Self-advocacy, an essential ingredient in our quest for satisfaction and fulfillment in life, is a learned skill that involves self-awareness, social and communication strategies, and behavioral competencies. Self-advocating involves communicating a person’s needs so that another person is able to understand and assist them in modifying an environment or situation (Shore, 2006). Being able to identify one’s needs and desires and work toward the goal of attaining them can present a challenge for everyone. While most people seem to learn these skills through observation and practice, those on the autism spectrum often need direct instruction. For individuals with autism, these skills present a challenge, especially considering often cited difficulties in self-determination, social interaction, and communication. Merely being able to politely and clearly articulate one’s needs and wishes can be difficult for people with ASD. In this article, we focus on research-based strategies to enable and empower adolescents with autism to become effective self-advocates.
There are differing opinions as to the use, meaning and purpose of the term self-advocacy. Over the past decade, a socio-political shift within the world of autism theory and practice has led to the emergence of an autistic culture and self-advocacy movement, along with the assertion that autism is a valid way of being (Stevenson, 2015). These are worthy principles and theories. However, our interest here is based more broadly on the development of competency in advocating for oneself regardless of the purpose. More specifically, advocacy skills should be generalizable and employable in varied situations and settings, of course with modifications.
In order to help students with autism build requisite skills for self-advocacy, student participation in planning and managing their own programs and goals is critical. Communication skills related to self-advocacy should constitute a major curriculum component, which can be threaded throughout varied coursework and experiences. For example, teaching students to request a break or assistance through the use of visual aids can, over time, help them to replace maladaptive behaviors with proactive communication skills. Opportunities to build and/or improve self-determination abilities and self-regulation can be incorporated into almost every learning experience. An example of this includes incorporating a sensory diet into a student’s daily routine to teach self-regulation tactics so that when agitated, the student independently will use a chosen sensory item to stay calm. These skills are most effectively taught through well-planned and highly structured activities, which can be taught in school-based and community-based settings.
Studies have demonstrated a positive correlation between acquisition of self-advocacy skills and fulfillment in adulthood (see, for example, Waltz, et al., 2015). To reach goals that are attainable and satisfying, students need to develop self-awareness of their ability levels so that they can develop realistic expectations, with emphasis on special strengths and affinities toward particular activities. Intrinsically tied to self-determination, self-advocacy includes several overlapping skills (Hammer, 2016). Students should learn to:
- have knowledge of needed services and accommodations and be able to request them
- know who to ask and where to go to get assistance and support
- understand their strengths, talents, and interests
- create personal goals and follow a path to achieve those goals
- make choices
- use appropriate language when advocating for their needs and wants
Educators can provide choice-making opportunities beginning at an early age. Some examples include: “What would you like to do next?” or “Where would you like to sit while working on this task?” Additionally, it is of paramount importance to teach students when and how to say “no”. Using their words to avoid or leave unpleasant or dangerous situations is a critical life skill.
One often-noted method of improving student self-advocacy skills is through student involvement in the IEP process (Test & Neale, 2004). Special education law (IDEA 2004) mandates that all students must be included in program planning to the best of their ability. Some helpful ideas for encouraging IEP participation include:
- beginning inclusion of children in school meetings in the primary grades
- keeping language simple and conversation clear with visual aids as needed
- emphasizing students’ strengths
- raising awareness of areas of need
- addressing the student directly in the meetings.
Students should be prepared to participate in the IEP meeting in a meaningful and effective manner, articulating strengths and weaknesses, as well as program preferences. The purpose of the IEP meeting should be explained clearly, followed by the student’s demonstration of understanding of the meeting’s goals and their role in the meeting. It can be helpful to role play how the meeting will look, with specific reports and interaction so that students will know what to expect. Strategies can be reviewed and questions that might be asked in the IEP can be rehearsed. Teachers can take advantage of this learning opportunity to show how steps taken in preparing for IEP meetings may be generalized to other situations (Ellis, et al., 1991).
When students with autism can effectively advocate for what they want and, thereby, gain access to preferred activities, expressions of negative emotions and inappropriate behavior tend to decrease (Wood, 2019). The adoption of a positive psychology and strengths-based perspective in self-advocacy instruction (Dykshoorn & Cormier, 2019) refocuses intervention efforts away from reducing deficits and toward enhancing those activities or skills that yield social connections and well-being.
Conclusion
Self-advocacy is the process of communicating one’s needs and wants effectively. For individuals with autism, this skill often needs to be taught directly. Self-advocacy instruction can be incorporated throughout the daily curriculum to build proactive communication skills, social-awareness, self-determination and self-regulation skills. The IEP process, for example, provides several opportunities for developing self-advocacy competency through student preparation and engagement. By preparing students for IEP conferences, educators can cultivate students’ self-awareness and empower them to advocate for their needs, leading to increased independence and fulfillment. Student participation in planning and managing their own goals is essential to building self-advocacy competence.
Carly Werner, MS, is Director of Education and Dianne Zager, PhD, is Member, Board of Directors at Boca School for Autism in Boca Raton, Florida.
Questions may be addressed to Ms. Carly Werner at mswerner@bocaschoolforautism.org.
References
Dykshoorn, K. L., and Cormier, D. C. (2019). Autism spectrum disorder research: time for positive psychology. Autism Open Access, 9, 235. doi: 10.35248/2165-7890.19.9.235
Ellis, E., Deshler, D., Lenz, B., Schumaker, J., & Clark, F. (1991). An instructional model for teaching learning strategies. Focus on Exceptional Children, 23(6), 1-24.
Hammer, D. (2016, June). Help children learn to self-advocate. Organization for Autism Research. Retrieved 11/22/22.
Shore, S. (2006, March). Self-advocacy as part of transition planning for people with autism. Organization for Autism Research (OAR) Newsletter. Retrieved 12/2/22.
Stevenson, N. (2015). Autism Doesn’t Have to be Viewed as a Disability or Disorder [blog post]. Retrieved 11/20/2021.
Test, D. W., & Neale, M. (2004). Using the self-advocacy strategy to increase middle graders’ IEP participation. Journal of Behavioral Education, 13(2), 135-145.
Waltz, M,. van den Bosch, K., Ebben, H., van Hal, & Schippers, A. (2015) Autism self-advocacy in the Netherlands: past, present and future, Disability and Society, 30(8), 1174-1191, DOI: 10.1080/09687599.2015.1090954
Wood, R. (2019). Autism, intense interests and support in school: from wasted efforts to shared understandings. Education Review. 73, 1–21. doi: 10.1080/00131911.2019.1566213
