Anxiety and Decision-Making in Autistic Adults

Anxiety and Decision-Making in Autistic Adults

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 disorder (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 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 be stressful and anxiety-provoking for many autistic adults. Likewise, a small number of studies have suggested differences between the decision-making experiences of adults on the spectrum and their neurotypical peers. Despite autobiographical accounts and limited studies, the extent to which, in everyday life, autistic individuals experience difficulties with decision-making is largely unknown.  

Research 

A 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 autism spectrum disorder (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).

Results

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 Implications

The overall findings of the study suggest that, compared with neurotypical individuals, autistic individuals 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 autism. 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 individuals with ASD. 

There are also some practical implications for improving the decision-making process for autistic adults. For example, it may be helpful 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. Unfortunately, expecting to make the perfect decision, postponing and second-guessing a choice, all leads to more anxiety. Strategies derived from cognitive-behavioral therapy (CBT) might be helpful in coping with indecisiveness and perfectionism by focusing on accepting life’s unpredictability and changing behavior to more effectively work toward a goal. This includes examining several sides of an issue, and creatively generating options for action, all in the effort to engage in more thoughtful, realistic, and productive decision-making. Understanding how autistic adults experience decision-making is essential for both family members and professionals in helping the individual achieve greater self-understanding, self-advocacy and improved decision-making in lifespan activities such as employment and personal relationships.

References

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. (2015). Overcoming anxiety and depression on the autism spectrum: A self-help guide using CBT. London and Philadelphia: Jessica Kingsley Publishers.
 
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, is a licensed and nationally certified school psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning books, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT. He is also editor of a text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).

Best Book Awards - A Best Practice Guide to Assessment & Intervention for Autism Spectrum Disorder in Schools

A Best Practice Guide to Assessment & Intervention for Autism Spectrum Disorder in Schools (2nd Edition) was selected as an Award-Winning Finalist in the "Education/Academic" category of the 2017 Best Book Awards. Fully updated to reflect current assessment tools, procedures and research, this award-winning book provides a practical and scientifically-based approach to identifying, assessing, and treating children and adolescents with an Autism Spectrum Disorder (ASD) in school settings. Integrating current research evidence with theory and best practice, each chapter features a consolidated and integrative description of best practice assessment and intervention approaches for children and youth with ASD. It brings the topics of assessment and intervention together in a single authoritative resource guide consistent with recent advances in evidence-based practice.  Illustrative case examples, glossary of terms, and helpful checklists and forms make this the definitive resource for identifying and implementing interventions for school-age children and youth with ASD.

This Guide is intended to meet the needs of school-based professionals such as school psychologists, counselors, speech/language pathologists, occupational therapists, counselors, social workers, administrators, and both general and special education teachers. Parents, advocates, and community-based professionals will also find this guide a valuable and informative resource.

👉 Click here to read a preview of A Best Practice Guide

                                          

Editorial Reviews  

“It is rare that one book can pack so many resources and easy to digest information into a single volume!  Families, school personnel, and professionals all need the extensive, and up-to-date tips, guides, and ‘must-knows’ provided here. It’s obvious the author is both a seasoned researcher and practitioner – a winning combination.” — Dr. Debra Moore, psychologist and co-author with Dr. Temple Grandin, of The Loving Push: How Parents & Professionals Can Help Spectrum Kids Become Successful Adult 

“Dr Wilkinson has done it again. This updated and scholarly Second Edition reflects important recent changes regarding diagnosis and services for students with Autism Spectrum Disorder. With its numerous best-practice suggestions, it is a must-read for school psychologists, school social workers, and those who teach in general and special education.” — Dr Steven Landau, Professor of School Psychology in the Department of Psychology, Illinois State University 

“This book is an essential resource for every educator that works with students with ASD! The easy-to-read format is complete with up to date research on evidence-based practices for this population, sample observation and assessment worksheets and case studies that allow the reader to apply the information presented.” — Gena P. Barnhill, PhD, NCSP, BCBA-D, LBA, Director of Special Education Programs at Lynchburg College, Lynchburg, VA  

Availability

A Best practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition) is available from Jessica Kingsley Publishers, Amazon.com, Barnes & Noble, Books-A-Million, Book Depository, Target.com,Walmart.com, and other booksellers. The book is available in both print and eBook formats.

Author

Lee A. Wilkinson, PhD, is a licensed and nationally certified school psychologist, and certified cognitive-behavioral therapist. He provides consultation services and best practice guidance to school systems, agencies, advocacy groups, and professionals on a wide variety of topics related to children and youth with autism spectrum disorder. He is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and editor of a best-selling text in the APA School Psychology Book Series,  Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools. His previous book, Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT, was honored as an “Award-Winning Finalist in the “Psychology/Mental Health” category of the 2016 Best Book Awards.”

APA School Psychology Book Series - Autism in Schools: Evidence-Based Assessment & Intervention

Part of the Applying Psychology in the Schools Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools, is an essential reference for professionals in need of the most recent and reliable research information on identifying and providing interventions for the increasing number of children with autism spectrum disorder (ASD).

This book is an authoritative resource that presents up-to-date research and evidence-based tools for accurate assessment and intervention. It includes procedures to help identify children using the DSM-5 symptom criteria and offers essential guidance for assessing a variety of emotional, behavioral, and academic problems. The text provides practitioners with an evidence-based assessment battery, which includes tests of cognitive, academic, neuropsychological, and adaptive functioning. The pragmatic, social-communicative functions of language are considered together with assessments to identify language deficits. 

Readers also learn to identify comorbid (co-occurring) emotional and behavior problems of children with ASD and understand techniques and strategies to enhance home-school partnerships and engage parents as active partners in the decision-making process. Each chapter is based on the principles of evidence-based practice. Many chapters feature case vignettes to illustrate best practice in the school setting. The volume concludes with a primer on ASD-related litigation issues and discusses relationships between special education law, provision of services, and placement decisions.

👉 Read a Free Preview of Autism Spectrum Disorder in Children & Adolescents

Reviews

"This fantastic resource is a must-read for professionals and students across many disciplines. Contributors provide critical information on a comprehensive range of topics with an emphasis on evidence-based approaches and practical applications." -Natacha Akshoomoff, PhD, Associate Professor, Department of Psychiatry and Center for Human Development, University of California, San Diego

"Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools serves as an excellent resource for professionals working with children with ASD in educational settings and covers many fundamental aspects that need to be considered in assessment and intervention practices. Overall, this book thoroughly integrates current research and theory as well as relevant practice in school settings and will allow practitioners to further their conceptual understanding of assessing and treating ASD."
- Canadian Journal of School Psychology

“Wilkinson has put together a book that is quite readable and interesting. Difficult concepts are explained clearly but concisely. The style and quality of writing is consistently good across chapters. A strength of this book is the breadth of coverage. The authors meet the goal of providing professionals with information on ASD, screening, assessment, and interventions for the classroom.” - Journal of Psychoeducational Assessment 

"This concise book provides a comprehensive and very readable introduction to best practices in the assessment and treatment of ASD in school settings. It succinctly informs the professional reader about the theoretical and research foundations underlying its many suggestions for practice, which are further enhanced by the liberal use of vignettes." -PsycCRITIQUES

"An excellent and accessible synthesis of the evidence base for school-based interventions in ASD and a comprehensive look at the psychological profile of the child with autism." - The Association for Child and Adolescent Mental Health 

"In its current form, Wilkinson has fashioned a very good book for ASD school practitioners, with commendable interdisciplinary appeal and a much needed dose of empiricism!"
-New England Psychologist

“Overall, Wilkinson’s text is like a guided tour of the parallel yet overlapping worlds of school and clinical practice, which many of our patients and families navigate daily. It will contribute to the reader’s knowledge of ASDs and more broadly of how schools accommodate and work with special-needs children.” – Journal of the American Academy of Child & Adolescent Psychiatry

Availability

Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools is in stock and available from APA Books. It can also be ordered from Amazon.com, Barnes & Noble, Books-A-Million, Book Depository, and other booksellers. The book is available in both print and eBook formats. Examination and desk copies are available to college and university faculty.

Lee A. Wilkinson, PhD, is a licensed and nationally certified school psychologist, and certified cognitive-behavioral therapist. He provides consultation services and best practice guidance to school systems, agencies, advocacy groups, and professionals on a wide variety of topics related to children and youth with autism. He is author of the award-winning books,  A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).

Independent Living on the Autism Spectrum

Independent Living on the Autism Spectrum

There has been a worldwide increase in reported cases of autism over the past decade. The prevalence rates in the US have risen steadily, from one in 150, to one in 110, and now to one in every 54 American children. This increase in the prevalence of ASD indicates that a correspondingly large number of youth will be transitioning into adulthood in the coming years. For example, it is estimated that approximately 50,000 adolescents with autism will turn 18 years old this year in the U.S. Unfortunately, outcomes are almost universally lower for young autistic adults compared to their peers.
                                                                             Research

As these numbers continue to rise, there is a pressing need to understand the transition experience of young adults with ASD in today’s world. According to a study published in the journal Autism, young autistic adults are more likely to live with their parents and least likely to live independently after leaving high school as compared to those with other types of challenges. For the study, researchers examined the prevalence and correlates of three living arrangements (with a parent or guardian, independently or with a roommate, or in a supervised setting) among a nationally representative sample of 620 postsecondary young adults with ASD since leaving high school. They were compared with 450 individuals with intellectual disability (InD), 410 with learning disabilities (LD) and 380 with emotional disturbance (ED) who were all part of the National Longitudinal Transition Study-2, a long-term federally-funded survey of students in special education and their parents.

Compared with other young adults with special needs, young adults with ASD were significantly more likely to have ever lived with a parent or guardian (87.1%) and less likely to have ever lived independently (16.6%) since leaving high school. In follow-up analyses, the researchers found no independent living among young adults with ASD who had been out of high school for 2 years or less at the time of the survey. 

Overall, the study’s findings show that young autistic adults have a different residential transition experience than their peers with LD, ED, or InD. They resided with a parent or guardian at higher rates and for longer periods of time after leaving high school than young adults with other disabilities. Moreover, young adults with ASD had the highest rate of supervised living arrangements and the lowest rate of independent living since leaving high school. These results suggest that young autistic adults are particularly vulnerable during the initial years in the transition to adulthood where they experience a shift in service provision after leaving high school. Consequently, many are not experiencing opportunities to explore various residential options as young adults.

Implications

The evidence presented in this study suggests that the vast majority of young adults with ASD will be residing in the parental or guardian home during the period of emerging adulthood. The lack of services available to help young autistic adults transition to greater independence has been noted by researchers for a number of years and has become an increasingly important issue as children identified with ASD reach adolescence and adulthood. Comprehensive transition planning and support for students leaving high school and exiting special educational programming, each with unique strengths, interests, and challenges, is an urgent task confronting our communities and schools. Greater emphasis must be placed on transition planning as a key process for helping youth build skills and access services as they leave school and enter adulthood. 

More research is needed to identify ways to effectively implement residential transition plans that best meet the needs and pref­erences of young autistic adults and their families. Research suggests that prolonged caregiving of an adult child with autism can adverse effects on maternal well-being. Thus, investigating a variety of in-home interventions that might improve the quality of life for families and adults may be helpful in that the vast majority of young adults are residing in the parental home. Lastly, the focus of intervention/treatment must shift from remediating the core deficits in childhood to promoting adaptive behaviors in secondary education that can facilitate and enhance ultimate functional independence and quality of life in adulthood. This includes addressing new developmental challenges such as independent living, vocational engagement, postsecondary education, and family support.

Key References and Further Reading

Anderson, K. A., Shattuck, P. T., Cooper, B. P., Roux, A. M., & Wagner, M. (2014). Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder. Autism, 18, 562-570.  doi: 10.1177/1362361313481860

Lake, J. K., Perry, A., & Lunsky, Y. (2014). Mental health services for individuals with high functioning autism spectrum disorder. Autism Research and Treatment, Volume 2014, Article ID 502420. doi:10.1155/2014/502420

Orsmond, G. I., Shattuck, P. T., Cooper, B. P., Sterzing, P. R., & Anderson, K. A. (2013). Social participation among young adults with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 43, 270-2719. doi 10.1007/s10803-013-1833-8

Roux, A. M., Shattuck, P. T., Rast, J. E., Rava, J. A., & Anderson, K. A. (2015). National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University. Available from http://drexe.lu/autismindicators

Ohio Center for Autism and Low Incidence (OCALI). Transition to Adulthood Guidelines.
http://www.ocali.org/project/transition_to_adulthood_guidelines

Virginia Department of Education, Office of Special Education and Student Services (October, 2010). Autism Spectrum Disorders and the Transition to Adulthood.

Wagner, S. (2014). Continuum of services and individualized education plan process. In L. A. Wilkinson (Ed.). Autism spectrum disorder in children and adolescents:  Evidence-based assessment and intervention in schools (pp. 173-193). Washington, DC: American Psychological Association.

Wilkinson, L. A. (2017). A best practice guide to assessment and intervention for autism spectrum disorder in schools. Philadelphia & London: Jessica Kingsley Publishers.

Wrightslaw. Transition Planning. http://www.wrightslaw.com/info/trans.index.htm

Lee A. Wilkinson, PhD, is a licensed and nationally certified school psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning books, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT. He is also editor of a text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition)

Sensory Hypersensitivity in Autistic Adults

Sensory Hypersensitivity in Autistic Adults

Anecdotal reports and empirical evidence suggest that atypical or unusual sensory responses are a common feature of autism spectrum disorder (ASD). Studies report that from 45 to more than 90 percent of people with autism either ignore or overreact to ordinary sights, sounds, smells or other sensations. Sensory issues are now included in the DSM-5 symptom criteria for restricted, repetitive patterns of behavior, interests, or activities (RRB). This includes hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment; such as apparent indifference to pain/heat/cold and adverse response to specific sounds or textures.  Although no one single type of sensory problem is consistently associated with ASD, auditory sensitivity is often cited as the most disturbing and challenging for autistic individuals.

We live in an incessant cacophony of noise. In fact, scientists say it’s the noisiest age in human history. We know that “noise pollution” can cause hypertension, high stress levels, tinnitus, hearing loss, sleep disturbances, and other harmful effects. Sound becomes unwanted when it either interferes with normal activities such as sleeping, conversation, or disrupts or diminishes one's quality of life. Certain sounds are particularly annoying collectively to us all. However, many of the everyday noises other people take for granted can be very painful and cause unwanted intrusions for autistic adults. For example, many autistic adults report sound sensitivity problems such as hyperacusis, misophonia, hypersensitive hearing at certain frequencies, and phobias (phonophobia) related to specific sounds. When present, sensory problems can interfere with adaptability in many areas of life (communication, daily living, socialization, occupational). Understanding sensory issues in adults on the autism spectrum is critical to the identification and prescription of appropriate interventions especially considering studies that suggest a link between anxiety and sensory over-responsivity which can further compromise an individual's ability to function successfully in daily life.

Research

A study published in Autism investigated sensory over-responsivity in adults compared to control participants and the extent to which daily life experiences were endorsed as uncomfortable or distressing by those on the spectrum. The researcher’s hypothesized that adults with autism would report more sensory over-responsivity than controls. A second objective was to test whether sensory over-responsivity is linked to autistic traits in adults with and without autism.

Adults with (n = 221) and without (n = 181) autism spectrum conditions participated in an online survey. The Autism Spectrum Quotient (AQ), the Raven Progressive Matrices and the Sensory Processing Scale were used to characterize the sample. Adults with autism spectrum conditions reported more sensory over-responsivity than control participants across all sensory modalities (vision, hearing, touch, smell, taste and proprioceptive). However, the highest mean scores were reported for Hearing and Touch on the Sensory Processing Scale.

These findings highlight the importance of measuring each sensory domain separately rather than combining scores from various sensory domains. Notable in this study was the association between sensory over-responsivity and autistic traits. Increased sensory sensitivity was associated with more self-reported autistic traits, both across and within groups. These results indicate that autistic adults experience sensory over-responsivity to daily sensory stimuli to a high degree and that a positive relationship exists between sensory over-responsivity and autistic traits.

Implications

Despite its limitations, this study shows that autistic adults self-report over-responsivity across multiple sensory domains (vision, hearing, touch, smell, taste and proprioceptive) that affect their daily life routines and thus quality of life. Auditory over-responsiveness was among the most frequently reported by participants indicating that autistic adults experience challenges to daily auditory stimuli to a high degree. Although sensory symptoms may improve with maturation for typical individuals, sensory features in ASD remain stable and often become more challenging during adulthood. Likewise, sensory over-responsivity has also been linked to higher rates of depression and anxiety. 

Although there is no cure for sensory sensitivity, there are various techniques as well as some lifestyle modifications that can tone down the symptoms of auditory sensitivity, so it does not severely interfere with everyday life. They include exposure and response prevention (E/RP) treatment; habituation training, applied relaxation, positive imagery, attention shifting, psychoeducation, cognitive restructuring, and background sounds to cope with hyperacusis. The most effective solutions involve increasing the tolerance of noise by exposing the person to sufficient noise to build up his or her “immunity.” Over-protection may only further increase the effect of extreme sensitivity to sound. Evaluating and attending to over-responsivity have implications for understanding and addressing the sensory components of autistic adults' daily life routines and roles. Appropriate intervention should be directed towards sensory issues that may be contributing to emotional and psychological challenges and towards designing sensory friendly domestic and work environments.

Tavassoli T., Miller, L. J., Schoen, S. A., Nielsen, D. M., & Baron-Cohen, S. (2014). Sensory over-responsivity in adults with autism spectrum conditions. Autism, 18, 428–432.  
doi: 10.1177/1362361313477246

Lee A. Wilkinson, PhD, is a licensed and nationally certified school psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning books, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT. He is also the editor of a text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd edition).