Conversations

Reflecting on Mark Stairwalt's post about autism as a family reunion, I have to confess that I can't wholly relate to his well-crafted analogy from my own experience because my family never has held large gatherings. But I had what might be called a mini-reunion when I had lunch with my mom at a nearby restaurant on Thursday, catching up on the latest family gossip about who cheated on whom, and so forth.

We also briefly talked about the proposed changes in the autism diagnostic criteria. I mentioned that I thought we would see more changes in the future as researchers identify biomarkers, such as in this study showing a significant delay in auditory processing.

"That's interesting," said my mom, lowering her voice almost to a whisper as she confided, "I never thought of myself as autistic, but I do seem to have a delay in hearing and understanding speech."

I replied that it was only to be expected that family members would have somewhat similar traits, and then the conversation moved on to a more general discussion of genetics.

After reading the New York Times article by Roy Richard Grinker on the diagnostic changes, I've been picturing similar conversations taking place in many families. I'm very pleased to see how far Grinker's views have evolved in just the three years since the release of his book Unstrange Minds, which I reviewed on this blog. I noted in my review that although Grinker, a cultural anthropologist, is very well aware of the socially constructed nature of autism, he nevertheless made a number of unfounded assumptions about his daughter based entirely on the prevailing stereotypes in Western culture. Now, just a few years later, those assumptions—such as that his daughter would never leave home or marry—are nowhere to be seen, replaced by this enlightened observation: "Narrow diagnostic categories do not help us understand the way a person will develop over time."

Of course, as with all improvements in society's perception of a minority group, some of its more privileged members have made clear that they would rather keep the stereotypes and prejudice because they can't deal with the prospect of losing what they perceive as their elite status within the group. In Bev's post Angry Aspies, Please Go Away, she calls out two of the usual suspects by name, including (no surprise there) Michael John Carley, who is up to his usual divisive tricks. Clay's blog entry on the topic mentions another culprit. This was only to be expected; and as Clay accurately states, the autistic community needs to have this conversation. Still, it's odious when people make clear that their idea of dealing with stigma is to deflect it onto somebody else instead of working to end it altogether; and I sincerely hope that those who are displaying such attitudes will either grow up or, as Bev says, just go away.


Edit: More posts written from an anti-elitist perspective can be found at LB/RB, Ballastexistenz, Reports from a Resident Alien, Cat in a Dog's World, Journeys with Autism, Uncle Sam's Cabin, The Standard Review, Life with Joey, I'm Somewhere Else, Susan Senator's Blog, Autism Street, Heatherbabes, Homo Autistic, Astrid's Journal, A Time Will Come... and AspieWeb.

Arthur Caplan's Rhetorical Plague

When I started reading this article on MSNBC.com, I saw the byline of a respected bioethics contributor and thought that I would find a well-written article detailing Andrew Wakefield's many ethical shortcomings. As I expected, the article focused on the widespread fear of vaccines caused in large part by Wakefield's false claims, as well as the "immeasurable harm" done to children by maladies that could have been prevented.

I also found something that I was not expecting to find from an author who certainly should have known better: Language characterizing autism in melodramatic and grossly inaccurate terms such as "dread disease," "epidemic," and "plague."

Given the fact that Arthur Caplan previously has written articles cautioning against eugenics and pointing out the contributions of autistic people to society, I do not interpret this language to mean that he literally views our existence as a plague or that he has an actual dread of us. Rather, I think that he might have been using the language in a rhetorical fashion to illustrate the extent of the parents' fears. That would have been fine if he had put it into the proper context, such as by stating that the exaggerated media coverage of autism caused many parents to think in such terms. But instead, he used broad, unqualified language that gave the misleading impression he was describing facts.

In recent years, as Caplan ought to know, immeasurable harm has been done to autistic people by careless journalism that encourages the public to dread us like the plague. Autistic children are being excluded from schools or put into segregated classrooms in ever-increasing numbers. Job applicants and employees often face discrimination in the workplace because they look autistic. Bullying and abuse are rampant, while the victims get the blame for not being sufficiently normal to make friends with their tormentors.

A correction of the article and a prompt apology to the autistic community are needed. Arthur Caplan can be contacted at the following address:

caplan@mail.med.upenn.edu

Can you relate?

I've mentioned before that one of the advantages of the Internet is its diversity, which has the salutary effect of correcting misconceptions and prejudiced statements almost as soon as they occur. When someone posts biased or incorrect information about a group of people, it's highly likely that one or more readers will set the record straight.

But sometimes such comments can get rather incongruous. In response to my last two posts, a few people seemed to think (1) that I might be prejudiced against poor whites, Southern whites, and/or hillbillies because I used dialect in describing small-town ignorant attitudes, and (2) regarding my discussion of the Ghost Dance of 1890, that I shouldn't make historical analogies that suggest it is possible for the average person to relate to anybody except whites.

Oy.

I don't disagree with the general observation that a person cannot fully relate to the lives of those who belong to a different nationality, race, time period, and so forth. However, it's also not possible to fully relate to the perspective of the guy who lives down the block. The range of human experience is vast. I believe that it is not only appropriate, but essential, to try to broaden our understanding of how our lives relate to those of others, even though such efforts will always fall short. When we identify ourselves primarily with one group (whether it is defined in terms of race or anything else) and assume that we cannot relate to anyone outside the group, our lives become much the poorer for it.

I'll give you an illustration of where such assumptions can lead. This is a true story, unfortunately. I have an older relative who lives in a part of the city that is no longer safe. There are frequent drug deals and people getting shot at the corner gas station. He won't even consider leaving the area, however, because he only feels comfortable in an all-black neighborhood. If he moved somewhere else, he might have white neighbors; and he is firmly convinced that he can't relate to white people and that it is dangerous to even try. He has on occasion lectured younger family members that they must never socialize with white co-workers after hours because it might just be a ploy to lure them to some isolated area and lynch them. The Internet is never going to change his views because he is highly unlikely to visit any websites that might challenge his prejudices.

When I blog (and in other areas of life too), I try to keep in mind that whatever assumptions I make about other people are likely to be wrong. Of course, any interaction with or discussion of others must necessarily involve making assumptions of one sort or another, given the fact that there's no way to know everything that might be part of another person's thoughts and experiences. As we go through life, we constantly adjust and recalculate our assumptions; but they never disappear entirely, no matter how well we may think we know another person.

To be clear, the previous sentence refers to people in general, not just to autistics. I don't believe that the need to adjust one's assumptions is unique to autistics or that there is some sort of magical social superpower enabling non-autistics to read minds. People may be more accurate in making assumptions about those who have neurological traits similar to their own; but that also can be said about people of the same gender, nationality, or any other subset of human experience.

The extent to which it is possible to relate to others always depends on a great variety of circumstances, some of them changing from one moment to the next. And it is by necessity an imperfect process, full of misunderstandings. As we begin a new decade, however, I am hopeful that the personal connections created by blogging and the Internet will lead to more awareness of social assumptions and more vigilance in correcting them, while recognizing that there will always be more to learn.