II = Intensity Index.
214
CHAPTER 11 GENERAL DISCUSSION
215
Although previous research exists to support the notion that attention difficulties exist
in children with ID, progress in this area has been hampered by issues such as diagnostic
overshadowing (Jopp & Keys, 2001; Mason & Scior, 2004); the belief that attention
difficulties relate to cognitive deficits rather than being a comorbid diagnosis (Antshel, et al.,
2006; Guerin, et al., 2009); and challenges associated with determining mental age thus
for differing developmental trajectories across syndromes (Cornish, Scerif, et al., 2007;
Cornish & Wilding, 2010; Karmiloff-Smith, 2009), research into the development of rating
scales that can screen for and identify difficulties in attention, hyperactivity and impulsivity
has been limited, and often studies have had to resort to use of scales designed for typically
developing children.
With this background in mind, the present study had three aims: (1) to develop a
reliable and valid rating scale that was more sensitive to exploring the range and severity of
ADHD symptoms in school-aged children with intellectual disability; (2) that the new rating
scale would have good convergent validity with existing measures of ADHD; and (3) to
describe and compare the profiles of ADHD symptoms in children with known causes of ID.
The findings of Chapter 8 suggested that the T-SAID is a reliable and valid measure
consistency and strong test-retest reliability. It had strong convergent validity with
corresponding subscales on the Conners Third edition (Conners, 2008) and the
Developmental Behaviour Checklist – Teacher version (Einfeld & Tonge, 1995, 2002)
suggesting that these different scales measured the same construct. It also had moderate
divergent validity with the total score on the Vineland Adaptive Behaviour Scales Second
216
edition - Teacher Rating Form (Sparrow, et al., 2005) suggesting a lack of association
between these measures and that they measured different constructs. Good content validity
was established via the method of item derivation and use of focus group discussions to
develop and evaluate the scale (DeVellis, 2003). Although it was beyond the scope of this
study to evaluate the properties of the T-SAID as a screening tool for ADHD, the T-SAID
demonstrated discriminant validity across children with a diagnosis of ADHD and those who
did not have this diagnosis. Regression analyses suggested that children with severe or
profound ID had greater difficulties with attention, hyperactivity and impulsivity, with a
broader range of behaviours and greater intensity being exhibited. The findings from this
chapter supported the first aim stating that the T-SAID would be a reliable and valid measure
of ADHD symptoms in school-aged children with ID. It supported the second aim stating that
the scores on the T-SAID would have good convergent validity with existing measures of
ADHD. It also supported the first hypothesis, stating that there would be a positive
The findings of Chapter 9 suggested that T-SAID had a four factor solution. As
expected, Hyperactivity/Impulsivity and Inattention were extracted, being the two core
volume and pace of speech, making requests and retaining information. The fourth subscale,
rules. The internal consistency of these subscales was good to excellent. The extraction of
four factors suggested that given children with ID may present with additional complexities,
such as limited or no language or a physical disability, the nature of ADHD symptoms may
present quite differently within this population as compared with typically developing
217
children. The findings from this chapter supported the first aim stating that the T-SAID
would be a reliable and valid measure of ADHD symptoms in school-aged children with ID.
The findings of Chapter 10 suggested that children with autism spectrum disorder
children with idiopathic ID or Down Syndrome. Children with ASD also had significantly
greater difficulties with behaviours that made up the Verbal Communication subscale than
children with Down Syndrome or idiopathic ID, and that the intensity of these behaviours
was also significantly greater. In the sample used in this study, the T-SAID was able to detect
(Conners, 2008) was unable to do so. These findings supported the third aim stating that the
children with ID. The findings from this chapter supported the third hypothesis. Higher levels
of hyperactivity/impulsivity were reported in the ASD group. The findings from this chapter
did not support the second hypothesis. While the Down Syndrome group had lower levels of
The aim of the focus group discussions conducted in Phase 1 this study was twofold:
a) to collect a list of behaviours from teachers and health professionals exhibited by children
with attention difficulties and ID; and b) to obtain comments and feedback regarding the
development of a new rating scale. The majority of themes generated from these discussions
were consistent with those identified in previous observational studies, research and
diagnostic manuals regarding attention difficulties within this population. However, some of
the issues were specifically related to different professions which highlighted the value of
218
Teachers identified and discussed more externalising behaviours i.e., hyperactivity
and impulsivity, and fewer behaviours relating to inattention. This is consistent with research
which suggests that ADHD – predominantly inattentive subtype is underdiagnosed, and that
teachers are less likely than parents to report and/or identify inattentive behaviours consistent
with ADHD (Murray, et al., 2007). This could be due to a number of reasons. In a busy
classroom, it is likely that externalising behaviours will take up more of a classroom teacher’s
time and attention in trying to manage and/or minimise the impact these behaviours have on
other students and their teaching. Children who are displaying inattentive behaviours such as
staring off into space or taking a considerable amount of time to complete their work may be
less likely to draw the attention of their teacher, or depending on the composition of students
in the classroom may even escape their notice for long periods of time. Alternatively,
teachers may observe these problem behaviours but perceive them as less severe as they are
less disruptive to the learning of other students or the flow of the classroom in general. This
highlights the importance of making teachers more aware of the problem of inattention in the
classroom – both through improved identification and greater understanding of the impact it
has on students. Even though these behaviours may not be as readily observable or disruptive
to others compared with externalising behaviours, they can still have a significant impact on
Even experienced teachers within the focus groups sometimes had difficulty
distinguishing behaviours that were specific to children with ID who had attention difficulties
and those that were characteristic of children with ID generally. This raises the issue of the
importance of educating teachers about children with ID who display ADHD symptoms so
that they can become better at identifying them (irrespective of whether diagnosis is
warranted) and tailoring their teaching to meet the needs of these students.
219
Issues of medication were also discussed briefly by both groups of teachers and one
group of health professionals. These issues reflected the same challenges faced by families of
typically developing children and adolescents with ADHD: parental concerns regarding
giving their child medication; compliance issues with children; and the impact of side-effects
(e.g., a child having to miss half of lunch time because the medication suppresses their
appetite and therefore it takes them a long time to eat their lunch). The fact that medication
was discussed illustrates that some children within their schools have received a diagnosis of
ADHD and are being treated for it. This is encouraging to note, given comorbid
One of the main strengths of this study was the rigour with which the rating scale was
developed, using the framework described by DeVellis (2003). Drawing upon behavioural
data from past research, a review of existing rating scales, an examination of diagnostic
manuals developed for individuals with ID and those who are typically developing, and
consultation with teachers and health professionals ensured that the T-SAID contains items
that are valid indicators of difficulties with attention, impulsivity and hyperactivity within
this population.
At the individual item level, the T-SAID describes behaviours that provide richer
information than vague, non-specific items such as Restless or Overactive which do little to
describe specific difficulties to a health professional who may not have the opportunity to
conduct observations of the child across settings. This information could then contribute to
the formulation of behaviour management plans, strategies and interventions that address
220
11.3.2 Sample
Another strength of this study was in the breadth of the community sample. The
socioeconomic status of families ranged from very low (e.g., single parent families with the
parent being a full-time carer to one or more children with a disability) to high (e.g., dual
income families with both parents in professional jobs). Families also came from a range of
cultural backgrounds, with approximately one quarter identifying as being an ethnicity other
than Australian. Recruitment would have been dependent, however, upon families being able
to read the plain language statement sent home with their child. Families with English as a
first language would therefore be more likely to respond to requests for research
participation. Resources precluded the plain language statements being translated into other
languages, but this may be one strategy that could be used in future research to ensure the
A third strength of the study is in the value of developing a teacher rating scale to
measure attention difficulties. Teachers, unlike parents, have the opportunity to observe large
groups of children working in the classroom. They can draw on behaviours they have
observed both in the present cohort of students being taught and past students, and can use
this information to make inferences about what behaviours deviate from the norm (Gadow, et
al., 2006). Teachers are also exposed to the behaviour of their students for long periods of
time (i.e., all day, 5 days a week) encompassing cognitively demanding tasks such as
outcome is expected, and activities encompassing creativity and play. This may contrast with
the home environment of some children who engage in less goal-directed activities or free
play where there may be fewer opportunities to observe such difficulties (Murray, et al.,
2007).
221
11.4 Limitations of the present study
One of the limitations of the present study was in the use of focus groups to facilitate
the identification of behaviours and to obtain their feedback on the new rating scale.
Although it has been recognised that focus groups can encourage an exploration of issues that
may not be presented in a one-on-one interview format (Vogt, King, & King, 2004),
participation in the discussions was uneven at times. The facilitator monitored participation
of the group members and elicited comments from those teachers and health professionals
who had made a lesser contribution to the discussion, but it is possible that the issues
presented and discussed were a product of the more articulate or dominant group members to
The possibility of selection biases in the composition of the focus group participants
is another potential limitation of this study. Teachers or health professionals who believed
that attention difficulties are present in all children with ID may have been less likely to
participate in a focus group discussion. Those who have had limited contact with such
children may have felt that they had little to offer to a discussion about these issues. The
transcript analysis revealed that the behaviours identified and opinions expressed regarding
the rating scale items were quite heterogeneous, however, and thus the extent of selection
While there are no straightforward tests for ensuring that qualitative research is
reliable and valid, guidelines exist (Pyett, 2003) and every effort was made to adhere to these
in conducting the focus groups and analysing the data. The focus group participants
comprised teachers, psychologists and paediatricians. The diversity of the experience which
these participants brought to the focus groups, and their knowledge of students with ID who
experience attention difficulties, was important for a number of reasons. The diversity of
222
professions ensured that interviewer bias did not occur which may have precluded the
ensured that behaviours typically observed in the classroom were reported, enhancing the
face validity of the T-SAID for the population for whom the scale was being designed. The
recruitment of psychologists and paediatricians ensured that the items had diagnostic
relevance and also enabled the collection of data on behaviours that may be highly relevant
11.4.2 Respondents
Even though the present study has reported some preliminary findings suggesting
noted that a rating scale alone is insufficient to draw conclusions about these difficulties, and
observations and results from neuropsychological tests (e.g., Wilding Monster Card Sorting
task; Wilding, et al., 2001) in line with diagnostic guidelines (Barkley, 2006c). Future
research using the T-SAID may benefit from collecting multiple sources of data to draw
firmer conclusions about profiles and developmental trajectories of attention and activity.
complete several rating scales that measured ADHD symptoms, it would have been useful to
compare additional methods of assessing attention profiles with the SAID to confirm whether
Further consideration must also be given to the validity of the T-SAID for children
with severe/profound ID who may have scored on some of the items due to their degree of
disability rather than presence of ADHD symptoms. This was addressed somewhat in the
223
factor structure presented as the items which inferred a need for verbal ability clustered
together onto the Verbal Communication factor. This recognised that verbal skills cannot be
assumed among children with ID, as children with certain neurodevelopmental disorders
alternative could be to consider separate factor structures for children who are verbal or
nonverbal, similar to the approach taken by Burbidge and colleagues (2010) for children with
For those children with a diagnosis of ADHD who were taking medication,
information on their dosage and compliance was not formally collected or monitored, and
was dependent upon parent report. The study was also unable to control for medication type
or length of time child had been on the medication. Medication may have modulated the
frequency and intensity of behaviours observed and reported by teachers, but given the aim of
this study was not to examine the effect of medication, this would not have impacted on the
psychometric properties reported in Papers 1 and 2. It is worth noting, however, that only 20
children had a diagnosis of ADHD and two thirds of these were currently taking medication.
Interactions between medication and observed behaviour may have potentially reduced the
rates of symptomatology in the groups compared in Paper 3, but given these children
represented such a small proportion of the groups or total sample they are likely to have had
The present study was unable to verify the accuracy of diagnosis for some children at
the time of recruitment to the study e.g., children recruited who were identified by their
parents as having idiopathic ID but may have had ASD. Resources precluded the use of a
gold standard screening instrument such as the Autism Diagnostic Observation Schedule
224
(ADOS; Lord, Rutter, DiLavore, & Risi, 1999) which may have identified some of these
children as having ASD. Further, the screening instrument that was administered in the
present study (i.e., the Social Communication Questionnaire; Rutter, Bailey, et al., 2003) was
only administered to families of children with ASD, rather than being given to all families.
However, given the high rate of awareness of autism and autism symptoms, it is likely that
the rates of such undiagnosed cases of ASD were very low. Given that diagnostic accuracy
was not one of the aims of this study, this limitation would not have impacted on the analyses
The most important direction for future research is the evaluation of the SAID using
other informants, such as parents. While inter-rater reliability of parents and teachers when
rating behaviour problems is noted across the literature as a significant challenge (Lavigne,
Dulcan, LeBailly, & Binns, 2012; Wolraich, et al., 2004), the use of rating scale data from
multiple informants is considered best practice when screening for ADHD symptoms
hyperactivity and impulsivity in preschool-aged children is also needed. Research from the
field of neuropsychology has described attention difficulties in toddlers and young children
with neurodevelopmental disorders such as Williams Syndrome (Cornish, Scerif, et al., 2007;
Scerif, et al., 2004) and Down Syndrome (J. H. Brown, et al., 2003). It is therefore clear that
a reliable and valid, disability specific rating scale would be a useful and necessary tool for
research into this population. Early identification and intervention may help minimise the
225
11.5.2 Independent validation of the psychometric properties
Future research is needed to examine the psychometric properties of the T-SAID and
to confirm or modify the factor structure identified in the present study, particularly given the
modest sample size of this study. Independent studies are also needed to give further support
to the reliability and validity of the scale. Given the clinical importance of obtaining
when making diagnostic decisions (Barkley, 2006c), further development and examination of
Preliminary results suggest that the T-SAID may have the ability to discriminate
between children who have ADHD and those who do not, although its efficacy as a screening
tool is yet to be evaluated. It should be noted, however, that in this study the ADHD
diagnosis was determined via parent report only. An urgent area for future research is
therefore to examine the validity of the T-SAID in a larger sample of children with a
confirmed clinical diagnosis of ADHD. As the majority of clinicians use rating scales when
considering this diagnosis (Chan, et al., 2005), further evidence supporting the efficacy of the
T-SAID would make it a useful screening tool for clinicians when working with children who
have ID.
Another direction for future research would be to examine the robustness of the T-
SAID to identify attention and activity profiles across a wider range of neurodevelopmental
disorders. Evidence suggests that different profiles and developmental trajectories may also
exist across other syndromes including Klinefelter (Lo-Castro, D'Agati, & Curatolo, 2011)
and DiGeorge Syndromes (Lo-Castro, et al., 2011). Understanding the differences (and
treatment, medication and intervention plans for these children. They could also be beneficial
226
to teachers of these children in their development of individual learning and behaviour
disorders would provide further evidence for the utility of this scale which has been
The findings of our study suggest that the Scale of Attention in Intellectual Disability
– Teacher version (T-SAID) is a reliable and valid measure for children aged 5 to 13 years
with mild to profound ID. Further research is needed to ascertain its reliability and validity in
older children/adolescents and its use among children who are nonverbal. Factor analysis
diagnoses suggests that the T-SAID may have the capacity to tease out differences across
combining this information with other sources such as behavioural observations, interviews
assist with screening for ADHD. The T-SAID could also be used in school settings by
management plans that can target specific areas of difficulty in any of these areas. The
intended outcome of its use in any of these settings is to improve the functioning and learning
outcomes of children experiencing these difficulties, which will in turn enhance their long-
227
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277
APPENDIX A: Focus group discussion outline
Think about students you have worked with, both currently and in the past, who have had
difficulties with hyperactivity, impulsivity, and paying attention in the classroom. What sort
of behaviours come to mind? What behaviours stand out that make them different from other
students with an intellectual disability?
Allow small groups to brainstorm their ideas and write them out on sheets of butcher’s paper.
Come back as a large group with a spokesperson from each group sharing their ideas. One of
the moderators guides the discussion while the other one lists the behaviours named on the
whiteboard. What are the similarities between groups? Differences?
We are developing the attached rating scale as part of our study. We have called it the Scale
of Attention in Intellectual Disability, or SAID. We would like you to read the items that
make up this scale and consider the following questions.
2. Are there any behaviours that we have omitted that you think should be included as an
item in this rating scale?
3. Given that this scale has been developed to be completed by teachers, do you think that
they will be able to complete this rating scale?
Please feel free to write on the rating scale or make comments on a separate piece of paper.
Any feedback you can give will be helpful.
A1
APPENDIX B: The Scale of Attention in Intellectual Disability
Some students with developmental disabilities have problems with their attention, impulsivity, and
hyperactivity. These issues can interfere with learning.
By completing this checklist, you will help us learn more about these problems. This will assist us to
know how the student might respond to help.
Please rate each item based on your general impression of this student over the past month, and
whether the student exhibits this behaviour independently, without assistance from a teacher or
teacher’s aide. Please circle the 2 if you have observed the behaviour often in this student. Circle 1 if you
have sometimes observed the behaviour. If you have never or rarely observed the behaviour in this
student circle the 0.
If the student is unable to perform an item, circle the 0. For example, if the student is unable to talk,
then for the item “Speaks at a reasonable pace” circle the 0.
9. 0 1 2 Can understand and carry out a simple, two-part instruction (e.g., Take off your shoes and sit
on the floor).
10. 0 1 2 Can verbally repeat back an instruction that has one step and does not require instruction
repeated (e.g., Get your hat).
11. 0 1 2 Can verbally repeat back an instruction that has two steps and does not require instruction
repeated (e.g., Get your bag and sit down).
12. 0 1 2 Completes one activity or task before moving on to another (avoids moving between tasks
without completing any of them).
13. 0 1 2 Completes work with reasonable accuracy if work given is within his/her ability.
14. 0 1 2 Keeps hands still while participating in a short classroom task or listening to a story (does not
excessively fidget, tap, fiddle or pick).
B1
0 = never or rarely 1 = sometimes 2 = often
Underline any behaviour you are particularly concerned about
15. 0 1 2 Keeps hands to self when working in a group activity (does not poke or touch others).
16. 0 1 2 Keeps legs and feet still while participating in a short classroom task or listening to a story (does
not excessively swing legs or rock on chair).
17. 0 1 2 Keeps legs and feet to self when working in a group activity (does not kick others).
18. 0 1 2 Keeps track of personal possessions (e.g., coat, lunch box, pencil case).
23. 0 1 2 Remains calm (avoids getting agitated) when changing from one activity or place to another.
24. 0 1 2 Returns attention to task after being distracted by another student.
25. 0 1 2 Shows responsibility for own safety when indoors (e.g., avoids jumping off furniture).
26. 0 1 2 Shows responsibility for own safety when outdoors (e.g., avoids climbing trees or walls when
they might not be able to get down again).
28. 0 1 2 Speaks at a reasonable pace (can be understood, words do not run together).
29. 0 1 2 Speaks at a reasonable volume (not too loud or so soft that cannot be heard).
30. 0 1 2 Stays in own seat when expected to.
33. 0 1 2 Stays within school grounds during the day (avoids climbing the fence, running out the school
gate, or attempting to leave the grounds).
34. 0 1 2 Takes his/her turn when doing group work in the classroom.
37. 0 1 2 Waits for his/her turn to talk during a conversation (avoids interrupting).
38. 0 1 2 Waits patiently in a line (e.g., when queuing for the toilet, when waiting to get on the bus).
41. 0 1 2 Walks rather than runs from room to room when indoors.
42. 0 1 2 When given one simple instruction, can understand it and carry it out (e.g., Get your bag).
43. 0 1 2 When participating in a class activity, does not get easily distracted (e.g., outside noises,
sudden noises).
44. 0 1 2 Works quietly during specific class activities (avoids humming, singing, talking to self or other
throat noises).
B2
APPENDIX C: Letter to principals explaining study
Dear Principal,
We are supervising a student research project on attention and activity profiles of children with
different developmental disabilities. The student researcher is Nerelie Freeman who is currently
undertaking a Doctor of Philosophy (Ph.D) degree. We are hoping to gain a better understanding of
the attention strengths and weaknesses of children with an intellectual disability, autism, Down
Syndrome, Fragile X Syndrome and Williams Syndrome. There are currently no measures to assist
with assessing the attention difficulties of children with an intellectual disability. The development of
parent and teacher questionnaires will assist in evaluating the attention difficulties that some children
may experience.
We wish to involve children from your school. Participation in the study comprises first seeking
permission from yourself. If you give permission, the student researcher will then send information in
the mail advertising the study in the form of posters and a brief notice you might include in your
school newsletter. Consent forms and explanatory statements will also be provided.
Children with parental consent will be administered a cognitive (IQ) assessment. If they have already
had this assessment in the last two years, another one will not be conducted and the previous
assessment scores will be used. If a child is given an assessment, the family will be provided with a
report on the results. The results from this assessment could be used for the child’s next Program for
Students with Disabilities (PSD) review if it is coming up in the next two years. We hope that you
will allow us to assess these children during school hours. We will provide all letters and materials
needed for the study.
The assessment will take approximately 60-75 minutes. The student researcher or a research assistant
will administer the assessment tasks. The student researcher is a registered psychologist and has had 5
years’ experience working as a school psychologist, so she is experienced in administering and
interpreting assessments.
If the assessment(s) indicate that the child is eligible to participate, their classroom teacher will be
asked to fill out questionnaires which ask about the child’s behaviour, attentional difficulties and their
daily living skills. This will take approximately 75 minutes and will be completed individually in the
teacher’s own time, or they can be completed with the student researcher on request.
The Vineland Adaptive Behaviour Skills – Second edition, Teacher Rating Form (VABS-II) is a
general assessment of adaptive behaviour examining the child’s socialisation, communication and
daily living skills. If the child has had a VABS completed in the last 2 years, the teacher will not be
required to fill this out and the previous assessment scores will be used.
The Scale of Attention in Intellectual Disability – Teacher Form is a rating scale developed by the
research team for this study. It comprises 46 items relating to inattention, hyperactivity, impulsivity
and working memory.
The Conners Rating Scales – Third edition is a rating scale comprising 39 items which measures
ADHD symptoms, conduct disorder and oppositional defiant disorder.
The Developmental Behaviour Checklist – Teacher is a questionnaire comprising 96 items which
measures behavioural and emotional problems in children with a developmental delay.
C1
A copy of the rating scales listed above can be sent to you on request.
All information provided by the student and teacher, and the scores obtained in the study, will be
strictly confidential. Participating families may withdraw within 8 weeks of participating in the
assessment phase of the study. We will not be analysing individual responses, rather the group as a
whole. When the study is complete, a report will be made available to you. We wish to point out that
this project has received ethics clearance from the Human Research Committee of Monash University
and the Department of Education and Early Childhood Development (see attached approval letters).
If you have any queries whatsoever regarding this project, please feel free to contact Ms Nerelie
Freeman or Dr Kylie Gray on 9594-1301 or by email at The student
researcher will follow up this letter with a phone call in a couple of weeks, and would be happy to
come to your school if you would like to discuss this project in more detail.
Yours sincerely,
C2
APPENDIX D: Parent/Guardian Consent Form
Title: Attention and activity profiles in children with different developmental disabilities
Conducted by: Dr Kylie Gray, Professor Kim Cornish, and Nerelie Freeman
I Print name
Address
of
Contact number
has been asked to participate in the research project entitled ‘Attention and activity profiles in children
with different developmental disabilities’ being conducted by Dr Kylie Gray, Professor Kim Cornish,
and Nerelie Freeman and involving myself, my child’s classroom teacher, and my child:
I give voluntary consent for my son/daughter for whom I am the guardian to participate in the above
Monash University project. I have had the project explained to me, and I have read the Explanatory
Statement, which I will keep for my records. I understand that the research study will be carried out
in a manner conforming with the principles set out by the National Statement on Ethical Conduct in
Research Involving Humans, and further that:
1. I understand the general purposes, methods, demands and benefits and possible risks,
inconveniences and discomforts of the study as outlined in the 'Parent/Guardian Information
Sheet' that has been given to me.
2. Although I understand that the purpose of this research project is to improve the quality of care,
it has also been explained that my involvement may not be of any direct personal benefit to me
or my son/daughter/person for whom I am the guardian.
3. My participation in the research study is voluntary, and I am free to withdraw at any time, and to
continue receiving appropriate treatment for my son/daughter/person for whom I am the
guardian, as will be the case if I do not volunteer to enter the study.
4. I have been given the opportunity to ask questions in relation to the research study, and I have
received all the information and explanations I have requested.
5. I understand that any information I provide is confidential, and that no information that could
lead to the identification of any individual will be disclosed in any reports on the project, or to
any other party.
D1
APPENDIX E: Parent/Guardian Explanatory Statement
Title: Attention and activity profiles in children with different developmental disabilities
My name is Nerelie Freeman and I am conducting a research project with Professor Kim Cornish,
Head of Discipline, and Dr Kylie Gray, Senior Lecturer, in the Department of Psychology and
Psychiatry towards a PhD at Monash University. This means that I will be writing a thesis which is
the equivalent of a 300 page book.
I am looking for male and female students aged between 5 and 12 years who are attending school and
have a diagnosis of: an intellectual disability, autism spectrum disorder (not Asperger Syndrome or
high-functioning autism), Fragile X Syndrome, Down Syndrome or Williams Syndrome.
Possible benefits
There are currently no well-validated measures to assist with assessing the attention and activity
profiles of children with an intellectual disability. The development of a teacher questionnaire will
assist in evaluating the attention strengths and difficulties that some children may experience. The
findings of this research will assist educators and health professionals in their understanding of the
attention profiles of children with an intellectual disability, and this may enable them to tailor learning
programs, treatments and interventions that are more specific to the needs of these children.
If your child has autism, you will be asked to fill out a questionnaire which asks about your child’s
communication and socialisation skills. This will take approximately 10 minutes. If your child has
another diagnosis, you will not be required to fill out any questionnaires. Your child’s classroom
teacher will also be asked to fill out questionnaires which ask about your child’s behaviour,
attentional difficulties and their daily living skills. This will take approximately 45 minutes.
If any specific difficulties or problems are identified, a referral to appropriate services will be
arranged. If you express any concerns or need any help, this will also be arranged.
If you agree to be a part of this project, please complete the attached consent form. A member of our
research team will then contact you about the project. You can return the form to us in the reply paid
envelope which is attached to the form. No stamp is necessary.
E1
Inconvenience/discomfort
There is no risk of physical or psychological harm in the study. If any specific difficulties or problems
are identified, a referral to appropriate services will be arranged. If you have any concerns, questions,
or need any help please feel free to directly contact Ms Nerelie Freeman or Dr Kylie Gray (contact
details below).
Voluntary participation
Being in this study is voluntary and you are under no obligation to consent to participation. However,
if you do consent to participate, you may only withdraw within 8 weeks of participating in the
assessment phase of the study. Whether you take part or not, it will not make any difference to the
funding or services which your child or your family currently receives.
Confidentiality
Data on computers is securely stored and deidentified (names are not used). Only the research team
will have access to the data. There will be nothing in any reports of the study that could identify
individual children or families. Reports on the study will be submitted for publication, but individual
participants will not be identifiable in such reports. Participation in this project is voluntary. You are
free to withdraw from the project within 8 weeks of participating in the assessment phase of the study.
Storage of data
Storage of the data collected will adhere to the University regulations and kept on University premises
in a locked cupboard/filing cabinet for 5 years. Only the research team will have access to the data. A
report of the study may be submitted for publication, but individual participants will not be
identifiable in such a report.
Results
If you would like to be informed of the aggregate research finding, please contact Dr Kylie Gray (see
details below). The findings will be available from December 2012.
If you would like to contact the researchers If you have a complaint concerning the manner
about any aspect of this study, please contact: in which this research is being conducted, please
contact:
Thank you for taking the time to assist us with our research project.
E2
APPENDIX F: Item-Total Correlations Table for T-SAID Items
Item Item-Total
number correlation
1 .59
2 .63
3 .65
4 .65
5 .68
6 .72
7 .70
8 .68
9 .72
10 .62
11 .74
12 .70
13 .70
14 .63
15 .78
16 .76
17 .66
18 .72
19 .75
20 .71
21 .70
22 .69
F1
23 .65
24 .61
25 .66
26 .74
27 .78
28 .75
29 .77
30 .77
31 .72
32 .69
33 .72
34 .73
35 .76
36 .68
37 .48
38 .45
39 .16
40 .51
41 56
42 .67
43 .67
44 .71
45 .69
46 .65
F2
APPENDIX G: Inter-Item Correlations Table for T-SAID Items
Item
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28
number
1 – .47 .32 .53 .47 .47 .41 .43 .51 .52 .50 .39 .49 .40 .46 .29 .30 .37 .41 .47 .44 .40 .36 .40 .52 .49 .47 .40
2 .47 – .69 .41 .42 .46 .38 .38 .46 .35 .45 .42 .46 .37 .44 .59 .45 .43 .43 .47 .33 .37 .39 .34 .43 .53 .50 .48
3 .32 .69 – .41 .44 .44 .44 .40 .40 .42 .41 .40 .41 .38 .50 .71 .42 .48 .41 .44 .35 .37 .37 .38 .39 .48 .51 .50
4 .53 .41 .41 – .64 .54 .47 .50 .44 .54 .51 .38 .53 .40 .49 .42 .37 .44 .50 .39 .45 .45 .37 .39 .63 .53 .57 .50
5 .47 .42 .44 .64 – .59 .47 .42 .41 .48 .49 .39 .55 .36 .49 .48 .46 .47 .49 .48 .38 .48 .41 .30 .52 .52 .57 .48
6 .47 .46 .44 .54 .59 – .63 .66 .60 .44 .58 .46 .54 .49 .54 .49 .50 .58 .56 .45 .55 .45 .42 .43 .52 .56 .61 .43
7 .41 .38 .44 .47 .47 .63 – .77 .63 .50 .61 .49 .55 .55 .56 .51 .42 .50 .64 .47 .59 .45 .39 .54 .48 .54 .60 .49
8 .43 .38 .40 .50 .42 .66 .77 – .67 .50 .60 .55 .60 .56 .55 .46 .40 .50 .63 .48 .58 .48 .43 .43 .46 .56 .55 .47
9 .51 .46 .40 .44 .41 .60 .63 .67 – .54 .59 .59 .66 .51 .59 .48 .48 .54 .66 .55 .59 .45 .43 .50 .45 .56 .57 .49
10 .52 .35 .42 .54 .48 .44 .50 .50 .54 – .46 .40 .73 .39 .42 .45 .38 .38 .46 .40 .47 .39 .37 .38 .51 .47 .52 .47
11 .50 .45 .41 .51 .49 .58 .61 .60 .59 .46 – .72 .53 .52 .67 .50 .52 .63 .70 .64 .66 .59 .58 .55 .53 .53 .56 .50
12 .39 .42 .40 .38 .39 .46 .49 .55 .59 .40 .72 – .51 .46 .64 .49 .47 .58 .67 .53 .60 .62 .60 .54 .48 .54 .51 .55
G1
13 .49 .46 .41 .53 .55 .54 .55 .60 .66 .73 .53 .51 – .48 .51 .45 .48 .42 .55 .46 .52 .45 .45 .37 .53 .52 .62 .47
14 .40 .37 .38 .40 .36 .49 .55 .56 .51 .39 .52 .46 .48 – .62 .51 .34 .43 .53 .43 .50 .32 .36 .42 .48 .49 .55 .42
15 .46 .44 .50 .49 .49 .54 .56 .55 .59 .42 .67 .64 .51 .62 – .65 .51 .64 .67 .61 .64 .63 .62 .50 .49 .52 .60 .54
16 .29 .59 .71 .42 .48 .49 .51 .46 .48 .45 .50 .49 .45 .51 .65 – .59 .57 .55 .55 .48 .53 .51 .43 .41 .60 .60 .63
17 .30 .45 .42 .37 .46 .50 .42 .40 .48 .38 .52 .47 .48 .34 .51 .59 – .60 .52 .53 .49 .48 .46 .31 .33 .40 .43 .59
18 .37 .43 .48 .44 .47 .58 .50 .50 .54 .38 .63 .58 .42 .43 .64 .57 .60 – .58 .61 .54 .56 .57 .46 .40 .50 .51 .54
19 .41 .43 .41 .50 .49 .56 .64 .63 .66 .46 .70 .67 .55 .53 .67 .55 .52 .58 – .66 .75 .59 .57 .63 .51 .54 .58 .57
20 .47 .47 .44 .39 .48 .45 .47 .48 .55 .40 .64 .53 .46 .43 .61 .55 .53 .61 .66 – .60 .56 .58 .46 .39 .45 .52 .54
21 .44 .33 .35 .45 .38 .55 .59 .58 .59 .47 .66 .60 .52 .50 .64 .48 .49 .54 .75 .60 – .52 .58 .65 .47 .48 .55 .52
22 .40 .37 .37 .45 .48 .45 .45 .48 .45 .39 .59 .62 .45 .32 .63 .53 .48 .56 .59 .56 .52 – .74 .51 .44 .50 .44 .50
23 .36 .39 .37 .37 .41 .42 .39 .43 .43 .37 .58 .60 .45 .36 .62 .51 .46 .57 .57 .58 .58 .74 – .53 .43 .42 .40 .43
24 .40 .34 .38 .39 .30 .43 .54 .43 .50 .38 .55 .54 .37 .42 .50 .43 .31 .46 .63 .46 .65 .51 .53 – .51 .48 .55 .44
25 .52 .43 .39 .63 .52 .52 .48 .46 .45 .51 .53 .48 .53 .48 .49 .41 .33 .40 .51 .39 .47 .44 .43 .51 – .58 .58 .53
26 .49 .53 .48 .53 .52 .56 .54 .56 .56 .47 .53 .54 .52 .49 .52 .60 .40 .50 .54 .45 .48 .50 .42 .48 .58 – .68 .61
G2
27 .47 .50 .51 .57 .57 .61 .60 .55 .57 .52 .56 .51 .62 .55 .60 .60 .43 .51 .58 .52 .55 .44 .40 .55 .58 .68 – .65
28 .40 .48 .50 .50 .48 .43 .49 .47 .49 .47 .50 .55 .47 .42 .54 .63 .59 .54 .57 .54 .52 .50 .43 .44 .53 .61 .65 –
29 .42 .55 .54 .51 .52 .53 .57 .48 .53 .57 .53 .51 .51 .44 .56 .61 .58 .58 .58 .56 .56 .49 .44 .50 .55 .63 .67 .80
30 .48 .43 .44 .41 .54 .63 .51 .55 .60 .47 .57 .54 .52 .58 .64 .58 .52 .57 .53 .57 .57 .48 .49 .36 .51 .60 .67 .61
31 .46 .41 .40 .37 .54 .57 .45 .52 .55 .40 .51 .48 .54 .52 .57 .53 .52 .57 .50 .56 .49 .45 .47 .33 .43 .53 .63 .55
32 .45 .45 .43 .42 .45 .53 .48 .51 .61 .46 .54 .54 .58 .53 .60 .49 .40 .49 .51 .50 .50 .43 .39 .42 .50 .52 .58 .48
33 .51 .63 .51 .49 .51 .57 .48 .48 .55 .49 .46 .47 .57 .43 .44 .60 .52 .50 .48 .43 .41 .46 .42 .43 .53 .76 .58 .55
34 .50 .58 .52 .49 .52 .48 .45 .43 .56 .46 .48 .48 .53 .40 .48 .61 .48 .51 .48 .51 .43 .48 .37 .43 .50 .72 .58 .61
35 .46 .56 .53 .51 .48 .58 .58 .53 .60 .43 .54 .51 .54 .56 .59 .60 .42 .51 .58 .59 .56 .47 .49 .49 .50 .66 .71 .58
36 .49 .46 .48 .52 .49 .59 .49 .47 .45 .35 .46 .36 .41 .48 .47 .49 .48 .49 .49 .52 .50 .43 .42 .44 .50 .48 .55 .53
37 .29 .20 .33 .25 .40 .40 .29 .28 .37 .28 .30 .27 .31 .33 .36 .32 .26 .39 .26 .37 .28 .35 .32 .32 .28 .31 .37 .29
38 .21 .19 .21 .25 .36 .29 .27 .25 .27 .27 .31 .35 .28 .35 .44 .38 .33 .31 .35 .31 .40 .44 .45 .33 .30 .29 .33 .31
39 .12 -.01 -.02 .18 .18 .10 .11 .14 .06 .14 .11 .18 .19 .06 .10 .07 .11 .07 .10 .11 .13 .25 .16 .17 .10 .08 .15 .10
40 .24 .27 .37 .35 .47 .27 .30 .19 .23 .29 .28 .30 .31 .25 .47 .49 .33 .35 .31 .40 .31 .46 .47 .28 .32 .28 .36 .37
G3
41 .41 .34 .32 .33 .51 .49 .35 .38 .41 .31 .41 .41 .42 .36 .38 .39 .42 .42 .39 .44 .32 .46 .40 .29 .36 .33 .41 .31
42 .32 .41 .51 .44 .54 .49 .40 .41 .39 .38 .49 .44 .43 .42 .54 .62 .53 .52 .45 .47 .37 .51 .49 .30 .40 .42 .43 .47
43 .34 .35 .43 .41 .47 .44 .49 .46 .42 .37 .46 .47 .46 .42 .53 .58 .48 .53 .44 .44 .39 .53 .52 .39 .44 .55 .48 .48
44 .32 .59 .67 .45 .51 .43 .38 .34 .38 .40 .46 .40 .40 .37 .55 .67 .54 .53 .41 .47 .34 .46 .40 .34 .40 .53 .53 .63
45 .30 .53 .64 .44 .46 .39 .40 .37 .36 .40 .46 .37 .39 .42 .56 .66 .52 .51 .41 .46 .36 .49 .38 .34 .39 .47 .52 .62
46 .27 .50 .57 .35 .47 .37 .39 .30 .34 .39 .42 .39 .34 .31 .51 .62 .51 .47 .42 .46 .42 .46 .41 .33 .35 .42 .51 .62
G4
Item
29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46
number
1 .42 .48 .46 .45 .51 .50 .46 .49 .29 .21 .12 .24 .41 .32 .34 .32 .30 .27
2 .55 .43 .41 .45 .63 .58 .56 .46 .20 .19 -.01 .27 .34 .41 .35 .59 .53 .50
3 .54 .44 .40 .43 .51 .52 .53 .48 .33 .21 -.02 .37 .32 .51 .43 .67 .64 .57
4 .51 .41 .37 .42 .49 .49 .51 .52 .25 .25 .18 .35 .33 .44 .41 .45 .44 .35
5 .52 .54 .54 .45 .51 .52 .48 .49 .40 .36 .18 .47 .51 .54 .47 .51 .46 .47
6 .53 .63 .57 .53 .57 .48 .58 .59 .40 .29 .10 .27 .49 .49 .44 .43 .39 .37
7 .57 .51 .45 .48 .48 .45 .58 .49 .29 .27 .11 .30 .35 .40 .49 .38 .40 .39
8 .48 .55 .52 .51 .48 .43 .53 .47 .28 .25 .14 .19 .38 .41 .46 .34 .37 .30
9 .53 .60 .55 .61 .55 .56 .60 .45 .37 .27 .06 .23 .41 .39 .42 .38 .36 .34
10 .57 .47 .40 .46 .49 .46 .43 .35 .28 .27 .14 .29 .31 .38 .37 .40 .40 .39
11 .53 .57 .51 .54 .46 .48 .54 .46 .30 .31 .12 .28 .41 .49 .46 .46 .46 .42
12 .51 .54 .48 .54 .47 .48 .51 .36 .27 .35 .18 .30 .41 .44 .47 .40 .37 .39
13 .51 .52 .54 .58 .57 .53 .54 .41 .31 .28 .19 .31 .42 .43 .46 .40 .39 .34
G5
14 .44 .58 .52 .53 .43 .40 .56 .48 .33 .35 .06 .25 .36 .42 .42 .37 .42 .31
15 .56 .64 .57 .60 .44 .48 .59 .47 .36 .44 .10 .47 .38 .54 .53 .55 .56 .51
16 .61 .58 .53 .49 .60 .61 .60 .49 .32 .38 .07 .49 .39 .62 .58 .67 .66 .62
17 .58 .52 .52 .40 .52 .48 .42 .48 .26 .33 .11 .33 .42 .53 .48 .54 .52 .51
18 .58 .57 .57 .49 .50 .51 .51 .49 .39 .31 .07 .35 .42 .52 .53 .53 .51 .47
19 .58 .53 .50 .51 .48 .48 .58 .49 .26 .35 .10 .31 .39 .45 .44 .41 .41 .42
20 .56 .57 .56 .50 .43 .51 .59 .52 .37 .31 .11 .40 .44 .47 .44 .47 .46 .46
21 .56 .57 .49 .50 .41 .43 .56 .50 .28 .40 .13 .31 .32 .37 .39 .34 .36 .42
22 .49 .48 .45 .43 .46 .48 .47 .43 .35 .44 .25 .46 .46 .51 .53 .46 .49 .46
23 .44 .49 .47 .39 .42 .37 .49 .42 .32 .45 .16 .47 .40 .49 .52 .40 .38 .41
24 .50 .36 .33 .42 .43 .43 .49 .44 .32 .33 .12 .28 .29 .30 .39 .34 .34 .33
25 .55 .51 .43 .50 .53 .50 .50 .50 .28 .30 .10 .32 .36 .40 .44 .40 .39 .35
26 .63 .60 .53 .52 .76 .72 .66 .48 .31 .29 .08 .28 .33 .42 .55 .53 .47 .42
27 .67 .67 .63 .58 .58 .58 .71 .55 .37 .33 .15 .36 .41 .43 .48 .53 .52 .51
G6
28 .80 .61 .55 .48 .55 .61 .58 .53 .29 .31 .10 .37 .31 .47 .48 .63 .62 .62
29 – .64 .58 .53 .58 .61 .58 .56 .29 .28 .00 .33 .32 .48 .47 .64 .60 .62
30 .64 – .86 .60 .50 .54 .59 .60 .44 .38 .09 .36 .46 .50 .52 .54 .53 .53
31 .58 .86 – .58 .50 .53 .56 .58 .44 .34 .11 .35 .47 .46 .50 .48 .47 .47
32 .53 60 .58 – .58 .67 .59 .49 .39 .29 .10 .31 .38 .41 .37 .46 .43 .38
33 .58 .50 .50 .58 – .85 .59 .48 .28 .23 .07 .30 .42 .46 .49 .56 .49 .43
34 .61 .54 .53 .67 .85 – .63 .49 .31 .22 .08 .35 .40 .45 .50 .61 .53 .48
35 .58 .59 .56 .59 .59 .63 – .57 .45 .33 .13 .40 .41 .45 .53 .48 .43 .46
36 .56 .60 .58 .49 .48 .49 .57 – .49 .26 .05 .31 .43 .48 .47 .49 .50 .40
37 .29 .44 .44 .39 .28 .31 .45 .49 – .27 .15 .43 .38 .35 .39 .37 .33 .36
38 .28 .38 .34 .29 .23 .22 .33 .26 .27 – .47 .43 .30 .39 .43 .24 .30 .31
39 .00 .09 .11 .10 .07 .08 .13 .05 .15 .47 – .24 .24 .15 .23 .03 .02 -.02
40 .33 .36 .35 .31 .30 .35 .40 .31 .43 .43 .24 – .44 .58 .50 .43 .45 .51
41 .32 .46 .47 .38 .42 .40 .41 .43 .38 .30 .24 .44 – .68 .43 .37 .37 .36
G7
42 .48 .50 .46 .41 .46 .45 .45 .48 .35 .39 .15 .58 .68 – .64 .64 .64 .53
43 .47 .52 .50 .37 .49 .50 .53 .47 .39 .43 .23 .50 .43 .64 – .55 .56 .46
44 .64 .54 .48 .46 .56 .61 .48 .49 .37 .24 .03 .43 .37 .64 .55 – .88 .74
45 .60 .53 .47 .43 .49 .53 .43 .50 .33 .30 .02 .45 .37 .64 .56 .88 – .75
46 .62 .53 .47 .38 .43 .48 .46 .40 .36 .31 -.02 .51 .36 .53 .46 .74 .75 –
G8