Friday, January 2, 2009

Autism-Related News and Miscellany

I found out from ABFH that GRASP's Michael John Carley has been reaching out to Autism Speaks's Alison Tepper Singer. Well, actually I already knew that, being a subscriber to the GRASP newsletter: what was news to me was that the "understanding" promised seems to be only one-way.

Two years after Carley wrote these paragraphs,

It's probably very traumatic for the parent of the severely-affected child to be lectured on the immense potential inherent in the brain and ability of a person on the spectrum. If, when they ask for help, they were to be told no, because their child might have a [Nobel] prize in him, I can imagine fewer injustices that would be larger than that. Wouldn't that seem to insultingly invalidate (sic) all the hardship they were going through?

Wouldn't it also be equally scary for someone on the spectrum who is desperately seeking positive self-images to be lectured by the world that his life will be, or is, awful? (emphasis mine)
the founder of Autism Speaks, Suzanne Wright, wrote a short article for Parade magazine including these lines:
Some may view autism as the disease du jour, the cause of the moment. That trivializes what many are enduring. Families are literally going broke trying to provide their children with the services they deserve. Adults with autism are failing to meet their potential.
We're now playing catch-up as we try to stem the tide and ultimately eradicate autism for the sake of future generations. If we continue our current trajectory, we'll get there in my lifetime. (emphases mine)
Now, in theory I am all for outreach efforts; I think autistic adults are the very people parents of autistic children could most benefit from talking to. But a problem arises when the two sides (and it's to be pointed out that GRASP is hardly an all-inclusive autistic self-advocacy group; ASAN might have been a better choice), rather than meeting in the middle, meet far to one side because only one party is willing to compromise. We've seen how well that works in the past, oh, twelve years of US politics, with the Democrats' steady march to the rightward-creeping "center" while the Republicans stay planted on the far right. It's nasty. All sorts of groups --- women, gays, people of color, poor people, non-Christians, disabled people, transpeople, immigrants --- suffer from a political discourse that shunts them aside in favor of courting rich, white, married Christian men ad nauseam. I don't want that to happen to the autism community, with the interests of nonverbal or multiply disabled autistics thrown aside in favor of a civil accord between "passing" Aspies/HFAers and the cure-autism-now crowd.

In the comments on ABFH's post, I found this post by Socrates rounding up autism-related UK news stories. It wouldn't have been of much interest to me (except for the bit about a new autism prevalence study --- I am quite confused about the actual prevalence, having seen a post at Autism Crisis casting doubt on the more recent figures) if it weren't for the mention of Maxine Aston near the end of the post.

Finally a New Year Quiz:

Who said "Living with an autistic man can give you cancer", was it?

a) Tony Blair
b) Groucho Marx
c) Karl Marx
d) Maxine "would you like to buy a signed copy of my book" Aston.

Curious to see if she really said that, I headed over to her site, specifically the page on Cassandra Affective Deprivation Disorder. (Cassandra disorder is Aston's name for her notion that relationships with one autistic partner and one NT partner subject the NT partner to cruel emotional deprivation, putting the NT partner into a depressive state Aston compares to that of SAD sufferers in winter).

I found she does indeed say that: on the "Healing of Cassandra" page, she lists all the physical and psychological symptoms that she thinks can be blamed on the autistic partner's obtuseness and unintentional cruelty:
Physical Effects
  • Migraines
  • Loss or gain in weight
  • PMT/female related problems (I think PMT might be what we Yanks call PMS?)
  • ME (myalgic encephalomyelitis) (Might be the same as Chronic Fatigue syndrome)
  • Low immune system - colds to cancer
There was also

Mental Health
  • Anger turned to depression
  • Anxiety
  • Phobias - agoraphobia - flying - social
  • Asperger ways
  • Complete breakdown
  • Medication and therapy

The "Mental Health" list reminds me a lot of Edgar Allan Poe's poem "The Raven" --- disproportionate emotional response to random events. We don't read that poem and feel angry at that horrible, heartless Raven who drives the speaker into catatonia; we can see that the speaker is egging himself on, realizing that the bird can only say one word and deliberately asking it questions that stoke his emotional fires. We decide that the speaker must have already been in pretty bad shape before the Raven ever tapped on his door.

None of this, of course, should be taken to minimize anyone's experience of real emotional abuse, but I do not believe merely being autistic and having an NT romantic partner constitutes abuse. Indeed, Aston's own work (reported in her book --- yes, I bought it --- Aspergers in Love) indicates otherwise. She tracked a bunch of mixed autistic/NT couples and found many successful ones, and that the major predictor of success was awareness that the autistic partner was autistic. A clear understanding of one's own, and one's partner's, nature and limitations is always going to make for a healthier, more realistic outlook on the relationship.

When I mentioned this disparity before on ABFH's site, another commenter (Alyric) told me that Aston probably had an editor breathing down her neck when she wrote the book, preventing her from going off into "autism = abuse" territory. Seeing her site, I think that's a reasonable explanation. (I'm going to give my partner cancer? Really? And PMS too? --- That'll be quite a trick, since he's a guy).

That brings me to the other thing that's bugging me about her site: despite mentioning on the Cassandra homepage that both men and women can get the disorder, the entire rest of the site's content proceeds from the assumption that the "Cassandra" is female, and her callous autistic partner is male*. The whole thing frankly reeks of heteronormativity and "Men are from Mars, Women are from Venus"-type essentialism, with the male stereotype in this instance also being pathologized.

*In her book, Aston does talk about autistic women in relationships, though she says the women are much more likely to be in relationships with other autistics than the men. I should research that --- both to confirm it, since Aston is clearly not the most trustworthy, agenda-free source, and to see if I can't find out why --- it could be very interesting to explore that little difference, if it in fact exists, from a feminist perspective.


abfh said...

the women are much more likely to be in relationships with other autistics than the men. I should research that

This is probably based on what she has seen in her practice. Because of social differences in gender expectations, I'd guess that there wouldn't be many non-autistic men visiting a counselor like Aston to gripe about their autistic wives who don't talk enough or show enough displays of affection, etc. Society seems to expect men to be happy with women who don't chatter much.

Anonymous said...

Interesting that the partners of Aspies may get ME (yes, also known as Chronic Fatigue Syndrome)

I have read that women with CFS are much more likely to have autistic children. Wonder why?

Gonzo said...

"OH MY GAWD ASSBURGERS IS CONTAGIOUS!!!!1!"Hahahahaaa! *snork*
I remember when I read Socrates post, I thought the cancer thing was a hyperbole, so I checked out Aston's page, too. Unbelievable how someone can be so callous and claim this without a shred of evidence!
And shame Socrates deleted that post, it was a real classic.