Sunday, January 21, 2007

Autism Every Day's harsh realities

Here are some statements by the leading lights of autism advocacy in Canada. All these people are also prominent leaders of FEAT.

Jean Lewis (responding to the Auton Supreme Court of Canada decision):

I've had parents call me about the possibility of refugee status to the United States. Can you believe it? Canadian refugees to the United States where they don't discriminate against disabled children

Norrah Whitney (testifying in the Senate):

Federal laws such as these are what make the United States a remarkably better place for people with disabilities to live than Canada. In the U.S., equality in services, jobs and housing for people with autism and other disabilities is not optional. It is the law.

Andrew Kavchak:

What is urgently needed now are three pieces of federal legislation – a Canadians with Disabilities Act, a Mental Health Parity Act and a Federal Individuals with Disability Education Act (IDEA). All these federal laws are what makes the United States a remarkably better place for people with disabilities to live than Canada. In the U.S., equality in services, jobs, housing, et cetera, for persons with autism and other disabilities is not optional -- it's the law.

Sabrina Freeman, from an interview after the Auton SCC decision:

There are no legal avenues left, she said, adding that parents have three choices: move to the United States, put children in the care of the government, or try to keep paying for the treatment on their own while trying to get federal legislation that is similar to that in the U.S.

The United States, said Freeman, has two "extremely" strong laws - the American Disabilities Act and the Individual Disability Education Act - to protect people with disabilities, she said.

"We have nothing in Canada except for the Charter [of Rights and Freedoms]. We should be proud of our Charter, our Charter is fantastic," she said, "but you know what? It's not worth the paper its written on."


Indeed, these are only a handful of the possible statements from Canada's elite autism advocates, all praising the US as a place where services, particularly ABA/IBI, are provided to autistics as a matter of course. Ms Lewis' "refugee" story appeared in the media around the world, informing everyone that the US is the place to be if you have an autistic child. And who would dare, who would have the temerity to disagree with these autism advocacy heavyweights?

Now it is again these and other pre-eminent Canadian autism advocates who have uncritically embraced then forcefully promoted the Autism Speaks video, Autism Every Day.

The purpose of this video is to show the harsh realities of living with autism, and I think this hard-hitting video accomplishes this extremely well. I'll get back to this point a bit later.

What is striking about this video is that all the autistic children are doing extremely badly, and all their parents are miserable and have appalling lives. This is according to the parents themselves. Their lives are hell. Their children are doomed.

They must live in Canada, where according to our autism advocates, the services for autistic children are so grossly inadequate that Canadian parents are considering becoming refugees to the US, where the ABA/IBI services they demand are there for the taking. And as you can see, Canadian autism advocates are demanding sweeping changes to laws in Canada so that autism services are provided exactly like they are in the US.

But back to Autism Every Day. It's Canadian, right? It must be, because our famous autism advocates support it to the hilt.

But in reality, or in "autism reality", Autism Every Day is 100% American. Those doomed children and their suffering parents are all Americans. They live exactly where Canada's autism advocates want to live, so they can--they say--freely and easily get all the ABA/IBI services they want.

Because disagreeing with autism advocates is perilous (see Canada's notorious autism advocacy flagship website, commonly known as the "hate site"), we are required to assume that the American parents in Autism Every Day had free access to the services that autism advocates in Canada are demanding--that is, unlimited ABA/IBI.

Another glossy, hard-hitting Autism Speaks effort, an article in the magazine Town and Country, helpfully shows that American children are getting ABA/IBI, sometimes in impressive amounts (e.g., 50hrs/wk), and of course this would be state-of-the-art ABA/IBI.

As a result, after 3 years of very intensive ABA, one autistic boy still cannot dress himself independently and is projected to require three more years of his 50hrs/wk ABA program to be able to signal "bathroom". His parents are miserable and devastated, and express their wish that their son would drown. Why? Because it would end his suffering, even though ABA/IBI is promoted as "fun" (strangely, in this Autism Speaks article, it's called "grueling"), and this boy is in ABA/IBI most of his waking hours. These parents, who profit from an optimal level of services, also claim that many other parents of autistic children feel just the same as they do, about wishing their child dead.

So Autism Every Day, and Autism Speaks in general (keeping in mind that they have now absorbed Cure Autism Now, as well as NAAR), is a testament to the failure of the services demanded by Canada's autism advocates.

And if Autism Every Day represents the true reality, the "autism reality", of living with autism, as our powerful and influential autism advocates forcefully claim, then it is all the more a monument to the conspicuous failure and remarkable ineffectiveness of the services that these autism advocates are demanding.

Autism advocates in Canada have insisted very forcefully that ABA/IBI is an effective treatment for all autistics. Yet they promote Autism Every Day, in which the 100% failure of the easy availability of ABA/IBI to help either suffering autistic children or their miserable, suffering parents is dramatized to great effect.

Autism Every Day is an excellent record of the harsh realities of autism, if you see it from the children's point of view.

This is the very harsh reality of being an autistic child in a world where autism advocacy is not only prominent and predominant, but ubiquitous and the law.

This is the harsh reality of being written off as a very young child, of having your parents describe you as an appalling burden, of knowing that your parents are ashamed of you, of knowing that your mother wanted to kill you and refrained only because you have a non-autistic sister, of knowing that your parents want to make sure that children like you no longer exist, of being shunted and talked around as if you are non-sentient props, and then being called unresponsive.

When I watched Autism Every Day, my first thought was, what wonderful children. What great, totally cool, wonderful children. I watched it with the sound off. Those kids are marvellous. They can do so many things. They have courage out to there. They have lived through stuff that no child should have to live through, and they are still trying as hard as they can to communicate--to communicate with those who are widely disseminating the anti-scientific information that they can't learn or communicate at all.

Those kids are amazing. They are my heroes. They make sure I (and the people I work with) don't give up, working to find the many things these kids are capable of doing, and finding science- and ethics-based ways to help them succeed as autistic people, and opposing all those who want them in institutions, and working to provide them with a world in which they are welcome, cherished, accommodated, celebrated, assisted, and understood.