CBC News has just run a special, Postively Autistic, that many will find of interest–the link to the site is beneath the fold below as well as a transcript. The video runs 19 minutes, and features Amanda Baggs, Ari Ne’eman, and Michelle Dawson, amongst others. The site for the special also contains a lot of other information. General drift: representation of autism as a positive human variation that stands in need of social acceptance, and links this view to the disability rights movement and the idea of neurodiversity. It’s a bit more choppy than I would have liked, and has very articulate autistics (like Baggs and Ne’eman) speaking for auties as a whole. Maybe this is a good way to start with introducing the idea of autism as a form of natural human variation, but we might push further and represent more of this variation, some of which folks will find more disturbing. (Here having Dawson in here is a bonus, since while she’s incredibly articulate, she also conveys a few more clues about the kind of variation one might find on the spectrum. Sadly, there’s not an extra piece on her, only on Laurent Mottron, whom she works with in Montreal, on the CBC website. I suspect that was a personal choice of Dawson’s.)
To be sure, this is not a way of saying “Whoah, before we go the whole neurodiversity hog, let’s look at this REALLY whacko stuff”, but to say that we might want to consider a more radical extension of what counts as natural human variation: the good, the bad, and the ugly. Stuff that doesn’t make us feel quite so comfortable. Let’s shift our comfort zone more than just to the next room. How so? Well, you could start by representing “high” and “low” functioning auties, and give a better idea of the mixture that there is. And then let’s embrace ALL that. Now that would be “postively autistic”.
As it stands, the special basically says that while there’s all this bodily, cognitive, and behavioural variation out there on the autism spectrum, all of which can deviate from the norms of polite society, we can rest assured that, deep down, they’re just as articulate and smart as normals are (whew!), and simply express themselves in different ways. A good start on opening up some minds, but also a way to privilege intelligible communication as a criterion for acceptable neurodiversity and to promote cognitive powers–suitably varied and accepted–as what really matters for being, and being treated as, a full member of our communities. For many auties who can’t (literally) speak for themselves, is this what they want?
Maybe this can’t all be done (and in 19 minutes) on national tv in an effective way. And keep in mind that however crabby this sounds, I am, after all, blogging about this in an encouraging way. (At least for me.) Anyway, check it out at the CBC site right here, and feel free to post back here on your views.
Narrator: In 1943, psychologist Leo Cannor used the word autism to describe a group of children unable to “relate themselves in the ordinary way to people and situations from the beginning of life.” He cited their “profound aloneness”, “difficulty using speech to convey meaning to others”, “obsessive preoccupations”, “horror reactions to loud noises or moving objects”. Since then, scientists have come to regard autism as a spectrum of mental disorders ranging from very mild to very sever in effects.
Most therapies focus on modifying behavior. There is no cure.
Amanda Baggs: My name is Amanda Baggs. I’m 27 years old. I am not locked in my own world and I prefer to be autistic. I have the motor capability of speech, but not the ability to consistently give speech any meaning. It’s easier to type what I’m thinking than to say it with my mouth. This is a machine that has a speech synthesizer built into it, and I type something here. Then I hit a button and it speaks the words out loud.
I made a video and put it on YouTube. It’s called ‘In My Language’. It’s what I consider my native language to be which is quite outside of the English I was taught growing up. And try to point out how people who have our own language and our own way of communicating are treated and dismissed as non-persons, and lessened until we learn more standard ways of communicating.
In this video I showed a lot of different ways that I interact with my environment. They come a lot more natural to me than the ways I’ve been taught to interact with people. I really consider them a form of communication between me and things around me.
Michelle Dawson: Differences can be profound, without actually being disorders. You know, it’s only in autism where we assume that if people are very different then they must be sick.
My name is Michelle Dawson, I’m an autistic researcher affiliated with Laurent Meton’s research group at the University of Montreal. One way to look at autism, and it’s a very common way, is to, you start with a typical baseline and you say, ‘this is how people should be,’ and then you say ‘well, look, we have this group of autistic people and they’re above the baseline here, they’re below the baseline here, above here, below there, and then you call these behavioral excesses and deficits, in effect saying that any deviation from the baseline is problematic. There are problems with this at an ethical level, we should probably know better now than to assume that there is an optimal way to be human.
Ari Ne’eman: My name is Ari Ne’eman, I’m the founding president of the autistic self-advocacy network. I saw that the autism spectrum was being primarily defined and talked about by non-autistic people: parents, professionals, and others who didn’t always represent our interests and how we view ourselves as we would.
It’s essential that when you talk about autism, when you research autism, when you set policy about autism, you involve autistic people in those discussions and in those deliberations. Autism is currently viewed as a disease, through the medical model, something to be cured or eliminated, and that doesn’t reflect how we view ourselves, that doesn’t reflect our reality. What we want to see is recognition that autism is not some appendage that attaches itself to people. It is a part of who we are, it is a part of our existences, and it is not necessarily something that precludes a high quality of life.
Estee Clar-Wolfein: My name is Estee Clar-Wolfein. I am the mother of a wonderful 6 year old autistic child named Adam. I am a blogger of the Joy of Autism blog, and I am the founder and executive director of the Autism Acceptance Project. And my child could be considered moderately or severely affected. I’ve chosen not to look at it that way.
Most of all it was Adam that always changed my view, because he never fit the images of what people said he had to be like as an autistic person. He’s very affectionate, he’s very outgoing, he is intelligent, he’s curious, he’s able to learn with out a particular methodology. I had to find out and to really seek out other autistic people to begin to understand autism, because there was something in my gut that told me that this wasn’t going to be a tragedy.
Amanda: I make my videos on my own. I learned to do it just by doing it. Nobody taught me anything except someone showed me how to caption it, but that’s all. And I take all the video, get it on to the computer, and then I use a variety of programs to convert the files, edit them into a movie, caption them, and then convert them back to something that can be used on the internet.
Estee: Adam was, always gravitated toward the computer, and I noticed that responding on a computer to questions was a lot easier for him than looking at my face or looking at anybody else’s face and responding.
(Adam types O G E R on his computer. Estee says: “He ogre? You’re not an ogre!” and tickles Adam.)
Michelle: What is very overtly misunderstood is that, if an autistic child does not turn their head to orient towards a sound, it’s assumed that that child is unaware. It’s assumed that if a child does not, often if a child does not speak, that they have no understanding of language, that they can’t possibly be intelligent and so on.
Estee: Motor planning issues are an example of why it’s difficult to talk. Even though you can read, you may not be able to read aloud. Adam reads books and he jumps up and down and he used to run around and jump up and put it on the edge of his bed, and jump up and down, and you think well WHAT can he be reading from that. You know, a book worm has to be sitting in place and sitting still and looking at this. But he was! He was reading dictionaries, he was reading encyclopedias, he’s been reading all of his life.
Michelle: As somebody that has trouble taking care of herself day to day, my day to day situation is enormously precarious. I know enough about how autistic people are judged to know that I have a high level of what are called maladaptive behaviors. I have severe self-injury as a behavior that is often used to scare the public about people like me.
Amanda: I have staff that come and help me with assorted daily living stuff. Anyone who thinks they are independent themselves is fooling themselves. Nobody is truly independent. Why is it that some kinds of dependence are so invisible to people that they are called independence, while other kinds are considered dependence and considered something awful for it? Why is it that I am not considered to live independently because I can’t cook for myself, but other people are considered to live independently if they can’t fix their computers?
Michelle: I process and analyze information in a different way from the other researchers I work with. I suppose my main role is reading and writing papers and looking at a lot of data. I mostly work alone, standing up in my kitchen at a computer and sometimes go to the hospital or whatever is asked of me. So it isn’t that I’m more intelligent than them or… I’m certainly not better educated. I haven’t been to university as a student. I just look at things different and it’s sort of complementary. That is, I can’t do things that they do quite easily. On the other hand, they can’t do things that I do quite easily. And it seems to be productive to have these two different kinds of minds working together.
Ari: We should view neurology through the same civil rights lens that we currently view race, religion, sexual orientation, and other forms of what’s termed legitimate human difference. And basically from that perspective, instead of trying to find a way of making autistic people normal, or making people with other forms of neurological difference normal, what we should be doing is addressing the true problems and barriers that exist in our lives.
Estee: The normalization to me is a negative. If I were to extinguish Adam’s hand slapping or jumping up and down to make that behavior more appropriate, that’s taking away a movement that he needs to feel his body and space and the way he learns and perceives his world. So if I take that away, I’m almost impairing him more.
Ari: Autism is a natural and legitimate and hopefully permanent part of human genetic diversity. The problem to us is not being autistic. The problem to us is being in a society that does not provide for the right education, supports, and services to allow us to live a high quality of life.
Amanda: A person’s neurology can vary a good deal. There are so many different kinds of it, and one isn’t necessarily better or worse than another kind. In another video, I show how most people can name colors but they can’t name a musical note just from hearing it. But I can do both. So to me, they seem logical to both be part of the same skill, which is identifying the frequency range of light or sound. It’s the same thing to me, and yet for other people it’s really not the same and a lot of things about neurology are like that.
Ari: This past December, New York University’s Child Study Center put forward an advertising campaign that offended countless people throughout the disability community. It consisted of a series of phony ransom notes, each claiming to be from a particular disability that had supposedly “kidnapped” a child. It’s the idea that children with disabilities are somehow not fully present within their own bodies, that they live half-lives or life unworthy of life, has been an extraordinarily damaging concept throughout history and we felt it was necessary to unite to speak out against it. Thanks to our efforts, these ads were removed.
Michelle: The presentation of autism as sort of a tragedy, like losing a child, like a death in the family, all these things have been said and you know all these other things describing autistic children as rotting on the vine, autistic people as a blight on society, as not human unless we’ve had one particular intervention starting early in life and so on, these aren’t things only that I’ve seen happen to other people. That has happened to me. I’ve been called an animal to my face loudly by people who assumed that I was not sentient because my behavior was atypical and because they knew that I was an autistic. Not even an autistic person, I don’t think they saw me as a person. They did call me an animal and said that I should be treated as such. That was recent enough that it’s hard to talk about.
Estee: I started the Autism Acceptance Project following an exhibition I did of Jonathan Lerman’s work in 2005 here in Toronto. And then looking at autistic people and what they were producing with and without speech, what they were doing with their handicap. And I thought, well this is a side that we need to see, and we have Nobel Peace Prize winners that are autistic, autistic writers exist, autistic artists, autistic people exist and are talking for themselves and they are part of a greater disability rights movement just trying to be a part of the world and to contribute to it. And to be regarded as anybody else would want to be regarded.
Amanda: We don’t want to be seen as less than other people. We don’t want people to fix us. I have to say tat the main times I want to be non-autistic, what I really want is more like for people to not treat me badly for it, to not have been raised with ridiculous sorts of expectations that don’t match reality at all, to not be in a situation that’s structured so that I would look at myself as a broken model of someone else’s perfection or something.
Michelle: You know, autism isn’t a disaster. You know, autism isn’t the worst possible nightmare. Autism is not something that I think is what’s causing me problems any more than any other human being suffers or has problems or whatever.
Ari: Typically, when families talk about researching for a cure, what they really want to see is what will enable their children to communicate, to hold a job, to live in the community, to potentially marry and have kids. And you know, these are things that people with disabilities of all kinds can in fact do if we create a society that is open and inclusive to all. The problem is is right now the research and policy agenda around autism is not geared towards those things. It is geared towards trying to make us indistinguishable from our peers, to try and force us to be normal for normal’s sake. And the research money and the general legislative agenda has not been aimed at supporting us, it’s been aimed at eliminating us.
Estee: I was ambushed on radio once with that constant question, “how could you not want to cure your autistic child, what kind of a parent are you?” You know, I think I have a really healthy relationship with my child. I think to appreciate your child for what they are, in my view, is the best parenting. You know, you can’t always force your child to be something that they’re not.
Michelle: In my case, if there is something that makes me unique, it’s that, when I was in just a huge amount of difficulty, I was given this opportunity to use my abilities in a way to contribute to society, to be useful at a time when I thought I was useless. We’re 30 years behind in autism compared to other areas of disability. You know, we accept that disabled people have achievements, we accept that disabled lives are worth living, but in autism we’re not nearly there. We insist that the only way for autistic people to have a good life is to be as similar as possible to someone who’s considered to be typical.
Amanda: I think that the world is pretty much infinitely rich, and that different people can interact with different parts of it. And not a single one of us can possibly ever even approach how much there is to it overall. So to say that one person’s experiences of life are automatically richer than another’s isn’t something I’d consider accurate. Our experiences may differ a lot in some ways, but we’re part of the human condition, and we’re not a lesser part of a tragic part or sad or pitiful or pathetic.