Autism Speaks speaks for the 1%.

Once upon a time there were some very wealthy people.  These were people who had climbed to the top of the television industry and were used to controlling pretty much everything around them.  They were very smart, very powerful, and very used to having their way.

And then their children or grandchildren were diagnosed with autism.

And there wasn't a cure. 

There were therapies, fairly effective ones that their children would have access to.  There was little chance that their children would end up relying on public schools or being housed in public facilities. 

But the doctors said that their children would never be normal.

And that was unacceptable.

So they decided that the doctors and scientists and educators must not know what they were doing if they hadn't already had success.  They decided there had to be a cure, and what was needed was a lot of money, a lot of awareness, and a refusal to take no for an answer.

So they started Autism Speaks.

Less than 1% of the population of the United States controls about 40% of our country's wealth.  One of the reasons I support the Occupy movement is because the 1% group keeps taking over things and messing them up. 

The current school reform movement is a movement of the 1%-- among its greatest champions are Bill Gates, who has been the wealthiest person in the world, and Davis Guggenheim, who produced Melrose Place and is married to actress Elizabeth Sue.  These are not people whose kids were needed to attend a failing public school.

And they are people who could not imagine that the people actually working in America's schools might know more about education than they did.  They weren't rich.  They weren't famous.  The idea that they might have anything to contribute to the discussion of how to fix the system they made up?  Laughable!  They were obviously failures, or they wouldn't have working in public schools in the first place, right?  What could they possibly know?

And so the current school reform movement is best illustrated by the career of Atlanta Superintendent of Schools Beverly Hall, who created such pressure to create impossible results that would please her corporate sponsors that many of her principals pressured teachers to cheat on student tests.

I have not enjoyed the canonization of Steve Jobs that has followed his death because he exemplified the imperiousness of the 1%.  Everyone loves the following anecdote, judging form the number of times I've heard and read it:

Steve Jobs told him the new computer was taking ten seconds too long to boot up.

Kenyon said shaving ten seconds off wasn’t worth the effort it would take.

But Jobs cut him off.

He said “If it would save a person’s life, would you shave 10 seconds off the start up time?”

The engineer thought it was a silly question.

Jobs said “If I could show you a way you could save a person’s life, would you do it.”

Jobs was so intense that Kenyon said, he guessed he’d have to find a way.

Jobs started writing numbers.

He said “Okay, we know around 5 million people will be using this computer every day.

We know that 5 million times 10 seconds, every day, is roughly 300 million hours a year.

So we know that by cutting 10 seconds off the startup time, you could save the equivalent of at least a hundred lifetimes a year.”

Larry Kenyon just sat there open mouthed.

He couldn’t argue with it.

He’d never thought of it like that.

He suddenly saw the world of computers from Steve Jobs’ perspective.

 

Many people in the 1% think they have a "reality distortion field."  They think if people just got how important it was, they could bend reality.

I think the people who thought we would be greeted as liberators when we went into Iraq were thinking this way.

I think the current President of the United States is thinking this way he when acts as though his presence itself should be enough to transform Washington.

And I think the founders of Autism Speaks have acted this way.

I don't think working in television gives you a very good idea about how scientists work.  In television, everything ultimately does come down to perception, and you win by convincing the greatest number of people to pay attention to you.  That's the model that Autism Speaks has brought to science, and it doesn't fit there.

There is no reality distortion field in genetics or neuroscience.  You can pretend there is.  You can throw a lot of money at the simplest possible solution-- in this case vaccines, in school reform school size. You can create so much "awareness" that people continue to believe that vaccines cause autism with religious fervor.

But even if you recognize a dead end when you see one, that doesn't change the fact that you are operating with a top-down, results-oriented approach which is wholly inappropriate to medical research.

It would be very nice if rich people could stomp their feet, order scientists to fix it right now, and will a cure for autism into being.

But they can't.

They also can't conceive of a problem that money can't solve.  They recognize that their resources aren't enough to procure a cure, but surely if they can get more money, then a cure will emerge. 

So they go to ordinary, 99% families who have kids with autism and ask them to help.  And those families, who are grateful that someone is talking about autism, do help. 

And in order to get those families to fund the research that they really care about, Autism Speaks need to convince them that they are on their side.

So Autism Speaks does provide them with some genuine help.  They focus it toward when they are most vulnerable, when kids are recently diagnosed.  They support insurance reform, especially if it will benefit potential donors.  And it's perfectly fine to be grateful to them for those things.

But Autism Speaks is not directed toward the needs of families in the 99%.  They want to get money away from them in order to have it serve the interests of people in the 1% who want a cure for autism.  That a cure would benefit those families as well is great, but that's not really the point.

So Autism Speaks is never going to care very much about people in public institutions.  Not only are they not the main constituency, their parents aren't part of it.  Autism Speaks is never going to say much as families who rely on Medicare, Medicaid, and Social Security see resources dry up.  Because those things are drying up in order to lower the taxes of the people Autism Speaks exists to serve.

What to do then?

I think first, just reject the idea that bigger is better.  Make your donations to specific scientists, specific schools, specific people.  Think small. 

Then, stop asking Autism Speaks to get better.  Support The Autism Society of America and make it better instead.  Support ASAN and other small organizations that have adults with autism in critical roles.

Don't think Autism Speaks cares about you or your kid.

Unless you, too, are part of the 1%, they don't.

Remember this?

Michelle Obama doesn't care about fat people.

I'm profoundly disappointed in our First Lady. 

I taught American history for many years and have tremendous respect for the women who have served our country by being married to our presidents.  My favorite is Dolley Madison, who helped to invent our ideal of what an American woman can be: resourceful, brilliant, gracious. 

I understand that as opportunities for women have grown, we tend to see the First Lady as an anachronism rather than as someone who has a crucial role to play in inspiring and setting a tone for the country. 

The tendency has been to give her a Cause, a really boring one that no one will pay attention to.  Then send her around to build Awareness, in whatever the current equivalent of a tasteful little suit with a smart hat and white gloves is.  In other words, what modern First Ladies have mostly done is try to look busy and not make people mad.

The one notable exception to that has been Hillary Clinton, who became such a magnet for vicious criticism that it is not surprising that the First Ladies who followed her have been so tame in their efforts.

I really hoped for more from Michelle Obama.  I hoped she would do more than what Laura Bush had done-- choose a bland Cause and try to stay off TV unless she's waving at something.

But what we got was this:

Now, that's about as safe and boring as possible, right?  So the question is-- was this chosen for the First Lady as something safe and bland to keep her off TV?  Or was it something she actually cared about?

Well, now we know for sure.

Congress recently scrapped new standards for school lunches because of pressure from food lobbyists:

The final version of a spending bill released late Monday would unravel school lunch standards the Agriculture Department proposed earlier this year. These include limiting the use of potatoes on the lunch line, putting new restrictions on sodium and boosting the use of whole grains. The legislation would block or delay all of those efforts.

The bill also would allow tomato paste on pizzas to be counted as a vegetable, as it is now. USDA had wanted to only count a half-cup of tomato paste or more as a vegetable, and a serving of pizza has less than that.

Nutritionists say the whole effort is reminiscent of the Reagan administration’s much-ridiculed attempt 30 years ago to classify ketchup as a vegetable to cut costs. This time around, food companies that produce frozen pizzas for schools, the salt industry and potato growers requested the changes and lobbied Congress.

There has been substantial outrage about this:

Now let's imagine for a moment that the First Lady actually cared about childhood obesity. 

Wouldn't she have done something to try to keep this from happening?

Wouldn't she have called Ellen or The View and gone on TV to tell people about it?

Wouldn't she have asked people to write their Senators Representatives and ask them to vote against it?

Wouldn't she have made it a little difficult for her husband to sign the legislation that allowed the tomato paste on a slice of frozen pizza to count as a full serving of vegetables?

Of course she would.

Where was she instead?

Speaking to the Chamber of Commerce.

And talking to campaign workers for her husband's re-election campaign-- while they were being served pizza:

Young campaign workers looked up from their pizza at Obama re-election headquarters in Chicago one evening last month to find an unexpected guest: the first lady of the United States, there to deliver a surprise pep talk.

Michelle Obama, who often calls herself the mom in chief, is taking on the new role of motivator in chief.

After nearly three years of limiting her time in the public sphere, she is suddenly ubiquitous: headlining seven fund-raisers in October, promoting new initiatives for veterans and her husband’s stalled jobs bill, even appearing at job fairs run by the U.S. Chamber of Commerce, the business lobbying group that has frequently been a nemesis of her husband’s administration.

 

I think we can say pretty conclusively that Michelle Obama doesn't care about fat people.

Not really.

She's willing to say some nice words about us and be in a couple of videos that show kids exercising and eating carrots, but that's the extent of her interest.  Fat people matter to her if talking about us makes you feel better about her and more likely to vote for her husband. 

The First Lady has very limited power-- really all she can do is talk.  But I think a few words from Michelle Obama could have saved higher standards for school lunches.

So what?

Well, a lot of kids are going to be eating a lot more pizza and french fries.  And getting fatter.  Which will make them die younger and be a huge drain for everyone in terms of health care.

But the Chamber of Commerce didn't get mad.

And those nice kids working to re-elect the President got their vegetables.

What does this have to with autism?

A lot of people I like and respect recognize that Autism Speaks is deeply flawed, but they continue to support it.  They think it can be improved but they believe that it's heart is in the right place.

I don't.

I don't think Autism Speaks cares about autistic people any more than Michelle Obama cares about fat people.  We're a tool for fundraising, and little more, in each case. 

Occupy Autism Speaks

I guess I have not been clear enough about this:

I think Autism Speaks is evil.

I think this for many reasons.  The fact that they hide their eugenic agenda is one.  Their need to publicize negative stereotypes about autistic people is another.  The contempt  with which they treat autistic adults (myself included) is a third.

Today I want to talk about their phony concern-- the pretense that they care about things that they manifestly could not care less about.  Most of the time they just pretended to care about autistic people.  This week they also decided to pretend to care about victims of child abuse.

As an autistic victim of childhood sexual abuse, I want you to know that I find the statement of Autism Speaks co-founders Bob and Susanne Wright regarding the sexual abuse tragedy at Pennsylvania State one of the most disturbingly offensive things I have ever read:

The horribly tragic situation at Penn State University is a sobering reminder of what can happen when the powerless have no voice and powerful institutions have no one holding them accountable.

You know what else is a sobering reminder of that?

The Judge Rotenberg Center.

Am I alone in finding it both bizarre and disgusting that the Wrights feel the need to speak out about a sexual abuse scandal in a football program, but have never felt the need to object to a facility that houses people with autism where two blameless teenagers can be awakened from their sleep to be given a total of over a hundred electric shocks between them?

The system is open to abuse. The school has 29 residential properties in which students sleep at night and, in August 2007, a call came in to one of them to report that two students had misbehaved earlier in the evening and needed to be shocked. It was 2am, but the staff located the two students, aged 16 and 19, and began zapping them in their sleep. The boys awoke and protested that they had done nothing wrong, but the shocks continued. Over a three-hour period, one boy was shocked 77 times, the other 29. It later transpired that the initial call had been a hoax.

The Wrights, and Autism Speaks, have silent about that.  If you search for information about the Judge Rotenberg Center on the Autism Speaks site, you will find one relevant article.  It's about the center's head, Dr. Matthew Israel being forced out of his leadership role there, but it focuses on his defense of his actions.  Apparently, Autism Speaks wants to make Matthew Israel look as good as possible.

But this is what they say about Penn State:

It is the cause and effect result of power dynamics at its most extreme, where institutional dominance is protected over the safety and well being of the most vulnerable; where the most trusted have committed the most serious betrayal.

Now, again, I was sexually abused as a child.  I take this issue about as seriously as possible.  But, no, it is not the most serious betrayal.

The happened to Jawara Henry, a 27-year-old autistic man who was strangled to death by his attendant at the South Beach Psychiatric Center

Autism Speaks said nothing.

Jonathan Carey was a 13-year-old boy who was crushed to death at the Oswald D. Heck Developmental Center.

Autism Speaks has been silent.

Nor have they made a special statement calling for investigation into the Richmond State Supported Living Center (or state facilities in Texas) after David Taylor was beaten and left to die there.

It hurts my soul that autistic people are killed in facilities that are suposed to care for them, and people in general don't care very much. For Autism Speaks to engage themselves more with a football sex abuse scandal rather than any of the tragedies I mention here shocks me.  It illustrates so clearly the extent of their indifference to suffering of autistic people, especially if they are adults, especially if they are poor.

And it hurts my soul as someone who was damaged seriously when I was raped as a young boy to see the Wrights forcing their phony concern at me from that direction, too.

Tommy Hilfiger, Odds and Oddity

Autism Speaks has a bizarre new ad campaign which seems to be making the following point: you are much more likely to be related to someone with autism than you are to be a celebrity like Tommy Hilfiger or Jamie McMurray.  And even celebrities like them can be related to people with autism!  So being related to someone with autism is both normal and cool, so you should learn the signs that will help you see autism in a family member.

It's really well-intended and some of the animation is nice.

But it continues two of the central negative messages that Autism Speaks has always promoted.  First, it suggests that all autistic people are unable to speak for ourselves and need family members to speak for us.  That is true for some people, to varying degrees.  But most autistic people can talk.  Most autistic people are not children.  And it is when we talk, not when neurotypical celebrities do, that autism really speaks, even if those NTs stars have autistic relatives.

Click here to keep reading and see the Jamie McMurray ad.

Lou Melgarejo won the “Speak Out” award from Autism Speaks for this video.

I first saw this video because my best friend sent it to me.

Because he saw himself in it.

He fixes things.  To him, "fix" means "make work."  For him, who has Aspergers, to talk about fixing his son, who is nonverbal, means making the world work for him.  It is love.  It is being a good dad.

That's what the word means to Lou Melgarejo, too.  I get why people like this video. 

But I hate it.  Because of the song.  Because I hate the idea of fixing autistic kids.

Because to me it would mean changing their brains-- I'm a teacher.  I deal in people, not objects.  I don't fix, I coach. 

Anyway, the problem with changing people's brains isn't that it hurts my feelings.  I would love to have people's brains changed in ways that would eliminate or reduce the disabling parts of autism.  Other people sometimes say, "I don't want to be cured!  There's nothing about me that needs to be fixed!"  I do not feel that way.  There are parts of me that I would love to be fixed.

But I know kind of a lot about brains.  I have an M.S. in education, not an M.A.  I got the science degree, even though it was very hard for me, because I wanted to understand and apply educational research well in my teaching.  One of the things I learned is that most educational research is based on such small sample sizes that it is effectively meaningless. 

Unfortunately, the same thing is true of autism research.  This week, headlines told us that autistic people have distinctive facial features, based on a sample of 64 kids with autism, compared to 41 NT kids.  We also learned that people with autism have strangely shaped airways-- based on a sample of 49 kids.

I've taught about 1800 kids in my life, enough to know for sure that a sample of 49 kids might be a promising beginning, but it proves nothing whatsoever.

And that's the kind of crap that gets funded as autism research.  That and genetic/eugenic research.

So I actually think $79 million isn't too little--  it's way too much.

If that money were going to Rosalind Picard, I'd be thrilled.  If it were going to study effective educational methods for people with autism I'd be even happier.

Because we don't know enough yet about how to effectively teach autistic people.  ABA is a beginning, not the end.  And it has no practical use whatsoever for an adolescent or an adult with Aspergers.  We don't know how to effectively teach aspies yet, not reliably, and certainly not in a general education setting.

That's how you change people's brains.  You teach them.  When people learn things, their brains physically change.  The unusual plasticity of the autistic brain makes it possible for many of us to keep learning in a very significant way for our entire lives.  Both Temple Grandin and John Elder Robison have commented on how much more obviously disabled they are in older videos than in more recent ones.  They are as extraordinary as they are in large part because they have found ways to keep learning for their entire lives.

If we were serious about changing things for people with autism, we would creating schools that match the needs of autistic adults.  We have a developmental delay.  Most of us can learn most things if we have enough time and the right methods are used.  Find that time, and a way to pay for it.  Find those methods.  That's what will fix the "autism epidemic."

I believe that the medical model for autism (thinking of it as a disease that needs to be cured) has little merit.  Autism is an identity.  It causes problems that are primarily solved through education, not medical treatment. 

So it's not just that the video makes me feel ooky (I do not like that song, though, it was so creepy on Glee).  I disagree with the way autism is approached as a disease in it.  And when the things you compare autism to are diabetes and AIDS, you are treating it as a disease.  You don't have to come out and call it one. 

I was not surprised that Autism Speaks gave this video an award.