Nonspeaker Perspectives on Representation

With the help of the International Association of Spelling to Communicate, we asked Nonspeaking Autistic young people what they would like for the world to know about their lived experiences, thoughts, and inner lives.

Here’s what they had to say.

Editor’s note: each person was asked how they would like to self-identify, and those preferences were honored. As a publication, we use identity-first language unless an individual prefers person-first for themselves.

Tejas Rao Sankar, Nonspeaking Autistic

I sometimes waver between thinking that various people in my life have got it and that sometimes they question my intelligence. War on Autism is the first book I’ve read that goes to realize that autism is not a disorder, that we do not need to be saved from this. Thinking of us as intellectually incapable rationalizes the lack of opportunity given to us. The reputation of nonspeaking autistic spellers reveals vast capacity. This forwards you to saving their autistic ways without warring with their autism. 

I want real access and opportunity for autistics who spell to communicate.

Emma Budway, Nonspeaking Autistic

I am a bright and curious young woman passionate about advocacy regarding issues of equity. It pains me that I present as loud and unintelligent. I need people to ignore my stims and chaotic demonstrations. See me differently and I can amaze.

William Tziavaras (he/him/his), Nonspeaking Autistic

What misperceptions would you change about nonspeaking autistics?

There are not a “select few” of us who can think and feel like a neurotypical person of the same age.  All nonspeaking autistics are fully thinking humans. We’re not less, nor are we that different. We are actually more than a neurotypical. We have all they have on the inside, however we have problems with speech and other reliable movement, and people judge actions that we had no control over. As a result, our experiences are unique to us. People, led by the very same so-called experts in our field of autism, believe we are cognitively inferior.  

Thoughts on restraint or seclusion?

…No, I can’t talk about it.  

No one on the spectrum wants to go through reenactment of our worst memories for the entertainment of those that find us pitiful and useless.  

Noah Seback, nonspeaking autistic

I am not an animal. I am not a criminal. I am not a toddler. I am me. I am autistic. I am a nonspeaker. I am not a nonperson. Perhaps my neurology is different, but my humanity is not. Do not treat me inhumanely or oppressively, do not shun me just because I look differently than you, sound differently than you, act differently than you.

Sometimes I wonder why I seek to be accepted by a neurotypical world that would treat me so barbarically, that can’t see past my ‘behavior’ to the beauty of my neurodiversity, that doesn’t even try? Take it from me, someone who has been secluded and restrained: there is another way. Stop the abuse. Stop the trauma. Stop the blatant disregard of our humanity.

Sarah Ackerman, advocate and nonspeaker with autism and apraxia

How do you want to be perceived as a nonspeaking autistic person?

  • I want to be seen as capable and competent.  
  • I want people to know that I am intelligent and need a letterboard to communicate clearly.
  • I want people to know I understand everything that is said to me, and that I am fully capable of making decisions with the support of a trained communication partner.
  • I want people to know I am kind and caring and like being with people.
  • I want people to know I struggle to control my body, and I get stuck in thought loops.
  • I want people to know I love my family and appreciate all they do for me.
  • I want people to know I love going places and checking out new things.

What accommodations do you need?

  • I need people to be patient with me.
  • I need people to know I cannot control my body and struggle to communicate.
  • I need a letterboard and trained communication partner to effectively communicate my knowledge, thoughts, and feelings with people.
  • I need to have support with regulation and a quiet, safe place to relax temporarily.
  • I need love, respect, and kindness.

 What misperceptions would you want to change?

  • I want people to see nonspeakers as perfectly capable of higher thought.
  • I want people to know we are loving and sensitive.
  • I want people to know we are able to understand all that is said to us.
  • I want people to know we have a hard time controlling our bodies and that we have no intention of harming anyone.
  • I want people to know we love being with friends and family.
  • I want people to know we care and want to be treated with respect and kindness.
  • I want people to know we are important and need to be able to access communication in order to be heard.
  • I want people to know we are citizens and have rights.
  • I want people to know we are interested in what is happening around us.
  • I want people to know we are amazing!

What are the issues with seclusion and restraint?

  • I believe seclusion and restraint are being misused.  Individuals who have apraxia cannot control their bodies.They need support and kindness. They do not need restraint!  A quiet place and space is what is needed.  We need to be treated with respect and dignity.

Tiffany Keough, An autism advocate who types to communicate

How do You want to be perceived as a nonspeaking autistic person?

I Am an intelligent person.
I am an amazing person.
I am loving and kind.
I am a person with autism  Not autistic.

What accommodations do you need?

I need a iPad and keyboard.
I need a communication Partner.
I need sensory breaks.
I need time to Type.
I am a great writer.

 What misperceptions would you want to change?

I am a intelligent and lovely woman And a Righteous poet and not r*tarded.
People are so anxious sometimes when I type.

What are the issues with seclusions and restraints?

Restraints are dangerous and seclusions are scary.

Ian Nordling, I-ASC Nonspeaking Leadership Council

How do you want to be perceived as a nonspeaker?

The thing about nonspeakers is we are all different. To try and portray that is deeply personal and complex. The way I want to be perceived may differ from the next nonspeaker, so just like everyone else.

What misperceptions would you want to change?

We are not mascots, life can be extremely challenging for some. We are not violent, or wild, our bodies are responding to our environment, internally and externally. We can reason and respond to logic.

What are issues with seclusion and restraint?

These things are used to discipline when discipline is not necessary. Meltdowns are not tantrums caused by not getting our way. Meltdowns are the result of some trigger that our body decides to respond to. Restraint is abuse and only escalates anxiety. Seclusion only reinforces what society leads us to believe – that we are not wanted.

Danny Whitty, minimally-speaking autistic and apraxic advocate

Here are some of my thoughts!

How do you want to be perceived as a nonspeaking autistic person?

As a person with dignity and rights and valuable perspectives! As a human with very real feelings and experiences. As a person with a beautiful mind and an intelligent brain.

What accommodations do you need?

A letterboard, a CRP, and patience and presumption of competence.

What misperceptions would you want to change?

So many. That I am not worthy of basic respect. That nonspeaking means consent to be mistreated and overlooked. That we are only useful as props in inspirational movies.

What are the issues with seclusion and restraint?

Thankfully, I have very little first hand experience. But I am horrified that many like me are subjected to it. It is inhumane and places very little value on our lives.

Alexandra, non-speaking autistic student

I always prefer to be identified as a non-speaking autistic student. It gives me strength. People think that I am incapable because I can’t speak, but I am here to tell you that isn’t true. Speaking isn’t the only form of communication. It’s simply the easiest. I feel more liberated because I can take the time to think before I share. I may not need a voice, but I have a heart, mind, and soul. I deserve the same chances as everybody else.

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6 Responses

  1. Thank you to each person who contributed to this article – and to those who compiled it. Through your sharing you will change people’s perceptions, attitudes and actions!

  2. I’m so touched by the depth of thought, feeling and sensitivity in all of these contributions – thank you all for educating, inspiring and uplifting us!

  3. Months later to this article being first published, I’m still grateful for it.

    What the Nonspeaking guests above say are things fellow nonspeaking folks have been saying for years, especially about presuming competence. Naoki Higashida in his book, The Reason I Jump, has written about the frustration of being babytalked and given drills when he’s capable of deep thought as much as anyone else. The perceptual mismatch is huge.

    There is a lot of work to do on the subject of basic dignity, thanks to everyone for bringing this up.

    1. (“fellow” in relation to them, that is. Hope that part was clear, i’m not nonspeaking)

  4. Thank you so much for enlightening, motivating, and elevating us with your thoughtful, emotional, and sensitive remarks; I am really moved.

  5. I was relieved to see your improved piece on your site because you have clearly come a long way. The more you write, the more I hope it improves.

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