Tuesday, February 21, 2006

OUR CHILDREN ARE SMART. NOW WHAT?

A story was reported recently in the Canadian press that was of interest to me as it involves Michelle Dawson. It has been quite some time since Ms. Dawson left any comments on this blog. She is well known in the autism world as an extremely high-functioning adult autistic with very strong opinions. Although I disagree with many of those opinions, the intelligence with which she states her views is undeniable. And intelligence is what the recent story is all about.

An article in The Globe and Mail discusses a recent study released by a group of researchers led by Dr. Laurent Mottron, a professor of psychiatry at the University of Montreal. Despite having no college education, Ms. Dawson has become an integral part of Dr. Mottron’s team researching autism. Their most recent published study indicates that autistic children who might score in the retarded range on the standard Wechsler I.Q. test actually score closer to the level of a college student on the Raven’s Progressive Matrices. Their conclusion is that autistic children tend to be more intelligent than once was thought.

It’s nice to know that science is finally catching up to what most parents of autistic children already know; our children are smart. That point is a rare point of agreement between both sides of the needless conflict between so-called neurodiversity advocates and those of us they refer to as “curebies.” The issue that leads to disagreement may be summed up by questions posed by Dr. Mottron in the article: “What do we do with that intelligence? How do we let that person achieve his potential?”

If Dr. Mottron’s research leads to increased opportunities for autistic individuals ⎯ without regard for their level of “functioning” ⎯ I would be happy indeed. How can anyone really argue with that goal. But Ms. Dawson has other goals as well:
She makes no secret of the fact that her participation in the research is guided by self-interest, that it gives her more credibility when she is fighting other battles — of which there are many.

In much of the autistic community — support groups dominated by parents of autistic children — Ms. Dawson is public enemy number one.

“They want autism to be a sickness that needs to be cured,” she said. “They say horrible disgusting things so they can get more money for their lobby groups. They make me sick,” Ms. Dawson said.

Personally, I have never considered Ms. Dawson an enemy, much less “public enemy number one.” I’m not a part of any “lobby group,” nor do I raise any money for a “lobby group.” I respect Ms. Dawson and agree with much of what she says. And yet there is so much with which I disagree.

If Ms. Dawson has become controversial, it has much to do with her crusade against anything that might smack of labeling autism as a disability. She famously intervened in the Auton case, in which parents went to court to get the British Columbia government to fund ABA for their autistic children. The catch was that it had to be established that ABA was a medically necessary treatment. There were certainly arguments to be made in the case; I certainly wouldn’t argue that treating autism as a mental disorder is factually incorrect. But Ms. Dawson’s Factum to the Supreme Court attacks the morality of intervention:
62.

Ms Dawson submits that if the Respondents’ position is adopted, autistic people will not have the same equality rights enjoyed by non-autistics. Autistic people will be seen as unworthy and undeserving of equal protection and benefit of the law. Their equality rights will amount to an obligation to be or to act much less autistic or not autistic at all.

63.

Further, accepting the Respondents’ position will have the direct effect of demeaning all autistic individuals and rewarding those who have chosen to demean autistics in order to fulfill their goals.

I wish Ms. Dawson would stop seeing people like me as the enemy. Most of us have no intention of forcibly making every autistic individual undergo any particular intervention, be it ABA, RDI, biomedical, or anything else. But many autistic children need some form of intervention. Not all of them are destined to find ways to meaningfully utilize their intelligence in the way Ms. Dawson has without intervention.

The arguments about the nature of autism and whether it acts as a disability so often center on the issues of intelligence and pure science. To be sure, it would be stupid to summarily dismiss the value of studies like that which Dr. Mottron’s group has given us. I can’t help but think, however, that we err by concentrating on simply the question of intelligence, while we ignore the social and cultural questions that also define dysfunction.

Ms. Dawson correctly argues that autistic individuals should not be forced to think or act like so-called “normal” people. Nevertheless, the human race has a social construct that favors those that are able to use their individual gifts in ways that benefit society as a whole. We may struggle to change the negative views that have traditionally been assigned to autism, but humankind’s basic social nature will not change. Even for someone like Ms. Dawson, who has overcome adversity and prejudice to a remarkable extent, making a contribution is not easy. Again, from The Globe and Mail article:
. . . Like many autistics, Ms. Dawson has reduced social skills and, while she can put forward brilliant ideas, she is incapable of managing simple tasks that are essential to the research process.

“I have some spectacular deficits,” Ms. Dawson said matter-of-factly.

Nevertheless, Dr. Mottron said “she is changing the way the world views autism and that will have a lasting impact.”

I don’t dispute Ms. Dawson’s positive impact on the way autistic individuals are viewed by the neurotypical world. I only wish she would not judge us ⎯ and especially not judge our children ⎯ based solely on her own experience. For that, too, is stereotyping.

Finally, a different perspective on this same subject, see this recent post at Ballastexistenz.

70 Comments:

Blogger Kristina Chew said...

Your post points to a debate we got through every day---how much do we "educate" and "ABA"-away Charlie's stims, worst behaviors, etc. that have made it all but impossible for him to learn to read and resulted in behaviors like SIB's that pretty much bring everyone's life to a grinding halt. Ms. Dawson, we are all together on this long journey and I would wish that my son could address others in words like yours; could be a research partner, not a subject of study. Thus, interventions from the behavioral to the biomedical, and a happy boy.

We all have a lot of work to do; thanks for clarifying why we too often get stuck before we get started.

2/22/06, 12:14 AM  
Anonymous Anonymous said...

The part where you say that Michelle Dawson is considered a really high functioning autistic is probably not correct. Michelle has experienced some of the symptoms considered most severe, such as SIB. For a really high-functioning autistic, consider Dan Aykroyd or Vernon Smith. (It really depends on who you ask as to what 'high functioning' is like).

-Joseph

2/22/06, 3:38 PM  
Anonymous Anonymous said...

The problems with ABA are the following:

1) Aversives.

2) No placebo-controlled studies. (The improvement on placebo is quite remarkable).

3) No data on immediate adverse effects.

4) No data on long-term adverse effects.

That's about it. Anyone care to address?

-Joseph

2/22/06, 4:09 PM  
Blogger not my blg said...

Joseph,

I don't know any ABA program that uses aversives. Placebo controlled studies on ABA? What would that be (i.e. what would a ABA placebo be)? Perhaps you mean double blind controlled studies? I'm not sure how you could do that. No data on immediate adverse effects? Again, I'm not sure I know what you mean. No data on long term adverse effects? How would you prove that ABA caused long term adverse effects? I'm not sure by your post that you know what ABA is. In my house, we do AVB (Applied Verbal Behavior). My son couldn't speak nor could he handle transitions 9 months ago. Now he is talking in sentences (although mostly scripts, but appropriate scripts) and he no longer has transition problems. He is enrolled in an NIH study which is being conducted at UNC, Dartmouth, UCLA, Yale and Mt. Sinai Medical School. In the beginning, one of the principal investigators said that my son, and these are her words, "is robustly autistic". Needless to say, I wasn't too happy with this description of him. However, last Monday during our weekly well visit, she described him as one of the highest functioning children in the study. Is he going to eventually lose his diagnosis? I doubt it, but I hope and pray he will, if not, I'm prepared to accept it because I love him more than he will ever know or care. At this point, the researchers are giddy because they believe the medication is making all the difference in his behavior. But I know better, it's the AVB, medication and his hard work combined.

2/22/06, 5:02 PM  
Blogger Wade Rankin said...

Joseph,

My description of Ms. Dawson as high-functioning is based primarily on my own assessment of her communication skills. I probably avoid using such terms of art in ways that do not convey the accepted definition, and I can see that it can be confusing to apply that term to someone who still struggles with social deficits.

As for ABA, I must admit to the same confusion as Alexander's Dad. As far as I know, ABA is considered one of the few therapies that is widely accepted as being evidence-based.

That being said, I do not advocate ABA as being appropriate in all cases, nor do I advocate ANY intervention as being advisable for all autistic children. My disagreements with Ms. Dawson are more about whether interventions of one kind or another can be appropriate for some children. I believe that in most cases, autism operates as a disability, and intervention, which might include ABA or a similar therapy, is appropriate to ameliorate dysfunction.

2/22/06, 5:47 PM  
Blogger ballastexistenz said...

I doubt that "social deficits" are what people have in mind when they say that she is not really the picture of a so-called "extremely high functioning" autistic person. ("Social deficits" are, however, what most people have in mind, when they think of "extremely high functioning" autistic people.)

2/22/06, 8:51 PM  
Blogger Brett said...

No one should be forced to act "normal", but the fact is those who don't will always be isolated somewhat from society. If I walk down the street and turn a circle every couple of steps, people are going to avoid me. No one's forcing me to walk a straight line down the sidewalk, but if I don't then I must be willing to accept the consequences.

I agree wholeheartedly that society needs to learn to be more accepting of those who are more than just a little different, but at the same time I think those who choose to be different need to be more accepting of the "normalness" of the world around them and realize that if they want that world to accept them they have to at least make an effort, no matter how small, to "fit in."

Brett

2/22/06, 10:21 PM  
Blogger SquareGirl said...

A great post. I value Ms. Dawson's opinions, yet at the same time continue to say what I've been feeling all along...we all need to find common ground. We need to stop seeing each other as the "enemy". We are on this journey together and if we want acceptance, we must first accept one another.

2/22/06, 11:23 PM  
Anonymous Camille said...

I think it's time you apologized to Ms. Dawson. You have never met her and you have no idea of how well she functions and how great her difficulties with normal demands are.

I have met her. I am somewhat familiar with things that she can't do that I can with great ease or with some difficulty.

If you met her when she was 3 or 4 you would think she had no future, most likely, that she might need to be put away. At various points in her life she has been threatened with being put away.

She's not being coy when she says that her deficits are spectacular. She can speak, at that facility works pretty well for her, but apparently not entirely all the time when she would like it to.

The stories we have today of all the autistics who are in homes etc are stories about people who were assumed to be retarded. Where could these people be today if they were assumed to not be retarded? And where would they be today if society didn't treat them as the worst kind of refuse?

You need to apologize to Ms. Dawson because she wrote in her factum that autism is a disability. You need to apologize to Ms. Dawson for ridiculously misstating her position as written in the factum, and you a lawyer no less.

If you all who love ABA so much would follow the science and what they know from cognitive psychology you'd drop ABA like a hot potato. It is the worst way to teach autistic kids, sure you can teach them with it, it's just the worst way. In fact breaking things down reductionistic style is the worst way to teach disabled kids of all stripes. I learned that in my University of California course on teaching disabled kids in schools. (EDU 115) My professor is a big-shot in the world of special ed in California. He's great.

2/23/06, 12:00 AM  
Anonymous M Dawson said...

For Mr Rankin, with gratitude that you are not my lawyer
http://www.quicktopic.com/27/
H/vJvhV4fDnBgw7/m3527

2/23/06, 2:30 AM  
Anonymous Anonymous said...

Shall we expect apologies from M Dawson for misinterpretation of this discussion?

M Dawson writes:
http://www.quicktopic.com/27/H/vJvhV4fDnBgw7/m3527
-----------------------------------------------------------------
The dishonest and disrespectful Mr Rankin. […]

I abandoned posting on Mr Rankin's blog when I noticed that his
positions were not genuinely or seriously held, nor were they
honestly defended. And here he is, with his true standards and
values ablazing.

After writing me off as an EHFA (a diagnostic category invented
by Mr Rankin, who has not met me, much less diagnosed me), he
dishonestly writes: "I respect Ms. Dawson and agree with much of
what she says. And yet there is so much with which I disagree."

He then proves definitively that if he has bothered to read any
of my work, he is prepared to lie about it.
[…]
Either Mr Rankin has not read the legal position, or even the
first paragraph of the legal position, he links to and claims to
be expert in, or he is lying about it. He is in either case
being fundamentally dishonest, and this is characteristic of his
writing about me and my work. This single example (among so many
others) also exemplifies Mr Rankin's standards and values, and
shows the extent to which his views of my legal position, or any
other position I have taken, should be granted credibility.

2/23/06, 7:56 AM  
Anonymous m dawson said...

Mr Rankin wrote : "If Ms. Dawson has become controversial, it has much to do with her crusade against anything that might smack of labeling autism as a disability. She famously intervened in the Auton case, in which parents went to court to get the British Columbia government to fund ABA for their autistic children."

From the factum of the intervener, Michelle Dawson, in Auton v. AGBC at the Supreme Court of Canada http://www.sentex.net/~nexus23/naa_fac.html

-----------------------------------

Paragraph 1:
The fundamental premise underlying section 15 of the Charter of Rights and Freedoms is that Canadians do not live in a society where disabled persons are obliged to accept passively the judgments and treatments imposed on them for what others perceive as their own good. Canadian society is not supposed to assume that disabled persons cannot participate in or contribute to this society unless they undertake to become or to resemble those whom society does not regard as disabled.

Paragraph 38:
This is all the more so in the case of a disability. This Court dealt with this issue in Eaton, when it stated:

“The principal object of certain of the prohibited grounds is the elimination of discrimination by the attribution of untrue characteristics based on stereotypical attitudes relating to immutable conditions such as race or sex. In the case of disability, this is one of the objectives. The other equally important objective seeks to take into account the true characteristics of this group which act as headwinds to the enjoyment of society's benefits and to accommodate them. Exclusion from the mainstream of society results from the construction of a society based solely on "mainstream" attributes to which disabled persons will never be able to gain access. Whether it is the impossibility of success at a written test for a blind person, or the need for ramp access to a library, the discrimination does not lie in the attribution of untrue characteristics to the disabled individual. The blind person cannot see and the person in a wheelchair needs a ramp. Rather, it is the failure to make reasonable accommodation, to fine-tune society so that its structures and assumptions do not result in the relegation and banishment of disabled persons from participation, which results in discrimination against them.”

Eaton v. Brandt County Board of Education, [1997] 1 S.C.R. 241, at para 67

Paragraph 39:
Ms. Dawson submits that not only do these proceedings attribute untrue characteristics to a whole category of disabled persons, being autistic Canadians, children and adult, but the treatment sought to be imposed is fundamentally inconsistent with the notion of respect for the individual and the duty to accommodate. In fact, the idea that society should accommodate the special needs and characteristics of autistic individuals is entirely absent.

Paragraph 40:
This Court is being asked to endorse a treatment of a disability which denies the autistic population and the individuals whose interests are sought to be advanced in these proceedings, the very human dignity which the Charter is supposed to protect. It makes the assumption that autistic individuals can only be fulfilled (and in fact can only be “human”) if they are moulded to meet society’s expectation of what is “normal”.

----------------------------------

From An Autistic Victory: The True Meaning of the Auton Decision, by Michelle Dawson http://www.sentex.net/~nexus23/naa_vic.html

Paragraph 21:
21. Disabled people do not only need equal benefit of the law. We require its equal protection, including from those intent on agendas involving our remediation, rectification, or eradication. While the overturning of the lower court decisions in Auton does not guarantee autistics will experience equality in Canadian society, it has removed otherwise insurmountable obstacles to us working towards, and eventually achieving, this goal.

Paragraph 67:
The Court’s more fundamental acknowledgment that ABA/IBI is controversial as to its history, nature, claims, and goals serves to protect autistics and all disabled or disadvantaged people. We are always at risk of having non-disabled or non-disadvantaged groups deem us defective and burdensome to society. We are then at risk for being subject, without consent, to arbitrary measures designed to alleviate or eliminate the differences which the majority have decided are worthless and intolerable. We are protected when caution is shown in examining promises that unwanted differences, and unwanted people, can be altered, restricted, or eliminated to the great benefit of society as a whole.

Paragraph 100:
In theory, the mission and methods of the disability community should be at odds with the ABA parents. The ABA parents pathologize, demonize and dehumanize disabled people. They insist that the only way a disabled person can stay out of institutions is to become non-disabled. They market disabled people as an appalling burden on non-disabled people, and state as scientific fact that the only way to alleviate this burden, which threatens to destroy the economy, is to make disabled people non-disabled via extensive, if not perpetual, medical treatment. In court, the ABA parents characterize disabled people as "less than half living". Everywhere in their work is the message that disabled lives are not worth living. Only the non-disabled have real lives and contribute to society. If a disabled person makes any progress, or has any abilities at all, this is always and only due to their "medically necessary" treatment. Further, "progress" in a disabled person always and only means "progress towards being normal". And if a disabled person has achievements that cannot be attributed to a "medically necessary" treatment, then this person must not really be disabled, because, as everyone knows, untreated disabled people just get "worse and worse" and are not good for anything. The ABA parents denounce as ridiculous the possibility of disabled people having a say in their treatment, because disabled people are inherently unqualified to make decisions about themselves. It is ludicrous, according to the ABA parents, that anyone would consider being disabled a valid way to live; and it is criminal to provide the kind of assistance which allows disabled people to succeed as disabled people. For the ABA parents, there is no such thing as a successful disabled person.

Paragraph 101:
The disability community, which has extensively invested itself in Auton, has lost its bearings in autism issues. They fail to see us as human. They are condoning and encouraging views of disabled people utterly poisonous to themselves, because they believe these poisonous views are simply true when applied to autistics. No leader in the disability community, or any kind of leader, would dare make or act on the above statements about disabled people except after first substituting "autistic" for "disabled".

-----------------------------------

2/23/06, 10:14 AM  
Anonymous Anonymous said...

Ah, that’s why you call Mr Rankin ‘dishonest and disrespectful’! Interesting thinking (a bit unethical, though).
Do you consider the following ‘dishonest and disrespectful’ as well?
- Mr Rankin: “Although I disagree with many of these opinions, the intelligence with which she [Ms Dawson] states her views is undeniable”
- “Personally, I have never considered Ms. Dawson an enemy, much less “public enemy number one”… I respect Ms. Dawson and agree with much of what she says. And yet there is so much with which I disagree.”

And cf: A very ‘respectful’ comment from Ms. Dawson: “For Mr Rankin, with gratitude that you are not my lawyer”.

2/23/06, 10:56 AM  
Blogger Wade Rankin said...

Okay, I’m trying to understand which comment I’m supposed to apologize for.

-> “She is well known in the autism world as an extremely high-functioning adult autistic with very strong opinions.”

Ms. Dawson has made no disclaimer to being autistic, but apparently she objects to being described as “extremely high-functioning.” I tried to clarify in an earlier comment that I was not using that language in a diagnostic sense. Rather, it just seems to me, based on my admittedly limited interaction with Ms. Dawson ⎯ and the fact that she is playing a significant role in major research projects ⎯ that she does indeed function at a high level. I understand that she might object to any kind of label whatsoever, and that perhaps is fair criticism. If that is what is so offensive, I certainly apologize for that. But as parents, we tend to use labels to give a thumbnail sketch of how well our kids deal with their disability (to use the word Camille inserted into her comment).

-> “Although I disagree with many of those opinions, the intelligence with which she states her views is undeniable.”

I simply refuse to apologize for calling someone intelligent.

-> “Personally, I have never considered Ms. Dawson an enemy, much less ‘public enemy number one.’ … I respect Ms. Dawson and agree with much of what she says. And yet there is so much with which I disagree.”

On those past occasions that Ms. Dawson left comments at this site, she was treated with respect. What seemed to bother her was that she had to read contrary opinions. That is what happens when one takes part in a public forum. Her lumping together of all parents who dare to disagree with her into a single bloc is every bit as wrong-headed as any stereotype that has been imposed upon her because of her autism.

-> “Even for someone like Ms. Dawson, who has overcome adversity and prejudice to a remarkable extent, making a contribution is not easy.”

Am I giving her too much credit? I don’t think so.

The link to Ms. Dawson’s Factum is in the post. I will leave it up to the reader to formulate whether my comments are fair. Quoting the entire Factum in the body of the post would be absurd since the propriety of ABA is not the point (despite the efforts of some to turn this into a debate of that therapy). Rather, the point is that there is a study that proves our children, in general, are not mentally retarded. Now what do we do with that information.

The fact that autistic children tend to be intelligent does not mean that there is not a disability. The issue must be what should we do about that disability. To the extent the Mottron team may recommend specific action, the outlook and motivations of the team members are relevant. Ms. Dawson, who obviously plays a major role in shaping the team’s output, has made her outlook and motivations clear by her words and actions.

Again, I do not consider Michelle Dawson an enemy. Unfortunately, she chooses to take that role upon herself.

2/23/06, 10:56 AM  
Blogger ballastexistenz said...

Tito Mukhopadhyay writes well and is involved in many major research projects. Yet I don't hear many people calling him "extremely high functioning" on the basis of that.

2/23/06, 11:48 AM  
Blogger Joseph said...

Placebo controlled studies on ABA? What would that be (i.e. what would a ABA placebo be)?

I've heard that argument before, and I don't get it. A placebo can be, simply, a placebo. Randomize two groups, put one in ABA and one on placebo. (Tell the parents its a very good experimental drug). Evaluators should be blind as to treatment.

Other designs of interest are possible, e.g. ABA vs. non-coercive play therapy. (This way, the parents can be blind to method as well).

Correct me if I'm wrong but current ABA studies basically compare ABA vs. a different ABA. I don't doubt that 40-hour-a-week intensive training for 2 to 4 years produces results. But it's relevant to know how much more effective than placebo it is.

No data on immediate adverse effects? Again, I'm not sure I know what you mean. No data on long term adverse effects? How would you prove that ABA caused long term adverse effects?

This is a concern because of parental reports of PTSD. For immediate adverse effects, I think an objective measure of stress would be cortisol levels in urine following treatment. Long-term effects can be measured using psychiatric evaluations after 10 to 15 years. There's some concern with that as well. (Naturally, it would be interesting to know if behavioral gains are kept after that time as well).

2/23/06, 12:00 PM  
Blogger Joseph said...

In the beginning, one of the principal investigators said that my son, and these are her words, "is robustly autistic". Needless to say, I wasn't too happy with this description of him.

As a parent, I truly do understand how you feel. Have you read Don't Mourn For Us and A Place For All?

2/23/06, 12:12 PM  
Blogger Joseph said...

My description of Ms. Dawson as high-functioning is based primarily on my own assessment of her communication skills.

I realize that, and I have to tell you it's a mistake. This is what has been referred to as an over-the-internet diagnosis. I don't believe you've head her speak, have you? If you heard me speak you'd realize that my writing skills are one thing and my speech is quite another. But assuming that autistics can't speak well is still a stereotype. Have you heard Temple Grandin speak? I'm kind of jelaous of her. Interestingly, I'm better described as Asperger whereas Temple Grandin is better described as autistic (based on early childhood development).

2/23/06, 12:17 PM  
Blogger not my blg said...

Wade,

I don't think it does any good to talk to or about Ms. Dawson. She is someone whom insists on being misunderstood and I don't feel nor have I read anything that she has written which has contributed to a better understanding of anything. Rather, Ms. Dawson is much like I was when I was a young man. She takes the contrary view of whatever the discussion is and wants to "intellectually joust." I personally don't view her as someone who has enough flexible thinking to entertain competing ideas and I would suggest she be ignored. A wise person is one who can say that "I don't know everything". Her argumentative style was very similar to mine when younger which is further evidence to me that I am somewhere on the spectrum. I'll give an open invitation to both Camille and Ms. Dawson to come to my home and observe an AVB session with my son and then tell me how it is aversive. I'll even pay for their lodging and airflight.

2/23/06, 12:18 PM  
Blogger Joseph said...

ABA is considered one of the few therapies that is widely accepted as being evidence-based.

Yes, and I struggle with what the reason for that might be. It's no more substantiated that chelation or GFCF. Vitamin B6 and L-carnosine have more solid evidence behind them.

2/23/06, 12:23 PM  
Blogger not my blg said...

Joseph, yes I have read both. Jim Sinclair's piece was especially moving and I agree to some extent with Mr. Sinclair. However, if I have the means (money), it would be foolish of me not to provide services to my child which will help him be more successful. AVB is not about removing autism, it's about enabling my son to be more independent and to give him the tools to navigate our world, just as my parents did for me. I want my son to be an independent and happy autistic person.

2/23/06, 12:27 PM  
Anonymous Anonymous said...

Alexander's Daddy said...

I don't think it does any good to talk to or about Ms. Dawson. She is someone whom insists on being misunderstood and I don't feel nor have I read anything that she has written which has contributed to a better understanding of anything. Rather, Ms. Dawson is much like I was when I was a young man. She takes the contrary view of whatever the discussion is and wants to "intellectually joust." I personally don't view her as someone who has enough flexible thinking to entertain competing ideas and I would suggest she be ignored.
________

Wise words! When I first encountered her writing I thought she was a teenager!

2/23/06, 12:42 PM  
Blogger Joseph said...

I want my son to be an independent and happy autistic person.

We agree. The methodology, which we disagree on, again, is unproven and its adverse effects are unknown. (Camille noted they are pretty serious - I'd be curious as to further insight on this).

2/23/06, 12:46 PM  
Blogger Joseph said...

I don't get all this attacking Michelle Dawson. It's like attacking our own children. Don't you see that, odds are, when our children grow up, they will think much like she does.

2/23/06, 12:48 PM  
Anonymous Anonymous said...

Joseph said...
I don't get all this attacking Michelle Dawson. It's like attacking our own children. Don't you see that, odds are, when our children grow up, they will think much like she does.
_______________

I doubt it. Anyone who starts any arguments with ‘We, autistics,..’ doesn’t understand much about autism. Do you think that she attacks only parents? No. Other autistic individuals are ‘not autistic enough’ for her if they disagree with her. Why don’t you think that our children will think much like Temple Grandin, for example? Who sees early intensive intervention vital for the kids to develop necessary skills and independence.

2/23/06, 1:07 PM  
Blogger Interverbal said...

Joseph,

I am student researcher in the field of autism and behavior analysis and take a stance against "cure". I wish to address some of your comments about autism and ABA.

ABA has a history using the single-case design (different than a case-study). This method uses manipulations of the independent variable and constant ongoing measures of the dependent variable. This method is well respected and such designs are considered well controlled by governing agencies.

This is where the vast majority of our work is done. We have an impressive amount of well controlled studies using this method. I would add that the type of research study depends on the sort of research question.

This is our flag ship journal and all its autism publications to date:

http://seab.envmed.rochester.edu/Queryx.asp?SearchString=autism+OR+autistic&ps=25&Journal=Both&Sort=Year

The problem is that not all the work is in the same direction. Another problem is that some of it has ethical concerns.

You have been correctly told that aversives are no longer a part of autism ABA early intervention. I note that when these things occurred, famously in Lovaas (1987) spanking was also permitted in schools. I am not excusing this, I am putting it in cultural context.

11 US States still permit spanking in schools. In California spanking was outlawed partly because of the writings of Skinner who wrote against such things. Skinner was of course the a famous behavior analyst.

The reports of adverse affects have been reported by CIBRA, the validity to which I can not determine. I am inclined to think they are legitimate however. That said, the procedures used for the harmed children were truly miserable and are example of what not to do in any sort of ABA. I feel those responsible should have been charged.

However, I feel no respect for the creators of that site. They identify me and everyone like me as a “hypocrite” and a member of “a culture of death”. The ethics of such statements are profoundly miserable.

The Institution Review Board requires reporting of adverse events during the course of a study. We do not see PTSD long or short term.

2/23/06, 1:08 PM  
Anonymous m dawson said...

Here is what Mr Rankin calls "respect" and the kind of comment he applauds:

-----------------------------------

YOUR way would PUT him in danger. I don't see YOU doing anything to change that.

[...]

It is a real shame, if it bothers you that I was successful in teaching him, or that he loves to talk. If it bothers you that he is actually ABLE to use his brain in a neurotypical manner in any way, then you have a real chip on your shoulder. Not only that, YOU are a BIGOT, if you think having any neurotypical qualities is bad! Do NOT use your personal experience to justify why ALL autistics should feel the same way as you do. To use your own propaganda (from that website), Don't speak for MY kid.

AND - are you actually saying that any autistic child who can't talk, should NEVER talk because that isn't the way autistics SHOULD communicate? That they HAVE to be totally different BECAUSE they are autistic? Are YOU giving THEM the choice? Doesn't sound like it!

For those who can never be verbal, of course there are other ways, and should be more ways, of enabling them to communicate. I never said there shouldn't. But you have absolutely no right to tell anyone that talking or using language should not be an option! Aren't you writing in English? You ought to get on your knees and thank whoever you want that you CAN do that. That you ARE able to make people all over the world understand what's in your head.

But you are not grateful for that. You are too hung up on what other people thought of you before, that you were "written off".... Bag that, get over yourself, get on with your life. You want respect? HELP other people, YOU teach them, instead of TELLING us what to do with and for our own kids.

You have yet to give us any legitimate information disproving anything, you have yet to answer any of our questions. You see things only one way, which is exactly what you accuse US of doing. That's pretty hypocritical, don't you think? Even a tad bit phony. You may be autistic, but that doesn't excuse bad behavior and poor attitude. If you are going to come on our websites and our blogs, and basically accuse us of being horrible people, of endangering our own kids, you'd better be able to back it up.

-----------------------------------

The context is here http://injectingsense.blogspot.com/2005/11/ms-clark.html And while I have publicly been called "horrible" and much worse, I have not used that language to describe any person.

It isn't that I mind; I'm used to being seriously defamed as well as threatened. It's that arguing at this level, and at the level Mr Rankin is arguing at (he decides who I am and what I've done; if I object, then I am immature and lacking in character) is useless and futile, and by my standards, boring.

On the other hand, I have plenty of time for genuine criticism, without which science is impossible. Science isn't boring at all.

Any journalist who looks around will find that the leadership of the Canadian "autism community" set up a website to disseminate the information that I am a fraud, imposter, criminal, etc. This site is recommended and defended by Autism Society Canada. This and other similar information easily available on the internet and in the media (e.g., letters to The Hill Times) would lead any journalist to believe that I am considered an enemy by the "autism community".

It is not a word I have used, much less a role I have chosen, myself. By saying so, Mr Rankin is asserting that I have chosen to be defamed (or perhaps deserve to be).

I suggest that rather than believe Mr Rankin's rearrangements of reality, that my science, legal position, and other work be consulted. This is all publicly available (except for a few things in press or in revision, which will eventually be).

This can be compared to Mr Rankin's views of my deplorable character, my apparent "choosing" to be defamed, and my "crusade against anything that might smack of labeling autism as a disability". I will never figure out where Mr Rankin got that one from. The problem, he explains, is my lousy motivation.

Okay. That's a signal for me to leave (now it is very clear I'm not welcome here), and allow Mr Rankin to continue to spread whatever false information about me he so wishes. What he believes he can gain from this is beyond me.

2/23/06, 1:14 PM  
Blogger Joseph said...

Why don’t you think that our children will think much like Temple Grandin, for example? Who sees early intensive intervention vital for the kids to develop necessary skills and independence.

It's possible. She also feels drugs are necessary, and that without them she wouldn't be where she is. I disagree with her in some regards. Many people, including NTs, might think that they "need" drugs (sometimes illicit ones) because it feels good to take them, and they don't stop to consider adverse effects.
But maybe she's right, and the benefits she gets from drugs outweigh any adverse effects.

But I digress. In online autistic communities, Temple Grandin's way of thinking is not the norm. The current trend is to think of autism as neurodiversity, a way of being, something you should not be ashamed of or try to "fix". They prefer to demand changes in the world than force changes in themselves. It's really a new kind of identity rights revolution.

2/23/06, 1:18 PM  
Blogger Wade Rankin said...

Joseph,

Let me say that this post was not intended to be a personal attack on Ms. Dawson. Again, however, I think her bias must be taken into account when assigning credibility to the interpretation the Mottron team gives the data they collected. The same is true of researchers on all sides of the various debates, whether we are talking about Baron-Cohen or the Geirs.

Mind you, if I were to have anything personal to say about Ms. Dawson, it would be to point out the hypocrisy of attributing other statements to me ⎯ as she has done above ⎯ while complaining that I have misstated her words.

2/23/06, 1:23 PM  
Blogger Joseph said...

The reports of adverse affects have been reported by CIBRA, the validity to which I can not determine. I am inclined to think they are legitimate however. That said, the procedures used for the harmed children were truly miserable and are example of what not to do in any sort of ABA. I feel those responsible should have been charged.


That said, it continues to be true that no study has measured stress levels of the treated group vs. a random untreated group, and it continues to be true that no 10-year or 15-year psychiatric evaluation followup has been done on similarly randomized groups, correct?

2/23/06, 1:35 PM  
Blogger Joseph said...

I think her bias must be taken into account when assigning credibility to the interpretation the Mottron team gives the data they collected. The same is true of researchers on all sides of the various debates, whether we are talking about Baron-Cohen or the Geirs

True, that's why a well-designed double-blind methodology is always necessary. Work by the Geirs is not even peer reviewed, though, so I wouldn't necessarily put it a the same level.

2/23/06, 2:04 PM  
Blogger Interverbal said...

Hi Joseph,

McEachin, J.J., Smith, T., and Lovaas, O.I. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal of Mental Retardation, 97, 359-72.

It is a follow up on the quasi-experimental Lovaas (1987) which had two control groups (one group receiving part time treatment) the other receiving (no treatment). However, there was no random assignment to groups, thus it only merits the “quasi” status. Also, in this study aversives were the “active” variable and as I said, we don’t do that anymore.

This is a 5-6 year follow up, so it doesn’t meet criteria for the 10-15 year evaluation you asked for. Up to you to decide whether there is merit to it.

You are correct no study on ABA measures biologic makers of stress. This is not surprising, such a measure is not standard.

2/23/06, 2:14 PM  
Anonymous Ian Parker said...

Just as a brief observation, the comment that Ms Dawson quotes below the lines

"Here is what Mr Rankin calls "respect" and the kind of comment he applauds:"

wasn't even written by Wade, but by someone else, and as far as I can quickly determine, Wade didn't reply or refer to it in any way.

Come on Michelle, if you're going to try to damn someone via a quote, meet your readers part way and at least quote the person you're damning.

2/23/06, 4:10 PM  
Anonymous m dawson said...

Mr Rankin wrote: "On those past occasions that Ms. Dawson left comments at this site, she was treated with respect."

Which prompted me to provide an example, complete with a link to its context, of what Mr Rankin is applauding as "respect" on this site. I did not give Mr Rankin authorship of anything but his praise for the respect with which I have been treated on this site.

Thanks, Mr Parker. Nice to see you too. Good day. And apologies for having posted here, where I'm clearly out of my depth.

2/23/06, 4:49 PM  
Anonymous Ian Parker said...

Yes Ms Dawson, but I'd imply from Wade's words that he was talking about respect largely from himself.

It is no more fair to judge Wade by one other commenter than it is for me to judge Kev or BC because in the Autism Science Discussion forum you would continually "attribute both statements and motives" to me "that happen to be non-existent" (something that someone else called you on).

2/23/06, 5:52 PM  
Anonymous Ian Parker said...

The last time I checked the DSM-IV, intelligence was not a factor in making a diagnosis of autism. While it is nice to see that the high rate of MR attributed – incorrectly - to the autistic population is the result of tests that do not accurately measure autistic intelligence, this still does not change the diagnosis itself.

As part of the same AAAS conference in which this finding was highlighted, Dr. Gernsbacher also questioned the idea that autistic people lack a ‘theory of mind’. On her website (which Ms Dawson has previously pointed out elsewhere) she presents some interesting evidence that challenges many of the assumed limitations of autistics. (I love this site, esp. the videos).

So I guess that means that we can all stop worrying about our children and their autism diagnosis? Er, no.

If there were no personal (as distinct from societally imposed) consequences to being autistic then there would be no autism issues other than correcting society’s lack of knowledge and biases (no small task in itself). But as new research begins to challenge some of the myths and misunderstanding of the diagnosis, we’re still left with what for many are an obvious set of personal difficulties that need to be overcome, compensated for, accommodated, or endured. While many autistic adults are willing and able to live with these difficulties, or may not even consider them as such, this does not automatically make those who wish to overcome or at least mitigate them – for themselves or for their children - automatically wrong, unethical, or disrespectful.

I understand (at least I think I do, I’m not sure everyone will credit me this this) why some people in the autistic (and especially the neuro-diversity) community and some researchers oppose specific methodologies, techniques, and practices, e.g. ABA, various bio-medical interventions, chelation, etc. (Note – let’s be clear that I’m not equating ABA with chelation, it’s just that they are both on a list ‘treatments’ that have vocal opponents). Some of their reasoning I agree with, and some I don’t. But what I don’t see is a lot of practical, tangible alternatives being put forth to even mainstream concepts that are being opposed. Not just by the neuro-diversity community, but by researchers too.

To Jonathan Semetko’s great credit (Jon, I hope I’m not misinterpreting you here) he sees ethical issues with some aspects of ABA as it has historically been practiced by some, but is working on ways to implement ABA practices ethically, to provide alternatives and to positively influence the practice of the discipline. I’d suggest that autistics could benefit if there were many more like him.

It is very important that research identify when our children are being incorrectly assessed as MR. It is very important that some of the core deficits of autism may be being misinterpreted and misunderstood. It is very important that word gets out about these findings.

But once this word is out, can someone come up with an ‘ethical’ and ‘respectful’ way to help enable my daughter to learn social and self-care skills? Yes, she is still a valid human being if she doesn’t master all of these skills, and no she is not “doomed” without them. But it will make her life easier and arguably richer when she is not only recognized as intelligent, communicating and empathetic but can also navigate successfully and independently within the wider community, maintain rewarding friendships – and tie her own shoes.

2/23/06, 7:45 PM  
Blogger Kristina Chew said...

I included mention of ABA in my comment (35 comments ago). Following Ian Parker, it is good to see ABA and the early Lovaas studies put into historical context regarding the use of aversives which no program I would place my son in would use. Regarding Joseph's references to "Don't Mourn For Us," these are the kinds of words that we ought all to read as we ought to read those of Frederic Douglass. My sister is undiagnosed Asperger's and she has suffered tremendously in ways very different from my son, but with no less pain to herself and to her body. My parents have looked back at many moments in hers and our childhood and wondered "what if we had" and "what if we had not" and they do not even think about "now what?". In years to come, I will not be surprised if I look back at some of the choices we have made for Charlie and question my judgment with hindsight's luxury.

My husband and I both being academics, we are always more attracted to the theoretical and the philosophical--but we are learning to make our choices for Charlie based on the evidence of observation, of our eyes, of what we see, of what is. And as Plato taught, it is a difficult thing to see beyond the shadows in the cave

2/23/06, 8:34 PM  
Blogger Ralph Smith said...

1. Mr Rankin claims "If Ms. Dawson has become controversial, it has much to do with her crusade against anything that might smack of labeling autism as a disability."

2. Ms Dawson responds with (published) examples of her own repeated reference to autistics as "disabled persons", etc.

3. Mr Rankin responds (to Camille): "Okay, I’m trying to understand which comment I’m supposed to apologize for."

Mr Rankin, please compare 1 & 2.

2/24/06, 12:12 AM  
Blogger Wade Rankin said...

Mr. Smith,

Years before I had an autistic son, I was involved in advocacy for the disabled. I can never recall any instance where someone argued that withholding services to the disabled was the best means of preserving the rights of the disabled. Ms. Dawson's argument is akin to arguing that someone who has lost their legs is not entitled to a wheelchair because it degrades the image of legless people everywhere, and it would be better to have the legless crawl on their bellys than have that which might help. Disability is more than a title that one can brandish when convenient.

2/24/06, 6:24 AM  
Blogger jypsy said...

Ms. Dawson's argument is akin to arguing that someone who has lost their legs is not entitled to a wheelchair because it degrades the image of legless people everywhere, and it would be better to have the legless crawl on their bellys than have that which might help.

With all due respect Wade, you are SO wrong. It appears to me you really don't understand, or you misunderstand, Ms. Dawson greatly if you believe that.

2/24/06, 9:00 AM  
Blogger Joseph said...

If there were no personal (as distinct from societally imposed) consequences to being autistic then there would be no autism issues other than correcting society’s lack of knowledge and biases (no small task in itself). But as new research begins to challenge some of the myths and misunderstanding of the diagnosis, we’re still left with what for many are an obvious set of personal difficulties that need to be overcome, compensated for, accommodated, or endured. While many autistic adults are willing and able to live with these difficulties, or may not even consider them as such, this does not automatically make those who wish to overcome or at least mitigate them – for themselves or for their children - automatically wrong, unethical, or disrespectful.

I kind of see it like Jim Sinclair does. That is, a parent's suffering tends to go well beyond the real practical difficulties involved in raising an autistic child, or any actual suffering experienced by the autistic child as a direct result of the autism.

I could even argue that most of the suffering comes from the brain disorder label. I could give examples of kids who are likely fairly autistic yet never got diagnosed and consequently their parents don't suffer as much. (This has some pros and cons).

Sometimes we like to think of ourselves as martyrs. We're not.

My son, for example, is 4 and quite autistic. Yet, I can see he's a happy and loving child. He probably doesn't care much or at all that he's autistic. Much of the suffering which I suppose he'll experience will not be his fault. It will be because of bullies, or because he's not accepted by a school, or because of demands on him, or because he can't get past job interviews, and so on.

I of course do worry about the one thing I assume most of you worry about: What will happen if my son is unable to support himself and I'm unable to support my son?

Factually speaking, I understand there's some evidence of increased mortality rate among autistic children. But once they reach adulthood, the life expectancy of an autistic person is basically the same as that of an NT. So worrying that my son will just die after he reaches adulthood has no basis in reality. It also appears that as they get older, it's hard to tell the difference between a Kanner autistic and an Asperger autistic. Doctors prefer to err on the side of caution and not provide "false hope", but if you consider the high rate of diagnosis today, it is pretty clear that a good portion of these children will grow up to be self-sufficient adults, and some may even use their gifts and talents in productive ways. (That is, unless their parents discout their potential off-hand and put them in an institution).

2/24/06, 9:17 AM  
Blogger Joseph said...

Ms. Dawson's argument is akin to arguing that someone who has lost their legs is not entitled to a wheelchair because it degrades the image of legless people everywhere, and it would be better to have the legless crawl on their bellys than have that which might help. Disability is more than a title that one can brandish when convenient.

Actually I doubt that's a good analogy. Accomodation through various means (technologically for example) is not opposed. The opposition is to "tormenting" the person. In the case of someone who has lost their legs, a better analogy would be using behavioral training (witholding food and whatnot) in order to train the person to move, perhaps by dragging themselves on the floor with their hands, so that there's no need for the wheelchair - as most normal people don't need wheelchairs.

2/24/06, 10:06 AM  
Anonymous Ian Parker said...

Personally, I don't see myself as suffering (other than from the high cost of IBI). I certainly don't think of myself as a martyr. I can't speak for my wife, but I don't see any suffering related to autism, as distinct from the normal wear and tear of being a parent.

My daughter also does not appear to be suffering. She is a very happy child, quite pleasant to be around, and once she warms up to someone she is very engaging in her own way. I cannot think of a single negative behaviour that she has (I don't consider her stimming - which is relatively mild - as negative, but rather as a self-orientation and communications method). She has health issues, but we finally seem to be getting those under control. From all appearances she is a very hale and hearty (and very tall) little girl.

But, to the extent that she does not learn how to care for herself or navigate successfully in the world she will have personal difficulties that she will have to overcome, compensate for, accommodate, or endure.

Personally, I like another post by Jim Sinclair, especially the last six paragraphs. To quote one of them:

"There is no inherent conflict between accepting and working with autism on one hand, and promoting increased skill development on the other. It is the role of all teachers, counselors, and therapists to promote growth and learning. For professionals working with autistic people, the important issue is that autistic people should be assisted in growing and developing into more capable autistic people, not pushed to become like non-autistic people."

I don't expect IBI to make my daughter non-autistic, or 'disguise' her autism. Neither do her IBI staff. Instead, the focus is on learning, and she is learning relatively quickly. If those who oppose IBI feel it is wrong, then I'm willing to listen, but I need an alternative, because I'm not willing to leave learning to chance. I wouldn't leave it to chance with an NT child, so why should my autistic daughter deserve less?

So, while it is great that researchers are coming closer to understanding what autism 'is', it would ALSO be beneficial if effort could also be spent to figure out the best ways to help autistics learn.

2/24/06, 10:31 AM  
Blogger Doug said...

I'll be the enemy. How should I behave?

2/24/06, 11:12 AM  
Blogger Wade Rankin said...

jypsy,

As always, I appreciate the measured tone of your comments. And any time you come here, I feel I owe you an honest and complete response, although I may risk saying too much.

I cannot claim to know Ms. Dawson very well, and I certainly can’t say what lies in her heart. I can only judge her words, here and posted elsewhere. I really harbor no ill will toward her, although I might have reason. In a past thread, Ms. Dawson accused me of baselessly alleging malpractice on the part of certain doctors. In my profession, we take that kind of accusation seriously; in fact, I made no such accusations of any kind. In this thread, Ms. Dawson accuses me of either making or endorsing disrespectful remarks aimed at her. A simple review of the thread she mentioned shows that I neither made such comments, nor did I imply anything about those comments. (Please keep in mind that I have never moderated or deleted comments, although I would if any of the really offensive posters from any side of the issues showed up and crossed the line.)

I apologize for being blunt in this, but I must be honest about my subjective impression. My admittedly limited contact with Ms. Dawson at this site tells me that she hears what she wants to hear and will respond to that regardless of what is actually said. And when disagreement come her way, she tells us we won’t have Michelle Dawson to kick around anymore, and then tells the media we “make [her] sick” because we say “horrible, disgusting things.” How much of what we said has she actually heard? Put another way, how much of what she heard did we actually say?

Yes, Ms. Dawson admits that autism is a disability, but it seems that when parents want to ameliorate that disability in their own children, she complains that to do so would be an attack on her dignity. (Note: this is my own interpretation of her position. Ms. Dawson has posted her views at other sites and I certainly encourage anyone who is interested to go see what she has to say.)

And the question of dignity and motivation leads me to Joseph’s comment on some parents.

I will not dispute that some parents who strive to (choose one) cure/heal/remediate their child’s autism do so because of their own dreams. But I think that attitude is not as prevalent as some seem to think.

As for myself, I learned from my older children that the only dream worth having as a parent is for the child’s happiness. And I have learned more about love and patience from my autistic son than I would have ever thought possible. I learn more every day.

The love you feel for your child is not different from the love I feel for mine. Although I accept him and love him as he is, I don’t really think the essence of my son and everything I love will change if we are successful in eliminating the dysfunction that is part of the autism package.

If I am doing anything to (choose one) cure/heal/remediate my son’s autism, it is not to satisfy my dreams. It is to enable him to live out his own dreams. One can never know what lies in another’s heart, but I truly believe that the majority of parents who practice interventions do so for the child and not themselves.

As for Joseph’s criticism of my crude analogy to a wheelchair, I must disagree that it is totally off-base. Assistive technology can help an autistic person communicate. But I am of aware of any technology that can assist a person to know when and what to communicate. Although I make it a practice to never discuss specifics, I can’t think of anything my wife and I have done that would qualify as “tormenting” our son.

Finally, to Doug. I’m not sure to whom you wish to be an enemy, and I really have no wish to tell you how to behave. Perhaps if you would just be yourself, someone might come to your rescue and volunteer to be your enemy. Then again, maybe you might find that the only people around here that have enemies are those who want them. Or was that your point?

2/24/06, 12:57 PM  
Blogger Anne said...

Wade: The services offered to people with developmental disabilities are not all created equal. Some are ineffective, abusive, or both. You could visit some special education schools or residential placement facilities and find them providing services that are life-threatening and would indeed qualify as torture.

As I understand it, Michelle Dawson's position is that autistic people are entitled to services that are both effective and ethical, and are also entitled to self-determination as to what services they get.

Although I don't think you would disagree with these ideas in the abstract, you have a problem when they are actually applied to a particular service, because that seems judgmental to you. So maybe you would be uncomfortable criticizing the practices of the notorious Judge Rotenberg Center because some parents have made the decision that these services are best for their kids. But other people are willing to speak out against places like this.

One might just as well give your hypothetical legless people poorly designed wheelchairs that don't work and are painful to sit in, and then criticize anybody who objects as wanting to take away their services and make them crawl on their bellies.

Ian: you said "... it would ALSO be beneficial if effort could also be spent to figure out the best ways to help autistics learn." This, as I understand it, is what Michelle Dawson is working on, and the results of her work form part of the basis for her criticism of the intervention program involved in the Auton case. Wade criticizes Michelle for concentrating on autistic cognition, but somebody has to do that in order to develop more effective teaching methods. Although there is more to life than cognition and learning, the study of these areas is a major undertaking and an important component of figuring out what services should be offered, and I wouldn't criticize a person for concentrating his or her efforts in that area.

2/24/06, 3:54 PM  
Blogger Estee Klar-Wolfond said...

I think it will be hard to garner a middle ground for a long time to come. I think of other "rights" that have been fought for throughout history -- the heat, the dissention, the work, the debate -- until equal rights was achieved.

Thanks for this post which elaborates on the Globe article (I posted it too). Moreover, thanks to you and Michelle for your online debate which I find very enlightening in this quest.

Estee

2/24/06, 4:41 PM  
Blogger Wade Rankin said...

Anne,

I have no problem at all criticizing the use of aversives as the Rotenberg Center describes them, regardless of whether the parents agree. There will always be a bright line upon which the majority of us can agree, and what amounts to shock therapy seems to me to be crossing that line. But the therapy sought by the parents in the Auton matter does not cross that line. Again, I neither advocate nor condemn ABA. Undeniably, however, it meets that “evidence based” standard that supposedly is lacking from many of the other therapies that are used.

As far as criticizing Ms. Dawson’s “for concentrating on autistic cognition,” I can only say that was not my intention. If I created any such impression, than I certainly will apologize for that. Indeed, I applaud Ms. Dawson’s participation in this important research, and I certainly hope it leads to a better understanding of the problem. My only criticism addresses the stated motives ascribed to Ms. Dawson, and I worry that her motivations may cloud the team’s judgment when it comes to recommending any particular actions stemming from their findings.

I am most interested in your assessment that Ms. Dawson’s “position is that autistic people are entitled to services that are both effective and ethical.” I’m not sure I’ve ever seen any particular services that she approves of. I’m not trying to be flippant. This is probably ignorance on my part, as I cannot claim to have read every single thing she has ever posted. In fairness to Ms. Dawson, I would appreciate any citations you can post here to any interventions she feels to be “effective and ethical.”

As always, Anne, thanks for adding something to the discussion.

2/24/06, 4:46 PM  
Blogger ballastexistenz said...

Wade wrote:

And when disagreement come her way, she tells us we won’t have Michelle Dawson to kick around anymore, and then tells the media we “make [her] sick” because we say “horrible, disgusting things.” How much of what we said has she actually heard? Put another way, how much of what she heard did we actually say?

If you truly haven't said these things, then I'm not sure why you'd object to unnamed parent groups who have said those things being described as having said them.

I have read some of the things that members of various lobbying groups have said about autistic people. The things they have said are demeaning and disgusting. Being sickened by them is a normal response if you haven't been desensitized to the way some disabled people (including autistic people) are described.

The things run something like (I'm doing this from memory, but things very like this have been said by major autism organizations) "Autism is worse than cancer because with autism you have a normal lifespan," "Autistic people are dead souls in live bodies," "Autism is like having your child's mind and personality kidnapped and his bewildered body left behind," "Autism is worse than cancer, AIDS, and 9/11 combined," comparisons of autism to various disasters and terrorist acts, and so forth.

What confuses me is, if you truly haven't said these things (and I don't know who you are, so I don't know if you have or not), why are you offended that she is sickened by them? If you truly haven't said these things, why do you think she's talking about you? Certainly when I read her statement, I thought of the sort of disgusting statements I chronicle in Autism Demonized. I did not think, "Gee, she's attacking Wade Rankin."

2/24/06, 5:18 PM  
Blogger Doug said...

That was my point, Wade. For those who need enemies, I'm available although they'll have to tell me which side of what issue I'm on.

I'm hoping it will help those who are looking for a cure to find one and those who offer therapies to do their best and those who want autism to be seen as a valid alternative paradigm to neurotypical behavior can make their case.

I'm pretty good enemy material, for those interested. I'm a portly, neurotypical purveyor of services to people with developmental disabilities. Lots to loathe.

I guess a less flippant way of saying this is that whether finding cures or remedies or acceptance for people with autism is the goal, the whole community should wish each other well.

2/24/06, 5:53 PM  
Anonymous Ian Parker said...

Doug, if you really want to be an enemy then I'd recommend a Teletubbies suit and endless repetition of their songs in the characters' voices.

There's a reason why Teletubbies DVDs don't have a "Play Continuously" option...

2/24/06, 6:50 PM  
Blogger Interverbal said...

Hi Ian,

Correct,

I firmly wish to do/research techniques that are ethical and reinforcing. I would like to be a good educator and help others to do so via my research.

Part of this includes my learning humility of what I (as a behavior analyst) can and can not do. Or maybe, should or should not do.

I think a good few behavior analysts feel the same way. I am more militant about it than most, though.

I have no idea whether what I (will) do has any value to autistics. I value good critics of my behavior for that reason.

2/24/06, 9:22 PM  
Anonymous Fed up in California said...

here's the ABA version, Mr Rankin,

First, Say:

"I was wrong." (in a high pitched goody goody voice I say - Good boy, Mr. Rankin, here's a special blue m&m for you !!!)

Now,

Say:

"I should not have written that you say autism is not a disability."
(pause)
(pause)

Go ahead, you can do it, Say, "I"

now say, "should" (gooooood booooy!!!! here's a red m&m for you, pat pat)

...
So after our on our lesson in VB you should be able to write this.

"Dear Michelle,


I don't know how I could have made such an incredible mistake as to write that you say that autism is not a disability in the context of discussing your factum wherein you plainly say that autism is a disability. I'm sorry for playing lawyerish word games. Sorry from the bottom of my heart."

I guess it doesn't matter that autistics report that they don't like being treated like Skinner's pigeons or worse. I guess it doesn't matter that science says that ABA is the worst way for a kid to learn. I guess it doesn't matter that a bigwig in California special ed says the ABA style learning (reductionism) is the worst way to teach any kid. I guess it doesn't matter that the child become a subject and an object of manipulation in careful steps. No. I guess it doesn't matter.

I think you have very nice manners Mr. Rankin and that you don't care who you hurt with your nice manners, so long as you have nice manners. I guess I need to work on my manners. Maybe I can be ABA'd out of being honest.


The whole point of this is that you don't like it that Michelle and Mottron's work proves that autistics are far less disabled that you think.

How can you link all this autistic intelligence to mercury poisoning??? All the ambulence chasers are scrambling for how to spin this one in court, right??

Which logically means that Michelle is a pharmco shill, right?

Aren't you supposed to go over to hatingautism.blogspot.com and accuse JB Jr of being a homophobe? I think it's your cue.

2/24/06, 11:11 PM  
Blogger Wade Rankin said...

Ah my dear "Fed Up,"

I think a perfect example of word games would be to claim a disability but to argue that an evidence-based therapy is wrong because it is demeaning.

Now, once again since you seem to have ignored me when I said it before (hmmm, that kind of reminds me of someone, but ... nah), I am not particularly an advocate of ABA. But the fact remains that it is widely regarded as an effective therapy, one california professor notwithstanding.

I must take issue with your statement that I "don't like it that Michelle and Mottron's work proves that autistics are far less disabled that [I] think." Please correct me if I'm wrong (and I'm sure you will correct me even if I'm right), but the Mottron study does not touch on "disability" so much as it merely says that autistics tend to be highly intelligent. I don't disagree with that finding. Indeed, it confirms what I know to be the truth: that my disabled son is highly intelligent.

I'm really not sure where you're going with the ambulance chaser crap and spinning something in court, or the odd little comment about Ms. Dawson being a shill. I don't see how this fits at all, since I have said on MANY occasions (but again, that would require that you actually have read what I have to say) that I believe the causation issue is much larger than mercury. And I'm not sure how a finding that autistic children are intelligent would have any impact on the legal question of causation. But perhaps you should address that to a lawyer who's actually involved in thimerosal litigation, a group that doesn't include me.

I also need to point out -- again to save you the trouble of reading what I have written inn the past -- that the only person I have ever come close to calling a shill for the pharmaceutical industry has been Paul Offit, and I really haven't put that label on him. I'm really not sure why anyone would accuse Ms. Dawson of that. Does she advocate the use of prescription drugs for autism? If she does, it is news to me.

Finally, I'm not sure why I need to go to Mr. Best's blog. It's not one I regularly read.

I hope I'm not being too impolite for you, "Fed Up." I'd hate to have to listen to demands that I apologize to you too.

2/24/06, 11:51 PM  
Blogger Estee Klar-Wolfond said...

I'm with Camille on this one.

Estee

2/25/06, 8:04 AM  
Anonymous Ian Parker said...

How about an alternate wording:

"If Ms. Dawson has become controversial, it has much to do with her crusade against anything that might smack of labeling autism as a disability requiring treatment."

In this interpretation I would suggest that OT and PT could be seen as treatments for co-morbidities (i.e. non-DSM-IV issues that many but by no means all autistics share). I'm not sure of Ms Dawson's views on OT and PT but I do seem to recall Ms Clark endorsing at least some aspects of both (I'm assuming when no DTT-like techniques are used). I'm not sure where speech therapy would fit?

2/25/06, 11:12 AM  
Anonymous kyra said...

thanks for this great post. i, too, don't view Ms. Dawson as an enemy. it's sad to me that she might view me as one. i'm wondering if some of what makes her so intense might be a response to how hard navigating the social scene might be? might she be a bit angry that this is hard for her? does any part of her wish her spectacular deficits could be lessened somewhat? bring her into more balance? not to take away any of her obvious brilliance or unique perspective.

2/25/06, 11:43 AM  
Blogger ballastexistenz said...

The idea that she is "intense" because she needs to have various parts of autism ameliorated, is (to use the continuing physical-disability analogy) like saying that wheelchair users who can't get into badly designed buildings or onto badly designed buses are "intense" because they can't walk and need to be able to walk, or like people with intellectual disabilities trying to get their right to live in their own homes without being put in institutions are "intense" because if they were "smarter" then they wouldn't "need" to live in those places.

Continually facing injustice tends to make a person either fairly passive or fairly intense, and the solution to injustice is not to "fix" (and psychologically dissect, and so forth, looking for hidden reasons that who they are is the real reason that they feel that way, rather than how they are treated) the person who's being harmed by it.

2/25/06, 1:30 PM  
Anonymous Fed up in California said...

Mr. Rankin,

Your blog post says that Michelle says that autism is not a disability. That's a gross misrepresentation.

You need to retract it or look like a liar.

That's what I think

It's not just one professor in California who says ABA is the worst way to teach autistic kids. The professor in California says it's the worst way to teach all disabled kids, by the way.

Still waiting for you to retract you misrepresentative statement.

Mr. Rankin, most autistics need therapy and education, Mr. Rankin. They need the best therapy available. ABA is junk. It's not the best available therapy/education available.

Autism is a disability. It's just not a disease caused by vaccines. Sorry.

The lawyers will want to show massive devastation done by those eviiiiil thimerosal manufacturers and anyone else with deep pockets. They can't show that mercury poisoning confers special gifts that are shown in the Raven's tests.

The EoH-ers were horrified at the story about the successful autistic teen who shot 20 points at a basketball game. They can see their big lawsuit jackpots slipping away with every positive story about autism. I'm surprised that you as a lawyer wouldn't see how obvious the "keep them devastated exept when we can prove the chelation cure them" is among your friends in the mercury/autism gang.

Michelle is not and was not a victim of mercury poisoning, so she needs to be shut up lest she detract from the carefully managed impression doled out by Kirby and the rest that autism is only a living hell featuring massive amounts of scalding diarrhea.

Good day, Mr. Rankin. Adios.

2/25/06, 6:38 PM  
Anonymous fed up with fed up said...

fed up said:

"They can see their big lawsuit jackpots slipping away with every positive story about autism".

- Right... because everyone who believes that thimerosal may trigger autism is only in it for the money. Sure, Fed up... Try again.

2/25/06, 6:56 PM  
Blogger Wade Rankin said...

Okay Fed Up in Cal,

We now know that you think that "most autistics need therapy and education," but you aren't terribly specific about what therapy you feel is appropriate. (And please, EVERY child, autistic and NT alike, need education.) Apart from wanting equal access to an education, which I wholeheartedly agree with, can you -- or anyone else -- tell me what therapy Ms. Dawson approves of, or that you approve of for that matter.

Please don't tell me something nonspecific like "speech therapy." That does a little -- but only a little -- to make an autistic child's life a little better.

Since I'm not involved in any vaccine litigation, I couldn't tell you if this study will have an impact, but I really don't see how. Had you actually read what I wrote (how's that for irony given your accusations?), you would see that I agree with the basic finding. Hell, the title of the post begins with the phrase "our children are smart." Unfortunately, intelligence does not negate disability. If it did, there would be no purpose for this blog.

2/25/06, 7:33 PM  
Blogger ballastexistenz said...

From what I have seen of Michelle's research, she would probably say that education that involves implicit learning is more in line with how we actually think and learn, than the kinds of learning that we are usually put through (that impede implicit learning). (For an explanation in English of implicit learning -- although I think I finally have the concept -- you'd probably have to go to her.)

I can see how to apply that to most particular real lives, but it is a sort of starting principle, it is not specific because it can't be totally specific. (Anything that can has problems.)

2/25/06, 7:43 PM  
Blogger Wade Rankin said...

Thank you ballastexistenz. I'm only slightly familiar with what you're describing, but it's a start. Assuming you're correct in thinking Ms. Dawson would approve of some form of implicit learning, and that would certainly seem logical, I have to say I have no problem with that -- as a start. I really don't know many specifics about implicit learning beyod a few basic principles. Moreover, I really don't know whether it can be effective at promoting basic living and coping skills. If anyone can point me to any good information online, I'd be very interested.

And while I'm here, let me just say I did not mean to say anything negative about speech therapy. Our speech therapists have been an important and integral part of treating our son; I only meant that I needed something a little more specific designed for problems associated with autism.

2/25/06, 8:06 PM  
Anonymous María Luján said...

Hi Wade
About implicit learning ideas from Mrs Dawson and Dr Mottron work, I have just sent to you near 12 manuscripts in english Dr Mottron sent to me upon request (a really very nice gesture from him). Extremely interesting work. I have also 4 papers from him in French that perhaps you can be interested on.
I am really sorry that Mrs Dawson- or even some parents in the neurodiversity- think that for many of us, parents with children under biomedical with a moderate position , she/they is/are an "enemy". I hope we can construct sometime in the near future another place of discussion where the actual level of anger, mutual distrust and misunderstanding is going to be replaced with a more empathic and different consideration of diversity, in this case of opinions.
In my personal belief, and please I do not want to offend anyone, my son is genetically different AND HAS also a lot of comorbilities I have the duty to treat. In this sense is a disability as the results of many components and I accept that many of them can be unknown. But very unique as such. I do think that he has special needs in education, speech therapy and learning. Because every year we know more about how ASD children learn I hope that in the future more individually designed approaches are going to arise. At an individualized level for me, the best approach has been an structured-but flexible, an open minded but also ruled ambient with clear limits, tons of love and support from family, understanding of behaviors, inconditional love AND treatment of comorbilities.
You can embrace and accept and love profoundly your autistic child with acceptance and still look at autism as a syndrome and a disability with special and unique characteristics that are not easy to live with. To be a parent has involved for me the acceptance of the perfect or not so perfect child I could have-before my children were born. For me it is my duty to give him what he needs as therapy-and I must be aware that perhaps is not what I think he needs but I only can do my best.In this process of mental, emotional and spiritual evolution that has become to understand what is autism in your child- and do the best decisions for him in terms of therapy ,living with them because of the lack of knowledge about ASD-you are left almost alone to reach these conclussions.
María Luján

2/25/06, 9:16 PM  
Blogger Wade Rankin said...

Thanks to both Maria and to Dr. Mottron. I will read the papers (well, at least the ones in English). maybe we can take this discussion in another direction.

2/25/06, 10:02 PM  
Blogger Joseph said...

If I am doing anything to (choose one) cure/heal/remediate my son’s autism, it is not to satisfy my dreams. It is to enable him to live out his own dreams.

I can understand this. But I also understand the other side, as an Aspie. If my parents had "cured" me (fortunately at the time my way of being was just considered a little odd, not a brain disorder) I probably would not be able to pursue my dreams. They would be totally different dreams most likely.

This has nothing to do with ABA, however. No autistic that I know of thinks of ABA as a real cure that alters your way of being. The opposition to ABA is not because of that.

2/27/06, 3:28 PM  
Blogger Joseph said...

I did not mean to say anything negative about speech therapy. Our speech therapists have been an important and integral part of treating our son

I'm probably repeating myself, but with speech therapy I also believe there's not one study that shows it produces results. (BTW, my son does do speech therapy on my wife's insistence, and just so that he's doing a kind of academic activity, as he cannot be mainstreamed at the moment).

2/27/06, 3:34 PM  
Blogger Joseph said...

And I'm not sure how a finding that autistic children are intelligent would have any impact on the legal question of causation.

Findings such as this, i.e. strengths not just weaknesses, along with findings of significant neuroanatomical differences, are more consistent with a 'genetic difference' view than with a 'environmental insult' view. That seems pretty obvious to me.

2/27/06, 3:43 PM  
Blogger Joseph said...

i, too, don't view Ms. Dawson as an enemy. it's sad to me that she might view me as one. i'm wondering if some of what makes her so intense might be a response to how hard navigating the social scene might be? might she be a bit angry that this is hard for her?

First, has M. Dawson used the word 'enemy'?

Second, attributing a disagreement to pathology is something I find appalling. This is no different to John (hatingautism.blogspot.com) calling everyone who disagrees with him "mercury poisoned". If I were to use that tactic, I'd say it's demonstrably true that NTs lie more often that autistics, so therefore you must all be lying, and your disagreeing with my arguments can be explained because you're all liers.

2/27/06, 3:54 PM  
Anonymous Anonymous said...

The problem with ABA is that it solely focuses on behavior, and doesn't try to understand the human's thought processes. By only conditioning them against behaviors you are giving them the wrong reason as to why or why not to do something. And the reason is critical. When people do things for a reason that reason is a precedent and it will be applied to various other behaviors in other situations throughout their life. If that reason/precedent is incorrect so will the future behavior, even if the reason/precedent leads to desireable behavior in the present. If the kid understands the reason then in time they may notice the reason applies to other things too. If you just teach the kid "don't do that, because I said so" or "don't do that because that one time you didn't you got lots of rewards" doesn't really teach the kid anything of use at all. Maybe the kid could become a useful drone someday, but when we have these gifts why not aim for something more substantial.

And to really understand your kid you need to understand his thoughts. Sit down and let him say or write what ever needs to be said/written once in a while. Let him ramble to his heart's content and allow him to pause to process his thoughts into speech without fear of interruption, and let him know the full plan ahead of time so he's not sitting there anxiously worried he'll get interrupted if he pauses to translate too long.

And ABA is often excessive, going after non-problem behaviors. I read something from one parent saying they were trying to establish the correct pencil grip. I am a senior in a highly esteemed degree program at a a highly esteemed college. I have Asperger's. AND I still don't hold my pencil "normal" and have no plans to try to alter my pencil grip. How do you expect your kids to succeed when you worry about non-problem behaviors? 1. It takes away attention from real problem behaviors. 2. It sends the message that behavior is a problem solely because it is different. No child will be emotionally healthy if they are taught they can't have an individual identity.

Why do you want normal children anyways? Why not encourage your kid to be the absolute best of what ever they are interested in? And the more prized their skills are the less of a problem they will have with the social aspect, because they will be considered needed and more will be forgiven. That's what I want to do, hone my skills and I can get away with a lot more(and make a lot more) than if I tried aiming for a completely ordinary line of work.

10/7/11, 10:02 PM  

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