High-Functioning Autism and Asperger’s Disorder: Utility and Meaning for Families
We used framework analysis to investigate the utility of pervasive developmental disorder diagnoses, interviewing young people (aged 9–16 years) with high-functioning autistic disorder (AD) and Asperger’s disorder (AsD), and their parents. Twenty two participants from ten families described both gains and costs resulting from diagnosis. Perceived advantages of AD and AsD diagnosis were increased understanding and practical support, and parental empowerment. Disadvantages included the effects of stigma and concerns about validity. Participants tended to consider AsD and AD as interchangeable terms. Findings suggest that the utility of AD and AsD depends upon both their validity and how these diagnoses are received in their cultural, economic and legislative context. Improvement of post-diagnostic services will improve the utility of AD and AsD.
KeywordsAutistic disorder Asperger’s disorder Utility Qualitative research Framework analysis
- American Psychiatric Association. (2000). Diagnostic and Statistical manual of mental disorders (4th ed.). Text Revision. Washington, DC: American Psychiatric Association.Google Scholar
- American Psychiatric Association. (2010). DSM V Development: Autistic disorder. Retrieved 22 October 2010 from. http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94.
- Chilvers, R. (2007). The hidden world of autism. London: Jessica Kingsley Publishers.Google Scholar
- Daniels, A. M., Rosenberg, R. E., Law, J. K., Lord, C., Kaufmann, W. E., & Law, P. A. (2010). Stability of initial autism spectrum disorder diagnoses in community settings. Journal of Autism and Developmental Disorders, 18, 236–246.Google Scholar
- Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250.Google Scholar
- Landsman, G. (2003). Emplotting children’s lives: Developmental delay vs. disability. Social Science and Medicine, 26, 1947–1960.Google Scholar
- Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Jr., Leventhal, B. L., Di Lavore, P. C., et al. (2000). The autism diagnostic observation schedule-generic: A standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30, 205–223.PubMedCrossRefGoogle Scholar
- Mahoney, W. J., Szatmari, P., MacLean, J. E., Bryson, S. E., Bartolucci, G., Walter, S. D., et al. (1998). Reliability and accuracy of differentiating pervasive developmental disorder subtypes. Journal of the American Academy of Child and Adolescent Psychiatry, 37(3), 278–285.PubMedCrossRefGoogle Scholar
- Mandy, W. P., Charman, T., Gilmour, J. & Skuse, D. (2011). Toward specifying pervasive developmental disorder not otherwise specified. Autism Research. doi:10.1002/aur.178.
- Newman, B., & Newman, P. (2008). Development through life: A psychosocial perspective (10th ed.). Belmont, CA: Wadsworth Cengage Learning.Google Scholar
- Ritchie, J., & Spencer, L. (1994). Qualitative data analysis for applied policy research. In A. Bryman & R. G. Burgess (Eds.), Analysing qualitative data. London: Routledge.Google Scholar
- Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: Prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child and Adolescent Psychiatry, 47, 921–929.PubMedCrossRefGoogle Scholar
- Skuse, D. H., Mandy, W., Steer, C., Miller, L. L., Goodman, R., Lawrence, K., et al. (2009). Social communication competence and functional adaptation in a General population of children: Preliminary evidence for sex-by-verbal IQ differential risk. Journal of the American Academy of Child and Adolescent Psychiatry, 48(2), 128–137.PubMedCrossRefGoogle Scholar
- Skuse, D., Warrington, R., Bishop, D., Chowdhury, U., Lau, J., Mandy, W., et al. (2004). The developmental, dimensional and diagnostic interview (3di): A novel computerized assessment for autism spectrum disorders. Journal of the American Academy of Child and Adolescent Psychiatry, 43, 548–558.PubMedCrossRefGoogle Scholar
- Smith, J. A. (1995). Semi-structured interviewing and qualitative analysis. In J. A. Smith, R. Harre, & L. Van Langenhove (Eds.), Rethinking methods in psychology. London: Sage.Google Scholar
- Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA: Sage.Google Scholar
- Streiner, D. L., & Norman, G. R. (1995). Health measurement scales. Oxford: Oxford University Press.Google Scholar
- Willig, C. (2008). Introducing qualitative research in psychology: Adventures in theory and method (2nd ed.). Buckingham: Open University Press.Google Scholar