Non-speaking Autistic Activist Responds to Suzanne Wright of Autism Speaks

She starts the article by asking what we would do if three million children went missing or felt gravelly ill; she says we would use every national resource. She also says that:

“we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.”

What she is referring to the “crisis of autism.”

And there start the lies.

In the best A$ way of spinning the “news”, she talks about autism as a disease, which is a lie; she says we are lost.

So, here I am, not lost, not ill, all grown up and speaking up.

The “crises” is a fabricated one, made up by A$.

The only ones who lost touch with the three million children are the leaders at A$. They don’t see autistics as human beings and they refuse to acknowledge that we grow up and thrive, given the proper resources and if treated with respect. A$ lost touch with autistics because they deny the diversity of the autism spectrum and they deny that even the ones they call “severe” can contribute and lead fulfilling lives. If they looked at me, they would say I am hopeless. Yet, I live a great and proud Autistic life. At the same time, they deny that some Autistics are “real” Autistics because they have hidden disabilities. To them, Autistics cannot thrive, and when they thrive they cannot be Autistics.

Ms. Wright then tells us that families of autistic children are not living. She misrepresents every parent by implying that their autistic children are nothing but a burden, sucking life out of parents that will certainly split up. As a grandmother she seems to have, strangely, forgotten how childhood is, sometimes hyperactive, sometimes boisterous. Kids will be kids, autistic or not.

Then this:

“Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.”

This is very hurtful to me. My parents did not anticipate my next move anymore they did anticipate my next achievement. They did not despair because I am Autistic. They fought for me and became my advocates, like most parents do. And they feared for my future as much as my aunt feared for the future of my neurotypical cousin. It is called “being a parent.”

That statement was offensive, demonizing, dehumanizing.

Every life is lived moment to moment. And life is full of good moments too.

I am sure every parent cherishes the beautiful moments of their children, autistic or not. Challenges are not the same as despair. The “despair” is only there if they believe the lies Ms. Wright’s organization spreads. We are not the cause of it and this kind of speech and propaganda is what puts our lives in danger: parents who blame everything on autism and their autistic children see only a bleak future and maybe they will see only one devastating, dangerous and criminal solution.

Yes, A$, I am holding your propaganda partially responsible for criminal acts committed against autistic children and adults, by parents who believed the future was one of despair and tragedy. By parents who devalued their children.

There are resources for parents and a whole community of autistic adults who have been eager to help, speaking up and writing about our autistic lives. We have been there; we are like your child.

Ms. Wright sinks further down by saying that the sun rarely shines for parents of autistic children. And she lies again by saying that “70 million parents around the world” have to deal with seizures, bedwetting, school districts fights, financial problems. But every parent will deal with some of this.

Seizures are not autism.

She says:

“Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help”

She talks about me there. Ms. Wright, I challenge you to meet me. Let’s talk. I want you to look at me and say I am not happy, that I cannot be happy and proud. I want you to tell me, and my father, that I am a burden. I want you to tell me, to my face, that I am “lost”. But I also want you to listen. Listen to my typed words and let me invite some of my friends, the ones who are a lot like me, so they can also tell you about their fulfilling lives. Stop ignoring me because I am here, I am living, my family is proud of me. Just the other day I was partying with my community and our allies, supported and acknowledged, even admired, by people who see me for who I am. More than deficits. I do have deficits. But I AM a lot more and I show it every day.

THIS is Autism

According to Ms. Wright, someone should be building a city for “500,000 autistics”. We are a “monumental health crises”.

We are not a health crises and the last thing we need is a city where we can all live in, segregated. Is that her idea of a “national plan”? Autistics segregated in special cities, receiving “treatments” to make us look acceptable to the non-autistics? Or maybe electric shocks, since A$ endorses the Judge Rotenberg Center “therapy” (the UN and reasonable people call it torture).

There is more. Suzanne Wright pulls up a fake number that supposedly is the cost of “caring” for us. She ignores several facts:

Disability is a natural part of the human life. Some will need more help and yes, this costs money. But not the figure she gave and not only autism.

She ignores the many autistics who are tax payers, and many more who could be, if more employers were not flooded with misinformation and fear, like the ones propagated by A$.

How about that for a “national plan”: Stop the fear mongering, employ an autistic. A$ could lead the way. They are big, they could give us jobs, they could use their raised money to educate law enforcement, to help non-speaking autistics like me have access to assistive technology. We could have talked about these ideas if we had been invited to the Summit Ms. Wright’s organization had in Washington, DC. Instead, we were ignored, because A$ doesn’t really want to create a “National Plan”. They want to make sure their research moves forward and that autistic births can be prevented.

Ms. Wright should be drafting an apology to me, to my autistic friends, to every autistic person and their families.

Maybe she should begin by apologizing to her grandson. I recently lost my grandmother and I miss her love. She loved me during my meltdowns, through my developmental delays. She always talked to me like one talks to a human being. More importantly, she never diminished me or talked about me as a burden, even during my sleepless, difficult nights and days.

  • Ms. Wright’s words are vicious and hateful.
  • They add to the stigma
  • They do not offer help to families
  • They don’t contribute with positive ideas
  • They dehumanize autistics
  • They endanger our safety

And she wants people to believe she cares?

You need to do better, Suzanne Wright. Apologize, recognize we are human, talk to us.

Don’t completely lose your humanity.

Here is my original comment on the Autism Speaks website:

“Your words hurt me. I am an Autistic adult, yes, I have epilepsy, but this is not autism; yes I have GI problems, but this is not Autism. My family is living, happily and proud of me. I am non-speaking and I am living. I am not lost. The difference is that you cannot love autistics for who they are, so you attack us. Why did you create an organization that spread fear of and hate for autistics? Why don’t you talk to us, or better, listen to us? Your words are full of viciousness. My family sees the sun shine and they see me. They encourage me to be the best I can be and I learn every day. I cannot eat by myself, dress myself, I am not safe by myself but I have plans and I will have a future because my community has my back. 
I feel sorry for your grandson. I cannot imagine my grandmother demonizing me the way you demonize him. 
I hope you apologize, at least to him. He hears you, you know? The same way we do, and he will, one day, let you know how much you hurt him.
The only fear we autistics have is of people like you using this hateful power to get rid of us. Because you cannot “end” autism without ending us”

 

About the Author, Amy Sequenzia.

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