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.
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.
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).
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