John Elder Robison, the autistic person on the science board of Autism Speaks and one of three autistic men on the Interagency Autism Coordinating Committee, begins his big picture consideration of where the autism community is and where it needs to go in a familiar place-- anger:
What have we done for our community? Angrydirect that question at the IACC, the CDC, NIH and Speaks every day. They say we’ve spent hundreds of millions in research, and talked about all our great accomplishments in research, yet the lives of the autistic people around them are not one bit better. How come?
I’m beginning my seventh year as an autism advocate – whatever that means – and one thing that’s clear is that the dissatisfaction expressed by members of our community is just getting louder. The inescapable conclusion is that the organizations that purport to be here to help are not delivering whatever it is we want or need.
I want to respond to John Elder's piece in some depth soon, but first I want you to read his arguments without my comments on them, because what he has to say is smart and important. There's a lot I agree with and a lot I disagree with, even in his final summary and call to action:
1 – We have developed a number of promising therapies – some medical, some behavioral, some environmental – that seem to offer meaningful help to certain autistic people.
2 – We see the promise of new technologies like tablet computing/apps but we’ve left most development in the hands of private companies, which leaves the resultant products unaffordable as things stand today.
3 – History shows that some of the greatest discoveries come from basic research and I believe we must continue in that direction. At the same time, we can’t overlook the needs of people today.
4 – The reason most new therapies are not covered by insurance is that there is not a strong body of evidence that they work, nor are there standards for how they will be delivered. Consequently, insurers wriggle off the hook saying they don’t know what they’re paying for, or if it will work. That’s why there’s such a critical need to fund studies that build evidence, and develop standards for delivery.
5 – Changing the way our education, legal, and social systems accept, engage, and help autistic people is going to be a massive and expensive effort; one that is just now beginning. It’s even more critical as we begin to understand the true size of the autism community (including the large numbers of previously undiagnosed or misdiagnosed adults.)
Please read it and think about it.
Then let's talk.
Brent Mack, a 27-year-old autistic man from Perth, Australia, has been sentenced to twenty years in prison for killing his mother, Ah Bee Mack. Her body has never been found. Brent claims she killed herself, and he hid the body because he promised to keep the suicide a secret.
Justice John McKechnie found Mack had killed his mother to benefit financially from the lucrative real estate assets she had inherited only months before her death from her late husband.
After his mother's death, Mack moved almost immediately to start siphoning hundreds of thousands of dollars out of her accounts.
Mack kept his head bowed and eyes closed through his sentencing in the Supreme Court of WA on Friday.
Psychological and psychiatric assessments of Mack had ruled out his autism as a factor in the murder.
"Your autism does not explain your crime let alone excuse it," Justice McKechnie said.
But he did find Mack had lived a solitary and sombre life due to his condition, that he had been the target of abuse from his elderly father and incapable of forming relationships.
"You are a very damaged young man," Justice McKechnie said.
So there's this thing that happens?
Where an autistic person will say or do something dumb or thoughtless?
And then we're all supposed to decide not to like them anymore?
Let's try not to do that.
Let's remember that autism impairs communication and socialization, pretty much always.
So-- those big famous autistic people who speak so well and write so movingly?
Still are likelier to mess up and say something wildly off-key than our neurotypical heroes are.
And we have to remember that,
In order not to make some faction of Autismland hate you with what you say or do,
You have to walk such a complicated network of tightropes that sooner or later you're going to fall.
And if you talk publicly about autism, you're going to be spectacularly wrong from time to time.
No matter how smart or good-hearted you are.
No matter how autistic you are.
Because autism is hard.
when I read that someone autistic who I admire is working with a celebrity who says dangerous things
Or a charity whose work I oppose
Or has made insensitive comments about gender
Or about "functional levels"
Or what have you
I try to say-- "Oh, autistic people are just like everyone else.
Imperfect, and frustrating and
Different From Me."
Why do I try harder to do this with autistic people than with most other people?
Because they have social and communicative challenges that most other people don't.
Because they are My People.
Because I know that probably not enough other people are trying to understand and keep empathy
When people get autistic, not in a nice way.
It's not my job to be Fair.
It's my job to promote the rights of autistic people.
One of those rights
Is the right to disagree.
Even with me.
"I think this kid's cool. I think I'm like him."
My friend Adam Bailey wrote this, in part because I asked him to. He's the guy who does the OWL comic strip, and he did the music for this cartoon we made together based on it. Adam has Asperger's syndrome. He works full-time repairing things. His wife and he have two sons, Colin, who just turned six, and Brendan, who is four. Colin has the sort of autism that makes life very difficult for himself and his family. Brendan is not autistic. When his mother recently asked Brendan what autism is, he replied, "when you need help to play."
Colin at Six
by Adam Bailey
One of my primary metaphors for the autism community is the LGBT community. And, by the way, my choice not to include other letters there is deliberate, and I will not appreciate being corrected for it. Because I'm talking about history, and history is specific.
It's hard for parents of autistic people to understand that they have power that we do not, because they are themselves a disenfranchised community. How can we say that you have all the power when you are powerless to affect the changes you really need?
Well, there is power, and there is power.
And I think it might help a little bit to think about the differences between the power that the people represented by the letters L,G, B, and T have.
I'm a gay, white, man who lives in California. There are powerful organizations like the Human Rights Campaign who are going to make sure that my interests are not ignored. If I were a trans woman of color who lived in Arkansas, who would be looking out for me? Me and my friends, that's who.
There are gay men who are taken seriously, like Nate Silver. There's a lesbian in the Senate. The L and the G are doing a lot better than the T, even though we aren't doing okay. The appearance of trans people on television or in sports can still give rise to shameless and outrageously bigoted reactions. Trans teens are less safe than gay teens, and gay teens are not safe. This segment of The Melissa Harris-Perry Show was unusual for showing real trans people in a substantial conversation on TV. I can see a gay guy talking about gay stuff on MSNBC every week. I can see a lesbian tell me the news every night.
I have the HRC behind me. I get heard in ways that transgendered people don't. I hate that. Actually, I don't like the HRC. I wish their top priorities were passing laws that made it illegal to discriminate against LGBT people in hiring or housing and getting LGBT people appointed to political positions. Instead, their top goals have been marriage equality and the repeals of Don't Ask Don't Tell. Those are good things, but they won't save as many lives as making it illegal to deny homes and work to trans `people and gay people in the states where that is still legal (most of them).
Do I have equality as a gay man? No.
Does this piss me off? Yes.
Do I have tremendous privilege, in comparison to trans people, especially if they aren't white, especially if they don't live in very blue states? Of course.
Is that my fault? No.
The parents of people with autism are represented by Autism Speaks and other powerful organizations. Parents may disagree with what Autism Speaks or the Autism Science Foundation do, they may cringe at some of the statements made by their leaders, but Autism Speaks is almost always going to get a seat at the table if they ask for one, just like the Human Rights Campaign. The HRC is never going to have a board made up mostly of B's and T's, just like the Autism Speaks board is never going to favor the interests of autistic people over the interests of our parents.
And in some ways this is fair and right. Gay people built the Human Rights Campaign and have contributed most of the money that makes it strong. Parents founded Autism Speaks and have paid to make it as powerful as it is. It's not wrong to have this power.
We just have to acknowledge it.
I don't think the organizations run by autistic people have a combined annual budget of $2 million dollars. Autism Speaks alone reported income of over $50 million and assets of over $20 million of 2010.
There's just no comparison.
And it's okay that it makes me angry that the parents of autistic people have something like 100 times the power that autistic people do. This should make me angry, it's an unhealthy state of affairs.
Just like it's right for transgendered people to be frustrated that gay people have power that they do not.
And in each case, some members of the more powerful minority group buy in to the majority prejudices against the less powerful minority group. Christian Siriano, Dan Savage, and Ryan Murphy are all white gay men who have wounded the transgender community with unthinking bigotry. Murphy and Savage have both also done wonderful things for transgendered people.
Many parent advocates for autistic people have sometimes acted with unthinking bigotry toward autistic people. Several of those same people have also done wonderful things for us.
It's good for trans people to praise Ryan Murphy when he gets things right and complain when he gets things wrong.
It's good for me to do the same for parent advocates.
One place where both autistic adults and trans people still have to fight that gay people and the parents of autistic kids don't have to is get acknowledgement that we even exist. My friend Jay Jackson told me this story:
I look young and was going to play a teenage patient for the local hospital's "simulation day", where they would run medical simulations to test out their new pediatric ER. Once they found out I was transgender though, they asked me not to play a patient because "it is very unlikely that a young person would be transgender".
Even the MEDICAL COMMUNITY is grossly misinformed about transgender issues and it causes a lot of hurt.
I can imagine an adult with Asperger's syndrome being turned away for the same reason. I would not be as a gay man-- although someone might find an excuse to get rid of me for being gay, they would not tell me to my face that gay people are unusual. They might get rid of the parent of an autistic kid because they think it will be too much trouble to make things work, but they won't doubt your existence. That still happens to autistic adults. It still happens to trans people.
There is power, and there is power.