Canadian Autism Bills Pt 2: Email Exchange with Glenn Thibeault

As you might have known from my previous post, there are two Private member bills being re-introduced that concern Autism, and I have been attempting to have a discussion with Glenn Thibeault, the MP who is doing the re-introduction.  Alas, his replies have been.... less than assuring....

Here's the discussion, so far:


June 24
To Glenn

Hi, I would like to have more information on the autism spectrum disorder bills, especially on what the national strategy would entail and the reasoning for ABA/IBI, especially when there is very little good evidence that demonstrates that it is effective and beneficial for individuals with autism spectrum disorder.  In fact, many adults with ASD strongly disagree with ABA methods and traditional philosophy.  It would be beneficial for all people, children, teens and adults, if autistic people are included in the creation of legislation that ultimately affect them.

~Corina Becker

 To Corina

Corina,

I can assure you that I spent a great deal of time liaising with autism groups before bringing these bills forward, and I have personal experience working with individuals with autism as prior to being elected to Parliament, I graduated from the Developmental Service Workers program at Cambrian College in Sudbury and I worked as a behavioural consultation in Vancouver.

Neither of these bills would force individuals to use ABA/IBI; they would simply ensure that no individual who wished to have access to the treatments could be refused by their provincial health service.

The two bills can be found online at:
1)      http://www.parl.gc.ca/HousePublications/Publication.aspx?Language=E&Mode=1&DocId=5091810

2)      http://www.parl.gc.ca/HousePublications/Publication.aspx?Language=E&Mode=1&DocId=5092022

All the best,

Glenn

June 28

To Glenn

Hello Glenn, it's very nice of you to provide links to the Bills. 

I am aware of your time as manager of Residential Programs for Youth and Adults with Disabilities.  It is conceivable that you had contact with some Autistic individuals there.  However, there is quite a spectrum of individuals and autism groups.  It would be beneficial to know which autism groups you have liaised with, as to be fully aware of your specific experiences.   This is especially important given the rather offensive wording in Bill C-218. 

Far from assuring me, you have deepened my concerns, and have not answered my questions.  So I will ask again, as an Autistic individual and voting citizen.  Upon which scientific studies and knowledge did you base your decision to make ABA/IBI as "medically necessary", despite the numerous scientific studies that prove it to be no more effective than other teaching methods?  Why did you single out ABA/IBI specifically, even though the majority of the Autistic community is strongly opposed to its methods and philosophy? 

Why is it that you are not paying attention to the vast amount of Autistic citizens who oppose this bill, and persist to pass C-218? Especially when your own National Strategy for Autism Spectrum Disorders renders C-218 to be useless should ABA/IBI be an appropriate and safe method of teaching an Autistic individual? 

I would appreciate more specific answers.

~Corina

June 29

To Corina

Corina,

Thank you for your continued correspondence. I have worked with a number of autism groups – both provincial and national - over the past three years while I have been in Parliament regarding these bills. ‘Medically necessary’ is a legislative term used in the Canada Health Act to mean that such services cannot be withheld by any province or territory. It has no influence on whether an individual should or should not have any specific treatment. While I understand your criticism of ABA and IBA, Bill C-218 would simply assure that individuals who wish to received these treatments have equal access to them, and this was an issue that numerous groups brought to my attention and asked for legislative chances to rectify.

All the best,

Glenn

July 1

To Glenn

Dear Glenn,
You have still failed to answer my questions sufficiently enough to address my concerns and fears. As such, I feel as though my voice as a voting Canadian citizen is not being heard. 
I ask again, which autism organizations in specific have you worked with? 
This is so that I can have a better understanding as to the scope of your autism experience.  Some Autism organizations, for example, do not represent my concerns and needs as an Autistic adult. 

Also, which scientific studies do you base your decisions that ABA/IBI is deemed to be more effective than other teaching methods to warrant it being singled out for Bill C-218? 
This is despite the increasingly large amount of data that suggests that it is no more effective than other means of teaching, and various accounts that it might actually be harmful to individuals, as it suppresses their natural coping mechanisms and renders them unable to adjust to the realities of adulthood and independence.  Which then leads them to be vulnerable to being dependent on service providers, some of which take advantage of their state.  

I highly recommend reading the work of Michelle Dawson, an Autistic researcher at the University of Montreal who has covered numerous studies on Autism and has been involved with cases at the Supreme Court about ABA/IBI.  You can see her work at her website No Autistics Allowed

Plus, ABA/IBI are early intervention therapies; they are directed to young children who are often not given a choice about whether or not they receive these treatments.  When they do try to object, the manner in which they do so are often taken as more reasoning on why the children need treatment. 

Furthermore, why do you use the term "suffering"  in Bill C-218?  This is problematic because I can tell you that numerous Autistic individuals, myself included, do not suffer from Autism; we suffer from society and autism organizations not being able to meet our needs, and misrepresenting us in our communities and in our governments. 

Also, in terms of " medically necessary", while a legislative term, it suggests to the general public that Autism is a disease.  While medically, it suits the definition, Autism is not a contagious disease, which is implied by the "medically necessary"  and "suffering" terms.  It may not be your intention, but the connotations of these words matter a lot.  The connotations of these words support the negative stigma and stereotypes about Autistic individuals, that our existence is a tragedy full of misery and suffering.  At best, these stereotypes make it difficult for us to gain meaningful education, employment and interaction within our communities; at worse, these stereotypes justify the discrimination, abuse and even murders of Autistic individuals, as we are seen as sub-human and our lives so full of suffering that it is a mercy to put us out of our misery. 

With these connotations in mind, I ask that you rethink the terms that you use to create legislation, and not degrade the lives and experiences of Autistic people.   I would also ask that you be more specific with your answers, as to reassure me. 

Thank you for your continued correspondence,

~ Corina

Glenn hasn't responded to me yet.  It could be the long weekend that has him busy, but I'm not entirely sure.  I wonder whether I will get a reply, or rather, having patted me on the head, he has dismissed the contents of my emails entirely.  Time will only tell.