Self-Advocacy and Emerging Adults on the Autism Spectrum

Background:

As young adults with autism leave the shelter of educational entitlements and the family home and transition into higher education and employment, self-advocacy is indispensable. Self-advocacy and transition planning programs are available for the general disability population, and there is a small body of literature regarding their effectiveness in positively impacting measures of self-determination, improved self-advocacy, and decision-making. However, a vital need for self-advocacy curricula remains, specifically for young people with autism in transition to adulthood. In addition, studies of such curricula to measure outcomes and to establish standards of practice in instruction are virtually non-existent. Illustrations from the panel participant’s experience as a person with autism and as a parent of a young adult with autism will be shared.

Objectives:

For individuals with autism especially, learning skills to increase awareness of environmental triggers, cues, and situations that require self-advocacy decisions are essential. For example, an individual can work to understand how his or her own physiology and sensory experience interface with a given environment and then develop a strategy to improve his or her participation in that setting. Social awareness is another core component of self-advocacy development. For many individuals on the autism spectrum, addressing social challenges and differences, such as interpreting non-verbal cues, managing anxiety, and navigating workplace or college campus interactions, will be a high-frequency need that requires self-advocacy strategies. Supports and instruction aimed at improving ability should address self-regulation plans and strategies. Such plans should be developed out of the interplay between a person’s self-awareness and social-environmental understanding.

Methods:

Strong self-advocacy programs for individuals with disabilities are built on several key components. An individual’s development of self-determination is paramount, with an emphasis on communicating, acting, and decision-making. Illustrative examples from evidence-based, self-advocacy curricula and programs—specifically the Integrated Self Advocacy ISA programs—will be provided. Case studies will illustrate methods of increasing self-advocacy competencies for young adults in the workplace and in higher education settings.

Results:

Case data on the ISA Sensory and Social Scans put into practice in autism transition classrooms will be provided, with further summary discussion of the state of very limited research in self-advocacy measures, outcomes and effective programming. Additionally, ISA instruments for assessing self-advocacy competencies and measuring individualized progress on self-advocacy goals will be introduced.

Conclusions:

500,000 students with autism are expected to exit high school into young adult life in the next decade. Ensuring that young adults with autism not only understand their differences, but also have the liberty and power to act on their needs and rights both at work and in higher education settings, is one of the most essential lessons we can impart to them as they transition to adulthood. Greater efforts are needed in funding, establishing and researching self-advocacy curricula and programs in order to move the needle on real-world outcomes for young adults with autism who currently face unspeakably high rates of disengagement from employment and higher education in the years immediately following high school.