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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Wednesday, November 22, 2006

 

More So-Called "Advocacy"

I went on a little R & R this past week to return to disturbing news reports. I came home to my happy little cherub, Adam, and every time I go away I am reminded of how big he is suddenly getting…how independent he wants to be, and is becoming, and yes, all without an intensive ABA program, but a diligent program of OT, SLP, JK, facilitated playgroups and one-to-one teaching and lots of visual schedules, books, choice boards and computer learning.

He still doesn’t say “mommy, mommy,” when I walked excitedly to his room. Instead, I asked him to sit in my lap as he watched TV after a long day of his own, as he got used to me being back, wrapping my arm around his tummy. A few minutes later, he could look at me and smile. I guess it was just before bedtime, there was commotion and he needed a few moments to take it all in.

I love Adam so much it brings tears to my eyes. I try to have compassion for all these parents who are fighting for their ABA services, when they say that their children give them “joy despite the autism.” I scratch my head at that one, because autism isn’t curable, and it is a part of their child. I also know that down here in the trenches, it's a little different than what the advocates say or what the media might compel you to believe. It really all is pretty gemischt down here.

It is perhaps for this reason I have compassion for real feelings of loss – myself watching intently an adorable little baby pointing and interacting with practically the entire air cabin this evening, with a bit of a pang in my stomach on the one hand for all the things I didn’t see in my infant Adam and curiousity for what this baby was doing in terms of "development." Then I think and wonder why these little pangs still come and I know – it is not the Adam that I didn’t have, it is the world that may never understand him – the parents and reporters who would have you believe that autism is a life-sentence without ABA, that autistic people will forever bite you and bang their heads without it. It is the fear I feel for Adam's future that he may always have to hide his label or else be sugjugated to quick judgement. How will my little guy, so tender at nearly five now, be able to handle it all? A mother's perogative to worry, I suppose, so long as the worry doesn't transfer or debilitate.

So, to some extent, I have compassion for how parents feel, and I consider that there is a hairline that keeps all of this apart. At least that’s what I would like to keep thinking.

But when I read parents with this special agenda to take all other services and special education away from our children EXCEPT ABA – who suggest that our children – my child – should be institutionalized without ABA treatment, then my tears or worry flow a little faster. I consider escaping to a small town, to homeschool – absolutely anything that might protect Adam’s dignity and ability as an autistic person – and of course, to protect him from the non-autistic people, parents and some media, who insist on speaking pejoratively about autistic people – their own children in fact – as non-sentient beings. I have compassion for parents who want to find the safest, most welcoming environments for their children, even if it happens to be an ABA school. But the world needs to know that many of us parents who have tried ABA programs, have been appalled at the poor quality of service, and lack of overall knowledge about autism in so-called “therapists,” and the arrogance and lack of understanding in some of the “psychologists” and other professionals. As I’ve said, I’m not against all behaviourism per se (although if you want to know the roots and perils of it in pedagogy, read Alice Miller’s work) – it’s employed for changing all of our behaviour – exercise, diet, relationships – all behaviour can be altered. We also live in a world where in order to function, some conformity is required. But is autism just a behaviour to be altered? Is normal the gold standard of autism "treatment"? And if an autistic child never becomes “normal” (and they won’t), they are only suitable for institutionalization? I cry and fear for Adam because of this. And so should all of you.

What if we gave permission to these parents to mourn, but to also accept autism? What if we said, okay – all parents deserve to be supported, to be able to choose the educational method they feel most suitable for their child while we continue to conduct the science that seeks to understand autism better, and to respect and educate autistic people more effectively? What if we could allow autistics in this discussion to tell us what works without feeling like we might be accused of being bad parents for doing one thing or another? It seems to me that we need to bring all of these voices to the table to discuss what we have learned over the last fifty and even the latest fifteen years, and what needs improving. We can't do that if this ABA advocacy group marginalizes everyone who does not agree with their agenda. Parents at the Joy of Autism conference came up to me and said “we needed you thirty years ago.” Why? Why do parents and autistics continue to feel so bullied by these parents? And that’s the word that they consistently use: bullied.

Any party that does not allow another party to come to the table and have a voice, namely, letting autistics speak for themselves and participate productively in advancing autism education, is wrong. Will Margaret Wente understand that aspect to this issue after her unbalanced autism column?

I approached Margaret Wente to cover The Autism Acceptance Project. We sent her our video.We invited her to come and listen to actual autistic people speak about autism. She responded with silence. She certainly had my number.

Margaret Wente didn’t do any fact finding. She didn’t interview one autistic person. She didn’t call the thousands of parents who do not subscribe to the perjorative so-called “autism advocacy.” I was glad to read that Michelle Dawson had blogged about the story when I returned to Toronto today. I am going on CBC tomorrow. Airtime to be announced. In the meantime, you can write a letter to the editor regarding balanced autism reporting and the lack of autistic people contacted at:egreenspon@globeandmail.com

It saddens me everyday to see that the ABA “advocates” want to make this a zero-sum game: either you’re an absolute ABA supporter or you “swim with the dolphins.” It should be extremely frightening to society at large to hear parents call their children useless, or to think that ABA and institutions are the only options for autistic people. It is even sadder when a Globe and Mail reporter doesn’t do her research to either get her facts right, or to get the very important other side of the story from autistic people and the many parents like me who just wants my son to go to school and be allowed to receive the accommodations he requires – whatever they may be at different points throughout his life.

7 Comments:

Blogger Kristina Chew said...

It's been a good thing for us to fashion a compromise position of ABA and neurodiversity in our autism advocacy----not the norm, I suppose.

1:57 AM  
Anonymous Anonymous said...

It was disappointing that no opinions other than the standard ABA treatment are catching newspaper headlines.
Popularity rules the day when it comes to our newspapers.

Scorpio

5:12 PM  
Blogger Alyric said...

Why are these parents so one-eyed about ABA? I recall at the time of the Auton decision, a fractious discussion, on a well respected forum for Asperger's actually and the sympathy was all for the poor parents who would not get this treatment mandated and paid for by the State. Being a novice, I asked why the parents had specified ABA and only ABA. No one could really answer that question. And then FEATBC cajoled Ipsos Reid Canada in to running a poll - if you could call it that. I've never seen such a travesty of polling in all my life - shocking and not a good advert for Ipsos Reid as a copmpetent polling agency - something I believe they are slowly but surely discovering.

So then I got curious and spent around six months not writing anything but reading everything I could find on ABA - not the method but the theoretical background - its foundation - its basis in Science. This might come as a surprise to parents who have invested their time, money, hopes asnd dreams in this therapy, but there is no theoretical underpinning to ABA - it is not a Science, does not use the scientific method and never has. That might explain why it does not work as well as it's claimed to work and probably not more than placebo.

It also explains the curiously elastic portrayal of their children's progress or lack thereof by some gung ho advocates for ABA. At the time of the Auton decision and when Michelle wrote the 'Misbehaviour of Behaviourists', Kit Weintraub was selected (or self-selected) to give the the parent's perspective - the voice from the trenches.
Her daughter Emily, she assured everybody was a 'happy 10 year old' and it was all due to ABA. Michelle turned up something recently that Weintraub had written regarding the Judge Rotenburg Centre and their use of skin shocks for 'severe' behaviour. According to Weintraub, people didn't understand the necessity of these types of aversive treatments for behaviours such as self injury that were intractable and could not be handled any other way. Whatever happened to the 'happy 10 year old'?

Similarly, there is Jean and Michael Lewis' spiel about the need for institutionalising their son if his ABA program stops. Now this gets interesting. This Wente person is a jounalist right? So, how come she didn't pick up on, not one, but two totally illogical statements.

1. The child is doing well in a mainstream class. How is that compatible with the need for institutionalisation? Something not right there.

2. If ceasing the therapy is akin to irreversible decline of the client to the level of requiring institutionalisation, then how effective is the therapy?

I think this level of expediency with regard to the 'facts' of the matter should be more widely known. If there is going to be a debate in Canada about the effectiveness of therapies then the unreliability of parental testimony needs to be factored in to the equation. Otherwise, autistic children are going to be subjected to therapies based on nothing substantive in the way of theory and with questionable outcomes.

As to the religious fervour of the advocats for ABA, my hypothesis is that this is largely a tribal phenomena - we, the tribe, have determined that this is the 'one true way' and therefore it is. Actually, it's a rather nice example that being socially wired can have some unintended if entirely predictable consequences.

5:55 PM  
Blogger SquareGirl said...

I can't help but see that there is a huge message with autism: We should refrain from branding, villianizing and dividing. Differences and dissention serve to define us in many ways, yet those of us committed to individuals with a diagnosis of autism are called to find common ground. ABA is neither the answer nor the enemy. Acceptance is a huge key and why I am drawn to your message Estee, but I think acceptance includes where every individual is at. ABA and any other sevice neither saves nor fails us, as it is not about a branded service but about individuals. I believe when it comes down to it, it is not the evolution of services, ideologies, therapies, etc., but the evolution of all of our souls into more accepting, compassionate, creative, loving people. I feel that we need to stop looking at services as the enemy or solution and begin to realize that it is the human spirit and soul that is what will further the way we accept, love and integrate diverse individuality.

1:14 AM  
Blogger Alyric said...

"I believe when it comes down to it, it is not the evolution of services, ideologies, therapies, etc., but the evolution of all of our souls into more accepting, compassionate, creative, loving people."

This is a noble sentiment, but I think it's also a misplaced sentiment because it is out of sync with what is happening in the real world. As evolutionists would be the first to tell you, 'evolution' of anything is value neutral and can just as easily be a degeneration of the status quo as a further development of the status quo.
Frankly, the current proliferation of 'diagnoses of difference' lends credence to the belief that the age we are living in is degenerative with regard to acceptance of the full spectrum of what it is to be human. We are not, in any way shape or form evolving into "more accepting, compassionate, creative, loving people." Quite the opposite. For a host of reasons, some of them financial, difference is being devalued and all those qualities you cite, which are indeed the natural outcome of acceptance of difference, are being marginalised.

5:49 PM  
Anonymous Anonymous said...

"But when I read parents with this special agenda to take all other services and special education away from our children EXCEPT ABA – who suggest that our children – my child – should be institutionalized without ABA treatment, then my tears or worry flow a little faster."

I have never seen a parent advocating for ABA take the position that you allege. Can you provide a link to a source?

I am a parent of a severely autistic boy who advocates for ABA interventions for my son and others - whose parents want the availability of this evidence based effective intervention for their autistic children. I know of no one who argues that you should be denied other interventions for your child.

Harold Doherty
Fredericton New Brunswick

http://autisminnb.blogspot.com/

8:11 AM  
Blogger Estee Klar-Wolfond said...

Autism Reality:

Certainly. See "Redirect All Funding" section in the following:

http://featbc.org/downloads/AutismInCanadaflyer.pdf

9:19 PM  

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