Aut and Proud
Basketball sensation Jason McElwain finished a marathon in Rochester, New York, and has qualified for the Boston Marathon.
Miss Montana, Alexis Wineman, talked about her autism at the Childwise Institute's conference:
“By the time graduation rolled around, I was proud of who I was, and I was confident that I had overcome this vicious circle in which I had been sinking,” she said. “I graduated high school, which was something I previously felt was impossible.”
She said she surprised everybody when the decided to enter the Miss Montana program. She told people she wanted to prove to others what she could do; but really, she said, she wanted to prove it to herself.
Now, she has been accepted to the University of Montana, and is deferring enrollment for a year and still looking at her options. She’s slated to be on a national stage — the Miss America pageant — in Las Vegas in January.
“Being on the (autism) spectrum is not a death sentence, but a life adventure, and one that I realize has been given to me for a reason,” she said.
Renzo Burga has a 4.0 GPA at Broward college.
Mary and Jack Robison are running their own business making parts and add-ons for 3D printers. Jack says:
3D printing is in the process of revolutionizing traditional methods of making things. I think small printers like the RepRap will ultimately leave the world of hackers and become consumer electronics, much like computers did 30 years ago. Individuals and companies will be able to directly manufacture the things they need, for significantly less cost than the things are currently available for. My original plan to use the printer to make parts for my quadrocopter is a small-scale example of this, but the potential is limitless.
It'll have significant effects on education too. Students will be able to make whatever they can draw, perhaps giving a new generation of engineers much more hands-on experience at a very young age.
Jack's father John Elder is working with them and continues to speak about autism, telling his audience that the world needs us.
The time has come to talk about "aspie supremacy." And about language police, but that will come later. First of all, I think it's important to distinguish, as Amanda Baggs did two years ago, between "autistic supremacy" and "aspie supremacy", because they are really different things, and we need to be concerned about them to different levels.
"Autistic supremacy" is the belief that autistic people are superior to neurotypical people, and Amanda coined the term in 1999:
Back then it was just a tiny number of people who thought this way. When I used the word, I meant people who went beyond just wanting equality. They thought they were better than nonautistic people. Not just in satire or jokes but for real. Some of them went even further and considered nonautistic people worthless or even worthy of death or being rendered nonexistent by (a distorted idea of) evolution.
A friend tells me this sort of thing is a normal, perhaps even necessary, part of a minority group’s journey to self-acceptance. Maybe, but it still leaves a bad taste in my mouth.
I am pretty much in agreement with her take on this trend: it's gross but irrelevant:
Autistic supremacy can do damage but it’s limited damage. They have neither power nor numbers on their side. They can rage on the Internet. They can cause damage to the few people around them offline. Even if one decided to cause as much harm to everyone around them as possible it would be tragic but in no way equal to the harm done autistic people all the time. Usually the most harm they do is getting people to believe that most autistic activists are like them. They just don’t have the power to do wide-scale harm.
Most of the time, autistic supremacy is limited to Wrong Planet, Facebook, and tumblr. I sometimes find prominent self-advocates coming too close to it for my taste, but not often.
The first thing I've seen on the Autistic Self Advocacy Network's fantastic new website that has made me uncomfortable was Dylan Matthew's piece yesterday about the advantages that Aspergers gives him. Even though he is careful to say that he does not want to minimize the challenges that Aspergers causes, I feel like his essay does in fact do that:
I write about politics and public policy for a living. To do that well, you have to have a fair amount of background knowledge, of everything from how Congressional committees work, to various court precedents, to what it means when a rating agency downgrades Greek debt. And if you don’t know something, you have to be able to dig in and learn it quick if you’re going to write intelligently about it. What you really need is some kind of superpower that lets you dive into a subject and learn everything there is to know about it, and then not forget it.
I got lucky in that I have that, in that I have Asperger’s Syndrome. When parents hear that their kids have Asperger’s, or are otherwise on the autism spectrum, this aspect often gets spun as a negative, that it means your child will be this weird obsessive who memorizes facts about trains. But it turns out that being able to absorb and process information quickly and diligently is a highly marketable skill. Transit companies need people who know a ton about trains. Museums need people who know a ton about art. And some places, like academic department or, in my case, newspapers and magazines need people who know a ton, full stop.
This is too close to suggesting that autistic people are better than NT people for my comfort. It doesn't cross the border into autistic supremacy, but it isn't really aspie supremacy-- that's something different and more dangerous.
"Aspie supremacy" is the belief that people with Asperger's syndrome are just a different type of people and equal to NTs -- but that "lower functioning" autistic people are somehow less than fully human. Again, from Amanda:
When I use the term aspie supremacist I mean something more specific. I am referring to “aspies” who think they are superior to other autistics, or to “AS/HFA” who think they are superior to “LFA”. In practice this means, “We aspies are just different but autistics are defective”. “AS/HFA is part of human diversity but LFA has no value”. It’s the Carleys of the world cringing at the very idea of sharing a label with people who wear diapers (the joke’s on them as many “aspies” wear diapers too). It’s any and every way that the value and contributions of “AS” and/or “HFA” people a put above the value and contributions of “autistic” and/or “LFA” people.
Aspie supremacy is disgusting and despicable. I understand that all of us absorb certain cultural values but that is what makes aspie supremacy more dangerous than general autistic supremacy.
This is very similar to the hierarchy of disability we saw on Glee when Becky wanted to date Artie-- some kinds of disabled people are "people" and others are not. The comments that made me most uncomfortable when I did my "I embrace being retarded" experiment were the ones that suggested that autistic people are the equals of NTs but that people with intellectual challenges are not. Lots of autistic people have intellectual disabilities. And that is nothing for us (or them) to be ashamed of or afraid to talk about.
I don't think it crosses into aspie supremacy, but I don't like to hear people like Kirsten Lindsmith and Jack Robison talk like this:
DONVAN: Hi. Jack, you just heard my description of Asperger's. Take a moment and add to it or correct me, or just if I got it right, let me know that, too.
ROBISON: I think that you got many aspects of it. I think the biggest thing is that Asperger's is sort of a way of being rather than, like, a condition that you have.
DONVAN: Mm-hmm. Do you feel the same, Kirsten?
LINDSMITH: Oh, yeah. I agree. I'm - it's been pathologized as of late, but I would consider it more of a type of person rather than a disease. Also just a minor correction, the beginning of the article introduced our ages when we got together. Now I'm 20, and Jack is 21.
I don't think of myself as an "aspie" because I don't have an Aspergers diagnosis. Matt who does "Dude I'm an Aspie" also does not have a diagnosis, but he embraces the term for himself, and defines it as well as anyone has. I don't think I'm "right" in my terminology and that Matt is "wrong"-- I know there are people who would say we are both wrong to claim membership in either fraternity without going through the ritual of diagnosis, and I don't think they are wrong, either.<
I really don't think it's fair or accurate to suggest that all use of the terms "aspie" or "Aspergers" tend toward "aspie supremacy" or that people who prefer to use those terms to refer to themselves should be made to feel guilty for that.
So I was disappointed in Lydia Brown's essay yesterday. Like Dylan, Lydia is careful to say she thinks people should be able to use whatever terminology they want. But that doesn't stop her from implying that people who prefer "Aspergers" are selfish and wrong:
Asperger's is a term that carries far more baggage than it should, and until we can academically and objectively dissect its use and history, continued emphasis on this label and its associated labels will only harm the community. This is why I cringe when I hear people use the terms "Aspie" and "Asperger's," because every time someone insists on these types of terminology, that person emphasizes and reinforces some very dangerous ideas.We are at a point where our community needs to foster as much unity and solidarity as possible, and one of the ways in which we can do this is through the language we use to refer to ourselves both within and outside the community. I do now and always have supported the right of individuals to determine what they wish to be called and how they wish to refer to themselves when using identifiers, but I urge those members of the community who are reluctant or less frequent to identify themselves as Autistic to consider the ramifications of this single, unifying identity label.Using Autistic is a symbol of solidarity with all other Autistic people, because it emphasizes our similarities down to our very neurological wiring rather than calling attention to superficial or socially constructed differences in our apparent abilities. It makes it harder for those opposed to neurodiversity to draw on the high-low functioning dichotomy or the differences in criteria for diagnostic labels, because the word "Autistic" is all-encompassing. Autistic refers to any individual whose neurology is divergent from the typical range of variability enough to cause core characteristics of autism in information processing differences. It pays no attention to specific abilities and challenges, as these vary in every group of people. It pays no attention to specific diagnostic labels, because labels themselves are a social construction as essentially invalid as monetary value.
It's Jack Robison's birthday, so his father John Elder remembers buying him at the kid store:
I picked him up, hefted him and tossed him in the air. “Careful, Sir!” The salesman was indignant. “These babies are expensive! If you drop him you’ll have to buy him, even if he’s damaged.” Money was tight in those days, and I set him down gingerly. We took a few other babies out and compared them. He was the obvious winner, but I could not let on that I was smitten. I had to seem dispassionate and logical.
“What about kiddie mills? Is that where he came from?” I challenged the salesman. “Sir!” The fellow seemed indignant though I was sure he’d heard that question a hundred times before. “The other store at the far end of the mall sells kiddie mill children. We sell good country raised kids here. Go down there and look. I’m sure you’ll see the difference. Even now, all their kiddie mill babies are howling and biting in their cages. Look how sweet and placid this one is, in comparison.”
Love between fathers and sons who both have Aspergers is a beautiful (and funny) thing.
Jack Robison and Kirsten Lindsmith, the subjects of Amy Harmon's well-received New York Times story about love and Asperger's syndrome, appeared yesterday on National Public Radio's Talk of the Nation. It was really great to hear host Jack Donvan talking to autistic people about autism.
Lindsmith was especially interesting when Donvan asked her if she had worked to understand nonverbal cues:
LINDSMITH: Oh, I definitely do. I don't know about Jack, but I - the Internet is a wonderful tool. I've found myself Googling things like body-language dictionary. And I found a website that has a very comprehensive body-language dictionary, and I learned things like, for example, if someone is talking to you and squinting one eye, that means that they are talking down to you from a superior position, often giving orders.
And I realized that my old boss used to talk to me this way, and I had always assumed he had some sort of facial tic because he would squint one eye when talking. And now that I'm aware of it, I see it everywhere. Even on TV, actors will unintentionally do - will do it, or maybe intentionally, but that I - things like that I pick up on now that I've learned it.
DONVAN: But you needed to be - you didn't just absorb it, you needed to essentially read about it or be told about it, and then you can notice it?
LINDSMITH: Yeah, like I have a slightly easier job reading signals and facial expressions than maybe the more average autistic, but I know that, like, say different types of smiles, I can recognize a genuine smile from a non-genuine smile, or at least I think I can. But more subtle things like the direction that a palm is facing when someone is gesticulating apparently has a lot of meaning that that doesn't come naturally to me.
I wish all three of these people had been clearer about the fact that Asperger's syndrome IS a type of autism (Donvan said "it's sometimes described" as one, which is nonsense). And I hate it when high-functioning and lucky people with Aspergers want to deny, as Jack's father John Elder Robison sometimes does and both kids do here, that Aspergers is a real disability. No. Asperger's is mild but disabling autism, not "a type of person" or "a way of being."
Peter Gerhardt of the Scientific Council at the Organization for Autism Research joined the discussion to offer the perspective of an enlightened neurotypical expert and take calls:
When I talk to professionals about the issue of sexuality and relationships on the autism spectrum, they often say, well, parents don't want to deal with this, parents are afraid to deal with this. And then when I talk to parents about the issue, they say, well, professionals don't want to deal with it. So what ends up is nobody deals with it, and it becomes, sort of this, you know, elephant in the living room that nobody is really dealing with. So we end up with situations where, you know, for her son, you know, simple physical contact is seen almost as a precursor to a sexual assault, where, in effect, it may be just simple physical contact in most cases.
And - which I think sort of goes back to this, you know, I have a friend Donna, who's on the spectrum, has Asperger's syndrome. And we were discussing social events one time and she commented that, you know, if you neurotypicals have all the skills, why don't you adapt for a while, damn it? And I really started to think that, you know, we wouldn't, I guess - and she said, if I was a person who used a wheelchair, you wouldn't say, well, I'd love to hire you but you have to walk first. And we often do that to folks on the spectrum because we fail to address the issue of translating to the other side. What do neurotypicals know about people with autism? What can they do to better interact? How can they understand this person? I really think we're missing a big part of the equation when we don't do that.
What is it like when two young people with Asperger's syndrome fall in love? The New York Times' Amy Harmon has written a moving and important article about the relationship between Kirsten Lindsmith and Jack Robison. In a piece richly illustrated by video clips and photographs, we see the joys and difficulties the young lovers face.
I think readers will come away loving both Kirsten and Jack, who is the son of John Elder Robison. They are both intelligent, attractive, charming, and quirky. Physical intimacy is difficult for them, as it is for many aspies:
From the beginning, their physical relationship was governed by the peculiar ways their respective brains processed sensory messages. Like many people with autism, each had uncomfortable sensitivities to types of touch or texture, and they came in different combinations.
Jack recoiled when Kirsten tried to give him a back massage, pushing deeply with her palms.
“Pet me,” he said, showing her, his fingers grazing her skin. But Kirsten, who had always hated the feeling of light touch, shrank from his caress.
“Only deep pressure,” she showed him, hugging herself.
He tried to kiss her, but it was hard for her to enjoy it, so obvious was his aversion. To him, kissing felt like what it was, he told her: mashing your face against someone else’s. Neither did he like the sweaty feeling of hand-holding, a sensation that seemed to dominate all others whenever they tried it.
Harmon takes the time to get the details right, like when she explains Kirsten's difficulties with a previous neurotypical boyfriend:
But she also chafed at his frequent instructions, which required constant, invisible exertion to obey. And she despaired of ever living up to his most urgent request: that she share her innermost feelings with him.
“Just don’t filter,” he said one night, lying in bed with her.
“It’s like the blue screen of death,” she said, describing her difficulty conveying her emotion with a widely used term for a Windows computer crash. “There are no words there.”
“You’re not a robot,” he insisted, intending to comfort her. “I know you can do this. You’re a human being.”
But not, she thought, the kind he wanted her to be.
I have heard fragments of that conversation in many of my conversations with people with Aspergers, and throughout my own life.
If we want full inclusion in society, we need many more stories like these, that tell general interest readers that we are people, just like them, who want and are capable of love.