John Elder Robison, an autism advocate, publicly resigned yesterday from the research advocacy group, Autism Speaks. You can read his open letter here, and I want to use it as an opportunity to draw attention to an important distinction not many necessarily know of. Many people look at autism as a “disease” to be “cured.” They tend to be the parents, extended family members and caregivers of children who have an autism diagnosis. I get that. Why?
In early 1989 I became just such a parent when my son, Kris, was diagnosed as “severely and profoundly developmentally delayed,” with “autistic like tendencies” (he also had an infantile spasms diagnosis, which is a relatively rare form of epilepsy). My (now) ex and I were advised by a pediatric neurologist at Denver Children’s Hospital to “have more children.” I am not making that up. He went on to explain that Kris would likely live to be an adult, but that trying to care for him ourselves would eventually bankrupt the family and it was really just a question of time before we made him a ward of the state and he was placed in a group home. Yeah, that is a “conversation” you do not expect to have (rather gob-smacked, I don’t believe either of us had much of a response). As it turns out, Kris died from a head injury he sustained in the kitchen of our home on 7 November 1993. And while we had a taste of the challenges the good doctor had forecast, we also had experiences that gave us cause for hope that Kris could live a semi-independent life as an adult, perhaps such as those presently lived by Larry Bissonette or Tracy Thresher, whose lives are depicted in the documentary Wretches and Jabberers (US$ 3.99 on amazon.com).
Autism Speaks has issued a national call to action, in which it describes children with an autism diagnosis as, literally, missing: as if they had been taken and are no longer present. My son, Kris, is missing. Death took him. Autism did not. For me to accept that analogy is tantamount to denying the value of his life, the joy and love (and, yes, frustration and pain) I experienced sharing my life with my son. It is tantamount to denying him his humanity. The point of view expressed in the call to action, then, is not terribly different from the one that informed our pediatric neurologist in 1989. To understate it, that shite ain’t cool.
While many have an “autism is a disease we must defeat” approach, there are lots of adults, like Larry and Tracy, and lots more like myself, who are living and functioning outside of group homes as autistics. John Robison is one such person, and as he explains:
I celebrate the gifts autism brings us, and I have discussed at length the emerging realization that autism – as a neurological difference – confers both gift and disability on everyone it touches. It’s the fire the moves humanity forward, while simultaneously being a fire that can burn us individuals as we try to make our way.
This is how the folks behind International Autism Acceptance Decade put it:
International Autism Acceptance Decade, 2010-2020, is an effort by autistic people to move the conversation about autism from awareness to acceptance.
In other words, autism is not like cancer, multiple sclerosis, typhoid or any other myriad of diseases for which words like “epidemic” and “eradication” are appropriate. This is from John Robison‘s resignation letter:
I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.
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.
In closing, let me note that I do not write this post lightly. Portia Iversen, who co-founded Cure Autism Now (which has merged with Autism Speaks) brought her son, Dov, to Kris’ Camp not long ago, and has been a wonderful source of counsel and support to me ex and the others with whom she works at Kris’ Camp. I have never met, or had conversation with, Portia, and thus have no clue what is her view on this issue. But I am saddened to see the language in the national call and understand why Robison, whose views match my own, has concluded that he advocacy for the acceptance position working within Autism Speaks has failed. It is a shame.