My View of Advocacy – by Damon Kirsebom

We are thrilled to share this piece by Damon Kirsebom. We so admire his work and how effectively he communicates important ideas! He is powerfully eloquent in how he presents his story and issues that are important to nonspeaking autistic folks, particularly communication as a human right. I very much recommend going to his YouTube channel to check out his excellent videos, which are wonderful resources to share, and following him on Instagram @damonkirsebom. He is a fellow advocate in Spellers & Allies Advocacy Network, and was selected as an All-Star Influencer Spellebrity by I-ASC in 2021.

My View of Advocacy

Damon Kirsebom

I remember, all too well, the difficult years before I learned to reliably communicate. The misconceptions about nonspeaking autistics were painful to bear, and I really felt so hopeless.

Once I learned to type out my thoughts, I immediately began advocating for the nonspeaking autistics who had yet to break through as I had.

I knew their pain.

It wasn’t long, actually, before people began to listen! The various doctors who knew me were astonished when I explained that I understood language very well—and I was sent for testing which proved my knowledge. Similarly, they immediately believed me when I shared that I couldn’t easily control my body movements—and ordered assessments which confirmed that I lacked body control. These doctors were able to rethink their understanding of nonspeaking autistic people. They had many questions, and they soaked up my answers with great interest.

Around the same time, I attempted to share my knowledge with other professionals who had worked with me for years.  Imagine my shock when, for example, the woman who was in charge of my therapy wasn’t at all interested in what I had to say! In fact, she tried to prevent me from typing at school, and insisted I continue using scripts (written by other people) for communication. At the time, I was devastated.

I must admit, advocacy is not for the faint of heart. The physical toll is one thing, but the emotional risk is quite another. I have had to hit the mental reset button many times.

This was my first lesson in advocacy:

 There are people who choose not to question what they have been taught. They do not mind if we never communicate our thoughts; and our efforts in advocacy are, at best, ignored.

It’s worth it, though, because there are those lovely, curious people, who are very interested in understanding. These allies realize there is still so much to learn about nonspeaking autism, and ask how they can help.  Furthermore, they read the research we recommend. With new information, they reframe their understanding, and help spread the knowledge which will lead to nonspeaking autistics’ inclusion in society.  This is why I advocate…and I couldn’t do so without these fantastic allies. Honestly, I couldn’t be more grateful.