‘Why are we an ignored group?’ Mainstream educational experiences and current life satisfaction of adults on the autism spectrum from an online survey

References

• Baird, G., E. Simonoff, A. Pickles, S. Chandler, T. Loucas, D. Meldrum, and T. Charman. 2006. “Prevalence of Disorders of the Autism Spectrum in a Population Cohort of Children in South Thames: The Special Needs and Autism Project (SNAP).” The Lancet 368 (9531): 210–215. doi: 10.1016/S0140-6736(06)69041-7
   PubMed Web of Science ®Google Scholar
• Batten, A., C. Corbett, M. Rosenblatt, L. Withers, and R. Yuille. 2006. Make School Make Sense: Autism and Education – The Reality for Families Today. London: The National Autistic Society.
   Google Scholar
• Benford, P., and P. Standen. 2009. “The Internet: A Comfortable Communication Medium for People with Asperger Syndrome (AS) and High Functioning Autism (HFA)?” Journal of Assistive Technologies 3 (2): 44–53.
   Google Scholar
• Billstedt, E., C. Gillberg, and C. Gillberg. 2005. “Autism After Adolescence: Population-based 13-to 22-year Follow-up Study of 120 Individuals with Autism Diagnosed in Childhood.” Journal of Autism and Developmental Disorders 35 (3): 351–360. doi: 10.1007/s10803-005-3302-5
   PubMed Web of Science ®Google Scholar
• Billstedt, E., I. C. Gillberg, and C. Gillberg. 2011. “Aspects of Quality of Life in Adults Diagnosed with Autism in Childhood A Population-based Study.” Autism 15 (1): 7–20. doi: 10.1177/1362361309346066
   PubMed Web of Science ®Google Scholar
• Blackburn, R. 2000. “Within and Without Autism.” Good Autism Practice 1 (1): 2–8.
   Google Scholar
• Blume, H. 1997. “Autism & The Internet” or “It’s The Wiring, Stupid.” Accessed May 12, 2014. http://web.mit.edu/m-i-t/articles/index_blume.html
   Google Scholar
• Brewster, S., and L. Coleyshaw. 2011. “Participation or Exclusion? Perspectives of Pupils with Autistic Spectrum Disorders on Their Participation in Leisure Activities.” British Journal of Learning Disabilities 39 (4): 284–291. doi: 10.1111/j.1468-3156.2010.00665.x
   Web of Science ®Google Scholar
• Burgess, A. F., and S. E. Gutstein. 2007. “Quality of Life for People with Autism: Raising the Standard for Evaluating Successful Outcomes.” Child and Adolescent Mental Health 12 (2): 80–86. doi: 10.1111/j.1475-3588.2006.00432.x
   PubMedGoogle Scholar
• Charman, T., E. Pellicano, L. V. Peacey, N. Peacey, K. Forward, and J. Dockrell. 2011. “What is Good Practice in Autism Education?” Autism Education Trust. Accessed February 12, 2014. http://www.autismeducationtrust.org.uk/resources/good%20practice%20report.aspx
   Google Scholar
• Cohen, L., L. Manion, and K. Morrison. 2011. Research Methods in Education. 7th ed. London: Routledge.
   Google Scholar
• Davidson, J. 2008. “Autistic Culture Online: Virtual Communication and Cultural Expression on the Spectrum.” Social & Cultural Geography 9 (7): 791–806.
   Google Scholar
• Di Gennaro, C., and W. H. Dutton. 2007. “Reconfiguring Friendships: Social Relationships and the Internet.” Information, Communication & Society 10 (5): 591–618. doi: 10.1080/13691180701657949
   Google Scholar
• DoH (Department of Health). 2006. “Our Health, Our Care, Our Say: A New Direction for Community Services.” The Stationery Office. Accessed February 12, 2014. http://www.official-documents.gov.uk/document/cm67/6737/6737.pdf
   Google Scholar
• DoH (Department of Health). 2010. “Fulfilling and Rewarding Lives: The Strategy for Adults with Autism in England.” The Stationery Office. Accessed February 12, 2014. http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_113369
   Google Scholar
• Eaves, L. C., and H. H. Ho. 2008. “Young Adult Outcome of Autism Spectrum Disorders.” Journal of Autism and Developmental Disorders 38 (4): 739–747. doi: 10.1007/s10803-007-0441-x
   PubMed Web of Science ®Google Scholar
• Edwards, T. L., E. E. Watkins, A. D. Lotfizadeh, and A. Poling. 2012. “Intervention Research to Benefit People with Autism: How Old are the Participants?” Research in Autism Spectrum Disorders 6 (3): 996–999. doi: 10.1016/j.rasd.2011.11.002
   Web of Science ®Google Scholar
• García-Villamisar, D., P. Wehman, and M. D. Navarro. 2002. “Changes in the Quality of Autistic People's Life that work in Supported and Sheltered Employment. A 5-year Follow-up Study.” Journal of Vocational Rehabilitation 17 (4): 309–312.
   Google Scholar
• Gilbert, R. L., N. A. Murphy, A. B. Krueger, A. R. Ludwig, and T. Y. Efron. 2013. “Psychological Benefits of Participation in Three-dimensional Virtual Worlds for Individuals with Real-world Disabilities.” International Journal of Disability, Development and Education 60 (3): 208–224. doi: 10.1080/1034912X.2013.812189
   Web of Science ®Google Scholar
• Hendricks, D. R., and P. Wehman. 2009. “Transition from School to Adulthood for Youth with Autism Spectrum Disorders Review and Recommendations.” Focus on Autism and Other Developmental Disabilities 24 (2): 77–88. doi: 10.1177/1088357608329827
   Web of Science ®Google Scholar
• Hesmondhalgh, M. 2006. Autism, Access and Inclusion on the Front Line. London: Jessica Kingsley Publishers.
   Google Scholar
• Howlin, P. 1997. “Prognosis in Autism: Do Specialist Treatments Affect Long-term Outcome?” European Child & Adolescent Psychiatry 6 (2): 55–72. doi: 10.1007/BF00566668
   PubMed Web of Science ®Google Scholar
• Howlin, P. 2000. “Outcome in Adult Life for More Able Individuals with Autism or Asperger Syndrome.” Autism 4 (1): 63–83. doi: 10.1177/1362361300004001005
   Google Scholar
• Howlin, P., J. Alcock, and C. Burkin. 2005. “An 8 Year Follow-up of a Specialist Supported Employment Service for High-Ability Adults with Autism or Asperger Syndrome.” Autism 9 (5): 533–549. doi: 10.1177/1362361305057871
   PubMed Web of Science ®Google Scholar
• Howlin, P., S. Goode, J. Hutton, and M. Rutter. 2004. “Adult Outcome for Children with Autism.” Journal of Child Psychology and Psychiatry 45 (2): 212–229. doi: 10.1111/j.1469-7610.2004.00215.x
   PubMed Web of Science ®Google Scholar
• Humphrey, N., and S. Lewis. 2008. “‘Make Me Normal’ the Views and Experiences of Pupils on the Autistic Spectrum in Mainstream Secondary Schools.” Autism 12 (1): 23–46. doi: 10.1177/1362361307085267
   PubMed Web of Science ®Google Scholar
• Jordan, R. 2005. “Autistic Spectrum Disorders.” In Special Teaching for Special Children? Pedagogies for Inclusion, edited by A. Lewis and B. Norwich, 110–122. Maidenhead: McGraw-Hill International.
   Google Scholar
• Kapp, S. K., K. Gillespie-Lynch, L. E. Sherman, and T. Hutman. 2013. “Deficit, Difference, or Both? Autism and Neurodiversity.” Developmental Psychology 49 (1): 59–71. doi: 10.1037/a0028353
   PubMed Web of Science ®Google Scholar
• Kasari, C., S. F. N. Freeman, N. Bauminger, and M. C. Alkin. 1999. “Parental Perspectives on Inclusion: Effects of Autism and Down Syndrome.” Journal of Autism and Developmental Disorders 29 (4): 297–305. doi: 10.1023/A:1022159302571
   PubMed Web of Science ®Google Scholar
• Lawson, W. 2008. Concepts of Normality. London: Jessica Kingsley Publishing.
   Google Scholar
• Levy, A., and A. Perry. 2011. “Outcomes in Adolescents and Adults with Autism: A Review of the Literature.” Research in Autism Spectrum Disorders 5 (4): 1271–1282. doi: 10.1016/j.rasd.2011.01.023
   Web of Science ®Google Scholar
• Lewis, A., and B. Norwich. eds. 2005. Special Teaching for Special Children?: Pedagogies for Inclusion. Maidenhead: McGraw-Hill International.
   Google Scholar
• Lindsay, G. 2007. “Educational Psychology and the Effectiveness of Inclusive Education/Mainstreaming.” British Journal of Educational Psychology 77 (1): 1–24. doi: 10.1348/000709906X156881
   PubMed Web of Science ®Google Scholar
• Molloy, H., and L. Vasil. 2002. “The Social Construction of Asperger Syndrome: The Pathologising of Difference?” Disability & Society 17 (6): 659–669. doi: 10.1080/0968759022000010434
   Web of Science ®Google Scholar
• Nusbaum, E. A. 2013. “Vulnerable to Exclusion: The Place for Segregated Education within Conceptions of Inclusion.” International Journal of Inclusive Education 17 (12): 1295–1311. doi: 10.1080/13603116.2013.826292
   Web of Science ®Google Scholar
• Office for National Statistics. 2014. “Large Increase in 20 to 34-year-olds Living with Parents Since 1996.” Accessed March 10, 2014. http://www.ons.gov.uk/ons/rel/family-demography/young-adults-living-with-parents/2013/sty-young-adults.html
   Google Scholar
• Özmen, A. 2013. Push for Action. London: The National Autistic Society. Accessed June 29, 2014. www.autism.org.uk
   Google Scholar
• Pallas, A. M. 1993. “Schooling in the Course of Human Lives: The Social Context of Education and the Transition to Adulthood in Industrial Society.” Review of Educational Research 63 (4): 409–447. doi: 10.3102/00346543063004409
   Web of Science ®Google Scholar
• Parsons, S., K. Guldberg, A. MacLeod, G. Jones, A. Prunty, and T. Balfe. 2009. International Review of the Literature of Evidence of Best Practice Provision in the Education of Persons with Autistic Spectrum Disorders. Ireland: National Council for Special Education. Accessed March 10, 2014. http://www.ncse.ie/uploads/1/2_NCSE_Autism.pdf
   Google Scholar
• Parsons, S., K. Guldberg, A. MacLeod, G. Jones, A. Prunty, and T. Balfe. 2011. “International Review of the Evidence on Best Practice in Educational Provision for Children on the Autism Spectrum.” European Journal of Special Needs Education 26 (1): 47–63. doi: 10.1080/08856257.2011.543532
   Google Scholar
• Pellicano, E., A. Dinsmore, and T. Charman. 2013. A Future Made Together: Shaping Autism Research in the UK. London: Centre for Research in Autism and Education (CRAE), Institute of Education, University of London.
   Google Scholar
• Pellicano, E., and M. Stears. 2011. “Bridging Autism, Science and Society: Moving Toward an Ethically Informed Approach to Autism Research.” Autism Research 4 (4): 1–12. doi: 10.1002/aur.201
   PubMed Web of Science ®Google Scholar
• Preece, D., and R. Jordan. 2010. “Obtaining the Views of Children and Young People with Autism Spectrum Disorders About Their Experience of Daily Life and Social Care Support.” British Journal of Learning Disabilities 38 (1): 10–20. doi: 10.1111/j.1468-3156.2009.00548.x
   Web of Science ®Google Scholar
• Ravet, J. 2011. “Inclusive/Exclusive? Contradictory Perspectives on Autism and Inclusion: The Case for an Integrative Position.” International Journal of Inclusive Education 15 (6): 667–682. doi: 10.1080/13603110903294347
   Web of Science ®Google Scholar
• Renty, J. O., and H. Roeyers. 2006. “Quality of Life in High-functioning Adults with Autism Spectrum Disorder the Predictive Value of Disability and Support Characteristics.” Autism 10 (5): 511–524. doi: 10.1177/1362361306066604
   PubMed Web of Science ®Google Scholar
• Robertson, C. 2001. “Autonomy and Identity: The Need for New Dialogues in Education and Welfare.” Support for Learning 16 (3): 122–127. doi: 10.1111/1467-9604.00203
   Google Scholar
• Robson, C. 2002. Real World Research. 2nd ed. Oxford: Blackwell.
   Google Scholar
• Sainsbury, C. 2000. Martian in the Playground. Bristol: Lucky Duck.
   Google Scholar
• Schalock, R. L. 2004. “The Concept of Quality of Life: What We Know and Do Not Know.” Journal of Intellectual Disability Research 48 (3): 203–216. doi: 10.1111/j.1365-2788.2003.00558.x
   PubMed Web of Science ®Google Scholar
• Sciutto, M., S. Richwine, J. Mentrikoski, and K. Niedzwiecki. 2012. “A Qualitative Analysis of the School Experiences of Students with Asperger Syndrome.” Focus on Autism and Other Developmental Disabilities 27 (3): 177–188. doi: 10.1177/1088357612450511
   Web of Science ®Google Scholar
• Seltzer, M. M., P. Shattuck, L. Abbeduto, and J. S. Greenberg. 2004. “Trajectory of Development in Adolescents and Adults with Autism.” Mental Retardation and Developmental Disabilities Research Reviews 10 (4): 234–247. doi: 10.1002/mrdd.20038
   PubMedGoogle Scholar
• Stendal, K., S. Balandin, and J. Molka-Danielsen. 2011. “Virtual Worlds: A New Opportunity for People with Lifelong Disability?” Journal of Intellectual and Developmental Disability 36 (1): 80–83.
   Google Scholar
• Tavernor, L., E. Barron, J. Rodgers, and H. McConachie. 2013. “Finding Out What Matters: Validity of Quality of Life Measurement in Young People with ASD.” Child: Care, Health and Development 39 (4): 592–601.
   PubMed Web of Science ®Google Scholar
• Taylor-Powell, E., and M. Renner. 2003. Analyzing Qualitative Data (G3658–12). Madison, WI: Cooperative Extension Publishing. Accessed March 26, 2014. http://learningstore.uwex.edu
   Google Scholar
• Thomas, G. 1997. “Inclusive Schools for an Inclusive Society.” British Journal of Special Education 24 (3): 103–107. doi: 10.1111/1467-8527.00024
   Google Scholar
• VanBergeijk, E., A. Klin, and F. Volkmar. 2008. “Supporting More Able Students on the Autism Spectrum: College and Beyond.” Journal of Autism and Developmental Disorders 38 (7): 1359–1370. doi: 10.1007/s10803-007-0524-8
   PubMed Web of Science ®Google Scholar
• Whitaker, P. 2007. “Provision for Youngsters with Autistic Spectrum Disorders in Mainstream Schools: What Parents Say – and What Parents Want.” British Journal of Special Education 34 (3): 170–178. doi: 10.1111/j.1467-8578.2007.00473.x
   Google Scholar
• White-Koning, M., H. Grandjean, A. Colver, and C. Arnaud. 2008. “Parent and Professional Reports of the Quality of Life of Children with Cerebral Palsy and Associated Intellectual Impairment.” Developmental Medicine and Child Neurology 50 (8): 618–624. doi: 10.1111/j.1469-8749.2008.03026.x
   PubMed Web of Science ®Google Scholar
• Wittemeyer, K., T. Charman, J. Cusack, K. Guldberg, R. Hastings, P. Howlin, N. MacNab, S. Parsons, E. Pellicano, and V. Slonims. 2011. “Educational Provision and Outcomes for People on the Autism Spectrum: Full Technical Report.” Autism Education Trust. http://www.autismeducationtrust.org.uk/outcomes/
   Google Scholar
• Wolbers, M. H. 2007. “Patterns of Labour Market Entry – A Comparative Perspective on School-to-work Transitions in 11 European Countries.” Acta sociologica 50 (3): 189–210. doi: 10.1177/0001699307080924
   Web of Science ®Google Scholar