Monday, October 13, 2008

Autism advocacy as public policy: an example

Canadians are voting in a general election tomorrow. All major national political parties in Canada (Conservatives, Liberals, New Democratic Party, Green Party) are autism advocacy parties. That is, they are part of the widespread effort to make the world as free of autism--of autistic people--as possible.

Three of these parties have agreed that autistics contribute nothing to society as autistics, and that ideally our existence should be prevented.

The fourth party, the Green Party, has welcomed and adopted the views of their star candidate, the ex-Liberal MP Blair Wilson. Mr Wilson's public position is that the existence of autistics is a "blight on society," a blight against which Canada must take action. And Mr Wilson's view is that only autistics who undergo ABA-based interventions starting early in life have humanity. The rest of us--most autistics in Canada--don't. We have no humanity and aren't at all human.

Without exception, the positions of Canada's major national political parties entail writing off most autistics in Canada--those of us who haven't received unlimited ABA-based interventions starting early in life. The parties differ merely as to who exactly should pay for which aspects of the fight to achieve their collective ideal: a Canada free of autistic traits and abilities, and which has no autistic people at all.

In my search for someone I could vote for, I was given a closer look at one party's position. I was generously sent an internal Liberal policy document about autism.

This document includes information about the CIHR, about collaboration with autistic-free organizations whose goal is to prevent autism. But the Liberal's autism policy document is dominated by uncritical promotion of the premise that ABA-based interventions are the only effective "medically necessary" autism treatment, without which all autistics are expensive write-offs.

The sum total of the evidence provided by the Liberals to support this premise is Lovaas (1987). In this study, autistic preschool children in the experimental group were systematically hit--and hit "hard" according to two behaviour analysts involved in this study (Leaf & McEachin, 2008). This systematic hitting of very young children was, according to the design of Lovaas (1987) and its author, a crucial aspect of the experimental group treatment. A small-N study with major problems in reporting and methodology, Lovaas (1987) is not a true experimental design, and represents the standards of behaviour analysis circa 38 years ago.

It also apparently represents the standards of science and ethics that Liberals in Canada believe autistics deserve.

The Liberals go on to make this claim:

"Currently, statistics show that 90% of afflicted individuals are placed in institutions and residential facilities, placing increasing pressure on Canada’s education and social service programs."
This isn't the first time Liberals have denigrated developmentally disabled people by using what the Canadian Down Syndrome Society calls "inappropriate" and "offensive" language. To the Liberals, autistics are "afflicted individuals" and our proper place is in institutions. The 90% figure, an autism advocacy staple, exists nowhere in the history of autism research (for a review, see Howlin, 2005), much less in the present. Instead, this fictional figure reflects the extreme autism advocacy prejudice that autistics do not belong in society--surely, at least in part because we are presumed to be a threat to others--and instead must be locked away in institutions.

The Liberal Party, like the NDP and the Greens, have fully supported the autism advocacy organization FEAT (also known as "Medicare for Autism Now!"), which promotes the view that not only must most autistics in Canada be institutionalized, we must be kept in restraints and have our teeth pulled.

The Liberals elaborate the extent of the services required by all untreated autistics:

"With treatment, it is argued that the rate of institutionalization will be greatly diminished, and the current costs of over $300,000 per untreated autistic individual per year will be dramatically reduced."
The only approach to autism promoted in this document is Lovaas-type ABA as medical treatment, which must start early in life. This leaves the majority of autistics in Canada as "untreated" more-than-$300,000-per-year drains on society.

From recently reported figures, in Ontario, it costs between $20,000 and $78,000 per year (average is $49,000) for a developmentally disabled person to stay in a group home, and ~$100,000 per year to keep a developmentally disabled person institutionalized. Even a private sector institution, the Judge Rotenberg Center in the US, with its high level of restrictive supervision and its notoriously intrusive intervention program (including the use of strong aversives), is reported to charge ~$220,000 per year per inmate, many of whom are adults, many of whom are autistics.

So according to the Liberal Party of Canada, most autistics in Canada contribute nothing at all to society, in our entire lives. But beyond this, we just naturally have to be very expensively locked away into very secure--given the enormous cost--institutions (of any size) where we are constantly supervised and kept under control, apparently--given the enormous cost--by numerous round-the-clock staff. For our whole lives.

Using the currently-popularized autism prevalence figure of 1 in 150, there are ~150,000 autistic adults in Canada, and ~50,000 autistic children. Virtually all autistic adults in Canada are "untreated" (we did not receive Lovaas-type ABA starting early in life) and therefore we must, according to the Liberals, each be costing society at least $300,000 per year. That adds up to ~$45 billion per year. This is about the total amount the federal government transfered to the provinces in the 2008 federal budget. And that's just to pay for us untreated autistic adults. This doesn't include the costs of younger autistics who might also for various reasons be untreated by Lovaas-type ABA.

These extraordinary costs would be paid by the provinces. In Ontario, there are ~60,000 autistic adults. According to the Liberals, the Ontario government would be paying more than $18 billion per year, just for the costs of autistic adults. This would be about one-fifth of Ontario's total program spending.

The Liberals, however, rush in with their solution to the terrifying and appalling situation they have invented:

"It is important to note that on the flip-side, the cost of a science-based program for every child diagnosed at the age of 2 years is typically $60,000 per year, for the first three years. Some children no longer require treatment after this treatment period; some of the children may require treatment for a few more years, and then there is a minority of children who may need some level of treatment for their entire childhood, not unlike a child who may need long-term chemotherapy. However, these treatment costs typically decrease over time for the vast majority of children."
Again, by "science-based program," the Liberals are referring to Lovaas-type ABA as medical treatment. They contend that all autistic children do well in this treatment, and provided it continues if necessary until the end of childhood (where it apparently stops), Lovaas-type ABA is always successful in producing an autism-free individual.

There are no credible (in the peer-reviewed literature) sources for what the Liberals claim. Indeed, Lovaas (2003) makes the data-free claim that autistics who do not achieve "normal functioning" in ABA programs by age 7 (and the majority of autistics don't) will remain totally dependent on ABA programs for the rest of their lives.

There is no peer-reviewed paper that reports data about the adult outcomes of a controlled trial of Lovaas-type ABA (or any kind of ABA). The only follow-up into school ages follows-up the aversive-based treatment in Lovaas (1987; McEachin et al., 1993), and does not report that all autistic children in the experimental group eventually became free of autism and therefore had good outcomes. The only true experimental design (where the intended comparison between randomized groups was actually carried out) in the 47-year history of ABA-based autism intervention research, reported largely poor results in a small-N study, particularly for children with the specific diagnosis of autism (Smith, Groen & Wynn, 2000, 2001; don't forget to read the authors' errata). A recent uncontrolled trial, often falsely touted as a "replication" of Lovaas (1987), showed that the majority of children not only did not display improvement in their scores on any of the chosen outcome measures, they had significant losses in several measures (language, adapative abilities) over 4 years of intensive ABA (Sallows & Graupner, 2005). A recent community-based study showed that while preschool autistic children had widely varying individual short-term outcomes, their outcomes did not differ according to whether they did or did not receive Lovaas-type ABA (Magiati et al., 2007; see also Eaves & Ho, 2004, for similar results in a Canadian study). And so on.

With similar disregard for science and ethics, the Liberals claim that ABA-based autism interventions are just like chemotherapy. This is in concert with their false contention that ABA is a medical treatment, researched and provided by medical professionals according to medical standards. But this also demonstrates how the Liberal Party of Canada sees autism: as a cancer, that has to be gotten rid of, from individuals and society. In the Liberals' view, there is everything to be gained and nothing whatsoever to lose if public policy dictates that autism must be totally gotten rid of, just like cancer.

The Liberals go on to confirm how much money would be saved if autistic children all undergo Lovaas-type ABA as a medical treatment:

"By implementing ABA/IBI therapy into the category of insurable health services, provinces and territories will save approximately $240,000 per autistic individual per year, with a declining cost scale associated with successful treatment outcomes."
This Liberal Party autism policy document is so distant from accuracy, from recognized standards of science and ethics, that it's difficult to respond to (where do you start?). And indeed, I've been informed by Liberals, numerous times, that any criticism of the views of autism they widely disseminate is outrageous and unwelcome--how dare I. This is another hallmark of autism advocacy: any scrutiny or criticism of claims made about how autistics should be regarded and treated--any hint of standards of science and ethics--is seen as reprehensible, and is responded to by personal attacks. Autism advocacy as public policy is above science and ethics, above scrutiny and criticism.

My purpose isn't to single out the Liberals. I'm using their document as just one example of what autism advocacy is and what autism advocacy does. I suggest that if the other major political parties in Canada have produced internal autism documents or backgrounders, these too would be filled with policies and positions based on similar extreme falsehoods and stereotypes. These too would display abysmal standards of science and ethics. All of Canada's major political parties are autism advocacy parties displaying and promoting popular autism advocacy standards, values, methods and goals.

If you're not an autism advocate, if you want a place in Canadian society for autistics, if you support full equality and participation and recognized standards for autistics, if you believe autistics deserve better--there's no one to vote for.


References:

Eaves, L.C., & Ho, H.H. (2004). The very early identification of autism: outcome to age 4 1/2-5. Journal of Autism and Developmental Disorders, 34, 367-378.

Howlin, P. (2005). Outcomes in autism spectrum disorders. In F.R. Volkmar, R. Paul, A. Klin & D. Cohen (Eds), Handbook of Autism and Pervasive Developmental Disorders. Hoboken, NJ: Wiley.

Leaf, R. & McEachin, J. (2008). The UCLA Young Autism Project. In R. Leaf, J. McEachin & M. Taubman (Eds.), Sense and nonsense in the behavioral treatment of autism: It has to be said. New York: DRL.

Lovaas, O.I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.

Lovaas, O.I . (2003) Teaching Individuals with Developmental Delays: Basic Intervention Techniques. Austin, TX: Pro-Ed.

Magiati, I., Charman, T., & Howlin, P. (2007). A two-year prospective follow-up study of community-based early intensive behavioural intervention and specialist nursery provision for children with autism spectrum disorders. Journal of Child Psychology and Psychiatry, 48, 803-812.

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

Sallows, G.O., & Graupner, T.D. (2005). Intensive behavioral treatment for children with autism: Four year outcome and predictors. American Journal on Mental Retardation, 110, 417-438.

Smith, T., Groen, A.D., & Wynn, J.W. (2000, 2001). Randomized trial of intensive early intervention for children with pervasive developmental disorder. American Journal on Mental Retardation, 105, 269-85. Erratum in American Journal on Mental Retardation, 105, 508. Erratum in American Journal on Mental Retardation, 106, 208.

13 comments:

David N. Andrews MEd (Distinction) said...

"The fourth party, the Green Party, has welcomed and adopted the views of their star candidate, the ex-Liberal MP Blair Wilson. Mr Wilson's public position is that the existence of autistics is a 'blight on society', a blight against which Canada must take action."

And this is a Green guy??? Even the Gree Party in this anal-retentive shit-hole called Finland is more progressive than that!!!

"And Mr Wilson's view is that only autistics who undergo ABA-based interventions starting early in life have humanity. The rest of us--most autistics in Canada--don't. We have no humanity and aren't at all human. "

Not happy about that. That is how I'm actually being treated just now by the Finnish system, though... so.. hmmm... I'm not feeling too hopeful for Canadian autistics.

"If you're not an autism advocate, if you want a place in Canadian society for autistics, if you support full equality and participation and recognized standards for autistics, if you believe autistics deserve better--there's no one to vote for."

Sadly, that is how it looks.

This is not progress, is it?

Is there absolutely no solution to this? Serious question...

Sharon said...

What a sad state of affairs.

What is going to happen say 10 years from now to those said to constitute the "minority of children who may need some level of treatment for their entire childhood"? What if they, contrary to all the expectations of those in power, still have the audacity to be autistic?
Will the government tell them, "you've been "treated" for years; act normal, 'cause we're finished with you"?

My Autism Insights said...

This is absolutely horrifying! And here (in the U.S.) I've often thought that Canada was more progressive than us. What an eye opener. Demonizing individuals for their genetics? We've seen that in history and it's never been pretty.

r.b. said...

Drain on society, no. Cash cow, yes. Who is getting most of that $300,000 a year? It certainly doesn't belong to the autistic to spend as they see fit.

Michelle Dawson said...

In response to Sharon, autistics who aren't children any more mostly only enter into public policy decisions as a frightening threat to the future prosperity and safety of Canadians.

As in, if something isn't done right now, autistic children will grow into older autistic children then into autistic adults--and we'll destroy our families, our communities, and the economy, if not the country itself.

In response to R.B., the $300,000 per year figure for all "untreated" autistics is as fictitious as the 90% rate of institutionalization.

David N. Andrews MEd (Distinction) said...

"As in, if something isn't done right now, autistic children will grow into older autistic children then into autistic adults--and we'll destroy our families, our communities, and the economy, if not the country itself."

And the thing is... I can't for the life of me see the 'logic' in their thinking. You could write anyone off using that line of thinking... it's too broad to be any real use as a 'logic'.

Besides...

I don't remember any autistics starting a world war... so the destruction issue they use is a non sequiteur.

Anonymous said...

I don't take these politicians seriously.They already have a hard time fulfilling their NT promises in health care and social programs in general ;let alone, a small subset (ie parents). Plus, politicans are the least affidable NTS.
It make sense to support ABA -parents - 2 votes. Popular Imagery of nonverbal = can't vote.
Plus, i suppose Cdn parental lobbyists are taking a cue from the American asking leaders on their expertise on something they know nothing about...Of course, they say whatever.
These American group place their generic responses next to each other.
I get what you are philosophical trying to say but as a political animal, I guess I'm too weary.
Perhaps if we as adult advocates email our MPs about obtainable services for adults - concerted efforts.You know,like jobs/zeroing in on poverty.They understand that jive. Oh, Yes....
Ex-Collegue

Anonymous said...

The day I wrote this, the final US presidential debates.
During the part defending their VP nominees...McCain mentioned Palin knows special needs children - no mention of Down's by the way and starts mentioning Autism research, treatments ..Then, Obama's turn, he mentions - if you claim zero spending, where are you going to get money for this? He also did his bit on research etc on Autism.
Autism lobbyists are greater than Down's and all special needs activists.Or else, why would they stop in sentence about their VEEPS and mention it?
Wasn't it uncanny I mentioned it on this blog the same day?I never thought autism would be mentioned during American political debates.

Anonymous said...

All I could find was this.
Even the parents are upset, being used as autism voting block..

OBAMA: "That's going to be up to the American people. I think that, obviously, she's a capable politician who has, I think, excited the — a base in the Republican Party. And I think it's very commendable the work she's done on behalf of special needs. I agree with that, John. I do want to just point out that autism, for example, or other special needs will require some additional funding, if we're going to get serious in terms of research. That is something that every family that advocates on behalf of disabled children talk about. And if we have an across-the-board spending freeze, we're not going to be able to do it."

"Sen. Obama’s website he addresses the issue of autism and talks about more than just early intervention. He speaks about the need for life-long resources and services"
http://autism.about.com/b/2008/10/15/when-autism-becomes-a-political-football-whose-interests-are-served.htm#gB3

Sorry, this author was/ is a curbie
http://www.huffingtonpost.com/janet-grillo/my-autistic-son-is-not-a_b_135421.html

Michelle Dawson said...

In case anyone hasn't seen this yet, a transcript of the last US presidential debate is here.

In a tribute to autism advocacy, all autistics are assumed to be children, possibly young children.

Joseph said...

There's a recent adult outcome study from Canada, Eaves & Ho (2008). I've only seen the abstract. Have you had a chance to review it, Michelle?

Michelle Dawson said...

Hi Joseph, that paper (abstract is here) was epublished more than a year back so I read it a while ago.

Eaves & Ho (2008) has numerous major flaws, including at the level of initial diagnosis for the sample that was followed-up.

Individuals with diagnoses of "language disorder" and "mental handicap with autistic features" and "schizoid
personality disorder" were included. Individuals with associated genetic syndromes were not excluded. CARS scores from earlier assessments (at average ages 6.8 and 11.4yrs) verge down to well below the threshold for autism. And so on.

There was no attempt to ascertain whether the followed-up adults were autistic, according to current criteria and gold standard instruments (or according to anything at all...).

The 48 individuals followed up in this study were born between 1974 and 1984; at follow-up they were on average 24 years old (range 19 to 31). None was institutionalized.

Joseph said...

None was institutionalized.

Interesting. Thanks Michelle. I guess the government estimate is a little bit off :)