Sometimes autistic people hurt ourselves.
This is very upsetting.
“No Emma! You cannot hurt yourself,” I say as though this were a natural thing to remind such a young child. Bewilderment overwhelms my shock. Emma stands up and wanders off, leaving me with one red shoe in each hand.
This was how I responded to Emma’s seemingly bizarre actions. This was how I continued to respond to Emma when she began to bite herself. This was all I knew to do. Remove the thing that was causing damage, except that when that “thing” was her own fist or fingers or teeth I was powerless and defeated. So I begged her, pleaded with her to stop, usually in a loud, panic-stricken voice. Why was she feeling compelled to do such a thing? Was it a deep need for sensory input? Did her head hurt? Was she trying to cope with internal pain caused by some outside source – the daylight streaming in through the window, the heat from the radiator, the clicking noise the steam heat made as it surged through the pipes, was there some noise only she could hear that bothered her, did the fabric from her tutu itch or dig into her skin, or was it something else that I couldn’t see or understand?
Ariane asked autistic friends to help her understand:
Last summer I spoke to my friend Ibby who explained why yelling at Emma to stop hurting herself was not working. ”It’s a lie,” Ib said. She explained that by telling her she “couldn’t” do something, something she’d just done right in front of me, as evidenced by the teeth marks on her arm, was a lie. A lie that made no logical sense. So I stopped saying things like that. Soon after I stopped yelling at her, I realized that anything I said could be heard as scolding, judgmental and counterproductive, especially when done in a loud voice. Now that I have a better understanding of language and how language can come and go, I understand it isn’t just Emma’s ability to communicate, it’s her ability to understand all verbal communication. All spoken language, both hers and anyone else’s goes out the window.
I have to stop talking. This is counter intuitive for me, but it’s key. Stop talking. I have to remind myself of this. If Emma is in the midst of an upset where she has begun to bite herself, no amount of logic will prevent her from biting mid-bite. When Emma is biting herself this is an indication to me that I need to be quiet. Sometimes she will come to me and allow me to put my arms around her in a firm embrace, other times she will reject all contact. In the midst of an upset I have learned the single best thing I can do is – nothing. No words, no physical contact, nothing. I remain nearby and I wait for her to come to me if she needs or wants to. Once she is calmer, I have a chance at figuring out what led up to the upset… maybe. Once she is calmer I can try to see if there’s a pattern so that I can interrupt it next time before she gets to the point where biting herself seems like the only solution.
The single most unproductive thing I can do in the midst of Emma’s upset is to scold, admonish, restrain and judge her. This may seem obvious to many of you, but it wasn’t obvious to me.
I am not surprised that no reporter was willing to admit to having written this article about how some research comparing women, men, and men with Asperger's syndrome supposedly proves that women are better at reading emotions than men are. It's a nearly perfect example of the sexism in how autism research is reported.
Gender bias begins with the design of the experiment itself. Failing to collect data from women with Asperger's syndrome does several things that distort the actual results. It marginalizes autistic women, treating their experience as not significant enough to study and guaranteeing that our understanding of what autism is is shaped mostly by the experiences of boys and men. It also produces results that the scientists expected, and probably wanted to see: when it comes to recognizing emotions, women are faster then men, who are faster than autistic men. This seems to confirm the idea that autism is "the extreme male brain."
The headline, and the article itself, make the common error of confusing what is being measured. The experiment measured reaction time, not how hard it is for men or women to read emotions. Faster does not mean better. More areas of the brain activated does not mean harder.
Scientist Stephen Lawrie knows that by saying colorful things he is more likely to get himself and his work into the paper, and he knows that no one gets in trouble for saying sexist things that brand men as inferior to women:
"We chose relatively strong expressions so slowish blokes could do it," said Prof Lawrie.
"If we had been more subtle, some of the men might have started going wrong..."
Prof Lawrie said that for men to achieve the same results as women in social situations, they probably had to think harder.
But this idea that women are better at "soft" things like feelings and men are better at "hard" things like math, can also be seen as an expression of bias against women.
It's wonderful that NPR talked to an actual autistic person when doing this story about the shortage of autistic brain tissue for research.
It's very sad that that autistic man, Jonathan Mitchell, views his own brain as "damaged":
Here's how Mitchell describes life with an autistic brain: "It's prevented me from making a living or ever having a girlfriend. It's given me bad fine motor coordination problems where I can hardly write. I have an impaired ability to relate to people. I can't concentrate or get things done." He adds that part of his day is spent engaging in a self-stimulatory behavior that involves shaking a pencil and some shoelaces at a certain frequency while he rocks back and forth.
Mitchell lives in Los Angeles. He has a degree in psychology and used to work, at times doing things like data entry. "But then I got fired from so many jobs, I ended up retiring and being supported by my parents," he says. Mitchell says he was fired because employers thought he was too loud, made too many mistakes and smelled bad.
Like a lot of people with autism, Mitchell is unflinchingly honest. When I say he sounds angry, he says "Yes, I'm very angry and very embittered." When I ask why he decided to talk to me, he responds that he's "a little self-centered and superficial and a little bit of a publicity hound."
What's the worst part about having an autistic brain? "The celibacy," he says. "The loneliness. The isolation."
It's even sadder that NPR did not talk to anyone who thinks autistic people are not broken or that we might have something to contribute to research before we die.
I can pretty much tell that I'm wasting my time talking to a parent if he or she says something like, "I have a child with autism. I love him with all my heart. I could never, possibly be bigoted against people with autism. It's very cruel and hurtful for you to say that!"
Because here's the thing. I'm autistic. I can be bigoted against autistic people. I'm gay. I can be bigoted against gay people. When I was visiting my parents, and volunteers from a gay rights group came to the door, my dad rolled his eyes, in front of his openly gay son, and said, "I don't think we need to listen to that." When my mom told my aunt recently about my autism, my aunt immediately started talking to me about how violent autistic people are. You may think your family is better than mine, but I think these things just run deep in society, and we're part of it.
My domestic partner Max is my favorite person. He's smart, funny, handsome, sweet. He's also been in great pain for much of the past week, with an infection that required him to spend one night in the emergency room and may require additional hospitalization. As we fight these things, I think how fortunate both Max and I are that we do not have AIDS, that we are still alive.
People want to forget how many of us died.
They want to forget the murderous silence of our governments.
They want to believe that the gay men who died of AIDS in the 1980s were so promiscuous and irresponsible that they more or less deserved it.
I am reminded by the comments on this Towleroad piece on the recent death of New York City mayor Ed Koch that there are many gay men who want to believe that their brothers who died, who are still dying of the plague, were totally alien from themselves. I'm guessing that lots of those guys would respond like those parents who drive me crazy do: "I can't possibly be bigoted against gay men. I'm gay. But those guys died because they were irresponsible."
My friend Dean, who died when I was 25, was infected by his first boyfriend when he was sixteen. Not in a bathhouse. Not with drugs. Young love. And he died. He was a good guy, so much nicer than me, would have made the world so much brighter.
He was not garbage.
He did not deserve to die.
And no one deserved to die as David France describes gay men dying by the thousands in New York City:
We regularly received phone calls from St. Vincent patients complaining that staff members fearing the disease was airborne refused to bring them food, instead piling their trays outside their doors, or that terrified nurses wouldn’t bandage their wounds or change their soiled linens. It was like something out of a Saramago novel. I personally brought this information to Koch myself, as the first journalist with gay-media credentials to address him in a Blue Room press conference. He responded explosively. “Don’t be ridiculous,” he told me.
Those were the early days. As the epidemic mushroomed, the city’s hospitals simply ran out of space for all of the patients, and again he was silent. Deathly ill people were routinely turned away. At some hospitals, patients were lined up on gurneys along the emergency room hallways for days on end awaiting medical care that never came. When things went south, we all knew there was only one funeral home in the city — the gentle people at Redden’s on 14th Street — where we could bring our friends’ remains.
I do not recall Koch ever acknowledging these medieval conditions. He surely never took action, nor did he spare an ounce of sympathy for us in the trenches, not in public at least.
What does this have to do with autism?
Charli Devnet's piece about "The Dark Side of Aspergers" is what it looks like when members of a marginalized group have absorbed the biases of the majority:
If Adam Lanza had only destroyed himself, no one would have noticed. He would have silently departed this world, leaving “few footprints in life,” as the New York Times put it. If he had only killed his mother, well-meaning people would have shaken their heads and said exactly what they said about my neighbor, that here was another troubled young man who “snapped.” It is because Lanza exploded in such an unusual, deliberate and almost apocalyptic way, that we are so shaken. If we allow that Lanza might have been on the autistic spectrum it might help us take a candid look at the dark side of living on the spectrum.
Aspies are prey animals, said Tony Attwood at an Asperger’s conference in 2012. We are much more likely to be victims than villains. Wounded prey may, however, grow desperate and strike back. A lifetime of being bullied, rejected, and relegated to the periphery of life can give rise to anger and bitter fantasies of revenge, especially perhaps among lonely young autistics that have grown up in a culture where violence is glamorized and who may turn to perfecting their skills at violent video games in lieu of a social life.
"Self-hatred" is most common term for this, I think, but that seems wrong to me.
Autistic people and gay people, etcetera, are part of a world which is biased against us.
There is no good reason to think we should be immune from that bias, and we don't have to hate ourselves to experience it.
Max is older than I am. He has been openly gay for about as long as I have been alive. He has fought courageously and successfully for our rights. He was one of the first who got top security clearance when President Clinton reversed the ban on gay people having it in the 1990s. And he still carries bias against gay people
I disagreed when people went to court to try to get Proposition 8 overturned after it made same-sex marriage illegal in our state. I like elections, and I think ultimately minority groups win by making elections stronger, not by trying to undo them when we don't like the way they go. But what happened in the trial was that gay people laid out the difference that having full access to marriage made in their lives, in their status, in the eyes of their families.
Max is my domestic partner. It is not yet legal for him to be my husband. And he needed that trial to understand that separate but equal is not okay. He needed legal testimony to lose that piece of his bias against people like himself, after decades of fighting for our rights.
Think about that.
And don't tell yourself that you can't be biased against autistic people because you are one, or because you are related to one.
I had to get my computer fixed, and it seemed like a good idea to use that as an opportunity to take a little bit of a breather. Lots has happened, even some fairly important news, but before going on to that I want to annoy everyone by comparing autistic autism parents to bisexuals. As I wrote recently, the LGBT communities are my primary metaphor for understanding the autism communities. At that time, I was focusing on the power difference between transgender people and gay people, which is in some ways similar to the power difference between autistic people and parents of autistic people. Today I want to talk about the B in LGBT and the autistic parents of autistic people.
Everyone gets annoyed when you talk about privilege, and even more annoyed when you talk about bi privilege.
When gay people talk about bi privilege, it annoys the hell out of bisexual people because they don't see themselves as having privilege:
Bi girls who date mostly men aren’t straight. They’re still victim to homophobia from other girls and fellas. Even if they’re with their gaggle of girlfriends, tanning at the beach and people watching, they have to watch what they say. To maintain the facade of normal - to pass as straight - they are always policing their actions. If a group of girlfriends are commenting on hot boys at the mall, they have to be careful not to mention a girl, and brand themselves as bi all over again. It’s like always being in stealth mode. One wrong word blows your cover.
Constantly watching what you’re saying so you don’t offend the gay/lesbian community or the straight community isn’t privilege. And there is a lack of bi spaces where we can just be ourselves, because finding other bi people who aren’t in stealth mode is scary and hard and involves constantly constantly coming out.
Being bisexual is in many ways harder than being gay, because it's a smaller minority and because it's less easily defined. One of the reasons I tend to avoid adding a series of Qs after LGBT is that I think most of those Qs actually mean "bisexual", and people want to use them in part because of their own prejudice against bisexual people. Although I'm gay, I've led a bisexual life, having been married to a woman for over a decade. I don't doubt that bisexual people exist or that they have unique problems.
But sometimes bisexual people really get on this gay man's nerves.
Just like sometimes autistic parents of autistic people really get on this childless autistic man's nerves.
Not that I doubt their existence, their wisdom, or the value of the dual perspective they bring to the autism communities. We need to hear more from more people who know both what it is to live with autism themselves and to parent people who also have it. One of the reasons I often share from you work from my friends like Adam and Paula is that they understand things that I cannot. Adam and Paula also do not use their diagnoses as cudgels to attack other autistic people. That's happening more and more, and it's bigotry.
It reminds me of bisexual people who do not see their own bias against gay people. Once I was at a retreat for gay, straight, bisexual, and transgender people. Several bisexual people there were angry because a previous event, hosted by a gay men's group, had not been welcoming to them, although it was advertised as such. They were especially upset by a slide show at the beginning, which had featured only pictures of gay men-- no heterosexual couples, no women. They were angry that they had been forced to sit through a five minute presentation that included no pictures of people like themselves.
And I agreed that that was not welcoming and that I would have pushed for a more inclusive range of images had I been involved.
But I also asked them to think for a minute about what it is like for gay people to watch TV or go the movies. I don't see images of gay couples 99% of the time when I am asked to sit through anything. When I was the age of the people complaining-- 20s-- there were never images of gay male couples anywhere but media specifically for gay men. The guys who put together the slideshow were my age and older.
And, again, they messed up, but, in a world where the NBC affiliate in Utah still won't show a sitcom about a gay couple, I have a pretty low opinion of anyone who complains that there were no mixed-gender couples in a five minute slideshow.
I have similar feelings when parents who visit thAutcast complain that it is not sensitive enough to them. That I am too angry or that I need to try harder to see things from a parent point of view. Because they aren't getting the same thing those bisexual kids weren't getting: you have the whole world for the feelings of autism parents to be taken more seriously than those of autistic people. There are dozens of good blogs run by parents. You have Autism Speaks and Parenthood and plenty of other places to go where your feelings come first. And every time you turn on the TV you will see heterosexual couples in their twenties. There don't have to be couples who look like that in every slideshow, and it's okay for there to be autism sites on the Internet that are actually more focused toward autistic people than their parents.
This insistence that a minority-run space must never offend the visiting majority is pretty much the definition of privilege to me.
Things get uglier when people in the mixed-status group attack people in the low status group for complaining about bigotry.
Once I wrote about how angry I was that someone embraced a movie that used anti-gay bigotry for laughs while reacting furiously against the fact that another movie used bigotry against people with Downs syndrome in a similar way. Two different women wrote to tell me that I was wrong to be as upset as I was by the word "faggot", and they knew because they were bisexual.
No, they don't.
A bisexual woman in a heterosexual relationship has exactly the same right to tell me how offended to be about slurs against gay men as I do tell her how offended to be by sexism: none at all.
A fully employed autistic person who has been able to maintain a marriage for many years has no business telling autistic people who have not been able to these things that they are too angry and need to be nicer to parents like themselves.
And I never want to hear again that that best representative for autistic people, male or female, has to be someone who has a child on the spectrum. Yes, people like John Elder Robison who have that dual perspective should continue to be involved and make their voices heard. But people do really say that parents should be the only autistic people at the table, or the only people actually listened to.
And that should stop.