In this post, you will learn why self-advocacy is neurologically difficult in the autism spectrum, and how to protect the ASD individual's needs from being missed.
If you're like me, you've heard the term "self-advocacy" used frequently within schools, healthcare settings, and community agencies. What does this mean, and how does the focus impact those on the autism spectrum?
What is Self-Advocacy?
Selfadvocatenet.com defines self-advocacy as "the ability to speak up for yourself and the things that are important to you. Self-advocacy means you are able to ask for what you need and want and tell people about your thoughts and feelings... The goal of self-advocacy is for YOU to decide what you want then develop and carry out a plan to help you get it."
3 Reasons Why Autistics May Struggle With the Demands of Self-Advocacy
1. Self-advocacy requires the individual to identify areas of struggle, the source of the difficulty, and what will help.
The brain pathways that run through the center and into the front of the brain are the areas that control "executive function" abilities. These pathways are also the seat of many autistic characteristics.
Metacognition is part of executive function and is often difficult for those on the spectrum.
What is metacognition? Metacognition is the ability to identify what we know and what we don't know.
Our brain is using metacognitive function when we say, "Professor. I understand the first part of the theory you're discussing, but where I get lost is ... " OR "Dr. Smith, I understood what you said about picking up my medication but didn't understand what you said about taking different amounts each day."
Metacognition is also at play when we identify WHY we are lost AND what would help us better understand. For example, "I think if you explained this piece of the physics equation in a different way, it might help me understand."
Analogy: To make a comparison, let's assume we determine that seeing color is very important for many life tasks. We tell those around us that, because color distinctions are important, we expect everyone to demonstrate this skill. Well, what happens to the individual who is color blind? Although it may be theoretically understandable to encourage people to use this critical skill, it is not practically achievable for those who are color blind.
2. Self-Advocacy Requires Us to Tell People About Our Thoughts and Feelings
By definition, autism includes significant neurologically-based difficulty in 1) identifying internal states, 2) wrapping words around those experiences, 3) approaching others to start a conversation, and 4) expressing needs and struggles to others.
3. Self-Advocacy Requires Us to Develop and Carry Out a Plan to Help Get What We Need
This requirement takes us back to executive function deficits. The individual on the spectrum will typically struggle with prioritization, planning, breaking broad goals into smaller achievable steps, and shifting behavioral patterns.
Unintended Consequences of Requiring Independent Self-Advocacy Skills From the Autistic
I have seen many on the spectrum suffer silently, mentally paralyzed and unable to seek help in crucial situations. Picture the university student who stops attending classes due to increasing social anxiety and falls through the cracks until a full semester has passed. Consider the autistic adult with chronic medical conditions who allows an infected wound to go untreated for five months before becoming septic and ending up in the ICU.
We Can Do Better
The empowering news is that, when we fully understand individual differences and the impact of neurology on behavior, we can create expectations that are both achievable and safe.
Partner with the Individual to Identify Needs
When we realize that the ASD individual may not understand when, why, or how a situation began to fall apart, we can help. One approach is to point out what we observe and ask for input. "I think an important thing that got missed was XYZ. What do you think?" Some people will be able to benefit from this coaching. "Oh, I didn't know that was important."
2. Involve Supportive Others in Communication
Allow and encourage supportive individuals in the autistic's life to become part of his "wellness team." Parents will often play a key role in the success of the ASD college student. Adult children may help an autistic parent manage medical conditions and communicate with agencies or physicians.
If no family members are available, identify a point-person to cultivate a communication relationship with the individual. For example, a counselor could check in frequently with a student. A nurse or caseworker may reach out and check on the ASD individual's wellness in his home environment.
3. Involve Supportive Others in Planning and Execution
Assist the autistic adult with goal setting and planning (including strategies to move forward and make progress). Be present and available to monitor progress and help the individual "get unstuck" when barriers occur.
The importance of having achievable expectations for others that are individualized and consistent with each person's ability level cannot be overstated.