Listen for Unspoken Voices: Our nonspeaking views much be valued

What is autistic representation? It is a question I have asked myself seriously in the past months. I have watched Love on the Spectrum and a bit of Atypical, and it left me feeling down. I was initially thrilled to see autism featured on mainstream television shows. But they were not telling the reality of my autistic experience. It is an odd feeling to be “represented” without actually being represented!

I am a minimally-speaking, apraxic autistic man. What it all boils down to is I cannot easily sync my mind and body. I struggle to communicate. I have compulsions that drive me to distraction and complicate most aspects of my life. I went 30 years without being able to communicate my deep thoughts. I am only now realizing the magnitude of my potential lost through years of being presumed incompetent. It is devastating. Yet I am also full of hope.

I am starting to delve into the world of autistic advocacy. I have a lot to learn! Yet I do have some initial observations. I hope they are not taken as ignorant criticisms. It is merely my perspective that I wish to share.

Now I know more about the different stances on autism. It is exciting to know about ASAN and other organizations advocating for us autistics. It is a mighty fight, and I appreciate them so much! It is a wonderful cause led by strong people.

Yet I feel that non-speaking voices are buried among all the speaking voices. In the discussions I have watched online[1],[2], I learned of the multi-faceted world of autistic advocacy. It seems that speaking autistics dominate the discussion. What would seem natural to them is worlds apart from my experience. The non-speaking autistics’ perspectives are vastly different from the prevailing narratives of autistic lives.

One issue that caught my attention was the offense taken at the notion of autism as a condition to be cured. It seems to be interpreted as the same as condemning autistic gifts. I take it in a completely different way. For me, my autism is a profound gift, but also an awful prison. It is a trapped experience. It prevents me from communicating easily, from being able to control harmful compulsions, from enjoying my brilliant potential.

I am an autistic who is desperate for a cure to the devastating sides of autism. It does not mean that I hate all of my condition. It means I want a better chance to function productively and meaningfully in this world’s reality. It is a condition that can only be mitigated to a certain extent by acceptance and accommodation. I am still autistic if my difficulties are treated or cured.

With respect to my speaking fellow spectrum denizens, you have no idea what my non-speaking life has been like. It took 30 years before my family learned it was possible to connect with my rich and silent mind. I watched my beloved father slowly die without being able to talk with him. I experienced years wasted in glorified babysitting services disguised as special education. I am autistic like you, but also profoundly unlike you.

It is a cruel struggle even now that I can communicate. My compulsions block my progress in almost every arena. They are physical and psychological in origin. They drain my family’s energy and warp my actions. They doom me to sleepless nights. They put me at risk of police brutality. They make it hard to imagine a truly autonomous future.

Yes, my mind is beautiful and bright. I am proud to be autistic. Yet I wish there were a treatment for the horrible aspects of my non-speaking, apraxic autism. That is a fully reasonable stance to take, and not difficult to understand.

I am wishing that this rich view of my type of autism would be more prevalent. I am wishing I could have more role models and mentors like me. What autistics need is representation of the whole spectrum. Over 40% of us are non-speaking[3]. Over 60% of us have some form of apraxia[4]. Where are our voices in activism and media representation of autistics?

There are some amazing accounts of non-speaking experiences. The book The Reason I Jump is the most well-known, I think. It was revolutionary! And there are several others in book, blog, and video form. With the recently created movie The Reason I Jump (not a direct adaptation of the book), I saw a gorgeous rendering of my type of autism. With these shared stories, there should be more widespread recognition of our perspectives.

Yet this publishing and releasing is clearly not enough. What we non-speaking autistics must do is get our unspoken voices heard. With communication aids like the letterboard or keyboard or whatever works for you, we should clamor for our rights. We should advocate for ourselves. We should make our experiences part of the mainstream autistic narrative. We are so lucky to have admirable advocates among us (like Amy Sequenzia, Ben McGann, Cal Montgomery, Hari Srinivasan, DJ Savarese) and the Spellers & Allies Advocacy Network. I am mainly proud of my non-speaking peers. But we need to fight more to be listened to.

With all the challenges we autistics face, we would be stronger and more inclusive if we listened to each other across our spectrum. What this would mean is helping those of us who struggle to speak to amplify our voices. I hope this is taken kindly, as it is meant kindly.

[1] https://youtu.be/AFzu1zIN540

[2] https://youtu.be/ymBrXK6SXfY

[3] https://www.autismspeaks.org/autism-statistics

[4] https://pubmed.ncbi.nlm.nih.gov/26114615/

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