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Developing Self-Advocacy Skills to Last a Lifetime


Written by a Self-Advocate, who wishes to remain anonymous

How do individuals with autism advocate for themselves? The general definition of self-advocacy is to stand up for yourself by speaking up and asking for what you want. Everyone (not just people with autism) self-advocates. However, it's a little different if you're somebody with autism. Developing advocacy skills is a process and doesn't happen overnight. Learning to advocate for small things at an early age can build advocacy skills that will have life-long benefits.

Renowned autistic author John Elder Robison states in his article titled "Autism and Self-Advocacy" that, due to their major communication issues, individuals with severe autism are unable to self-advocate. I disagree with Robison because individuals with severe autism need to have methods to communicate their needs and wants. A child throwing a tantrum is self-advocating, though perhaps not in the most effective manner. In the case of an individual with autism, regardless of verbal abilities, finding an effective and efficient method of communicating is critical.

Teaching self-advocacy can start at a very young age. One way to build self-advocacy skills is by providing opportunities to make choices. For example, give children choices about the foods they eat or the activities they do. Children with limited verbal skills can still indicate their preferences by pointing. Give the child a choice between two or three things. Initially, to make it easier on the child, pick one or two things that you know the child doesn't like and pair them with something highly preferred. This type of "forced choice" will help develop decision-making skills that can be gradually expanded.

Being comfortable with making decisions and speaking up about preferences and needs is essential for developing independence as an adult. I am a young adult who was diagnosed with Asperger Syndrome as a toddler. As I got older and went further on into my education, I relied more on myself rather than my parents and teachers when it came to knowing which accommodations in school suited me the best. In relation to me as an individual with autism, I requested accommodations in college for exams, such as isolation and extra time. Therefore, I was responsible for letting my professors know what my accommodations were.

It is essential for college-aged students and adults with ASD to advocate for their needs when communicating with instructors, friends, and colleagues. If they don't self-advocate, there may be misconceptions that arise such that they may miss opportunities to participate in class, social events, or in a work environment.

Also, many people with autism can tend to express themselves better in writing than verbally. As for me, I can write my thoughts freely on a topic I like, such as pro sports. Therefore, it can be easier for me to express myself in writing than verbally. It's important for my co-workers and friends to know that I need more time to express myself verbally than I do in writing. This helps me to avoid any misconceptions, such as others thinking that I'm acting rude when I don't speak for a certain period of time. What I regret doing in college was not participating in class more often. Therefore, a method I could've used in college to self-advocate for myself was that I should've asked the instructor to call my name more often.

What I would tell other people with autism is speak up for what you want. Developing advocacy skills takes time and effort. As you go throughout the transitions of life, you'll need to self advocate more and more. In the end, this will help you become more independent.

The Center for Autism Research and The Children's Hospital of Philadelphia do not endorse or recommend any specific person or organization or form of treatment. The information included within the CAR Autism Roadmap™ and CAR Resource Directory™ should not be considered medical advice and should serve only as a guide to resources publicly and privately available. Choosing a treatment, course of action, and/or a resource is a personal decision, which should take into account each individual's and family's particular circumstances.