Thursday, February 15, 2007

Autism, a blight on society

In the House of Commons late last year, Liberal MP Blair Wilson made this statement re autistic children and "medically necessary" ABA/IBI:

For the child's humanity, treatment is necessary.

Then he said:

It is time Canada took action against autism, a blight on society. We must support this bill.

To ensure that no one has any cause to wonder if this was really what Mr Wilson meant to say, Mr Wilson highlighted this statement on his website--in large, bold letters:

It is time Canada took action against autism, a blight on society. We must support this bill.

"This bill" is Prince Edward Island Liberal MP Shawn Murphy's private member's bill C-304. This bill's main purpose is to alter the Canada Health Act to single out autism as a disease for which ABA/IBI is prescribed and mandated as "medically necessary" treatment. This bill has the effect of legislating physician-equivalent status for behaviour analysts, of legislating ABA/IBI as "medically necessary" for those diagnosed with Rett's, and of legislating all autistics as not only sick but "suffering". This will be the law. But back to Mr Wilson.

According to Mr Wilson, autistics who have not had "medically necessary" ABA/IBI from very early in life--in order to stop us from blighting society--have no humanity. Most autistics in Canada have not had ABA/IBI from an early age, for many reasons, including that we are too old. We grew up before ABA/IBI was easily or at all available. There are very likely at least 150,000 autistics in Canada who have not had early and unlimited ABA/IBI. That number exceeds the entire population of Prince Edward Island, including Shawn Murphy. Mr Wilson has stated that a group of Canadians more numerous than all Prince Edward Islanders do not have humanity and are therefore not human.

When I spoke with Mr Wilson's office, these statements of Mr Wilson's were vigorously defended. They are true, I was told, because FEAT says so.

FEAT--Families for Early Autism Treatment--recently stated in the Globe and Mail that autistics who do not undergo unlimited "medically necessary" ABA/IBI starting early in life must be institutionalized by the time we reach adolescence. We must live in restraints and have our teeth pulled.

The ethicist Margaret Somerville--who was not aware of FEAT's prominent recommendations--has recently written in the Globe and Mail,

May we redesign disabled people to make them easier to care for? They used to take out all the teeth of mentally ill people so they couldn't bite their caregivers, but we are rightly appalled by that now.

But no one is appalled or even raises an eyebrow when it is recommended that most autistics in Canada (a population larger than that of Prince Edward Island, including Shawn Murphy) be abused this way. Certainly not Mr Wilson, who forcefully supports and promotes FEAT. Mr Wilson has used his full power and influence to inform Canadians that most autistics in Canada are, unlike criminals and terrorists, not even human. We have no humanity. Those who are not human have no human rights. And those who have no human rights can be grossly abused with impunity. This is an experience shared by many of us.

Other Liberal MPs have had additional ideas about how to write off autistic Canadians who they see as blighting the country.

Ruby Dhalla has stated the Liberal Party of Canada position--a position shared by the Conservative government and the NDP--that ideally there would be no autistic people at all in Canada. In order to sensationally raise alarm about a "shocking" autism "epidemic", she has also rejected the broad scientific consensus that there has been a high, stable rate of autism. Instead, she insists that in 1996 and before, there were only 1 in 10,000 autistics. She and her office have repeatedly claimed that this figure, forcefully promoted by FEAT, is true, and further, that it comes from multiple expert researchers. Her "expert" autism epidemiology, a work of pure and absurd anti-scientific fiction, has the effect of eliminating the existence of more than 150,000 autistic Canadians--more than the entire population of Prince Edward Island, including Shawn Murphy. But Ms Dhalla does not care. She is sticking to her guns. She does not want most autistics in Canada to get any services at all, or even to be acknowledged. We don't exist--because she says so.

The supposed "debate" about Shawn Murphy's bill C-304 resumed yesterday. In this "debate", Liberal MP Brian Murphy stated that autism is

no less detrimental than the diagnosis of terminal cancer

and is therefore fatal if not treated. According to Brian Murphy, most autistic people in Canada are dead. We have not had the one "medically necessary" treatment he claims with absolute certainty is the only way to save us from our terminal disease.

The above statements represent the major achievements of autism advocacy in Canada. Autistics have officially been declared diseased, a blight on society, subhuman, actually and ideally non-existent, and dead. The organizations and individuals applauded for representing us demand that we be institutionalized, be kept in restraints, and be permanently mutilated if we don't sufficiently become normal. Not one of our federal parties, not one Canadian MP or Senator, has expressed even a whisper of protest against any of this.

Canada is officially a country which hates autism, and therefore hates the existence of autistic people. No fact will be permitted to get in the way of this hideous and irrational hatred. No genuine debate about autism, no genuine assistance for autistic Canadians, can emerge from this gratuitous, dangerous and unopposed outpouring of denigration and dehumanization.


Unknown said...

Ms. Dawson

It is unfortunate that you continue your unrelenting attacks on any person or any organization who actually tries to improve the lives of autistic persons in Canada.

Mr. Murphy spoke of the need for ABA intervention to help treat and educate people with autism disorder. And the need for government funding to ensure the availability of such help across Canada.

Your mis-characterization of such efforts helps no one.

Harold Doherty

Michelle Dawson said...

Hi Mr Doherty,

I am always careful to link to original sources, so that all statements made can be checked against the record. The words of autism advocates speak for and characterize themselves.

You may choose to believe that it helps autistics to deny that most of us exist (so that we cannot get even minimal services), to call us a blight on society, to deny our humanity, to insist that autism is a terminal illness, to recommend that we be institutionalized and abused (kept in restraints, our teeth pulled). But you should not be surprised that not everyone will agree with such extreme and unethical (see Dr Somerville's statements) views.

Anonymous said...

The problem is that to people like Mr. Wilson (and I presume Mr. Doherty too) referring to autism as a blight or to autistics as devoid of humanity is seen as helpful to autistics. I think it could be a Theory of Mind (ToM) issue, and I'm only half kidding. They fail to put themselves in the shoes of autistic people and thus realize what an autistic person must feel when such language is used.

Anonymous said...

I can't believe someone stooped again to the cancer-autism analogy! Why doesn't anyone listen when autistic people say this sort of language is offensive?-and then stop doing it! I have read blogs and articles by many autistic people who find these flagrant portrayals offensive-if you give a hoot about what autistic people have to say about themselves then you would know that this fight to eradicate autism isn't theirs. I would think it would be the role of autism advocates to defend against this sort of denigration actually. Anyway...It is certainly a Theory of Mind issue, all jokes aside! These so called autism advocates (who oddly see themselves as the stakeholders in this over autistic people themselves!)really do think that the language they use has no negative affect on autistic people.

Even if I believed that ABA/IBI was a universal blessing for autistic people, I still hold that the stigma caused by negative language about autism will hurt all autistic people. In fact I think it hurts their chances in society more than aba/ibi can possibly ever help them.

Club 166 said...

I just wish that there was a little bit more respect, common sense, and common courtesy.

Language IS important, and when autistics feel denigrated by the way things are framed, then why is it such a big deal to reframe the argument? There is nothing lost by acknowledgeing the basic human dignity we all have, and working from there to develop all citizens to their full potential.

Adult autistics and parents of child autistics are BOTH stakeholders in what happens politically and socially with regards to autism. The family is the basic unit in society, and it is the family that supplies the bulk of support when society as a whole fails.

Trying to make one side "lose" lessens both sides. It will take the strength and efforts of ALL stakeholders working towards common goals to achieve significant results.

Politicians just love it when there is internal strife amongst "special interest" groups. It assures that they can sit back, hold hearings, pass a few meaningless measures and call it a day. When asked why they don't do more, they respond that the groups involved can't even agree on what's needed. So they're doing "the best that they can" after "listening to all sides".

Anonymous said...

Mr Doherty,
whatever you think of ABA, what do you think of the language being used by its advocates in an effort to get mandatory funding? Do you think this hate talk is making life easier for autistic Canadians? Consider these words from an autistic teen in the UK, published on the website of the National Autistic Society,
”We are not born to suffer. We are born to thrive. If you live in a dry area and your garden receives little water, you plant plants which like dry soil. But when you are given a plant that likes wet soil, you don’t kill it, you water it, you spend one of your 1440 minutes each day watering that plant. Because you know, that given the right care, that little bit of effort can produce spectacular blooms. And so it should be with children like us.”
He has never had medically necessary ABA. Is he a blight on society, doomed to institutional care? Is Michelle Dawson?

That same web page I referred to, which is addressed to the parents of newly diagnosed children, ends with these words,

"Although this page has been written primarily for the parents of newly-diagnosed children, it may be helpful to note the viewpoints of some adults with autistic spectrum disorders. There is a growing movement amongst autism activists who don’t think in terms of ‘curing’ a ‘disorder’ but instead of celebrating difference. Please take time to read their viewpoints below."

One of the links is to Don't Mourn for Us by Jim Sinclair. I commend it to you.

Jannalou said...

And there is still time; the vote will be called next Wednesday.

If you're Canadian (especially then!), please visit this page and read it all the way through before forming a final opinion one way or the other.

It's not about making one side lose; everyone wants what's best for autistic people. We just have different ideas about what's best, and the fact that autistic people are not being consulted about things that will, logically, impact their lives is preposterous.

I want this bill defeated so that a better one can be introduced. One that actually acknowledges the existence of autistic adults and provides for their support.

Maybe if parents weren't made to believe that their autistic children will someday have to be institutionalized, there wouldn't be this ridiculous panic and push to eradicate something that is not a death sentence.

Anne said...

Harold, if you are trying to help somebody, and they are not appreciative, then I think it is wise to take a look at the nature of the help. Good intentions are important, but not sufficient.

Anonymous said...

>Your mis-characterization of such efforts helps no one.<

I think the boot's on the other foot. I have no idea why you will not take this hate speech to its logical conclusion. Maintaining the fiction that without a largely despised (outside of behaviourist circles)therapy, a specific population is doomed is going to have exactly the effects that Michelle is pointing to and you keep trying to sweep under the rug.

Harold, hate speech is harmful. You can't use it in a good cause - the oldest fallacy in the book.

David N. Andrews M. Ed., C. P. S. E. said...

"Harold, hate speech is harmful. You can't use it in a good cause - the oldest fallacy in the book."

I don't think Harold cares about that. He's just out to make sure that Michelle gets blamed for kids not talking or doing things.

As Club166 implies, he's a politician's dream come true. He gives a lot of crap out and they don't have to do anything.

Anonymous said...

I have met many Feat parents. They all love their children would never ever consider them a blight on society. They are trying to have autism included into Medicare. That way they can be prescribed science based treatment by their doctors. These people want only the very best for their children and have given freely years and years of their lives to fight for this. Shame Shame on all you who should understand but only condem You are the one's hurting these children.

Anonymous said...

I totally agree with Harold. Feat has never ever said autism is a terminal illness. They have never recommended that their children be institutionalized or abused.That is the very thing they are fighting against. Are you so blind so bitter and full of rage that you can not see or understand that

Jennifer said...


I, too, have met many parents who are in favor of prescribed-by-a-doctor-ABA as well. The problem is that those parents have been sold a bill of goods. There is no solid scientific evidence for the claims that those parents believe. Do you, personally believe any of the following?

1. ABA/IBI is an effective cure for autism, resulting in many (~50%) of children completely losing their diagnosis and becoming indistinguishable from "normal" children.
2. Several peer reviewed studies appear in the scientific literature showing that 47% of autistic children treated with ABA/IBI lose their diagnosis of autism
3. 90% of children diagnosed with any form of ASD (including Asperger's) will be institutionalized without ABA treatment.
4. Scientific studies exist showing that children who have been "recovered" with ABA maintain those gains as adults.

All of these statements are demonstrably false, yet all are raised by autism advocates in their efforts to get ABA into medicare.

Michelle Dawson said...

Hi Anonymous,

FEAT's statements and actions are on the record, in the Globe and Mail, in other media statements, on their website, in their press releases, in the Auton trial and appeal decisions, etc. FEAT's statements and actions are all easily verifiable.

You are free to claim that I fabricated it all, but this will not do much for your credibility. Anyone who is interested in the well-being of autistic people can easily verifiy what FEAT (and the MPs FEAT has successfully lobbied) has publicly said and done.

If FEAT et al. are ashamed of their on-the-record, verifiable, and extremely persistent actions and statements, then I am looking forward to them saying so, publicly.

Also, if FEAT objects to the public, on the record, verifiable statements and actions of the MPs and Senators who they have so successfully lobbied (and who have concluded that autistics lack humanity, have a diagnosis no less detrimental than terminal cancer, are a blight on society, etc.), I look forward to seeing these objections in public.

Lekica said...

Hi Michelle,
as a mother of a girl with PDD who has not responded to ABA (nor PECS or some floortime variatioins) and is happily developing through another programme, I fully sympathise with you and entierly understand that this Bill is limiting the choice for parents and individuals with autism. Even though I am not Canadaian, I would fear that the adoption of this Bill in Canada would have an effect on how persons with autism are supported in other parts of the world. In our case, our daughter would entirely stop in her development. I hope and wish you much success in preventing the Bill's adoption.
Sarajevo, Bosnia

jypsy said...

Bill C-304 was defeated 155 to 112

Anonymous said...

Hi all,

I know that the bill had some flaws... and that some of the advocacy has been negative in the metaphors that have been used... but as one of those who has seen some real benefits inherent to the ABA appraoch I thought I would say that it sure would be nice if ABA Therapy were covered by the Provinces.


Michelle Dawson said...

ABA-based autism interventions are funded by governments in all Canadian provinces but Saskatchewan. In all these ABA-funding provinces, the ABA services have been provided in close and constant consultation with parents and parent-run autism organizations.

Autism advocates in Canada made their original demands by insisting that after a maximum of three years of early ABA/IBI, autistic children would be mainstreamed in regular schools and would need no other services. Autism advocates then radically altered this position (which is now a demand for cradle to grave ABA for all autistics), and were then furious with governments who listened to and met their original demands.

My view is that governments (federal, provincial) should consider that autistics deserve to benefit from and be protected by recognized standards of science and ethics. Existing ABA-based autism interventions do not meet those standards.

Anonymous said...

Hi Michelle,

Our province provides some assistance for our home based program. The amount provided is about half of costs we are currently incurring but it is a most welcome contribution. I suppose this is roughly consistent with some of the other provinces. Of course we would love to see all of it provided free of charge. Occupational Therapy, Speech and Lanuguage, Physical Therapy and ABA interventions all must come out of the funds provided. Professionals in these professions charge upwards of $100+ an hour and the government funding only goes so far. Many parents are forced by the lack of funds to triage services... to, in effective choose one service over the others when all are indicated as needed. The ethics involved in such underfunding likely speak to many...

Having worked in the system I think that there are some strengths inherent to the current appraoch (inclusion). However, for some students the capcity to effectivley deliver appropriate support is not present. I would be very happy to see such capacity develop. For many "advocates" I think that positions evolved as a result of ongoing "learning process" regarding the services and service delivery models within the School Districts. In essence some of these advocates appear to have been initially under the impression that the school system actually had the capcity to support a population of very diverse learners and that "inclusion" as an educational program (as it is currently implemented) was effective. It appears that for some of these advocates the change in position was a direct result of the "discovery" that the system was not able to modify and adapt sufficently for many children. The result was the change in "demands" that you note. After failing to achieve change within the schools the demands made by some advocates shifted to the goal of obtaining more direct funding so parents could directly manage services. Some continued to advocate for the development of more effective supports and capcity amongst schools (as oppossed to "medically neccessary" intervention). Some continue to do both. Systemic issues also present (ie staffing assignment based on seniority vs. the child's needs) and some advocates continue to work on these issues.

Yes there are huge ethical considerations... the state of the science supportig ABA is incomplete. Metaphors comparing autistics and the autisitic condition to cancer or as something to be cured are inappropraite in my opinion. The devaluation of autistics and the writing off of autistic ability is another issue. The tendency of some advocates to "over state" the state of teh science is another issue.... However, the sensitive application of the principles of behaviorism can be effective for some children.


Michelle Dawson said...

Hi Dave,

I don't think all the money in the world can make up for the grossly false, denigrating and dehumanizing information about autism widely disseminated by autism advocates (parents, governments, etc). These autism advocates are in charge of making all decisions about all autistic people.

This is a perfect recipe for producing terrible and expensive outcomes for a group, no matter the abilities of this group.

The autism advocates who about-faced re how many years of ABA/IBI they were demanding (originally, 3 years max; then about face to cradle-to-grave) did not about-face because schools didn't cater to atypical children. They about-faced because their children didn't become "indistinguishable" after three years (max) of ABA/IBI.

They started saying things like, "autism, like cancer (etc), doesn't stop at age six", and so on. I don't think there is any doubt about what their goals are: they demand ABA/IBI until their children are "better", meaning, not sick any more, meaning, non-autistic. A person involved in the Wynberg case told me, about the plaintiffs, that they want their children "cured" (his word not mine). They want normal children, not autistic children.

Meanwhile, autism advocates are so loudly and effectively informing the public (including governments) that autism is a horror, that autistic traits and abilities are worthless and repugnant, that autistics destroy families and the whole economy, etc. This is unlikely to make schools (or employers, or anyone else) welcoming and accessible to autistics.

As I testified in the Senate, I don't think there's enough money in Canada to satisfy the demands of autism advocates. And no amount of training and drilling in typical skills can protect autistic children (or adults) from a society which has, under the education and leadership of autism advocates, learned to view autistics as horribly diseased less than human cancerous blights on society (etc).

Anonymous said...

Hi all,
In yesterday's Vancouver Sun an article ran that I find to be interesting... Our Minister of Education (Bond) has presented an idea that would see the creation of seperate schools of "excellence" that would provide educational services to some children with Autism. In essence such a move seems to suggest a reversal on efforts to include children with autism in society and they suggest that efforts are afoot to return to the old institutional models that were found in such places as Woodlands and Glendale. Our past Minister of Education (Christie Clark) has presented a proposal to develop such a school (for profit?). The interesting part is that Michael Lewis is quoted in the article. Rather then buying into the effort to isolate, re institutionalise and otherwise remove ASD children from the school sytem as entities that are less then human Micheal Lewis has inidciated the opposite:

Michael Lewis, president of the board of the Autism Society of B.C., have concerns about the
proposal. They say segregating special needs children is a mistake, and any funds committed to a school such as this should be applied to
helping the public school system help special needs children instead."

he is further quoted and indiactes that:

"I can understand there may be situations where perhaps children's education is delivered someplace else," Lewis said. "But ideally I
would hope with the appropriate supports, these kids could go to public schools."

... and from my perspective Michael Lewis is correct... some families do elect to have education delivered some place else (such as in private schools or to home school or utilize distributed learning options) but his defence of the rights of children with ASD to remain in society (in the public school system) is interesting non-the-less.


Michelle Dawson said...

Mr Lewis' quoted statement is remarkable because the Auton trial decision, of which he is a major defender, states clearly that providing support (assistance, etc.) to autistic children is wrong. Not when there is a "medically necessary" treatment that promises to fix half of them.

I have to guess, but I suspect Mr Lewis' goal, like FEAT's, is to have ABA (as "medically necessary" autism treatment) in all schools in BC.

Dr Lovaas' position is that putting autistics together is the "kiss of death". One of the premises of ABA/IBI in autism is that autistics must constantly interact with typical people and must not interact with autistics--who will catastrophically reinforce those unwanted, worthless autistic traits and abilities.

Mr Lewis' position re autism and institutionalization can be seen here.

Anonymous said...

Hi Michelle,

... and yet he seems to be saying that children with ASD should not be isolated or reinstitutionalized in special schools and that they have the same rights to be included in society (the school system in this specific instance) as any other child. I happen to agree.


Michelle Dawson said...

Hi Dave,

Can you provide a link to the article you're quoting, please?

You are saying that Mr Lewis has about-faced, and now does not support the Auton trial decision, where it was deemed that 90% (at least) of autistics just naturally belong in institutions. You are also saying that Mr Lewis opposes FEAT, which widely disseminates the misinformation that autistics just naturally belong in instsitutions.

In reality, Mr Lewis fully supports FEAT and the Auton trial decision. And in reality, Mr Lewis recently stated that the moment his own son (who has been in ABA/IBI from very early in life, and is now 11) stops being in an ABA program, he (Mr Lewis' son) must be institutionalized --immediately.

Mr Lewis' position is that all autistics belong in institutions, unless (1) we become indistinguishable from non-autistics via ABA/IBI, or (2) we are currently in an ABA program working towards the goal of becoming indistinguishable.

This means that according to Mr Lewis, most autistics in Canada just naturally belong in institutions.

Mr Lewis' wife, Jean Lewis, recently stated in the Globe and Mail that autistics who do not receive unlimited "medically necessary" ABA/IBI starting early in life (that is, most autistics in Canada) must be institutionalized, be kept in restraints, and have our teeth pulled.

So far as I can tell, you're on the board of directors of ASBC, of which Mr Lewis is in charge. So you can tell me how many autistics are on Mr Lewis' ASBC board (looks like a board FEAT would be proud of). What kind of example does ASBC's refusal to include autistics set for schools and society?

Anonymous said...

Hi Michelle,

It is non-the-less an interesting position that he has expressed in the Vancouver Sun. I find myself to be in agreement with it. It is my position that Autisitic children do not belong in instituitions or in segregated schools as a function of having Autism... they deserve the same respect and opportunity as any other child. They deserve supports so that they can succeed at school with the peers who will become their neighbors, employees/employers, colleagues and friends. They deserve the supports that will allow them to thrive both in school and in the community. Every day we encounter the systemic barriers in schools, community and governement... and every day I role up my sleaves and try to effect change that is rooted in the sentiment ML expressed in the Vancouver Sun today.

A link to the article:

Yes... that is me on the list of Board of Directors for ASBC. I also have made some posts on the FEAT site and the Verbal Behavior forum. I continue to work on the issue of having self advocates on the Baord as voting members just as I have done with the Down symdrome society. I will continue to advocate for just such changes Michelle. The basic goal of seeing science based Autism services provided free of charge to all is a goal I will continue to support... and I will continue to advocate for a more accommodating and accepting community.

I cannot answer for statements made by ML and JL. I would like to point out that you have used the term "must" to describe what they have said. Must implies a neccessary outcome. I note that JL said "usually" and ML did not use the term must but was describing the likely outcome for his son if his ABA program were to suddenly stop. I do worry about the sudden stopping of programs when sufficient planning has not occured so as to transfer skills to the general environment in such a way that they are mantained by the environment. Behavior and skills that are mantained by the use of primary reinforcement or other forms of external reinforcment would likely extinguish unless other naturally occuring sources of reinforcment or internal reinforcment were part of the plan and this is why I find it hard to accept the sudden withdrawal of supports when the child turns 6 years of age.

As I have expressed the goals I have for my child are not "recovery" nor "cure". It has been our intent to help him develop skills that will serve him well as he makes his way to independence. One vehicle for helping him establish such skills has been, and likely will remain, rooted in the principles of ABA. Aron is autisitc and he has Down syndrome. Just as he will allways have an extra gene he will allways have autism. We love him for who he is and will do all that we can to see him grow into the fine young man that we know he will be.

Michelle Dawson said...

Hi Dave,

I've taken note that, as an ASBC board member, you defend and support the statements of Mr and Ms Lewis, re how autistics who are not in ABA programs should be treated.

You've also recently stated that a "cure" for your child is your goal and is surely everyone else's. That's over on the FEAT BC board. I've just re-posted that very recent message on TMoB, here.

ASBC has strongly protested against even the idea of autistics being considered stakeholders in discussions and decisions about ourselves. That was recent, and public. But ASBC's actions speak for themselves--there are no autistics on the ASBC board. This represents Mr Lewis' and ASBC's true position re including autistics. Mr Lewis and ASBC are in no position to object when autsitics are excluded, since this is a perfect reflection of their--your--own deliberate policy.

Anonymous said...

Hi Michelle,

I think my use of the term cure in that post is rather different than what has been implied. I wrote that the goal was increasing functional skills and supporting such skill development. It is the same goal that I hold for all children. When the term "cure" has been used in the past by others it has been used in the context of pathology and it has equated ASD as a disease to be cured. I do not view ASD in this light.

I remain committed to the goal of establishing representation on the ASBC board for the very reasons you have articulated.


Michelle Dawson said...

Hi Dave,

You previously wrote that parents regard typical children as needing a "cure". That is not my experience, but maybe things are different in BC? I read the BC media a lot, and I have not seen parent groups lobbying for a "cure" for all typical children, but I may have missed this important and startling story (did these parent lobby groups read this?)

Oddly, the CDSS does not use the word "cure" to describe the kinds of assistance DS people need, and they even say, in a policy position, that DS does not need treatment. And for heaven's sake, they put a big statement in the Globe and Mail, saying that ideally in the future, there will be a cure for intolerance, not for DS. What's wrong with them? According to you, they should want what every parent wants, a "cured" child/adult.

Anonymous said...

Hi Michelle,

Point of clarification: I used the term "cure" in the context of promoting and "increasing functional skill development". I went on to note that "it is the goal for all of our children". The emphasis was on skill development as the goal for all children and not on a "cure" for all children.
You are correct in that I did use the term "cure" on that FEAT post. I did so in a very different manner then how the I have seen the term "cure" typically used. I used the term "cure" in the context of promoting the development of functional skills. My use of the term in this manner was intentional. The goal was to shift focus from seeing ASD as a pathology to be cured towards redefining the issue into one of a process of promoting the development of functional skills.

ASD is not a disease. It is not in need of a cure as the term "cure" typically implies. I am sorry if I was not clear.


Michelle Dawson said...

Hi Dave,

So it's only for autistics that "developing" "functional" (meaning, functional for non-autistics) skills is called being "cured"? That's fascinating.

You did express incredulity that not everyone would want to "cure" autism.

This all looks impressively ironic, given one of the important issues raised in the Auton trial decision (see this).

Anonymous said...

Hi Michelle,

I am sorry I used the term "cured". It was my intent to suggest that the goal was to support the development of skills. To the extent that the goal is to promote the development of functional skills it applies equally to both those with and those without autism.

Functional skills are those that provide an individual with the essential knowledge, ability, skills and understanding that will enable them to operate confidently, effectively and independently in life and at work.

Some of the references you have provided with regard to better ways to work with people with Autism note increases in skills that seem to be functional. Aldred, Green and Adams (2004) for example note increased expressive language, social interaction and the initiation of communication. From my perspective the abilituy to interacte socially, to engage in expressive communication and to initiate communication are functional skills. The authors also note decreases in stereotyped and restrictive behavior. I am not suggesting that the goal of reducing stereotypic behavior is valid. If the behavior is functional for the individual then it makes little sense IMO to attempt to reduce it.


Michelle Dawson said...

Hi Dave,

So where is the evidence about which skills are "functional" for autistics? The behaviour analytic literature in autism has frequently claimed that behaviours empirically shown to be very functional for autistics are in fact useless (e.g., echolalia).

Yes, you can build a world where it is impossible for all autistics to function, unless we are trained to become or resemble non-autistics. Autism advocates in Canada have done a great job of building exactly such a world. In this world, none of the skills I have are considered "functional". You can see this in the Wynberg trial decision, which I wrote about here:

I have exactly the characteristics now enshrined in "the law of the land" as useless and maladaptive and wrong; and I lack many of the skills now legally defined as qualifications for human dignity and "membership in the human community."

Re Aldred et al. (2004), those targeted by this intervention are parents of autistic children. They are trained to respond to the existing and very functional communication of their children.

No matter how good an individual is at communicating, communication can only develop and is only "functional" when it is responded to. This is true whether children are autistic or non-autistic.

There is empirical evidence that competent autistic communication is persistently ignored by parents and teachers (Keen, 2005; Keen et al., 2005). That is, the problem is not that autistics do not have "functional" communication. The problem is that this communication is ignored.

Aldred et al. (2004) reports no result in the ADOS RIRB domain. The ADOS has no RIRB cut-off for autism, and the ADOS does not work in a scalar way. Claiming there was a result in this general area (DSMIV third domain) in Aldred et al. (2004) is therefore inaccurate in several ways.

Anonymous said...

Hi Michelle,

The outcomes for the Aldred et al (2004) study I indicated in my last post are reported by the authors. They note that the Vineland Adaptive Behavior Scales and ADOS stereotyped and restrictive behavior domain measured "suggestive but non-significant results" (they declined). You are correct... the parents in this research effort were trained to respond differently to the children... and these different responses led to the children increaseing social interaction, expressive language, and initiation of communication. The authors note that the primary hypothesis was that the parent training intervention would "improve clinic-observed autisitc impairments". The intent, in otherwords, was to see if the intervention woufl improve "autistic impairments". There are direct analogues of this sort of approach. One can be found in public education. Parents are taught to read to their children in order to increase literacy skills... In essence a deficit, childhood literacy, is addressed by altering parent behavior. Functional skill development is enhanced by altering parent-child interaction.

Your observations regarding the two Keen studies are right on target. The communication efforts are ignored and this is unfortunate and tragic. However, a communication behavior is only functional if it is responded to... the parents can be trained to repsond differently and this may effect changes in how the children com. ... so as to allow them to communicate beyond their family group or the group of folks who are trained to respond.


Michelle Dawson said...

Hi Dave,

The authors of Aldred et al. (2004) used only the communication subdomain of the VABS (as I wrote above), and reported no significant results.

The VABS is an instrument that measures how good a person is at being the right kind of person ("normal"), as opposed to the wrong kind of person (in this case, "autistic").

Aldred et al. (2004) produced no results in a VABS subdomain, showing that this intervention (whether the authors like it or not) failed to have the specific effect of making autistics more "normal" (meaning, those "right" non-autistic behaviours, versus those "wrong" autistic behaviours) in one area.

Aldred et al. (2004) also reported no significant group differences in the ADOS RIRB domain (as I wrote before). The ADOS RIRB domain is irrelevant to autism diagnosis (there is no cut-off), as I wrote previously. Also as I wrote previously, the ADOS should not be used in a scalar way. For an exploration of the RIRB domain in the current diagnostic criteria and instruments, see Mottron et al. (2007).

Any child, autistic or not, whose competent communication is persistently ignored will be in a lot of difficulty (this is true of adults also). It is indeed a tragedy that autism advocates--like FEAT et al.--widely disseminate the information that autistics cannot communicate at all (except in ABA programs).

Your position is remarkably similar to the position Dr Lovaas defended re the Feminine Boy Project. As I've written quite recently here,

And no amount of training and drilling in typical skills can protect autistic children (or adults) from a society which has, under the education and leadership of autism advocates, learned to view autistics as horribly diseased less than human cancerous blights on society (etc).

Anonymous said...

I look at ABA/IBI much like Helene Keller world opening up with the teaching of sign language.
Her Blindness and Deafness were not cured any more than autism can be cured. But sign language greatly improved the quality of her life and the ability to communicate.
When they speak of a child losing the diagnosis they are not speaking about curing his neurological disorder. Aba is to the autistic is what sign language is to the deaf and blind. It is a Core Health need and should be covered just as any other Core health need.

Anonymous said...

I wonder how Helen Keller would have progressed if left to her own development. After all blind and deaf was just her.
Instead through the intervention of a teacher therapist who taught her sign language she went on to do great things.
I am sure there would be many other ways of handling her but the best was sign language. One of the best interventions for autistics is ABA. WHY DENY THEM THAT

Michelle Dawson said...

Hi Anonymous,

So instead of being languages, ASL and all the other sign languages are now "medically necessary" deafness treatment?

And denying autistics the recognized standards of science and ethics that protect and benefit all non-autistics is supposed to help us?

Also, if you are going to resort to the grossly false, tedious and defamatory accusation that those who criticize ABA-based autism interventions are promoting child neglect, you should name names, particularly your own.

Anonymous said...

At the time of Helen Kellers life deafness and blindness could not be cured.Sign language made all the difference.
When the nuerological disorder of autism can be cured then Aba will not be needed. In the meantime it is making all the difference in many many autistic lifes. No one is denying recognized standards ethics or science. We all want answers. I am sure there would have been people like yourself around at the time of Helen Keller's life who would have criticzed her treatment just as their are today in the use of ABA as a treatment to help autistics.
You are really a little delusional when you make statements and attacks on those of us that see the great benefits of this treatment

Michelle Dawson said...

Hi Anonymous,

So in your view, no one should have criticized that other early ABA/IBI program at UCLA (Rekers & Lovaas, 1974; Rekers, Lovaas & Low, 1974).

After all, parents wanted it--it made all the difference in the lives of their children--and there was, at the time, no cure for homosexuality. Parents saw the great benefits of this treatment.

If you are applying the same standards of science and ethics to autistics and non-autistics, then surely you would conclude that those scientists (like Donald Baer) who criticized that other, very "effective" early ABA/IBI at UCLA must have been prone to delusional statments and attacks.

Anonymous said...

Clearly ABA for Homosexuality did not work or it would still be in practice today. Aba for autism is proving more and more that it has and is working. In science doctors long ago practiced blood letting for everything from fever and madness to anemia and debility. Today Phlebotomy(removing blood) helps people with hemochromotoses and polycythemia. Clearly these applications have worked in some things and should be praised and encouraged ( until such time an actual cure is found) and failed miserably in others. Let us praise and encourage the use of ABA in autism.

Michelle Dawson said...

Hi Anonymous,

Dr Lovaas' other early ABA/IBI--the one with the goal of "curing" or "preventing" homosexuality--was reported as a great success. It produced children indistinguishable from their typical peers.

For information about how "effective" Dr Lovaas' Feminine Boy Project was, and how it was killed by ethical dissent, see this article. Notes, sources, and references at the end.

I disagree with your position that the only criterion for deciding whether Dr Lovaas' FBP should be implemented and funded as public policy (as, say, "medically necessary" homosexuality treatment) is the "effectiveness" (or not) of this treatment in achieving its stated goals.

Anonymous said...

The first paragraph of your article your paranoid diatribe endorses a false hypothesis."The goal is to extinguish autistic behaviour therefore autistic people"No one want to extinguish the person in any disorder or disease let alone autism. This statment is both paranoid and illogical. The goal of AbA for autistics is to open up doors to a more normal functioning life.
The goal of scientific research is to find out why and how it has happened and work towards finding a correction
Most treatments therapies evolve over time. One day we may look back and shun chemotherapy treatment as cruel and wrong. Or we may modify the treatment to something more acceptable. So too with ABA it has modified and is
evolving and will no doubt continue to evolve. It is however standing the test of time.
As blind and deaf Helen Keller said "The public must learn that the blind man is neither genius nor freak nor an idiot. "He has"(like autistics)"A mind that can be educated. A hand that can be trained.Ambitions which it is right for him to strive and realize. It is the duty of the public to help him make the best of himself so that he can win light through work". The parents of autistics want this for their children. They need the tools to do this. The tools are very expensive. One of the best tools is ABA.

Michelle Dawson said...

Hi Anonimous,

The statement you put in quotation marks is not in TMoB. That article has a very large comment board attached to it, so if you have comments about TMoB, you are free to comment in the space provided.

The goal of all ABA-based autism interventions documented in the peer-reviewed literature is to produce a normal (meaning, non-autistic) person, "indistinguishable" from his/her typical peers. There is no science about any other kind of ABA program in autism.

All progresss in ABA programs is measured as to the extent to which autistics emit typical behaviour. "Typical behaviour" means behaviour that is adaptive for non-autistics. The "best outcome" is a child whose behaviour is sufficiently typical that they are no longer diagnosable as autistic.

In order for an autistic to emit typical behaviour, as is the goal in all ABA/IBI programs for which there is peer-reviewed science, essential autistic traits and abilities have to be extinguished.

It does not help deaf people or blind people to be trained intensively in typical behaviour at the expense of atypical behaviour that is adaptive to their differences, as autistics are in ABA programs.

E.g., It would not help a deaf person to have their signing ability extinguished, on the grounds that this abnormal (because this is not how normal--meaning, non-deaf-- people behave) hand and arm movement is useless, inappropriate, maladaptive and dysfunctional stereotypical behaviour.

Anonymous said...

So Now you tell me Deaf people have useless hand and arm movements. Where did you dream that up??? Hand and arm movement havenothing to do with deafness'
I wish to clarify ABA treatment is practiced today with positive reinforcement such as praize and reward. Ther is absolutley no punishment associated with it.
The autistic in my life really enjoys and benefit greatly from his ABA treatment
Question for you
Would you like to see a cure found for autism
Do you object to treatment that would work towards normalizing the autistic.
Would you like to see a cure for schizophrenia which may well turn out to also be a neurological disorder as is autism.
Would you like to see the schizophrenic given treatment to help normalize him or her?
If your answers are no I would call you a stonehearted Colossus.
The quote I gave you was from Hellen Keller her wish for the blind and deaf. It is my wish for the autistics also and I believe treatment like ABA will help fufill that wish

Michelle Dawson said...

Hi Anonimous,

You wrote, "So Now you tell me Deaf people have useless hand and arm movements."

Show me where I wrote that, please.

You also wrote,

"Hand and arm movement havenothing to do with deafness".

Deaf people's non-text language often involves the use hand and arm movements, just like non-deaf people's non-text language often involves making noises ("speech").

While most routine early ABA/IBI programs are now non-aversive, there currently remain ABA-based programs that use aversive procedures. These programs are reported in the published science.

Ivar Lovaas is, this year, involved in a presentation at the annual Association for Behavior Analysis meeting, where the subject is how and when to use aversives in ABA programs.

You may not care about the use of aversives on children you don't know, but other people may have such concerns.

Also, the major and sometimes only study (Lovaas, 1987; McEachin et al., 1993) used to demand and justify the funding of ABA-based autism interventions is dependent for its results on the use of aversives.

Autistics should receive the assistance, acceptance, accommodation, and respect we need in order to succeed in society as autistic people. Services for autistics, whatever those services are, should be asked for accurately, ethically, and respectfully.

The human condition is neurological, though if you have evidence to the contrary, I'm sure we'll all be rivetted.

There is a Supreme Court of Canada case (Starson) in which a man whose diagnosis is schizophrenia (among other similar diagnoses) argued that he must be allowed to refuse specific kinds of treatments and live the consequences of this. He won.

Anonymous said...

I am sure under the Charter the schizophrenic can refuse to take his medications ect
Here in B.C. severely affected schizophrenics were dismissed from the institutions. Many did not have the reasoning and where with all to continue taking their medications.Today we see many of them living on the streets in deplorable conditions. Some went on to commit suicide. Parents and family in many cases were unable to cope with their schizophrenic sons and daughters.
With medication the schizophrenic can function and appear quite normal. These medications are not a cure often have side affects but make all the difference in being able to function in this world.
Yes we are all neurlogical but there is pathology in Autism just as in Schizophrenia.
Signing in deafness serves the purpose of communication just as speech does in the nondeaf.

Michelle Dawson said...

Hi Anonymous,

Everyone needs assistance in order to do well in society, and needs a society in which they are welcome and full participants--as opposed to being officially deemed to be a "blight on society".

It's not surprising that when a group of people is dehumanized, denigrated and excluded, then deprived of any assistance, they do poorly.

It is also not surprising when a group of people barred from any participation in the decisions made about themselves does poorly.

Like deaf people, autistics have atypical ways of functioning. Requiring deaf people to be "indistinguishable" from non-deaf people is at the same level of ethics as requiring autistics to be or act as "normal" (meaning, non-autistic) as possible.

Anonymous said...

I am sure you have suffered a great deal and I am truly sorry.Yes we all need help and encouragment in this difficult world. Those with handicaps and medical conditions need even more.
These parents do not regard their children as blights on society.They are fighting to get help for their children. They love their children deeply and do not dehumanize them.You have not been barred from input on Autism. You were on the Senate Standing committee recently and were also a witness before the Supreme Court of Canada, You are very vocal.
You have caused harm to those autistic children who could really benefit from ABA treatment

Michelle Dawson said...

Hi Anonymous,

The statement about the existence of autistic people being a "blight on society" is on the record (see Hansard, and MP Blair Wilson's website, oh, and read the orginal post, which has links to both). I didn't make it up. And it has been fully supported and applauded by Canada's autism advocates.

If Canada's autism advocates oppose this statement, and those many other statements that totally dehumanize autistics (like this one from FEAT), then where are they? Where is the opposition to FEAT et al., and to the FEAT-lobbied politicial leaders who denigrate autistics and deny our existence?

Both sides in Auton (parents and governments--both sides being autism advocates) opposed my intervention. Neither side wanted even one autistic to have a say in the whole history of Auton.

In the recent Senate hearings, autistics were banned from the most important meeting, the round table about autism research. Just like we're banned from many other organizations (Autism Speaks, CAIRN, ASBC, etc), reference groups, committees, and events.

My position is that autistics deserve the recognized standards of science and ethics that automatically protect and benefit non-autistics like yourself. You are claiming, as autism advocates do, that these recognized standards, without which you could not proceed safely in society, are harmful to autistics. I disagree with this claim.

As for being "vocal", as I wrote here recently:

"I did not get involved in autism advocacy issues by choice. Autistics in Canada live daily the consequences of autism advocacy, and those consequences include being put in danger."

Anonymous said...

You appear to see things in a very paranoid delusional way. I just read Feat's statement and I see and hear a loving mother who is afraid of the possible outcome for her child and other severely affected autistics if they are not helped. Treatment is a way of helping
What possible motive would there be to dehumianize their own children. Perhaps this is why you have not been invited to sit on different discussions?

Michelle Dawson said...

Hi Anonymous,

In non-autism disability areas, advocates routinely fight against the unethical institutionalization and abuse (use of restraints, mutilation) of disabled people, rather than promoting this as autism advocates do.

You may choose to call all those non-autism disability advocates "paranoid" and "delusional" for attempting to make the world a better and safer place for disabled people, but this is a reflection of your own values.

Lonecrow said...

Michelle Dawson:

"The statement about the existence of autistic people being a "blight on society" is on the record (see Hansard, and MP Blair Wilson's website"

Please correct me if I am wrong but didn't Blair say that "Autism" was a blight? You seem to be implying that he said autistic people are a blight which he obviously did not say.

To quote you quoting him:
"It is time Canada took action against autism, a blight on society. We must support this bill."

He clearly says autism, not autistic people. There is a very large difference between those two words.

Please help me to understand your point of view by answering me this. If a couple was about to have a child do you think they should hope that child was or was not autistic? Or should they be indifferent about it?

Michelle Dawson said...

Hi Lonecrow,

So far as I can tell, you're saying it would be fine if Mr Wilson said:

"It is time Canada took action against Down syndrome, a blight on society."


"It is time Canada took action against homosexuality, a blight on society."

I disagree with you. If autism (or Down syndrome or homosexuality) is a blight on society, so is the existence of autistic people (or DS people or gay people). The only way to stop autism (or Down syndrome or homosexuality) from blighting society is to make sure there are no more autistic (or DS or gay) people.

In response to your question, the speculated (or actual) private thoughts of strangers are not anything I'm concerned about.

My concerns are at the level of human rights, the law, public policy, etc.

My position is that autistics deserve to benefit from and be protected by recognized standards of science and ethics (including professional ethics). These are the standards that automatically protect and benefit nonautistics, and without which you could not proceed safely in society, much less have a good outcome.