Monday, April 4, 2011

Autism Awareness Month (Self-Advocacy Remix)

So, April is Autism Awareness Month. This is, unsurprisingly, a month dedicated to making neurotypical people (people who don't have autism or other brain disabilities) aware of autism. Like any other time when a lot of people are talking about autism, the opinions of actual autistic people often get ignored. So here are some things that I, as an autistic person, would like non-autistic people to be aware of during Autism Awareness Month.

1. Discussions about autism should prominently feature the thoughts and opinions of autistic people.
Just like discussions about women should center around women, and not, you know, their husbands, brothers, fathers, boyfriends, and any other men in their lives. If you can't understand why someone who has a particular disability (or any other kind of identity, for that matter) would know more about it than someone who doesn't, then I don't know what to tell you.

If you want to learn more about autism, watch "In My Language." Read "Don't Mourn For Us." Don’t trust people who don’t have the experience of being autistic to tell you all about us.

2. Yes, autistic people have feelings.
Again, I think this is pretty obvious, but a lot of people tend to think we don't feel emotion. So for the record: we have feelings. If we don't express those feelings the same way as other people, that does not mean they are not there. If we don't or can't communicate those feelings to you, that also does not mean they are not there.

3. Autistic people also have empathy.
A lot of people believe that autistic people do not experience empathy for others. In my opinion, this is due to a) prejudice and/or b) confusion about the psychological-technical definition vs. the commonly-used definition of empathy. We don't lack the ability to share other people's pain or happiness, which is how the word "empathy" is commonly used. What many of us do lack is the ability to tell what someone else is thinking or feeling without them telling us. I don't really think this is a big deal because it wouldn't even be a problem if people told other people what they were thinking or feeling instead of trying to make other people figure it out telepathically. This would make communication easier for everyone, including neurotypical folks.

4. Autism isn't [just] a social disability.
It has lots of other components, including cognitive differences, gross and fine motor problems, executive dysfunction, special interests and obsessions, and sensory issues. Focusing on the social problems that autistic people encounter leads to a very inaccurate understanding of autism. It also places too much blame on autistic people for the social ostracism we encounter, a lot of which comes from ableism. For more on the “social skills” issue and why it is messed up, read this.

5. The medical model is not a great way of thinking about autism.
Taking a medical-model approach means viewing autism as a disease in need of a “cure.” According to this view, a person has autism the same way they might have the flu – it’s an illness afflicting them, not an integral part of their personality. This is why people say things like “I want to bring my child out of autism” – because they genuinely believe that inside every autistic person is a normal person waiting to get out.

The reality is that autism doesn’t work that way. It’s built into our brains, and though each person’s brain grows and changes as they get older, we will always be autistic. This is who we are, and a lot of us are just fine with that. Therefore…

6. Having a passionate interest in making sure that no more autistic people exist is actually kind of offensive.
Seriously, think about this one. Think about an identity that you have, something important, something that makes you who you are. Now imagine how you would feel if there were lots of widely-respected groups devoted to making sure that no one who fit that description, no one like you, would ever be born again. This is one of the reasons that so many of us oppose research into the causes of autism: even though finding out more about the human brain is usually really awesome, in this case we fear any research into cause would just lead to a prenatal test for autism, and thence to ability-selective abortions.

7. Passing is not necessarily the best thing for autistic people to do.
A lot of early-intervention therapies for autism focus on getting rid of “weird” autistic behaviors and training children to act more normal. If these children then master the art of conformity and go on to become “indistinguishable” from their neurotypical peers, this is regarded as a great success. But few professionals consider the effect on autistic people of having to hide who we are and present ourselves in a way that feels inauthentic. In fact, though passing may open doors for us that would normally be closed, it often comes at a great psychological cost.

For the most part, people think nothing of asking autistic people to change everything about themselves in order to meet the demands of neurotypical society. But they rarely consider that it is also possible to change those societal demands in order to include autistic people.

I don’t quite understand the meaning of “awareness” in Autism Awareness Month. It’s incredibly rare to meet someone who is unaware of the existence of autism. However, I encounter myths and misinformation about autism wherever I go. I think this is as far as “awareness” can progress when the conversation surrounding a minority group is controlled by the majority. Of course neurotypical people can still contribute valuable insights related to autism – but only we can speak about it from experience. If your goal this April is to become truly aware of the realities of autism, you’re going to have to listen to what we have to say.


  1. Thank you very much for posting this! I often feel like I'm teaching my 10 year old Asperger's boy how to fit in an unintelligent, mediocre, nonsensical world. He was dianosed finally when he was 8. Before that, everyone just blamed his behaviors on me, his mother. I knew that he was just different, so I did whatever I could do to help him feel comfortable in his own skin.

    I feel sad sometimes that he is making concessions to fit societal norms, but if he had a different 'disability', society would be making concessions for him. Still, the older he gets, the more I think that Autism may just be a piece of evolution creating superior brains...

  2. I'm glad that you're supporting your son to feel comfortable with himself, and I definitely agree that society's demands can be very arbitrary.

    However, I really don't like to think of autistic brains as "superior" for the same reason I don't think of NT brains that way. I think ultimately, dividing brains into "good" and "bad" always leads back to prejudice against people with brain disabilities.

  3. I don't understand why cure keeps being described as removing identity and weirdness, and pushing conformity. Those excesses you describe shouldn't cause the true goal of cure to be disregarded. I only think cure should be about healing the disability often involved. That's what I've thought of through my own experience with such impairments. I bet that without the constraints of disability, it could be easier for one to choose not to conform.

  4. Hi lurker --

    I wasn't trying to say that cure is the same thing as conformity. I think cure goes far beyond that -- a hypothetical "cure" procedure would entail transforming someone into a completely different person by messing with their brain. This is why I oppose the idea of cure. Additionally, I think cure is probably impossible, because I can't imagine any way to safely alter the structure of someone's brain that dramatically.

  5. I don't think cure's alterations of brain structure to increase abilities, would change someone into a different person, because of the specificity involved. Not all aspects of the brain would really have to be changed. Lots of individuals with the same abilities are different from each other. Even without such procedures, individuals' brains do naturally change slightly through experiences. I think safe and effective ways can be devised in the future, considering how rapidly technology can be enhanced.

  6. Thank you for posting this, Zoe. I like how you clearly point things out. Would you please one day write about the pressure of making eye contact and your experiences with that?

  7. Hi Tennille! Eye contact is one of like a gazillion things that I have to write about soon.

  8. Hi Zoe,
    I don't know if you remember me, but I was in your cousin, Melissa's wedding. I had just had my first son, who at age 2.5 was dx'd with PDD-NOS. Melissa just introduced me to your blog and I'm really excited to learn about how well you are doing. Lately I have been worried for my son's future because I only knew of a few famous ASd people that had lived full lives. Mostly we hear about the group homes and lifelong supports necessary for our children. It is so important to hear from ASD people that are living "normal" lives.

    I wish you the best and I look forward to reading more of your posts.

  9. Zoe, thanks for writing back. I think we actually may have a lot more in common than different in our beliefs. I am only trying to heal his medical issues that make his autism worse like his horrible GI problems, his yeast and his sensory sensitivities. Those things that make it painful for him to live. I am so happy to learn about how you feel and look at the world and autism's place in it. I agree it is really, really important for everyone to know how autistics feel about their ASD. I know when Matthew was younger he was very sick and now he is doing better. So my new goal is to just support him in any and every way I can. Thanks again for putting yourself out there for us to learn from. I figure that has to be pretty hard for anyone to do. But it is really important for everyone, but especially for us parents and other ASD kids to see just what life can be like. Plus, you're pretty funny too.


  10. Zoe, you are right about the superior thing. Perhaps that was not the right word? I play with the idea that autism is perhaps evolution of the brain... nature testing out different wiring for future use. Not inherently good or bad, just a glimpse into future brain schematics.