Building Resilience and Appropriate Independence in Young Adults With Autism

As young adults with autism spectrum disorder (YAASD) transition out of the academic supports provided by school, these young adults experience a degradation of social skills over time. This has led to poor academic, educational and health outcomes. YAASD require continuous and ongoing skill development in order to maximize their potential; however, there are few services available to adults with autism to develop and maintain their skills. While interventions exist in early childhood, mid-childhood and adolescence, few programs have been focused on the young adult with autism. Resilience in Action (RiA), is a research study, performed and delivered in the community setting, which seeks to develop supports to address the 'adult world' needs of young adults with autism exiting out of secondary education.

The investigators propose to develop this program through three specific aims. In the first aim, the investigators propose in-depth interviews with adults with autism and/or their families and service providers to better understand barriers and facilitators to "adult living" after graduating out of the school system. In the second aim, the investigators will use the information gained from Aim 1 to develop a 12-week curriculum integrating a resilience framework and methodologies into a community adult life skills program for persons with disabilities. A trained transition curriculum expert who had developed transition curriculum for youth with autism spectrum disorder in our local school district will assist in this "adult" curriculum to fill gaps that exist in the school district curriculum. As part of the infrastructure and support for this pilot, the investigators will generate a protocol for the participant's existing case manager to help support youth and families after the curriculum is completed. The third aim is to then pilot test RiA on 30 young adults with autism who have recently graduated from the secondary education system. Through an iterative program evaluation, the investigators will further hone the intervention and adapt the program to different levels of disability and learning styles. The investigators will measure characteristics of those who were successfully engaged in the program and measure outcomes such as socialization, quality of life, vocational/social activities and self-efficacy. Through this research the investigators will have developed a final protocol for a resiliency course to be tested in a larger clinical trial to see how this type of curriculum can improve longer term social and health outcomes.

• Life Skills and Resilience Program (Behavioral): The 12 week life skills course includes resiliency modules that complement the strengths of participants as they progress toward the development and achievement of personal goals. The first module of the intervention engages youth through a caring/supportive relationship that sets these expectations. Activities are designed to support youth in identifying their existing strengths/skills. The second module explores, with youth, how they can apply and build upon their strengths/skills in the pursuit of self-generated goals. The third module is dedicated to building upon key problem solving skills that are especially important for young adults with autism, including conflict resolution and the management of stressors. The fourth module builds leadership capacity and self-advocacy skills.

Primary outcomes

• Resilience Scale [Assessed at baseline and 3-6 months post completion (up to 9 months post baseline measure)]: Resilience Scale (RS) developed by Wagnild and Young (1990) * Personal competence and acceptance of self and life, which measures the construct of resilience. * Adapted for 2nd and 5th grade reading level * Possible scores range from 25 to 175 with higher scores reflecting higher resilience
• McMaster Family Assessment Device (FAD), General Functioning Subscale [Assessed at baseline and 3-6 months post completion (up to 9 months post baseline)]: McMaster Family Assessment Device (FAD), General Functioning Subscale * The General Functioning Subscale ranges from 1 to 4 with higher scores indicating worse levels of family functioning. * A score of 2.00 in an individual item or above indicates problematic family functioning. * 12 questions score range 12-48
• PROMIS: Self Efficacy Scale [Assessed at baseline and 3-6 months post completion (up to 9 months post baseline)]: PROMIS® Self-Efficacy score A person's belief in his/her capacity to manage functioning and have control over meaningful events. The higher the score, the higher the capacity to manage functioning and control over meaningful events. * Raw scores reported (ranging from 10 to 50) * A higher PROMIS represents greater satisfaction with self-efficacy
• Pediatric Quality of Life [Assessed at baseline and 3-6 months post completion (up to 9 months post baseline)]: Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales * Validated quality of life measure that has been developed across different developmental ages and adults * Scale ranges from 0 to 100 and higher scores indicate better Health-Related Quality of Life * Four sub-scales include Physical Functioning, Emotional Functioning, Social Functioning, and School Functioning * Total Scale Score is the mean computed as the sum of all the items over the number of items answered on all the Scales
• Satisfaction With Social Roles (v2.0) [Assessed at baseline and 3-6 months post completion (up to 9 months post baseline)]: PROMIS Satisfaction with Social Roles (v2.0) * Measures satisfaction with performing one's usual social roles (e.g., "I am satisfied with my ability to participate in family activities") * Raw scores (ranging from 6 to 40) are converted to T-scores with a mean of 50 and standard deviation of 10 * A higher PROMIS T-score represents greater satisfaction with social roles and activities.

Secondary outcomes

• Employment/Volunteer Status [Assessed at baseline and 3-6 months post completion (up to 9 months post baseline)]: Percentage of study participants employed or volunteering. Please note that work was measured during the COVID-19 pandemic, which started right after the study began.

Sex: All, ages: 18 Years to 26 Years

Inclusion Criteria:

* Moderate to high functioning autism spectrum disorder, defined as an SRS T-score less than 75
* Participants must be able to participate in a one hour class with nine other participants and be able to interact with participants and the teacher without support.
* Completing the high school transition program or have exited the school system within the last three years

Exclusion Criteria:

* Non-English speaking
* Unable to consent
* Wards of the state
* Incarcerated.

Participant flow

Outcome results

• Resilience Scale (Primary), Mean, units on a scale: Baseline Measure 111.5556 +/- 22.5; Post Completion 114.28 +/- 31.12678 (p 0.3589)
• McMaster Family Assessment Device (FAD), General Functioning Subscale (Primary), Mean, score on scale: Baseline Measure 23.93 +/- 7.07; Post-intervention 23.88 +/- 4.90 (p 0.51)
• PROMIS: Self Efficacy Scale (Primary), Mean, units on a scale: Baseline Measure 30.65 +/- 9.08; Post Completion 31.72 +/- 8.96 (p 0.3375)
• Pediatric Quality of Life (Primary), Mean, score on a scale: Baseline Measure 69.0 +/- 17.72; Post Completion 71.50 +/- 13.68 (p 0.29)
• Satisfaction With Social Roles (v2.0) (Primary), Mean, units on a scale: Baseline Measure 48.12 +/- 14.63; Post Completion 47.88 +/- 13.62 (p 0.52)
• Employment/Volunteer Status (Secondary), Count of participants, Participants: Baseline Measure 17; Post Completion 21 (p 0.142)

Adverse events

Time frame: From enrollment to the end of course, which was approximately 20 weeks.

• Okumura MJ, Selling SK, Uba A, Martin-Herz SP, Seretan HH, Rosene L, Cohen J, Tebb KP, Rehm RS. Framework for developing self-actualization skills in young adults with autism. Health Care Transit. 2024 Jan 12;2:100038. doi: 10.1016/j.hctj.2023.100038. eCollection 2024. PMID 39712615

• Study Protocol and Statistical Analysis Plan (PDF, 2018-10-18)

• Megumi Okumura, MD, MAS, Principal investigator, University of California, San Francisco

NIH grants: R21MH115375