Apocalyptic Advocacy

One of the things I’ve noticed in the discussions and debates regarding autism is the regular use of 'impending doom' (cue ominous music) by advocates to make their case. This use is not limited to one particular ‘side’ of the autism debate – it can be seen at both ends of the viewpoint ‘spectrum’. And while I can see why some may feel that appeals to otherwise 'impending doom' (cue thunder) may strengthen their case, in the end I think it harms all of us. There are enough legitimate points to be made in autism discussions without having to unduly exaggerate or fabricate. And misinformation - especially misinformation that casts autistics in a damaging light – can outweigh the benefits that advocates are seeking to achieve.

One of the recent examples that comes to mind - courtesy of a post in Michelle Dawson’s blog - is the article Autism needs hope, written by Margaret Wente in the Globe and Mail on Nov 21, 2006.

From the article:

"My son is in a mainstream class. He goes to other kids' birthday parties," says Jean Lewis. She is the mother of an autistic 12-year-old and also a director of a B.C. parents' lobby group. Where would her son be without treatment? "He wouldn't be living at home," she says. "Without treatment, kids like this are usually institutionalized by the time they're adolescents. They're living in restraints, living in diapers. They have to have their teeth removed because they bite."

Um, excuse me?

The BC parents lobby group in question is F.E.A.T. of B.C. (F.E.A.T. stands for Families for Early Autism Treatment). A major goal of F.E.A.T. of BC, as per its official petition, is to "amend the Canada Health Act and corresponding Regulations to include IBI/ABA therapy for children with autism as a medically necessary treatment and require that all Provinces provide or fund this essential treatment for autism".

My daughter (3yrs 6mos old) is in an IBI program five mornings per week. While she was diagnosed as ‘autism, at the severe end of the spectrum’, and is approved and on the waiting list for IBI funding (currently running 'neck and neck' with university acceptance in terms of timing), we currently pay for her treatment privately. We pay a lot – a lot more than 50% of the figure quoted in the article. And for the moment, we feel that it is worth it. As such, groups like FEAT should theoretically be natural allies, or at least fellow travelers.

(BTW, for those who want to criticize us for using IBI, you may want to read here and here first to find out what we’re actually doing and believe. As an example, the Bear is not in IBI to teach her to pass for 'normal'. I’m sure that there is plenty of scope to criticize us for what we ARE doing without having to make things up that we DO NOT DO or support.)

But to me a central issue for lobbying groups and advocates is how they portray autistics. One might suggest that the quote above was an isolated statement. But from a story about ABA in 2005 referring to Ms Lewis’s son:

"Now in grade five in a regular classroom, the boy is a busy 11-year-old. He bikes, skis, swims and even plays clarinet in his school orchestra. He's also, "an active participant in family life," says Mr Lewis, who also serves as the President of the Autism Society of British Columbia. "Whatever we do, he's part of it."

But…

"But if his son's treatment was stopped, Mr Lewis is convinced the child would need to be institutionalized, possibly immediately. "If not now, then shortly," he says."

And from an Autism Fact Sheet on FEAT BC’s website:

"Without treatment, autism is a lifelong affliction that results in 90% of afflicted individuals placed in institutions and residential facilities, facing an unfulfilling and bleak existence for both the individual and family members."

Clearly the view being promoted is that autistics are dependent on ABA to avoid an 'unfulfilling and bleak' life of institutionalization (without teeth?). So much for Floortime, RDI, and other therapies, or implicit learning. (sarcasm) I guess THOSE parents should start saving for institutionalization now... (/sarcasm)

Ms Wente’s article also mentioned the ‘Autism Every Day’ video, including the ‘in another life, I’d love to go out for a bagel.' quote, and "For a glimpse of a day in the life of autism parents" it refers readers to a link to the video.

Personally, I support government funding (and not just limited to IBI - I favour a multi-disciplinary approach) for the support and education of autistic children, as well as required support for autistic adults. In this, organizations such as F.E.A.T. of B.C. should theoretically have my support. But I object to their methods, which clearly involve portraying autistics in a negative light through the dissemination of obviously incorrect information. It should not be necessary to denigrate my daughter to secure funding. Nor should appeals for funding be reduced to 'pay up now or I'll cost you more later'. What about the intrinsic right to an education and equality of opportunity?

As I wrote previously about the ‘Autism Every Day’ video:

"I quite like the idea of a video to explain our lives to others. But I'd prefer that it didn't make my child (by association) look like a ‘nightmare’ inflicted on us (and potentially on others when they come in contact with her). As a parent, autism is hard and painful at times to deal with, but there is also a joy that we can feel from our children, and one that our children can feel, even if we cannot always see it - and I think that much of the time I can see it, written on my daughter’s face. I don't want people to shy away from the Bear, to be afraid of the disruption that they fear she may cause, or to pity her, but rather, I want them to understand her and accept her.

Asking for acceptance does not mean that I'm not going to work like hell to fix her SI, immune, GI, etc. issues. I have no problem with autistic thought per se, but with autistic 'issues' - it is these that I'm working to help her overcome, and I believe there is a link between her medical symptoms and these ‘issues’. Asking for acceptance also does not mean that I won’t try through IBI or other teaching methods to teach or enable her to learn the skills she needs to make her way in the world. Instead, acceptance means recognizing her as a human being worthy of the same respect and rights as anyone else. Implying that she is a nightmare to deal with is not only untrue, but does nothing to further this goal."

In the same way, I believe that the message (as distinct from the goal of funding) propagated by FEAT of BC also does nothing to further the goal of acceptance of my daughter as a human being with full rights and worthy of respect.

I wrote to Ms Wente, pointing out my issues with her article, and closing with the following:

"While it is too late to change your article, might I suggest that you take a second look at this issue, as time permits? I (and probably most parents of autistic children) definitely appreciate anyone speaking on our children’s behalf, but what I’m asking is that you do so in a way that more accurately reflects our children’s reality – good and bad - and ultimately the reality of the autistic adults that they will become. I’m definitely not suggesting that you sugar coat the presentation. The reality is what it is, and should be presented rather than hidden away. But I would also ask that you recognize that our children are human beings, worthy of an accurate portrayal."

I will update this post with any reply, providing due consideration for Ms Wente’s privacy. In the meantime, if anyone else wants to contact her to offer their opinions, her e-mail - posted at the bottom of the autism article - is mwente@globeandmail.com. If you do so, please play nicely. "You can catch more flies with honey..."

In the meantime, I'll start saving for dentures for the Bear. After all, what is a bear without teeth?