Diagnosing autism spectrum disorder: medical and social perspectives
Affiliated staffSusan Kelly at Egenis, Brahm Norwich and Huw Williams at Exeter University, Tamsin Ford at the PCMD, and Colin Steer, Laura Miller, Alan Emond, and Jean Golding at Bristol University.
ContactHomepages: , , Brahm Norwich, Huw Williams, Alan Emond, and Jean Golding. Email: email@example.com
Autism Spectrum Disorders are defined by a triad of behaviours presented at the time of diagnosis, listed as impairments in social interaction, impairments in communication and repetitive behaviour. In the UK, a medical diagnosis of ASD can act as a gatekeeping mechanism to release educational, social, professional and medical resources. There is a bewildering array of social communication and interaction intervention approaches but few are supported by scientific studies. Nevertheless, reviews have concluded that there are enough positive outcomes to indicate that some form of intervention is warranted.
It is generally accepted that ASD is partially genetically determined and diagnosis should be made as early as possible to treat and manage the condition effectively. But sociologists, autistic adults and some parents argue that ASD is in part socially constructed and that a shift is required in the norms and values of society that deem autistic behaviours abnormal.
The project aimed to explore the developmental trajectory of social skills before and after ASD diagnosis, for a small group of children. It also examined the dilemmas parents face when they consider a diagnosis. Further research established that a substantial number of children who present autistic difficulties remain undiagnosed, and explored some the reasons why this might be.
A multi stage secondary analysis of longitudinal data was carried out:
- Identifying autistic traits most predictive of receiving a diagnosis. This involved logistic regression to find the traits of receiving an ASD diagnosis, then defining a composite ASD trait with appropriate weightings.
- Looking at social and demographic factors to see which predict ASD diagnosis.
- Analysis of developmental tarjectory of prosocial behaviour before and after diagnosis.
Two qualitative studies took place, addressing:
- Lay understandings concerning the increasing prevalence of these disorders
- Parental dilemmas and descision making proce4sses before receiving a diagnosis
- How do these differ between mothers and fathers? (uncompleted)
Interviews with parents whose children are undergoing diagnosis are potentially sensitive. Ethical permission was granted for this study by the University of Exeter HUSS research ethics committee, and individuals will be requested to give written consent prior to the interview.
Russell G. & Norwich, B. Diagnosis, dilemmas and destigmatization: parental perspectives on diagnosing autism spectrum disorders. Clinical Child Psychology and Paychiatry (in press)
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