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December 17, 2011 / Amanda Forest Vivian

Pulling Rank and Involuntary Assimilation (July 2009)

[My domain is expiring and I have a few really old really long things about disability on there so I figured I would trundle them on over. I’m not editing this just because I wouldn’t know where to stop.]

When I was fourteen, I received a diagnosis. For a lot of my life people had been concerned about me. My first-grade teacher, and a few other people, thought that I had suffered some kind of abuse because I became so angry and withdrawn. When I was ten I was diagnosed with PDD-NOS, atypical autism, but no one told me, and although I self-identified as “weird” I don’t think I thought anything about my personality was wrong. When I was about twelve my parents mentioned that I might have Asperger’s and began reading a lot of books about it, as well as other things like Indigo Children and auditory and kinesthetic learners. I did not have a very good time from then on, for reasons that had everything to do with how I was and not much to do with how a psychologist would describe me. I also knew that the fact that I had so much trouble put a strain on my parents, which annoyed me. I was quite happy for a person being treated the way I was on a daily basis (which isn’t to say life was wonderful, but it wasn’t awful). I felt that my parents acted like I was the family problem, and I thought that was unfair. When I was fourteen and went to a diagnostician, my mom told me that the doctor didn’t think I had any disorders. This reassured me that my parents just got worked up about me over nothing. A few months later, when my mom criticized something strange that I did, I countered that I didn’t have anything wrong, the doctor said so. My mother said that in fact the doctor had diagnosed me with AS.

Somehow, I read the doctor’s report. I guess I must have found it–although maybe my mom did let me read it, who knows. I noticed the doctor listed as symptoms my lack of friends and the fact that, when I was asked to make up stories, they were “notable for themes of social failure and rejection.” This phrase kept repeating in my head a few days later, when I’d been on the receiving end of some especially brutal sexual taunting. Although I couldn’t talk to anyone about what had happened and had trouble even writing about it, it was obvious to me that it was wrong. It was obvious to me that everything that happened to me at school was wrong. The comments in my report made me angry; it seemed to imply a cause-and-effect relationship. I had Asperger’s, so this stuff happened to me. It was normal, even deserved.

Presently, I am a grownup with minimal social, communication, and self-care deficits–nothing I require accommodation for. I just have to make sure I have extra energy and extra time when I can’t afford to screw up. And I’m only twenty, so I expect to do even more catching up and hopefully end up at the same functioning level as everyone else. This summer I’m interning at a school for kids with autism and PDD-NOS. Some of the kids don’t talk. Some are learning to talk. Some have learned how to talk really well, but you can tell it didn’t come easily; they speak English like it’s a foreign language, wrinkling their foreheads in concentration and sticking with phrases they know are correct. Two of the kids at the school talk the way most kids do–excitedly, quickly. They are the only kids in the school who ever talk too much. I’m going to pretend their names are Danny and Ruth. Danny is seven and I think Ruth is eight and I would assume, though I don’t know, that neither of them had the kind of speech delay most autistic kids have.

I’m interested in Danny and Ruth not because they are more like me, but because I think they illuminate a particular issue in the helping of ASD people–and by helping I mean, what constitutes helping? If a person has trouble understanding how to relate to other people, what exactly are the rules he should be taught? If you want to improve the life of an ASD person–the general aim of this school’s teachers, and my diagnostician’s report–what exactly needs to change for her life to be better?

It seems to me that this school wants to change two things: their kids’ abilities (language, knowledge of social situations, daily living skills) and their kids’ behavior (word and subject choice, manner of speaking, ways of moving, ways of making sound). It’s easy to understand what changing a person’s abilities looks like, since that is the aim of all schools. For examples of changing behavior, I’ll mostly stick with Danny since he’s the kid I spend the most time with.

Danny talks in a high-pitched voice when he is excited; he is told not to talk that way, and eventually punished (by being denied a favorite activity) if he does not speak in a lower voice.

Danny leaps around when he is excited; he is told not to or a teacher puts her hands on his shoulders to signal what he is doing wrong.

Danny uses odd or incorrect words (often intentionally); he calls the barbershop the “hair shop” and movies “presentations;” he is told to use the correct word and if he uses the wrong word a certain number of times he is punished.

Danny loves to talk and write about subways; he receives the same discouragement for this that he does for using the wrong word.

It’s obvious that none of these activities keep a person from learning (assuming Danny doesn’t jump, talk about subways, etc. during group lessons–but he generally doesn’t). In the conference room I found a book that had a section on neologisms–that is to say, made-up words. “It is their persistence in autism that defines them as abnormal,” the book said. Exactly–Danny is discouraged from neologisms and other behaviors not because they’re objectively bad, but because they look autistic.

Not that anyone uses the word autistic. The kids refer to the school as “the charter school,” or by an acronym. I don’t know to what extent the kids think of themselves as disabled, or know that their school is different from other schools. When kids jump up and down or flap their hands, their teachers say “Stop that, it’s silly;” Danny is told that neologisms are “goofy” and “weird” and “don’t make sense,” and when he uses them he’s reprimanded for “silly talk;” one teacher tells him it “drives her crazy” to hear him talking about subways (and, recently, jellyfish). So what Danny gets out of it is not that the things he is doing are wrong for some objective reason, but that he shouldn’t do things that bother his teachers. Which sounds nice, except that Danny is doing things that bother him all the time. Don’t misunderstand me–he needs to learn those things. But it seems unfair that a kid who says holding hands makes him tired holds hands for a whole half-hour walk to the swimming pool, and his teachers can’t muster up the energy to listen to one subway story.

A possible counter to this is that teachers are always in charge of things, even in regular schools. So there’s nothing unsavory about the attitude that Danny’s teachers’ feelings matter more than Danny’s feelings do. That would make sense–except that in certain situations, Danny is encouraged to put his classmates’ feelings ahead of his own, too.

Ruth is very high-functioning. I’m actually not sure how she got the kind of diagnosis you need to get into this school; she seems like a kid who is unusually dreamy and bossy, but not to the point of needing special ed. I don’t know her that well, though, and ASD girls are notorious for not looking as autistic as they are, so I’m not trying to cast aspersions on the accuracy of her diagnosis. What I’m trying to say is that Ruth is not prone to jumping around and carrying on about her interests to the extent that Danny is. Additionally, she has no qualms about telling Danny when she finds his behavior “weird” or “annoying.” When Danny excitedly told her a joke with no punchline (one of his programs is learning and reciting knock-knock jokes, but he often takes them in his own dry direction), Ruth said, “I don’t get it, Danny…It’s annoying.” In leapt all of Ruth and Danny’s teachers: “Danny, listen to Ruth. Don’t tell Ruth jokes that annoy her. Only tell the jokes Allie teaches you; don’t change them. Ruth, good job telling Danny he was annoying you.”

Walking home from the pool, Danny did his jellyfish dance over and over. (He’d wanted to show it to me in the pool, but had been forbidden, just before he went in, from saying or doing anything jellyfish-related.) The jellyfish dance involved bending and touching his foot, apparently in imitation of a scene from Spongebob Squarepants. Ruth looked on disdainfully as Danny lurched and hopped down the street, and finally announced, “Danny, it’s really annoying how you keep doing the jellyfish dance and talking about jellyfish.” She wrinkled her nose to add extra punch: “It’s kinda…weird.”

Ruth, like I said, is super bossy. She has a tendency to loudly reprimand her classmates for infractions such as sitting in the wrong seat or using a toy she wants. Ruth is normally corrected when she does this, and punished when she persists in lording it over the others. But in this case, the teachers vindicated her complaint about Danny. The kids are rewarded for saying positive things about each other’s clothes and behavior; but in this case, Ruth was encouraged when she said something negative about Danny’s joke, which she took as license for even more snarky criticism later.

This seems to me to be a privileging of the normal over the autistic, where a person can change status by adopting certain behavior and preferences. Autistic Ruth and Danny must submit to their normal teachers’ preferences; the other kids don’t have to submit to Ruth’s preferences when Ruth’s preference is an autistic one like having a favorite toy; but when Ruth’s preference is normal and Danny’s behavior autistic, it is no longer rude for her to bluntly state her opinion.

I think it is bad policy to tell a child he is being “weird” or “silly,” and to encourage other children to join in. It seems like bullying. The teachers care about the students, but it has always been possible to bully someone you care about. I’ve been in friendships, on both ends, where one person criticized the other into self-consciousness without really thinking about how rude they were being. It is a habit one should try to avoid, and for kids with social disabilities it’s especially important to model good relationship habits. There’s another aspect that bothers me, and I’m sure you can guess what it is: the “acceptable” bullying is bullying of a person with autistic behaviors.

I’ll allow that behavior can be discouraged in ways that don’t have these implications (for example, instead of saying that Danny’s subway talk is silly, weird, or crazy-making, they could just tell him it’s not allowed). But I question whether eradicating autistic-looking behaviors should really be a goal at all in a school like this. The idea that autistic behavior is innately bad holds no water, so I’m not going to waste time arguing with it. I assume the reason Danny’s school takes a hard line is because they want to protect their students from bullying, loneliness, and discrimination, and think that looking normal will help.

I’m not convinced this is true. Do you know what Uncanny Valley is? It means that R2D2 is cute, and anime characters are cute, but robots and CGI characters that are designed to look as human as possible are completely terrifying. It is charming and interesting to see something that looks a little like a person, but when something looks almost flawlessly like a person all you can see is what’s wrong.

I have known (including myself) six ASD people who were mainstreamed–that is, they were surrounded by people who didn’t have disabilities. The six people had diagnoses of Asperger’s and PDD-NOS, and were (when I knew them) between the ages of fourteen and twenty-three.

The two people in my sample who were extremely socially successful (having a large amount of friends and being well-known in a generally positive way) were not the two people who were best at passing for normal. In fact, they were both very autistic-looking. They both talked in noticeably strange ways; each had odd favorite phrases and used them a lot, often spoke in a funny voice, and used sentences that sounded somehow wrong for the context, or for a person their age. They both moved in unusual ways and looked very serious and scared all the time, though in fact they were usually happy.

Both people were known for great talents, but it wasn’t that other people put up with their strange behavior because they were impressed by the talent. People thought that their ways of talking and moving were funny, interesting, and cool. At the same time, people knew there was more to them than the way they moved and talked, and their affection for the strange moving and talking was just part of their larger affection for the two AS people.

I think part of the reason the two most flamboyantly autistic people were the most popular could be that they were so flamboyant. Here are some guesses as to how this would work:

Normal-looking AS people can be very shy and nervous because they’re wondering if other people have noticed something’s wrong, and how they might react. The two popular AS people knew that everyone could tell they were weird already, so it was easier for them to be outgoing.

In a similar vein, the kind of people who were willing to spend time with the popular AS people thought, by definition, that weird people were appealing. A person who has trouble dealing with weirdness is not a good person for an ASD person to know. Perhaps the popular AS people were so successful because potential enemies never got to know them in the first place.

As I mentioned, I think Uncanny Valley is a factor. If a person looks normal but is really AS, they usually at least look nervous, and sometimes they still have some surreptitious AS behaviors. This leads to people being generally unnerved, and/or making up a motivation for the odd behavior. For example, one of the least popular people in my sample was often talked about behind his back because he had a habit of staring into space and smiling. People thought that he was staring at them and they said he was creepy. He was shy and spoke in a quiet, restrained way; people didn’t notice that he had a disability, but this was hardly a good thing, as their perception of him as normal caused them to have an unfairly negative opinion of him.

AS is a disability and even a high-functioning person screws up sometimes. A person who looks normal doesn’t get the kind of extra help and understanding that an autistic-looking person does.

I’m not trying to say that everyone should be flamboyantly autistic. The two boys I know were lucky to attend the schools they did; in the wrong set of circumstances I’m sure things could be (and have been) very hard for them. However, the fact remains that I, a more normal-looking AS person, have never been as stratospherically socially successful as they were when I knew them, and this unbalances the equation of normal-looking = safe and happy.

Compared to these two, I am only Reasonably Okay–I have eight good friends and about fifteen people I would watch a movie with. I am getting better at tasks like talking to professors and getting a job. Improvement has sometimes involved trying to look normal, but not always. One problem with trying to always look normal is that when you can’t do something in a normal way, you have to then refrain from doing it at all. Sometimes the thing you can’t do is important, like asking for a college recommendation. In this case, I think it’s best to figure out how you could get away with doing something weird. My goal is to be perceived as an eccentric normal person, to get as much social privilege as possible but still get away with being weirder than a standard normal person. Once again, this is not the right goal for everyone. It can be frustrating and is probably harder to pull of if you’re a guy. What I’m trying to say is that you should use trial and error plus your own personality to decide how normal you should act for the maximum amount of safety and happiness.

If I had my way, schools for kids with autism would only teach skills and stop kids from biting themselves. I don’t think that you should decide for a kid whether the kid should suppress autistic behaviors, because you don’t know how the kid will turn out to be. It’s especially ridiculous to do this with a kid who can’t even talk well yet, and might never learn to talk well and thus always look autistic–but even with a kid like Danny who is almost certainly going to have a mainstreamed life, I still think it’s a bad idea. Danny might turn out to be the kind of ASD person who needs to move his body in certain ways or he gets very upset. It might happen that when he struggles to avoid “weird” words or subjects, he doesn’t have much brainpower left for his college courses or his job. And even if he does function fine under pressure, he might come to the conclusion that he doesn’t like having conversations when he can’t mess around with language and perseverate–in which case, I’m sure, he can head to the nearest comic book shop to find friends. Or he might end up a really normal-looking person who finds the benefits completely worth the effort. But no one knows now.

I think the ideal way to deal with autistic-looking behaviors is that, when an ASD person is preparing to be mainstreamed–switching from the charter school to a regular school, or interviewing for their first job–they would receive counseling from someone like me or, preferably, several people like me, who are all happy with their lives and look varying degrees of autistic. Such people are eminently qualified to share looking-normal tips and strategies, and can offer personal examples of what can happen when you don’t look normal, and when you do. This counseling would be an information session for the young ASD person, and he could accept or ignore the advice, or pick out the parts he thought would be useful for him. The success of the counseling would not be judged by how autistic the person looked afterward, but by how much he figured out about what he wanted to do. Of course, even this isn’t really vital, since plenty of mainstreamed ASD people learn to manage these issues by their own experience alone.

The reason looking normal should not be taught like language or math is that looking normal isn’t an inherently positive accomplishment, while learning skills and information is. If there is a need for looking normal, it is socially constructed because our world does not value disabled people and thinks there is something wrong with anything that is associated with us. You can probably guess why I started this essay the way I did. I don’t think it is neutral or normal for people to chase other people around yelling sexual insults, or surround them and tell them they would be better off dead, or pretend they are going to stab scissors into the person’s eyes. (I know these aren’t very dramatic examples, but keep in mind I got off easy because I’m a girl.) I resent the implication that this kind of thing, or any kind of discrimination and abuse, is a natural side effect of having an ASD. Other people did those things, I did not do them. The other way we had a fire drill and a little boy, upset by the noise, comforted himself by spinning around outside. Kids from a nearby summer camp laughed to each other and imitated him. The boy was engaging in what is called “disruptive behavior,” but his spinning was neutral with positive intent; the malice was theirs. If an employer judges Danny as unsuitable because he rocks back and forth during the interview, it is she who has failed at understanding another person’s behavior. Danny is the wronged party and it should be his decision how to react (and the other boy’s too, if he becomes high-functioning).

At the end of my diagnosis the doctor made suggestions of what could be done to help with my problems. For example, she had noted that I wasn’t good at absorbing things visually and tried to rely on my hearing skills alone. Instead of suggesting that information could be presented to me aurally, she said I should be trained to absorb things visually. And so on–each recommendation was about what I, an anxious, insecure teenager, should be made to learn. But I think everyone should always learn, even normal people and adults. Interaction between disabled and nondisabled people should be a compromise, not an exhausting, neverending surrender.

Although I don’t want to generalize, I have to say that most of the ASD people I know work very hard, whether they’re learning to speak or learning how to go on a date. Other people could work hard too sometimes–work at understanding what is really disabling about autism and what is not. ASD people deserve to receive a good education, and that education must not be based in prejudice and victim-blaming.

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5 Comments

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  1. ianology / Dec 17 2011 6:37 pm

    There’s so much in this post – thank you. I want to know people like you who think this stuff through and care about other people’s development. I want to have discussions about this in real life too and do something about it!

  2. Kathryn Bjørnstad / Dec 18 2011 8:00 pm

    This is amazing and horrifying, especially the bits about the treatment of Danny. It’s so depressing how much this “autistic is bad” trope affects our lives from the very beginning. He wasn’t doing anything bad, but he was autistic so he got punished for it and the teachers (much like my teachers) actually encouraged other children to bully him. It reminds me of your fallacy post, with the example of the kid who gets his privileges taken away because his nurse treats his watching Thomas the Tank Engine as if he’s doing something harmful.

  3. arianezurcher / Mar 17 2012 7:43 pm

    When you write about how an autistic child is teased, made to feel inappropriate, taught to feel it is they that are fault and to blame, while children who threaten and in general are hurtful are considered “normal” says everything about our culture. The treatment of autists, the way they are misrepresented and abused are examples of how society condones this sort of behavior. I love how you end this post. Yes, we NTs must be willing to work hard to understand and if we don’t understand, to try, to learn and at the very least to listen and eventually (hopefully) become willing to enter into a civil dialogue to promote better understanding. We must do this for all our children, but particularly for those that are autistic. Our society will be the better for it.

  4. fantomeq / Mar 28 2012 9:03 pm

    Very well said. I’m wrestling with some of these issues, as I am proud to be a weird autistic and my oldest daughter is just starting SLP and OT. I just want her to be a happy person with self soothing skills and some improved gross motor skills. I could care less if she can pass as an NT, because it is the hateful world that is wrong, not us. The weirder I act, the more people will be used to seeing it, and my little Aspie button on my purse explains it all. I’m done faking NT to the point of exhaustion and panic attacks. I need to go out in public and take care of my kids and will act as weird as I need to in order to get through it.

  5. tagAught / Jan 25 2013 4:43 pm

    Your explanation of how the teachers and Ruth treated Danny honestly horrified me. He was being taught that these behaviours – some of which he might *need* to do, in order to keep calm enough to appear as “normal” as he does – are bad. If he wasn’t disrupting the class or being sef-injurious, why was he being punished? It *doesn’t make sense*.

    Okay, I can see why you came to the conclusion that you did about the teachers’ behaviour. It still doesn’t make sense. Presumably they want to help these students achieve everything they can, and reach their potential. But treating Danny like that wasn’t going to help with anything. In my opinion, they should have (if they wanted him to appear “normal”): said things like, “Danny, that might not be appropriate *at the moment*”, “Danny, how about you tell me your story later”; or suggested he leave the room for a bit so he could do his stimming…. Things like that. Things that would say, “Danny, what we’re trying to teach you is to *appear* ‘normal’; if you need to stim, or need to tell your stories, perhaps if you wait a bit?” <– Note that I'm not saying that this is *good*, but it's better than what they did. At least if they had done things this way, they wouldn't have been preventing Danny from stimming or telling his stories, just encouraged him to think more about "appropriate" timing.

    My 2 cents!

    😐 tagAught

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