This morning, a friend sent me the new Autism Speaks Employment Toolkit.
It's not awful.
It shows real movement in directions that autistic activists, myself included, have been asking for for years:
It is for adults.
It features autistic people telling their own stories.
It is focused on helping, not preventing, autistic people.
Under the leadership of new president Liz Feld, the largest and richest autism charity has moved away from the most damaging things it used to do.
For example, her statement last week on new research showing an autism prevalence of 1 in 50 was far from the overt scaremongering of the recent past:
The good news is that the survey’s “1 in 50” results suggest that increased autism awareness is helping more children get a diagnosis. However, it also shows that many children are going undiagnosed until age 7 or older – years after a reliable diagnosis is possible. We must change this – we know that early intervention helps our children do better in school and lead happier, healthier lives.
We’re also encouraged to see a number of our political leaders respond to the new findings by affirming that autism is a public health crisis needing a national public health response.
We're still a crisis, but a much less terrifying one.
I'm still not a fan of Autism Speaks.
But I no longer feel that it is a crisis.
Should you give them money or volunteer for them?
No, please don't.
Should you keep yelling at your friends and neighbors who do?
No, please don't.
There's a flash blog happening today in response to a recent video that Autism Speaks has put out called "I Want to Say."
Jess at Diary of a Mom links Todd Akin's ignorant comments on "legitimate rape" and abortion to the way that neurotypical "deciders", especially those at Autism Speaks, routinely treat autistic people with no consideration or respect:
Yesterday, President Obama said that Akin’s comments “underscore why we shouldn’t have a bunch of politicians, the majority of whom are men, making health care decisions on behalf of women.”
And that was when it hit me.
Last week, I had a pretty deep conversation with Liz Feld, the President of Autism Speaks. We were talking about the words that we use. About how we discuss autism in the public forum. About how difficult it can be to create a balanced perception of such a broad spectrum. About how we need to fight for help for the disabling aspects of autism while steering clear of demonizing it in order to do that. About how difficult it can be to set research priorities for such a wide array of people.
We had gotten into some of the nitty-gritty. I was explaining why a particular term was problematic and I said that I’d heard self-advocates condemn its use. She asked what they would prefer that we use. She really wanted to know how to better frame it. In context, the question came out, “So what do they want?”
And Jess gets the answer exactly right:
I can’t answer the question because I’m not the one of whom it should be asked. They are.
What they want is representation. What they want is to be included in the decision-making process. What they want is for us to stop asking *each other* what they want.
GRASP publishes a letter from nine-year Autism Speaks volunteer Michele Montanez to new president Liz Feld on why it is important that the organization stop using the word "cure":
For many years, autistics themselves have been fighting to be heard. Their voices are getting louder and louder. We purport to speak for autistics as well as the parents that form our backbone. The vast majority of them, the ones that advocate for true acceptance in our world of autistics as they are instead of as close to neurotypical as we can therapy them into, are emphatically opposed to the word cure. We promote advocacy and acceptance, and yet when the very people we promote advocacy and acceptance define what that means for themselves, we continually ignore it. Ironic for an organization who’s tag line is “Autism Speaks. It’s time to listen.” We are not listening to the group who matters most in our mission. Our attempts to get autistic self advocates to the table to work with us, instead of vilifying us, will never work as long as we continue to overtly, persistently, and knowingly continue to be offensive.
Thanks to Michele for referencing this piece I wrote about why it bothers me that Autism Speaks-branded school supplies being sold at Walmart carry this message: "6% of the net proceeds will be donated to Autism Speaks, a non-profit organization dedicated to finding a cure for Autism."
Thanks to Amy Sequenzia for pointing out to me that she did.
So you may have been wondering if new Autism Speaks president Liz Feld would be moving away from any of the "autism is a horrible tragedy because of what it does to the neurotypical people in the family" rhetoric that has made autistic people hate the organization which claims to speak for us.
The answer is no:
Feld, a longtime resident of Larchmont and a graduate of Mamaroneck High School, said she had seen firsthand the toll the diagnosis can take on a family. She said she had watched a close friend’s family struggle with a child’s condition for 24 years.
“He’s on the severe end of the spectrum and is nonverbal,” Feld said. “The families have a crippling financial burden, the insurance doesn’t pay for many of the services needed, and it can be exhausting and emotionally draining. They go through a grieving period for all the hopes and dreams they had for their child.”
I've spent a lot of time learning about Liz Feld, the new president of Autism Speaks, since Bob and Suzanne Wright made the surprising announcement that she was replacing Mark Roithmayr, and I've made the following observations:
1) She is an extremely impressive person, as her biography from the announcement makes clear:
Feld has devoted much of her career to public policy and strategic communications. She served in the White House from 1984-1987, as public affairs specialist in the White House Office of Management and Budget and press officer for Vice President George H.W. Bush during the Reagan administration. She was director of news information at ABC News and senior vice president for communications for Nickelodeon. Prior to that, she worked at Robinson, Lake, Lerer & Montgomery, a strategic communications and public affairs firm.
In September 1999, Feld helped launch the Million Mom March, a national grass-roots organization established to promote sensible gun safety legislation. She is a member of Mayors Against Illegal Guns, co-founded by New York Mayor Michael Bloomberg and Boston Mayor Thomas Menino. Feld also serves as a board member of New Yorkers for Growth, a leading New York State fiscal reform group.
2) She does not appear to have any particular personal interest in autism.
3) She has worked mostly with people who have generally opposed government spending on things like health care and education. This concerns me greatly because I think cuts to those programs at the state and federal level pose the single greatest threat to autistic people and their families. I think it is vital that Autism Speaks start organizing members to fight cuts to the sorts of programs that Ms. Feld has not usually been in favor of funding. Her failed campaign for State Senate in 2008 was based around lowering taxes. She attacked Senator Kristen Gillibrand for supporting the Affordable Care Act.
4) She has a bad record when it comes to empathizing with people who are not rich and white. Feld was mayor of Larchmont, New York, when the county it is in was forced to settle a discrimination lawsuit because officials there "never tried to overcome barriers to fair housing that are based on race or based on municipal resistance to affordable housing." Her comments at the time indicated that she failed to take the issue seriously at all:
Larchmont, NY mayor Liz Feld says they're not small-minded, just a small town.
"We're a one-square-mile village, we're particularily small. Which makes it very challenging. We can't find housing for our own workforce."
And she continues to rail against the idea that communities like Larchmont should need to do anything to be more friendly to minorities.
I would argue that under-diagnosis of minority populations is a huge problem for autism in the United States. I wish the new president of our most influential advocacy group did not have a history of ridiculing similar issues in the past.
5) She's another TV person. Feld has worked at both ABC and Nickelodeon and her husband is still a television executive. As I wrote recently while explaining that, although Autism Speaks continues to improves, it is still a pretty negative force:
You always have to remember that Autism Speaks was started by TV people-- this is one of the reasons they have been so successful in dominating the media. But TV people have weird, and sometimes dangerous ideas about science. Before it became part of Autism Speaks, Peter Bell worked for Cure Autism Now, an organization originally funded by Hollywood producer Jon Shestack, who started it because he believed movie money could hurry science:
“I work in the movie business,” Shestack says. “I know you can hurry anything. You put more guys on the job, you spend more money. You just can’t do it for free.”
That attitude-- that you can get the result you want just by spending more-- is endemic in both television and the movies. And it has been part of the culture of Autism Speaks since founder and former NBC executive Bob Wright hired former NBC executive Alison Singer to be its first employee.
In television, you win by getting people's attention and getting them to agree with you. In science, you win by being right. When you start off with a wrong idea, like autism is a disease, it ultimately does not matter that much how much money you spend. The most expensive car will never get you to the right destination if you drive it down the wrong road.