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.
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.
My name is Landon and I am Autistic
I am or have been many other things, too:
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--
"I know you're autistic but I like you anyway."
"And I like you, even though I know you aren't."
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.
There are many things I do not know about Kelli Stapleton.
I never read her blog until after she was accused of trying to kill her autistic daughter Issy and herself.
I do not know if Kelli Stapleton actually did the things she is accused of.
I don't know if the state of Michigan is right in trying to terminate her parental rights.
I don't know her. I wasn't there. I don't know.
I do not agree that crimes like this should be considered hate crimes. I think, if Kelli tried to kill Issy-- and (it's so important I'll say it again) I don't know if she did-- it had a lot more to do with love than with hate.
Not a hate crime.
But a crime.
I am very worried by the news out of court today, which is that Kelli Stapleton will undergo a mental evaluation to see if she is competent.
If Kelli tried to kill Issy, it was not a hate crime, but it was a real crime.
Issy deserves for her mother to either stand trial for what she is accused of doing to her or to take responsibility for her actions by pleading guilty.
I think if Kelli was physically abused by her daughter, the judge and jury should take that into consideration if she stands trial. She should have a good lawyer, and I have nothing against people who are donating money to try to make sure she does.
But if Kelli tried to kill Issy, she needs either to go to jail or to be committed to a mental facility.
I am scared that there will be no trial.
I am most scared of all Kelli did what she is accused of but will walk free.
That has happened before.
And it would be a crime if it happened again.
And that I know for sure.