Saturday, November 03, 2007

Erin Anderssen does not take autism seriously

The following is what I will probably send to Globe and Mail reporter Erin Anderssen, if I can get my email to work (yes, you can blame my computer for my long lapse in blogging)--about this Globe and Mail article.

Ms Anderssen,

With respect to "Autistics: We don't want a cure" from the Globe and Mail (November 3, 2007):

When I spoke with you, I stated directly that I should not be falsely described as an "activist." Once I understood what the word "activist" meant (this did take a while, which is typical for me), I knew I wasn't an activist--something I've known for some years now. Some people have called me an activist, but some people have also called me a fraud, and neither is accurate. At the time, you agreed that you would describe me only as a researcher. Yet in your article, you dishonestly chose to falsely describe me as an activist.

My correspondence with you also shows that I had not understood what kind of article you were planning to write. But once I realized you were writing an article about a cultural phenomenon (this was not what I had understood about your article; you had been referred to me by a scientist), I stated, in writing, that I should not be in this kind of article--which tends to add more irrationality to the already irrational public discourse about autism. But you put me in your cultural phenomenon article anyway.

And while I am in your article, the factual and verifiable information I gave you, which is typical of the information many autistics publicly provide, was overwhelmingly ignored. Instead, your article depends on caricatured and harmful stereotypes of autism and autistic people.

All my statements to you about neurodiversity (a subject far beyond the scope of autism, and about which I've written virtually nothing) included the information that neurodiversity is part of the general idea that disabled people should have human rights. I gave numerous examples from other disability areas, including blindness, Down syndrome and the general area of developmental disability.

I provided you with examples of legal cases where the demands of some parents of disabled children and the interests of disabled people were incompatible. Developmentally disabled people--who would be written off as "low-functioning" by autism advocates like Harold Doherty--have used the courts to oppose those trying to deny their human and legal rights. As I wrote to you, the work of groups like People First, which I admire enormously, exemplifies what neurodiversity means: that disabled people are fully human and should have human rights, regardless of how hard some groups and individuals work to write us off.

Instead of acknowledging this view, which is commonplace among autistics, you report only the false distinction, that autism is a difference but not a disability, as if disability is necessarily something wrong and inferior. This is the opposite of what I communicated to you, and the opposite of what neurodiversity represents.

But you were only getting started: then you go to town presenting extreme and offensive views--including that autistics are superior beings with "superpowers"-- held by some autistics. These unfounded and offensive views are, as much as possible, publicly criticized and opposed by many other autistics whenever they are expressed--an essential bit of balance that you totally failed to report.

You also failed to report what should be considered extreme views on the part of autism advocates, but which are in fact mainstream views supported by major autism organizations and political parties. For example, I provided you with FEAT's statement--in the Globe and Mail--that autistics who have not received unlimited ABA-based interventions starting early in life--that is, most autistics in Canada--must be institutionalized, abused (kept in restraints), and mutilated (our teeth pulled). FEAT is Canada's most powerful and influential autism advocacy group. Their extreme public statements have not resulted in any opposition or criticism from autism advocates, and have indeed been greeted with their applause. And FEAT has full support from two of Canada's major national political parties: the Liberals and NDP, whose only objection has been to any suggestion that FEAT's positions are extreme.

I also provided you with my one-sentence position: that autistics are fully human and should have human rights; and that autistics deserve the recognized standards of science and ethics that automatically protect and benefit nonautistics--such as yourself--and without which you could not proceed safely in society, much less have a good outcome.

This is the position that Mr Doherty so vehemently opposes.

I communicated to you the important question of why autism advocates--powerful and influential leaders like FEAT and Mr Doherty--have been unwilling or unable to make their demands for services--whatever those services may be--accurately (including with respect to the existing science), ethically, and respectfully.

I communicated to you the problem of autism advocacy leaders like FEAT and Mr Doherty writing off autistic people, denying autistics basic human rights, denying autistics recognized standards of science and ethics, and successfully demanding that laws that protect themselves should not protect us. The actions of Mr Doherty and others similar, as I wrote to you, make daily life difficult and dangerous for many autistic people--just as the denial of basic rights and standards, and of the protection of the law, would make daily life difficult and dangerous for anyone. Then Mr Doherty et al. point at our difficult and poor outcomes, declare us a crisis and drain on society, and demand that autistics be eradicated.

As I wrote in response to Mr Doherty's comments on my blog about self-injury and institutionalization, he would be the first to write me off if he saw me in difficulty. He would be the first to use me as an example of why autism is a horrific disease that must be eradicated.

Indeed, as I explained to you, I have experienced being written off via the values Mr Doherty and other powerful autism advocates embody--and impose on all autistics. No doubt I'll be written off this way again. I'm well placed to understand why autistics often suffer and have poor outcomes--and will continue to so long as Mr Doherty and others similar persist in dehumanizing us, in spreading false, anti-scientific information about us, in spreading the word that we're dangerous and violent and/or frauds and criminals, in denying us rights, standards, and the protection of the law--and in writing us off.

I provided a short summary of my views about neurodiversity when I first spoke with you. I don't know much about neurodiversity, but it's easy when there's organizations like the Canadian Down Syndrome Society, which disseminates information like this:

"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."
I also told you that in a major advertising campaign (including a large ad in the Globe and Mail), the CDSS expressed their ideal that in the future, intolerance will be cured, not DS. I could have added that the CDSS utterly fails to silence or deny the worth of people with DS based on what kind of DS they have or what their apparent abilities are. I did tell you directly that only autism advocates would leap to the irrational presumption that the CDSS is really saying that DS people (unlike all other human beings) do not need assistance or services, and that DS people (unlike all other human beings) never suffer at all and never face any challenges or difficulties.

But large portions of your article are founded on this kind of irrational presumption, which would be instantly spotted as both absurd and dangerous in any other disability area.

I have no idea where this bit of your article

"They say autism should be seen as part of the “neurodiversity” needed to evolve smarter human beings
and this one

"In blog discussions, autistics sometimes even speak of themselves as a “superior species”
and many others similar ("superpowers," etc.) came from, as they (and many positions attributed to "autistics" in your article) were not sourced. But as I noted above, a lot of autistics, myself included, consider that statements like these--and many of the views ascribed to autistics in your article--range from unfounded to ludicrous, extreme, offensive, dangerous--and/or pathetic. Etc. Many of us have publicly written a lot in criticism of and opposition to these views.

Yes, you are free to choose to report claims of unfounded, offensive, etc., views held by some autistic people--from whatever sources you wish. But reporting these views as though they were representative of "neurodiversity" or of autistics is dishonest and unethical. It is in the same neighbourhood as taking David Ahanakew's (or James Watson's) extreme and offensive statements, and reporting them, without naming their source, as being representative of the views of aboriginal people (or white people). And then seriously reporting the views of non-aboriginals (or non-whites) about these extreme and offensive positions held by aboriginal people (or white people).

The Globe and Mail should print a correction, clarification and apology. First, a correction--of the false information in your article that I'm an activist, which you dishonestly reported. Second, a clarification--to make it clear that many of the views you have ascribed to "autistics" or associated with "neurodiversity" are regarded by many autistics, myself included, as ranging from unfounded to offensive and dangerous, contrary to the strong and misleading impression given throughout much of your article. Third, an apology--for the problems caused by the false information printed in your article, as well as for recklessly and knowingly (you did not lack accurate, verfiable information) promoting harmful stereotypes of autistic people as a group.

I realize this request is ridiculous. It belongs in an as-yet non-existent world, where autism and autistics are taken seriously. As I've written before, autism advocates trivialize autism and in so doing, harm autistic people. Autism advocates, who claim to know what's best for all autistics, do not take autism seriously and, following their powerful and influential leadership, nor has the Globe and Mail.


Michelle Dawson
Autism Specialized Clinic
Rivière-des-Prairies Hospital
University of Montréal


Michelle Dawson said...

In response to Mr Doherty's awesomely (I don't think I've ever used that word before) entitled "The wrath of Michelle Dawson"...

My wrath, if any, is directed at my own poor judgment in first agreeing to speak with Ms Anderssen, when I should have figured out that I didn't belong in the science- and ethics-free article she was interested in.

Before her article was published, I apologized to her for wasting her time--by being slow on the uptake, and poor in my judgment.

As I've written elsewhere, lesson learned.

But this doesn't mean that Ms Anderssen's article, which has consequences for all autistic people, should be above scrutiny, comment and criticissm.

On the other hand, a science- and ethics-free article is an ideal place for Mr Doherty, who is so ashamed of autistic people that he supports the Auton trial decision.

This decision denies that autistic people belong in society and in families--not unless we've undergone Lovaas ABA (no other kind will do) starting very early in life.

Auton uses the "window of opportunity" argument--either we start early in Lovaas ABA or we are doomed for life.

According to Auton, and therefore according to Mr Doherty, most autistics in Canada (we are too old to have undergone Lovaas ABA as young children) should be institutionlized. According to Auton, and Mr Doherty, we are too sick, too diseased and bizarre and repugnant (just look at us--in fact, Canada Post argued at the Tribunal that my signs of self-injury were disgusting), too disordered and disabled and shameful to be in society. Auton and Mr Doherty say we have to be locked away. Even though institutionalizing us destroys us.

And autistics who object to being institutionalized are, according to Mr Doherty, just a bunch of high-functioning mild Asperger etc., anti-ABA activists who don't know anything about autism reality. No one should listen to us, as they drag us away ("like a wild animal," they said) to the institutions where Auton and Mr Doherty say we belong.

Mr Doherty also objects to my providing information from peer-reviewed papers at a Senate hearing. This is a trend.

Mr Doherty is now not only objecting to any scrutiny or criticism of ABA-based interventions, he is objecting to anyone reporting the literature, if it doesn't agree with his views. If you report the literature, presto, you're a Mr Doherty "anti-ABA activist."

If Mr Doherty can spot a factual error in my grossly under-prepared and non-articulate never mind nerve-wracked testimony to the Senate (keeping in mind which papers were published and available at the time), I would appreciate hearing about it.

Anonymous said...

Caricature of neurodiversity - that's a good way to characterize it. I also thought there were a number of unfortunate statements in the article, which I doubt can be backed up factually.

Tera said...

I'm highly disappointed in Ms. Anderssen's "caricature of neurodiversity." Even though her directs quotes from you and Amanda Baggs (as few as there are) don't support that caricature.

I also note that Ms. Anderssen's definition of PDD-NOS (" which means [that a person] has some of the characteristics of autism, but...not severely enough to be diagnosed as strictly autistic") is factually incorrect.


Anonymous said...

Michelle--FWIW, you're not alone in the phenomena of having journalists take your original message and intent in speaking with them and twist it into something else. They are generally in the business of taking selective soundbites and putting them together into a story that often twists or completely neuters the intent of the person being interviewed. I would be very careful speaking to anyone in the media (sad, but true).

About the only positive thing about this article was that it had some contrast to the depressingly slanted series a while ago in the Vancouver Sun, which focused on the woe of parents raising Autistics, interviewed no Adult Autistics and never mentioned the fact that being Autistic will disqualify an individual or an entire family from emigrating to Canada.

Michelle Dawson said...

Hi anonymous,

I'm not sophisticated enough to understand how the media works, but the Globe and Mail provided very responsible and balanced reporting about prenatal genetic testing in Down syndrome (so did the CBC), and a fantastic op-ed piece (from Margaret Somerville) about the "Ashley Treatment." So it can be done.

I'm sure there's lousy reporting in other areas, but there are problems specific to autism.

I read the entire Vancouver Sun series (there were major articles, plus many additional articles over the course of a week). Autistics were completely dehumanized-- described as animals, as being utterly horrific and disgusting, as just naturally being violent and dangerous to others, etc.

You could hear the applause of autism advocates right across the country (if not around the world).

One of the victories of autism advocacy is that you can put anything about autistics in print. There are no standards: you can state that we should be locked up, abused and mutilated (as FEAT did), and everyone who matters (including the NDP, the Liberals--people like Senator Jim Munson) will nod their heads wisely and loudly applaud.

So instead of being seen as promoting hatred of autistics (which it did), the Vancouver Sun series has won a major award.

Autism advocates don't ever discuss the consequences of their advocacy on those who might wish to work and live in Canada--but are barred because the Canadian government does not want autistic people in Canada.

Anonymous said...

Michelle--to be clear, Canadian immigration law doesn't discriminate specifically against Autistics, but rather against anyone who might "cause excessive demand on public services". In that, anyone who is considered disabled (Deaf, Down Syndrome, Cerebral Palsy) and those who have a potentially expensive medical condition (like Cystic Fibrosis or an active malignancy) can be refused a work permit, Permanent Residency or citizenship--even having a family member with these conditions will dismiss a case (if the family member is part of the immigrating party). In the case of Autism, services are provided through the public health system, which really is like an HMO that covers all of Canada, and realistically is going to be run like an HMO. Disability is merely a pre-exisitng condition in the eyes of Canadian immigration and as such they don't want to cover people. Autism Advocacy as it is these days is not going to help this at all, but the phenomena isn't exclusive to Autism. Just wanted to make that clear.

Michelle Dawson said...

Hi anonymous,

There is 2005 a Supreme Court of Canada decision in favour of two individuals seeking permanent residency status for themselves and their families, and whose families each included a dependent child who was intellectually disabled (but not autistic). I hope you can find the decison here. In case I messed up the link, this is the case name:

Hilewitz v. Canada (Minister of Citizenship and Immigration); De Jong v. Canada (Minister of Citizenship and Immigration)

In this case, disability groups (including CACL, a group which has supported ABA parents in portraying autistics as a huge burden on society) supported the families--who were arguing that their disabled family members would not be a burden on society.

It's very hard to imagine this happening in autism.

I read this decision a long time ago. If I remember, it's mostly based on the technical issue of whether a family's circumstances can be considered in a decision about permanent residency--but don't take my word for it.

I don't know if you can read French... but if you can, see this, and this, about a father whose family was denied residency in Canada because his autistic son (who he describes as "high-functioning") was deemed to be an "excessive burden" (nearly an exact translation) on Canadian society.

You wrote, "In the case of Autism, services are provided through the public health system."

Canada's eminent autism advocates claim that autistics receive no services whatsoever under Canada's public health system.

Anonymous said...

Hi Michelle--I posted on you blog (but cannot remember my login so I'm here as anonymous). We are an American family who lived in BC from Feb 2006--May 2007 (was up there on a work permit). We had applied for permanent residency--my son was referred for Autism assessment and came back "positive" in January of 2007.

We left after basically being told that without a great deal of money we would have very little chance of being accepted for Canadian PR. It certainly wasn't worth the fight and given the prevaling climate towards Autism in Canada in general and in BC specifically, we decided to leave. We are lucky that we are American--we didn't have to go back to a repressive regime or a country that was especially hostile, we came back to a progressive city on the west coast. A place where it's going to be a lot easier for our son to be different.

I agree that Immigration Canada is supposed to look at each case individually, but realistically we were in a very bad position. We aren't wealthy and could not afford private therapy, so the suggestion of our immigration attorney to not use any of the funds we qualified for under the BC mandate was going to be very unfair to our son. In fact, just having visited a speech therapist was a strike against us. Being that the only type of therapy available in BC was ABA (overwhelmingly endorsed by every person we talked to) solidified our decision to leave.

The speech therapy our son received came from a public health center, associated with the Vancouver Coastal Health Authority. His assessment was done at Sunny Hill Health Centre for Children, which is listed as an agency of the Provincial Health Services Authority. The funding for ABA therapy offered to us came from the Ministry of Family and Child Development. Perhaps the MFCD funding is not under the public health system, but the other services certainly are. Our attorney told us that the public health funding for Autism therapy was why we would be disqualified for PR, just as one with an active malignancy would.

Although the US has it's problems and it's share of FEAT style Autism advocacy, I can say that the climate here is much different.

Keep up your work, it is sorely needed. I keep your thoughts in mind for every decision I make for my son.

Michelle Dawson said...

Hi anonymous,

You wrote, "Perhaps the MFCD funding is not under the public health system, but the other services certainly are."

That's right. And apart from the many other autism services that fall under health care, in Quebec and Nova Scotia, ABA services for autistic children are provided within the health care system.

But Canada's eminent autism advocates deny that any of these services exist. According to them, the "public health funding for Autism therapy" which was why you "would be disqualified for PR" doesn't exist anywhere in Canada.

I remember your earlier posts. It's really too bad you had to leave--definitely Canada's loss. But for your son's sake, being in the US (as you've written elsewhere, see the comments here) is probably better--and safer--than being in Canada.

Xeno said...

I have to admit I tended to think of you as part activist, but I may have been confusing activism and advocacy. Also I've seen you described as an activist elsewhere, so maybe I just subconsciously assumed you were.

Since I was a bit unclear on the definition myself, so I looked it up. Apparently an activist is someone who uses direct action to promote social or political goals. I agree that that definition does not describe what you do. Harold Doherty mentions your actions in the Auton case as an example of your activism (I guess) but that's just one event in your life. But I'm still a bit unclear about why being called an activist is bad. It may be inaccurate and dishonest, but if you stopped to take issue with every inaccurate statement about autism research or about you, you'd probably never do anything else. Her dishonesty doesn't seem like something to worry about unless being dishonestly labeled an activist is harmful. Can you explain your reaction a bit further?

One person whose views seem to be accurately represented here is Matthew Belmonte...oddly enough I ran into him twice (yesterday and today) at a conference. The first time, I was mired in some sort of exchange (I'm not sure what was being exchanged, but it wasn't information) with the goobers manning the Autism Speaks booth, when he appeared and pulled me out. (After he joined the discussion, it became increasingly rational and the rest of them seemed to lose interest.) He makes some blatant assumptions, for example that autistics lack social and communication skills; I'm a bit unclear on what makes him think that, but I got his card, so I could just ask him. I'm similarly unclear on what makes him think he could fix someone's alleged deficits while preserving their strengths, personality, etc.

Michelle Dawson said...

Hi Xeno,

Being misrepresented by the major media (the Globe and Mail is Canada's NYT) is always harmful, and in this case, the journalist was blatantly dishonest. I've always tried to comment publicly when I've been misrepresented in the major media. The Globe and Mail has done it to me before; I wrote about this on TMoB (I didn't have a blog back then).

I've stated elsewhere that I'm not an activist, in response to direct questions about this (I did have to think about it a lot, again, for this reason). I'm also not part of any "movement." I don't want to be accused of either. Both descriptions misrepresent what I'm able (or unable) to do.

All this kind of political/cultural stuff is both way too complicated/sophisticated for me and light years over my head. Anyone who's witnessed me trying to function in even a friendly political/cultural context would completely agree.

I've noticed that even when I've been involved in law-type stuff or communicated with political people, I just kept doing science and ethics (the two things I can do--notice that both are methodologies).

This might explain what a failure I've been at the political level, and some of the problems I've had at the legal level (e.g., spectacular failure at the Tribunal).

It did take me a while (as I wrote) to figure out what "activist" means--my original take on what it meant turned out to be totally wrong--and that this description didn't fit me. Not only have I never been to a demonstration or participated in any direct action, I'm not a member of any organization--though I might join INSAR if I can figure out the logistics.

I'm way too limited to be an activist. Mostly, all I do is source material. I find things out, slowly. I don't want to have to deal with people who believe I can function at levels where I don't have a clue.

Also, there hasn't been a lot of choice in whatever I've done, not since I naively stepped out of the closet and all hey broke loose. Most people would do quite a bit to keep their freedom, and in this respect I'm no exception.

Pepper said...

I agree with your blog, Ms. Dawson and am a nonautistic with a few autistic friends. As a speech-language pathologist, how can I best support the children (and families) I serve? What type of 'education' do I need to be providing to these parents to help them see the positives of their child's personality (most of them focus on the negative aspects). I love my job and I adore these children. They have taught me so much. What advice would you give?

Anonymous said...

Pepper--as a parent I found the Hanen Centre books very positive--"More than Words" is a great place to start. It was recommended to us by our Canadian SLP--over time I was quite surprised that she had recommended it, as in the end she really didn't seem to like ASD kids very much. Nevertheless, the Hanen approach is very child-centered, moreso than other methodologies I have seen.

Anonymous said...

Michelle--apologies if you have posted this info elsewhere but you have mentioned a paper that shows the best outcomes for Autistics was before the recent change in diagnostic criteria and the push for ABA therapy--is this paper published yet anywhere and/or do you have an abstract available?

Michelle Dawson said...

For Pepper Basham, thanks for dropping by. I suggest starting with Morton Gernsbacher's paper Toward a Behavior of Reciprocity, which includes some information about a successful non-ABA randomized controlled trial (Aldred et al., 2004; this successful pilot has now been expanded into an ongoing 144-child multi-site RCT in the UK). This is not the Hanen program, which is a related but more limited approach, and which also has some science to support it (e.g., McConachie et al., 2005).

Some other papers (both peer-reviewed and less formal) from Dr Gernsbacher's autism research page might interest you--see this page. E.g., there's a link to our in-press chapter about learning in autism.

For the 2nd Anonymous, I've mentioned adult outcomes reported in peer-reviewed journals, when these outcomes are tied to information about early development. Then it's a matter of reading the literature (not just one paper).

See our in-press learning chapter (linked to above) for a bit of relevant information and some of the possible references.

Anonymous said...

Hi Michelle,

Maybe I am misreading things, but I don't think it is fair to characterise FEATs position as meaning autistic people must be institutionalised, mutilated etc. Certainly not on the basis of the quotes you link to.

"Without treatment, kids like this are usually institutionalized by the time they're adolescents."

It seems to me that this quote is merely stating what often happens and could not be construed as meaning the speaker thinks this ought to happen.

Anonymous said...

Except that it isn't merely stating what happens. It isn't true at all, which is why Autism advocates in Canada can be accused of saying it's what should happen because the foundation of all their claims would be removed if it was pointed out just how untrue it is.

Part of the reason why Autistic people are institutionalised at all is because of the often repeated assertion that this is what happens if some intervention or other isn't used. It has been pointed out to these people that their words have a real and devastating effect on other peoples lives. They've not stopped, we can safely assume they are absolutely all for institutionalising any Autistic that hasn't had the therapy they prescribe.

Anonymous said...

I have been following the fallout of the Globe and Mail Article.

I find it disconcerting after a quote from you, the next paragraphe staing some people with HFA/Aspergers think they`re superior on certain forums ,blogs.(I don`t have the exact quote).

What is very disconcerting there is new discrimination towards autism on the commentary part of Globe and Mail, New Scotsman etc (such as dollar and cents...we didn`t ask your "taxdollars." Orsomeone saying Asperger is non-syndrome for bad parenting. Or a certain woman saying "Asperger is not autism -it`s a social disorder." Misinformation, ignorance but hatred.

There is real hatred directed at ASPIES. Mr.Doherty`s quote"I don`t want someone with Asperger`s telling me what to do." (again, don`t have the quote verbatim).

I check out Mr.Doherty`s blog.There`s alot of hatred there against "so-called neurodiversity movements ", "ideologues" or someone's post "neuroinsanity."
It seems Mr.Doherty is obsessed with Michelle Dawson if you see how many of his entries. Not only is it personal and vendicative (he seems to dismiss Dr.Mottron, Morton , even Acceptance Project parents like Wolford purely because they are associated with Dawson).Also because Mottron-Dawson spoke at the Senate root of this obsession really.

His faulty logic: High functioning autistics shouldn`t speak for my son, low-functioning. He is using the argument that Auties say parents shouldn`t take the hegemony on autism sinc ethey don`t have autism. He seems very ignorant when he doesn`t seem to know Michelle was low functioning who underwent such behavioural treatments.
Also he attacks autistic who make a career from autism. How many cottage industyries did PARENTS make off their children`s autism (books,speakers,experts,publishing houses, magazines, toys,for profit associations). Does he want his son to be unemployed inspite of his talents?

Anonymous said...

I also forgot to mention how on Doherty`s blog he criticizes Dawson and Mottron autism intelligence work appearing in all those American articles recently.It incenses him that they get glory and on some primordial level, they quashed his dream to potential free services.Hence, the vitriol and obsession on MD.Check out the key words section taht include her name even when not entirely about her.

He thinks the methodology was faulty (because Michelle is in there). He says what kind of autistic did they choose as if he were some researcher?Maybe he doesn`t want to know his son has a higher IQ with a different test? This is all crazy.All parents want the best for their children.
He thinks Dr.Mottron only specializes in savants and high functioning from perusing a google scholar search.Obviuously, he never stepped into Rivières des Prairies Hospital- low functioning autistic kids are all around, treated with respect,TEACCH...
You see, sometimes autism is used to emcompass all shades of the spectre.
Dr.Mottron is sensitive since he,too, is a parent.But Doherty doesn`t know this.

Why does Mr.Doherty hate High functioning autistic and Aspies?
I want the best for low-functionning autistic kids too. I wouldn`t say things to discriminate against them.Parents do the best they could - try all those expensive therapies with the best intentions in a trial and error.It`s a sad day when parents of autistics turn on adult autistics who don`t have secret agenda or wares to sell.
I am sure his son has that untapped intelligence the duo discovered.He doesn`t want to admit it because he is hurt (services) so he misplaces his anger onto the duo.

He hates us.In turn, who else does he hate for his son`s autism?

Anonymous said...

Sorry, for the spelling mistakes and frenchisms (I am working on a French keyboard):

He thinks the methodology was faulty (because Michelle is in there). He says what kind of autisticS did they choose as if he were some researcher?
How objective, he opines, if the autistic "ideologue" is the researcher? As your pre-conceived notions get in the way of ethical reviews ....

I wanted to send him a note directly about my concerns but I`d be bait.I am sure he comes here to read being he is obsessed by you.
MD, you are so alluring....

I have a serious question from this Globe fallout:
How do auties protect themselves when being interviewed by a journalist? We might naively make a slip-up and it be used against us out of context.
Since you have lots of experience, do you have any tips for us just in case we might not be aware of the journalist's or filmmaker's hidden agenda?

Anonymous said...

In the last post on the matter,we know Mr.Doherty is reading this blog.To deflect the onus - he thanks this blog for mentioning him to get parents on board with his blog, his views.He will longer put your name in the key words.He has toned down the rhetoric. Uniting the ND `movement`...
And surprisingly, he even adds a blurb on missing Asperger`s.He cares about us now.
If anything, this article made him aware - we have feelings too.

Here is how many times her name pops up in the past in his blog...

Anonymous said...

Except that it isn't merely stating what happens. It isn't true at all...

Part of the reason why Autistic people are institutionalised at all...

Well which is it? Either autistic people are institutionalised in Canada or they are not?

If the FEAT people can be accused of overplaying the risk of institutionalisation, then you are surely leaving yourself wide open to a charge of deliberately misinterpreting that, in order to push the neurodiversity agenda. It is patently absurd to suggest that FEAT want their children instituionalised and mutilated and if neurodiversity activists continually push that line, it must make neutral observers wonder about the objectivity of some of their other positions.
If Mr Doherty, for example, is to be accused of an irrational hatred for neurodiversity, it behooves neurodiversity activists not to succumb to an irrational hatred for ABA, for example.
By all means, debate the evidence and let every family decide based on that, but some of the characterisations here lapse into the realms of crude propaganda.

Michelle Dawson said...

Hi Coc,

FEAT's long-standing and forcefully disseminated position is that autistics can only stay out of institutions by undergoing unlimited Lovaas ABA from very early in life.

Indeed, FEAT has publicized their position that unlimited Lovaas ABA is essential to "save your sick child's life", where "your sick child" refers to any autistic child. In the same press release, FEAT claims that,

"Untreated autistic adults must be cared for by the Government, 24-hours a day, for the rest of their lives, often in extremely expensive, total-care institutions."

By "untreated," FEAT means all autistics who have not undergone unlimited Lovaas ABA starting very early in life.

Most autistics in Canada are too old to have undergone Lovaas ABA starting as very young children.

Many younger autistics have not had unlimited Lovaas ABA starting early in life, for multiple other reasons.

According to FEAT, autistics who have not had Lovaas ABA starting very early in life, which is most autistics in Canada (I'm repeating myself, but it seems necessary), must be institutionalized. FEAT provides no other possibility.

The only place autistics belong, according to FEAT, is in institutions--unless we have undergone unlimited Lovaas ABA starting very early in life. But, to repeat myself again, most autistics in Canada are not in this situation. We cannot go back and re-live our early childhood, to meet the criteria FEAT has set for autistics to live in society and in families, rather than being segregated and shut away in institutions.

Then in the Globe and Mail, FEAT added that not only do autistics need to be institutionalized unless we receive unlimited Lovaas ABA starting very early in life, we must be kept in restraints and have our teeth pulled.

Here is the quote from Jean Lewis in the Globe and Mail:

"Without treatment, kids like this are usually institutionalized by the time they're adolescents. They're living in restraints, living in diapers. They have to have their teeth removed because they bite."

Again, "treatment" according to FEAT means unlimited Lovaas ABA starting very early in life.

FEAT's position re institutionalization is amply represented in their own documents as well as in the jurisprudence (the Auton trial and appeal decisions, e.g.).

Michael Lewis of FEAT (he is also 1st vice president of ASC and president of ASBC) has further taken the position that his own child would have to be institutionalized immediately if his child's ABA program stopped. At the time Mr Lewis made these public statements, his child was 11 years old.

That is, according to FEAT and other similar autism advocates, autistics not only belong in institutions if we don't undergo Lovaas ABA starting very early in life, it's possible that we must also be instantly institutionalized if we have started Lovaas ABA as young children and stay in it until past age 10, but our ABA program then stops.

Meanwhile, as I reported here, the Globe and Mail has also published a piece by a Canadian ethicist, in which this is stated:

"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 as I pointed out, "no one is appalled or even raises an eyebrow when it is recommended that most autistics in Canada... be abused this way."

Meanwhile, there are groups which oppose institutionalization. See this re a recent legal decision. See also the work of
People First of Canada
, whose position is that,

"We know that people, regardless of type or extent of disability, do not need to live in institutions."

...much less need to be kept in restraints and have our teeth pulled, as FEAT claims is necessary for most autistics in Canada.

Neurodiversity, an idea which Mr Doherty opposes, is part of the general idea that disabled people should have human rights. As I've pointed out before, this only becomes controversial when the disabled people are autistic.

Also, re that "irrational hatred of ABA," please provide examples from my publicly-available writing. I've been a much harsher critic of cognitive science and neuroscience in autism than I have been of ABA in autism. Does this mean that I have an "irrational hatred of cognitive science and neuroscience"?

And finally, please show me where I wrote "that FEAT want their children instituionalised and mutilated." FEAT's positions (and the positions of other similar autism advocates) are fully on the record. All I do is report these positions, providing links or references to sources so everything can be verified--as I've again done in this comment.

Anonymous said...

Hi Michelle,
My comments were mainly directed at Lucas, but unless s/he responds otherwise I hope it's ok to treat your response as if it were a continuation of the dialogue.

You are indeed repeating yourself, but no, it is not necessary. Especially if we consider the point I made:

It is patently absurd to suggest that FEAT want their children instituionalised and mutilated.

This interpretation can only be sustained by taking a phrase like "autistic children must be institutionalised" as meaning the same thing as "we want autistic children to be institutionalised". With all due respect, I don't think you really believe this to be the case. You might legitimately accuse FEAT of overplaying the risk of institutionalisation as a way of pressuring the State to fund what they regard as desperately needed ABA, but of course the reason they so desperately crave ABA, is as a means of avoiding the institutionalisation you appear to think they recommend. The quotes and links you use all use words like "must" and "will" which I don't feel in this context can be taken as conveying aspirational intent on behalf of FEAT.

I agree with you that neurodiversity is part of the general idea that disabled people should have human rights, and that is an idea that any civilised society would support, in theory at least, if not in practice. But that is not all that neurodiversity is. Not wishing to speak for Mr Doherty except to say I doubt he has any problem at all with human rights for people with disabilites. What he seems to oppose (and I certainly oppose) is the idea that autism is not a disorder, some of the disabling aspects of which cannot or ought not be mitigated by intervention, medical, educational or otherwise. Whether that opposition is to a position you yourself explicitly hold or not is another matter.

I didn't specifically accuse you of an irrational hatred of ABA, I merely cautioned neurodiversity activists of the dangers of succumbing to same. I think it's fair to say that readers can make their own judgements on your position regarding ABA.

Finally, in answer to your finally as to where you "wrote "that FEAT want their children instituionalised and mutilated", I would draw your attention to paragraph 9 of your letter to Ms Anderssen, which clearly implies this, an implication Lucas is more than happy to run with.

Michelle Dawson said...

Hi Coc,

In paragraph 9 of my letter to Ms Anderssen I wrote:

"For example, I provided you with FEAT's statement--in the Globe and Mail--that autistics who have not received unlimited ABA-based interventions starting early in life--that is, most autistics in Canada--must be institutionalized, abused (kept in restraints), and mutilated (our teeth pulled)."

This is FEAT's position. I went on to point out that this position has not generated any opposition from autism advocates. To the contrary, there has been applause, and now an example of a person, yourself, who defends this position and those who have promoted it. Those are not the priorities I would choose.

But I did not write that, "FEAT want their children instituionalised and mutilated." You wrote that, according to your own views. What FEAT wants is amply on the record. I'm not sure if you need me to repeat it.

But it looks like I need to repeat what I repeated several times already. I'll try to organize it a bit better.

1. FEAT starts with the premise that autistics do not belong in society or in families, but in institutions.

2. FEAT then takes the position that this natural fate of autistics--institutionalization--can be averted only if autistics undergo unlimited Lovaas ABA starting very early in life.

3. This position of FEAT's is founded on the premise that autistics who have not undergone unlimited Lovaas ABA from early in life must be institutionalized.

4. Most autistics in Canada have not undergone unlimited Lovaas ABA starting very early in life.

5. Therefore, FEAT's position is that most autistics in Canada must be institutionalized.

Constrast FEAT's position with the position of
People First of Canada
, which I'll repeat one more time:

"We know that people, regardless of type or extent of disability, do not need to live in institutions."

FEAT has never allowed for any other way, besided unlimited Lovaas ABA starting very early in life, for autistics to stay out of institutions.

FEAT therefore gives all autistics two options:

a) to undergo unlimited Lovaas ABA starting very early in life; or

b) to be institutionalized (where--FEAT more recently has claimed--we have to be kept in restraints and have our teeth pulled).

FEAT occasionally comes up with variations on this theme (see some quotes here). They again amount to autistics having two choices: unlimited Lovaas ABA or doom.

For some figures (including from Drs Lovaas and Smith--this being Tristram Smith, who was one of FEAT's expert witnesses in Auton) about institutionalization and autism, see the text following the quotes here. The population figures are a bit out of date (because they predate the 2006 census figures), but they are not far from accurate. Sources, notes, and references (if you want to look things up) are at the end.

My position, the one which Mr Doherty so vehemently opposes, is stated in my letter to Ms Anderssen. I'll repeat it again: Autistics are fully human and should have human rights; and autistics deserve the recognized standards of science and ethics (including professional ethics) that automatically protect and benefit nonautistics--such as yourself--and without which you could not proceed safely in society, much less have a good outcome.

Another part of that position, which Mr Doherty also opposes, is that services for autistics, whatever those services may be, should be asked for accurately (including with respect to the existing science), ethically, and respectfully.

I have always wondered why FEAT and other similar autism advocates have been and continue to be unwilling or unable to make their demands for services accurately (including with respect to the science), ethically, and respectfully.

FEAT's position re institutionalization has never been founded in fact. My challenge for anyone to pruduce a primary source (from peer-reviewed papers) for FEAT's position re institutionalization has gone unanswered. This raises the question of why FEAT has been so foreceful in insisting that autistics belong in institutions.

As for the human rights of disabled people, Mr Doherty is a lawyer, and I'm sure he's familiar with the Eldridge Supreme Court of Canada decision, which does not state that disabled people are disordered and must undergo unlimited treatment to make us become or resemble nondisabled people, but instead that:

"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."

In my Auton factum, I referred to Eldridge:

"The Appellants in Eldridge were deaf individuals seeking the funding of interpreters such that they may access health care. The Appellants were not required to seek “medically necessary” treatment to either make them non-deaf, or to train them to act like non-deaf persons. It was not said that because they are deaf, if they do not strive to become non-deaf, they are doomed and will be institutionalized. It was not said that because their communication fails to be typical, they do not communicate at all and cannot participate in society."

Michelle Dawson said...

I don't have my notes with me, and data that haven't been published yet have to be treated with caution. But for some scientific perspective about FEAT's position--there was Catherine Lord's IMFAR 2007 presentation.

This was a further follow-up with the large sample of 100+ autistics and a smaller number of PPD-NOS kids, who were first assessed at age 2 (e.g., see Lord et al., 2006). At IMFAR 2007, Dr Lord provided data about outcomes to the average age of 15.

According to existing papers, few if any of these autistic children were in ABA programs, starting early in life or at any other time.

By adolescence, a small number of these children were not living with their families. They were in some kind of residential placement. But Dr Lord pointed out that in every case, the reason for this was not that the child was autistic. It was due to serious problems in the family that did not have to do with the autistic child.

Dr Lord also demonstrated that the common presumption that autistics become impossible in adolescence is false. To the contrary, the majority of autistics in her sample showed steady progress in the measures Dr Lord chose for her study.

Dr Lord also provided data showing that the proportion of autistics at that age (average of 15yrs) who were considered to have "aggressive" behaviours was 10% for those who Mr Doherty would consider "high-functioning" and "mild"--and 3% for those who Mr Doherty would consider "low-functioning" and "severe."

Again, I'm working from memory (so if I've made an error, I hope someone corrects me), and these presented data have not been published yet. But they were memorable, in the general area of "autism reality."

Anonymous said...

Thanks Michelle for taking the time to spell all this out. It seems to me you are happy to swim in semantics, to the extent that you apparently bridle at the charge that you were accusing FEAT of promoting institutionalisation - please show me where I wrote that FEAT want their children instituionalised and mutilated - and yet come back with your 1,2,3,4,5 which clearly implies that FEAT dearly want children to be institutionalised (and mutilated!!!)
This is an absurd distortion of FEAT`s position, which at worst, can be accused of playing up the risks of institutionalisation in order to access funding for the ABA.
Indeed, later in you post you do seem to lay this charge at FEAT's door:

I have always wondered why FEAT and other similar autism advocates have been and continue to be unwilling or unable to make their demands for services accurately (including with respect to the science), ethically, and respectfully

As for your position "Autistics are fully human and should have human rights; and autistics deserve the recognized standards of science and ethics (including professional ethics)" - I've never met a parent of an autistic child that would disagree with that, and I certainly don't.

I do however have a problem with the second part of your position "... that services for autistics, whatever those services may be, should be asked for accurately (including with respect to the existing science), ethically, and respectfully." Since people with disabilities ought to have full human rights, they should not have to be asking for services that other citizens are accorded as a matter of course. In most countries of course, they do have to ask, and often struggle against the full machinery of state to access the most basic of services. Rather than focus on one aspect of how one group conducts that struggle, we might more productively challenge those in authority who actively, in word, but more significantly in deed, deny the rights of people with disabilities.

Michelle Dawson said...

Hi CoC,

Yes, FEAT has promoted institutions as the only place most autistics in Canada (autistics who have not had unlimited Lovaas ABA starting very early in life) belong. There is ample evidence of this.

If my portrayal of the two options FEAT has promoted for autistics (unlimited ABA or doom) is inaccurate, please provide evidence of other options FEAT routinely promotes for autistics.

There is no evidence of FEAT taking the position that autistics who have not had the one treatment FEAT promotes must not be permanently institutionalized--or otherwise permanently written off.

There is evidence that, in Canada's national newspaper of record, FEAT took the position that without unlimited ABA starting early in life, autistics must be institutionalized, kept in restraints (abused), and have our teeth pulled (mutilated).

There is no evidence that FEAT or other autism advocates have criticized this position, and you have vigorously supported it.

This is not about semantics. Many of us have lived the extreme consequences of FEAT and other powerful and influential autism advocates so successfully spreading the word that autistics are sick, are inherently destructive and violent (we bite, etc.), and/or belong in institutions. I've also lived the consequences of the presumption that autistics must be put in restraints. Now I wonder if next time they'll pull my teeth.

Numerous autism advocates (including but not at all limited to FEAT and other autism advocacy parents) have opposed my position that "autistics are fully human and should have human rights; and autistics deserve the recognized standards of science and ethics (including professional ethics) that automatically protect and benefit nonautistics." This opposition is on the record, in quantity.

The Auton and Wynberg trial decisions, universally supported by autism advocates (parents and others), are representative of the standards of science and ethics (including professional ethics) that autism advocates consider autistics deserve. So are the various applications and written and oral arguments produced by autism advocates in both cases as they proceeded to higher courts. So is the testimony of autism advocacy groups including FEAT in two sets of senate hearings (the 2003-2005 mental health/mental illness hearings; the 2006 autism treatment funding hearings). So are the speeches by autism advocacy political leaders (e.g., Senator Jim Munson; the MP Blair Wilson, whose office told me his position was based on information from FEAT; etc.) in parliament. Etc.

In Canada, services provided by governments, and laws, including human rights laws, arise from demands made by citizens. I've suggested that autistic citizens (including those not in ABA programs--those who FEAT writes off) should have a say in how autistics are regarded and treated, and in laws and legal proceedings that have consequences for us, but FEAT and other autism advocates have strongly opposed this.

The question remains why FEAT and other autism advocacy leaders have been unwilling or unable to make their demands for services accurately (including with respect to the existing science), ethically, and respectfully.

Contrast with the Canadian Down Syndrome Society, who I quoted in the post you are commenting on. Contrast with People First of Canada, an organization concentrating on the issue of institutionalization, which has concluded that "people, regardless of type or extent of disability, do not need to live in institutions."

And do not have to live in restraints. And do not "have to have their teeth removed because they bite."

Anonymous said...

FEAT has promoted institutions as the only place most autistics in Canada (autistics who have not had unlimited Lovaas ABA starting very early in life) belong. There is ample evidence of this.
If there is ample evidence of this, you haven't linked to any of it. Unless I have no idea what the word 'promoted' means in Canada. Do FEAT run or organise such institutions? Do they fundraise for the mutilation of their children?

If my portrayal of the two options FEAT has promoted for autistics (unlimited ABA or doom) is inaccurate, please provide evidence of other options FEAT routinely promotes for autistics.
This is absurd. Saying that FEAT promote ABA or institutionalisation is like saying fundamentalists promote Heaven or Hell, with an implication that they are equally happy with whatever option is chosen for them.

Michelle Dawson said...

Hi CoC,

There are groups in Canada that work against institutionalization, and work against abuses in institutions, rather than promoting institutions and abuses (restraints, teeth-pulling) as the necessary and natural fate for some kinds of disabled people.

These groups promote the ethics- and evidence-based position that no disabled person (regardless of type or extent of disability) belongs in an institution or needs to be denigrated, dehumanized or abused (e.g., kept in restraints, teeth pulled). These groups include People First of Canada.

Then there are groups in Canada like FEAT whose unethical, non-evidence-based position is that a large group of disabled people (autistics) is doomed and must be institutionalized--unless we undergo one specfic treatment starting early in life.

As I've repeated many times already (as I've repeated many other things), most autistics in Canada do not and cannot ever meet the criteria FEAT has set for autistics to live in society and families, rather than being imprisoned (and possibly abused and mutilated) in institutions.

Most autistics in Canada do not and cannot ever meet FEAT's criteria for autistics to avoid certain, permanent and utter misery and doom--to avoid being regarded and treated as total write-offs.

FEAT is therefore promoting the permanent instutionalization (and permanent writing off) of most autistics in Canada. FEAT offers no other options.

FEAT refers to autistics who have not had unlimited ABA starting early in life as "lost" (too many examples to list). Entire generations have been "lost," according to FEAT--because we have not had the one treatment FEAT promotes. It is too late for us, for most autistics in Canada. We are total write-offs, according to FEAT.

FEAT promotes one specific autism treatment by claiming that without it, autistics are doomed and can only live imprisoned in institutions (where more recently FEAT claims we must live in restraints, and "have to have" our teeth pulled). There is no other possibility, according to FEAT. FEAT promotes Lovaas ABA by promoting institutions as the natural home of autistics who do not undergo this one specific treatment starting very early in life.

FEAT's position is neither evidence- not ethics-based. This is a subject I've written about extensively. But here's a very small taste of a very few of the problems with FEAT's position:

1. There is no empirical evidence published in peer-reviewed journals about the adult outcomes of children who underwent Lovaas ABA starting early in life. The only follow-up into school ages is from a study dependent for its results on the use of contingent aversives (McEachin et al., 1993).

2. There is empirical and descriptive evidence in peer-reviewed papers that institutionalization is extremely harmful to autistics. Institutions destroy autistics.

3. The best adult outcomes reported in the peer-reviewed literature continue to belong to children who grew up before the availability of comprehensive early ABA programs, and who as children met the narrowest, strictest autism criteria ever devised (i.e., their early development was highly atypical).

4. There is a peer-reviewed paper going back some decades now, showing that autistics in a particular intervention program had a very low rate of institutionalization. But this intervention program was not Lovaas ABA or any other kind of ABA.

Thank you for your analogy of FEAT consigning autistics to heaven (unlimited Lovaas ABA starting early in life) or hell (doom, institutions)--the only two possibilities FEAT offers to all autistics. Your necessary implication, that FEAT has made Canada hell for most autistics (most of us are not and cannot ever be elegible for FEAT heaven), is interesting.

Anonymous said...

You're welcome Michelle :-)
I hope however, that it is clear that I regard the analogy as highlighting the absurdity of your position.

Michelle Dawson said...

Hi Coc,

I disagree that opposing the denigration, institutionalization and mistreatment of disabled people (in this case, autistics who have not received the one treatment FEAT promotes--that is, most autistics in Canada) is an "absurdity."

I also disagree that promoting options other than permanent doom, institutionalization and abuse for autistics who have not had the one treatment FEAT promotes (that is, most autistics in Canada)--is an "absurdity."

Casdok said...

An interesting read.

Larry Arnold PhD FRSA said...

Well Michelle, this year might see me joining INSAR myself I am qualified to do so at least, and even worse I have submitted an abstract for this years conference in London that I do not suppose you would like.

I can assure you of one thing, it has nothing whatever to do with ABA and will be well referenced, however I know in reality the likelihood of ever getting to present it is infinitesimall.

No. Autism advocates are at work and by that I mean autistic advocates, I wish you would revise your terminology, believe it or not people are looking to you to do something at the IMFAR conference this year to challenge the curebies.

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