I want to say that I speak for myself concerning my neurology and how I communicate. 

I want to say that if you want to show the benefits of AAC, you should ask AAC users and not their parents or self-important “experts”. 

I want to say that you might have chosen to forget that AAC gives me a voice you cannot ignore but I will not be silenced. 

I want to say that, once again, you are wrong. AAC does not make me look more “normal”. I am not your definition of normal. I don’t want to be what you call normal. I am, and will always be, a proud Autistic, very distinguishable from my peers.

Recently I made a video about not being able to talk at times. I made the video when I was completely unable to talk. The reason for making the video was to show people, by which I was mostly assuming non-autistic people, what not-speaking might be and look like (not assuming all people are the same when they are not speaking). I was surprised by the number of views I got both on my blog and on the YouTube posting; close to 5000 and still coming in. I was originally thinking that it would be just “Oh yeah, that’s like me,” and not that much interest from Autistic people, but that was not the case. It was quite informative and affirming for me to see comments from Autistic people, a number of whom had not seen other videos or images of what not being able to speak at times is like for some of us. 

Throughout my life I heard comments about how difficult everything would be for me, how I would never be independent, or have an independent life. If I could grow up to live independently, I would prove that my life had value. If the perception was that I would become an adult who could not live independently, that would prove that I was too damaged, that my life would never be fulfilling.

It was said that my future would be very bleak because of the many needs I have, because I communicate in a different way, because I cannot take care of myself.

I have written about how functioning labels are not helpful, how they help perpetuate myths and how labels don’t really tell our stories.

I wrote from the perspective of someone who was labeled “low-functioning”; someone who has been called “retarded,” “too severe,” “without human dignity." 

Some autistics who are labeled “high-functioning” also wrote about how such label is unhelpful in their lives and how their struggles are dismissed, ignored and rarely acknowledged.

Why does it seem like very few people are listening?

Many autistics use the blogosphere to self-advocate. Part of this is a rebuttal to messages that we see as damaging to all autistics. Messages like some articles about the “science” behind studies - like the one stating that autistics are not capable of romantic relationships; messages of pity and fear, propagated by advocacy organizations; the disregard for our lives when one of us is murdered; and the constant talk of a cure. 

Self-advocacy is not easy. It is true that anyone can self-advocate, even through simple actions like saying “no” to another person, or refusing to follow an imposed activity. And that’s why it can be hard to self-advocate. When we say “no”, when we refuse to do something we don’t want to do, we are said to be non-compliant.

That’s especially true for people like me, a non-speaking autistic who needs a lot of assistance with everything. It is also true for some people who live in group-homes or other facilities, where the schedule made by the staff must not be disrupted, and where individual preferences are ignored. This is ableism.

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.

We are putting together three interest surveys: one each for (1) autistic parents who are parenting autistic daughters, neurotypical parents and caregivers parenting daughters with autism (2) autistic women (3) and the professionals that work with us in order to figure out what the community needs, and where their interests are focused.  

(*) This is the first survey in the series. 

We value your input and appreciate you taking the time to share your opinions and suggestions with us. Please follow the link to take the brief 10 question survey. Thank you! http://bit.ly/IKoO4r