Autism in Canada: Our Brave New World?
I am disturbed every time I pick up a copy of an autism society magazine and read the comments by our "leading" autism researchers. I've just got to be honest here. I want to work with others in order that we create better opportunities and a world of respect and acceptance for autistic people, and I know this post may seem undiplomatic. But it's got to be said. We have to up the ante in our Canadian efforts to understand autism.
As the founder of The Autism Acceptance Project, I receive emails from parents who find The Toronto District School Board, unaccepting -- not accommodating autistic children on playgrounds and not providing family-appointed shadows (right now, an EA is ascribed to a child). Shadows are simple solutions -- if the family feels comfortable and has a good personal rapport. Shadows can be a child's best advocate. They can ensure our children's safety from abuse where many of our children are non verbal. Many of our kids are academically strong and should be in safe schools -- this does not mean segregated ones. It means schools that appreciate the special need of the child and that value diversity and inclusion. What we have is a drive to conformity -- as school teachers cannot handle the numbers of students in the classroom, or may lack an enthusiasm for teaching under crowded conditions.
And I don't hear anyone fighting for our kids. I hear a lot about ABA -- a goal to make the child conform and dangerously perceived by politicians to be a quick fix to make children normal so they don't have to support or pay for them later. Yet, people with disabilities can and do contribute to society and sometimes needs support well into adulthood. These issues never get addressed in the same fashion.
I hear about finding the location of the gene(s) for autism and preventing it. What is disturbing is this trend to ignore the culture of autistic people, and a failure to recognize the real issues facing our disabled population and how they feel they should be provided access and what would be helpful to them -- as they see it.
I am reading Autism Society of Ontario's Spring 2007 edition of Autism Matters. There are too few interviews of autistic people and how they feel about the policies being made by non autistic people. The magazine also contains an article titled "Unraveling the Mystery" on the research of Peter Szatmari and Stephen Scherer. Now, Autism Society of Ontario wants to be a "non partisan organization." I was asked to speak at their recent "acceptance" conference because of that position. Yet as I consider the politics of autism and this so-called non partisanship, there is something very missing -- the largesse of opinion and articles by autistic people, the absence of which makes the magazine, partisan. I am asking ASO and like organizations to raise these issues, as they are the prevailing issues in autism today. It should defend the rights of autistic people first and posit those issues in a dignified way. While we as parents have a voice, it must stand alongside the population to which our children belong. Not everyone will agree, but we should never discount the opinions of autistic people just because it doesn't serve our cause, feels uncomfortable or because someone tells us we've got it wrong. Rather, we might be asking ourselves the question, what might we learn and what can we do better for our children by including autistic people now.
Also missing is the dialogue about the research and how autistic people interpret it. Here is a quote from the article I found particularly "partisan" and disturbing:
"Glutamate increases neuronal activity and plays an important role in wiring up the brain during early development. It provides further proof that autism is caused by faulty wiring in the brain, and pinpoints this pivotal neurotransmitter system as a prime suspect."
"Prime suspect?" Are genes criminal? Proof of "faulty wiring?" Have our Canadian scientists read this article? More importantly, if they have, do they even care? Will my speech at the ASO be a drop in the pond of prevailing ignorance and drowned out by a non autistic faction who does not want to address these issues at all? Or can we work together to merge help with respect -- to encourage autistic people to participate without the threat of "being treated?" or being considered too "articulate" via computer or otherwise to "be autistic?" Can we provide safe environments for autistic people to participate without being chastised (many of them today are unfortunately attacked by some parents).
Let's take a look at the ultimate goal of research as found in the CAIRN newsletter:
"Preliminary findings have zeroed in on Chromosome 7 as one hot spot for continued research. But while results are promising, there remains much work to be done. Researchers hope eventually to enable clinicians to biologically diagnose autism, allowing children to be diagnosed earlier than ever and leading to more effective treatments and better outcomes for them and their families. Knowing what causes autism may even allow us, one day, to prevent it."
Without paying any attention whatsoever to how autistic people feel about "being prevented," instead of helping and respecting them, do we march towards our Brave New World? I risk writing anything because to speak about this is like taking away a right and a freedom to choose. While I can't say I want to stop "progress" (right, like I even could), I want to BEGIN discussions that include autistic people here in my backyard and I hope others will do the same. I want to be heard as one of the many parents who actually wants to see my child respected and not stigmatized by faulty rhetoric and biased science. I want Adam to feel at home anywhere and possibly relate to others who have similar experiences.
Consider the startling difference from Szatmari's team in approaching genetics research for the purposes of understanding autism by Dr. Laurent Mottron et al:
"There are no available convincing data that autism with vs. without overt peaks of ability, with vs. without overt speech or overall autism vs. Asperger Syndrome, differs at a genetic level. Even language abilities cannot be used to distinguish autism from Asperger Syndrome, as written language experts are as representative of autism as oral language experts are representative of Aspergers."
Perhaps, having read the latter, we can consider what science can do in helping autistic people contribute to society as autistic people. Can you help with sensory issues and anxiety whilst keeping personhood intact or does genetics research seek to throw the baby out with the bathwater?
The Autism Acceptance Project hears from more parents every day who are disgruntled with this. This is not about preventing, it is about celebrating and accommodating. It is not about determining what is "faulty" any more than I can say that being freckled is faulty. I hope to make it a little more obvious of the subjectivity of science -- that it can exist.
If a researcher tells me "I've seen families who have been beaten black and blue by their children," (a quote by Wendy Roberts in the National Post article "Redefining Autism") to justify the prevention of autistic people from being born, er, okay...genetic research, I want to visit that family to see what's really happening there. Many times, parents need a lot of support to understand their children and to live with what is instead of expecting what will never be. By doing so, we can appreciate what is possible and what is achieved. Many times, I've seen single parents with autistic children become very frustrated because there is already a lot of stress and the child not only feels that stress, and enacts it, but may also be under pressure to do things that they cannot instead of working with strengths to achieve what can be. The latter isn't about becoming normal, it is about becoming the best we can become. And it's about our attitude.
Ask any member of the disabled community and I think they'd agree. It's not about becoming like someone else, it's about being yourself without others telling you what you should be.
"Disability inspiration is a form of propaganda that glosses over oppression while simultaneously reassuring normals about the superiority of their ways." John B. Kelly found in Amanda Bagg's bag of quotes. Let us also be careful of sentimentalizing disability.
As the founder of The Autism Acceptance Project, I receive emails from parents who find The Toronto District School Board, unaccepting -- not accommodating autistic children on playgrounds and not providing family-appointed shadows (right now, an EA is ascribed to a child). Shadows are simple solutions -- if the family feels comfortable and has a good personal rapport. Shadows can be a child's best advocate. They can ensure our children's safety from abuse where many of our children are non verbal. Many of our kids are academically strong and should be in safe schools -- this does not mean segregated ones. It means schools that appreciate the special need of the child and that value diversity and inclusion. What we have is a drive to conformity -- as school teachers cannot handle the numbers of students in the classroom, or may lack an enthusiasm for teaching under crowded conditions.
And I don't hear anyone fighting for our kids. I hear a lot about ABA -- a goal to make the child conform and dangerously perceived by politicians to be a quick fix to make children normal so they don't have to support or pay for them later. Yet, people with disabilities can and do contribute to society and sometimes needs support well into adulthood. These issues never get addressed in the same fashion.
I hear about finding the location of the gene(s) for autism and preventing it. What is disturbing is this trend to ignore the culture of autistic people, and a failure to recognize the real issues facing our disabled population and how they feel they should be provided access and what would be helpful to them -- as they see it.
I am reading Autism Society of Ontario's Spring 2007 edition of Autism Matters. There are too few interviews of autistic people and how they feel about the policies being made by non autistic people. The magazine also contains an article titled "Unraveling the Mystery" on the research of Peter Szatmari and Stephen Scherer. Now, Autism Society of Ontario wants to be a "non partisan organization." I was asked to speak at their recent "acceptance" conference because of that position. Yet as I consider the politics of autism and this so-called non partisanship, there is something very missing -- the largesse of opinion and articles by autistic people, the absence of which makes the magazine, partisan. I am asking ASO and like organizations to raise these issues, as they are the prevailing issues in autism today. It should defend the rights of autistic people first and posit those issues in a dignified way. While we as parents have a voice, it must stand alongside the population to which our children belong. Not everyone will agree, but we should never discount the opinions of autistic people just because it doesn't serve our cause, feels uncomfortable or because someone tells us we've got it wrong. Rather, we might be asking ourselves the question, what might we learn and what can we do better for our children by including autistic people now.
Also missing is the dialogue about the research and how autistic people interpret it. Here is a quote from the article I found particularly "partisan" and disturbing:
"Glutamate increases neuronal activity and plays an important role in wiring up the brain during early development. It provides further proof that autism is caused by faulty wiring in the brain, and pinpoints this pivotal neurotransmitter system as a prime suspect."
"Prime suspect?" Are genes criminal? Proof of "faulty wiring?" Have our Canadian scientists read this article? More importantly, if they have, do they even care? Will my speech at the ASO be a drop in the pond of prevailing ignorance and drowned out by a non autistic faction who does not want to address these issues at all? Or can we work together to merge help with respect -- to encourage autistic people to participate without the threat of "being treated?" or being considered too "articulate" via computer or otherwise to "be autistic?" Can we provide safe environments for autistic people to participate without being chastised (many of them today are unfortunately attacked by some parents).
Let's take a look at the ultimate goal of research as found in the CAIRN newsletter:
"Preliminary findings have zeroed in on Chromosome 7 as one hot spot for continued research. But while results are promising, there remains much work to be done. Researchers hope eventually to enable clinicians to biologically diagnose autism, allowing children to be diagnosed earlier than ever and leading to more effective treatments and better outcomes for them and their families. Knowing what causes autism may even allow us, one day, to prevent it."
Without paying any attention whatsoever to how autistic people feel about "being prevented," instead of helping and respecting them, do we march towards our Brave New World? I risk writing anything because to speak about this is like taking away a right and a freedom to choose. While I can't say I want to stop "progress" (right, like I even could), I want to BEGIN discussions that include autistic people here in my backyard and I hope others will do the same. I want to be heard as one of the many parents who actually wants to see my child respected and not stigmatized by faulty rhetoric and biased science. I want Adam to feel at home anywhere and possibly relate to others who have similar experiences.
Consider the startling difference from Szatmari's team in approaching genetics research for the purposes of understanding autism by Dr. Laurent Mottron et al:
"There are no available convincing data that autism with vs. without overt peaks of ability, with vs. without overt speech or overall autism vs. Asperger Syndrome, differs at a genetic level. Even language abilities cannot be used to distinguish autism from Asperger Syndrome, as written language experts are as representative of autism as oral language experts are representative of Aspergers."
Perhaps, having read the latter, we can consider what science can do in helping autistic people contribute to society as autistic people. Can you help with sensory issues and anxiety whilst keeping personhood intact or does genetics research seek to throw the baby out with the bathwater?
The Autism Acceptance Project hears from more parents every day who are disgruntled with this. This is not about preventing, it is about celebrating and accommodating. It is not about determining what is "faulty" any more than I can say that being freckled is faulty. I hope to make it a little more obvious of the subjectivity of science -- that it can exist.
If a researcher tells me "I've seen families who have been beaten black and blue by their children," (a quote by Wendy Roberts in the National Post article "Redefining Autism") to justify the prevention of autistic people from being born, er, okay...genetic research, I want to visit that family to see what's really happening there. Many times, parents need a lot of support to understand their children and to live with what is instead of expecting what will never be. By doing so, we can appreciate what is possible and what is achieved. Many times, I've seen single parents with autistic children become very frustrated because there is already a lot of stress and the child not only feels that stress, and enacts it, but may also be under pressure to do things that they cannot instead of working with strengths to achieve what can be. The latter isn't about becoming normal, it is about becoming the best we can become. And it's about our attitude.
Ask any member of the disabled community and I think they'd agree. It's not about becoming like someone else, it's about being yourself without others telling you what you should be.
"Disability inspiration is a form of propaganda that glosses over oppression while simultaneously reassuring normals about the superiority of their ways." John B. Kelly found in Amanda Bagg's bag of quotes. Let us also be careful of sentimentalizing disability.
10 Comments:
I remember a prominent politician who began his career by setting out to achieve one goal. He told me he could not achieve all that was asked of him. In this manner he built upon his success.
It would be wonderful to have the autistic community come together to accomplish one major goal for the children. How about shadows in schools? It is a beginning.
Your caricatures of parents seeking to help their own children by evidence based interventions are bordering on the ridiculous. Your bitterness is becoming more and more pronounced with every comment. The "Joy" of autism is a hard sell to parents who know better and haven't abdicated their responsibility to help their own children to internet strangers.
Perhaps you see what I am up against whenever I attend a conference where the speakers are a preponderance of scientists.
I have to challenge not only what they are saying and why they are saying it, but there basic assumptions about autism too.
I don't think those who criticise my style on the blog are really aware of what I do in the real world to engage with and influence research.
It is a long long struggle and one which does not show instant results either, but it is important that I am there on the board of the NAS so far as the NAS has some influence or intention to influence the types of research to be carried out and to attempt to ensure that the NAS does not fall back into bad ways in terms of publicising the existence of autism to the world outside who consume all the usual garbage about it from sundry media.
Damn it, it is more effective that I am doing this as a recognised autistic person, as that perspective is different and indeed more critical if you(that is to say an autistic person) are the subject that is being discussed.
This takes more than blogging to achieve, it takes physical presence .
Larry, I do the same. I challenge scientists to their faces, but I don't shout at them unexpectedly from the audience. I wait until they ask for questions, or I talk to them afterwards.
It is important for scientists to see us and discuss things with us face to face, but emails to them are helpful, too, and a blog gets the message out to a vastly larger audience, so long as the blog gets more than 100 vists in total. I'm getting about 1100 a day recently, because of the Omnibus hearings. I got 1400 visits yesterday alone.
Estee
Need a little help here. Does Autism Ontario have a chapter in Ottawa? Is there a separate one for Aspergers?
My email is alyric@gmail.com
The joy of autism...what a novel concept! I actually googled those words and came across your blog when I needed it.
I've been of a mindset lately. When I think of selective abortion...we are recreating in the womb the beginning of a nightmare. ( First, they came for the Down-Syndrome fetus's, but I was not DS...this is a take-off of the prose about the Nazi's final solution that began with the handicapped, and we KNOW how that ended up.)
>>The latter isn't about becoming normal, it is about becoming the best we can become.<< 'nuff said.
I think the word "caricatures" used to describe people is best reserved to how autistic people are referred to by our ABA movement.
Larry,
Agreed it takes physical presence. I think that the fact that we blog also gets the word out and TAAProject is being invited out to more venues because of it.
It is a long road.
Rose, on your comment about first coming for the DS babies... here's a link to an essay along those lines. I read it about two years ago and reposted it on my site with the author's permission:
A Matter of Perspective
America isn't much better off on this front. I think there's a lot of one nation looking to the other and thinking how much greener it looks. Really, proper child care and protection is a universal issue. It doesn't seem like anyone's up-to-snuff.
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