The Power of Self-Advocacy

Dania Jekel, Executive Director of AANE
Blog Post

At the end of December, an elderly gentlemen (let’s call him Chris), who has been a part of our community for many years and is on the autism spectrum, had a heart attack. After being treated in the hospital for a week, he was moved to a rehab center. The move occurred late at night, and he was moved into a room with a hard-of-hearing roommate who was watching a hockey game at full volume. Fortunately, Chris was able to advocate for himself and let the staff know that he was on the autism spectrum and very sensitive to sound. They were receptive and moved him to a room by himself where he could have peace and quiet and the ability to rest. His disclosure and self-advocacy skills proved essential for getting the needed accommodations, including food preferences, concrete communication with the staff, and the need for detailed, written, follow-up instructions. Fortunately, he is recuperating and will return home soon.

To me, this story demonstrates the importance and even critical necessity of learning self-advocacy skills starting early. You may need it in all kinds of situations: during travel, medical appointments, with your teacher or professor, with your supervisor at work, or even in a store.  Knowing how to advocate for yourself is much more helpful than panicking, which increases the likelihood of doing or saying something you will regret.

To become an effective self-advocate, I would suggest some very simple steps:

  1. Know yourself and your needs–whether sensory, social, or around executive functioning.
  2. Be clear about how much you will disclose about your Aspergers/autism or neurodiversity and how you will disclose.
  3. Practice advocating in a safe or less stressful environment so that no matter how stressed you are, or how difficult the environment, you will have the skills you need to be able to advocate for yourself.
  4. If you are a parent, help your child learn these skills early. Start slowly by having your child join you in your advocacy efforts and then encourage them to begin advocating for themselves–again, first in a safe environment in small situations until they are ready to move on to more significant matters.