16 June, 2011

What should I know about autism that I'm not learning from pop culture?

from my disability page here

I feel like American pop culture is obsessed with autism. It is obsessed with two kinds of autism: very severe autism, which it thinks is kids hitting their heads, and mild autism, which it thinks is people who act weird and are socially impaired. In America and some other places, a person with autism can make a ton of money writing a book about having autism, especially if they make it sound as exotic as possible.

I'm a pretty good writer, and I have autism, but I think I will try to make money in other ways. I find it hard to write about having autism, especially if I have to make it sound exotic. It doesn't feel exotic to me since it is my life.* Also, as everyone knows, being asked "What is it like being gay?" or "What is it like being a middle child?" is very confusing, because you don't know what a lifelong situation is "like" because things have never been any other way. I feel like it's kind of a betrayal of yourself to write a really sensational book about a disability you have always had.

Anyway, I'm just trying to say that I'm not going to spend a lot of time writing about "what autism is like for me" or "what autism is." There are lots of places you can read that (some of them good). But this one page is an exception because I really just want to talk about the pop culture portrayal of mild autism/Asperger's Syndrome (mild autism and AS are not really synonyms, but whatever, pop culture thinks they are). I want to explain why it's not correct.

Lots of people think "Asperger's" is a purely social disability.

According to pop culture, people with "Asperger's" do some strange/geeky things, and don't understand other people's feelings, and don't have any friends. And that's all that "Asperger's" is.

This is fucked up because it's not true. First of all, it leaves out some really difficult parts of living with autism, and leads people to think that mild autism isn't a real disability. Second of all, it means that the severity of an ASD person's disability is often judged by how socially successful they are. This means that if a person has friends and/or seems "normal," other people won't believe that they are disabled, even if the person has a lot of other problems.

What are those other problems?

Well, one of them is called "executive dysfunction." I recommend reading the Wikipedia page on dysexecutive syndrome, which is a disorder caused by a brain injury, but is very similar to what ASD people experience. Executive dysfunction affects many people with developmental disabilities and is a huge issue for every Autistic person I know, but it hasn't been studied very much and isn't officially considered to be part of autism. (I'm guessing this is because so many studies are done on kids, who have a lot of decisions made for them and therefore aren't going to show executive dysfunction as clearly.)

Also some people with autism have trouble transitioning from one activity to the next, have anxiety problems, have intellectual disabilities, have depression, have sensory issues (get upset by certain sensory experiences, like loud noises or stiff clothes), get upset unless everything is a certain way, or have trouble talking. (Trouble talking can mean a lot of things, like having trouble pronouncing words so people can understand them, having trouble putting together clear sentences, not being able to talk at all when you're upset, or talking in a style that other people react badly to.)

One reason I like to say I have autism instead of saying I have "Asperger's," even though there is a stereotype that autism means severe autism and there is a ridiculous stereotype of what severe autism is: my problems are mostly related to executive dysfunction, anxiety, transitions, and having trouble talking. At least the stereotype of severe autism includes people being upset, not liking change, and not being able to talk or take care of themselves. Even though it's overblown, it's more like what my actual problems are than the "Asperger's" stereotype.


Okay dude, here's the thing:

1. Lots of people with disabilities have social problems. Especially people who have developmental delays, because when they're in school, they may not have the skills or interests that other people their age have. Actually, for people with autism, it isn't always that we seem too young; some people with autism seem too old because they are self-educated and know about things that other kids don't know about, or "talk like an old person." But it can go either way. Or both ways in one person. Talking differently or having different interests can make it hard to fit in.

2. Lots of people who don't have disabilities like to ostracize people who are disabled. Some people with mild autism do things that "look disabled" like flapping their arms or clapping their hands when they're excited or running around all the time. This means that many non-disabled people aren't going to want to be friends with them.

3. Some people with autism may want to talk about the same things all the time, or always do activities that are related to those things. There are actually lots of subcultures that are accessible to a person like that, but the average non-Autistic person will want to do a variety of activities, and won't get along with such a person.

4. Some people with autism have very strong feelings and may scare people they want to be friends with, because they are really affectionate and want to spend a lot of time with them right away.

5. Some non-Autistic people may not understand why a person with autism isn't looking them in the eye, or doesn't want to hang out because it would mean breaking their routine. This means that they may think the person with autism doesn't want to be friends with them, when the person actually does.

6. Some people with autism may be shy and anxious as a result of being bullied when they were younger. They may also be kind of self-conscious and distant if they're trying really hard to hide the fact that they are disabled. This can make it hard to make friends.

I'm not saying that I'm 100% sure autism doesn't cause people to have trouble sensing other people's emotions, but there a lot of aspects of autism that could keep someone from being socially successful. I think it's very reductive to say that "Asperger's means a person is socially impaired/doesn't understand other people's feelings/can't make friends."

When I was 16, I was kicked out of a study of ASD kids because the study was about how to make someone better at reading facial expressions, and I was judged to already be good at reading facial expressions. But despite that, I had a lot of social problems at that age, and still have some now.

What is a better way to think about autism?

(In making up this fake question for myself to answer, I'm thinking about a better way than really sensational books and very special episodes of TV shows saying that people with mild autism are super genius geek robots who don't care about other people's feelings, or don't know that other people's feelings exist.)

I wish that autism was more strongly associated with intellectual disability (formerly known as mental retardation). This isn't because some people with autism have ID, although that's true. It's just because I think there are a lot of similarities: a person with autism, ID, or both is born into the world with a certain disability that they will always have. They will develop some skills later than other people. Depending on the severity of their disability, there may be some things they will always need help with. They may have trouble fitting in with other people. They may be abused by other people for being different. They may end up in situations they don't understand (and of course, people may assume they don't understand things they really do understand). They may have trouble taking care of themselves. They may have trouble talking.

This isn't interesting. It's not something to write a book about--which isn't to say that people with autism, or ID, don't often lead interesting lives. But their impairments alone are not interesting. They're just a part of life.

This is not to deny that people with intellectual disabilities are treated terribly in our society, in a different way from people with autism. I'm jealous that they're not seen as curiosities because of their disability, but the awful side is that they are often seen as not interesting at all in a pervasive way. Non-disabled people just want them to be completely kept out of sight. Non-disabled people insult each other using the word "retard" as if it doesn't refer to any real group of marginalized people. Non-disabled people are surprised to learn that a person with an intellectual disability can be funny or cool, and they do their best to avoid finding that out.

However, once people are actually forced to spend time with a person who has ID, such as by being their parent, I think they are more likely to accept the person for who they are and work around the impairments the person has. This isn't really the case with autism. And I think that the movement for people with ID to be treated equally is in a lot of ways ahead of the movement for people with autism, because of this acceptance. At least there are many organizations that encourage people with ID to speak up for themselves--whereas most people with autism are encouraged only to speak about themselves.

*I admit I'm being kind of a bitch what with constantly declaring that I'm not interested in writing about what autism is like. I mean, I know that some people have been recently diagnosed and they are very interested in reading about what autism is and what it's like, which is legit and I don't want to be critical of anyone who's in that situation and happens to wander over here looking for help. I just tend to be really snarky about this stuff because I really don't like the cultural trend of people with autism being expected to educate non-disabled people about autism. But if you actually have autism and want to talk about it, you should get in contact with me on tumblr or gmail or something.


  1. "'I am so lucky I get to do so many things,' she concluded. 'I just want you to know, even though I have Down syndrome, it is O.K.'"

    This is such a great quote.

    Oh the article too, these things are what I wish people would be aware of. I ended up being forced to see a counselor and few times when I was still trying to get diagnosed and he was like "well if you have asperger's syndrome you just need to work on your social skills." (this was shortly after someone had called the police to bring me to a hospital for being temporarily nonverbal and not moving enough) I did not see him again.

  2. Hi Amanda:
    I just read this, I'm not sure how we disagree, based on your comment on my blog. Of course people with ASDs commonly have EF issues and mood issues, but these are not core features and not part of the diagnostic features, but often more disabling than some core features. Many of the fictional characters I described do have these features, eg. David Brent in The UK Office (EF issues help him be bad at his job, mood issues develop later when he's fired). This sort of issue though is not very funny, and the aim of fiction is firstly to entertain in some way, so not standard in comedy characters with ASDs.