Reports from a Resident Alien

I got a couple of comments today about my interview with NPR, and I realized that people might be visiting my blog thanks to the interview. I also realized that some of the stuff I talk about is kind of specialized, or at least more specialized than the general public might have been exposed to. I'm writing this, basically, because I hope to bridge the gap between "specialized blog" and "generalist NPR listener."

So: Hello. Let me introduce myself. My name is Lisa Daxer, I am a biomedical engineering major at Wright State University, and I am autistic.

There. That's the end of Internet anonymity. It had to come out sooner or later.

I think everybody probably knows what autism is. Autism is what happens when a person develops differently, and has problems with communicating and interacting with other people, and has unusual behavior, like repetitive movement or fascination with a narrow subject. But that's just the clinical definition; it's not the most important thing that needs to be said.

So... what does the average, everyday person need to know about autism? There are some misconceptions, some things that people ought to know and don't, and a few universal truths that tend to get ignored when disability is involved. Let me just list them.

1. Autism is diverse. Very, very diverse.
Ever heard the saying that, "If you've met one autistic person, you've met... one autistic person?" It's true. We like different things, act in different ways, have different talents, different interests, different skills. Gather a group of autistic people and look at them. You'll find people who are just as different from each other as neurotypicals are from each other--possibly even more so. Every autistic person is an individual, and you can't make any predictions based on their diagnosis other than, "This person probably has problems with communication and social interaction." And that's an awfully general statement.

2. Autism doesn't define a person... but it's still a fundamental part of who we are.
Someone was kind enough to inform me that #2 on this list was missing, so I'm adding it! I do occasionally tend to miss things... especially big picture stuff like "Lists of ten items should have ten items on them," because I'm lost in the details, like "Did I misspell anything?" If it weren't that I already have a pervasive developmental disorder diagnosis, I'd also be diagnosed with inattentive-type ADHD--autism isn't the only thing that's going on in my head. In fact, autism is only one of many things, and most of them aren't diagnosable as anything. I'm autistic, but I've also got the organization and task-switching issues you'd expect from someone with ADHD. I'm great at reading, poor at arithmetic, good at calculus. I'm altruistic, introverted, opinionated, and politically moderate. I'm a Christian, an engineering student, a scientist... So much goes into an identity! But autism colors all of it, like seeing through colored glass. If you were to assume that I'm the same person I would be without my autism, you'd be dead wrong!--because how can you be the same person living with a mind that sees things differently, learns differently, and has a different perspective on the whole world? Autism isn't just something added on. It's the framework around which an autistic person develops. I only have one brain, and "autism" happens to be a label that describes one particular aspect of that brain.

3. Having autism does not mean that your life is meaningless.
Disability, in general, doesn't mean your life is meaningless; autism is no different from any other disability in that respect. Communication and social-interaction impairments, along with the grab-bag of learning and sensory problems we tend to have, do not make life as an autistic person inferior to life as a neurotypical person. People sometimes assume that if you are disabled, your life must necessarily be worse; but I think they look at it too much from their own perspective. People who have lived their own lives as neurotypicals think of how they would feel if they lost those skills--when in reality they should be thinking of who they might be if they had never had them, and had developed different skills and a different way of looking at the world instead. Disability, in and of itself, is a neutral fact--not a tragedy. Prejudice, not autism, is the tragedy. It doesn't matter how impaired a person is; autism doesn't stop them from being a part of their family, a part of their community, a human being of infinite value.

4. Autistic people are just as capable of love as anyone else.
Loving other people isn't restricted to those who can speak fluently, read each others' faces, and remember not to talk about feral cats for half an hour while trying to make a new friend. We may not copy the emotions of other people, but we have just as much compassion as anyone else. What tends to be different is how we express it. Neurotypicals will often attempt to sympathize with the person; autistics (at least, the ones that are like me; as I've said, we're diverse) will often try to fix the problem that made them upset in the first place. I don't see that either approach is superior to the other... Oh, and: While I'm asexual, I'm not in the majority on the autistic spectrum. Autistic adults, with all kinds of autism, do want to fall in love, marry, and have families. Of the autistic people I know, several are married or dating.

5. Having autism doesn't stop a person from learning.
It really doesn't. We grow and we learn as long as we live, just like any other human being. Sometimes, I hear about people saying their autistic kids are "recovering", when what they're describing is the child's growing up, developing, learning in a good environment. It's almost as though they're devaluing the child's efforts and accomplishments when they put it down to some new drug or therapy. I've come a long way from the two-year-old who cried inconsolably, ran around in circles constantly, and couldn't stand the feeling of wool. I'm in college now, and almost independent. (I still hate the feeling of wool, though.) Given a good environment, given good teachers, learning is practically inevitable. That's what autism research should focus on: How to teach us best what we need to know in a world that isn't made for us.

6. Autism is almost completely genetic in origin.
Heritability of autism is up there near 90%, which means that any given case of autism can be put down mostly to having just the right combination of genes, whether that means "geek genes" passed down from your parents or new mutations in just the right places. Autism has nothing to do with which vaccines you got; it has nothing to do with what you eat. Ironically for the anti-vaccine argument, the only proven non-genetic cause of autism is congenital rubella syndrome--which is what happens when a (usually unvaccinated) pregnant woman gets rubella. Get your vaccinations, people. They save lives--as the millions of people who die of vaccine-preventable diseases every year would agree.

7. Autistic people are not sociopaths.
I know, you probably don't think that, but it had to be said. "Autism" often conjures up the image of someone who doesn't know or care that other people exist; when in reality, it's more of a communication problem. We do care; in fact, I know of several autistics who are so frightened of accidentally saying "the wrong thing" and hurting someone that they have become shy and nervous. Even non-verbal autistic kids have been shown to be just as attached to their parents as non-autistic ones; and autistic adults actually have a lower crime rate than neurotypicals (I don't believe this has much to do with our being any more virtuous; crime is, after all, often a social activity.)

8. There is no "autism epidemic".
That is: More people are being diagnosed with autism; but we have the same number of autistic people as we always did. Autism is found in adults at the same rate as kids. So where are the new cases coming from? They're new diagnosis on the milder end, due to the definition of Asperger's as a kind of autism without speech delay (it used to be that you couldn't be diagnosed if you could talk) and the inclusion of people with mental retardation (who are now often being discovered to be both autistic and MR); diagnosis rates of mental retardation have decreased as diagnosis of autism has gone up. However, the "autism epidemic" rhetoric has had one good effect: Now, we know that autism is widespread; we know that it doesn't have to be severe; and we know what it is so that kids can actually get the support they need while they're still little.

9. Autistic people can be happy without being cured.
And it's not just some kind of second-rate, salvage-what-you-can kind of happiness, either. Most neurotypicals (who aren't artists or children) will probably never notice the beauty in the patterns on a cracked sidewalk, or the gorgeous way the sun reflects off an oil slick after the rain. They'll probably never know what it's like to immerse yourself in a subject and learn everything about it, and the beauty of having all those facts lined up. They'll probably never know what it's like to flap their hands in happiness, or lose yourself in the feel of a cat's fur. There are lovely things about being autistic, too, just as there must be about being neurotypical. Oh, make no bones about it: It's difficult. The world's not set up to operate with autistic people in mind; and autistic people and their families face prejudice every day. But being a happy autistic person isn't "being brave" or "making the best of it". It's quite simply being happy. You don't have to be normal to be happy.

10. Autistic people want to be part of the world.
We do--but on our own terms. We want to be accepted. We want to go to school; we want to have jobs; we want to listen and be heard. We have hopes and dreams for our futures and for the future of the world. We want to make a positive impact. Many of us want families. We're different from the norm; but diversity makes the world stronger, not weaker. The more ways of thinking there are, the more possible solutions there are to any given problem. Having diversity in a society means that when we have a problem, we can among all the different minds find someone who knows the solution.

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