posted 20th Jul '12
WHAT DOES BEING DIFFERENT MEAN?
by Jim Sinclair
From Our Voice, the newsletter of Autism Network International, 1992, Issue 1
Autistic people are different from other people. We hear that all the time, but what does it really mean? To non-autistic people, including most of our parents and teachers, being different is one of the most disturbing things about autism. A treatment program is considered successful to the extent that it causes tshe autistic person to act more like a non-autistic person. An autistic person is considered successful to the extent that he or she has learned to "act normal." But what do being different and being normal mean to us?
Karen and Arnold Reznek ask when I developed an awareness of being different. My answer is that I still haven't, at least not in the sense they're talking about. I just didn't start out with an expectation that I should be the same as other people. I grew up surrounded by a lot of things that weren't like me--parents and other adults, dogs, hamsters, trees, flowers, furniture--and it never occurred to me to be surprised that they weren't like me. Other children were just one more category of things in the world. It didn't occur to me that I was supposed to be one of them.
What has come as something of a revelation to me (and it didn't happen until after I had graduated from college) is that other people DO expect me to be one of them. This was quite surprising to me, and it seemed more than a little bit ridiculous when I realized it, and I still don't really understand it.
There were some things I was aware of from a much earlier age. I noticed that other kids picked on me. That was just part of life: I didn't like it, and at times I wondered what there was about them that made them so nasty, but I certainly didn't think that I should be like those nasty people.
I remember my mother urging me to "be nice to them and then they'll be friends with you." I didn't know what she was talking about. Be nice? I wasn't doing anything to hurt them. I wasn't interfering with them in any way. I was just minding my own business. What more did she want from me? And I certainly didn't want them to be friends with me. I didn't like people who treated me that way; why on earth would I want them as friends? (I should add that there were a few kids who were nice to me, and I did value their friendship. It didn't occur to me to group them together with the kids who picked on me either.)
I've heard other autistic people say that they wish they weren't so different from other people for this reason: that they don't like being mistreated, and they know the reason for the mistreatment is that they're different and don't fit in. I never reached that conclusion myself (why should I be unhappy with the way I am just because the way some other people are is obnoxious?), but I can understand the reasoning. They want to be more like other people because of some perceived benefits that go with the status of fitting in, not because fitting in is especially desirable in itself.
The idea of wanting to fit in for its own sake, of being different as a misfortune in and of itself, is not an idea I've heard expressed by autistic people. If an autistic person is unhappy about being different, it's because non-autistic people have taught the autistic person that bad things will happen to you if you're different.
I've talked about peer mistreatment, but from what I've observed, some of the most devastating consequences of being different are inflicted by parents and others who believe they're acting out of love. What message is conveyed by parents who constantly express sadness over their child's differentness from other children? What is communicated by parents who constantly exhort their child to "act normal," and whose greatest praise and approval are gained by "not acting autistic"? The unmistakable message is, "My parents don't want me the way I am. They're sad that they have me instead of a normal child. The only way they'll like me is if I act like somebody else."
Some autistic children internalize this message and accept "being normal" as their major goal in life. And it's been my observation that the more deeply invested an autistic person is in being normal, the more likely it is that he or she suffers from anxiety, depression, and low self-esteem. It's a natural consequence of making one's top priority to become something other than oneself.
So what do I suggest? First of all, I think everyone needs to realize that being autistic is nothing to be sad or ashamed or embarrassed about. Stop grieving about it! Secondly, I think non-autistic people need to stop agonizing over issues of normalcy and differentness, and autistic people need to stop getting caught up in non-autistic people's hangups over these issues. Stop trying to deny or minimize the differences, and stop pretending the autism can be separated from the person. Autistic people are very different from non-autistic people, and those differences run all the way down to the core of personality and awareness.
And there's nothing wrong with that! It's our nature as autistic people to be different in those ways--it's the way we're supposed to be. Feeling 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 allowing it to damage our self-concepts. Besides, even though non-autistic people may hate or fear or pity us for being different, I think they really need us to be just the way we are. We're the ones who notice that the emperor isn't wearing any clothes.
Does this mean I think autistic people shouldn't have any treatment or education? Not at all. Every child needs to be taught to function in the world. Every adult encounters problems and challenges from time to time, and needs to learn new skills or seek help from others. My point is that autistic people should be helped to function in the world as autistic people, not to spend their lives trying to become non-autistic.
If an autistic person is engaging in behavior that is dangerous or destructive, or that interferes with the rights of others, then certainly this is a problem that needs to be resolved. If an autistic person lacks a skill that would enhance that person's ability to pursue his or her goals, then every effort should be made to teach the skill. The problem I see is when autistic people are subjected to intensive, stressful, and often very expensive treatments simply for the purpose of making them appear more normal: eliminating harmless behaviors just because non-autistic people think they're weird, or teaching skills and activities that are of no interest to the autistic person just because non-autistic people enjoy those activities.
Another important issue in helping autistic people to function as autistic people is that even if an autistic person has the same goal as a non-autistic person, he or she might need to follow a different procedure for getting there. This is what I call working with autism, instead of against it. Autistic people have ways of learning, ways of remembering, ways of orienting, and ways of working that are different from those of non-autistic people. We should be looking for ways to use our natural processes productively, not trying to do everything the same way non-autistic people do it.
Of course this brings us back to the matter of being different, and not being ashamed of it. Going back to my own personal experience, of course it creates complications when I make use of my own autistic processes to pursue interests and goals that are meaningful to me, and make no effort to do things the way other people do them. It violates people's expectations. But a lifetime's experience has demonstrated that I have no choice in that matter--I'm going to violate people's expectations no matter what I do, because I don't know how to act normal even if I wanted to.
The choice I have is in how I violate those expectations. If I accept other people's norms as my own goals even though I don't understand them, then I assure that when I can't conform to other people's expectations, I fall short of my own standards as well. But if I define myself only in terms that are meaningful to me, and I refuse to accept standards and roles that aren't part of my reality, then I can maintain a strong sense of identity and self-assurance. When I don't meet prevailing expectations of normal behavior, I know and can explain why I'm not meeting them: Those norms apply to non-autistic people. Since I'm not a non-autistic person, there's no reason why I should try to act like one, and there's no sense of failure attached to not acting like one.
That might appear to be a separatist posture. Whether it is or not depends on whether the non-autistic people I encounter are prepared to allow me to live and function among them as an autistic person. It comes down to this:
There are many ways in which it is difficult or impossible for me to meet standard definitions of normalcy. Some of these relate to impairments or deficits in functions that come easily to most people. Some relate to skills or strengths in functions that are difficult for most people. Some relate to ways of perceiving and responding that are neither better nor worse, but are qualitatively different from those of most people. 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 greatest deficits involve my inability to learn and internalize social norms that appear meaningless to me. There has been ample demonstration that I can function more effectively by starting from a position of strength rather than one of weakness: that is, by presenting myself as myself rather than trying to become something else. Given this foundation, is it possible for me to find--or create--a place in society that allows me to make maximum use of my strengths and to minimize the limitations of the things I can't do?
And the answer to that will be a lifelong adventure, for all of us.
Reprint permission: All articles published in "Our Voice" may be freely copied and shared for personal use, and reprinted in other publications, provided the original author and publication credits are included in all copies or reprints. If you reprint any of my articles, I would appreciate being sent a copy of the publication containing my article. My mailing address is:
P.O. Box 35448
Syracuse, NY 13235
Best I've ever read!!