Reasons to be cheerful

AUTISM IN CANADA 

Regular readers of Michelle Dawson’s blog [and, if you are not a regular reader, I commend it to you] will be aware that the major autism societies in Canada are fervent believers in the ability of intensive behavioural intervention, by which the mean the applied behaviour analysis of Ivor Lovaas,  to normalize the behaviour of autistic children. They are persistent in their attempts to make such treatment mandatory for all autistic children and are not above using misinformation to win their case.  

These self appointed ‘autism advocates’ argue that unless autistic children receive IBI/ABA in the early years they will be unable to learn and will face a lifetime of institutional care. Like the mercury malicia in the USA they sieze upon headline figures for autism prevalence and suggest that all of these are victims of an epidemic that robs children of their humanity and condemns them to live out a worthless existence unless they can be recovered. They ignore the existence of Canada’s autistic adults and when adults like Michelle Dawson challenge them and speak out for recognition and acceptance, she is vilified.

So I was pleased to read today of this research project in Canada

Researchers from the University of Calgary, University of Manitoba and University of Saskatchewan are looking to shed some light on the often-misunderstood world of autism.The group of professors and students from the division of applied psychology are conducting a study that focuses on 100 youth aged 17-21 diagnosed with high-functioning autism, or Asperger’s syndrome. The study is designed to look at the under-studied adolescent demographic and assess the positive aspects of these points in the autism spectrum.

Positive aspects of autism? what will Canada’s ‘autism advocates’ have to say about that? When they publish their results,

the team hopes to dispel some of the stereotypes in mainstream media and pop culture.

Many of these stereotypes are being reinforced all the time by the propaganda coming from the mainstream autism societies. It is good to see that while they may be setting the political agenda regarding autism in Canada, there is still an independent tradition of enquiry amongst Canadian academe.

THE AUTISM ACCEPTANCE PROJECT

This is as good a time as any to remind people of The Autism Acceptance Project, [TAAP] which is also based in Canada. The website has just had a makeover and carries the inspiring title, “Tapping into Human Potential and Dignity.” and remember to add TAAP founder Estee Klar Wolfond’s blog to your feed along with Michelle Dawson’s.

6th INTERNATIONAL MEETING FOR AUTISM RESEARCH [IMFAR]  

Michelle Dawson is not only a campaigner for the rights of autistic people. She is also a researcher and will feature at IMFAR this year with one oral and two poster presentations. You can read the abstracts on Michelle’s blog:

THE AUTISM AWARENESS CENTRE

I know very little about Maureen Bennie, except that she is the driving force behind the Autism Awareness Centre,

Canada’s National Provider of ASD Conferences

Leading the Way for Change!

She is also a parent of two autistic children and is running home programmes of Intensive Behavioural Intervention with both of them. I checked out the website because I am going to one of their conferences in the UK this year. I was pleasantly surprised. Maureen reviews a lot of books on the website and has some positive things to say about autism.

How To Understand Autism the Easy Way requires a beginning-to-end read because all of the chapters hinge on the first chapter’s explanation of social and computer thinking. The author does a beautiful job of explaining what it is like to autistic through the concept of social and computer thinking. The writing resonates respect and a positive outlook on this disorder. It is clear that Alex Durig feels a sense of awe about these individuals. The reader will feel this awe and develop a new awareness of autistic perception not explored in other books. [How to Understand Autism - The Easy Way by Alex Durig]

Norm Ledgin successfully puts to rest the negative connotations an Asperger’s diagnosis usually has. He’s devoted his literary energy into seeing the positive aspects of Asperger’s Syndrome. Society generally looks upon people with different or unusual traits as abnormal, but Ledgin sees the Asperger’s traits as great gifts. He uses famous role models to emphasize the point of what these unusual traits have contributed to society and have made us richer for it. [Asperger’s and Self-Esteem: Insight and Hope by Norm Ledgin]

Readers can empathize and smile at the joys of life this young man has experienced in his short lifetime. You will realize autism does not have to be a deficit but a different way in which to view the world. [The Mind Tree by Tito Rajarshi Mukhopadhyay ]

I have no wish to minimize the serious problems that advocates for autism acceptance and understanding face in Canada. But, as Ian Dury reminds us, there are reasons to be cheerful.

dury

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26 thoughts on “Reasons to be cheerful

  1. “There Ain’t Half Been Some Clever Bastards”

    Might have to buy this CD if only to hear more than the two Ian Dury songs I already know. And what happened to the Block heads?

  2. I’m not sure what’s good about How To Understand Autism the Easy Way. I’ve read the book, and while it’s positive about autism, its theories about what autism is are virtually nonsensical. Are we supposed to assume that anything autie-positive is automatically good even if it’s not accurate or relevant to reality or anything?

  3. Ballastexistenz, Dave,

    I hold no brief for Durig. I have not yet read his book. I was quoting from the review to demonstrate that at least one Canadian parent who uses IBI also looks favourably on an author who, in her opinion, “resonates respect and a positive outlook on this disorder.”
    That is in sharp contradiction to the view of most Canadian parents committed to IBI/ABA.

  4. Thank you for sharing your expertise on Canadian autism advocacy with us Mr. Stanton. Your deep knowledge of the “view of most Canadian parents …” is matched only by your balance and objectivity.

  5. I’ve yet to read Alex Durig’s books; many thanks for the links. I found his website (How to Understand Autism) and noted he also has a book called “Autism and the Crisis of Meaning”—has anyone read this?

  6. I can confirm that the attitudes of many Canadians to cognitive deviancy are far from positive. I think that, when compared to the US, there is generally a higher premium on conformity in Canada. This may explain the shocking attitudes I have seen since moving here (shocking in part because of the great lip service that is paid to diversity) and why a conformity/compliance oriented approach such as ABA would be attractive in Canada.

  7. Harold
    You are right. I have no way of knowing “the view of most Canadian parents committed to IBI/ABA.” For all I know they may all be as open minded as Maureen Bennie apears to be.

    It would have been more accurate if I had referred to “the view of most Canadian parents organizatons committed to IBI/ABA.”

    Heaven forfend that there should be any distortion of other people’s viewpoints or unsubstantiated claims in a discussion about autism.

  8. If anyone wants to read Durig’s theory of autism, here’s the short version from his website:

    What Is Autism?

    To me, his theory is a great example of the fact that in the autism world, anything goes as far as theories of autism. The theories don’t have to make sense, they don’t have to have a shred of evidence backing them up, people can just write them out of nowhere if they feel like it. A friend described this field as a field where people whose skills were better suited to poetry or creative writing could pretend to be scientific and get away with it.

  9. As a mom of an autistic child in Canada I can tell you that in my own city I have only met one other mom who is not using ABA/IBI to make their kids more “normal”. It really seems to be something they’ve clung to here. They want it in schools. They want it completely funded. I don’t want my tax dollars to go to complete funding of a dubious treatment that at its very best has only shown to help just under half of autistic children. And exactly how it’s “helping” is another issue.

    It’s a way of teaching that I dabbled with briefly only to find my son does not learn that way. And I should also mention that here in Canada you’d better not admit to anyone that you’re not mortgaging your house to provide as much IBI as possible to your child so they don’t end up institutionalized….it’s seen akin to child abuse.

  10. As a Canadian who has been working in the field of autism since the late eighties, I can only concur with everything that you have written Mike. The majority of parents look to IBI as the answer, mainly because the majority of professinals and autism societies tell that it is the ONLY hope that they have…..even here in Alberta where we have basically given up on it because it didn’t prove to be that helpful. I spend my time speaking out, but I fear few are listening.

    As as for the Autism Awareness Centre: I attended one of their conferences as I believed the rhetoric they share. I went through the books they sell with a woman on the spectrum and we were both horrified that the majority of them were based on the belief of mental retardation. When we confronted Maureen about this situation, she replied “I only stock the books that sell, and these are what sells. So be careful Mike.

    But there are reasons to be cheerful. One that you didn’t mention is that the annual Autism National Committee conference will be held in Edmonton this fall and the majority of the speakers will be on the spectrum or will be parents and professionals who hold like views to you…….which is NOT a bad thing Harold.

  11. “autism societies tell that it is the ONLY hope that they have”

    That is exactly what I have witnessed here on PEI, along with the president of the local autism society telling parents, a number of them new and attending a meeting for their first time, that “our kids are horribly sick”. The last meeting I was at (to take info to them on Dennis Debbaudt’s seminars) a new mom was told that “ABA *cures* about 50% of kids”.

  12. I’ve got to agree with Ballastexistenz about Durig’s theory of autism. To my mind, it is certainly good to find a Canadian blog posting autism-positive stuff, but as a separate issue, many more people will be convinced that it is possible to approach autism in an accepting and positive way if the arguments we offer for that way of looking at fit well with existing research and the norms of scientific discourse.

  13. Look at it this way Harold – at least you can come to Mike’s blog, speak your piece and not get edited or deleted. You are not even intellectually honest enough to allow opposing discussion on your blog.

  14. One problem I have with behavioural intervenion programmes for autism is that they seem to contravene the basic tenets of behaviourism that I learned as a student teacher.

    We were taught to modify our behaviour in order to positively reinforce desired outcomes. Lovaas started with aversives to eliminate unwanted behaviours in the children.

    We were taught that all behaviour is meaningful. Children behave for a purpose. If we find the behaviour inappropriate we should first try and work out the reason for the behaviour and then teach a more appropriate alternative. ‘Alternative’ means that it is more effective in achieving the child’s purpose.

    Discrete trial training seems to be about the child learning compliance in order to please the trainer. There ought to be an intrinsic benefit to the child. Otherwise there is no reason to maintain the behaviour beyond the training sessions.

    I do accept that the insights of behavioural science and the techniques it suggests are useful tools for any teacher. But their use in autism contradicts many of the theoretical supports for behaviourism.

    And if autistic children can only learn in this way, how did they learn all the stuff that the ABA therapists want to unteach them?

  15. Mike,

    While early intensive intervention is probably a good idea, it certainly isn’t the case that a child without will necessarily fail. Anyone promoting ABA and/or Lovaas in this fashion is much more self styled prophet and much less scientist; I’d be wary about their sage advice. Behavioral professionals are supposed to be behavioral scientists and let the individual’s data dictate the next course of action and conclusions. While those of us doing behavior analytic work fashion ourselves as forward thinking, we fall into the same traps as others where we start making gross generalizations and predictions with no evidence, other than popular myth, to validate our arguments. Discrete trial teaching is one way to teach but not necessarily the only way to teach. If you’ve been taught and trained to do discrete trials, verbal behavior, whatever, we go to that bag of tricks. The problem, as you pointed out, is that the bag of tricks should be tailored to the individual.

    Case and point, a team of very well intentioned behavior analysts were doing massive discrete trials with a non-speaking 6 year old boy with autism and self injury. When we were brought in to evaluate the program by the parent, we found that the self injury was functioning to escape the demand: the hundreds of sit down discrete trials the boy was forced to do. When the boy was given 30 minutes of down time, the dozens and dozens of self injurious behaviors went to zero! Each person is different. As we say, “There is no substitute for your own data!” Doing discrete trials to be “behavioral” may actually be the least behavioral thing to do. If parents and professoinals think about function first: both the functions of the learner and the teacher, we’d probably be designing more effective programs.

  16. Hi Andrew,
    thank you for your comments. My big concern is about all the well intentioned but wrong ABA practitioners out there, blithely doing harm while being utterly convinced that they are doing the right thing for the children following their programmes..

  17. Certifications and licensures, for some, are permissions to move away from being thorough and scientific and to be cavalier and dogmatic. As a good rule of thumb, parents should be able to see a pragmatic benefits from services, not just changes on a graph.

  18. In response to Gail Gillingham’s comments posted on March 12, 2007, I have never said to her that I only stock books that sell because that has never been my philosophy. I spoke with her very briefly at our conference in 2006 in Edmonton and Gail had a booth at our conference.

    I carry a wide range of literature and the majority of my books are not based on a belief that autism is a form of mental retardation. If Gail were to keep up with the new developments on our website, she would see that we have added about 100 more titles than what we had the previous year from a variety of authors.

    We also have an RSS feed that pulls in the latest news about autism from over 3,500 medical sites so you can read the most up to date information as it appears on the web.

    I am proud of the work that I do in this country and work 7 days a week at it. We have no support to run the Centre and do it all on our own stream.

    I have not only had IBI in my home but have also employed other biomedical interventions as well, most without success. Our children have done as well as they have because they have been accepted for who they are, we have not tried to cure or fix them because we love them for who they are, not what they may become.

    The important thing to remember is each child is an individual and everyone has a separate set of circumstances in their own home. What I do is try to support people in the decisions that they make which they feel is right for their child and try not to sway them that biofeedback or taking Zeolite is the answer. Parents need to be able to explore their options.

    We are not therapists at Autism Awareness Centre. We provide training around the country and support parents and professionals in any way that we can.

    Maureen

  19. One other thought, Mike , in response to Gail’s comments – she knows nothing about our Centre nor is she known as an expert on books in the autism field. Have a look through the books that I carry in our bookstore on the website and you can see for yourself what books I carry. I can’t even recall Gail ever speaking to me at the Edmonton 2006 conference about the books that we sell. She was busy in her own booth talking about biofeedback.

    Also, we will order in almost any request that anyone has for a book unless it is very difficult for me to import here to Canada.

    Thanks for hearing me, Mike, and I hope to see you at our UK conference this month with Dr. Temple Grandin and you can see for yourself what we do.

  20. Pingback: When your normalcy gets too big. « Action For Autism

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