BackgroundDemand for diagnostic assessment in children with possible autism has recently increase... more BackgroundDemand for diagnostic assessment in children with possible autism has recently increased significantly. Services are under pressure to deliver timely and high-quality diagnosis, following National Institute and Care Excellence multidisciplinary assessment guidelines. This UK National Health Service study aimed to answer: how many hours of health professional time are required to deliver autism diagnostic assessment, and how much does this cost?.MethodCase notes of 20 children (1–16 yrs.) from 27 NHS trusts, assessed through an autism diagnostic pathway in the previous year, were examined retrospectively. Data included: hours of professional time, diagnostic outcome. Assessment costs calculated using standardised NHS tariffs.Results488 children (aged 21–195 months, mean 82.9 months, SD 39.36) from 22 Child Development Services (CDS), four Child and Adolescent Mental Health Services (CAMHS) and one tertiary centre; 87% were either under 5 (36%) or 5 to 11 years (51%). Childr...
This article describes a systematic investigation into intolerance of uncertainty (IU) behaviours... more This article describes a systematic investigation into intolerance of uncertainty (IU) behaviours. This involved systematic searches of IU behaviours, developing an expert consensus of the different types of IU behaviour and classifying behaviours into these categories.
This record contains two files comprising the material used in study 2 of Stuart, L., Grahame, V.... more This record contains two files comprising the material used in study 2 of Stuart, L., Grahame, V., Honey, E., & Freeston, M. (2020). Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents. <i>Child and Adolescent Mental Health</i>, <i>25</i>(2), 59-67.The first file is a semi-structured interview used to explore a caregiver's perception of their child's behaviour in uncertain situations. The second provides a range of examples of uncertain situations where a child or young person may experience distress related to uncertainty; these examples may be used to prompt the participant.
Many children with austism spectrum disorder (ASD) show difficulties containing anxiety, acute di... more Many children with austism spectrum disorder (ASD) show difficulties containing anxiety, acute distress, behavioural avoidance or control, and sometimes to an extreme degree. Not nearly enough is known about the variety of likely origins of such presentations or their course. Pathological Demand Avoidance (PDA) has been advocated as a discrete developmental syndrome explaining such characteristics when extreme, but its status as an entity is controversial and to date poorly evidenced. Stuart et al. make one of the first studies into factors underlying PDA, by testing Intolerance of uncertainty and anxiety as explanatory paradigms. There is a circularity in their sampling design and common respondent methods, which, alongside the uncertain status of PDA itself, inevitably limits firm conclusions from their study. However, they do develop important concepts and hypotheses that could and should be tested in representative samples across ASD, using comparative, longitudinal and interven...
Sensory atypicalities are a common feature of autism spectrum disorder (ASD). To date, the relati... more Sensory atypicalities are a common feature of autism spectrum disorder (ASD). To date, the relationship between sensory atypicalities in dyads of children with ASD and their parents has not been investigated. Exploring these relationships can contribute to an understanding of how phenotypic profiles may be inherited, and the extent to which familial factors might contribute towards children's sensory profiles and constitute an aspect of the broader autism phenotype (BAP). Parents of 44 children with ASD and 30 typically developing (TD) children, aged between 3 and 14 years, participated. Information about children's sensory experiences was collected through parent report using the Sensory Profile questionnaire. Information about parental sensory experiences was collected via self‐report using the Adolescent/Adult Sensory Profile. Parents of children with ASD had significantly higher scores than parents of TD children in relation to low registration, over responsivity, and ta...
Many children with autism spectrum disorder (ASD) experience high levels of anxiety. A widely use... more Many children with autism spectrum disorder (ASD) experience high levels of anxiety. A widely used measure for typically developing children is the Revised Child Anxiety and Depression Scale (RCADS). However, such anxiety measures may require adaptation to accommodate characteristics of those with ASD. An adapted version of the RCADS was created based on empirical evidence of anxiety phenomenology in ASD, which included additional items related to sensory anxiety, intolerance of uncertainty, and phobias. Content validity was refined during focus groups with parents. Polychoric factor analysis was undertaken on data from 170 children with ASD, aged 8‐16, and their parents. This process resulted in the creation of a new 24 item scale (self and parent report) each with four subscales: Performance Anxiety, Uncertainty, Anxious Arousal, and Separation Anxiety, with evidence of good reliability and validity. The freely available Anxiety Scale for Children ‐ ASD, Parent and Child versions ...
Journal of Applied Research in Intellectual Disabilities, 2016
BackgroundAnxiety is a common problem for children with autism spectrum disorder (ASD). Recent re... more BackgroundAnxiety is a common problem for children with autism spectrum disorder (ASD). Recent research indicates that intolerance of uncertainty (IU) may be an important aspect of anxiety for this population. IU is the belief that uncertainty is upsetting, and not knowing what is going to happen is negative. There is little known about the phenomenology of IU in children with ASD. We therefore present data from parent focus groups exploring this concept in children with ASD.MethodsParticipants were asked to differentiate IU from dislike of change and fear, and to discuss examples of IU and the strategies they use to manage it. Their experiences of IU and strategies are presented.ResultsIU was evident across novel and familiar situations and parents used a variety of strategies to manage IU. Their experiences of IU and strategies used are presented.ConclusionsParticipants were able to identify and provide examples of IU suggesting that it is a recognizable construct among children w...
BackgroundDemand for diagnostic assessment in children with possible autism has recently increase... more BackgroundDemand for diagnostic assessment in children with possible autism has recently increased significantly. Services are under pressure to deliver timely and high-quality diagnosis, following National Institute and Care Excellence multidisciplinary assessment guidelines. This UK National Health Service study aimed to answer: how many hours of health professional time are required to deliver autism diagnostic assessment, and how much does this cost?.MethodCase notes of 20 children (1–16 yrs.) from 27 NHS trusts, assessed through an autism diagnostic pathway in the previous year, were examined retrospectively. Data included: hours of professional time, diagnostic outcome. Assessment costs calculated using standardised NHS tariffs.Results488 children (aged 21–195 months, mean 82.9 months, SD 39.36) from 22 Child Development Services (CDS), four Child and Adolescent Mental Health Services (CAMHS) and one tertiary centre; 87% were either under 5 (36%) or 5 to 11 years (51%). Childr...
This article describes a systematic investigation into intolerance of uncertainty (IU) behaviours... more This article describes a systematic investigation into intolerance of uncertainty (IU) behaviours. This involved systematic searches of IU behaviours, developing an expert consensus of the different types of IU behaviour and classifying behaviours into these categories.
This record contains two files comprising the material used in study 2 of Stuart, L., Grahame, V.... more This record contains two files comprising the material used in study 2 of Stuart, L., Grahame, V., Honey, E., & Freeston, M. (2020). Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents. <i>Child and Adolescent Mental Health</i>, <i>25</i>(2), 59-67.The first file is a semi-structured interview used to explore a caregiver's perception of their child's behaviour in uncertain situations. The second provides a range of examples of uncertain situations where a child or young person may experience distress related to uncertainty; these examples may be used to prompt the participant.
Many children with austism spectrum disorder (ASD) show difficulties containing anxiety, acute di... more Many children with austism spectrum disorder (ASD) show difficulties containing anxiety, acute distress, behavioural avoidance or control, and sometimes to an extreme degree. Not nearly enough is known about the variety of likely origins of such presentations or their course. Pathological Demand Avoidance (PDA) has been advocated as a discrete developmental syndrome explaining such characteristics when extreme, but its status as an entity is controversial and to date poorly evidenced. Stuart et al. make one of the first studies into factors underlying PDA, by testing Intolerance of uncertainty and anxiety as explanatory paradigms. There is a circularity in their sampling design and common respondent methods, which, alongside the uncertain status of PDA itself, inevitably limits firm conclusions from their study. However, they do develop important concepts and hypotheses that could and should be tested in representative samples across ASD, using comparative, longitudinal and interven...
Sensory atypicalities are a common feature of autism spectrum disorder (ASD). To date, the relati... more Sensory atypicalities are a common feature of autism spectrum disorder (ASD). To date, the relationship between sensory atypicalities in dyads of children with ASD and their parents has not been investigated. Exploring these relationships can contribute to an understanding of how phenotypic profiles may be inherited, and the extent to which familial factors might contribute towards children's sensory profiles and constitute an aspect of the broader autism phenotype (BAP). Parents of 44 children with ASD and 30 typically developing (TD) children, aged between 3 and 14 years, participated. Information about children's sensory experiences was collected through parent report using the Sensory Profile questionnaire. Information about parental sensory experiences was collected via self‐report using the Adolescent/Adult Sensory Profile. Parents of children with ASD had significantly higher scores than parents of TD children in relation to low registration, over responsivity, and ta...
Many children with autism spectrum disorder (ASD) experience high levels of anxiety. A widely use... more Many children with autism spectrum disorder (ASD) experience high levels of anxiety. A widely used measure for typically developing children is the Revised Child Anxiety and Depression Scale (RCADS). However, such anxiety measures may require adaptation to accommodate characteristics of those with ASD. An adapted version of the RCADS was created based on empirical evidence of anxiety phenomenology in ASD, which included additional items related to sensory anxiety, intolerance of uncertainty, and phobias. Content validity was refined during focus groups with parents. Polychoric factor analysis was undertaken on data from 170 children with ASD, aged 8‐16, and their parents. This process resulted in the creation of a new 24 item scale (self and parent report) each with four subscales: Performance Anxiety, Uncertainty, Anxious Arousal, and Separation Anxiety, with evidence of good reliability and validity. The freely available Anxiety Scale for Children ‐ ASD, Parent and Child versions ...
Journal of Applied Research in Intellectual Disabilities, 2016
BackgroundAnxiety is a common problem for children with autism spectrum disorder (ASD). Recent re... more BackgroundAnxiety is a common problem for children with autism spectrum disorder (ASD). Recent research indicates that intolerance of uncertainty (IU) may be an important aspect of anxiety for this population. IU is the belief that uncertainty is upsetting, and not knowing what is going to happen is negative. There is little known about the phenomenology of IU in children with ASD. We therefore present data from parent focus groups exploring this concept in children with ASD.MethodsParticipants were asked to differentiate IU from dislike of change and fear, and to discuss examples of IU and the strategies they use to manage it. Their experiences of IU and strategies are presented.ResultsIU was evident across novel and familiar situations and parents used a variety of strategies to manage IU. Their experiences of IU and strategies used are presented.ConclusionsParticipants were able to identify and provide examples of IU suggesting that it is a recognizable construct among children w...
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