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December 17, 2011 / Amanda Forest Vivian

The Problem with Popular Autism Organizations (August 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. Apologies for using the r-word as a label, I’m not editing this just because I wouldn’t know where to stop.]

The problem with Autism Speaks and a lot of other popular autism organizations like Defeat Autism Now is first of all that they are really into the idea of a cure for autism. But autism is not like having a cold, it’s just something a person is, for better or worse. There are certain diets that some people say are good for autistic people, and certain teaching techniques are definitely helpful in getting autistic kids to learn to take better care of themselves and communicate. Sometimes kids can even learn to talk really well when they couldn’t before. But it’s pretty much been proven that a regular kid doesn’t just turn autistic because of getting a vaccination, which is something that a lot of people have claimed, and an autistic kid doesn’t ever turn normal because of any medicine or any food. Being autistic is not the same as being mentally retarded, but I think it is useful to think about the fact that you would never think you could stop a kid from being retarded by giving them a particular medical treatment or a particular food. You would just try to help them do as well as possible.

Autism is probably genetic and as organizations like Autism Speaks are slowly admitting that, they are becoming really into “gene therapy,” which if you couldn’t guess means genetic engineering and/or selective abortion so that autistic babies aren’t born. I guess your agreement or disagreement with this has to do with how you feel about genetic engineering in general. I would like to point out, though, that our culture has a irrationally negative view of what it is like to be disabled and whether disabled people are happy or leading “worthwhile lives.” For example, studies have shown that people with severe physical disabilities rate their quality of life as positively as non-disabled people rate their own quality of life. Also, it is widely believed (to the extent that many disability rights advocates consider it an offensive stereotype) that people with Down’s Syndrome are universally saintly and joyful, but despite this belief over 90% of fetuses with Down’s Syndrome are aborted. How does it make sense to believe that a group of people is unusually happy, while also believing such people are better off dead? I think that in our society we are not encouraged to value the lives of people with disabilities, but instead are encouraged to feel an illogical amount of pity for disabled people, a pity that may be masking discomfort and fear about people who are different or resentment of people who need extra help.

Besides the fact that they talk about “cures,” Autism Speaks and other popular organizations do not care about disability rights even though they are supposed to be helping people with a disability. Though many Autism Spectrum Disorder people can communicate in some way, these organizations don’t encourage them to do so, and they don’t include ASD people on their boards. Their boards are mostly made up of the parents of ASD people, and their advertising talks about how hard it is to have a kid who is autistic, not how hard it is to be a kid who is autistic. The focus on other people’s inconvenience and grief at having to live with a disabled person fits right in with our ableist society. Autism Speaks could reduce parents’ inconvenience by funding schools and in-home support for autistic kids, and they could push for legislation that would offer better services to kids with autism; but instead, they just talk about how inconvenient it is as if that inconvenience is caused by autism and not by a lack of services.

When disability rights advocates criticize these organizations for presenting autistic people as miserable burdens, the organizations often pull out a very peculiar argument. Despite the name, which would seem to imply variation, they act like Autism Spectrum Disorder is just two very different disorders that people happen to think are related for some reason. One disorder is Asperger’s, which makes a person sort of nerdy, but really smart and talented, and the other disorder is regular autism, which is completely horrible and means that a person can never talk, live semi-independently, or even be happy. People with Asperger’s don’t need to be cured, but people with autism do. The funny thing about this argument is that autism organizations never say this kind of thing except when they’re talking to disability rights advocates. Anyone who has worked with ASD people knows that some kids with a regular autism diagnosis can talk quite well, for example. I know a kid who is diagnosed with regular autism, who goes to a school specifically for kids with regular autism and has parents who are involved in a popular autism organization. His parents even put him in clothes that advertise the organization. He can talk just as well as I could at his age, and I have an AS diagnosis, but no one at the kid’s school ever acts like he shouldn’t be there just because he can talk. They understand that autism is a spectrum disorder, and the abilities of autistic people are all over the map. But if this kid grows up to be a disability rights advocate, organizations like the one his parents are involved in will probably try to claim that he doesn’t have regular autism, and doesn’t understand the situation of regular autistic people.

This argument also makes me uncomfortable because it seems to try to judge how meaningful a person’s life is based on how high their IQ is, not on how happy or fulfilled the person is. I read an piece by Alison Singer, the former vice president of Autism Speaks, in which she argues that the difference between Asperger’s and regular autism is so insurmountable that it is okay to say one needs to be cured and not the other. To make her point, she compares her classically autistic daughter to a young girl with Asperger’s who is a family friend. It seems obvious that the girl with Asperger’s has a hard life. She doesn’t have friends and is a challenge to her parents and teachers because of her violent, unpredictable behavior. Singer has appeared in a video where she describes how hard it is to have a daughter who has tantrums and might attack people; but in this piece, she claims not to see any common traits between her daughter and the AS girl. She emphasizes the fact that her daughter struggles to use any words, while the AS girl is a talented writer. Somehow, Singer seems to think that the other girl’s ASD is okay because the girl is able to be a good writer, but Singer’s daughter’s ASD is not okay because, as Singer puts it, her daughter “has no skills.”

But judging by the information in the piece, it seems to me that both girls are unhappy. Singer’s conclusion that one of them has a more valuable life is based on something parents care about more than kids do–academic and intellectual achievement. You’d have to ask the talented AS girl whether she thought being a good writer was enough to make her life worthwhile when she couldn’t make any friends. Lots of talented artists and scientists have lived extremely unhappy lives and might say, if you asked them, that they would rather not have lived at all. You can’t ask Singer’s daughter whether she feels her life is worthwhile, whether a love of food or colors or her family is so intense that it makes more of an impression on her than not being able to communicate her feelings to others. I hold this truth to be self-evident: you can’t just decide, especially based on academic skills, whether a person is better off existing or not existing.

And also, instituting a dichotomy between verbal and nonverbal ASD people is an awfully convenient way of silencing people who say “I have an ASD and I’m happy to be alive.” Well of course you’re happy to be alive, you can talk, and talking is a reason to be happy. If someone isn’t talking they’re not happy. It’s much easier to assume that if someone requires a lot of services, or makes you uncomfortable, they aren’t happy; then you can just work on figuring out how to make them disappear, because its for their own good anyway. If you apply the knowledge that most verbal disabled people are reasonably happy to be alive, which would seem to indicate that the same is true for nonverbal disabled people, you have to figure out the best way for those people to be fulfilled and be a part of society, which means challenging your prejudice, which is hard. But really, I think that is the moral and logical thing to do and it is the thing that popular autism organizations are not doing. While they are well-meaning, they operate from an extremely ableist viewpoint that they have shown little interest in trying to improve.

I am an ASD person who is happy to be alive. It is not true that my Asperger’s makes me especially talented at things, and the fact that I can talk doesn’t erase how miserable I have been when I felt guilt and shame about being disabled, or when other people treated me badly or treated me as a burden. In fact most of my “talents” evolved from compulsive escapes and although they are a part of my happiness they are not the reason for it. I just happen to be happy, and for most happy people I tend to think this is the case.

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.

December 17, 2011 / Amanda Forest Vivian

Functional Stimming (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. Apologies for using the r-word as a label, I’m not editing this just because I wouldn’t know where to stop.]

This summer I’m interning at a school for kids with autism. I have to get up at six to catch my train, and last night I got home at midnight. I went to bed, but I kept thinking about how tired I’d be, and how hard it would be to focus and act normal. The longer I stayed up the more anxious I got, and the more unlikely it became that I’d be able to fall asleep. Finally at two I emailed the head of the school and said I couldn’t come (hoping this would be okay since I’m only a few days into my internship and have mostly just been observing). When I woke up there was an email saying, “Don’t worry about it.” Thank goodness.

Although the school is really amazing and really educational and fun to help out at, they have one position that makes me really uncomfortable. Across the board, they discourage the students from stimming, and reward the students for sitting in a very specific way–hands in lap or on desk, feet down, etc.

Stimming is engaged in by ASD people of all ages, but 10% of non-autistic kids do it too (and in my experience, so do many mentally retarded people). Wikipedia calls it “a particular form of stereotypy, a repetitive body movement (often done unconsciously) that self-stimulates one or more senses in a regulated manner… Common forms of stereotypy among people with autism include hand flapping, body spinning or rocking, lining up or spinning toys or other objects, echolalia, perseveration, and repeating rote phrases.” Even if you don’t know people with autism spectrum disorders, you’ve probably seen little kids expressing excitement and happiness by jumping around and waving their arms. In some people who are not easy to read, stimming can look mysterious and purposeless, but in more effusive individuals who are also smiling and laughing while stimming, it’s pretty easy for the stimming to just seem like a natural extension of the expressions most people use.

The first person I think of when I think of stimming is Mike, a guy who lives near my college and has severe MR and ADHD. My friend A.M. and I met Mike when we volunteered at his group home and at the vocational day center he attends. We all got very attached to each other, and when Mike saw us he would beam, squeal, and hold his hands against his chest while flicking his fingers out. When Mike got excited about a fair that was going to be held for local disabled people and their families, he leapt jerkily into the room where A.M. and I were sitting, holding a flyer about the fair, and continued to leap around in a stiff manner, holding the flyer up and flicking his fingers around.

My friend Clayton, who has no mental disabilities (note from the future: LOL forever), reacts to funny or exciting news by exclaiming loudly, throwing himself onto his back when he’s sitting on his bed, waving his arms around, and clapping his hands. Nothing he does sounds that strange when you describe it, but when you see Clayton, it’s obvious that his way of expressing his emotions physically is unusual for a 20-year-old guy. Clayton has cerebral palsy, which is considered a developmental disability, but I don’t have enough experience with CP to say whether CP people are known for stimming, or whether Clayton just happens to be a non-ASD, non-MR adult who stims.

I have Asperger’s, and I stim when I’m by myself. When I was a kid, I’m sure I stimmed more in front of other people, but by the time I was in my mid-teens, my primary stim was leaping around the empty rooms in my house. I’d leap through the rooms on the second floor when no one was upstairs, or I’d leap back and forth through the almost-always-empty living and dining rooms. I sort of jump/run around on my toes, with my arms bent stiffly and my hands brought up to about chest level, where I wag them up and down.

Usually, when I do this kind of stimming I’m thinking about something I want to say or write, and getting excited about it. It can feel lots of different ways. Sometimes it feels like a positive expression of happiness; sometimes it feels too good, like being on speed–like I’m trapped in thinking about something too much, or too hard, and I want to stop; sometimes I’m thinking over and over about something that upsets me, and thinking about it while stimming makes me more and more emotional and intense about it, which I guess you could see as a good or a bad thing. I’m not very conscious of what my stimming looks and sounds like–I had to take pictures of it just now to describe what I do with my hands–but I would guess that when it’s a positive expression I’m running around more lightly, and when I’m feeling too intense it’s probably stiffer and louder, and maybe louder still, almost violent, when I’m seriously upset.

Because not stimming in public wasn’t a conscious choice, but just something I found myself doing over time, my definition of “public” isn’t all that logical. Sometimes I end up bursting into a leap/run when I’m walking around campus and I get excited about something I’m thinking. Obviously people can see this, but I guess I think of myself as alone because I’m not talking to anyone. I don’t feel great about the way I stim. I wish I could stim the way Clayton does; it seems so natural and unselfconscious, just an intense expression of his feelings. I feel like I have a stimming habit, like I binge on stimming. It feels like an explosion and I feel worn out afterwards.

I remember other kids making fun of me for shaking my knees back and forth in class and compulsively touching my nose while I was reading. I don’t know if that’s how my stimming got driven underground. I just very much wish that instead of being this giant, dramatic, embarrassing thing, stimming could just be part of my life–flapping one hand while reading a book, rocking back and forth while having a conversation, jumping up and down happily after seeing a good movie.

I just went and walked in circles for a few minutes trying to get my thoughts together. That was really nice. That’s the kind of stimming I would like to do–calm. Something that makes my thoughts make more sense instead of ratcheting them up to fever pitch. Anyway, it’s really weird to be interning at this school because most of the people don’t know I have AS, and even if they did they would probably still see me as being like them, the neurotypical instructors, rather than like the kids, who all have diagnoses of Kanner autism or PDD-NOS. And it’s true, in terms of how “normal” and “high-functioning” I am now, I’m much more like the instructors than the kids in every way.

But I stim. And it makes a huge difference to me to be able to curl up on a couch or on the floor instead of sitting in a chair with my hands in my lap. I actually might have gone in on four hours of sleep, except that I need the energy to not curl up and not stim. If I didn’t need to use that energy, I might have had enough energy to observe and help with lessons. When I emailed the head of the school, I just said I would be too tired to absorb information, because I felt weird admitting that I still stim. Doesn’t that make me somehow unsuitable to be working with these kids?

I don’t mean this to come off as a blanket criticism of the school. They do amazing things, and if you have a kid who doesn’t communicate and doesn’t know how to take care of him- or herself, it’s far better that your kid goes to this school and learns those things, even if he or she is also made to feel that a harmless and unconscious habit is wrong. But I just feel very strange about it, personally, and don’t know how to think of myself when I’m in the school. It actually feels a lot like being a devout Christian involved in a conservative ministry, who happens to be gay. You love God. You wholeheartedly agree with the ministry’s goals and actions. But you also know that something that seems completely natural to you is something you shouldn’t mention to anyone else involved in the ministry.

Except it’s a little different, because no one at this school thinks that stimming is morally wrong. It’s just that, in their rigid set of rules, stimming is a “nonattending behavior” that distracts a child from learning. They have absolutely no room for the idea that stimming might be like sleeping or drinking coffee–something that can certainly be done too much, and can be a distraction/addiction/escape, but is practiced by ASD people primarily because it helps us express ourselves, helps us think, and feels good. So as a person who goes to college, has friends, makes eye contact, and appeared normal enough to get this internship in the first place, I can’t help but feel that my mere existence is a challenge to their position on stimming. I can’t help but feel that when I get on the train home and start rocking from side to side and reading a book, I’m somehow their enemy.

October 6, 2011 / Amanda Forest Vivian

Armchair Farmhouse #1: Clayton

I hope you guys don’t mind me creeping back on love-nos since I haven’t been posting here, but I am doing a PODCAST and I think it would be better to post transcripts here instead of on my regular blog, because I can hide them instead of having them appear on the main page of the blog and take up a huge amount of space.

My podcast is called Armchair Farmhouse and in it I interview people about why they do or don’t identify as disabled and what their history is with that identity. I only want to interview people in real life so I’m mostly going to stick to RL friends but if anyone reading this is near Cincinnati, you should totally let me interview you! I’m especially interested in talking to people who have diagnosed mental or physical health conditions but don’t consider themselves disabled. My first interview (which you can listen to here) is with my friend Clayton who has CP, ADHD, and general bad brains, and recently identifies as disabled but didn’t for a long time.

Read more…

August 31, 2011 / Julia

On Being Articulate

They say I’m articulate.

(I think about all the words that stay locked in my throat, and I give a small and terrified smile and look over their shoulder and into nothing at all.)

I’m really quite lucky I have such a command of language.

(There are maybe five people in the whole wide world I can talk to face-to-face without wanting to die, without having a panic attack, without needing to hurt myself or sleep for hours afterward. Two of them receive speech therapy. None of them obey the usual laws of dialogue. I know that, really, I’m lucky to have anyone at all.)

My verbal agility is a sign of something, they’re sure.

(When I’m trapped into a conversation in the kitchen of someone else’s home, I stare at the table and see nothing at all, and my throat closes and my ears ring and the world is small and distant and hot and I am agile because adrenaline alters our capabilities.)

I’m really quite social.

(If I am asked how are you I will always say fine. If you ask me anything at all I will throw as many words as I can in your general direction. I can have quiet hands but the loudest mouth, I’m very advanced, and for my next trick I’ll even ask what’s up with you.)

I can answer every question you might ever have.

(Except for what do you need or how do you feel or do you want anything or is this okay.)

I can request independently and answer yes-no questions reliably.

(I can request independently because I never make requests, which means independence, which means I must not have to but I could if I did, right? But if you ask me if I need help I will say no, and if you ask, as my hands fly around my ears and my shoulders go tight and small, if I’m okay, I will say yes because I can’t say no and if I could it would mean more talking and less space and I will say anything at all to get you to go away until my brain is my own again.)

I am verbose and prosaic in my speech.

(I am as helpless to stay silent when you speak to me as I am to move when I need to do laundry. I freeze, staring at my dirty clothes, and every cognitive break I own clamps down because I can’t, because there are too many steps, because this has been the Summer Of Laundry Wars and I have lost. But there are no steps at all in unhinging my jaw and going somewhere very far away and echoing, echoing, reciting and remixing scripts about Why I’m Not In School and What I Did This Summer and Why We Deserve Human Rights until the tape runs out.)

I have such a good grip on the English language.

(And such a poor grip on reality, going somewhere still and quiet and out of my head while my mouth turns tricks for you.)

I’m never told I’m impolite or out of place or off script.

(Bad, too serious, perseverative, disconnected, hateful, boring, too enthusiastic, dogmatic, of course. All of those. And that’s just for talking about a show I like, without even stepping on anyone’s toes. For being happy, for getting excited about something, for trying to share. For saying something that wasn’t an answer to a question. But everything’s fine, and I’m very polite, I’m very well trained.)

I can say whatever you ask of me.

(I’m very obedient.)

I’m an Acceptable Autistic.

(I never disagree with you to your face, and you’ll probably never hear about it because the gore in my stomach when you tell me I must be very high-functioning gets pulled down by the fear of quiet hands and you must not understand and I know putting yourself in other people’s shoes is hard for you.)

I’m a Forgettable Autistic.

(As a child, I didn’t cry when I broke my wrist, which meant I didn’t feel pain. I read about social skills when I was bullied, so I wasn’t mistreated. I didn’t cry when I was abused, so it wasn’t abuse. Now, I tell you it’s fine and I walk away, and maybe I sat in a hallway for two hours the other week, unable to remember how to stand, but I can tell you I’m fine so I must be.)

I’m articulate.

(So you don’t have to listen.)

August 16, 2011 / Zoe

Utopian Daydream

I can’t stop having this idea.

I keep this idea close to my chest and don’t show it to many people because I haven’t indulged in this degree of idealism in probably years.

My mom used to work as an occupational therapist. When I ask her about it, she tells me, “Everyone can do something.” My dad used to be a Marxist; he is fond of quoting “From each according to their abilities, to each according to their needs.” Disabled people have a lot of needs. We also have a lot of abilities. So here’s my idea: disabled people living together as each other’s support staff. Get a group together, and see if everyone giving what they can means everyone gets what they need.

It might work something like this: maybe you would wake me up in the morning and make sure I got showered and dressed and then I would cook us breakfast or help someone else take a bath. If I can’t drive, maybe someone gives me a ride to work and if someone else can’t talk, I could make their phone calls and if you can’t lift your arms, maybe they could do your dishes. I proofread your emails. You help me with my taxes. We lend and borrow spoons. We fill in the gaps.

Would we still feel “broken” if the pieces all fit together?

August 4, 2011 / Julia

Please, please believe me

My attempt to start a letter-writing campaign on behalf of this teenage boy abused for being autistic appears to have failed, so I am trying a different tack. Below you will find the text of the letter I wrote for him. If you can, please help me disseminate this far and wide in the hopes that it will reach him, and anyone else in a similar position. Add your own kind words, experiences, and links to or quotes from disability pride resources. If this picks up enough steam, I would like to start a blog exclusively for this project.

Some resources to start:

You Get Proud by Practicing by Laura Hershey

Disability Shame Speaks by Laura Minges (make sure to follow the “next part!” links at the bottom: it’s a total of four pages and very, very good.)

Speech (without a title) by…me

The Letter:

Hi.

My name is Julia Bascom. You don’t know me, and I don’t know your name. I read an article about an assault you endured at your school though, and I want you to know that you are not alone.

I’m Autistic too. There are millions of us just like you who have been bullied and abused too. It’s wrong, it’s horrible, it’s unfair and unacceptable and none of us, especially you, deserved it. And you are not alone.

I was sexually abused by my classmates every day in Earth Science in ninth grade while my teacher stood two feet away. No one believed me. No one stopped it. Everyone laughed. But here’s what some very wise people said to me, later: just because no one believes you doesn’t mean it didn’t happen. Just because they laughed doesn’t mean it was funny. Just because they said you deserved it doesn’t mean you did.

Please, please believe me.

I’m sure you’ve been told it wasn’t a big deal. It was. It’s a huge deal. Don’t doubt that for a second. It was wrong. They are in the wrong. None of this, absolutely none of this, is your fault. They are the ones who need to work on their social skills. They are the ones who lack some basic empathy.

I can’t fix what happened to you, or to me, or to any of the people I know. It’s painful and humiliating and makes a person feel wrong and bad and powerless. Please trust me when I say that you are none of those things. You are not bad or broken. You are autistic, and you are also fine.

You deserve to be treated like a human being. You deserve kindness and respect and dignity. Someday, you will have those things.

I am fighting for that. My friends at the Autistic Self Advocacy Network (http://www.autisticadvocacy.org/) are fighting for that. Even the President is on our side—he made a speech in March for a conference I attended that stressed that bullying and abuse are civil rights violations. We’re gonna win this. But right now, you just need to remember that you are fine. There is nothing wrong with you. All the bullies and abusers in the world can’t change that.

You can write back to me if you want to, or email me at juststimming@gmail.com. You absolutely don’t have to. But there is a whole community of us out there who want to help, and who are sickened and outraged every time this happens, and who will always support you and have your back.

You are not alone.