They Don’t Care About What We Say

Remember a few years back when the Temple Grandin movie came out? The part that really sticks out for me was at the end of the film. When Temple stood up at the conference and told the room that she was Autistic. All of the parents and professionals were so excited and practically begging to hear her voice. Maybe it was different for Temple Grandin. Maybe they added that part for dramatic effect. Maybe that particular autism conference took place in an alternate reality….like Bizzarro World. Because in the real world, nobody cares about what we have to say.

As a parent of an Autistic child, I am usually seen as an “authority” on autism. That is, until I also disclose my own diagnosis. I am Autistic too, and the things I have to say often conflict with what people think they know about autism. I know that I am not alone. Even Autistic people are not alone. I have seen other Disabled activists entirely dismissed when bringing up issues of accessibility or the problematic things that our “helpers” (parents, professionals, etc.) do in our best interest.

Everyone loves a “self advocate” when we are validating the things they do for Disabled people. But that seems to shift dramatically in that nobody likes it when we point out the flaws in their thinking or in their approaches.

I have worked in my local community with various disability advocacy organizations. First as a parent, then when I felt brave enough to “come out” and disclose that I too, was Autistic, as a self advocate. Sometimes, I wish I could go back. Knowing what I know now, that I would be dismissed and humiliated on multiple occasions because I care more about the rights of Disabled people than how we make other people feel. If I could go back, sometimes I wonder how open I would be.

Don’t get me wrong. I am extremely proud of being Autistic and Disabled. I am proud of who I am, and who my child is. I love my Autistic community more than I think I can express with words.

I just wonder sometimes if I could do more to actually help our cause, had I continued to try to “pass”.

I recall a meeting with my local school district. We were meeting to discuss “Autism Awareness” and possible activities for the month of April. I was the ONLY Autistic person in attendance. There were parents, special education teachers and administrators. Had I not been a parent, I would not have been invited. No one thinks to include Autistic people in these conversations.

One of the teachers mentioned possibly doing a fundraising walk for Autism Speaks.
I said “I can’t be involved in anything like that, Autism Speaks is not a good organization, they do harm to Autistic people….”

And a parent cut me off.

“Yeah, some people don’t like them…”

The administrator asked me for more information, but every time I tried to talk a parent cut me off and accused me of “derailing” their efforts to host an “awareness” event.

This is why I think “awareness” is lazy.

If you want to do something to help Autistic people, if you want to attach your name to an event that is supposed to be ABOUT US, you better make sure that you are supporting us in respectful and meaningful ways. Do your research. Many Autistics feel that Autism Speaks is a hate group. You don’t dismiss my concerns as an Autistic person whose dignity and humanity is constantly in question by saying “yeah, some people don’t like them.” It is so much more than that and if you can’t see it, it’s because your privilege isn’t forcing you to confront it. Autistic people don’t have that luxury.

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There was another time, a meeting for a community (disability related) organization where we discussed how to make community meetings more widely attended. A woman in attendance had mentioned that the facility was not wheelchair accessible. She was humiliated on multiple occasions trying to access the space. So, there was a “discussion” about whether or not another space should be chosen. To me, there should be no discussion. A space is inaccessible, and you are being informed of this, you find another space that is accessible. That’s what you do if you value “self advocates” who are participating. You don’t discuss whether or not it matters. Because being included, making sure that everyone is able to participate is non negotiable. It’s not an option to be “discussed”.

Is the space wheelchair accessible?

Is the space sensory friendly?

Is the space close to public transportation?

Is the lighting/noise level Autistic friendly?

None of these things were true about that space. All of these points were brought up.

Guess where the meetings are still being held?

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I recall another incident where there was a conflict about the word “acceptance”. Apparently, that was too radical a thing for people to understand. As I stated before, I think awareness is lazy, it requires no action. So, yes, I made an issue of the words when discussing yet ANOTHER April event where I tried to work WITH local advocacy organizations and parents. I was told that I was making a big deal out of nothing. I tried to explain why awareness harms Autistic people, how it is done for show, but there is no meaning behind it. How what we need is for people to accept and include us, because they are already aware of us and look where that has got us.

A parent threw her hands up in the air and just sighed loudly “Awareness, acceptance, it’s the SAME THING!”

No, it’s not. But when I tried to explain, I was ignored, dismissed. How should I know what I’m talking about? I’m just actually Autistic and live with the consequences of “autism awareness” every day.

These situations are just a few that I was able to participate in, since being “out” about being Autistic, I have found that unlike other non Autistic parents in my area, I am often overlooked or flat out ignored. It gets to be truly humiliating when you are never asked to participate or feel that your involvement in your community is unwelcome. The message I get over and over again is that my civil rights matter less than the feelings and egos of parents and professionals. The way you treat Autistic adults now is the example you are setting. The world is watching, and that is how they will treat your children someday.

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When I pulled my child out of school because they refused to include him, I was “too biased to understand” that an ABA based classroom was in his best interest. I spoiled him, you see. He needed compliance training and behavior management. Even at the cost of his dignity and humanity. They told me that I don’t know how his brain works like they do, because they are behaviorists and professionals who know about special education and I am just a radical whose brain is flawed just like his.

Our school district lied to me on many occasions. The biggest lie was when they told me that special education was a service, not a place, yet there are segregated classrooms in every school in this district. That is where they put the children with disabilities. They think including them is too hard because they are too focused on managing “behaviors” without understanding that behaviors always serve a purpose. Even when they are weird. Even when they are Autistic.

They could not force my child to act normal. They could not force him to be compliant. He, unlike me, has very little passing privilege and god damn it, I have never been more proud of him. He is authentic and Autistic and he doesn’t know the shame of being forced to act normal. With every flap, with every verbal stim, with everything he does he is honest and openly himself.

But these things were seen as bad. I was told that I didn’t understand how hard it would be for him to navigate this world without ABA, without being forced to talk even when he would rather use AAC. Even when these professionals knew I was also Autistic, they literally told me that I would not know how hard his life would be.

I know how hard his life will be, but it’s not because of autism. His life will always be harder because of ableism. Because we say we love the concept of self advocacy, while forcing compliance and indistinguishability. We say we love to hear what Autistic people have to say, but only when they are echoing back their own internalized ableism. We say we encourage independence and speaking for oneself, until it conflicts with what we think we know about autism and disability.

I have a hard time with organizations and individuals that say they want to make the world better for me, for my kid, for other Autistic people in one breath, while placing more barriers in our way with the next. I want the world to be better for my son. I imagine that most parents want better for their Autistic children too. It will start by actually listening to Autistic people even when it’s hard to hear. Even when it makes you uncomfortable.

Image: Light green text reads ” The message I get over and over again is that my civil rights matter less than the feelings and egos of parents and professionals. The way you treat Autistic adults now is the example you are setting. The world is watching, and that is how they will treat your children someday.” Text is on dark green/black textured background.