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Outcomes for Adults with Autism Spectrum Disorder and Intellectual Disability

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Abstract

Autism spectrum disorder (ASD) and intellectual disability commonly occur together. As the diagnostic criteria for ASD have widened, the proportion of people with ‘high-functioning’ ASD has increased, and current estimates of the prevalence of intellectual disability among those with ASD are much lower than they were in the past. On the other hand, improvements in recognition and assessment have led to an increase in the proportion of people with intellectual disability who have a diagnosis of ASD. It is now thought that individuals with ‘low-functioning’ ASD (i.e. adults with ASD and intellectual disability) comprise around 50 % of the ASD population. This chapter is about adults with ASD and intellectual disability. The focus is on social functioning outcomes rather than health or psychopathological issues which are covered by other chapters in this book. The chapter begins with an evaluation of the methods that have been used to measure outcomes in adults with ASD and intellectual disability. This is followed by a review of the evidence on outcomes for this group. Finally, we discuss the clinical and research implications of this evidence.

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References

  • Aman MG, Singh NN, Stewart AW, Field CJ (1985) The aberrant behavior checklist: a behavior rating scale for the assessment of treatment effects. Am J Ment Defic 89:485–491

    CAS  PubMed  Google Scholar 

  • Anderson DK, Liang JW, Lord C (2014) Predicting young adult outcome among more and less cognitively able individuals with autism spectrum disorders. J Child Psychol Psychiatry 55:485–494

    Article  PubMed  Google Scholar 

  • Autism Act 2009. Autism Act UK. In: Hm Government (ed).

    Google Scholar 

  • Barnard, J., Harvey, V., Potter, D. & Prior, A. 2001. Ignored or ineligible? The reality for adults with autism spectrum disorders. The National Autistic Society, London

    Google Scholar 

  • Beadle-Brown J, Murphy G, Diterlizzi M (2009) Quality of life for the Camberwell Cohort. J Appl Res Intellect Disabil 22:380–390

    Article  Google Scholar 

  • Billstedt E, Gillberg C, Gillberg C (2005) Autism after adolescence: population-based 13- to 22-year follow-up study of 120 individuals with autism diagnosed in childhood. J Autism Dev Disord 35:351–360

    Article  PubMed  Google Scholar 

  • Billstedt E, Gillberg IC, Gillberg C (2011) Aspects of quality of life in adults diagnosed with autism in childhood: a population-based study. Autism 15:7–20

    Article  PubMed  Google Scholar 

  • Bradley E, Caldwell P, Underwood L (2014) Autism Spectrum Disorder. In: Mccarthy J, Tsakanikos E (eds) Handbook of psychopathology in intellectual disability. Springer, New York

    Google Scholar 

  • Cederlund M, Hagberg B, Billstedt E, Gillberg IC, Gillberg C (2008) Asperger syndrome and autism: a comparative longitudinal follow-up study more than 5 years after original diagnosis. J Autism Dev Disord 38:72–85

    Article  PubMed  Google Scholar 

  • Congress, U.S. (2006) Combating Autism Act Pub. Law No. 109–416. In: Congress, U.S. (ed)

    Google Scholar 

  • Department of Health (2010) ‘Fulfilling and rewarding lives’ The strategy for adults with autism in England (2010). Department of Health, London

    Google Scholar 

  • Eaves LC, Ho HH (2007) Young adult outcome of autism spectrum disorders. J Autism Dev Disord 38:739–747

    Article  PubMed  Google Scholar 

  • Elison S, Stinton C, Howlin P (2010) Health and social outcomes in adults with Williams syndrome: findings from cross-sectional and longitudinal cohorts. Res Dev Disabil 31:587–599

    Article  PubMed  Google Scholar 

  • Engstrom I, Ekstrom L, Emilsson B (2003) Psychosocial Functioning in a Group of Swedish Adults with Asperger Syndrome or High- Functioning Autism. Autism 7:99–110

    CAS  PubMed  Google Scholar 

  • Esbensen AJ, Bishop S, Seltzer MM, Greenberg JS, Taylor JL (2010) Comparisons between individuals with autism spectrum disorders and individuals with Down Syndrome in adulthood. Am J Intellect Dev Disabil 115:277

    Article  PubMed  PubMed Central  Google Scholar 

  • Farley MA, Mcmahon WM, Fombonne E, Jenson WR, Miller J, Gardner M, Block H, Pingree CB, Ritvo ER, Ritvo RA, Coon H (2009) Twenty-year outcome for individuals with autism and average or near-average cognitive abilities. Autism Res 2:109–118

    Article  PubMed  Google Scholar 

  • Fein D, Barton M, Eigsti IM, Kelley E, Naigles L, Schultz RT, Stevens M, Helt M, Orinstein A, Rosenthal M, Troyb E, Tyson K (2013) Optimal outcome in individuals with a history of autism. J Child Psychol Psychiatry 54:195–205

    Article  PubMed  PubMed Central  Google Scholar 

  • Felce D, Perry J, Lowe K, Jones E (2011) The impact of autism or severe challenging behaviour on lifestyle outcome in community housing. J Appl Res Intellect Disabil 24:95–104

    Article  Google Scholar 

  • Findon J, Cadman T, Stewart CS, Woodhouse E, Eklund H, Hayward H, De Le Harpe Golden D, Chaplin E, Glaser K, Simonoff E, Murphy D, Bolton PF, Mcewen FS (2016) Screening for co-occurring conditions in adults with autism spectrum disorder using the strengths and difficulties questionnaire: a pilot study. Autism Res 9:1353–1363

    Google Scholar 

  • Gillespie-Lynch K, Sepeta L, Wang Y, Marshall S, Gomez L, Sigman M, Hutman T (2012) Early childhood predictors of the social competence of adults with autism. J Autism Dev Disord 42:161–174

    Article  PubMed  Google Scholar 

  • Gotham K, Marvin AR, Taylor JL, Warren Z, Anderson CM, Law PA, Law JK, Lipkin PH (2015) Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data. Autism 19:794–804

    Article  PubMed  PubMed Central  Google Scholar 

  • Green J, Gilchrist A, Burton D, Cox A (2000) Social and psychiatric functioning in adolescents with Asperger syndrome compared with conduct disorder. J Autism Dev Disord 30:279–293

    Article  CAS  PubMed  Google Scholar 

  • Henninger NA, Taylor JL (2013) Outcomes in adults with autism spectrum disorders: a historical perspective. Autism 17:103–116

    Article  PubMed  Google Scholar 

  • Holmes N, Shah A, Wing L (1982) The Disability Assessment Schedule: a brief screening device for use with the mentally retarded. Psychol Med 12:879–890

    Article  CAS  PubMed  Google Scholar 

  • Howlin P (2000) Outcome in Adult Life for more Able Individuals with Autism or Asperger Syndrome. Autism 4:63–83

    Article  Google Scholar 

  • Howlin P, Mawhood L, Rutter M (2000) Autism and developmental receptive language disorder - follow-up comparison in early adult life. II: social, behavioural, and psychiatric outcomes. Journal of Child Psychology and Psychiatry 41:561–578

    Article  CAS  PubMed  Google Scholar 

  • Howlin P, Goode S, Hutton J, Rutter M (2004) Adult outcome for children with autism. Journal of Child Psychology and Psychiatry 45:212–229

    Article  PubMed  Google Scholar 

  • Howlin P, Moss P, Savage S, Rutter M (2013) Social outcomes in mid- to later adulthood among individuals diagnosed with autism and average nonverbal IQ as children. J Am Acad Child Adolesc Psychiatry 52:572–581 e1

    Article  PubMed  Google Scholar 

  • Howlin P, Savage S, Moss P, Tempier A, Rutter M (2014) Cognitive and language skills in adults with autism: a 40-year follow-up. J Child Psychol Psychiatry 55:49–58

    Article  PubMed  Google Scholar 

  • Howlin P, Arciuli J, Begeer S, Brock J, Clarke K, Costley D, Di Rita P, Falkmer T, Glozier N, Gray K, Guastella A, Horstead S, Rice L, Stancliffe RJ, West S, Yam C, Einfeld S (2015) Research on adults with autism spectrum disorder: Roundtable report. J Intellect Dev Disabil 40:388–393

    Article  Google Scholar 

  • Kanne SM, Gerber AJ, Quirmbach LM, Sparrow SS, Cicchetti DV, Saulnier CA (2011) The role of adaptive behavior in autism spectrum disorders: implications for functional outcome. J Autism Dev Disord 41:1007–1018

    Article  PubMed  Google Scholar 

  • Kanner L (1971) Follow-up study of eleven autistic children originally reported in 1943. J Autism Child Schizophr 1:119–145

    Article  CAS  PubMed  Google Scholar 

  • Kirby AV (2016) Parent expectations mediate outcomes for young adults with autism spectrum disorder. J Autism Dev Disord 46:1643–1655

    Article  PubMed  Google Scholar 

  • Levy A, Perry A (2011) Outcomes in adolescents and adults with autism: a review of the literature. Research in Autism Spectrum Disorders 5:1271–1282

    Article  Google Scholar 

  • Lockyer L, Rutter M (1969) A five- to fifteen-year follow-up study of infantile psychosis. Br J Psychiatry 115:865–882

    Article  CAS  PubMed  Google Scholar 

  • Lotter V (1974) Factors related to outcome in autistic children. J Autism Child Schizophr 4:263–277

    Article  CAS  PubMed  Google Scholar 

  • Magiati I, Tay XW, Howlin P (2014) Cognitive, language, social and behavioural outcomes in adults with autism spectrum disorders: a systematic review of longitudinal follow-up studies in adulthood. Clin Psychol Rev 34:73–86

    Article  PubMed  Google Scholar 

  • Marriage S, Wolverton A, Marriage K (2009) Autism Spectrum Disorder grown up: a chart review of adult functioning. J Can Acad Child Adolesc Psychiatry 18:322–328

    PubMed  PubMed Central  Google Scholar 

  • Matson JL, Dempsey T, Fodstad JC (2009) The effect of Autism Spectrum Disorders on adaptive independent living skills in adults with severe intellectual disability. Res Dev Disabil 30:1203–1211

    Article  PubMed  Google Scholar 

  • Mawhood L, Howlin P, Rutter M (2000) Autism and developmental receptive language disorder – a comparative follow-up in early adult life I: cognitive and language outcomes. J Child Psychol Psychiatry 41:547–559

    Article  CAS  PubMed  Google Scholar 

  • Mccarthy J, Chaplin E, Underwood L (2015) An English perspective on policy for adults with autism. Advances in Autism 1:61–65

    Article  Google Scholar 

  • National Audit Office 2009. Supporting people with autism through adulthood. Report by the Comptroller and Auditor General. HC 556 Session 2008–2009. National Audit Office, London

    Google Scholar 

  • Nice (2012) Autism: recognition, referral, diagnosis and management of adults on the autism spectrum, National Institute for Health and Clinical Excellence, London

    Google Scholar 

  • O’Brien G (2001) Adult outcome of childhood learning disability. Dev Med Child Neurol 43:634–638

    Google Scholar 

  • Prince M (2003) Measurement in psychiatry. In: Prince M, Stewart S, Ford T, Hotopf M (eds) Practical psychiatric epidemiology. Oxford University Press, Oxford

    Chapter  Google Scholar 

  • Renty JO, Roeyers H (2006) Quality of life in high-functioning adults with autism spectrum disorder: the predictive value of disability and support characteristics. Autism 10:511–524

    Article  CAS  PubMed  Google Scholar 

  • Rutter M, Greenfeld D, Lockyer L (1967) A five to fifteen year follow-up study of infantile psychosis. Br J Psychiatry 113:1183–1199

    Article  CAS  PubMed  Google Scholar 

  • Saldana D, Alvarez RM, Lobaton S, Lopez AM, Moreno M, Rojano M (2009) Objective and subjective quality of life in adults with autism spectrum disorders in southern Spain. Autism 13:303–316

    Article  PubMed  Google Scholar 

  • Sappok T, Heinrich M, Underwood L (2015) Screening tools for autism spectrum disorders. Adv Autism 1:12–29

    Article  Google Scholar 

  • Schalock RL, Brown I, Brown R, Cummins RA, Felce D, Matikka L, Keith KD, Parmenter T (2002) Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: report of an international panel of experts. Ment Retard 40:457–470

    Article  PubMed  Google Scholar 

  • Stewart R (2003) Inference 1: chance, bias, and confounding. In: Prince M, Stewart S, Ford T, Hotopf M (eds) Practical psychiatric epidemiology. Oxford University Press, Oxford

    Google Scholar 

  • Taylor LJ (2016) Psychopharmacologic intervention for adults with autism spectrum disorder: a systematic literature review. Res Autism Spectr Disord 25:58–75

    Article  Google Scholar 

  • Tobin MC, Drager KDR, Richardson LF (2014) A systematic review of social participation for adults with autism spectrum disorders: support, social functioning, and quality of life. RASD 8:214–229

    Google Scholar 

  • Totsika V, Felce D, Kerr M, Hastings RP (2010) Behavior problems, psychiatric symptoms, and quality of life for older adults with intellectual disability with and without autism. J Autism Dev Disord 40:1171–1178

    Article  PubMed  Google Scholar 

  • Underwood L, Mccarthy J, Tsakanikos E, Howlin P, Bouras N, Craig TJ (2012) Health and social functioning of adults with intellectual disability and autism. J Policy Pract Intellect Disabil 9:147–150

    Article  Google Scholar 

  • Underwood L, McCarthy J, Tsakanikos E (2010) Mental health of adults with autism spectrum disorders and intellectual disability. Current Opinion in Psychiatry 23(5):421–426

    Google Scholar 

  • Underwood L, McCarthy J, Tsakanikos E (2011) Assessment of Co-morbid Psychopathology. In: Matson JLL, Sturmey P, eds. International Handbook of Autism and Pervasive Developmental Disorders. New York: Springer 287–293

    Google Scholar 

  • Van Dooren K, Mcpherson L, Lennox N (2016) Mapping the needs of adults with autism and co-morbid intellectual disability. Curr Dev Disord Rep 3:82–89

    Article  Google Scholar 

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Correspondence to Lisa Underwood .

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Underwood, L., McCarthy, J., Chaplin, E. (2017). Outcomes for Adults with Autism Spectrum Disorder and Intellectual Disability. In: Barahona Corrêa, B., van der Gaag, RJ. (eds) Autism Spectrum Disorders in Adults. Springer, Cham. https://doi.org/10.1007/978-3-319-42713-3_4

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  • DOI: https://doi.org/10.1007/978-3-319-42713-3_4

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