On Being Part of F'd Up Communities


Sometimes an obscene situation requires obscene language.

Sometimes an obscene situation requires obscene language.

 

Yesterday I posted the following to the thAutcast Facebook page, with a link to this article:

1. Kelli Stapleton tried to kill her daughter. She admits it. She will get off with a plea to first-degree child abuse because autistic people like her daughter are not valued adequately.
2. MANY of Kelli's friends attacked me in the monthsbefore this attempted murder happened because I said that we need to be aware of the possibility of autistic people being abused by their parents and care givers. Although many of those people commented with enthusiasm when I expressed my opinion that this crime was not a hate crime, NOT ONE has apologized to me for attacking me for trying to get them to see that people like their friend Kelli exist. Not one.
3. Anyone who expresses sympathy for Kelli Stapleton today is an asshole who will be banned form here immediately.
4. The autism parent community is fucked up and horrible to autistic people. Get your acts together. Stop telling each other it is understandable if you kill your kids.
5. This is not justice.

Very unsurprisingly, reaction to the post focused on point number 4.

I offer these points of clarification.

 

1.  There is a difference between criticizing a community and personally insulting all of the individuals who are a part of it.

Many people read this as me saying that all parents of autistic kids are fucked up and horrible. This is not what I said. A community is a group of people with shared experiences and values.

What I am attacking here is this specific set of values within the autism parent community:

  • Believing that parenting a child with autism is so hard that no one should ever criticize someone who is doing it, even if they abuse or kill their kids.
  • Blaming the deaths of autistic people on a lack of support and services rather than on the people who killed them.
  • Advocating for killers rather than their victims

These absolutely are part of the shared values of the autism parent community. If you doubt that, read the comments whenever a case like this is discussed. And these values are fucked up—they devalue my life.

I cannot post about a case like this in any terms without parents saying they understand and the murderer should not be judged. And attacking me very aggressively for not falling in line and saying idiotic things “Yes, this was a tragedy for everyone.” No one can post about cases like this without comments being made that justify murder and call into question the right of autistic people to exist at all. That’s fucked up.

 

2.     Sometimes an obscene situation requires obscene language.

I rarely swear on my Facebook page or here. My choice of language in this case was very deliberate. I needed to use obscene language because it is obscene to call attempted murder child abuse. And because the values I describe above are obscene. If you’re one of the good guys (and I bet you are), please stop tolerating a status quo where the murders of autistic people are routinely excused or used as an opportunity to ask for more services.

It is not unfortunate that people are excusing Kelli Stapleton or sympathizing with her rather than with her daughter. It is obscene. And the people doing that are assholes.

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Autism Speaks Cannot Help People It Refuses to Learn Anything About


You know nothing, Autism Speaks!

 

Today my friend Jess at Diary of a Mom makes public the story that tells you everything you need to know about Autism Speaks.

It's a story about Suzanne Wright, who founded the organization Autism Speaks with her husband Bob.

And who knows nothing about autism.

Suzanne Wright is the visitor in this story. The one who does not know not to touch an autistic girl's face. The one who ignores the child who tells her she hates it.

Someone walks over to our step to say hello. She bends at the waist, looming over Brooke.

Brooke doesn’t look up. She doesn’t stop stripping her stick.

Dig. Pull. Dig. Pull.

Our visitor reaches out a hand and cups it below Brooke’s chin.

I freeze. Oh God.

She uses the hand to pull Brooke’s head up by the jaw.

A thin line of panic starts somewhere deep. I know that Brooke is going to scream. 5,4,3,2 …

She does scream, but not in the way that I expect.

“I HATE BEING TOUCHED!!” she shouts.

I am flabbergasted.

Words. Self-awareness. Communication. Self-advocacy.

I know the sentence will need to be reformatted. But I am drenched in pride.

I turn to Brooke. “Great job telling us how you feel, Brooke. Really great job.” I hope that my words send a message to both of them. I stand with my girl.

Our visitor is undaunted.

“I just want to see that beautiful face,” she says. “Lift up for me.”

I am stymied by etiquette. By deference to our host. By generational difference. By convention.

Brooke is not.

She lifts her head as instructed. And growls.

 

Autism Speaks is willfully ignorant of the people they claim to serve.

We tell them that the way they talk about us hurts us. I started this site in 2009 to protest their video "I Am Autism." Because of Jess, I have talked directly with Autism Speaks president Liz Feld, who listened very nicely. We have told them it damages us when they tell people that we are a tragedy or a tsunami or a crisis. They pretend to care. People pretend they are changing.

 

They will not change.

They cannot change.

 

This is Suzanne Wright, writing about the Autism Speaks to Washington forum happening this week:

This week is the week America will fully wake up to the autism crisis.

If three million children in America one day went missing – what would we as a country do?

If three million children in America one morning fell gravely ill – what would we as a country do?

We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.

We’d leave no stone unturned.

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

We’ve let families split up, go broke and struggle through their days and years.

 

This is the same rhetoric that launched Autism Speaks with the hideous "Autism Every Day."

 

Autism Speaks is controlled by a person who does not know not to touch an autistic child's face. Who will not listen to an autistic child who tells her not to touch her.

And, honestly, that is all you need to know about Autism Speaks.

 

Paradoxes of Autistic Communication

Published in

 

Autistic people struggle and work and suffer to find and use our own voices.
And then are often left to feel that no one cares what we have to say.

In order for me to express myself, I am constantly working against both disability and difference.

Even for highly verbal people such as myself, autism is a social and communicative disability. Adults like myself are expected to have complex sets of skills and abilities for building and maintaining relationships that my brain simply cannot develop. I can often simulate them by working very hard, but that’s not the same.

Communication is painful for me in ways that I have mostly learned to hide. This hiding is not entirely a good thing because other people often cannot tell how hard I am struggling, which causes them to have unrealistic expectations for me. In order to hide my differences, I have to pretend to be interested in and care about the same things as the people around me. I have to act out emotions that people expect me to share in order to make them feel comfortable. I have to pretend to be someone other than who I am.

Working against my own emotional life is frustrating. It means that I am often playing games with rules I cannot understand completely or follow well, and that do not satisfy me even when I win.

Click here to continue.

My Name Is Landon and I Am Autistic

Published in

My name is Landon and I am Autistic

I am or have been many other things, too:

A son
A teacher
A husband
A writer
An artist

But my autism is part of all of these things.

 

My autism is not the most important part of me
But it is a part of everything I am
Because it is a part of how I interact with everything

Because I am Autistic--

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Siblings and "I Love Being My Own Autistic Self"


"I know you're autistic but I like you anyway."
"And I like you, even though I know you aren't."

 

Lou Melgarejo from Lou's Land sent this note about his family and my book I Love Being My Own Autistic Self:

I often think of your book being read to autistic kids. I bought it for Bianca and I read it to her, but what I didn't think of for some inexplicable reason is the effect your book has had on Bianca's two NT siblings.

Today, while browsing Facebook somebody sharing your latest post appeared on my timeline. My 3 year old son saw that the thumbnail of Vector's smiling face and he said, "HEY! That is the book that Bianca reads!" I never thought about it, but Luis and Sofie were getting a peripheral education by being around when I read your book aloud.

I asked him if he liked the book and he told me that he did. So we read it together and it took on a different meaning for me.

I know that he is loving and accepting of his sister. I also know that your book will make him a better brother, a more tolerant and accepting person, and a defender of empathy and compassion.

Thanks for that!

 

Thanks to Lou, and everyone who has shared my book with their kids-- NT, autistic, or otherwise.

Buy for Kindle here.

Buy paperback here.

 

 
 
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