No Stereotypes Here

Canadian Autism Bills Pt 3: Open Letter to Ted Hsu

Posted on: July 5, 2011

With the concerns about the Canadian Autism Bills, and the lack of response from Glenn Thibeault, I have decided to contact my own MP and address the issue with him.  The following email was sent Ted Hsu, MP for Kingston and the Islands, on the morning of July 5th, 2011:

Dear Ted Hsu,
First of all, I want to congratulate you on your appointment to Member of Parliament for Kingston and the Islands.  I am very pleased to be represented by such an upstanding representative, and hope that together, much good will come of it.
However, I need to come to the main reason as to why I am writing to you.  Recently, Glenn Thibeault has re-introduced two Private member’s Bills, Bill C-219 and C-218, that has me concerned on many levels.  Before I get started, I do need to disclose to you that I am a person diagnosed with Asperger Syndrome, and consider myself an Autistic individual, as Autism is a part of who I am, how I think and interact with the world.   It is because of my identity as such that has me especially interested in these legislations. 
Bill C-219 is the National Strategy for Autism Spectrum Disorders.  To be honest, I am not sure what to make of it, since it seems a little vague.  I am worried about the potential misuse of a national surveillance program, especially with the ongoing research into pre-natal testing for Autism.  However, I am also hopeful for “the provincial government in providing education, professional training and other required supports for Canadians with Autism Spectrum Disorders”.  I do hope that this includes adults and students, as a university student myself finding it difficult to both work and attend courses on social assistance. 
What really has me and other Autistics worried is Bill C-218, the amendment to the Canada Health Act to include Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) as services “medically necessary or required… for persons suffering from Autism Spectrum Disorders”.  In fact, given the language and potential negative consequences of the Bill, I strongly oppose it. 
As an Autistic individual, I can tell you that I do not suffer from Autism.  Both my-self and many other Autistic people will tell you that what we suffer from is a society and environment that is inaccessible, and unable to understand and accommodate our needs so that we can flourish as active and contributing members of society.  Part of this is the fact that often Autistic individuals are not included in local, provincial and national discussions about Autism, thus silencing our voices in matters that effect us and future generations.  In correction of this error, I hope that you will work with us to make sure that Autistic voices are being heard within our communities, with our social services and organizations, and in our government. 
The second part of language that I object to is the term “medically necessary”.  I understand that the term is a legislative term, apparently used to ensure “that such services cannot be withheld by any province or territory” (Glenn Thibeault, email Wed June 29, 2011 at 11:59am to myself).  However, it has the implications that Autism is a disease that is contagious and/or full of suffering and misery.  This re-enforces harmful negative stigma and stereotypes about Autism, and can hinder Autistics from gaining meaningful education, employment and involvement within our own communities.  This also gives a false impression as to the reality of our existence and our lives, making us out to be living lives full of tragedy, suffering and misery.  In some cases, because we are “diseased” and because we are disabled, we are seen as sub-human, and this justifies abuse, discrimination and even murder of Autistic people, usually in the case of relieving us of our “suffering” or else in plain cruelty towards perceived inferior individuals.  Thus, such language as “suffering” and “medically necessary” poses negative consequences on the lives of Autistic individuals and creates barriers for us to be a part of society and our country, if not outright threatening our lives.
And then there is the matter of ABA and IBI in terms of the legislation and in of itself. Glenn has tried to assure me that no one will be forced into ABA and IBI treatment, but both are early intervention treatments that focus on children, as young as possible.  This means that recipients of ABA/IBI are not always given a choice, or even an informed choice, about whether they receive treatment.  In the cases where they do object to the treatment, it is often taken as more proof that the child requires treatment.  This leads to a situation where the child’s wants are not being met, in favour for the wants and perhaps ease of the parents, and even for the benefit of ABA/IBI providers. 
There is a large community of Autistic individuals who object to ABA/IBI, because of how it traditionally treats Autistics, its philosophy and methods, and the possible failure for it to equip Autistics for life in the long-term. 
Applied Behavioural Analysis and Intensive Behavioural Intervention is often toted as an effective treatment for Autistic children, usually citing studies where treatment has been found to successfully render children “indistinguishable from their peers”, which is the whole aim of ABA/IBI.  However, such treatments suppress the natural coping strategies and communication styles of Autistic people, leaving them unable to cope with everyday stresses and situations.  Individuals then experience a melt-down when entering adult-hood and are unable to cope with being independent, a valued ability in our society.  This, combined with some of the dog-obedience-school like training of ABA/IBI treatment, leaves Autistic individuals completely dependent on caregivers.  It should also be noted that this leaves them vulnerable to various abuses at the hands of caregivers and strangers alike, including potential sexual predators.  It is noted that disabled people, men and women, are more likely to be sexually assaulted than non-disabled people.
There is also the issue of quality of life of a child undergoing ABA/IBI treatment.  Most treatments call for up to 40 hours a week of sessions, on top of a child’s regular schooling and possible other therapies such as occupational, physical and speech therapy (depending on the needs of the child).  Given the other stresses in a child’s daily life, 40 hours is a lot of work for a child.  It is comparable to a 40 hour job for an adult, and leaves very little time for a child to engage in other developmental activities such as one’s regular routines to de-stress, plus a child’s natural desire to play and simply be a kid.  Myself and other Autistic individuals consider this amount of time in ABA/IBI to be child labour, and is an inexcusable stress on a child’s life.
A counter-argument to the one I just presented is that ABA/IBI is worth it if it is effective in diminishing disabling aspects of Autism in the long-term.  First, I would question what would be considered disabling aspects of Autism, and whether it is really something that is disabling a person, or whether it is society’s inaccessibility that is really the disabling aspect.  In such a case, such arguments is then victim-blaming the disabled instead of working towards becoming more accessible and accepting of human diversity. 
Second, I question the actual sources of their success rates.  As noted by researchers such as Michelle Dawson, a lot of the studies concerning Autism do not meet quality standards required by other studies.  Plus data from such studies do not always meet the conclusions made about it and represent false impressions as to the long-term effects of treatments for Autism, including ABA/IBI.  I highly recommend Michelle Dawson’s work, as an Autistic individual herself with highly informative research at the University of Montreal, plus her experiences at the Supreme Court.  Her work can be accessed at her website No Autistics Allowed.
Looking into the studies, it can be seen that when comparing treatments for Autism, ABA/IBI scores no higher than any other treatment.  Even then, the treatments are not entirely clear as to the efficiency and success in the long-term, compared to no treatment at all.  There are even some suggestions that treatments for some Autistics are unnecessary, due to the fact that Autism is a developmental disorder, meaning that development may progress in an unique manner, but does occur.  It should be noted that this does not mean that Autistics do not require accommodations and supports in the classroom as disabled students, but rather that treatments to improve developmental milestones may be misguided. 
There is one study that does highly suggest success for ABA/IBI treatment, and this is often the study that all other studies reference or depend on for proof of success.  However, that study was done when ABA was developed, and uses the original methods designed by Lovaas in the late 1950s.  Studies to replicate the results are impossible, since the original Lovaas method included aversives such as electric shock, physical restraint, yelling and hitting, purpose exposure to unpleasant physical stimuli such as loud noises, smells, and various forms of pain. These techniques were used on children and teenagers in treatment for Autism (in most cases, ironically, to reduce self-injury behaviour) and homosexuality.  Since such techniques are now illegal, current studies are unable to replicate results, and thus prove that ABA/IBI is in any way effective or superior to other treatments. 
I will repeat, the goal of such treatments is to render children to be as indistinguishable from their peers as possible by suppressing Autistic behaviours, coping strategies and interests.  Given the long-term negative effects of such treatment, many Autistic people oppose ABA/IBI due to their own experiences upon reaching adulthood.  Also given the many advances in art and technology that Autistic people have provided, I wonder whether such disabling treatments are necessary, especially if our society is striving to become more accessible, accepting and inclusive of disabled persons. 
If our society is truly striving to be more inclusive of disabled persons, including Autistic individuals, then such legislation as Bill C-218 is a grave error.  While attempting to improve the lives of Autistic people, it servers to re-enforce negative stigma and stereotypes that creates barriers to accessibility and inclusion, if not outright threatening our lives.  I think that the Autistic people in Canada would be better served if we were included in discussions and conversations that ultimately concern us in our communities and on a national scale.  There are many alternatives to Bill C-218 that would benefit Autistics more than this very flawed and limited source to a particular treatment. 
Instead of treatments such as ABA/IBI, which are extremely costly with questionable benefits, Canadian Autistics would be better served with more teachers educated in teaching methods for an inclusive classroom, access to Alternative Augmentative Communication devices and assistive technology, education in inclusive classrooms that are designed to assist students to learning everyday living skills such as cooking and nutrition.  Post-secondary students and adults could benefit from workshops to learn living skills, support groups and more opportunities to funding for post-secondary education, professional training and employment that suits their abilities and meeting their needs.  There is a lack of supports for Autistic women in particular, in support groups, self-advocacy workshops and in women’s shelters.  Often Autistic women do not know whether shelters can support them, and will remain in abusive situations. 
This is just a brief list, limited in that it is only me thinking of alternatives.  But if there were more Autistic persons involved, I am sure that a more complete list of ways that Autistics can be better served by our government will be created.  I am proud to be Canadian, but I think that Canada can do better, and that Autistics deserve better than legislation such as Bill C-218.  To us, Bill C-218 does not properly serve our needs, and I hope that you will part of including Autistic Canadians to create an accessible and inclusive Canada, and help us to oppose this bill. 
Thank you for your time,
Corina Lynn Becker

Here’s hoping for a good response!

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10 Responses to "Canadian Autism Bills Pt 3: Open Letter to Ted Hsu"

Dear Ms Becker you are obviously a highly intelligent, literate and high functioning member of the Autism Spectrum. Many such as my son with Autistic Disorder and profound developmental delays do not share all your blessings. It is unfortunate that you feel the need to prevent people like my son who do in fact suffer from their autistic disorder from obtaining treatment. Harold DohertyFredericton NB

Dear Mr. Doherty, Even should ABA/IBI prove to be in any way beneficial in the long run for any individual, it is still not acceptable to encourage language that could ultimately threaten people's lives. While you may consider your son to be "suffering" from disabilities (which by the way, I must wonder, is he disabled from his impairments, or from the way in which society has built the environment to exclude him?), it is questionable whether he sees himself in that way. However, I would not project my own feelings onto his situation, as I hope that you would not project your own feelings onto him as well. Either way, your son deserves better than this Bill.Corina Becker

Excellent.I sent an email to my MP as well. I would have added "autistic individuals and their parents" instead of just autistic individuals but otherwise an excellent letter.My youngest is officially in the augmentative communication service here – no more waitlist and a lot faster than I expected – and I just talked to the SLP today about using ABA/IBI in their programming since both come from the same oversight agency and she tells me "NO". From her response I know I and my son are not the only ones to have had a negative experience with them.As for obtaining "treatment" per Harold. Treatment is a frightening concept. It doesn't educate, it doesn't teach communication skills, it doesn't believe in occupational therapy nor enjoyment of life. Once we pulled ABA and started treating our son with respect and an assumption of competance and an ability to learn instead of being "trained"…. we have proven that children can learn amazing things when treated with compassion and as children. Ironically, in a public setting… not behind closed doors and alone.

"Sees himself in this way". My son's teacher talks about a boy who was in her classroom a few years ago. It was "assumed" that all she could do was babysit him being severely physically and mentally handicapped.This child sucked his fingers to the point of causing harm. Everyone told her she couldn't stop it nor would she ever be able to communicate with him. She didn't manage to stop it entirely but instead the child would hold up his other hand to hide the figures in his mouth.She proved that he could learn. She proved that she could communicate with him. She proved that he understood her.As she said last Wed "if you assume the child doesn't understand and talk to them in that manner…. will they not always believe they can't".Never "assume" a child that appears not to be listening isn't….. You may be surprised to find out they are and you've missed a huge opportunity to teach that child. Not "train"… teach.My 9.5yr old is severely autistic. Yes, it is a disability. Yes, I would cure him if I could… Did his mild bro. But we educate. We teach the 3R's. We believe as Mercedes Lackey has written "children need to live, laugh and play" and even those with autism. People need to be part of society even if they always require supports. I don't have to like autism, but I never blame autism. It is what it is, and we live with it, not for it. Autism doesn't stop us (and our youngest son) from going to see Cirque du Soliel at the beginning of June or to Great Wolf Lodge last Oct and hopefully next Oct. We go, we have fun, we adapt…. we enjoy life.Your previous email to Glen mentions a request for proof. I too have never seen proof ABA works. But I have seen proof in my own house that education works. That sitting and reading a book together teaches much more than flashcards with words on them that are flipped in front of someone until they memorize them.That is not learning. That is not comprehension. That's training and people are not pets.Any guesses how big a soapbox of mine this is 🙂

Have you ever watched an IBI session? My daughter was in this program for 1.5 (almost 2) years and I assure you it was not a 40 hour week, torture session administered by abusive, faceless nurses. For starters, because it's so expensive most kids only get a max of 20 hours a week (which we combined with only 10 hours of school) and in our case most of the "therapy" was done in our own living room under our supervision. The majority of it was play based and my daughter appeared to really enjoy it! If she was having a rough day, they kept expectations low or stopped altogether. Through this program we, as parents, learned some great skills to help our daughter learn in a way that's comfortable to her… our daughter is clearly a happier child since we did this program.Having said that, IBI and ABA are not the "end all, be all" either and if parents are looking at this as a way to "fix" their kids, they are strongly misguided. Every child has their own learning style and any good educational approach needs room for flexibility. Currently, a more natural based learning approach with some behavioral strategies works well for our daughter- but IBI was a good start for her and us.I respect your opinion but you can't speak for all autistics. Maybe you "do not suffer from autism" but some do, and the only autistics that can speak for themselves are the verbal ones. Trainspotter

@trainspotter, have I actually said that's what sessions are today? No, I have said that the only studies conducted that "proved" ABA/IBI worked were early studies that used such techniques. I also said that ABA/IBI traditionally recommend 40 hours a week, which is the equivalent to a full time job for an adult. The 20 hours a week, by the way, is the equivalent to a part time job for an adult. And even if it's fun, learning is WORK!!!!I've never claimed that it's a bad learning style; certainly it could be used as one, but it's being presented as a treatment. And that's the problem. Any time you medicalize disability and use words like "suffer", is a problem.p.s. I've never claimed to speak for all autistics, but I happen to know a lot who agree with me. And guess what? Not all of them are verbal. It's funny that you think that just because I can type, I can speak. There's a lot of autistics online who have weak to no verbal skills, and they agree with me. Just because someone can't speak, doesn't mean they don't communicate another way. And as always, Nothing About Us, Without Us.

Grrrrrr…..(Melody your cousin is one of my friends and assistants…and since you guys hadn't talked in a long time she decided to show me your blog one day). The reason why I put Grrr is that because reading that the only people that can communicate are verbal people. I have a friend that would have a big big problem with that and so do I. Because I believe that anybody can speak for themselves. That even if they don't understand that you can still talk to them normally. They even say to talk to babies like you would a person even if they don't understand, they'll learn. I'm not saying that non verbal people are babies but that it is a good example of that we can never know the extent of what somebody knows inside. Your other post there about that you don't suffer from autism. I have cerebral palsy and people think that I suffer from it. I think I have a pretty good life! I have fun and I go to work and have friends. People think that I can't work because I have a disability and both you and I work. Working can be activism (like you!) and it can be going to a job where you do something for someone else all day, it can lots of things. I really think this blog is so good that it could be your job!:) In a way it is. Melody says 'hi' and we love your blog! We'll come back:)

Hi Janine! Melody reads here? Awesome. I honestly had no idea she was aware of this blog.And thank you so much, I'm glad both of you like the blog. Say hi to Mel for me too!!!

I think that it is about time something is being done federally to help those with ASD to get much needed therapies for their disability and YES I do consider it a disability. Especially since we cannot get ABA in Nova Scotia. MY SON has classic autism and cannot communicate he is nonverbal and at the point where he is getting so frustrated with not being able to get his point across to others that he has resorted to hitting himself in the head (he is only 5). I can only imagine how he will be in a couple of years when he is bigger and stronger. If he was able to speak and go to University that would be great but not all Autism is Asperger's. ABA therapy is what is needed for those who have nothing!

Hi Anonymous person who apparently doesn't feel like giving me a name to address, and thus hides behind anonymity!!! I never said the federal government should not be assisting people with disabilities. Never said that Autism isn't. The problem is how disabilities are defined. See, I use the social model of disability, in which it is society which creates disability by creating obstacles, barriers and limitations for people with impairments or different ways of doing things. For example, you say your son is nonverbal and thus unable to communicate. But why is speaking considered the only form or most highly regarded form of communication? There are plenty of perfectly valid methods of communication available. Sign language, for instance. The Deaf community has made huge efforts over the years to make sign language be recognized as an official language. Should it become mainstreamed, and things like Deaf Emerge, such as French Emerge, exist, then nonverbal people have a better outcome in communication. Speaking is NOT communication. But you've said it yourself: your son gets frustrated from not being able to communicate. Maybe instead of trying to get him to communicate in the way that suits YOU best, you should look for the ways in which HE communicates best. Moving on, as I have pointed out numerous times already on this blog, it is still unclear as to whether ABA is in any way efficient in the long run to improving the lives of autistic people. Therefore, it is scientifically unsound to say that "ABA therapy is what is needed" or is "medically necessary", when science has not proved that in the slightest. Ergo, it is not even clear that it would help your son, even if it were easily available to you.I would rather the federal government would fund things that are PROVEN to be beneficial to Canadian Autistic population. P.S. I go to university. Several of my classmates are deaf and communicate through sign language. They don't speak, but are certainly able to go to university. Communicate methods are NOT indicators as to ability or intelligence. It is quite ignorant of you to suggest otherwise. Heck, disability in general is not an indicator to ability. My current professor, for example, is BLIND!!!!!

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  • None
  • Corina Becker: Hi Anonymous person who apparently doesn't feel like giving me a name to address, and thus hides behind anonymity!!! I never said the federal gov
  • Anonymous: I think that it is about time something is being done federally to help those with ASD to get much needed therapies for their disability and YES I do
  • Corina Becker: Hi Janine! Melody reads here? Awesome. I honestly had no idea she was aware of this blog.And thank you so much, I'm glad both of you like the bl

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