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Egenis · Research

Diagnosing autism spectrum disorder: medical and social perspectives

Ginny Russell

Start date


Affiliated staff

Susan 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.


Homepages: , , Brahm Norwich, Huw Williams, Alan Emond, and Jean Golding. Email: g.russell@ex.ac.uk

Funded by



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:

  1. 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.
  2. Looking at social and demographic factors to see which predict ASD diagnosis.
  3. Analysis of developmental tarjectory of prosocial behaviour before and after diagnosis.

Two qualitative studies took place, addressing:

  1. Lay understandings concerning the increasing prevalence of these disorders
  2. Parental dilemmas and descision making proce4sses before receiving a diagnosis
  3. 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)

Russell, G. and Kelly, S., Looking beyond risk: a study of lay epidemiology of childhood disorders. Health, Risk and Society 13 (2), 2011: 129-145.

Russell, G., Social and demographic factors that influence the diagnosis of autistic spectrum disorders. Social Psychiatry and Psychiatric Epidemiology (Online First) October 2010

Russell, G., Kelly, S., & Golding, J., A qualitative analysis of lay beliefs about the aetiology and prevalence of autistic spectrum disorders. Child: Care, Health and Development, 36 (3), 2009: 431-436.

Russell, G., Ford, T., Steer, C., Golding, J., Identification of children with the same level of impairment as children on the autistic spectrum, and analysis of their service use. Journal of Child Psychology and Psychiatry, 51 (3), 2010: 643-651.


Parental perspectives on autism - Special Educational Needs Research Group, School of Education and Lifelong Learning, University of Exeter, 15 February 2011

The developmental trajectory of prosocial behaviour for autistic children enrolled in the ALSPAC cohort - Bristol Autism Group, University of Bristol, 14 December 2010

Diagnosis of childhood disorders: Psychological and social implications - Plymouth Autism Network, University of Plymouth, 24 November 2010

Public engagement: Why it matters - Keynote address: Engaging with Radical Ideas Conference, University of Exeter, 22 November 2010

Social and demographic factors that influence the diagnosis of autistic spectrum disorders. Autism 2010, Autism Cymru 6th International on-line conference, Awares Conference Centre, 1-7 November, 2010

The challenge of getting a representative sample of the public to engage with science - Science and the Public, Imperial College, London, July 2010

The muddle of mixing - problems of an interdisciplinary and mixed methods design - University of Plymouth, May 2010

Autism: to diagnose or not to diagnose? - PMS Child Health Group seminar, September 2009

Funding for public engagement: whose agenda? - Two way public engagement conference, Copenhagen University, August 2009

Explanations of the increasing prevalence of Autistic Spectrum Disorders: ‘lay’ and ‘expert’ perspectives - Egenis seminar, May 2009

Identifying undiagnosed children on the autism spectrum – HUSS conference, University of Exeter, May 2009

A study of “lay” correspondence to “expert” epidemiologists’ - Publics: Embodied, Imagined, Performed, Cesagen workshop, Lancaster University 27- 28 January, 2009.

Is commercial science fairly reported? Royal Society, London, 18 December 2002