Sunday, February 18, 2007

Autism advocates do not take autism seriously

Autism advocates trivialize autism. They do not take autism seriously. For example, compare autism advocacy to advocacy in other disability areas. Here is the Canadian Down Syndrome Society, defining Down syndrome:

Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition. The occurrence of Down syndrome is universal across racial and gender lines, and it is present in approximately one in 800 births in Canada.

Down syndrome is not a disease, disorder, defect or medical condition. It is inappropriate and offensive to refer to people with Down syndrome as "afflicted with" or "suffering from" it. Down syndrome itself does not require either treatment or prevention.

Autism, like Down syndrome, is a neurodevelopmental disability. According to autism advocates, the CDSS has fallen to the siren song of DS. The failure of the CDSS to identify DS as a terminal disease and blight on society, and their failure to deny the humanity of DS people, is a destructive and deluded squandering of the lives and futures of DS children.

In the world outside of autism advocacy, CDSS takes DS seriously, and therefore considers that services for DS people should be asked for accurately, ethically, and respectfully.

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.

Having lived the consequences of autism advocacy, I wondered why autism advocates were unwilling or unable make their demands for services, whatever those services may be, accurately (with respect to the existing science), ethically, and respectfully. I also wondered why autism advocates demanded low or no standards of science and ethics for autistics, as opposed to the high standards that automatically protect and benefit themselves.

A possible, evidence-based answer to these questions is that autism advocates don't take autism seriously. They have not bothered with the hard work of slogging through primary sources, of critical thinking, of the comprehensive and impartial (in every sense) gathering of information that is the necessary foundation for ethical decisions. Autistics are just too appalling and blighted and doomed. We aren't even human. We're not worth the bother--the hassle of seriously applying recognized standards of science and ethics.

Instead, autism advocates equate autism with terminal cancer. They have wished their child had cancer instead of autism (also see this). And they have said that autism is worse than cancer because autism does not kill us. This autism advocacy staple has the purpose of spreading dread and horror of autism, of denying the worth of autistic lives, of informing Canadians that it is better to die painfully of cancer than to be autistic and alive.

Promoting autism as a degenerative disease process is also anti-scientific and unlikely to result in research leading to genuine help for autistic people. Similarly, models of autism premised on autistic brains being damaged versions of non-autistic brains have comprehensively failed (that includes Laurent Mottron's "agnosia" model). No deficit-based account of autism has (after 64 years of research) achieved any kind of consensus in the science, possibly because deficit-based accounts have so far made remarkably poor predictions.

Autism advocates consider peer-reviewed papers reporting autistic abilities (found either intentionally or accidentally) to be romanticized and dangerous nonsense, misleading and uninformative. All findings in autism research should therefore (according to autism advocates) be interpreted as deficits or not interpreted--or reported--at all. Researchers who find and investigate autistic abilities should not be funded and their foolish and dangerous work should not be published or discussed or for that matter, allowed.

For example, if peer-reviewed research shows that young autistic children--those who would popularly be considered "severely autistic", "non-verbal" and "low-functioning"--communicate competently but are persistently ignored by their typical parents (Keen, 2005) and teachers (Keen et al., 2005), then this science has surrendered to the deadly siren song of autism and must be discarded.

This is even though, or rather, especially because it was demonstrated that these very young autistic children detect when their communication has failed, and make multiple efforts to repair this failure, including by using strategies considered too sophisticated for their presumed developmental level. Also (it only gets worse), earlier attempts to communicate by these autistic children were not problematic. It was only their later efforts, after earlier attempts had been ignored and the children were repeatedly forced to effortfully create repair strategies, that the children's attempts to communicate became problematic.

To avoid romanticizing autism and squandering the lives and futures of children, autism advocates have rejected this obviously unacceptable research, and instead have forcefully promoted autistics as being non-communicative and non-responsive. This advocacy has been so successful that autistics are described this way in the House of Commons. The full success of autism advocacy can also be seen when autistics are described in the House of Commons as "violent" and "self-destructive".

Autism advocates are definitely onto something here. It is true that persistently describing and treating autistic children or any other kind of children as non-sentient--as non-communicative and non-responsive--will very likely result in their behaviour becoming problematic. In fact, very few adults deal gracefully with being persistently treated as though non-sentient. So this is an impressive show of the power and influence of autism advocacy, and its consequences. But is this taking autism seriously?

Yes, autism advocacy is impressive in the area of spreading fear, dread, horror, and hatred of autism. Autism advocates have demanded that autism be seen as a horrific disease process or tumour, while simultaneously reducing autistics to collections of inadequate, inappropriate, maladaptive, repugnant, repulsive, etc., behaviours. These efforts have been successful. But promoting autistics as non-responsive and non-communicative is anti-scientific, unethical, and harmful. Associating violence with disability is no more accurate or acceptable than associating violence with race. The autism advocacy wholesale vilification of any science (now characterized as the killer rocky shore that breaks and destroys children) that fails to confirm their absolute certainties about autism is a trivialization of autism. It is the opposite of taking autism seriously.

Autism advocates also trivialize autism by promoting ABA-based autism interventions as "medically necessary" autism treatment. This contradicts basic principles of ABA, the bulk of the behaviour analytic literature in autism, and particularly the work of Ivar Lovaas and colleagues (Lovaas, 1979; Lovaas and Smith, 1988, 1989; Lovaas, 1993; Lovaas, 2002; etc.). Autism advocates also place ABA-based autism interventions high above scrutiny or criticism. If I provide factual and verifiable criticisms of the behaviour analytic literature, then (I'm told), I'm expressing "anti-ABA prejudices".

This is as absurd, as non-serious, as claiming that I have "anti-cogntive-science prejudices" and "anti-cognitive-neuroscience prejudices" because I have harshly criticized science and scientists in these areas of autism research (and continue to do so).

The autism advocacy rejection of criticism and scrutiny as "anti-ABA prejudice" places ABA outside the domain of science, which is dependent on criticism, and into the realm of ideology. Autism advocates demand that all decisions made about autistics conform to their ideology, which cannot be questioned or challenged in any way. They want the scientific and ethical standards that benefit and protect all non-autistics disregarded when it comes to legal and public policy decisions about autistics. This too is the opposite of taking autism seriously.

Autism advocates have further trivialized autism by successfully promoting grossly anti-scientific epidemiology which has the effect of denying the existence of most autistics in Canada, and therefore denying most autistics in Canada even minimal services. This demonstrates how autism advocates write off all autistics who have not undergone unlimited "medically necessary" ABA/IBI starting very early in life. So does the widely disseminated autism advocacy position that autistics who do not receive unlimited "medically necessary" ABA/IBI starting early in life need to be abused (kept in restraints, our teeth pulled) in institutions. Autism advocates have been successful in making Canadian society unsafe for any autistic who is not in an ABA program, but is this taking autism seriously?

Autism advocates have also claimed to know with certainty the adult outcomes of autistics who undergo early ABA/IBI. There is no peer-reviewed science to justify this certainty. When there is no science whatsoever to support their positions, autism advocates respond by pretending that there is. Here again are the standards of science and ethics that autism advocates believe autistics deserve, but is this taking autism seriously?

The autism advocacy campaign to legally mandate ABA/IBI as "medically necessary" treatment for Rett's individuals also exemplifies the standards of science and ethics autism advocates find appropriate for autistics. This demonstrates exactly how seriously they take autism and the well-being of autistic people.

Autism advocates also trivialize autism, and show off the scientific and ethical standards they are sure that autistics deserve, by creating and applying novel, untested diagnostic categories and criteria. They are so creative, they can diagnose adults and children, and describe our lives in detail, without having met us or knowing anything about us. They also claim that there are perfect predictors of outcome in autism. The purpose is to divide autism into the (apparently innate) categories of "real" and presumably "fake" autism. When I have time, I'll blog about the empirical bases and seriousness of this "autism reality".

Autism advocates further trivialize autism by responding to any criticism of their actions and statements with mockery, misrepresentation, and defamation. They consider themselves to be infallible. They are right about everything all the time. Their actions, which have consequences for all autistic Canadians at the level of law and public policy, are sacrosanct--anyone who criticizes them in any way is not only deluded, but reprehensible, pernicious, and dangerous (and in my case, a fraud, imposter, and criminal). This makes a productive, science- and ethics-based, respectful public discourse about autism impossible.

The actions of autism advocates have unsurprisingly resulted in Canada's government and major opposition parties agreeing that autistics shouldn't exist at all. Contrast the non-serious non-response of autism advocates to this political consensus that autistic lives should be prevented, with the careful and very serious actions and statements of the CDSS in response to recommendations re prenatal screening. You can see the CDSS in recent media stories here, here and here.

Autism is a disability. Here is a description of what disability means, from the Supreme Court of Canada decision in the Eldridge case:

It is an unfortunate truth that the history of disabled persons in Canada is largely one of exclusion and marginalization. Persons with disabilities have too often been excluded from the labour force, denied access to opportunities for social interaction and advancement, subjected to invidious stereotyping and relegated to institutions [...] This historical disadvantage has to a great extent been shaped and perpetuated by the notion that disability is an abnormality or flaw. As a result, disabled persons have not generally been afforded the “equal concern, respect and consideration” that s. 15(1) of the Charter demands. Instead, they have been subjected to paternalistic attitudes of pity and charity, and their entrance into the social mainstream has been conditional upon their emulation of ablebodied
[...] One consequence of these attitudes is the persistent social and economic disadvantage faced by the disabled.
[emphasis in blue is mine]

This powerful and accurate definition of disability shows that autistic people are indeed severely disabled in Canadian society. We are at a tremendous disadavantage. This description of disability was central to my intervention in Auton at the Supreme Court of Canada, where I opposed autism advocates on both the parent side and the government side. In Auton, both sides consisted entirely of autism advocates, just as both sides, parents and governments, in the current supposed conflicts re ABA-based interventions are autism advocates. Neither side was or is now interested in providing autistics with genuine assistance so we can proceed safely and succeed in society; as I've written elsewhere, they agree entirely about what autistics are worth and how we should be treated. They are not interested in taking autism seriously. They are only haggling over whose unwanted burden we are.

The disability of autism is trivialized when it is claimed that when autistics are badly treated, harmed or neglected, the problem that has to be gotten rid of is autism (meaning, the existence of autistic people). This is a hallmark of autism advocacy: to insist that we need to be abused and mutilated (kept in restraints, our teeth pulled) in institutions; to deny that autistics are sentient, existent, human or alive; to call us a blight on society; to deny us even basic standards of science and ethics; then to flourish our resulting suffering and poor outcomes as evidence that autism is appalling and must be eradicated. Is this taking autism seriously?


Keen, D. (2005). The use of non-verbal repair strategies by children with autism. Research in Developmental Disabilities, 26, 243-254.

Keen, D., Sigafoos, J. & Woodyatt, G. (2005). Teacher responses to the communicative attempts of children with autism. Journal of Developmental and Physical Disabilities, 17, 19-33.

Lovaas, O.I. (1979). Contrasting illness and behavioral models for the treatment of autistic children: A historical perspective. Journal of Autism and Developmental Disorders, 9, 315-323.

Lovaas, O.I . (2002) Teaching Individuals with Developmental Delays: Basic Intervention Techniques. Austin, TX: Pro-Ed.

Lovaas, O.I., & Smith, T. (1988). Intensive behavioral treatment for young autistic children. In B.B. Lahey, and A.E. Kazdin (Eds.), Advances in Clinical Child Psychology, 11. New York: Plenum Press.

Lovaas, O.I., & Smith, T. (1989). A comprehensive behavior theory of autistic children: Paradigm for research and treatment. Journal of Behavior Therapy and Experimental Psychiatry, 20, 17-29.


Chasmatazz said...

Any comparison of autism with Downs Syndrome should mention the fact that almost all DS fetuses are prevented from being born, while autistics are not selectively aborted (yet). This profoundly affects the political climate surrounding each of them.

Michelle Dawson said...

Hi Chasmatazz,

There is no Canadian government policy that DS ideally would be prevented, while this is the case in autism (this is expressed on the Health Canada autism webpage). Both major national opposition parties also agree that ideally autism should be prevented.

I doubt that DS people have been called a "blight on society" and lacking in humanity by the Liberal Party of Canada. If this had happened in the House of Commons (as it did with autistics), this would have been met with a storm of protest from DS advocates. In contrast, autism advocates are (according to their own public responses) apparently delighted when autistics are denigrated and dehumanized this way.

I don't think the availability or not of prenatal screening accounts for these and many other contrasts.

Michelle Dawson said...

For related posts, see Dignity for Autistics chez Autism Diva, What Harold Doherty Apparently Won't Print from Ballastexistenz, and Harold L Doherty Builds a Strawman Army from Kev Leitch.

Anonymous said...

Hello all,

Regarding prenatal screening and DS. It is a huge issue and it has served to galvanize action for many parents... however, it is not the only driving force behind the "style" of advocacy CDSS has adopted. The positive emphasis CDSS places with regard to Down syndrome and the positive regard that they communicate for all with disability has a long history and represents a deliberate effort to address negative stereo-types.

New developments in the US and in Canada have placed more emphasis on the importance of continueing to provide factual information regarding the nature of people with Down syndrome . Recently the Society of Obstetricians and Gynaecologists of Canada (SOGC) and the American counter part recommended "...that every Canadian woman, regardless of her age, be offered the choice to undergo non-invasive genetic screening during her pregnancy.". This of course is of concern given the tendency of many to continue to offer "dark" and negative information regarding the nature of Down syndrome and teh possibility that parents will elect to abort given such information. There is much work yet to be done by CDSS.

Today's Globe and Mail presents a story exporing the developments in early detection of ASD... prenatal screening for ASD is still not a reality but it seems to be on the event horizon.

\link{, Globe and Mail}

\link{, SOGC}

\link{htp://, CDSS Responce}

\link{, DSRF News


jypsy said...


Please allow me to fix your links because they (especially this one ) are worth reading!

Globe and Mail
CDSS Responce

Anonymous said...

Hi jypsy,





Chasmatazz said...

Hi Michelle,

Please go to this link:

Why is there no left margin?


Michelle Dawson said...

Hi Charles,

Sorry--I don't see the problem.

Chasmatazz said...

Sorry, Michelle. It's already been pointed out to me that the problem likely lies in my browser. I'll close it and then reopen to see if it still happens, (can't do that now though - I'm working on a writing project).


Chasmatazz said...

OK - tried to write a blog entry on this but got tired and couldn't write anymore. Maybe I'll take it up again...dunno. In the meantime, here's food for thought:

Autism advocacy, (the negative kind), is shaped by people who would have prevented their autistic child from being born, but couldn't.

Downs Syndrome advocacy, (the positive kind), is shaped by people who could have prevented their DS child from being born, but didn't.


Mike PBJI said...

Worse than not taking autism seriously, Canada's autism advocates don't take autistic people seriously. Their wants, needs, feelings, opinions and personhood are all conveniently and consistently ignored. They say, "Look autism has robbed them of their soul-we need to remove it so they can live in our world!" -until an autistic emerges that agrees with their premise that autism is a terrible affliction anyway-then suddenly, soul intact and in the world, they are paraded around senate committees as proof that their advocacy is supported by people with autism.

How do autism advocates address the varying views amongst autistics and amongst parents? They don't- they dream up the most complicated and challenging autistic existence possible and then insist THAT is THE autistic experience and proof that autism is terrible.

Sharon said...

Hi Michelle
It's very moving and upsetting to read all this. It's still shocking to me, how careless and horrid people can be when talking about autistic people. I'm sure you are no longer shocked by it having been exposed to it for longer.
I'm a bit annoyed this morning. I just received a questionnaire from the local university about the impact of autism on family life. There are dozens of questions inviting respondents to describe just how awful things can be when you're saddled with an autistic child. Obviously, one could give the opposite answers to what they might expect, but I wonder if such a list of questions would even be sent to the parents of, for example, DS children.

Michelle Dawson said...

Hi Sharon,

I wrote this recently in a letter to someone:

"I have found that constantly reading negative, pejorative views of autistics has a negative effect on my work; I stop believing that I am capable of anything. There is science about how being surrounded by pervasive derogatory stereotypes hampers cognitive functioning ("stereotype threat"). I'm aware of this science, but it does not help me avoid the consequences of constantly being informed that I'm a blight on society. I am in awe of autistic children who deal with this barrage of denigration gracefully every day."

Joseph said...

For anyone thinking about commenting on Mr. Doherty's blog, don't bother. He selectively approves and disapproves posts in a way that I can only describe as dishonest.

jypsy said...

Joseph, it was here on your own blog where I first raised this issue and then again on Ballastexistenz. I don't use words like "censor" and "manipulate" lightly at all.

controlGroup said...

Sharon--when my husband was called recently by someone from the autism diagnostic machine regarding a study that we had supposedly said we were interested in (we never said we were), he (not-so-politely) told them that their study was about the last thing on our list of priorities. The woman was shocked, apparently, that we weren't eager to contribute to the furthering of ABA proof-of-concept research and Canadian flavored autism advocacy.

Does anyone know of any researchers here in BC who dare to question the status quo of ABA=only accepted practice therapies for autism? Anyone at SFU/UBC or independent who goes against the tide? The official diagnostic body is very firm in ABA endorsement, albeit with the usual misinformation. In the course of my son's evaluation I heard the familiar "ABA teaches autistics how to learn", as well as conflicting information on exactly who ABA works best for (one person says it's best for "low-functioning" autistics, another says for "high-functioning", both being part of the same evaluation team).

A couple of other random questions: can anyone tell me the exact rationale that is being used to promote ABA/IBI as "medically necessary"? Apologies, Michelle, I've read a number of your papers but I still can see no reasonable rationale to claim it as such (the fault which lies with those who are promoting it as such--I have yet to see a concise statement as to who it is "medically necessary"). Also--has anyone chronicled the growth of ABA/IBI as a therapeutic practice following Lovaas' 1987 study--as in the marketing and promotion of behaviorism in the "niche-market" for autism?

jypsy said...

can anyone tell me the exact rationale that is being used to promote ABA/IBI as "medically necessary"?

As I understand it, the hopes of parents are that "medically necessary ABA" will be paid for by Provincial *Health* Departments' budgets. I know a number of parents are planning to apply for retroactive payments for all they've spent so far if this happens . It seems these parents are mostly also the ones who believe ABA will "cure" autism (at least 47% or 48% of it). They don't believe the Education Departments have enough money to ever win their case that ABA is "educationally necessary" so they've gone the "medically necessary" route. I don't think "reasonable rationale" has anything to do with it.

Michelle Dawson said...

Hi ControlGroup,

Sorry to take so long to get back to you.

Re people in BC, the short answer is no, there isn't anyone I know of who fits your description (that doesn't necessarily mean they don't exist...). I enjoy speaking with Grace Iarocci (SFU), who works with Laurent Mottron and Jake Burack sometimes, but she doesn't fit your description (she has some major role in ACT BC). Pat Mirenda would be opposed by FEAT, because she is the general area of PBS (a form of ABA that FEAT seems to oppose), but she is a BCBA, and has a lot to do with UBC being a university offering BCBA-qualifying courses.

Where (and by whom) was your son evaluated? The conflicting information is par for the course--when low/no standards are forcefully demanded for autistics by autism advocates, those low/no standards are often achieved.

Re the whole "medically necessary" issue, that's a book-length subject. As jypsy wrote, it's not supposed to make sense (e.g., see this and this). The about-face in Wynberg on the "medically necessary" issue might merit a book in itself (for another side of this, written just before the Wynberg decision came out, see this).

The story of how ABA/IBI became popular in the US consequent to an excerpt of "Let Me Hear Your Voice" appearing in that highly credible scientific journal, Reader's Digest, is well known. I've never found any way to verify this story.

In Canada, it was an episode of The Nature of Things in 1996 (until recently, still quoted by autism advocates as Truth--hey, it was on TV! David Suzuki said so!) which seemed to have set things off. But again, these things are hard to verify.

I'm not too interested in this, compared to, e.g., why the criticism of ABA/IBI in autism has been so incompetent and irresponsible (with some notable exceptions), and how this incompetence and irresponsibility contributed to the current status of Lovaas ABA and other forms of ABA-based autism interventions.

Anonymous said...

ACT (they have fropped the "BC" from most of the literature it seems) has provided some training in the past that is outside of the scope of ABA... they ran a number of workshops recently that were not ABA which included topics with regard to RDI, Sensory Integration and SMILE. I think the state of the science supporting these approaches is even more limited then what you find in the realm of UCLA-ABA, VB-ABA or PBS-ABA.

The arguement for ABA as medically neccessary as I see it follows. It is a "loaded" arguement and contains many hot buttons. I present it only for discussion purposes (don't kill me in a flame war please). Please note that this is how I understand the arguement. There may be finer points that I am missing;

1) Autism is thought to be a neuro-developmental issue. Some suggest that is is a neuro-degenerative disorder.

2) As such, it is seen by proponents of this arguement, to be similar to a physical disability and a degenerative disease.

3) Others with physical disability (ie brain injury, paralysis etc) or degenerative diseases (ie SMA-1) have their primary health care needs covered under provinical health plans for therapy and services to address these disorders.

4) As ASD (acording to this line of thought) is simialr to other conditions that are covered by MSP it shouild also be included under the MSP services.

5) ABA has been proven to be effective in "treating" ASD.

6) The primary health care needs of a person with ASD is for ASD

7) MSP should be extended to include ASD treatment... ABA should be covered so as to address the primary health needs of a person with ASD as it is the only proven effective intervention-therapy.

????? I don't know if I missed a few steps or added a few....

I think it is an arguement of extension with a bunch of assumptions tossed in.



Michelle Dawson said...

I'm familiar with ACT (BC or otherwise), and not impressed with them at all. Grace Iarocci's involvement with ACT does not speak well for her.

The BC gov't has Steve Gutstein on their list of professionals whose services they will fund (or they did, last I looked), which shows their own low/no standards when it comes to autistics. ACT is going right along with this. Again, this also shows how successful autism advocates have been in demanding only the lowest standards of science and ethics for autistics.

Promoting autism as a neurodegenerative disease is grossly anti-scientific, as well as harmful and dangerous. It's exactly the kind of action we've come to associate with autism advocacy (anti-scientific, unethical, and harmful).

I'm still waiting for FEAT et al. to denounce the Wynberg trial decision. The Wynberg parents are going to the Supreme Court of Canada to try to have that decision upheld. That's a decision categorically denying that ABA/IBI is "medical" or "medical treatment" or "medically necessary" treatment for autism. Instead, I see major autism advocates (the usual "medically necessary" camp) supporting and applauding the Wynberg trial decision.

Ivas Lovaas and colleagues have repeatedly written (in peer-reviewed papers, scholarly books, and two of the major ABA manuals) that autism is not a disease (or even a valid, useful diagnosis), and that medical approaches to autism are useless.

Diagnostic standards in the bulk of the ABA literature are often poor or absent, possibly because diagnosis is very often considered to be irrelevant (and a possible impediment) to ABA-based interventions.

There is no mention anywhere in the vast (those hundreds or is it thousands of papers marketed as "proving" ABA is "effective" autism treatment) behaviour analytic literature that Lovaas ABA or any other kind of ABA-based autism intervention is "medical" or "medical treatment" or "medically necessary" treatment. Instead, ABA-based interventions are described as a learning approach, an educational methodology, instruction, training, etc.

Behaviour analysts are not medical people (I haven't found an MD BCBA yet--if there is one, I'd like to know), do not publish their research in medical journals, etc.

Anonymous said...

Hi Michelle,

I should have been more clear that it is not my position that I outlinned but is simply how I understand the "medically neccessary" argument.

I do appreciate that "Iva(r) Lovaas and colleagues have repeatedly written... that autism is not a disease (or even a valid, useful diagnosis), and that medical approaches to autism are useless ". I happen to agree. However, I do wonder if he would be OK with seeing ABA services paid for by MSPs?

I also agree that "Promoting autism as a neurodegenerative disease is grossly anti-scientific, as well as harmful and dangerous.".

Your point that "ABA-based interventions are described as a learning approach, an educational methodology, instruction, training"... this is how I have preceived the nature of ABA interventions from the beginning. I recall that in the past you had issues with this position and would not accept that ABA was a valid "educational" strategy. Did I get this wrong and misunderstand what you were saying

At any rate... I suppose that the point could be made that ABA is educational and also addresses a medical condition as is the case with "re-educational" supports that are deployed after injury (brain injury, life style reeducation etc..)... but I am not suggesting this is a valid argument as related to autism.

ABA remains an important part of our son's life. Not becasue we strive to remove the autism or "cure" him of autism etc... it has simply proven to be effective in supporting him to develop many specific skills that will serve him well down the road. He remains thoroughly autisitc... and smart... and funny... and kind.. and generous... silly, bright ...


controlGroup said...

Thanks for the information Michelle--my son was evaluated at SunnyHill here in BC, which as
I understand is considered the "gold standard" by the MFCD for evaluations
(if you want to know the specific names of the people involved, I can email them to you) .
The endorsement of ABA/IBI here is overt, at least by everyone involved in diagnostics.
As such, as a parent who *isn't* looking for 40 hours per week of intensive ABA/IBI for my son, it is a daunting task
trying to find alternatives to the standard process here.

I know this topic isn't of particular interest to you (the growth of the therapy industry)
but I find myself and family in the middle of it. There is a cultish reality that his been
constructed about autism, via "autism advocates" that have found great endorsement in the diagnostic
bodies up here. Having read your work (which I came about thankfully via Frank Klein's page) and that
of other autistic bloggers, I cannot look at what is being offered up here as "best practice" with
anything but a great deal of trepidation and sorrow, really. When I noted to the examining
psychologist that I did not think my child would do well sitting across the table getting the
equivalent of dog training (I was tired that day and not constructing the best argument), immediately
a sales-pitch guilt trip came out, about the therapists being more objective than I might be, invoking
the plea that I should want to do the best for my child, as we parents will be gone someday. I've backed
off the arguments, at least the confrontational ones, because I know that the greater part
of selling ABA is managing reluctant parents into agreement,
not necessarily on the basis of sound science or ethical treatment of autistics.

Perhaps the saddest part of the diagnosis is that my son now has a label that gives professionals
license to label everything about him as pathology and any resistance on our part to see him that
way as parental denial. If we aren't miserable,
if we choose accept him as autistic and celebrate his strengths,
we don't want the best for him. We've gotten overtures of that attitude already.

My son is a very sociable guy and loves the local preschool he goes to (which is a general preschool);
I know he would do well in a program with a bit more structure and 1-on-1 instruction/guidance,
more than a couple hours a couple days a week. I know that the TEACCH methodology isn't perfect, but
at least at its premise it respects autistics more than ABA/IBI does (that is, it doesn't attempt to
make autistics more NT-appearing or "normal"). TEACCH programs (or something like them)
seem virtually non-existent up here. Parents are basically supposed to apply for MCFD funding,
go hire a behavioral consultant (from an approved list) and then in turn a "staff" that delivers
the ABA/IBI program.

I imagine you're probably sick of parental stories--please know, however, that some of us really
appreciate the work that you've done. It has informed my decisions about what do do for my son in a
much more convincing way that the autism diagnostic machine ever could.

Michelle Dawson said...

Hi Dave,

Identifying what kind of intervention one approach to autism (in this case, Lovaas ABA and other forms of ABA-based interventions) genuinely is and is not, is not the same as stating that this approach is "valid" for any given population. Identifying risperidone correctly as pharmaceutical (rather than, say, surgery) does not mean that it works or that everyone (or anyone) should take it (whether it does or does not work). Maybe you can show me where I deny that ABA-based autism interventions are education?

Dr Lovaas is free to officially (in peer-reviewed journals or scholarly books) alter his long-standing (decades) position that autism is not a disease (or a valid diagnosis), and that medical approaches to autism have no merit. Likewise, behaviour analysts are free to get medical training and become physicians, adopt medical standards, publish their research in medical journals, etc. If/when this happens, I won't ignore it. Until it happens, there is no point speculating.

The fact that there are behaviour analysts who promote the services they provide as being medical treatment for autism should raise concerns about basic standards of science and ethics.

The intervention you use (which you've described elsewhere) would be called "eclectic", meaning that it is ABA combined with other contradictory methods. This kind of treatment has been found in the behaviour analytic literature to have poor results, and is opposed by autism advocates in Canada (including FEAT et al.).

controlGroup said...

I should clarify--I know TEACCH is premised in part on ABA/IBI (structured teaching). There seem to be no programs that are more-or-less like a (more) structured preschool, without the need to hire a staff of one's own. I know various school districts in the US have adopted TEACCH as an educational methodology for early preschool and beyond--it doesn't seem to exist here in Canada as an alternative to intensive ABA/IBI programs.

Anonymous said...

Hi Michelle,

You wrote on 31-05-2006 22:23:07:

"I also disagree that "working for reinforcers" or "reinforcement" is the same as learning".

I thought you were implying that ABA was not a "learning" or educational process when you were making this point way back then. In my mind I equate "learning" with "educational". I do recognize that these might not be the same things as per your points regarding "implicit" and "explicit" learning modes. I apologize if I have mischaracterized what you had intended.


Michelle Dawson said...

Hi Dave,

I did indeed write,

I also disagree that "working for reinforcers" or "reinforcement" is the same as learning".

My disagreement arises from many reasons, including that there is evidence in the behaviour analytic literature in autism showing exactly this. E.g., an autistic child can successfully respond to a preferred reinforcer without, over the course of 900 trials, learning one simple discrimination (red versus blue; Rincover & Newsom, 1985).

A possibly related problem re reversal designs (a popular design for ABA single subject studies in autism) has also been raised recently by Lord et al. (2006), the NIMH group which for two years (2002-2004) met to discuss methodological and other issues in research into educational and psychosocial autism interventions. This group included behaviour analysts (e.g., Tristram Smith, who presented some of the findings of this group at IMFAR 2006).

But questioning how successful ABA programs are in educating autistics as it is claimed they educate autistics is different from questioning what kind of intervention or treatment they are. Also, anyone who has read Green (1987) or A.F.'s testimony from the Wynberg trial (etc.) can see how powerful ABA programs are, in educating children to adopt and express strong views (e.g., that it's wrong to be homosexual, that it's wrong to be autistic).

Michelle Dawson said...

Hi ControlGroup,

It was researchers from the Sunny Hill Health Centre for Children, in Vancouver BC, who reported in a peer-reviewed journal that there was no effect of kind or amount of any currently marketed autism treatment (including ABA) on outcomes in children between the ages of 2 and 5 (Eaves & Ho, 2004).

Half the ~40 autistic children in this study were in ABA programs. Their outcomes did not differ from those of children who were not in ABA programs. The data are there for all to see.

Apart from pointing the Sunny Hill people to their own research, it might help to point out that there is no ABA controlled trial in autism that correlates ABA hrs/wk with outcome measures.

I think it's important to respond to false statements, like the ones you've been asked to accept, with accurate criticisms. Saying "dog training" is a sure-fire way to ensure your concerns (however genuine) will be dismissed.

You are right, when you identify the problem as poor or zero standards of science and ethics. And you're right that any attempt to argue for higher standards is seen as misguided if not reprehensible. Petty things like recognized, basic standards of science and ethics are not supposed to get in the way of saving autistics from our otherwise inevitable doom.

I don't support TEACCH (which is available in Montreal, last I heard). It's true that of all currently-marketed interventions, TEACCH is the only one which has been shown to keep older autistics out of institutions (and that was prior to 1982). It's true that TEACCH does not overtly have the goal of producing a typical-looking person. And it's true I haven't been to North Carolina to see the "real" TEACCH (I've also heard about an advertised-as-very-successful TEACCH school in the UK).

But the science supporting TEACCH is not very strong. In some ways, this isn't surprising, because while TEACCH is supposed to be based on accepting and working with autistic traits and abilities, TEACCH's views (including their most recent views) about these traits and abilities read (to me) like a list of unsupported cliches, as opposed to anything based in the science.

I think also the whole issue of "structure" has been very poorly framed in autism, or at least, in the area of autism interventions. Another problem is that no one has been interested in how autistics learn well. This is regardless that the published science records many instances of autistics learning well, including exceptionally well (all outside of ABA programs; Dawson et al., under review).

Adding ABA elements to TEACCH is not likely to help; again, "eclectic" treatments, which always include some ABA, combined with TEACCH or Floortime or other contradictory approaches, have not had good results.

cabevizzo said...

This is my first visit here, great blog. I have a son with DS and am currently working on advocacy of cued speech as a tool for use in speech and language therapy as well as communication for individuals with DS as well as other medical and developmental issues. In my research I have learned some interesting things about the deaf individuals not embracing oralism because they feel it threatens their culture, which they are very proud of and at the center of which is ASL. They see themselves as complete and whole as they are and part of a community (cultural view) and generally advocate against the "pathological view" (and any form of oralism) where they are considered "not normal" because they cannot hear. They have a term called audism, which is essentially a form of racism against the deaf. I just thought this information might be more food for thought here, as I understand this blog to be discussing basically the pathological view versus the cultural view within the autistic community. Perhaps something can be learned from the deaf community on advocacy in regard to this issue. Thank you very much.

AdvocateForAutism said...

Never say ALL advocates. Visit my site and you will see that I work for all of those with autism to create independent lives utilizing self-advocacy, self-determination and person centered planning. I do not believe in using agencies to gain services, but rather the individual control their own medicaid funds and choose where they want to live, whom they want as support staff, complete control over their lives! I do not believe in sheltered workshops, group homes or discrimination of any kind towards those with autism. Again, do not group all advocates into 1 bunch - I don't group all of those with autism into 1 bunch!
Sally Colletti

Joanna said...

Hey, Joanna from the US here. I was at first utterly puzzled by this post, because in the US "Autism advocates" refer to the exact opposite of what you described. In the US Autism Advocacy means believing that Autism is not something that needs to be "cured," that it is not always a disability, but who someone is. (This is what I know to be true, having an autistic brother.) So I was ready to be up in arms after reading the title of your blog, only to find someone in agreement! I'm broken hearted to hear about the state of things regarding Autism in Canada, and hope that somehow things will change. It also gives me new motivation to work for things not getting into that state here. Hopefully we're moving in the right direction.

Thanks for your blog,

behaviorbabe said...

I prefer individuals with autism, not autistics...I find it has a negative connotation...people first language.