A woman fairly new to her self-diagnosis as a person on the autism spectrum was puzzled by list-members' insistence that the "autistic difference" was something intrinsically valuable. We are not people with a defective NT (neuro-typical) operating system, we are people with a different (autistic) but intact operating system. Our "way of being in the world" is different, several people said, but not therefore something to eliminate or discriminate against.

In response, she asked us to explain what we meant by an autistic "way of being in the world."


I mused:

What is our "way of being"? Some times it feels cultural. As if in some forgotten childhood I had grown up among people whose mental processes had been shaped by different cultural mores, expectations, and categories. Then my conscious memories were blocked and I was transported, to start all over again, into a society that looks the same on the surface but operates according to a different set of mores, expectations, and categories. Beneath my conscious knowledge that this (where I am here and now) is my society lies the deep feeling of alienation, not from individuals but from the nature of their interaction with one another and with the world. The buried me still operates according to that first planetís atmosphere and gravity. Thatís why I "walk funny" and shy away from sensations (sounds, lights, motions) that attract others. And it's also why my mental reactions in this world, whether of the "executive"/organizational variety or the emotional/psychological variety, are out of sync or simply not automatically present.

Growing up and never fitting in, having one's reactions (sensory and social/emotional) to the world be so different that they were considered crazy or a form of misbehavior.... Over and over and over again, what is natural for me is not believed by those around me. What is expected of me as "natural" is such a huge effort to manufacture and attempt to sustain/extend into the world.


There is always a tension between individual identity and group identity. Each person is unique and yet shares certain aspects or facets of experience with many others, like matching points on an overlay. When we choose (e.g., by calling ourselves autistic) to make and take an opportunity to meet with those whose constellation of points matches ours in distinctive ways, we are able to explore that constellation of points without having to justify them or persuade others that they exist, are worth talking about, and can be discussed as positive features rather than flaws we hope will prove temporary.

Identity depends in part on what we are in our bodies (including our brains) and in part on how what we are interacts with the world (including the social world) around us. Some characteristics of bodies have become encoded as natural categories in the U.S. culture with which I am familiar. It is taken as given that a person is either male or female, for instance, and any contradictions to the "naturalness" and completeness of those categories are ignored into non-existence or medicalized marginality. Similarly, it has been presumed that every individual belongs to a body-based category called "race," though that fiction is being challenged more effectively now.

Each person goes through a process of becoming aware of his/her identity from the inside and the outside. How does my being-as-I-experience-it match or not match the categories to which I am assigned by society? There is a wide spectrum within which people accept or contest how the available categories fit with their inside-out experience. One particularly interesting "public" example is James Baldwin, an African-American writer who went to live in Europe so he could be outside the constriction (or constrictive construction) he felt imposed on him by those both within and outside his "racial" category. After many years outside the U.S., he returned to become a spokesperson for his "race" because he wanted to participate in the enlargement of that category. He wanted to help make being "black" a difference rather than a disability.


As always, analogies are imperfect but useful with caution. It really did use to be accepted as fact in the U.S. predominating culture that man was the true human, woman the imperfect adjunct. Women were different and lacked male abilities (intellect, for example) but had one splinter skill (ability to bear children) and could be useful in undertaking the presumably lower-skilled (child rearing! elementary education!) and lower-paying work. All truly important social and cultural and political thought belonged to men because men were the norm, the standard, the "able," the complete version.

Now we're still in the midst of figuring out how the "difference" in women can be seen as truly different without making women lesser and without splitting the two halves of the species apart. We (men and women) have a lot more in common than not, after all.

And some of us (e.g., ANI members) are trying to bring into more general consciousness the existence of a positive difference between the neurologically typical and those who, in certain limited but significant respects, are living with a difference (in body/mind) that makes a difference (in experience/behavior).

Yes, we (autistics) have areas of disability. Everybody does. Perhaps ours are "worse" in some ways, but for the most part it is just that we cannot participate fully (or with full effect) in many aspects of NT society. To that extent, we are disabled, just as Deaf people are disabled by their inability to hear in a society where being able to hear is taken for granted. That doesn't mean we can't construct lives for ourselves that are as meaningful and worthy for us as NT lives are for them. Those of us who long to participate fully in NT society will feel badly about their differences and disabilities. All of us will be more or less disadvantaged by our differences when we interact with NT society (e.g., often, in terms of employment).


What is our "way of being"? It is the ways we naturally are when we stop trying to perform our existence to match the expectations and demands imposed upon us. If what is natural for us turns out to coincide significantly with the natures of a significant number of people who gather under the name "autism," then we probably are autistics -- or cousins. :-)

(by Jane Meyerding, 2003)


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