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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Wednesday, June 13, 2007

 

Autism: A Call for A National Funding Strategy

Today in the Globe and Mail, Brenda Deskin's son Michael, autistic, is a cousin to Eugene Levy. Levy, who has, according to the article, "only met Michael for the first time yesterday," decided that "this is a good fight here." He is holding a press conference in Toronto today to plea the government for ABA to be funded under medicare. He says in the article, "it's breaking families -- the emotional trauma and expense alone." Is this sounding tired and familiar?

Dr. Wendy Roberts is in support of this ABA movement and is quoted as saying "she has seen grandparents lost their homes and spend $80,000 a year for treatment." Not sure where Dr. Roberts stands these days since I had my last meeting with her. On the one hand, she wants to celebrate autism with art shows, on the other, she wants to treat autism with a treatment offensive to autistics. This desire to please everyone isn't accomplishing a thing. What we need FIRST AND FOREMOST to be just society, is to include autistic people in this dialogue. There are so many and we have them at TAAProject.

The article also starts with the line that autism "is no laughing matter," relentlessly and unethically making comparisons of autism to cancer. Hayley Mick, the reporter begins the article thus:

"When Canadian comedian Eugene Levy things about autism he pictures a scrawny kid. The kid is dwafed by other kids, who have names like cancer and diabetes and are protected by weathy foundations. And when they need treatment, those kids are swept into the loving arms of Canada's health care system."

Adam...scrawny? Dwarfed? Afflicted with a disease akin to cancer?? HOW DARE YOU IMPOSE YOUR SORRY "ADVOCACY" and metaphors to paint a pathetic picture of my beautiful child! How dare you create such a scary picture that it becomes increasingly difficult for our children to be treated as children and not someone's "client" or "project." And if they get included at all, it seems like a miracle.

Once again, Deskin and her partners completely ignore what the autistic community has to say -- namely autistics and the many parents of adult autistic children who are tired and offended by her constant referencing of autism as nightmare. If we are living a nightmare, she is perpetuating it through a basic violation of excluding autistics from her brand of autism advocacy.

She does not include any autistics -- at all. It is clear that she thinks that they have no right to be in "her fight." She does this for herself, not for autistic people.

She does not include other parents who do not want ABA for their children as the sole choice of education for their children. Deskin is trying to legislate what is right for others when we do not feel it is right for us.

She ignores the fact that Lovaas, to which she lovingly aligns herself in reference to ABA treatment, never apologized for his use of aversives. She ignores how that infamous 47% "success rate" was actually achieved. She is factless for her own convenience. For quick references that will lead you to more reading, read: www.autismcrisis.blogspot.com; No Autistics Allowed and Dr. Gernsbacher's paper: "Is One Style of Behavioural Treatment `Scientifically Proven?'"

She ignores an immense disability rights movement, to which autistics belong and the fact that the disability community in North America makes up the largest minority group who are TELLING US ALL what it is like to live with a disability, and what they need.

So, does she serve the greater community? Does she take into account that we want our children to be included, to have lives filled with joy, to not be confronted by stigma and stress that she continues to perpetuate, to have access, to live in safe environments, free from maltreatment that ABA has been at fault for? There is no such thing as "good ABA and bad ABA." It is time to stop using the term as a shorthand for a multitude of services, and acknowledge that there is a toolbox out there with many different tools that we dip into that is unique to each child. Above all, we need to acknowledge that autistic people are people first. They deserve help with our utmost respect -- not sensationalized propoganda that draws on heartstrings and elicits pity.

Families deserve to be supported, they deserve to be empowered to make their own choices for therapy and education. They deserve access. We need a strategy that encompasses all of our needs. And if Brenda Deskin wants her ABA therapy, let her have it. Just don't make us have to take it. Let's build a tool box that we construct by:

1) including autistic people in helping us understand and build appropriate education and self-help skills programs by revealing their early experiences;
2) build on what was successful for them;
3) build an anti-ableism strategy so that autistics and other disabled individuals have access and acceptance;
4) include all parents to work alongside autistics to develop generally accepted multi-model methods that honour each individual's learning style (this could be OT, SLP, Play, and one-to-one education/assistance as well as family appointed shadows and/or service dogs, assistive technologies, vocational training, autistic mentors, humane and supportive community living environments, and more)

Overall, let us work together to state that YES, our kids deserve more and we need to focus on our to support autistic people and their families. Our kids are great and have lots of potential given the patience of others and a change of attitude in terms of the fact that disability is part of human experience.

In other words, we need to get away from this manner of advocating -- that excludes the very people it seeks to "support" -- and talk about what autistic people really want and need by including them.

Deskin, et al -- are you ready for a reality check? It's not all about you. Most of us are coming out of the dark ages. Will you decide to stay there? If you do, please don't drag the public back into those days where the disabled weren't treated as human at all. Having said that, I do hope to include everyone in much healthier strategy that includes autistic people in developing.

I'm sorry, Mr. Levy, that you have been dragged into this "living nightmare" of Deskin's "advocacy." I'm certain had you really done "your homework" beyond Deskin's propoganda, you would see that many autistic people and families find this method of "advocacy" and this one-size-fits-all approach, drenched in human rights violations and exclusion of the very people they seek to "support," is not the way we all want to go.

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10 Comments:

Anonymous culvercitycynic said...

Eugene Levy has always struck me as being on the spectrum.

11:00 AM  
Blogger farmwifetwo said...

Never ends does it.

If they EVER demanded my beautiful happy son return to that MISERABLE child he was during ABA...

I'd pull him out of school INSTANTLY!!!

S.

12:54 PM  
Blogger farmwifetwo said...

http://www.cbc.ca/health/story/2007/06/13/autism-strategy.html

Found it.

Quote "Will our MPs summon the necessary courage and political will to overcome their political impotence by overruling the entrenched health-care technocrats and do the morally right thing by our children?" asked Norrah Whitney, founding director of Families for Early Autism Treatment of Ontario."

Not as long as I can continue to meet up with the MPP and MP of London, Middlesex, Elgin. And I had a lovely chat with the MPP of Oxford just a couple of mths ago.

I told all of them I want the $$ to purchase my own therapies not gov't mandated ones that don't meet my goals or needs. I wanted full time EA support.. not this parttime crap I'm going to get next year.

The Liberal one... not going there...

The Conservative ones.. I got told "we'd love to. But it's 2 tier health care and Canadians refuse to allow 2 tier health care". And we can do nothing for Ed until we're back in power.

S.

Off to put this link and your blog post on my blog.

2:24 PM  
Blogger VAB said...

Sounds like we need to be writing to both the Globe and Mr. Levy.

I just put it on my to do list.

5:01 PM  
Blogger Autism Reality NB said...

JOY of autism? All I see on your pages is hatred of parents trying to help our children.

8:52 PM  
Blogger Estee Klar-Wolfond said...

Hi Autism Reality (Harold Doherty from NB),

No, not hatred, dear. Perhaps a little tired anger at the fact that there is a certain group of people who insist on negative portrayals of autism that continue to create obstacles for our children.

I do not want ABA as a legislated treatment for my son. If schools begin to say that because he's autistic that he needs to be funneled into an ABA program or under a "National Surveillance Program" (which exists), then I will no longer refer to him as autistic.

I want parents like us to have a choice of an educational toolbox and to stop negative referencing of autism as an illness. I want people to have a choice. Even autistic people have different opinions and want that choice.

But most of all, I want my son to be regarded as whole and human. Which this group, with its referencing of autism to cancer, which it is nothing like, continues to do.

I could write more, but I'm getting Adam ready for his non ABA school -- where he thrives.

6:29 AM  
Blogger Estee Klar-Wolfond said...

What is troubling about this one-sided "advocacy" is that

1. It does not include autistic people;
2. It presumes (and says) that ABA will "ameliorate" the symptoms of autism and therefore will "save" money in the future (e.g.; "Pay now or pay later")
3. It is generally non inclusive. It does not include the voices of many other families who do not want ABA as an "educational tool" or a "cure" or whatever the word is of the day.

If people want to do ABA, that's their choice. It should not be, hoewever, government legislated.

We should get away from the ABA term as shorthand for a plethora of other services, which seems to be the case in Canada now. And as such, it is no longer truly ABA or EIBI.

Autistic behaviours should not be the focus, which is the case of ABA. Many behaviourists do not even understand autism or autistic "behaviours" at all. To treat autistics in this way, over and above the teaching of skills in many cases, is extremely dangerous to autistics.

I could go on. But we do experience joy despite the Deskins and the Doherty's advocating otherwise.

Despite this, I think we are doing a disservice to autistic and disabled citizens overall. We may never agree, just like the deaf community doesn't agree on implants. But what we MUST agree on is the value of autistic people as equals in society, who throughout their lifetimes, need some kind of support -- and that support differs. This is what enables people to contribute to society.

We need advocacy that addresses these complex issues and diverse needs -- not a group of people claiming to be the sole voice of autism in Canada -- again, without one autistic person there.

7:35 AM  
Blogger mumkeepingsane said...

I don't want ABA forced on my son. I am bothered when some try to say they speak for me and all parents of autistic children when they are advocating for what THEY want.

I hear you on the 'tired anger' when it comes to how autism is portrated as worse than cancer or a nightmare of gigantic proportions. *sigh*

9:28 AM  
Blogger ballastexistenz said...

Not to mention misrepresenting autistic people and not allowing us to respond.

Harold has repeatedly referred to me as somehow deliberately embracing an "autism disorder" label, when the fact is I was diagnosed with autistic disorder (not "autism disorder"), no embracing necessary. He has not printed any of my corrections of this, so it simply stands as a "fact" about me, that is supposedly different from other people with this diagnosis.

12:26 PM  
Anonymous -Brian- said...

Ahhh! "Autistic Disorder"... That was penned by the pros of the American Psychiatric Association in their DSM manuals, again, with no consulation whatsovever as far as people with this condition (not "disorder").

It would be a ludicrous as stating that all sports fans suffer from an illness "fanatic disorder", and start to demand funds from governments as to the "ABA" treatments deemed "necessary" for children having any desire for this type of competition, (just because their parents are exasperated at having to put up with their sports perseverations every day), without any input from these people as to their condition.

Who determines, in any society the world over, what is a condition worth the support of all those who practice that activity/lifestyle? If a condition is disliked by a few, does that make it into a "disorder" and some other very ingratiating terms?

Autistic people are just as brave with their condition as sports fans are with theirs. Why would anyone classify one of these conditions as a "disorder", without labelling the other the same way?

Should sports fans be "cured" of their practices, through billions of units of currency, to fund programs designed to get children away from such practices? That is what's happening to those who practice autism...

3:00 PM  

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