Uncertainty is a major theme of The Politics of Autism. In the concluding section, I write:
A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.
At Autism, Mary J Baker-Ericzén, Lauren Brookman-Frazee, and Edward S Brodkin have an editorial titled "Accelerating Research on Treatment and Services for Transition Age Youth and Adults on the Autism Spectrum."
Research on transition age youth and adults with autism is in its infancy. Less than 20% of all published autism research literature and about 2% of all autism research funding in the United States target these populations, and there are large deficits in related services (Interagency Autism Coordinating Committee, 2016; Government Accountability Office (GAO), 2015). Despite these challenges, there are many opportunities to capitalize on lessons learned from previous research in related areas. Opportunities for research on adults with autism will reach a new height over this next decade as the first large cohorts of children diagnosed with autism have now reached adulthood (Bishop-Fitzpatrick et al., 2017; Gerhardt and Lainer, 2011). The time is ripe for our research community to conduct effective and efficient research and swiftly translate research findings into services to improve the lives of this growing population.
Two large bodies of literature can guide investigators: (1) research on children with autism and (2) research with adults with other neurodevelopmental conditions, such as schizophrenia. Three key lessons learned from this literature could accelerate research for adults with autism. Our hope is that this editorial and the original research published in this special issue will provide examples and guidance in this area.
Lesson 1: Apply prevention and early intervention theories
One important lesson from previous research is that access to intervention services is vital to improved outcomes (Bryson et al., 2003; Hume et al., 2005). Our service system for children is developed to the point that some children receive early intervention as young as infancy. Adults with autism, on the other hand, find it extremely difficult to access appropriate services (GAO, 2017) and available services often dramatically decrease as they transition to adulthood. This extreme shift is often referred to as the “service cliff” (Roux et al., 2015). Existing services for adults frequently only enroll those with more significant needs such as intellectual disability, psychiatric disorders, or medical problems (Lorenc et al., 2017). Individuals with autism spend significantly more time of life within the adult service system compared to the child system. So why is there such a large discrepancy in research, interventions, and services across the life span?
Child services have grown due to a recognition of the importance of early intervention, which is derived from the theories of neurodevelopment and neuroplasticity.
Lesson 2: Focus on the multiple service systems that could support adults with autism
A second lesson is to attend to multiple service systems, interagency collaborations, and barriers to accessing care within and across these systems. Like children, adults make use of multiple service systems: developmental disabilities, health, vocational, educational, independent living, social services, transportation, and mental health. Decades were spent on creating systems of care for children and establishing models for interagency collaboration. Adult service systems can apply similar methods.
Lesson 3: Attend to outcomes and measurement tools
Another lesson from previous research is the importance of defining outcomes and developing psychometrically strong measurement tools. One recent review of interventions for adults with autism, including those targeting various life outcomes (employment, social relationships, daily living, quality of life), found that in the 20,584 articles screened, only 32 were studies of interventions; more than 50 outcome measurement tools were used among the studies with very little consistency across measures (Lorenc et al., 2017). The authors reported that meta-analyses could not be conducted due to the heterogeneity of intervention content, outcomes, and outcome measures. Even more concerning was that few studies used validated measurement tools (Lorenc et al., 2017). This same challenge of lack of consistency across outcomes and measurement tools has been reported in numerous review articles. The need for psychometrically sound treatment outcome measures has been identified as a key priority for adult autism research (Bolte and Diehl, 2013; McConachie et al., 2015).
Aarons, GA, Hurlburt, M, Horwitz, SM (2011) Advancing a conceptual model of evidence-based practice implementation in public service sectors. Administration and Policy in Mental Health 38(1): 4–23. Google Scholar, Crossref, Medline
Baker-Ericzén, M, Hurlburt, M, Brookman-Frazee, L (2010) Comparing child, parent and family characteristics in usual care and EST research samples for children with disruptive behavior disorders. Journal of Emotional and Behavioral Disorders 18: 82–99. Google Scholar, Link
Barreira, P, Espey, B, Fishbein, R (2000) Linking substance abuse and serious mental illness service delivery systems: initiating a statewide collaborative. The Journal of Behavioral Health Services & Research 27(1): 107–113. Google Scholar, Crossref, Medline
Bell, MD, Zito, W, Greig, T (2008) Neurocognitive enhancement therapy with vocational services: work outcomes at two-year follow-up. Schizophrenia Research 105(1–3): 18–29. Google Scholar, Crossref, Medline
Bishop-Fitzpatrick, L, DaWalt, LS, Greenberg, JS (2017) Participation in recreational activities buffers the impact of perceived stress on quality of life for adults with autism spectrum disorders. Autism Research 10: 973–982. Google Scholar, Crossref, Medline
Bishop-Fitzpatrick, L, Hong, J, Smith, LE (2016) Characterizing objective quality of life and normative outcomes in adults with autism spectrum disorder: an exploratory latent class analysis. Journal of Autism and Developmental Disorders 46(8): 2707–2279. Google Scholar, Crossref, Medline
Bolte, EE, Diehl, JJ (2013) Measurement tools and target symptoms/skills used to assess treatment response for individuals with autism spectrum disorders. Journal of Autism and Developmental Disorders 43(11): 2491–2501. Google Scholar, Crossref, Medline
Bora, E (2017) A neurodevelopment and neuroplasticity-based framework for early intervention in psychotic disorders. Psychological Medicine 11: 1–9. Google Scholar
Brookman-Frazee, L, Stahmer, A, Lewis, K (2012) Building a research-community collaborative to improve community care for infants and toddlers at-risk for autism spectrum disorders. Journal of Community Psychology 40(6): 715–734. Google Scholar, Crossref, Medline
Bryson, SE, Rogers, SJ, Fombonne, E (2003) Autism spectrum disorders: early detection, intervention, education, and psychopharmacological management. The Canadian Journal of Psychiatry 488(8): 506–516. Google Scholar, Link
Buonocore, M, Spangaro, M, Bechi, M (2017) Integrated cognitive remediation and standard rehabilitation therapy in patients of schizophrenia: persistence after 5 years. Schizophrenia Research. Epub ahead of print 22 May 2017. DOI: 10.1016/j.schres.2017.05.022. Google Scholar, Crossref, Medline
Campos, C, Santos, S, Gagen, E (2016) Neuroplastic changes following social cognition training in schizophrenia: a systematic review. Neuropsychological Review 263(3): 310–328. Google Scholar, Crossref
Croen, LA, Zerbo, O, Qian, Y (2015) The health status of adults on the autism spectrum. Autism 19(7): 814–823. Google Scholar, Link
Dern, S, Sappok, T (2014) EPA-0361 – Barriers to health care for people on the autism spectrum across all levels of intellectual ability. European Psychiatry 29: (1)1. Google Scholar, Crossref, Medline
Eack, S, Greenwald, D, Hogarty, S (2009) Cognitive enhancement therapy for early-course schizophrenia: effects of a two-year randomized controlled trial. Psychiatric Services 60(11): 1468–1476. Google Scholar, Crossref, Medline
Eack, SM (2017) Promoting long-term functional improvement after cognitive remediation in schizophrenia. Schizophrenia Research. Epub ahead of print 30 July 2017. DOI: 10.1016/j.schres.2017.07.043. Google Scholar, Crossref
Garland, AF, Haine-Schlagel, R, Brookman-Frazee, L (2013) Improving community-based mental health care for children: translating knowledge into action. Administration and Policy in Mental Health and Mental Health Services Research 40: 6–22. Google Scholar, Crossref, Medline
Gerhardt, PF, Lainer, I (2011) Addressing the needs of adolescents and adults with autism: a crisis on the horizon. Journal of Contemporary Psychotherapy 411(1): 37–45. Google Scholar, Crossref
Government Accountability Office (GAO) (2012) Students with disabilities: better federal coordination could lessen challenges in the transition from high school (GAO-12-594). Available at: http://www.gao.gov/products/GAO-12-594 (accessed 2 December 2014). Google Scholar
Government Accountability Office (GAO) (2015) Federal Autism Research: Updated Information on Funding From Fiscal Years 2008 through 2012 (GAO-15-583R). Washington, DC: GAO. Google Scholar
Government Accountability Office (GAO) (2017) Youth with Autism: Roundtable Views of Services Needed During the Transition into Adulthood (GAO-17-109). Washington, DC: GAO. Google Scholar
Hirvikoski, T, Mittendorfer-Rutz, E, Boman, M (2015) Premature mortality in autism spectrum disorder. The British Journal of Psychiatry 208: 232–238. Google Scholar, Crossref, Medline
Howlin, P, Magiati, I (2017) Autism spectrum disorder: outcomes in adulthood. Current Opinion in Psychiatry 302(2): 69–76. Google Scholar, Crossref
Howlin, P, Savage, S, Moss, P (2014) Cognitive and language skills in adults with autism: a 40-year follow-up. Journal of Child Psychology and Psychiatry 551(1): 49–58. Google Scholar, Crossref
Hume, K, Bellini, S, Pratt, C (2005) The usage and perceived outcomes of early intervention and early childhood programs for young children with autism spectrum disorder. Topics in Early Childhood Special Education 254(4): 195–207. Google Scholar, Link
Interagency Autism Coordinating Committee (IACC) (2016) 2015 IACC Summary of Advances in Autism Spectrum Disorder Research. US Department of Health and Human Services Interagency Autism Coordinating Committee. Available at: https://iacc.hhts.gov/publications/summary-of-advances/2015/ (accessed 20 December 2016). Google Scholar
Lee, H, Dvorak, D, Kao, H-Y (2012) Early cognitive experience prevents adult deficits in a neurodevelopmental schizophrenia model. Neuron 754(4): 714–724. Google Scholar, Crossref
Locke, J, Beidas, RS, Marcus, S (2016) A mixed methods study of individual and organizational factors that affect implementation of interventions for children with autism in public schools. Implementation Science 11: 135. Google Scholar, Crossref, Medline
Lorenc, T, Rodgers, M, Marshall, D (2017) Support for adults with autism spectrum disorder without intellectual impairment: systematic review. Autism. Epub ahead of print 7 July 2017. DOI: 10.1177/1362361317698939. Google Scholar, Link
McConachie, H, Parr, JR, Glod, M (2015) Systematic review of tools to measure outcomes for young children with autism spectrum disorder. Health Technology Assessment 19: 19410. Google Scholar, Crossref
Moss, P, Howlin, P, Savage, S (2015) Self and informant reports of mental health difficulties among adults with autism findings from a long-term follow-up study. Autism 19(7): 832–841. Google Scholar, Link
Oades, L, Deane, F, Crowe, T (2005) Collaborative recovery: an integrative model for working with individuals who experience chronic and recurring mental illness. Australasian Psychiatry 13(3): 279–284. Google Scholar, Abstract
Proctor, E, Silmere, H, Raghavan, R (2011) Outcomes for implementation research: conceptual distinctions, measurement challenges, and research agenda. Administration and Policy in Mental Health 38(2): 65–76. Google Scholar, Crossref, Medline
Ramsay, IS, Macdonald, AW (2015) Correlates of cognitive remediation in schizophrenia: activation likelihood analysis shows preliminary evidence of neural target engagement. Schizophrenia Bulletin 41(6): 1276–1284. Google Scholar, Crossref, Medline
Roux, AM, Shattuck, PT, Rast, JE (2015) National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University. Google Scholar
Saqr, Y Addressing medical needs of adolescents and adults with autism spectrum disorders in a primary care setting. Autism (this issue). DOI: 10.1177/1362361317709970. Google Scholar, Link
Schendel, DE, Overgaard, M, Christensen, J (2016) Association of Psychiatric and Neurologic Comorbidity with mortality among persons with autism spectrum disorder in a Danish population. Journal of American Medical Association of Pediatrics 170(3): 243–250. Google Scholar, Medline
Shattuck, PT, Narendorf, SC, Cooper, B (2012) Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics 129: 1042–1049. Google Scholar, Crossref, Medline
Sosnowy, C, Silverman, C, Shattuck, P. (2017) Parents’ and young adults’ perspectives on transition outcomes for young adults with autism. Autism (this issue). DOI: 10.1177/1362361317699585. Google Scholar, Link
Valkanova, V, Rodriquez, RE, Ebmeir, KP (2014) Mind over matter: what do we know about neuroplasticity in adults? International Psychogeriatrics 266(6): 891–909. Google Scholar, Crossref
Woltmann, E, Grogan-Kaylor, A, Perron, B (2012) Comparative effectiveness of collaborative chronic care models for mental health conditions across primary, specialty, and behavioral health care settings: systematic review and meta-analysis. American Journal of Psychiatry 169(8): 790–804. Google Scholar, Crossref, Medline
Wood, J, McLeod, B, Klebanoff, S (2014) Towards the implementation of evidence-based interventions for youth with autism spectrum disorders in schools and community agencies. Behavior Therapy 46: 83–95. Google Scholar, Crossref, Medline