Non-speaking Self Advocate on Communication
A couple of weeks ago someone read my article “Being Happy” and wrote a comment on Facebook. This person seemed to believe that I must want to speak, that I would be much happier if I could speak. I did not read the comment, I only heard about it. I cannot verify the exact words because the comment is not available anymore.
But I can say this: I don’t know if speaking would make me happier; and no, I do not want to speak.
Happiness, at least my happiness today, has to do with things that I have accomplished in my life, especially in this past year. That’s when I became more active in advocacy, when my articles began being published on line, when I became more involved with my autistic community.
The articles I wrote were mostly about how I feel being a non-speaking autistic, how I feel being very disabled and the damaging labels that I am assigned with because of that. The first article brought me a number of friends, and their support encouraged me to keep writing about autism and about my life as an autistic. I am happy today and the fact that I can be so accepted and viewed as equal, despite my many needs, is one big reason why I am so happy.
Maybe I would be very happy and an even more active advocate if I were a speaking autistic. But no one can say that I would experience more happiness. There is no way of knowing that.
One of the most important events in my life happened when I was able to communicate, and communication goes beyond the ability to speak. Another breakthrough happened when I finally found my voice and started typing what I really thought, how I really felt.
The reason why I do not want to speak is because I can’t. Do I wish I could speak? Yes, because some things in my life would probably be easier. If I could speak, maybe people would be more conscious and respectful in my presence, talking to me, instead of about me while I am standing right there; maybe they would listen to me more, since oral responses would be faster than typing; and maybe I could respond to disrespectful comments before the person turned around and left. But I know some of my speaking friends face some of the same disrespectful attitudes and cannot promptly respond or protest either. And I am not talking only about my autistic friends.
The truth is, I cannot speak and I will not mourn this fact. I can communicate and I will fight for my right to be heard.
I believe any approach to communication is a valid one. Speaking, typing, signing, or any other way a person chooses to communicate should be respected. Some people use a combination of two or more methods. For me, communication means making myself understood.
I don’t need to speak because I can communicate. I could never speak but I found a way to show my independent thinking. Why should I mourn my lack of speech when I am, slowly, achieving my goal of being heard and opining on any subject I feel like? It is still difficult, sometimes, to have a conversation through typing. But this says more about the disrespect or lack of understanding of others than about my lack of speech.
I think all methods of communication should be explored, but the lack of speech should not mean that effective communication is not possible, it should not mean that a non-speaking person will experience unhappiness.
I am non-speaking, I am happy and I communicate. I do not want to speak, I want to be respected. The frustration I sometimes feel is not because I cannot speak, it is because people don’t value how I communicate. And, about this, there is nothing that I can do.
About the author, Amy Sequenzia.
Posted in:
- Autistic People
- acceptance
- advocacy
- Amy Sequenzia
- autism
- autism women's network
- autistic
- AWN
- disability
- non-speaking
- non-verbal
- respect
- self advocate
- understanding



Comments
Thank you Amy. I respect you and I appreciate you teaching all of us about respect and value. It is all about how each person with autism chooses to live.
I really like this! I don't have much to add, but I wanted to let you know how much I appreciate your viewpoint. Communication is important. But communication does not have to involve speech. I am not autistic, but I have other disabilities. I have always been a very verbal person, and language is very important to me. Sometimes, these days, I struggle with bringing words to mind, which makes text easier for me than speech, because I can pause to think whenever I need to.
I am also a part-time nanny for a young boy with cerebral palsy, who does not use speech at all. Fortunately, he and I communicate very well through modified sign and body language. I am hoping that as he gets older, he will find the right assistive technology to allow him to explore a much wider and deeper world of thoughts, experiences, and means of self-expression.
I am curious, do you sign? I am taking an ASL class right now, and I find many similarities to the in deaf and autism community. (Undiagnosed Aspie)... Many deaf people have been denied their own personal means of communication for so long, the voice that works for them, or their hands. Have you met any autistics who sign?
I totally agree with you. =)
I also have found many parrallels between the deaf community and the autistic community. I sign to communicate. I speak as well but prefer to sign and only speak with people when necessary. The older I get the more I am demanding that others around me either pass notes with me or they learn to sign too. I realize that I have been accomodating everyone else my whole life because it made them comfortable for me to talk but it really truly isn't the way I communicate best. I have a lot of auditory processing issues and often have trouble communicating this way. So yea I sign and I am so much happier for it. I was not allowed to sign in school (they actually tied my hands behind my back to prevent me from signing) and forced me to learn to speak. I am not deaf or hard of hearing on the hearing tests but I do experience sound differently than most hearing folks I believe. I am not fluent in ASL yet but I am getting closer the longer I sign and the more I sign with deaf people. I would be interested to see if anyone else here signs as well. I met an interpreter the other day who told me I could sign all the time if I wanted to. I told her I wanted to. I didn't want to talk. She said I don't have to. It was really refreshing. We were all signing to one another. A deaf person, a hearing interpreter and a hearing autistic intermediate signer. It was a really beautiful sight. I would challenge anyone to say that this wasn't communication. Or wasn't an ideal way to communicate. It was certainly very effective for us!
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