Does Asperger’s Define Me?

It is very common for people who have autism spectrum disorders to state that “Autism does not define them.” For a long time I have struggled to understand what is meant by this, and have recently decided that what these people mean to say is that autism does not run their lives and that they are made of many other attributes besides those prescribed by their condition. Usually this phrase is used to indicate that people with autism spectrum disorders are able to do many good things despite their disabilities. What many do not consider is that while many of our struggles and downfalls come from the disabilities which do not define us, many of our faults are faults because in addition to being autistic, we actually are human beings.
It can be difficult to distinguish the faults posed by our human condition from those from our autistic condition, though it is easy to prove the fact that we have human faults simply by the fact that if we did not, then we would be perfect humans if not for our conditions. By this logic, everybody would have to have a mental disorder, and if everybody had a disability, then there would be no such thing as a disability. For those of us who are disabled, it is important to be able to determine the faults which do define us as opposed to those which are of the condition which does not. By being able to tell which social mistakes come from AS and which come from our human condition we are able to treat our autistic condition more effectively.
The main difference between our human and autistic faults is the intention of the action in question. If somebody tries to get my attention and I do not turn around it could be either because my autistic condition caused me to be distracted and I did not hear them, or it could be because my human condition caused me to resent them for some reason and therefore consciously ignore them. In the first scenario, it would be wrong to place blame on me for not responding, but in the second scenario I would have deserved blame because I made the decision to not turn around.
That being said, I have found that those with autistic conditions work more carefully to shape their human conditions because the impact of our human faults on our autistic faults tend to bear much larger consequences for us than for those who do not have autistic faults. If I were to decide one night that instead of adhering to my autistic routine of eating dinner, studying, showering, and sleeping, I would instead go out and stay up late instead of doing work, I would be demonstrating a human fault. However, this human decision would result in the breaking of my autistic routine, and my autistic condition would cause me to become overwhelmed by the break in the schedule and it could take a week or two to readjust to my routine, causing anxiety and a build-up of work. Somebody who does not live with an autistic condition may go out every night without studying but not become overwhelmed, and will only realize the consequences when they find they have failed their courses. Because those who do have autistic conditions take this into consideration, we are less likely to make poor human choices because we are more aware of their consequences.
It is necessary for us, then, to find the perfect balance between our human condition and our autistic condition. Autism may not define me, but it definitely does help me to live better as a human being.


2 responses to “Does Asperger’s Define Me?

  1. Wow, this is a really awesome post. It’s easy to think that everything someone with disabilities does is because of their disabilities, but I’ve never heard it put into words this way.

    It reminds me of when my sister (who has many disabilities) and I went to the movies a month ago. She carries a bag full of papers everywhere, mostly transcripts of movie scripts that she studies endlessly. Upon entering the theater, they insisted on inspecting her bag. She doesn’t like people going through her things, and refused. It looked likely to escalate into a shouting match, possibly full meltdown. Normally, I would try to intercept, mediate, and cool down the situation with some explanations to the employee and a “just let him look through your bag” to my sister. However, I too was fed up with the policy of bag-checks at a movie theater, and decided to sit this one out.

    She shouts “It’s just papers!” repeatedly, and we just keep walking. I give the employee a “you want a piece of this?” look. The employee pursues for a while, then gives up. I considered it a victory for both of our dignity and a slap in the face of the stupid theater policy.

    Now that I look back at it, though, she did exactly what I wanted to do (and what every customer to go through that theater wanted to) but am societally conditioned not to. With the perspective of your article, I realize that it’s pretty likely her complaint was a human one, not one caused by her disability, and that if anything her disability freed her of the conditioning the rest of “normal” society has, to submit to unreasonable searches.

    If I had a bag, I could have just as easily refused the inspection myself and raised a stink, and it would not have been attributed to any disability.

    More and more, I notice people with disabilities doing things that, on the surface, are easy to dismiss as “they’re doing that because of their disabilities,” but in actuality, in that situation I would probably do the same, for better or worse.

    Just came across your blog today, am looking forward to watching the rest of the videos.

  2. I find this post to share an interesting perspective which I appreciate. I personally don’t make a habit of trying to separate my autistic traits from my other personality traits and see the autism as pervasive. I also do not think of having autism as something that can be opposed or contrasted with humanness, since I’ve never for instance heard of an autistic cat. Nonetheless, I have used the phrase you are considering in this post. While I think you are correct that many who say it mean just what you have deduced, I, on the other hand, did not mean this. When I’ve stated that my ASD does not solely define me, I was referring to identity politics. I had noticed (I am newly diagnosed this past year at 32 years old) that many autism spectrum individuals on various websites across the net attribute all of their experiences, relationship problems, success and failures throughout all spheres of life to their disability/disorder. I, however, think this is misleading, since there are of course many other factors which contribute to one’s lot in life, such as race, class, nationality, etc. I would not say that I’ve had the successes that I’ve had with my grades at school are just the result of intelligence that are a part of my disability. I would say that a part of that is the school I went to and the socioeconomic status of my family (middle class, good school, great opportunities for gifted programs, etc.) If I were to contrast my experiences in school growing up with my husband’s (also on the spectrum) who grew up in a far more economically and socially disadvantaged area with poor schooling, hardly any special education for challenged or gifted students, it would be immediately obvious to me that it was not my autistic traits alone that allowed me to be in a gifted program while he barely completed high school and never went to college (despite being an intellectual genius, which he is). Likewise if I were autistic but grew up in a developing nation where there was a scarcity of food, where women are not allowed to eat before the men even when pregnant and there is not enough to go around, with no or poor health care, etc., then I seriously doubt that my disability would be the most defining characteristic in my life, and certainly at the very least would not affect me in the same ways that it has here in the US as a middle class white American. I guess I’m going on a bit, I’m sure you get the idea- the other factors which influence our place in the world seem to me to be of more importance than whether or not I can get along with others and get or keep a job. At least for me, where I live, in a liberal state and city with lots of social safety nets, and even with my chronic unemployment, no friends, etc., I am not starving, having bombs dropped on me or my children, or personally affected by an AIDS epidemic (in the way for instance so many women in Africa are, not to imply there isn’t an AIDS epidemic in the US as well, just not as large). Beyond that I also have a sexuality and political opinions which define me and while perhaps in some ways affected by my autism, were certainly not created by it (or else all autistics would share those things with me and all those non-autistics would not share them with me). To me, these are the ways in which autism does not define me.

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