Regular readers may remember a few articles in which I've objected vigorously to the description of "Chris," a character based on an actual teenager, as autistic. "Chris" is a boy who became shy while going through a lot of personal problems, including rapid and sudden puberty, in grade six. Bright, perhaps borderline hyperactive, he does talk--freely, fluently, and at length--and make eye contact with lots of people; just not school counsellors.
Well, what about "Tina"? Also based on an actual teenager, "Tina" is a girl who's always had trouble communicating. Tina's mother is hard of hearing, not really deaf, but speaks with a slurry, mumbly "deaf accent." Tina is also hard of hearing, and can be hard to understand when she speaks--which is seldom, because she doesn't hear many actual words.
Whenever I've visited the family, Tina has always marched up and said something polite and proper that she'd obviously worked out in advance. The family deny having coached her, and each of her lines has been something a normal child would say. But she doesn't stick around and get into a conversation after saying something normal. I'm not sure whether anyone has ever managed to have a conversation with Tina.
She doesn't see well, either; Tina was wearing baby glasses at six. Because she's learned spoken and written English so slowly, it's hard to guess Tina's real I.Q., but it's probably low. She has no best subject or conspicuous talent.
As a small child, Tina first caught my attention because her mother was "letting the children toilet-train themselves when they're ready." She was making a sort of dog-whine noise to let the nearest adult know she needed a clean diaper...at four. (She toilet-trained herself at five.)
But until she was fourteen, nobody ever thought of Tina being autistic. She did make eye contact. She's quite sensitive to emotional feelings. Sensitive enough that, when I heard that she'd been diagnosed as autistic at fourteen, I knew that she was learning to read nonverbal communication and realizing that she's perceived as uninteresting, unattractive, and dim-brained, and becoming more deliberately withdrawn.
She's depressive enough without that. Tina has never seemed a happy child. Her mother and grandmother were world-class beauties, and Tina's face is just like theirs...apart from the expressions that so clearly show discouragement, frustration, lethargy, and dyspepsia. Without trying to talk to her, you'd guess that she's the type of child who would be likely to answer a question with "I don't know and I don't care," or maybe "I'm not talking!" She is. She does. Never in an aggressive, defiant, rude way; always in a way that expresses hopelessness and, I suspect, ill health.
Granted that Tina is not neurologically normal and does undoubtedly have some brain damage, does it matter whether she's labelled autistic or something else? There are different opinions. I think it does matter.
Could it actually be helpful--to others, if not to Tina--if she's classified as autistic? Could her "high functioning," in terms of having some sense of how other people feel, be encouraging to genuinely autistic children, or to their parents or teachers? Again, there are different opinions. I think it's more likely to be harmful, if there really are a great number of genuinely autistic children who are never going to develop even the inadequate social skills Tina has, for them to be burdened with the expectation that they should be like Tina.
Could it be helpful to Tina if she's grouped together with other children who are conspicuously more brain-damaged than she is, thus allowed to be the high achiever in the group, instead of being grouped with neurologically normal children and always being behind the pack? Again, there are different opinions. I think the outcome for Tina, specifically, would probably depend on the individual teacher assigned to her, but for children like Tina the overall probability is not encouraging. Looking at a bunch of autistic children is scary and depressing enough for normal people. For Tina, not only looking at that group but living with the idea "I'm one of this group; I look to other people the way this group look to me," could be catastrophic.
For me--I know I'm a dinosaur--even the term "retarded" seems a kinder way to describe Tina than "autistic" does. "Retarded," or "delayed" if you prefer, literally means that Tina is still growing up and that some aspect of her, specifically her language and other school-related skills, is developing more slowly than average. That's a fact. Whether there's a specific, permanent abnormality in her brain is an unknown proposition; whether any such abnormality would resemble the specific irregularity associated with autism is unknown and unlikely.
We know that, for unalterable physical reasons that aren't their fault, most people with autism are always going to be, in practice, almost as badly impaired as people who choose stupidity. (Stupidity being a choice is a separate rant.) We do not know any such thing about Tina.
Since we don't know what's physically going on in her brain, we can't rule out the possibility that at some point--possibly in her twenties or thirties--Tina will catch up with normal people. We can't guarantee that Tina will never ask admirers to guess what was unusual about her childhood and consistently get answers like "You were prettier than other little girls." As in fact, although you don't often see her with an attractive focussed, restful, or cheerful expression on her face, she is.
Which is a separate problem. There's no history of autism in Tina's family, but there are histories of several physical weaknesses that I believe have combined to interfere with Tina's mental development. If she asked me, I'd advise Tina not to have children. And maybe this is a relevant detail; I'm trying to write for the benefit of kids like Tina, not Tina as an individual, but who knows how many children's mental development is being impaired by physical problems that have nothing to do with "ballooning brains." I know this family as fellow celiacs; other conditions that run on one side or another of Tina's family include thyroid failure, diabetes, blindness, deafness, Parkinson's Disease, cardiovascular disease, and congenital heart defects; neither of her parents was expected to live as long as they have.
But if Tina is a slow learner, an extremely poor communicator, shy, sensitive, and withdrawn, doesn't that place her somewhere "on the autistic spectrum"? I think there is some--limited--benefit of thinking of all diseases and disorders as part of a "spectrum" that includes each and every one of us. If you have 20/20 vision, even with glasses, enjoy it while it lasts; it probably won't last through your lifetime; sooner or later you will become aware of yourself as being "on the blindness spectrum." For most purposes, however, it's not helpful to lump sighted people together with blind people. The concept of people with severe visual impairments being "legally blind" may boost efforts to offer more nonvisual aids to mobility and communication for all of us, but most of the time it's more helpful to define exactly what individuals are and are not able to do with their eyes.
In order to be useful at all the term "autistic" must not be stretched to include everyone with perceptual impairments or brain damage of any kind. It literally means someone whose perceptions are so radically different from other people's that the individual does not relate to or communicate with others at all. Discomfort with the mere idea of such extreme impairment may prompt some of us to make wisecracks about those who disagree with our opinions here. Autism is not about opinions. Autism is about being so far out of touch, sight, or hearing from consensus reality that the opinions you have aren't even about things other people think about.
When I was working a booth in a craft market, Chris came in with his family, I talked to them, and Chris spoke right up, giving me a long list of video games he was hoping to find for sale secondhand. When Tina came in with her family, her brother (also wearing baby glasses) started talking first, and Tina politely interrupted, smiled, showed me the new doll she was carrying around, then faded back and let everyone else talk. When "Blair," who really is autistic, came in with his family, the others started talking and Blair picked up two objects; during a lull in the conversation I asked him whether he was interested in one of the objects he was holding, and his whole body jerked as if it had been shocked and he almost fell over sidewise.
That's the difference between other learning problems and autism. A competent teacher, or any intelligent adult, can understand learning problems. Nobody can really understand or predict the problems caused by autism. Trying to understand Blair in terms of either Chris or Tina is no more likely to help Blair than trying to understand Blair in terms of ourselves.
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