Are you unhappy about being autistic?
What does it mean to be different?
Jim Sinclair, autistic activist.
Autistic people are different from other people. We hear this all the time, but what does it really mean?
For non-autistic people, including most of our parents and teachers, being different is one of the most troubling aspects of autism. Therapy is considered successful to the extent that it causes the autistic person to act more like a non-autistic person. An autistic person is considered successful to the extent that they have learned to "behave normally". But what does being different and being normal mean for us?
Karen and Arnold Reznek ask when I became aware of being different. My answer is that I still don't have that, at least not in the sense in which they mean it. I just didn't go with the expectation that I should be the same as other people. I grew up surrounded by things that weren't like me - parents and other adults, dogs, hamsters, trees, flowers, furniture - and it never crossed my mind to be surprised that they weren't like me . Other children were just another category of things in the world. It didn't occur to me that I should be one of them.
What has been something of a revelation to me (and it only happened after I graduated from college) is that other people expect me to be one of them. That was pretty surprising to me and it seemed more than a little ridiculous to me when I realized it and I still don't really get it to this day.
There were some things that I was aware of from a much earlier age. I noticed other kids teasing me. It was just part of life: I didn't like it, and sometimes I would wonder what was wrong with them, that they were so hateful, but I definitely didn't think I should be like these hateful people.
I remember my mom urging me, "Be nice to them and they will become your friends." I didn't know what she was talking about. To be nice? I didn't do anything to hurt her. I didn't bother her in any way. I've taken care of my own business. What more did she want from me? And I definitely didn't want them to be my friends. I didn't like people who treated me that way; why on earth would I want them as friends? (I should perhaps add that there were some kids who were nice to me and I appreciated their friendship. It also never occurred to me to put them in a group with the kids who teased me.)
I've heard other autistic people say that they wish they weren't so different from other people because of the following: they don't want to be treated badly, and they know that the reason they are badly treated is because they are different and don't fit in. I've never come to this conclusion myself (why should I be unhappy with who I am just because the way some other people behave is obnoxious?) But I can understand the reasoning. They want to be more like other people because they see some of the benefits that go with the status of a fit, not because the fit in itself is particularly desirable.
The idea of wanting to fit in for its own sake, of being different as unhappiness in and of itself, is not an idea I've heard from autistic people. If an autistic person is unhappy about being different, it is because non-autistic people taught the autistic person that bad things happen when you are different.
I have spoken about peer abuse, but from what I have observed, some of the most devastating consequences of being different are inflicted by parents and others who believe they are acting out of love. What message do parents convey when they constantly express sadness that their child is different from other children? What do parents communicate who constantly urge their child to "behave normally" and whose greatest praise and recognition is obtained by "not behaving autistically"? The unmistakable message is, "My parents don't like me for who I am. They are sad to have me instead of a normal child. The only way they will like me is if I act like someone else. "
Some autistic children internalize this message and accept "being normal" as their greatest goal in life. And it is my observation that the more an autistic person tries to be normal, the more likely they are to experience anxiety, depression, and low self-esteem. It is a natural consequence of making it your highest priority to become someone other than yourself.
So what do I propose? First of all, I think everyone needs to realize that being autistic is not something to be ashamed or embarrassed about. Stop being sad about it! Second, I think that non-autistic people should stop worrying about things like normality and diversity, and autistic people need to stop getting caught up in non-autistic people's mental blocks on these issues. Stop trying to minimize the differences and stop pretending that autism can become disconnected from the person. Autistic people are very different from non-autistic people, and the differences go deep to the core of our personality and consciousness.
And there is nothing wrong with that! It's in our nature as autistic people to be different that way - it's the way we're supposed to be. Being sad about the mere fact of being different is a handicap that non-autistic people have. It's not our problem, and we need to stop letting it damage our self-concept. Also, I think while non-autistic people may hate or fear or pity us for being different, they really need us just as we are. It is we who discover that the emperor has no clothes.
Does that mean I think autistic people shouldn't get therapy or education? Not at all. Every child must be taught how to function in the world. Every adult faces problems and challenges from time to time, needs to learn new skills, or seek help from others. My point is that autistic people should be helped to function as autistic people in the world and not spend their lives becoming non-autistic.
If an autistic person engages in behavior that is dangerous, destructive, or that interferes with the rights of others, then that is surely a problem that needs to be resolved. If an autistic person lacks a skill that would enhance that person's ability to pursue their goals, then every effort should be made to teach the person the skill. The problem I see is where autistic people are subjected to intense, stressful, and often very expensive treatments, with the sole purpose of making them appear more normal: suppressing harmless behaviors just because non-autistic people find them strange, or to teach skills and activities that are of no interest to the autistic person just because the non-autistic person likes them.
Another important issue in helping autistic people function as autistic people is that even if an autistic person has the same goal as a non-autistic person, he or she may have to follow a different process to get there . That's what I call working with autism rather than against it. Autistic people have ways of learning, remembering, orientating, and working that are different from those of non-autistic people. We should look for ways in which we can use our natural practices productively, not try to do everything the same way that non-autistic people do.
Of course, that brings us back to the matter of being different and not ashamed of ourselves. Going back to my personal experiences, of course, complications created when I used my own autistic procedures to pursue interests and goals that were meaningful to me and made no effort to do things the way other people do them . It violates people's expectations. But lifelong experience has shown that I have no choice in this matter - I will violate people's expectations no matter what I do because I don't know how to act normally even if I wanted to.
The choice I have is how I violate those expectations. If I accept other people's norms as my goals, even though I do not understand them, then I can assure you that if I cannot meet other people's expectations, then I am also failing my own standards. But if I only define myself in terms that are meaningful to me and refuse to accept standards and roles that are not part of my reality, then I can maintain a strong sense of identity and self-assurance. If I cannot meet the prevailing expectations of normal behavior, I know and can explain why not: These norms apply to non-autistic people. Since I am not a non-autistic person, there is no reason why I should try to act like one, and there is no sense of failure associated with not acting like one.
That may seem like a separatist point of view. Whether or not it is one depends on whether the non-autistic people I meet are willing to let me live and function among them as an autistic person. It boils down to this: It is difficult or impossible for me in many ways to meet the usual definitions of normality. Some of these relate to impairments or deficits in activities that most people find easy. Some relate to skills or strengths in activities that are difficult for most people. Some refer to types of perception or response that are neither better nor worse, but are qualitatively different from other people's.
Among my greatest strengths are my inner stability and my strong sense of who I am and what is important to me. Some of my biggest shortcomings include my inability to learn and internalize social norms that seem pointless to me. There was ample evidence that starting from a position of strength rather than weakness I can function more effectively: that is, by showing myself as myself rather than trying to become someone else. On this basis, is it possible for me to find - or create - a place in this society that allows me to use the maximum of my strengths and to minimize the limitations of what I cannot do?
And the answer to that will be a lifelong adventure for all of us.
More exciting publications on the subject of autism can be found under autism culture.
Jim Sinclair is the founder of the Autism Network International.
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