Our Problem with No Name
In the autistic community today, we are confronted by our own problem with no name. Caring parents, in accordance with experts' recommendations, are spending large amounts of time and money to provide a variety of services for their children. Despite all their efforts, however, their children's options in life are severely restricted by a society that does not respect or value neurological diversity. When autistic adults speak out about their desire for greater acceptance and opportunities, some parents feel unappreciated and resentful. Some autistics have the attitude that parents, no matter how supportive, can't possibly understand their feelings and needs.
What's being overlooked amidst all the misunderstanding and resentment is that there is a crucial difference between the autistic civil rights movement and other historical struggles for equal rights: Autism is a very recent cultural construct. It's not like gender, which always has been seen as a major and immutable human difference (except as to the small number of intersexed and transgender folks, who still are far from achieving full social acceptance). It's not like race either, because society's racial categories have existed for hundreds of years and because the vast majority of parents are categorized by society as belonging to the same race as their children.
Some autistic activists contend that neurodiversity is solely a matter of disability rights and that parents who have no diagnosis are not part of the autistic community. I strongly disagree with that point of view. The current autism spectrum categories, which became part of the DSM-IV in 1994, are extremely vague and arbitrary on how to identify an autistic person. When making a diagnosis, psychologists look at characteristic childhood behaviors such as hand-flapping and spinning. Because such behaviors are less likely to be observed in adults, it is often difficult for a psychologist to determine whether an adult is autistic without detailed information about his or her childhood development. Also, because useful services for autistic adults are few and far between, adults often have no reason to seek a diagnosis, even if they recognize the possibility that they may be autistic—and, of course, there are many who do not recognize it.
The inevitable consequence of all this diagnostic ambiguity is that, although there are parents who had behavioral patterns and cognitive traits quite similar to their autistic children when they were growing up, most of these parents have not been identified as autistic themselves. They may—or may not—have enough autistic traits to fall within the DSM-IV criteria, but they and their children have significant neurological similarities. In my view, these parents and their autistic children are part of the same genetically related minority group—the same "tribe," so to speak. To that extent, society's prejudice against autistics is a form of racism, and the parents who want to join the struggle against this prejudice should be welcomed as members of the autistic community, whether or not they are perceived as having a disability.
The term Broader Autistic Phenotype (BAP) sometimes is used to describe individuals who have autistic traits that are not deemed to be clinically significant. For lack of any other term, I'll use BAP in this post to refer to the "tribe" of families that have multiple autistic and close-to-autistic members.
Because BAP families do not have obvious racial characteristics such as skin color, it's all too easy for the parents, most of whom grew up thinking of themselves as "normal," to be persuaded that their child is suffering from a mysterious affliction and that they must defer to the experts' advice on what to do about it. They are taught to mistrust their own instinctive knowledge of how to raise their children, as well as the familial wisdom passed down through generations of BAP ancestors, and to rely instead on therapists.
A while ago, Joey's Mom wrote a comment on one of my posts describing how some parents can communicate with their autistic children in ways that often go unrecognized by modern society:
I've always wondered about the "autistic communication" thing. I know my son has a terribly difficult time with language, but even when he wasn't pointing or speaking, we still understood him and had understanding with him. We now know it wasn't the "normal" kind of communication people have, but it was definitely there, and is still there—little body movements, cues, clues.
Some parents of autistic children have an innate understanding of their children's feelings and needs. We should not be treating these parents as outsiders or adversaries; instead, we should encourage them to see themselves as part of our community and to take an active role in the process of defining our "tribe."
Allowing our community to be defined exclusively by psychologists forfeits the ability to define ourselves as other minority groups do. When some of us argue that the autistic community should consist only of diagnosed autistics, so that we can be in charge of our own destiny, what they're really saying is that we can be autistic only if a psychologist tells us we are. They're so worried about parents having any influence in our community that they'll happily turn over complete control to the psychologists, while deluding themselves that this will result in greater self-determination. I've noticed that even people who voluntarily choose to identify with the autistic community often use the term "self-diagnosed," meaning that after comparing their behavior to the DSM-IV criteria, they decided that it matched. There is no recognition anywhere that we have a right to define ourselves as part of a cohesive social minority group. If the diagnostic criteria were to be changed tomorrow, many of us would meekly go and visit a psychologist and ask if we were still autistic. That is the complete antithesis of self-determination.
Our cultural heritage is being taken from us, our children are being denied equal rights and taught self-loathing, our governments are openly targeting our community for genocide—and we don't even know who we are.
Labels: autistic community