The COVID-19 restrictions are described from my standpoint with my mother living in residential c... more The COVID-19 restrictions are described from my standpoint with my mother living in residential care. I argue that restrictions have saved my mother’s body, through destroying her mental capacity. The unstated assumption – live bodies justify sacrificed minds – are voiced. Her quality of life remains at an all-time low, with her body preserved only through the sapping of life’s relevance through a drastic reduction in meaningful contact with her family and loved ones. I believe that my mother never would have wished to be kept alive at this cost, but, unfortunately, she no longer has capacity to discuss such issues.
The diagnosis of autism can be challenging, particularly if an individual coming for assessment i... more The diagnosis of autism can be challenging, particularly if an individual coming for assessment is considered to be near the diagnostic threshold. It is important to understand the experiences and challenges of diagnosis from the perspective of clinicians. In this study, 21 in-depth interviews were conducted with clinicians working in specialist autism assessment teams in adult and children's services in England. Interviews were recorded and transcripts were analysed thematically. We identified four themes that represented how clinicians were frequently engaged with juggling their own professional understanding of what autism is with other factors such as the results of standardised tests and the views of patients and carers, in the context of limited resources: institutional pressure, making diagnosis make sense, seeing through an autism lens and just tools. The study illuminates the diagnostic process as a socially situated activity. We suggest that an examination of the benef...
Supplemental material, sj-pdf-1-aut-10.1177_13623613211030392 for Autism diagnosis as a social pr... more Supplemental material, sj-pdf-1-aut-10.1177_13623613211030392 for Autism diagnosis as a social process by Jennie Hayes, Tamsin Ford, Rose McCabe and Ginny Russell in Autism
The Strengths and Difficulties Questionnaire (SDQ) is widely used as an international standardise... more The Strengths and Difficulties Questionnaire (SDQ) is widely used as an international standardised instrument measuring child behaviour. The primary aim of our study was to examine whether behavioral symptoms measured by SDQ were elevated among children with autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD) relative to the rest of the population, and to examine the predictive value of the SDQ for outcome of parent-reported clinical diagnosis of ASD/ADHD. A secondary aim was to examine the extent of overlap in symptoms between children diagnosed with these two disorders, as measured by the SDQ subscales. A cross-sectional secondary analysis of data from the Millennium Birth Cohort (n = 19,519), was conducted. Data were weighted to be representative of the UK population as a whole. ADHD or ASD identified by a medical doctor or health professional were reported by parents in 2008 and this was the case definition of diagnosis; (ADHD n = 173, ASD n = 209,...
Diagnostic assessment tools are widely used instruments in research and clinical practice to asse... more Diagnostic assessment tools are widely used instruments in research and clinical practice to assess and evaluate autism symptoms for both children and adults. These tools typically involve observing the child or adult under assessment, and rating their behaviour for signs or so-called symptoms of autism. In order to examine how autism diagnosis is constructed, how diagnostic tools are positioned, and how their trainings are delivered, we paid for four places on a training course for a diagnostic tool. We asked the attendees (the first four authors) to each produce a critical commentary about their impressions of the training and the diagnostic tool itself. Their commentaries are published here in full. They have various disciplinary backgrounds: one is a social scientist, one an ethicist, one a psychiatrist, and one a developmental psychologist. The commentaries are followed by a concluding section that summarises the themes, commonalities, and differences between their accounts of...
BACKGROUND Autism spectrum disorder is a diagnosis that is increasingly applied; however, previou... more BACKGROUND Autism spectrum disorder is a diagnosis that is increasingly applied; however, previous studies have conflicting findings whether rates of diagnosis rates continue to grow in the UK. This study tested whether the proportion of people receiving a new autism diagnosis has been increasing over a twenty-year period, both overall and by subgroups. METHOD Population-based study utilizing the Clinical Practice Research Datalink (CPRD) primary care database, which contains patients registered with practices contributing data to the CPRD between 1998 and 2018 (N = 6,786,212 in 1998 to N = 9,594,598 in 2018). 65,665 patients had a diagnosis of autism recorded in 2018. Time trend of new (incident) cases of autism diagnosis was plotted for all, and stratified by gender, diagnostic subtypes, and developmental stage: infancy and preschool, 0-5 years old; childhood, 6-11 years old; adolescence, 12-19 years old; adults, over 19 years old. RESULTS There was a 787%, exponential increase in recorded incidence of autism diagnoses between 1998 and 2018; R2 = 0.98, exponentiated coefficient = 1.07, 95% CI [1.06, 1.08], p < .001. The increase in diagnoses was greater for females than males (exponentiated interaction coefficient = 1.02, 95% CI [1.01, 1.03], p < .001) and moderated by age band, with the greatest rises in diagnostic incidence among adults (exponentiated interaction coefficient = 1.06, 95% CI [1.04, 1.07], p < .001). CONCLUSIONS Increases could be due to growth in prevalence or, more likely, increased reporting and application of diagnosis. Rising diagnosis among adults, females and higher functioning individuals suggest augmented recognition underpins these changes.
The UK’s National Health Service (NHS) generates uniquely rich data that should be rapidly deploy... more The UK’s National Health Service (NHS) generates uniquely rich data that should be rapidly deployed for policy and service improvement, yet researchers report difficulties in accessing these data. Paradoxically, these restrictions are occurring at the same time as the open science movement, which encourages data sharing to improve the rigour, transparency, and replicability of research. We describe the urgency of improvements to data access and propose solutions from a mental health research perspective, although the issues discussed extend to all areas in which analysis and linkage of health data support policy and practice. Actions are needed at every level, from data users and data custodians to government (panel).
The COVID-19 restrictions are described from my standpoint with my mother living in residential c... more The COVID-19 restrictions are described from my standpoint with my mother living in residential care. I argue that restrictions have saved my mother’s body, through destroying her mental capacity. The unstated assumption – live bodies justify sacrificed minds – are voiced. Her quality of life remains at an all-time low, with her body preserved only through the sapping of life’s relevance through a drastic reduction in meaningful contact with her family and loved ones. I believe that my mother never would have wished to be kept alive at this cost, but, unfortunately, she no longer has capacity to discuss such issues.
The diagnosis of autism can be challenging, particularly if an individual coming for assessment i... more The diagnosis of autism can be challenging, particularly if an individual coming for assessment is considered to be near the diagnostic threshold. It is important to understand the experiences and challenges of diagnosis from the perspective of clinicians. In this study, 21 in-depth interviews were conducted with clinicians working in specialist autism assessment teams in adult and children's services in England. Interviews were recorded and transcripts were analysed thematically. We identified four themes that represented how clinicians were frequently engaged with juggling their own professional understanding of what autism is with other factors such as the results of standardised tests and the views of patients and carers, in the context of limited resources: institutional pressure, making diagnosis make sense, seeing through an autism lens and just tools. The study illuminates the diagnostic process as a socially situated activity. We suggest that an examination of the benef...
Supplemental material, sj-pdf-1-aut-10.1177_13623613211030392 for Autism diagnosis as a social pr... more Supplemental material, sj-pdf-1-aut-10.1177_13623613211030392 for Autism diagnosis as a social process by Jennie Hayes, Tamsin Ford, Rose McCabe and Ginny Russell in Autism
The Strengths and Difficulties Questionnaire (SDQ) is widely used as an international standardise... more The Strengths and Difficulties Questionnaire (SDQ) is widely used as an international standardised instrument measuring child behaviour. The primary aim of our study was to examine whether behavioral symptoms measured by SDQ were elevated among children with autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD) relative to the rest of the population, and to examine the predictive value of the SDQ for outcome of parent-reported clinical diagnosis of ASD/ADHD. A secondary aim was to examine the extent of overlap in symptoms between children diagnosed with these two disorders, as measured by the SDQ subscales. A cross-sectional secondary analysis of data from the Millennium Birth Cohort (n = 19,519), was conducted. Data were weighted to be representative of the UK population as a whole. ADHD or ASD identified by a medical doctor or health professional were reported by parents in 2008 and this was the case definition of diagnosis; (ADHD n = 173, ASD n = 209,...
Diagnostic assessment tools are widely used instruments in research and clinical practice to asse... more Diagnostic assessment tools are widely used instruments in research and clinical practice to assess and evaluate autism symptoms for both children and adults. These tools typically involve observing the child or adult under assessment, and rating their behaviour for signs or so-called symptoms of autism. In order to examine how autism diagnosis is constructed, how diagnostic tools are positioned, and how their trainings are delivered, we paid for four places on a training course for a diagnostic tool. We asked the attendees (the first four authors) to each produce a critical commentary about their impressions of the training and the diagnostic tool itself. Their commentaries are published here in full. They have various disciplinary backgrounds: one is a social scientist, one an ethicist, one a psychiatrist, and one a developmental psychologist. The commentaries are followed by a concluding section that summarises the themes, commonalities, and differences between their accounts of...
BACKGROUND Autism spectrum disorder is a diagnosis that is increasingly applied; however, previou... more BACKGROUND Autism spectrum disorder is a diagnosis that is increasingly applied; however, previous studies have conflicting findings whether rates of diagnosis rates continue to grow in the UK. This study tested whether the proportion of people receiving a new autism diagnosis has been increasing over a twenty-year period, both overall and by subgroups. METHOD Population-based study utilizing the Clinical Practice Research Datalink (CPRD) primary care database, which contains patients registered with practices contributing data to the CPRD between 1998 and 2018 (N = 6,786,212 in 1998 to N = 9,594,598 in 2018). 65,665 patients had a diagnosis of autism recorded in 2018. Time trend of new (incident) cases of autism diagnosis was plotted for all, and stratified by gender, diagnostic subtypes, and developmental stage: infancy and preschool, 0-5 years old; childhood, 6-11 years old; adolescence, 12-19 years old; adults, over 19 years old. RESULTS There was a 787%, exponential increase in recorded incidence of autism diagnoses between 1998 and 2018; R2 = 0.98, exponentiated coefficient = 1.07, 95% CI [1.06, 1.08], p < .001. The increase in diagnoses was greater for females than males (exponentiated interaction coefficient = 1.02, 95% CI [1.01, 1.03], p < .001) and moderated by age band, with the greatest rises in diagnostic incidence among adults (exponentiated interaction coefficient = 1.06, 95% CI [1.04, 1.07], p < .001). CONCLUSIONS Increases could be due to growth in prevalence or, more likely, increased reporting and application of diagnosis. Rising diagnosis among adults, females and higher functioning individuals suggest augmented recognition underpins these changes.
The UK’s National Health Service (NHS) generates uniquely rich data that should be rapidly deploy... more The UK’s National Health Service (NHS) generates uniquely rich data that should be rapidly deployed for policy and service improvement, yet researchers report difficulties in accessing these data. Paradoxically, these restrictions are occurring at the same time as the open science movement, which encourages data sharing to improve the rigour, transparency, and replicability of research. We describe the urgency of improvements to data access and propose solutions from a mental health research perspective, although the issues discussed extend to all areas in which analysis and linkage of health data support policy and practice. Actions are needed at every level, from data users and data custodians to government (panel).
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