Letters That Have Been Sent
My Own Letter (not exact text)
This letter was sent to MP Rob Anders via registered mail (Canada Post) on February 1, 2007. It was signed for on February 2, 2007, by Mario Dery.
I am writing in regards to BillC-304, which I understand is scheduled to be re-opened for debate in February.
While I support the development of a national strategy for the betterment of all individuals with disabilities in Canada, I cannot lend my support to this bill, and I hope that the contents of this letter will make my reasons clear.
First, I question whether it is appropriate to include an amendment to the Canada Health Act that is only applicable to Autism Spectrum Disorders when no other diagnosis, disorder, or condition is singled out in the Act.
Second, I find it disturbing that this bill specifically names Applied Behaviour Analysis (ABA) and Intensive Behavioural Intervention (IBI) as being (1) medically necessary; and (2) the only therapies covered by this Act. My reasons for this are as follows:
- ABA is supported by a study that only showed a 47% recovery rate, and many of the methods used in that study are no longer used in ABA programs today.
- If ABA is specified as being medically necessary by the Canada Health Act, then it must also become a regulated medical treatment. Is the government prepared to oversee this?
- There is more than one type of ABA in existence, and this amendment does not specify which types will be covered by the Canada Health Act.
Third, I take exception to the assumption that autistic people must naturally be suffering from their autism. I know several adults and have worked with many children who have diagnoses ranging from mild to severe, and none of these people were suffering specifically from their autism. Difficulties may arise from time to time due to the sensory processing differences that often come hand-in-hand with an autism diagnosis, but by and large, these individuals are suffering because of an intolerant society. It would be better to spend money on accurately educating the public about Autism Spectrum Disorders and giving the general public the tools and understanding they need in order to stop discriminating against people simply because they relate to the world differently.
I have been working with autistic children since August 1999. I began my career in the field of ABA, and over the years I have learned that ABA is not always useful for a child. In fact, it can be downright cruel. I now work full-time as a church secretary, but I continue to provide respite care on occasion for some of my past clients.
I am very proud to be considered among the ranks of the many non-autistic allies in the Canadian (and world-wide) autistic advocacy movement. I consider humanity to be richer for its diversity of brain structure and function.
The passage of this bill will affect the lives of all Canadians, young and old, regardless of their diagnosis. Not only might it negatively affect autistic children and adults of today, it will set a dangerous precedent that could contribute to future discrimination against people with disabilities, diagnoses, and disorders.
If you would like to speak with me further on this issue, please do not hesitate to phone(403.282.8198(h) or 403.519.9428(c)) or e-mail (janna@thehoskincentre.com).
Thank you for your time.
Sincerely,
Janna Hoskin
DJSR's Letter
This letter was sent to MP Myron Thompson via e-mail on February 15, 2007. I have been informed that it will also be sent via registered mail (Canada Post)..
Re: Bill C304 - National Strategy for the Treatment of Autism Act
Dear Mr. Thompson,
I hope this letter finds you well.
As a citizen living within your riding, and as an Advocate for the rights and ethical treatment of individuals on the autistic spectrum, I am writing to you to express my concerns about Bill C304 - The National Strategy for the Treatment of Autism Act.
The bill proposes to amend the Canada Health Act as shown below:
Autism Spectrum Disorders: 2) For the purposes of this Act, services that are medically necessary or required under this Act include Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) for persons suffering from Autism Spectrum Disorder.
As a student of Psychology at Athabasca University and as a fully independent and successful individual on the Autistic Spectrum, I strongly oppose this bill; particularly with regard to ABA and IBI cited as being the only medically necessary treatments for autism spectrum disorders.
My reasons for opposing these two treatments as the sole treatments for autism are as follows:
- Neither ABA nor IBI are forms of treatment that have a concrete and single way of being performed. There are a number of variations of these treatments that have a varied range of results, both positive and negative in the short and long term. Some are very attentive to the needs of the autistic child, while other border on abuse. Which types of ABA or IBI are being considered for this amendment? How will the government license and regulate therapists under this act?
- There are many other types of treatments of autism, such as Facilitated Communication, Occupational Therapy, Speech Therapy, Floor-Time, Son-Rise, etc. that are of the same varying benefit as ABA and IBI that have not been written into this bill. By limiting treatment of autistic spectrum disorders to ABA and IBI, there are thousands of autistic children who will be essentially denied options of treatments that might actually benefit them in the future if ABA and IBI do not.
- There are no concrete symptoms for autism spectrum disorders, hence why they are called spectrum disorders, and no set level of disability. Autism is a neurological disorder, which affects how a person perceives and reacts to internal and external stimulus. For some, it is quite severe; for other, like me, it is hardly noticeable. By limiting treatment options, not every person will have his or her specific needs met.
- Like treatments for any other medical condition, not everyone will respond favourably to one type of treatment, which is essentially being proposed in this bill. That would be like saying there is only one brand of medication to be used for heart disease across Canada.
- ABA and IBI do not generally address the medical reasons behind autistic behaviours, which are now being published in medical studies. They focus primarily on "correcting" behaviours through the use of reward and punishment; the same process used for training animals. Autistic children again would be denied the medical treatment they may actually need if these two treatments are listed as the only ones to be used.
- No legitimate research has been done into the long-term effects of ABA and IBI. There are many autistic adults around the world, myself included, who have found themselves suffering very negative long-term effects of ABA/IBI when pretending to be a normal child does not apply to adulthood and independent living. This in turn causes very heavy impacts on the health care system as generations of supposedly cured or helped autistic adults suffer both physical and nervous effects of this.
- Since autism will be singled out in this bill, autistic children today could face serious discrimination in the workplace in the future, even if ABA and IBI are successful. Many parents and agencies that make a lot of money on perpetuating the "autism epidemic" due to the increasing numbers of diagnoses. Anthropologists are now finding evidence that autistic people have likely been around for centuries. Since autism was first classified as a disorder by Dr. Leo Kanner in the 1940's, so much more has been learned about it. At one time, only those severely affected, (which is a very small percentage of us) were diagnosed. Now, researchers are seeing the wide spectrum that is autism. There is still much that is unknown about autism and much more that is being learned, such as the genetic components as well as the physiological components of it. There are a number of us who are high functioning and do just fine without special therapies or services. For myself, I am gainfully employed in the IT industry, attending University, am happily married and own a house in Airdrie. I would not want to be denied a job because I would be considered part of this "epidemic".
- No autistic individuals were consulted in the writing of this bill. Many of us have experienced these treatments first-hand with long-term results varying from good to severely damaging. One example is Michelle Dawson, a successful autistic scientist in Montreal who is currently researching the long-term effects of these treatments alongside many other non-autistic Canadian scientists. Her findings and personal experiences have been less than positive and she is actively advocating against this bill. My own experiences with ABA were also damaging and I would not want to see a child limited to this treatment if his or her experience will be as damaging as mine.
I realize that this bill has been introduced because many parents are being forced to pay exorbitant fees, ranging between $40,000.00 and $80,000.00 per year, because these treatments are not currently covered under the Canada Heath Act.
This is indeed unfortunate, and I agree that parents should not have to bear this kind of financial burden to attain needed services, not limited to ABA/IBI, when autism spectrum disorders are a medical condition and therefore should be given coverage the same as any other medical condition under the Canada Health Act.
However, I would urge you and your fellow MPs to reconsider passing this particular bill until further legitimate research into the short and long term effects of these, as well as other treatments, can be conducted and published.
Too many other equally legitimate options are excluded in Bill C304, which could affect the well being of autistic children and adults today and in the future. This could, as well, introduce the possibility of a larger burden on the Canadian Health Care System due to the ineffectiveness of this treatment on some people and the resulting exacerbation of an individuals disability.
The burden would also be extended to the tax-payer by way of the various committees and councils which would need to be formed by the government in order to establish a standard of practice, licensing and regulation for therapists.
As a citizen who has worked and paid taxes since the age of 13, I do not wish to see my tax dollars going towards a venture that has not fully addressed the various options in care that are available, that is not based on legitimate medical research, that has not considered the steps that would need to be taken by provincial and federal government officials to instate this act, nor the needs of autistic people or their families.
Instead, I strongly believe that our Governments focus should be turned towards treating autism spectrum disorders the same as any other medical condition: with coverage being provided to families for any form of beneficial treatment, and not limited only one or two treatment options.
I do hope that you will consider these concerns and bring them up when this bill is discussed. I look forward to hearing back from you as to what results from the discussions of Bill C304 and thank you most kindly for your time and consideration.
Sincerely,
DJSR