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.

26 comments:

Autism Reality NB said...

I suspect that "These kids" are also heros to the parents and others who actually love and care for them day in and day out Ms. Dawson. I fail to see how you have any right to tell these parents what they should tell the world about their own children.

Joseph said...

Part of it is the perception that the grass is greener at the other side of the fence. And there's the small matter of the Autism Every Day video being staged.

To NB: You mean Alison Tepper Singer's daugter must be a hero to her mom? I didn't know people could want their heroes dead.

That child really is a hero. I cannot fathom what she must go through.

Michelle Dawson said...

Hi Mr Doherty,

No sir. I would never tell those parents what they should say. However, I will report what they publicly--in the mass media--say and write (which I'm sure they're not ashamed of), and the consequences of this to other people.

I agree with you, sir, that I do not have any right--that is, any rights--at all. Not in Canada. This is another victory of autism advocacy. And that is another harsh reality of autism.

mike stanton said...

Michelle, I share your view of the Autism Speaks video. The parents in the video are almost without exception, wealthy and well connected. they are spending a fortune on ABA and biomed treatments like chelation. How do poor people raise their autistic kids. who makes videos about them?

kristina said...

As noted in the New York Times article the film, Autism Every Day was made by a video company that produces videos (and promotional ones, it would seem) for corporate clients. If this is a reality, it is one made with an eye towards fund-raising and with certain intentions.

The grass is not always greener, indeed!

Ms. Clark said...

Oh man! I thought the Autism Speaks gang were multi-national. You'd think they could have made another video for Canadian consumption, one where the streets of NYC are paved with ABA therapists... (no, sorry, that's my dream.. sort of...) I mean, where the streets of NYC are paved with free 24 hour a day ABA therapy,

and all the autistic children are cured within a couple of years from 40 hour a week Lovaas style ABA, if it gets started when the kid is young enough... and provided until old age if it doesn't work... and everyone is HAPPY!

ABA really does look like a religion to parents in Canada, and the US is heaven, huh?

elmindreda said...

But back to Autism Every Day. It's Canadian, right?

Absolutely brilliant.

Anonymous said...

The Canadian "autism advocates" have it partially right--the US is a much safer place for the disabled as ABA/IBI isn't going to be federally mandated as a "medically necessary treatment" for autistics anytime soon.

I'm an American working in BC; my 3 1/2 year old son was just diagnosed with autism here in Vancouver. During the whole process every person we ran across involved assured us that we would be eligible for $20k of yearly funding, all you need is a BC health card and birth certificate, no questions asked, parents get to make the choice of therapies (of course, ABA/IBI is heavily pushed and any questioning of that raises eyebrows).I can tell you that in the US any kind of disability funding provided publicly is going to be income-dependent in that it depends on where you live. Most disability programs are dependent comes on the public school system and the quality of public schools in the US is dependent on where one lives and the income level of those areas. Long story short, rich people get great public schools and poor people get lousy ones. Rare exception to this rule. Lower income familes may be able to get some help via Medicaid funding but the income threshold is so low so as to exclude basically anyone above the poverty line.

By contrast, BC hands out $20K/yr to any provincial resident regardless of the family income, all you need is an autism diagnosis, BC health card and the forms for funding, fill them out and they'll reimburse you retroactive to the application date for any services taken. Combine that with the forceful endorsement for ABA/IBI by just about anyone involved in the autism diagnostic "chain" and Canada starts to look like the promised land for FEAT parents.

I know I'm a guest in this country and should hold my tongue but I cannot help remark on how remarkably unrealistic and yes, whiny some of these autsim advocates are. To claim that the US provides some sort of wonderful mecca of early intervention funding for ALL autistics is to grossly misunderstand how social services in the US work. Canada has a LOT more funding available for people regardless of their income levels and is a lot more equitable in that regard. Private insurance companies (what most middle and upper income Americans) will rely on for things like supplemental speech and occupational therapy) is notoriously stingy when it comes to any coverage for what they would call "peripheral" concerns. In many cases something like autism will get a person thrown out of a personal coverage plan--provincial health can't deny anyone coverage.

I want to thank you Michelle, for your hard work and for enlightening me about what the reality of autism treatment is like here in Canada. Our chances of Canadian permanent residency are now basically shot (since my son is autistic and qualifying for funding basically will probably disqualify us from being accepted). I think this is going to be our last year here in Canada, but honestly, getting to know what I have about the atmosphere regarding autism in Canada and what the political ramifications are of Auton and the legal codification of ABA/IBI as "medically necessary treatment", I think the US is a safer place for autistics.

Estee Klar-Wolfond said...

Mr. Doherty seems to believe that none of us have a "right" to speak up for the rights of others, unless we all agree with him. We absolutely have the right to speak up when prejudice abounds. I think that Ashley's parents "love" her too.

But what is right and fair and just here? These are the ethical issues that Michelle raises for all of us to question in ourselves.

Anonymous said...

Man, I just love the way Mr. Doherty and Kevin Champagne both feel the need to share the 'Reality' of autism, as if the rest of the parents raising autistic children are living in some sort of autism fantasy world where everything our kids do is wonderful and worthy of celebration.

So tell us Mr. Doherty, within the confines of your 'reality', how is it that you managed to arrive at your current sense of entitlement?

Unlike 'Autism Reality US', you don't feel the government has conspired to make your son autistic with mercury laced vaccines, so who do you hold responsible?

Who is it that owes you something because you are burdened with an autistic child?

Did you ever do anything to upset your parents? Ever have a toileting accident or break anything? Yeah, it can be a lot worse for a family dealing with autism at times but how would you have felt if your parents made a film like that and said those things about you?

It's different though, right? It's OK because those kids are autistic so why should anyone care? Say whatever you want about them as long as it reflects reality, or at least someone's version of it.

laurentius rex said...

Well I thought I had commented on this blog so was it Michelles censorship as I know she does not like me or Firefoxes java glitches ?

The truth shall out one way or another

laurentius rex said...

Well I thought I had commented on this blog so was it Michelles censorship as I know she does not like me or Firefoxes java glitches ?

The truth shall out one way or another

Michelle Dawson said...

Mr Rex wrote, "The truth shall out one way or another"

This blog, like the TMoB board, is not under moderation.

I have, however, occasionally deleted posts (none of Mr Rex's though).

For an explanation of what may result in posts being deleted, see one of my comments here. I'll repeat it for good measure:

-----------------------------------

There are blogs where throwing invective and insults back and forth is the norm, and apparently some people have time for this. This isn't that kind of blog, and there are autistics and non-autistics who don't have time for gratuitous name-calling and other prominent aspects of the public discourse about autism.

I'm particularly short of time, and I'm not going to take a whole lot of it trying to explain to adults how to behave in public.

As is written somewhere on this blog, I believe autistics deserve better. If you believe that all autistics deserve is exchanges of insults and name-calling, you can find any number of places where your comments will be welcomed. But if you post them here, they may not stay up.

Genuine criticism and multiple viewpoints are welcome, as was and is the tradition on the TMoB board. But if you have nothing to contribute except evidence of your own low standards, you are much better off commenting elsewhere.

-----------------------------------

David N. Andrews MEd (Distinction) said...

EK: "Mr. Doherty seems to believe that none of us have a 'right' to speak up for the rights of others, unless we all agree with him."

Seems that Mr D. is the Canadian answer to John Best Junior, doesn't it?

laurentius rex said...

Well the twofold appearance of my post does give credence to the glitch hypothesis of the loss of my former post.

I wonder why Firefox fouls up with eblogger sometimes, there is faulty java there because I have problems with firefox elsewhere too. Using Opera now

jypsy said...

Seems that Mr D. is the Canadian answer to John Best Junior, doesn't it?

No, not at all David. I'm sorry but Mr. Best Jr. is in a category all his own. Even the most outrageous & nasty Canadian advocate I know I wouldn't put in a class with JBJr.

Larry - I also have a bugger of a time with blogger & Firefox

David N. Andrews MEd (Distinction) said...
This comment has been removed by the author.
David N. Andrews MEd (Distinction) said...

"No, not at all David. I'm sorry but Mr. Best Jr. is in a category all his own. Even the most outrageous & nasty Canadian advocate I know I wouldn't put in a class with JBJr."

Well, that's me telt! Mind you... yeh... I only have what goes on in netty-land to go on... they just seem so similar in their outliiks, it's hard to believe they're different people sometimes...

Jonsmum said...

"Well, that's me telt! Mind you... yeh... I only have what goes on in netty-land to go on... they just seem so similar in their outliiks, it's hard to believe they're different people sometimes..."

Mr. Doherty is simply expressing his opinion. You don't only have "netty-land to go on".
You have Mr. Doherty's own blog where HIS own opinions and views are stated.

David N. Andrews MEd (Distinction) said...

Isn't Mr D's blog actually a part of 'netty-land'?

Being a weblog, I mean....?

Jonsmum said...

I do apologise David. My working class roots got the better of me. With you being a Scott and me a northerner, "Netty" to us usually means something entirely different.
I never imagined you were refering to the "internet". Although I must admit the two have a lot in common.

David N. Andrews MEd (Distinction) said...

"I never imagined you were refering to the 'internet'. Although I must admit the two have a lot in common."

Got to say that sometimes I agree. I have been able recently to stay more or less out of the net world and firmly in real life... better for one, I find.

Jonsmum said...

"I have been able recently to stay more or less out of the net world and firmly in real life... better for one, I find."

I agree. No matter what my beliefs regarding autism are, a recent comment I made remains an important priority, second to continuing to do the best for my son;

"It is quite depressing, and in years to come, when my children have grown, I do not want to look back on their childhood with memories tainted with bad feeling."

rayda21 said...

Michelle,

I very much appreciate your blog & your efforts.

However, would it possible to utilize person first language & to also encourage others to do the same?

Michelle Dawson said...

Thanks, Rayda21!

Autistics have been writing about person first language for a long time. This one goes back to 1992. I agree with it.

See also this article. I agree with this one also.

There's another one near the beginning of this article.

There's not much I can add to those, except that person first language has nothing to do with respect or whatever. Autism Speaks uses person first language. Some of the most offensive and dangerous things said and written about autistics use person first language ("Autism is worse than cancer in many ways, because the person with autism has a normal lifespan"--David Vardy, then 1st vice president of Autism Sociaty Canada, 2003). Person first language has been used in situations where pretty bad things were actually happening to me.

The enforced use of person first language has not helped autistics at all, and may have had the opposite effect (e.g., by suggesting that autism is bad and shameful and not part of a real person; by forcefully insisting that autistics are not qualified to decide even what we want to be called; etc).

DJ said...

While I can certainly appreciate that raising an autistic child is difficult. (I don't have children myself, but I have looked after my fair share of disabled children when I did home care and know how frustrating it can be for a short time, let alone every day!)

However, as an autistic who underwent Lovaas style ABA in an institution back in the late 70's, I can testify to the fact that it is not very helpful. Sure, I act like any other person - so much that no one could tell me apart from a NT on a good day. Unfortunately, all of the medical problems that were causing my "behaviours" such as a bad case of GERD, bowel problems, poor eyesight, migraines and such were ignored in the name of forcing me to "pretend to be normal". (Because autism is all behavioural and in our heads, right? Wrong!)

In 1989, when I was 14, my migraines got to the point where I wanted to kill myself. The problem? Poor eyesight and stress. Pretending to be normal takes a heavy toll on a person.

In 1993, the bowel problems got to be so bad that I grew quite ill and have never truly recovered.

In 1999, the GERD was so bad that it burned my esophagus all the way up. I could not eat or drink anything for 3 months and it just about killed me. I went from 200 lbs to 95 lbs in two weeks. I wanted to die so bad. Was this to be my lot in life? Constant pain until I died?

Had these things been addressed when I was a child, my behaviours would likely have become minimal (when I feel good, my behaviours go away) and I might not have had to live with the pain, sickness and near death that I have had to endure since 1989. That's 18 years of misery for what? To fake normality? To pacify people who can't handle that my nervous system perceives this world much differently and therefore causes me to act different?

I was told I had been cured, but in 1999 when I could no longer pretend, I learned the hard way that I most certainly am not cured. I was flapping, stimming, behaving "badly" and my mother lamented that I was becoming "autistic again". (News for all: I'll be autistic until I'm dead - there is no cure) I have since learned to manage the health problems (I don't tell doctors I'm autistic and it is amazing how well I am treated!), accept my limits, delegate the challenges and succeed beyond anyone's wildest dreams. It took me 28 years to figure that out.

With regards to 40 - 50 hours of ABA/IBI as "necessary": I've been working approximately 40 hours a week since I was about 18. (Started working oddd jobs when I was 13) In my early twenties, I worked two jobs for more than 80 hours a week to pay my rent and bills. I also went through ABA/IBI as a child.

I can honestly tell you, from experience, that working two jobs for 80 hours a week was far less stressful and gruelling than AB/IBI was. ABA/IBI was not fun. It did not help. In fact, it was after the institutional Lovaas style ABA that I received, when a college student would hang out with me show me things, that I actually started improving. The college student spent only 10 hours a week with me while I was at regular day care. That was the most positive experience for me and helped me to learn what the real world was like and how to interact in it. It was fun because I didn't know she was a therapist. I thought she was a babysitter who took me on outings while the other kids took naps. I wasn't stressed out. She comforted me when I was and I learned how to ask for help, and that not everyone wants to see me in pain to be normal.

I just want parents out there to know the possible long term effects of this type of "therapy". I want you to see what your child may be experiencing and what may happen later on. Picky eating may be stomach trouble, other behaviours may be due to pain your child is feeling (like I did), but cannot express.

Is this what people are advocating for? That this become the only therapy for autism? For the sake of the children I pray not. I hope that other options would be looked at as well. Just because a child "acts normal", doesn't mean he's benefitting or feeling better. Take it from one who's been there and done that.

I just don't want to see any child have to go through I had to go through. All children deserve far better than that...don't they?