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!