Diagnosis, disclosure, and having autism: An interpretative phenomenological analysis of the perceptions of young people with autism

References

• Avdi E., Griffin C., Brough S. Parents' constructions of the ‘problem’ during assessment and diagnosis of their child for autistic spectrum disorder. Journal of Health Psychology 2000; 5: 241–254
   PubMedGoogle Scholar
• Barnard J., Harvey V., Prior A., Potter D. Ignored or ineligible? The reality for adults with autism spectrum disorders. National Autistic Society, London 2001
   Google Scholar
• Baron‐Cohen S. Is Asperger syndrome/high‐functioning autism necessarily a disability?. Development and Psychopathology 2000; 12: 489–500
   PubMed Web of Science ®Google Scholar
• Bogdan R. C., Biklen S. K. Qualitative research for education: An introduction to theory and methods. Allyn & Bacon, Needham Heights, MA 1992
   Google Scholar
• Brogan C. A., Knussen C. The disclosure of a diagnosis of an autistic spectrum disorder: Determinants of satisfaction in a sample of Scottish parents. Autism 2003; 7: 31–46
   PubMed Web of Science ®Google Scholar
• Bury M. Chronic illness as biographical disruption. Sociology of Health and Illness 1982; 4: 167–182
   PubMedGoogle Scholar
• Charmaz K. Grounded theory. Rethinking psychology, Smith J. A, Harré R, Van Langenhove L. Sage, London 1995; 27–49
   Google Scholar
• Claflin C. J., Barbarin O. A. Does “telling” less protect more? Relationships among age, information disclosure, and what children with cancer see and feel. Journal of Pediatric Psychology 1991; 16: 169–191
   PubMed Web of Science ®Google Scholar
• Connors C., Stalker K. Children's experience of disability: Pointers to a social model of childhood disability. Disability & Society 2007; 22((1))19–33
   Web of Science ®Google Scholar
• Handbook of qualitative research, Denzin N. K, Lincoln Y. S. Sage, Thousand Oaks, CA 1994
   Google Scholar
• Department of Health. National Service Framework for children, young people and maternity services: Disabled children and young people and those with complex health needs. Department of Health, London 2004
   Google Scholar
• Elliott R., Fischer C. T., Rennie D. L. Evolving guidelines for the publication of qualitative research studies in psychology and related fields. British Journal of Clinical Psychology 1999; 38: 215–229
   PubMed Web of Science ®Google Scholar
• Goffman E. Stigma. Harmondsworth Press, Middlesex, UK 1968
   Google Scholar
• Grandin T., Scariano M. Emergence: Labelled autistic. Arena, Novato, CA 1986
   Google Scholar
• Gray D. E. Perceptions of stigma: The parents of autistic children. Sociology of Health and Illness 1993; 15: 102–120
   Web of Science ®Google Scholar
• Gray D. E. Everybody just freezes. Everybody is just embarrassed: Felt and enacted stigma among parents of children with high functioning autism. Sociology of Health and Illness 2002; 24: 734–749
   Web of Science ®Google Scholar
• Howlin P., Asgharian A. The diagnosis of autism and Asperger syndrome: Findings from a survey of 770 families. Developmental Medicine and Child Neurology 1999; 41: 834–839
   PubMed Web of Science ®Google Scholar
• Hurlbutt K., Chalmers L. Adults with autism speak out: Perceptions of their life experiences. Focus on Autism and Other Developmental Disabilities 2002; 17: 103–111
   Google Scholar
• Jones G. Giving the diagnosis to the young person with Asperger Syndrome or high functioning autism. Good Autism Practice 2001; 2((2))65–73
   Google Scholar
• Khine G. Meeting the needs of families with disabled children: What works and what's promising?. Barnados, England 2003
   Google Scholar
• MacLeod A., Johnston P. Standing out and fitting in: A report on a support group for individuals with Asperger syndrome using a personal account. British Journal of Special Education 2007; 34: 83–88
   Google Scholar
• Mansell W., Morris K. A survey of parents' reactions to the diagnosis of an autistic spectrum disorder by a local service: Access to information and use of services. Autism 2004; 8: 387–407
   PubMed Web of Science ®Google Scholar
• Mathieson C. M. Interviewing the ill and the healthy. Paradigm or process?. Qualitative health psychology: Theories and methods, Murray M, Chamberlain K. Sage, London 1999; 117–132
   Google Scholar
• Mesibov G. B., Handlan S. Adolescents and adults with autism. Handbook of autism and pervasive developmental disorders, Cohen D. J, Volkmar F. R. John Wiley & Sons, New York 1997; 309–322
   Google Scholar
• Midence K., O'Neill M. The experience of parents in the diagnosis of autism. Autism 1999; 3: 273–285
   Google Scholar
• Nissenbaum M. S., Tollefson N., Reese R. M. The interpretative conference: Sharing a diagnosis of autism with families. Focus on Autism and Other Developmental Disabilities 2002; 17: 30–43
   Google Scholar
• O'Neill M., Jones R. S. P. Sensory‐perceptual abnormalities in autism: A case for more research?. Journal of Autism and Developmental Disorders 1997; 27: 283–293
   PubMed Web of Science ®Google Scholar
• Pinder R. The management of chronic illness: Patient and doctor perspectives on Parkinson's disease. Macmillan, London 1990
   Google Scholar
• Reid K., Flowers P., Larkin M. Exploring lived experience. The Psychologist 2005; 18((1))20–23
   Google Scholar
• Rumsey J. M. Neuropsychological studies of high‐level autism. High‐functioning individuals with autism. Current issues in autism, Schopler E, Mesibov G. Plenum Press, New York 1992; 41–64
   Google Scholar
• Scambler G., Hopkins A. Being epileptic: Coming to terms with stigma. Sociology of Health and Illness 1986; 8: 26–43
   Web of Science ®Google Scholar
• Sloper P. Meeting the needs of disabled children. Department of Health, London 2002
   Google Scholar
• Smith J. A. Beyond the divide between cognition and discourse: Using interpretative phenomenological analysis in health psychology. Psychology and Health 1996; 11: 261–271
   Web of Science ®Google Scholar
• Smith J. A., Jarman M., Osborn M. Doing interpretative phenomenological analysis. Qualitative health psychology: Theories and methods, Murray M, Chamberlain K. Sage, London 1999; 219–240
   Google Scholar
• Smith J. A., Osborn M. Interpretative phenomenological analysis. Qualitative psychology: A practical guide to research methods, Smith J. A. Sage, London 2004; 51–80
   Google Scholar
• Todd S., Shearn J. Family dilemmas and secrets: Parents' disclosure of information to their adult offspring with learning disabilities. Disability and Society 1997; 12: 341–366
   Web of Science ®Google Scholar
• Willey L. H. To tell or not to tell: That is the Aspie question. Coming out Asperger, Murray D. Jessica Kingsley Publishers, London 2006; 19–31
   Google Scholar
• Williams E. Who really needs a ‘theory’ of mind?. Theory and Psychology 2004; 14: 704–724
   Web of Science ®Google Scholar
• Wolf L., Noh S., Fisman S. N., Speechley M. Brief report: Psychological effects of parenting stress on parents of autistic children. Journal of Autism and Developmental Disorders 1989; 19: 157–166
   PubMed Web of Science ®Google Scholar
• Young B., Dixon‐Woods M., Windridge K. C., Heney D. Managing communication with young people who have a potentially life‐threatening chronic illness: Qualitative study of patients and parents. British Medical Journal 2003; 326((7384))305–309
   Google Scholar