Although there has been a dramatic increase in the research and clinical studies related to children and adolescents, there is a paucity of information regarding more capable adults on the autism spectrum. It is only recently that psychologists have begun to appreciate the complex challenges faced by a “lost generation” of adults with autism spectrum disorders. (ASD). Even though the core symptoms of ASD (impairments in communication and social interaction and restricted/repetitive behaviors and interests) may improve overtime with intervention for many individuals, some degree of impairment typically remains throughout the lifespan. Consequently, the focus of intervention/treatment must shift from remediating core deficits in childhood to promoting adaptive behaviors that can facilitate and enhance ultimate functional independence and quality of life in adulthood. This includes new developmental challenges such as independent living, vocational engagement, post-secondary education, and family support.
Decision-making is an important part of almost every aspect of life. However, several autobiographical accounts (e.g., Temple Grandin) suggest that making decisions can present significant problems for individuals with ASD. Likewise, a small number of experimental studies have suggested differences between the decision-making of adults with ASD and their neurotypical counterparts. Despite autobiographical accounts and limited studies, the extent to which, in everyday life, people with ASD experience difficulties with decision-making is largely unknown.
A recent study published in the journal Autism sought to extend this important area of research by comparing the “real-life” decision-making experiences of adults with and without ASD. The researchers hypothesized that compared with a neurotypical group, participants with ASD would report: (a) more frequent experiences of problems during decision-making (e.g. feeling exhausted), (b) greater difficulty with particular features of decisions (e.g. decisions that need to be made quickly), and (c) greater reliance on rational, avoidant, and dependent styles of decision-making. In addition, it was expected that participants with ASD would report interference from their condition when making decisions.
The participants were 38 adults with ASD and 40 neurotypical comparison adults (with no family history of ASD), aged 16 to 65 years. The groups were matched for age, gender and verbal IQ. All participants completed a novel questionnaire to evaluate their decision-making experiences. The questionnaire asked participants to rate: (a) the frequency with which particular problems in decision-making were experienced; (b) the extent to which they perceived difficulties in relation to particular features of decisions; and finally, (c) the extent to which participants with ASD believed that their condition enhanced or interfered with their own decision-making. Ratings of the frequency of 12 potential problems in decision-making were indicated on a four-point Likert-type scale (from ‘never’ to ‘often’). Participants also completed the General Decision Making Style Inventory (GDMS), a 25-item questionnaire probing reliance on five, non- mutually exclusive, styles of decision-making (rational, intuitive, dependent, avoidant, and spontaneous). Levels of anxiety and depression were assessed using the well- established Hospital Anxiety and Depression Scale (HADS).
The results indicated that compared with their neurotypical peers, the participants with ASD more frequently reported difficulties in decision making. Decisions that needed to be made quickly, or involved a change of routine, or talking to others, were experienced as particularly difficult, and the process of decision-making was reported to be exhausting, overwhelming, and anxiety-provoking. The participants with ASD reported significantly higher levels of anxiety and depression and were more likely to believe that their condition interfered with rather than enhanced the decision-making process. Not surprisingly, the participants with ASD were also more likely to report that they avoided decision-making.
Conclusion and Recommendations
The overall findings of the study suggest that, compared with neurotypical individuals, individuals with ASD experience greater difficulty with decision-making. Decision-making in ASD was associated with anxiety, exhaustion, problems engaging in the process, and a tendency to avoid decision-making. These findings are consistent with previous autobiographical accounts, known features of the condition, and previous studies of decision-making in ASD. In addition, the difficulties reported by the participants with ASD may be exacerbated by higher levels of anxiety and depression. The researchers found that ratings of perceived frequency of interference from ASD increased proportionally with levels of anxiety and depression. Despite limitations of the study (e.g., self-reports), the results are consistent with suggestions from the literature relating to decision-making for people with ASD. Importantly, they also have some practical implications for supporting more capable adults with ASD. For example, it may be useful to: (a) provide additional time to reach a choice, (b) minimize irrelevant information, (c) present closed questions, (d) offer encouragement and reassurance, and (e) address general issues around anxiety. Understanding how adults with ASD experience decision-making is especially relevant for family members and professionals who are involved in providing support to help these individuals achieve greater self understanding, self-advocacy and improved decision-making in lifespan activities such as employment and personal relationships.
Luke, L., Clare, I. C. H., Ring, H., Redley, M., Watson, P. (2012). Decision-making difficulties experienced by adults with autism spectrum conditions, Autism, 16(6), 612–621.
Wilkinson, L. A. (2008). Adults with Asperger syndrome: A childhood disorder grows up.The Psychologist, 21, 764-770.
Wilkinson, L. A. (2007, May). Adults with Asperger syndrome: A lost generation? Autism Spectrum Quarterly.
Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers.