On June 23, I attended the Nisonger Autism Institute, a day-long, invitation-only conference that focused on transition across the lifespan. I’ve been wanting to write on my experience there for some time now, but needed a month in order to cohere my thoughts (and to lower my, um, blood pressure).
I should start off by saying that I’m glad, very glad, that they invited me to attend. Moreover, if they host another institute next year, I hope I’m re-invited. In fact, I hope they they invite a heck of a lot more self-advocates. While there, I was told that the attendance tally was somewhere around 110 people and that only three attendees were autistic. This seems to be par for the course with the autism-centric conferences I’ve attended, unfortunately. It’s not a happy sort of feeling.
Not only were the autistic people missing — so too were the parents. The only parents there, generally speaking, doubled as service providers or professional advocates (e.g., teacher’s aides, psychologists, ASA officers). The sad irony? All of the presenters, to the point of redundancy, stressed how important it is to include family members and self-advocates in “the conversation” — yet there were hardly any family members or self-advocates in this particular conversation.
The highlights of the conference, for me, were Pat Cloppert’s presentation on middle school, as well as the presentation on adulthood by Tom Fish, Benzion Chinn, and Patrick Meehan (the latter two being autistic self-advocates).
What I really, really have been itching to write about, though, was the keynote speaker — Sally Rogers of UC Davis. I knew things would be rocky when, at the start of her talk, she made a shout out to Geri Dawson, Autism Speaks’ Chief Science Officer. (One of our protest signs during last year’s AutSpks walk was: Congratulations, Columbus! You’ve just paid Geri Dawson’s salary. Heh.)
In essence, Rogers stressed the now common refrain about the importance of early intervention. And the neuro-normative biases of this presentation smacked me in the face, minute after minute. Rogers described “deviant” behaviors and “language delays deviance,” and then talked about eliminating “atypicalities” through therapy. More than once, she described autism as having “isolating effects” (you know, rather than mention anything about how a neuro-normative society isolates autistic people because they’re “deviant”), and she also posited that she wants to see “less disability and more function.”
Some of the assumptions undergirding her talk, assumptions that make my skin crawl:
- It is better to be non-autistic than autistic.
- All autistic behaviors (including, but not limited to, stimming, repetition, prosody, ways of communicating or expressing) need to be eliminated.
- Autistic people’s challenges primarily arise from being autistic — this, as opposed to autists dwelling within a one-size-fits-all world. (I’m not saying that autism doesn’t cause challenges. I am saying, however, that representing autism/autistic people as a big bad problem to be eradicated is 1) flagrantly ableist and entrenched in a medical model of disability, and 2) deflects attention away from that ableism. I’m sure I’m saying other things, too. I just haven’t decided what else yet.)
- One can train away autism.
- We need to take as gospel all of the common, dehumanizing ideologies associated with functioning labels, or what it means to be a “functioning” (and thereby more human and desirable) person.
Toward the end of her talk, Rogers showcased several video clips: autistic babies vs. NT babies. And something really disturbing (I think) happened: when she prefaced a video with here’s a typically developing baby, the audience cooed, laughed, reacted happily. When she prefaced a video with here’s an autistic baby, the room grew silent, solemn, non-responsive.
I don’t laugh at babies. Unlike the pope, I don’t kiss babies that are thrown my way. I admit it — babies and I don’t jibe. In that moment, though, I wished I were a baby-liking sort of person — that at least I would have been reacting, laughing, or goo-gooing over the many cute autistic babies.
I don’t think that cute and autistic are mutually exclusive entities. And it’s disturbing to me that service professionals do not find (or behave as though they do not find) those whom they serve to be adorable, cute, beautiful, intelligent, or funny. Unless those whom they serve were to become “more typical,” that is.
At only one point did the audience react positively toward an autistic baby: when Rogers claimed that this baby, because of intensive therapy, was “virtually asymptomatic” and “as cute as can be.” Then the audience laughed.
*headdesk*
It sounds like Ms Rogers is very effective at leading an audience around by their noses.
Clay: Yep. I think it has lots to do with the “autism expert” ethos (mythos?) thing. The trend seems to be problem/fix, problem/fix.
Her keynote was also about two hours long — which, in my mind, is one hella long keynote. But that might be the norm for professional/social science-y types? (I’m not sure. My scholarly home is the humanities.)
Contemporaneous to your post (indeed a few hours ago) came these words from a doctor.
http://distractible.org/2010/07/28/arbitrary-normality/
He came to quite a different conclusion than Rogers and Davis.
Though some things were not quite so different: for example, he mentioned “as their function increases, they reveal a sense of humour”.
(Like cheese, crackers and wine; we mature with age!)
Have been most interested in the conference since you and Benzion tweeted about it last month.
The title reminded me very much of a Glenn Doman book. (of the How to increase your baby’s intelligence type).
As for the picture, I think both children are cute.
I also think the boy holding the girl’s chin is … violating. I do not know if he means harm. The boy’s smile is direct, and the girl’s eyes are lovely.
In the interim, I “went to” Wikimania in Poland. Some of the keynotes were 45-60 minutes: I mostly listened to the ordinary speeches. Those three days were great.
Adelaide: Thanks for your comment — and for the link!
This comment also allows me to clarify a couple things (which inevitably happens once I write a long, rambling post — I keep thinking of things I should have mentioned). I like the way you put it about maturing with age! Autistic kids become autistic adults; inevitably we mature, we compensate.
Additionally, I do think there’s a big difference between helping autistic kids to lead happy, fulfilling lives vs. trying to make autistic kids into non-autistic kids.
The thing that bothers me about Rogers’ statement on functioning, or just on the whole ideological conception of functioning — she verbatim said that she wanted “less disability and more functioning.” This plays into the notion that disabled people cannot function, as if there’s some sort of existing bar graph that displays functioning going up as disability goes down. (It assumes that disability is some static, linear phenomenon, and it likewise very problematically assumes that functioning is empirical, concrete, and antithetical to disability, as opposed to functioning being normative and socially constructed. Functioning centers nondisabled people as ideal and reduces disabled people to, well, nothing positive — and certainly not valued members of a community or society.)
I’m rambling again. 🙂
Thanks for your note about the photo — it’s actually a photo of me and my cousin. I’m guessing that one of our parents told him to try and get me to face the camera. (Though I might be wrong.)
What is wikimania? Sounds interesting!
I am willing to use functionality labels solely for political franchise since it is the only situation in which the categories are relevant. It matters to me whether someone living in this country has the physical capability to serve in the draft and the mental and communicative capacity to vote and serve on a jury. Other than that it is none of my business as to what you can or cannot do.
When can we start suing neurotypicals for prejudice and discrimination every time they talk about the value of friendship and that it is a bad thing to spend most of your life by yourself? :p
Melanie:
Maturing and compensation. Uta Frith said something about that back in 1991 in her second book. And Oliver Sacks referred to it in his Anthropologist on Mars.
I was looking in “Images” (great blog tag category by the way) and when I put two and two together! Thank you for the clarification. I didn’t exactly want to say it was you because I wanted to look at the 2 people in the photograph without bias.
Wikimania is the yearly conference of the Wikimedia Foundation, the people who administrate Wikipedia and all the other Wiki projects created and evolved under their aegis. Next year the conference will be in Haifa, Israel. This year’s conference was on the 9th – 11th July in Gdansk.
Here is its link:
http://toolserver.org/~emijrp/wikimania/
(the IRC-streaming-twittering mashup!)
http://wikimania2011.wikimedia.org/wiki/Main_Page
(The Haifa Wikimania link).
The only thing which was a bit of a fizzle was the Accessibility Workshop, which was run by Rodan from the French Wikipedia. My favourite was probably about civic virtue by Joanna Kulesza from the Polish Wikipedia. And I liked “From Russia with Love” and “We were promised Xanadu”.
Benzion:
“It matters to me whether someone living in this country has the physical capability to serve in the draft and the mental and communicative capacity to vote and serve on a jury. Other than that it is none of my business as to what you can or cannot do.”
Just a quick point about the judges.
This morning there appeared an article about jurors and judges being excluded on the basis of physical or mental illness. For instance, there was a judge who was asked to leave their post because of sleep aponea.
As long as you don’t try to tell other countries what to do, then I accept that.
And it’s not an either-or thing, where you lower the standards so everyone can do it or make them high so that nobody can.
(I would like to have the “standards” made the “fall guy”).
If it’s any consolation, a lot of people (including almost all the professionals who have worked with my children) consider by autistic children to be cute/adorable/lovable/precious (and the list of positive labels goes on). I’ve met very few actual practitioners who haven’t seen my children in that way. In fact, many therapists have gone out of their way to ensure they still have a place in the boys’ life after the “intensive” program ends. Of course, they’re not babies any more, but they still get cooed and ahed over when people look at their baby pictures, too.
That–as it seems to me–the training is in the reverse, that practitioners are being trained to see autistic children as uncute, unadorable, unlovable, and unprecious is a very sad and dangerous thing.
You should either read books or start watching movies on dog training. Or if you wanted to ask to sit in during a dog training class, say you want to be a dog trainer when you get older
Sure, a dog’s temperament determines how quickly they can bounce back from a traumatic experience, if ever. For instance, a friend’s dad has a excitable JRT who got so excited when company came in the door he jumped on a hot wood stove. He never did that again. And when you open the door on it, he bolts. Then again, you know the saying some fools never learn. There are countless dogs who get bitten by snakes, attacked by cats, hit by cars more than once because they shake off the experience a little too quickly.
That is par for the course of people who run the MIND institute. It is a reactionary research center who does not give a hoot about the opinions of their own “subjects.” They have come up with absurd excuses not to have autistic representatives, such as claiming that the autistic children do not understand enough about their social environments to be able to form a good insight on how to deal with them. Hello, these are children! Not many NT children have a good insight either, it takes time to build that skill. Autistics can have that too, but the MIND institute does not want to admit that. They are worse than Autism Speaks.
Here is a video about that one excuse involving autistic children who get bullied. It makes my blood boil when professionals act so omniscient about what is best for children on the spectrum. I let them have it under the name AnElephantThatPaints.
As a professional, I weep for individuals with autism who are considered less than, in need of cures, ignored, pitied, controlled by others, etc. However, as a professional, I find it difficult to walk the path of teaching, caring, including, and relating. I am responsible, as a teacher, for what happens in my classroom. I do seek information from and about my students. I do listen to and include parents. I am knowledgeable about research. I do include best practice. I do make mistakes that I regret. The only path is open communication that includes all parties, including the person with autism, family, community, school, service providers, researchers, etc. TIME Time is the problem. Until we are all committed to the time it takes to collaborate, we will all make too many mistakes.