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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

Saturday, October 20, 2007

 

The Mismeasure of Autism: The Basis of Current Autism "Advocacy"

14 Comments:

Blogger Autism Reality NB said...

I have read your article. Once again your demonstrate your lack of understanding of autism. Once again you have failed to accept - the negative realities of autism.

You criticize what you see as wholly negative views of autism and then you commit the same error by painting a romanticized view of autism, one which ignores the ugly realities of self injury and life long care and dependency on others that is the future for many severely autistic persons.

And you mock and disparage all of those parents who do not share your pollyana views. Too bad.

5:13 AM  
Blogger Alyric said...

I think it may take a month or two to properly digest this quite marvellous piece of advocacy. Loved all of it. Totally awestruck!

11:50 AM  
Blogger Estee Klar-Wolfond said...

Autism "Reality"

Where did I leave out the challenging aspects of autism? It is acknowledged everywhere throughout the paper.

Nelson Mandela in his autobiography A Long Walk to Freedom speaks of the media and bias and I thought it would be interesting to discuss in terms of your bias, Harold. He likens this search for truth to an act of chasing elusive shadows. He describes the media as "only a poor shadow of reality; their information is important to a freedom fighter not because it reveals the truth, but because it discloses the biases and perceptions of both who produce the paper and those who read it."

As an ABA advocate who condones negative representations of autism in the media, we must consider the poor shadow of reality that you present. The purpose of my paper was to illustrate this bias, and seek what's missing from the dialogue -- namely autistic and other disabled people.

Not once on your blog have I seen a balanced representation -- showing families who accept the challenges of disability and are living fine with autism, thanks very much. No, instead you target them. You put their pictures on your blog and demonize them because they don't comply with your marketing model or the way you want to think about autism.

What we need is a better way of society accepting and viewing autistic people in order to receive a variety of supports that may be MORE suited to their needs than strictly ABA. Your laser focus on advocating for this, and not accounting for other stories is terribly imbalanced. If I were not to discuss the challenges of the disabling aspects of autism, I would be too. Yet, what you accuse me of, I do not do.

We all have our bias. That needs reflection by us all. As for mine, I am certainly far better off accepting Adam as he progresses with support, but without your proposed ABA programs. We know of many families waiting years to get AAC devices or access to many other needed services -- all because they are supposed to "talk" with an VB or ABA program, even if they cannot.

But I'm not here to discuss that per se. I am here to make the point that this catastrophization of disability (using Norman Kunc's phrase) is not fair. It is done without including the very people it paints the dark picture of. It's time to give the "microphone" to autistic and other members of our disabled community.

8:11 AM  
Blogger Alyric said...

Hmm, Harold turns up, right on cue with the predictable message - we're leaving out the truly disabled - the focus is wrong - yada yada.

I think I'm going to remain puzzled by this forever but if, for the sake of the arguments we admit to only two broad groupings of humans - autistic and non-autistic (not true at all but useful here) and admit that there are people greatly incapacitated in either group. Why is it that for the autism grouping alone there is an insistence that we take the seriously incapacitated as the poster children? Is this reasonable? We don't do it for non autistic children AFAIK.

I think it was Phil Schwartz's idea that folks think that the resources represent the ultimate zero sum game. A great pity that - does a lot of damage, IMO.

10:58 AM  
Blogger Autism Reality NB said...

Actually you see only what you want to see on my blog site Ms Klar-Wolfond.

You overlook the many positive comments about my son, including pictures of a truly joyful boy who enjoys his family, his outdoor activity, his reading and ... his ABA therapy.

Here is a shocker to you and Alyric. Autism is a disability that imposes serious restrictions on the quality of life of those who are severely affected by ASD. Your blog never carries any articles which focuses on how these people live. You are much too busy trying to convince the world that autism is a joy.

In the real world, away from the internet most parents don't buy into that silliness.

11:10 AM  
Blogger Estee Klar-Wolfond said...

I also don't think that dividing people into "high functioning" and "profoundly disabled" clearly illustrates that ALL people should be valued and indeed, all require different kinds of assistance (Autism Reality clearly attempts to make these divisions and victimizes the parents as having the tough time with these more "profoundly" disabled kids. While I do not wish to detract that there are families with more severe issues, I do not agree that everyone shares the same outlook as Mr. Doherty regarding them.)

The division is dangerous, trying to parse human beings into divisions of two -- competent/incompetent; worthy/unworthy -- that latter which suggests that others should make decisions for them based on lesser value to society and we can do virtually anything to them without their consent. Unworthiness also leads to dangerous treatments and harmful outcomes. Unworthy people are segregated and institutionalized so that society doesn't have to see them. Unworthy individuals -- well, why bring them into the world in the first place...right?

Henry T. Greely, J.D., Deane F. And Kate Edelman Professor of Law at Stanford University says:

"Another set of questions concerns what we should allow people to do voluntarily to their personalities -- and indeed when and whether such decisions are voluntary. But coercion raises even harder issues. The Supreme Court has already allowed mentally ill prisoners to be forcibly medicated so that they can be sane enough to be executed. Should drunk drivers be stripped of the ability to enjoy alcohol, and hence the temptation to abuse it? To what extent should people be 'cured' of what they consider to be their personality traits? Should parents be able to use neuroscience to 'adjust' their children, something critics think is already happening with prescription drugs but that new techniques might make more powerful? As a parent of two teenagers, I can imagine the attraction of pills to 'help them' clean their rooms or do their homework before the last minute. On the other hand, should the state be allowed to interfere in how parents choose to raise their children? What of the government, near or far, that might use neuroscience to make dissent disappear -- not through the bread, sex and soma of Brave New World or the propaganda of torture of 1984, but with a little blue pill? These are not new issues or new fears, nor do they have clear answers, but the rush of progress in neuroscience gives new importance to finding workable and ethical answers to them."

11:20 AM  
Blogger Estee Klar-Wolfond said...

Hi Harold,

Actually, I've never seen you at any of the autism conferences where a few hundred autistic individuals, of varying ability and disability attend.

I once made a comment on your blog at how lovely your son looked in the photo...I guess you forgot that (and fail to mention it here).What I don't want MY son to experience is the overwhelming media message that he is ill -- that you can "love the child but not the autism." That is the difficult side of autism being the "invisible disability." You are just supposed to "be normal," cause if you can either do things one day, but not the other, then you are not motivated enough (to use ABA jargon), or if you look normal you have to "act normal," or if you can mand for what you want with words, then it must be possible that you can speak in whole conversations, so we'll make you do a VB program and MAKE you speak.

I do not wish to detract from the possibility that some people benefit from certain types of teaching methods, but I am terribly afraid that others will not understand the disability of autism -- not understand it and subjugate autistic individuals to unfair treatment that seeks to normalize them instead of assist them. (See what's happening with aversives and electric shock at the Judge Rotenberg Center). Henceforth, my pleas for the ABA advocates to change its approach and method of public advocacy. We all share the challenges, and it is time to outline the VARIOUS means we all wish to assist our children to lead fulfilling lives.

No matter what, I want Adam to live in a world that just accepts the way he is with his disability, and not view him as less worthy. I feel that this is the arena of support he needs to succeed.

His worthiness should entitle him to access, inclusion, the right to a shadow and an AAC device and in home support (must I mention that we must travel to the US to get proper training in AAC because this is not supported properly in Canada??)Do you think the ABA community could move into the larger framework -- what autistic people say it is they need? What Connor and Adam will need today and years from now?

I don't know if what we share in the love for our children will ever bridge the divide between us. If I am "Polly anna" about anything, perhaps it is that.

Not everyone agrees with your brand of "advocacy" at the exclusion of autistic people. That part, for the sake of Connor and Adam, has to change.

11:36 AM  
Blogger Estee Klar-Wolfond said...

btw -- in the real world, The Autism Acceptance Project's membership has nearly doubled since the Ottawa Citizen article in September. That means 1000 people agree and we are only a year old. And this does not account for the individuals who have not signed on as members, but visit our website and email us regularly.

Thanks for your "real world" insight.

11:37 AM  
Blogger Joseph said...

Harold is being disingenuous. When Michelle Dawson discussed self-injury, Harold's response was to question her diagnosis.

All he does is try to discredit with vagueries and inuendo. Any facts he doesn't like he calls a "romanticized view." I have never seen him make a thoughtful well reasoned argument explaining his position.

12:08 PM  
Blogger Prometheus said...

It's strange that none of the people who claim that autism "...imposes serious restrictions on the quality of life of those who are severely affected..." ever bother to ask those affected by autism.

To be sure, autism - from the outside looking in - may not look like a very inviting life. However, there is no way of telling whether those who are affected by autism see it that way.

Now, at this point, people like Harold are probably going to toss in expostulations about "smearing feces" (a favorite)and self-injurious behavior. These are all true, but I have to wonder, "Why do autistic people do these things?"

Is it possible that they finger-paint with feces and bang their heads in response to unreasonable demands put on them by their caregivers?

Turn it around. Imagine that a "neurotypical" person were placed in a situation where they were forbidden to make eye contact and, whenever they did make eye contact, someone would force their head down, slap the table or take away a favorite activity. And imagine that this "neurotypical" person did not have ability to communicate with their "caregivers".

Wouldn't you expect that sort of situation to lead to head-banging, feces-smearing, aggression or withdrawal?

This is not to say that autism is a walk in the park or even that we shouldn't try to treat it or prevent it - those are discussions for another day. I'm just suggesting that we have no way of knowing whether autism causes "...serious restrictions on the quality of life...", even in those "severely affected".

Not unless we ask them - and listen to the answer.


Prometheus

1:29 PM  
Blogger Estee Klar-Wolfond said...

Very powerful remark, Prometheus. I too am not "against" assisting autistics in a variety of possible ways. I do believe that we are gung ho on "normalizing" for its own sake and moving ahead too fast without asking this very community of autistic individuals what "assistance" and "help" means for them.

1:42 PM  
Blogger Jennifer said...

Harold,

Can you please tell me what is bothering you the most? Is it that your son is not as you expected him to be? Is it that he will need more support than the average child? Is it that science has not yet found a solution for your problem?

There are many children of your son's age that will need institutional support for their lifespan. They will never be able to function in normal society. I am talking about NT children, not autistic children These children are those who will grow up to be adults placed in a certain institution - the prison system. These children, and particularly, their parents, are worthy of our sympathy.

My point is that there are no guarantees in life. Even parents of NT children do not have any assurance of perfection (whatever that means). You seem to assume that your child will have a poor outcome. I'd like to encourage you to expect the best. Your son, who you clearly love, may yet surprise you.

7:35 PM  
Blogger Dinah said...

Never underestimate the crippling force of negative expectation; even highly specific intense positive expectations can be devastating since they are so sharply outlined by those very negative possibilities. I reckon at all times assuming and giving good faith and good will between oneself and the child one loves, autistic or not, must be a basic. In my opinion that is the main reason why some people doing ABA with autistic children are sometimes able to transcend ABA's beastly behaviourism - because they establish a connection with the child which feels good *to the child*.

I think the comments left by Prometheus and Jennifer make perfect sense, and Estee's responses do too. I don't think anybody here doesn't know how disabling life can be if you're autistic. I've worked with institutionalised adults myself and I'm 100% sure they're all well able to enjoy life when they get the chance.

11:08 AM  
Blogger Alyric said...

Thanks for this Estee

"The division is dangerous, trying to parse human beings into divisions of two -- competent/incompetent; worthy/unworthy -- that latter which suggests that others should make decisions for them based on lesser value to society and we can do virtually anything to them without their consent. Unworthiness also leads to dangerous treatments and harmful outcomes. Unworthy people are segregated and institutionalized so that society doesn't have to see them. Unworthy individuals -- well, why bring them into the world in the first place...right?"

It sums up what I'd like to say but couldn't find the words for.

3:40 PM  

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