Positive Approaches Journal, Volume 11, Issue 1

Conner, Randall, Conroy, Cramer, Lubetsky | 14-25

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Needs of Autistic Adults

Autism spectrum disorder (ASD) is defined as a neurodevelopmental diagnosis with social-communication impairments, the presence of restricted and repetitive behaviors and interests, and sensory differences.¹ ASD is considered a lifelong disability; however, most resources and research focus on childhood.² Over a third of autistic people do not receive any support services after they complete high school. ³ The service needs of autistic adults have increasingly become a point of focus⁴, although each individual’s needs, just like autism itself, are quite variable.

Overall, studies show that autistic adults report a lower quality of life than non-autistic adults,⁵ although these traditional measures include independence and multiple social relationships, which may not be as important to all autistic adults. ⁶ Autistic adults are more likely to experience difficulties in obtaining higher education, finding and keeping employment, living independently and accomplishing daily living skills, and having successful social relationships. Compared to adults with other diagnoses, autistic adults are less likely to attend and complete post-high school education and vocational training.⁷ A national sample of adults 21-25 years old found that nearly half of autistic adults had never been employed.⁸ Many autistic adults have valuable work skills but struggle with the interpersonal skills needed to interview and keep their jobs. ⁹ Relatedly, a majority of young autistic adults do not live independently.¹⁰ Services that support autistic adults in these domains is desperately needed.

Psychiatric Rehabilitation (PR)

PR models arose following the deinstitutionalization movement of individuals with mental health diagnoses in the United States and Europe. PR models include Clubhouse, Peer Support, and Boston Model; all models emphasize self-determination, community inclusion, and are person-centered and strengths based.¹¹ PR was originally intended for adults with severe and persistent mental illness (SPMI), with the goal of keeping individuals in the community whenever possible and assisting them with their self-defined goals and progress. PR does not offer medication management or psychotherapy for SPMI; rather, PR is meant to accompany other treatments that are maintaining mental health and are recovery oriented. In Pennsylvania, SPMI is defined as schizophrenia spectrum disorders (schizophrenia, schizoaffective disorder), major mood disorders such as bipolar disorder and major depressive disorder, and borderline personality disorder.

The Boston Model of PR, which is used at the Psychiatric Rehabilitation program at the UPMC, focuses on five daily living domains: Working, Learning, Social, Daily Living, and Self-Maintenance (Wellness). Each client selects and works towards goals within these domains with the support of a counselor. Working with a counselor can take place in a typical clinic environment or out in the community, depending on the goal. PR also offers counselor- and peer-led groups in a variety of domains, which clients can choose to participate in.

UPMC’s PR Pilot Program

Seeing the parallels between the domains targeted in PR and the needs of autistic adults, we identified PR as a promising program to adapt for use in ASD. PR is a long-standing and widespread program in the US and Europe, which also lends promise to widely disseminate the program to more autistic adults. At UPMC, we created an ASD-specific carve-out within the existing PR program. We added an ASD-specialist counselor to provide individual counseling, ASD-specific groups, and training to all of the PR counselors and staff. Additionally, all autistic clients also had access to all other PR skills-learning and social groups that were offered at the site. ASD specialist counselors provided regular training to other PR counselors and staff about ASD and working with autistic adults to aid integration into all PR groups. Autistic clients were admitted to the PR program either due to having a cooccurring diagnosis considered an SPMI, or another mental health diagnosis deemed “an exception to medically necessary criteria” by a licensed professional of the healing arts (LPHA), such as licensed psychologists, psychiatrists, and primary care physicians. ASD alone was not considered an accepted diagnosis for billing insurance. We accessed medical records of all of the autistic clients to assess the success of this pilot program.

The ASD pilot program began at UPMC in 2013, and we assessed the medical data from autistic adults who participated in the program from 2013-2019. In that time, 53 adults ages 18-64 years old participated in the PR carve out. Besides a cooccurring psychiatric diagnosis, participants had to reside in Allegheny County to qualify for PR. PR is free to all clients who qualify. Typically, participants are referred to Psychiatric Rehabilitation programs by what is known as a LHPA. The term is limited to a physician, physician’s assistant, certified registered nurse practitioner and psychologist. The referral must be a written recommendation for psychiatric rehabilitation. Of the 53 participants, eight identified as female (15%), the majority were White (83%; four/7.5% each identified as Black or Asian), eight had a co-occurring diagnosis of Intellectual Disability, four (7%) were students, 14 (26%) were unemployed, and 24 (45%) lived with their families and were financially dependent.

All clients were required to attend individual counseling sessions (45% only attended individual sessions); ASD groups and all other PR groups were optional. On average, clients attended the PR program for about two years (Mean time at PR= 2.03 years). Of the 53 participants, many received outside services too: 40 (75%) had outside psychiatric medication management, 20 (38%) had outside therapy services, 21 (40%) were receiving vocational rehabilitation services, 24 (45%) received social security income or social security disability income (SSDI), and six (11%) were autism waiver recipients. During their time in PR, four clients (7%) were admitted for psychiatric hospitalizations.

Below are descriptions of each domain and examples of goals from each of the PR domains.¹²

Socializing	Working	Learning	Living	Self- Maintenance
• making/keeping friends or romantic relationships • verbal/nonverbal social skills across contexts • boundary setting • increasing community inclusion Example goal: make one close friend I can trust in emergencies Steps: • identify & attend 3 social activities a month • initiate conversation with a coworker each week • attend weekly PR group • work through barriers to interactions with PR counselors each week	• identifying potential employment • applying, interviewing, preparing for, & maintaining employment • communication skills with coworkers, asking for accommodations or recovering from poor performance assessments Example goal: obtain part-time employment Steps: • identify one job to apply to each week • update resume • identify social expectations throughout job search • practice interview skills & work through social barriers with PR counselor each week	• identifying & applying for educational programs based on strengths and realistic expectations • using problem solving, organization, & comprehension techniques • meeting social expectations needed for success Example goal: maintain 2.5 GPA or higher Steps: • maintain & review calendar daily • establish routine for studying, completing assignments, & attending office hours as needed • request accommodations through disability services • problem solve barriers to understanding materials, managing time,   communicating with classmates & professors with PR counselor	• acquiring & maintaining independent living skills like paying bills, money management, food shopping & cooking, laundry, home maintenance • managing calendar & time • using public transportation/obtaining driver's license Example goal: increase independence at home to prepare to live independently Steps: • create & maintain a budget for living expenses & savings • learn to do laundry, respond to mail, & do dishes • manage calendar of appointments & other activities • work through barriers with PR counselor weekly	• keeping up with physical health, taking medication, hygiene & other activities of daily living • diet & exercise • mental health management, including crisis planning & wellness recovery action plans Example goal: improve physical health as a means of improving mental health Steps: • identify a dentist & PCP who take my insurance & schedule an appointment • get 30 minutes of exercise 3-5 days a week by taking brisk walks or attending yoga • take all medications as directed daily • work through barriers to regular exercise & taking medications with PR counselor week

Figure 2. PR Domain Descriptions and Example Goals¹²

The most popular goal domain was Social, with 80% of clients gaining skills, and Living had 78% of clients gaining at least one skill. In the Work domain, 72% of clients gained at least one skill, in Learning 67% of clients gained at least one skill, and in Self-Maintenance, 36% of clients gained at least one skill.

Outcomes and Future Directions

UPMC’s PR program continues to host a carve out to serve autistic adults, and referrals to the program continue. We created a written training guide for PR programs to adapt to serve autistic adults. This training guide has been distributed at statewide PR and ASD conferences and is available free upon request. We have also conducted trainings as requested for PRs and healthcare agencies that are interested in incorporating autistic adults into their existing PR program or are interested in creating a PR program specifically for autistic adults. Future work includes continuing to encourage PR programs to incorporate autistic adults into their programs.

References

1.     American Psychiatric Association. The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition: DSM-5. American Psychiatric Association; 2013.

2.     Office of Autism Research Coordination. 2016 IACC Autism Spectrum Disorder Research Portfolio Analysis Report.; 2016. Autism Spectrum Disorder Research Portfolio Analysis Report 2016 | IACC (hhs.gov).

3.     Shattuck PT, Wagner M, Narendorf S, Sterzing P, Hensley M. Post–High School Service Use Among Young Adults With an Autism Spectrum Disorder. Arch Pediatr Adolesc Med. 2011;165(2):1043-1049. doi:10.1001/archpediatrics.2010.279

4.     Interagency Autism Coordinating Committee (IACC). Interagency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorder 2018-2019 Update.; 2020. 2019 IACC Strategic Plan for Autism Spectrum Disorder Research | IACC (hhs.gov).

5.     Ayres M, Parr JR, Rodgers J, Mason D, Avery L, Flynn D. A systematic review of quality of life of adults on the autism spectrum. Autism. 2018;22(7):774-783. doi:10.1177/1362361317714988.

6.     Bishop-Fitzpatrick L, Hong J, Smith LE, Makuch RA, Greenberg JS, Mailick MR. Characterizing Objective Quality of Life and Normative Outcomes in Adults with Autism Spectrum Disorder: An Exploratory Latent Class Analysis. J Autism Dev Disord. 2016;46(8):2707-2719. doi:10.1007/s10803-016-2816-3

7.     Newman L, Wagner M, Cameto R, Knockey AM, Shaver D. The Post-High School Outcomes of Young Adults with Disabilities up to 6 Years after High School. In: Encyclopedia of Special Education (eds C.R. Reynolds, K.J. Vannest and E. Fletcher-Janzen); 2011. doi:10.1002/9781118660584.ese1672.

8.     Roux AM, Shattuck PT, Cooper BP, Anderson KA, Wagner M, Narendorf SC. Postsecondary employment experiences among young adults with an autism spectrum disorder RH: Employment in young adults with autism. J Am Acad Child Adolesc Psyshiatry. 2013;52(9):931-939. doi:10.1016/j.jaac.2013.05.019.

9.     Hendricks D. Employment and adults with autism spectrum disorders: Challenges and strategies for success. J Vocat Rehabil. 2010;32(2):125-134. doi:10.3233/JVR-2010-0502.

10.  Anderson KA, Shattuck PT, Cooper BP, Roux AM, Wagner M. Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder. Autism. 2014;18(5):562-570. doi:http://doi.org/10.1002/cncr.27633.

11.  Anthony W, Farkas M. A Primer on the Psychiatric Rehabilitation Process. Accessed April 24, 2022. https://cpr.bu.edu/wp-content/uploads/2011/11/Primer-on-the-Psychiatric-Rehabilitation-Process.pdf.

12.  Randall H, Conner CM, Z. Psychiatric Rehabilitation for Adults on the Autism Spectrum (guide/manual). ASERT Western Region, PA Department of Health and Human Services. 2019. Available upon request.

Biographies

Dr. Caitlin M. Conner, Ph.D., is a licensed clinical psychologist and researcher in the Department of Psychiatry at the University of Pittsburgh School of Medicine. Her work specializes in understanding and treating co-occurring mental health diagnoses in individuals with autism.

Heather Conroy, LCSW is a Licensed Clinical Social Worker and Executive Director/Co-Founder of Evolve Coaching, LLC, which focuses on providing specialized coaching support for education and employment for neurodiverse adults. She has expertise in working with autistic adults and served as one of the specialist autism counselors in the Psychiatric Rehabilitation project.

Ryan D. Cramer, LSW is the Program Director for Community Services within the Center for Autism and Developmental Disorders at UPMC Western Behavioral Health. He is also coordinator for the ASERT, Western Region. He is a Licensed Social Worker and has provided services and support to neurodiverse children, adolescents and adults and their families for the last twenty-eight years.

Martin J. Lubetsky, M.D., is Professor of Psychiatry at the University of Pittsburgh School of Medicine, and Senior Advisor of Child and Adolescent Psychiatry and Center for Autism and Developmental Disorders at UPMC Western Psychiatric Hospital. Dr. Lubetsky has worked in the clinical, training, administrative, and research areas of autism, developmental disabilities and child and adolescent psychiatry for over thirty-eight years. He provided diagnostic and clinical services to children, adolescents and adults with autism spectrum disorder, and intellectual disabilities with mental health issues. He has been active in developing awareness and support for the growth of community-based services. He is co-editor of the book Autism Spectrum Disorder, Oxford University Press, Inc.

Honor E. Randall, LCSW .is a Licensed Clinical Social Worker. She has expertise in working with autistic adults and served as one of the specialist autism counselors in the Psychiatric Rehabilitation project.

Contact Information

Caitlin M. Conner, Ph.D.

Research Assistant Professor

University of Pittsburgh School of Medicine

(412) 246- 5975

connercm2@upmc.edu

Heather Conroy, LCSW

Evolve Coaching, LLC

Executive Director/Co-Founder

heather@evolve-coaching.org

Ryan D. Cramer, LSW

Program Director

University of Pittsburgh Medical Center

cramerrd@upmc.edu

Martin Lubetsky, MD

University of Pittsburgh School of Medicine

University of Pittsburgh Medical Center, Western Psychiatric Hospital

Professor of Psychiatry; Senior Advisor, Child & Adolescent Psychiatry and the Center for Autism and Developmental Disorders; Director, Autism Services, Education, Resources and Training (ASERT), Western PA Region

lubetskymj@upmc.edu

Honor E. Randall, LCSW

honorrandall@gmail.com