Autism Speaks, founded in 2005 by Bob and Suzanne Wright, sometimes seems to have taken over the entire conversation about autism in this country, what with their blue puzzle pieces littered all over the landscape, coming to symbolize, wrongly, autism itself. Yet in spite of their ostensible role as a voice for autism, they’ve got a poor track record of showing respect for autistic people. One example is their intensely offensive “I am autism” video from 2009, promising a threatening, ominous autism that “ knows where you live” and “works faster than pediatric AIDS, cancer, and diabetes combined.” Oh, and guaranteeing also that autism will make your marriage fail. It doesn’t.
But that little fact and any number of others didn’t get in the way of Suzanne Wright when she settled in to pen her organization’s recent “call to action” on autism, this time switching pronouns to assert repeatedly in boldface, “ This is autism.” She claims that the country has failed autism families, “let them split up.” According to Ms. Wright, families who have autistic children are “not living.” Except that, almost in the same breath, evidently we are living
… moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.
She compares the “3 million children” in the United States with autism–of whom one is presumably my son–to a crisis on the level of 3 million children suddenly going missing or 3 million children waking up all on the same day, gravely ill. We would, she says, call out all of the military to resolve this problem, it is so dire, so why do we not do that for autism? It’s not the first time someone has compared autism to having a child stolen from them or to a dire disease. From what I hear from people who have, in fact, actually lost a child to a disease, there is no comparison.
Autism “moms” (no dads?), she avers, live like this:
On bad days, they are depleted. Mentally. Physically. And especially emotionally.
Maybe they have been up all night caring for their teenage child who’s having a seizure.
Maybe they are up yet again changing the sheets because there’s been another bed wetting accident.
Maybe their child has been trying to bite them or themselves.
Maybe they can’t afford the trip to a doctor specializing in autism.
Maybe there is a waiting-list for ABA, speech and OT.
Maybe their insurance won’t pay.
Maybe they don’t have the money to pay a special lawyer to fight for school services.
As a family, we have experienced almost everything on this list, some with our autistic son and some with other sons, and some with all three. Wright says, “This is autism,” but with our three children, it’s just been “parenting.”
Parenting can be tough and can leave you tired, mentally, physically, and emotionally. It’s true. But I can’t begin to say how offensive it is that someone would distort our lives with our wonderful children as not even living, as nothing but “despair” just to buy attention from people who don’t know any more about autism or autistic people beyond that blue puzzle piece. Or that this cherry-picked representation of parental hardship, with no mention of the needs of autistic children, is used to paint a sort of forthcoming reign of terror over our nation if we don’t do something about it. This kind of vilification of autism serves primarily to dehumanize autistic people and leave them as the frightening “other” of Autism Speaks’ infamous video.
Do families with autistic children need a smoother road to services and resources? Of course. Families with children with any complex condition need that, and so do autisticadults. Do we need better supports in school, better infrastructure for our children as they grow? Yes. Of course. Do we have to diminish and demean and dehumanize our children to get people to listen to us when we talk about these needs? I emphatically think not, and many autistic people and parents of autistic children agree, based on the reaction in the comments on Wright’s post [and elsewhere, including from longtime supporters].
It’s odd that Wright would argue so strongly for supports given that, according to the Autistic Self Advocacy Network [their statement on Autism Speaks is here], her own organization in 2010 devoted only 4% of its budget to “Family service” grants. And Autism Speaks’ track record on inclusion of the very people it claims to represent was limited, at best, and now has returned to nonexistent.
The organization at one point tried to make what was clearly a token effort to be inclusive of the autistic people Suzanne Wright offends in her latest disjointed salvo: They got autistic writer John Elder Robison (Look Me In The Eye) to join the organization as a member of its boards on science and treatment. He soldiered on through what he references as public relations gaffes, but even Robison–a gentle, funny, kind, and optimistic man–has had enough with this organization. He has resigned from his association with Autism Speaks because of Wright’s screed, writing in a letter to them that
Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.
Robison goes on to say
Autism Speaks still has a base of support among families of young children, but it has very little support from parents of older kids, or autistic adults. And the fact is, that is the majority of the autistic population. I’ve made that point in the past; apparently to no avail. I’ve suggested things the organization could do to garner support from those groups, but those suggestions have been ignored.
How will people with autism assume a leadership role in guiding the development of tools and therapies to help our community?
We have a number of good organizations fighting for rights, but none had anywhere close to the resources of Autism Speaks, especially in science.
One place that I find consistently good interpretation and synthesis of autism science isSFARI.org, website for the Simons Foundation Autism Research Initiative. It’s another autism organization begun by a well-heeled philanthropist with an autistic family member, but the focus of both the organization’s funding and the science communicators on the site is solidly scientific. What appears to be lacking is autistic representation and autistic voice, something Autism Speaks no longer has, either. But at least SFARI is getting it right on the science and doing it without roundly offending autistic people in the process.