Friday, December 15, 2006

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?

10 comments:

Anonymous said...

It's a complex issue and difficult to predict future outcome without empirical evidence. However, I do know that with young children, if you back off the therapy, the old habits come back within 24/48 hours. However, I don't know if the same is true is older children and adults.
Best wishes

Ian Parker said...

Hi McEwen,

Thanks for stopping by. I agree that there is a deficit of research regardling long-term outcomes of ABA/IBI. I do find that in our particular circumstances though, right now, that the IBI that my daughter is doing is working for her. I also feel that the fact that it is working now does not mean that other methods might not also have benefits (we do more than just IBI, BTW) or that IBI will always be a good method for her. We need to always be ready to re-evaluate as she progresses.

Having said that, I have no issue with either ABA or ABA funding proponents per se. I do have issues with apocalyptic statements that all that stands between the Bear and toothless institutionalization in restraints is ABA.

I believe that such statements work against both the goals of ABA funding proponents (just maybe they detract from the credibility of the message?) as well as the more important goal of acceptance of those with ASD.

I would prefer that those who interact with my daughter be watching her to understand, communicate with, and enjoy her presence and all that she can add, and to encourage her understanding, communications, and enjoyment in return. The scenarios painted by some advocates encourage others to regard her with fear that she is a 'nightmare' ready to errupt on them and herself at any time.

The Bear's long term well-being will be governed by both her capabilities and the willingness, tolerance and acceptance of others to deal with her. Casting her in a negative light works against the 'others' part of that equation.

Wade Rankin said...

I share your frustration with overgeneralization on all sides of the discussion. Not every child is doomed without intervention; neither will every child progress to a level at which he/she can use their gifts and talents in a meaningful way. Each child is different, and the need for intervention -- and the choice of a particular intervention -- can only be made on an individual basis.

Great post (as usual) Ian.

kyra said...

my god! the teeth removal patrol is on the loose!

i can't imagine saying such a thing. sadly, i'm sure it truly happened, the restraints as well as a host of other inhumane and devastatingly wrong 'treatments' for those autistic kids,teens, and adults who were institutionalized. haven't we learned anything?

i will send an email to ms. wente--a polite and respectful one. thanks for posting this, ian.

Do'C said...

Ian,

I love the fact that you maintain a sense of humor about some of the nonsense (the teeth being pulled to be prepared for by saving for dentures) while pointing out the root of your opinions clearly.

Wade,

You said: "Not every child is doomed without intervention; neither will every child progress to a level at which he/she can use their gifts and talents in a meaningful way."

??? You can see the future ???

What about regression to the mean?

Ian Parker said...

Hi Wade, Kyra, and Do'C,

Thanks all for stopping by and for the thanks and compliments.

Wade, I totally agree with the idea that each child is different and that therefore the need for intervention and the choices to be made must be determined on an individual basis. A 'one size fits all' approach misses the boat that each person is an individual with varying capabilities and needs.

Kyra, thanks for sending an e-mail. We need to take opportunities like this to correct obvious misinformation - especially when some of the organizations speaking 'for us' misstep.

Do'C, humour? I was planning on getting her a nice set of gold teeth to match her sunny smile. ;-)

FWIW, regarding your quote from Wade's comment, I do think that it is prudent to hope for the best but plan and take action based on current circumstances for any child, ASD or NT. Some are late bloomers regardless, but 'respectful' extra intervention (for NTs, one of the names it goes under is 'Montessori' ;-) ) can be a good thing.

abfh said...

Kyra -- yes, it has happened, more than once. A few months ago, an employee of the Judge Rotenberg Center had the nerve to post a comment on Kevin Leitch's blog in which she argued that JRC wasn't barbaric for using an electric shock device on autistic children because, unlike some other institutions, JRC doesn't pull teeth. Ugh.

kyra said...

thanks for the link. i went to kevin's blog and read his post and the comments and all i can say is that i feel sickened to the core. fucking close this place down. and all places like it. i am outraged and heartsick at the thought of kids being treated like convicts from the dark ages. i cannot imagine ANYTHING deserving electroshock. i don't quite know what to do with my fury.

and ian, i see enlightenment made a stop at your blog too. hmmmm.

Ian Parker said...

Hi abfh,

Thanks for stopping by and for the link. Unfortunately it makes horrendous reading, but necessary reading nonetheless.

And Kyra, I toally agree with your sentiments.

Re: enlightenment (comment spam). As much as it pains me to be 'unenlightened' (but after a while you get used to it) I removed all traces of 'enlightenment' - except that sourced from the remaining commenters. ;-)

Prufrock said...

Hey, Ian. Emily here.

Wow, I had heard some bad things about FEAT previously, but I didn't realize they'd stoop to downright lying!

Geeze...