Category Archives: Reads

New Frontiers in Autism

Laura There is a fascinating article at wired.com about how scientists are rethinking previously-held beliefs about autism. Previously it was universally held that a large majority of autistic people were mentally deficient: 75% of autistics were expected to show an IQ of 70 or less on a standard intelligence test.

Now, led by some maverick neuropsychological researchers as well as some politically-and tech-savvy autistics themselves, a growing movement is putting forth the radical notion that autism not be looked at as a disease to be eradicated; rather, autistic brains should be looked at as simply a different form of human development.

A video circulating the internet is at the forefront of this new belief. It shows a young, obviously autistic woman gesturing, flapping, moaning and rocking—looking every inch the low-functioning autistic. Then a computerized voice starts talking and you quickly realize that it’s the woman herself—she can’t speak, but she can type (extremely fast) and communicate via computer. She proceeds to explain—with eloquence and insight—what’s going through her mind while she’s doing these motions: This is her way of experiencing the world, and it’s as natural and normal to her as looking at things is normal for everyone else. She doesn’t need a cure; she wants respect.


Amanda Biggs’s “In My Language” video

One of the major planks in the new movement is growing evidence that the Wechsler Adult Intelligence Scale, the standard IQ test used to determine autistics’ level of functioning, is inadequate for doing this. It races the clock, and generally measures language, social interaction, and cultural knowledge, which most autistics score poorly at. In contrast, the Raven Progressive Matrices test, which is not time-based, more accurately scores for abstract reasoning, pattern spotting or puzzle-solving. In one recent test involving 51 autistic and 43 non-autistic people the difference in IQ between the two tests for the autistics averaged about 30 points (non-autistics showed no differences between the tests). Stunningly, using Raven pulled all but a couple of the children out of the “mental retardation” range found by Wechsler, and sent one child from “mentally retarded” to the 94th percentile.

So why is an inadequate test still being used? Because people are used to administering it.
Digression: This is not surprising to me; every institution suffers in some way or another from inertia—doing things one way because it’s always been done. In one of Jon’s earlier years at school his teacher kept trying to teach him sign language, because it had worked for previous kids in her care. We kept reminding her that since Jon is visually-impaired he would hardly benefit from it, but it never seemed to stick.

The new model of autism has its adherents, but others are skeptical. They argue that even if some autistics are more intelligent than previously believed many are still profoundly disabled and would benefit from a cure if there was ever one to be had. And indeed, when you hear stories about autistics damaging themselves and all but destroying their families’ spirit or homes one might have a hard time agreeing that all autistic behaviour is somehow “empowering” or benign.

David B.’s notes on dog-sitting

Laura Our dog-sitter extraordinaire David B. penned his observations on looking after Photon while we were away, including a nice photo of her nibs at her cuddliest. When we came back Photon was glad to see us, but also very confused as to why her pal David was suddenly gone. For several days afterwards she would follow me downstairs to my office (where the guest room is), which normally she rarely does. When we next have David over for dinner Miss P. will go bananas, which will be fun to see!

Again, David—thank you so much!

A literary dilemma

Laura An article in Slate outlines a truly interesting dilemma in literary culture:

It’s the question of whether the last unpublished work of Vladimir Nabokov, which is now reposing unread in a Swiss bank vault, should be destroyed—as Nabokov explicitly requested before he died.

It’s a decision that has fallen to his sole surviving heir (and translator), Dmitri Nabokov, now 73. Dmitri has been torn for years between his father’s unequivocal request and the demands of the literary world to view the final fragment of his father’s genius, a manuscript known as The Original of Laura. Should Dmitri defy his father’s wishes for the sake of “posterity”? …

To burn or not to burn? It’s not a question we can argue over forever. Time is running out, and the stakes are high: Dmitri’s past pronouncements suggest that Laura is not merely another scrap of paper. At one point he called it “the most concentrated distillation of [my father’s] creativity.”

So do you honour your father’s wish, or add to knowledge and scholarship? On the one hand, Nabokov was a perfectionist who made it clear that he only wanted his finished works to become public. On the other hand, this manuscript fragment might add immeasureably to the Nabokov canon.

One gets the feeling that only because Dmitri is family does he feel that he has an obligation to honour Vladimir’s wishes. Dmitiri was not the first family member to have to agonize over this decision: Vladimir’s wife Véra was first charged with burning the MS, but never did. However, if Dmitri stalls much longer the decision will be easily made: If the fate of the manuscript eventually falls to a non-family literary executor it will almost certainly get published. And the scholars will then be free to dissect it to their hearts’ content.

The Boy in the Moon

Peter Today’s Globe and Mail features the first of the three-part personal story by columnist Ian Brown about his 11-year-old son Walker: The Boy in the Moon. Walker has a rare genetic condition called CFC, which makes our life with Jon looks like a walk in the park.

That said, Ian Brown much of the big picture echoes with our experiences. A couple of quotes that struck me:

For eight years, every night is the same. The same routine of countless details, connected in precise order, each mundane, each crucial.

The routine makes the eight years seem longer, until afterward, when because of the routine the years seem to have evaporated.

and, something that readers of this blog should bear in mind when reading any of my missives:

This isn’t a list of complaints. There’s no point to complaining. As the mother of another CFC child once told me, “You do what you have to do.” If anything, that’s the easy part.

His description of the fights over night-duty between he and his wife, both desperately sleep deprived, ring a bell (though I daresay Laura is more forgiving—or maybe it’s just a lack of anvils at hand).

The one sentence that was totally out of my experience and knowledge was:

The house was a well-organized nightmare. You couldn’t survive as the parent of a handicapped child if you weren’t organized…

I hate to contradict, but our house is just the nightmare part.

A Tale of Woe and Sweet Potatoes

Laura I saw a truncated version of this blog post circulating the dog boards a while back, but friend Bev directed us to the original article. (Warning: occasional coarse language.) It’s a funny and accurate depiction of dogs, from their perpetual hunger to their noses getting out of joint when one of their people leaves for a while.

One thing about having a thinking dog is that they can and do hold grudges. Peter’s childhood border collie Daisy got downright shirty with me when Peter and I started going out together. (One time when we were snuggling on the couch Daisy gave us a filthy look, growled, and slunk away to another room.) Miss Photon holds a grudge against us on the relatively rare occasion that we get angry at her. After a particularly disastrous agility class a couple of weeks back (where I got quite sharp with her) she wouldn’t go near me and sulked on her bed (while I sulked in my office). After a bad walk in the dog park where she’s “forgotten” her recalls or heeling, she’ll avoid Peter or me—whichever person it was who walked her and growled at her—and hang out with the other person. For a while.

Next for bowdlerizing: Dr. Seuss?

Laura Boingboing points to an interesting series of scans posted by kokogiak, comparing the 1963 and 1991 edition of Richard Scarry’s Best Word Book Ever. The 1991 edition was PC-ized by eliminating dated references to Native Americans, neutralizing gender roles, and replacing out-of-date professions with more culturally relevant ones.

These may be worthy goals, but the execution sometimes leaves something to be desired. Many of Scarry’s animals were fairly gender-neutral to start with, and making a bear construction worker more obviously female by putting a ribbon on its head seems even more sexist than the original picture. Why a judge is any more relevant than a soldier is unclear. And some of the edits, like this dentist’s species change, are just bizarre. (Not to mention badly done: By the 1980s Scarry’s eyesight was deteriorating, and there’s a noticeable difference in detail between his 60s and 80s artwork.)

This brings to mind when I was flipping through a copy of Roald Dahl’s Charlie and the Chocolate Factory in a bookstore, and I noticed that some of the illustrations were slightly different than the book I had as a kid (and still have on my bookshelf). Looking closer, I realized that the text and pictures describing the Oompa-Loompas were changed from them having black skin and being from Africa to them having rosy-white skin and being from “Loompaland”. I have mixed feelings about this: I can see why the book was changed, since British books of the time could be quite casually racist; on the other hand, I’m glad I have the book with the original text and illustrations in it.

As for Richard Scarry himself, here is an entertaining profile of his life. (warning—some coarse language!)