Lydia Brown describes what being "So High-Functioning" is like for her:
When I speak in openly Autistic ways, move in openly Autistic ways, convey my thoughts and ideas and feelings in naturally Autistic ways; when I'm outed or out myself, when I lose (temporarily or permanently) the characteristics that let me pass or that get me labeled high-functioning; those are the times when I'm stuck between a rock and a hard place. (There—a metaphor. "But I thought people with autism have no imagination and don't understand metaphor." There's a good phrase for someone like that in Egyptian Arabic—ruuh fi siteyn alf dahiya.) Those are the times where I cease to be "that high-functioning person" or "wtf she's autistic" and simply become "wtf is wrong with her."
Some days I pass all day long, and consequently, no one questions my intelligence, abilities, competence, or qualifications. Other days, I'm stuck in a room full of hameer (donkeys) who've pinholed me onto the "high-functioning" end of the false dichotomy of "low/high functioning" because OHMYGOD I CAN SPEAK AND I GO TO COLLEGE I MUST BE SO HIGH FUNCTIONING. But I don't feel neurotypical, ever, and I don't feel "high-functioning." Some days I laugh hysterically at the idea that people actually believe this bull and think of me as "high-functioning" and Amy Sequenzia as "low-functioning." And other days I just want to cry because it hurts so much.
When you demand that disabled people work to pass as able-bodied or neurotypical at the cost of sacrificing supports, services, and accommodations that mark us as divergent from those with dominant abilities and neurologies, you are forcing disabled people to hold themselves to impossible and destructive standards.To say that the ultimate goal or outcome for a disabled person should be a life with as few supports as possible is to deny the reality of both the disabled person's needs and abilities. In the case of a Deaf person, for example, the ultimate end of that suggestion would be forcing Deaf people to cease to communicate in Sign and to learn oralism even at the expense of comprehension and effective, reciprocal communication solely for the sake of appearing at first glance to fit more neatly and conveniently into the fabric of a majority hearing society without regard for the language and communication that come naturally to the Deaf person.The suggestion that the ideal outcome for disabled people is a life with as few supports as possible is one deeply rooted in ableist attitudes—namely, the idea that it is bad and shameful and negative and unfortunate and pitiable and tragic to require supports outside the norm or outside of what is typical for those in the dominant group. But what's shameful about having a note-taker accompany you to classes? Or having flexible work hours or a telecommuting option? Or having additional time between tasks? Or using an alternative or augmentative communication device? The only shame and stigma that exist are societal constructs embedded in systemic, institutionalized ableism that colors our attitudes. And if there are shame and stigma attached to having visible or conspicuous support needs, it seems far more logical to combat the attitudes that create this shame and stigma than to urge disabled people with support needs to avoid using any overt or noticeable supports.
Lydia Brown's list of rules for How to Talk to an Autistic Adult is thorough and intelligent:
8. If you are speaking to an alternative and augmentative communication user (i.e. an adult who communicates using picture cards, signs or symbols, a letter board, or by typing), give him, her, or xir even more extra time both to formulate responses and to produce them. AAC takes longer than speaking, so make sure that the adult is actually getting equal time to "speak."
9. If the adult has a personal assistant, caregiver, parent, or staff person accompanying him, her, or xir, do not speak to the Autistic adult through the other person or ask that person questions about the Autistic adult. Address the Autistic adult directly.
10. If the adult has a service animal, such as a dog or a cat, do not touch, call to, or make sounds at the animal without explicitly asking the owner for permission.
Lydia is a little more dogmatic and politically correct than I would be, but she knows a lot more about communicating respectfully with a broad range of autistic people than I do.
So I will add only one thing:
Please do speak with autistic adults. Don't demand that we speak back, and please be sensitive to signals that we may not be able to handle conversation at a particular moment. But please also be sensitive to signals that we do want to talk.
And please try to be especially open to conversation with people who have communicative differences or intellectual challenges. There is a tendency, even among some parts of the autistic community, to make the assumption that because communication is laborious for some people, they would really rather just be left alone. My experience is that this is rarely true.
I have also found that people who communicate in different ways or who have the kind of intelligence that does not show up on IQ tests often say things that stun me with their wisdom.
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.
Some reactions from the online autistic community to the murder of 4-year-old autistic Daniel Corby by his mother.
All attempts to explain this tragedy hide from view an essential fact about becoming a parent: In having a child, you make a commitment that, even if you end up in the worst extremity, you’ll protect the child’s life. That’s a basic, sacred trust. The child didn’t ask to be born, didn’t ask to be difficult, didn’t ask to be disabled. When people don’t speak to that commitment and that trust, but start talking about how difficult the child was, and how the parents lacked services, I get really scared. Because there will always be people without adequate support. And if people can’t simply say, “I don’t care how bad the parent’s life is. The parent broke a sacred trust with the child and had no right to do so,” I don’t see that there is any protection for disabled people at all. It’s very frightening to me. It means that I live in a society that is nothing short of barbaric.
When a four-year-old child is drowned by his mother, it’s not the time to wonder why she did it. It’s time to condemn that she did, and it’s time to look at how much we devalue disabled life that a mother thought her life would be better with her son dead.
Because the problem isn’t the lack of services. The problem is the devaluation.
Yet in the cases of disabled victims, the media does not speak up for the victim. Even when the killers have confessed or when it is obvious who the murderers were, the media pours sympathy onto the murderers. Articles about these cases emphasize how stressed the murderers were with the burden of having a disabled family member. They emphasize how difficult the victim was to live with and how the victim's deficits and challenging behaviors drove the murderer to the edge.In short, society blames the victim and exonerates the perpetrator.This is the same thing as blaming a woman for her rape because she wore a short skirt or had a low neckline on her shirt. It is the same thing as blaming a Sikh man for his assault because he wore a turban. It is the same thing. There is no difference.
You don’t know how hard it is to live with autism when your life may be in danger at any moment if a family member or someone decides to abuse or kill you. You don’t know how hard it is to die with autism. …….. and the matter is made worse by the news media tending to repeat the “it’s so hard to live with autism” or “the person was low-functioning,” or wore headphones. Wearing headphones or being afraid of dogs is not an excuse to kill a human being.