Promotion first, science later, if ever. This pattern is near universal when it comes to autism interventions. In the absence of good quality research, autism interventions are loudly claimed to be effective.
For those promoting ABA-based autism interventions, claims of effectiveness unfounded in good quality research were only the first step. The real triumph has been widespread agreement that fair tests of ABA-based interventions are unethical and bad for autistics. As a result, any experimental design carrying the risk of being informative about the benefits and harms of ABA-based interventions has, for a long time now, been considered unethical.
The practice of claiming effectiveness for an autism intervention which has not been fairly tested, then using these claims of effectiveness to deem fair tests unethical, has clear benefits to service providers. And this practice has received wall-to-wall support from autism advocates, who have in turn imposed it on autistics through lobbying and litigation.
Meanwhile, this practice is not admired outside the realm of autism advocacy. Premature claims of effectiveness in themselves make fair tests of interventions more difficult--particularly, as is the case with many autism interventions, when blinding cannot be fully achieved. But those promoting ABA-based autism interventions go further and demand that autistics be entirely denied the benefit and protection of good experimental design.
In my view, this practice--its longstanding and widespread support by autism advocates, its more recent support by ASAN (example here), and its widespread imposition on autistics--continues to greatly harm autistics. Any group so denied such basic standards of science and ethics would be harmed.
Interestingly, not all autism researchers have stooped to prevailing autism advocacy standards.
Some years ago, a pilot RCT of an early autism intervention was published (Aldred et al., 2004). The intervention was manualized, of relatively low intensity, and targeted solely at the parents of preschool autistic children. Through a true experimental design, the intervention was found to have several significant positive effects, most markedly in increasing the expressive language of very young autistic children.
Successful RCTs of early autism interventions are virtually non-existent. But the researchers involved in Aldred et al. (2004) totally failed to go forth and proclaim the effectiveness of their manualized intervention. After all, they only had a small pilot RCT--the same size as the only published RCT, not a notably successful one (Smith et al., 2000, 2001), in the entire 48-year history of research into ABA-based autism interventions.
Instead of issuing premature claims of effectiveness, the authors of Aldred et al. (2004) and many other collaborating UK researchers went on to conduct a large multi-site RCT, the Preschool Autism Communication Trial. They received MRC funding for this 4-year project in 2005.
Some information about the PACT's design has been reported in a recent paper (Aldred & Green, 2009).
The trial began in early 2006 and will finish late this year. The researchers hoped to recruit 144 preschool autistic children across three sites, but exceeded their expectations and recruited 152. These children were randomized into two arms, one receiving the PACT intervention, while children in both arms continued to receive whatever other interventions their parents chose ("treatment as usual").
So far as I know, the PACT is larger than any existing published RCT in the history of autism research. The PACT's design means that it carries a good risk of being informative about the effectiveness of the studied intervention. There is no good reason for the PACT to be unprecedented, but it is.
In one of the PACT's recent newsletters, the PACT's Chief Investigator, Jonathan Green, notes that there has been a lot of interest in the PACT manual and in "training opportunities" with respect to this intervention. Dr Green responds:
Until we have the results of the trial we are not able to disseminate the intervention manual or to undertake any training; but be assured that after the results are in (and depending of course on the outcome in terms of effectiveness!) we do have potential plans in place for such dissemination.In other words, and keeping in mind there is a successful published pilot RCT, there are no plans to disseminate information about the intervention--not until there is good quality evidence as to its effectiveness. This is the recognized scientific standard in non-autism areas.
Aldred et al. (2004) and the PACT shouldn't in any way be above scrutiny or criticism. For example, I can see problems in how Aldred et al. (2004) was designed (I mention one of them here), which may or may not be carried over to the PACT. But the pilot RCT and the resulting PACT generally demonstrate the only science- and ethics-based sequence when it comes to interventions and treatments: good quality research first, then think about spreading the word.
References:
Aldred, C.R., & Green, J. (2009). Early social communication
interventions for autism British Journal of Hospital Medicine, 70 (3), 143-145
Aldred, C., Green, J., & Adams, C. (2004). A new social communication intervention for children with autism: pilot randomised controlled treatment study suggesting effectiveness Journal of Child Psychology and Psychiatry, 45 (8), 1420-1430 DOI: 10.1111/j.1469-7610.2004.00338.x
Smith, T., Groen, A.D., and 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.
Addendum: This post is included in the 116th Meeting of the Skeptics' Circle hosted by Beyond the Short Coat.
73 comments:
I see your point about studies, but I'm a little confused, and have been for a while. I've read through your posts, and I still don't understand, so I'm asking for clarification. Because I want to understand.
How is ASAN supporting ABA-treatment or denying autistics with basic standards of science and ethics? I thought they are a civil rights group opposed to ABA and harmful treatments.
In ASAN's public statements and positions, ASAN has many times promoted, recommended, and demanded PBS-based interventions for some or all autistics.
Examples are here, here, here, here, and here.
PBS (Positive Behavior Support) is a form of ABA-based intervention. In the area of autism, PBS-based interventions are not supported by good quality research.
Here is PBS within the Association for Behavior Analysis International. Here is a blurb about one of the major figures in PBS (and editor of the flagship PBS journal).
If, as you say, ABA is being promoted despite no good evidence of efficacy, why is this?
Is it because the promoters stand to make money out of ABA or is it because they really believe it works?
Sorry, re-posting my comment due to my incompetent html...
In response to the Neuroskeptic, even though this is an area that I go on about (here's an example from earlier this year), I never presume to know motives. And in fact I have no idea. It's mystery to me.
Things would be vastly better for autistics now, if different kinds of decisions had been made.
There could, and should, be 10 or more trials like the PACT reported in the literature by now. Then we would have a much better idea of how to help (and how not to harm) autistics.
I read the PACT's website and it's great they did this RCT! So badly needed in autism intervention as you pointed out. PACT sounds a bit like Floortime - a developmental approach that's been around awhile. What are your thoughts about Floortime?
In response to Joanne C., DIR/Floortime is an excellent example of a brand-name autism intervention that has, for a long time, been heavily promoted and marketed as effective. And this is in the total absence of published good quality research supporting its effectiveness. This is extremely bad practice--bad science and bad ethics.
There is now, finally, an attempt to test DIR/Floortime in an ongoing RCT. But it is a poorly designed RCT, particularly considering the biases those promoting DIR/Floortime have created through their heavy marketing of its effectiveness. There was a poster related to this trial at IMFAR 2009 and its author did not even report the trial's design. I think that speaks volumes.
Three major problems with your post:
Number one: "carrying the risk of being informative about the benefits and harms of ABA-based interventions".
It is not the "risk of being informative" that's unethical, it is the risk that the children in the control group would stay untreated. If you had a sick child you wouldn't like him to stay in the control group, especially if the intervention is so long.
Number two: "claiming effectiveness for an autism intervention which has not been fairly tested". Saying that ABA is not "fairly tested" is preposterous.
Over 2500 studies (per Mark L. Sundberg saying, check his workshop Verbal Behavior in Australia) prove that ABA is effective. I'd say that 2500 studies carry some weight.
Number three: "In my view, this practice--its longstanding and widespread support by autism advocates, its more recent support by ASAN (example here), and its widespread imposition on autistics--continues to GREATLY HARM autistics. Any group so denied such basic standards of science and ethics would be HARMED." (emphasis mine)
Here you really transform the double-blind criterion, quite unapplicable to ABA, into some sort of a fetish. What doesn't match your criteria becomes not only ineffective, but even harmful.
As a good scientist, you'd have to scientifically PROVE (by double-blind studies, in order to match your rigor) that ABA is harmful before making such statements.
In response to Mr Filip:
1. I disagree that good quality research is unethical. For situations where good experimental design is unecessary, see Glasziou et al. (2007). ABA-based autism interventions don't meet the criteria.
2. Which of those "over 2500 studies" (oddly, Richard Foxx claims it is 1500, and in 2007, ABAI claimed it was 550, though a decade ago the MADSEC report claimed it was "several thousand") would you recommend, as the kind of research you support?
In non-autism, non-ABA areas, quantity is not considered a good substitute for quality. "Over 2500 studies" (let's say they exist) and only one small-N RCT with largely poor results, in 48 years of research? As I've written elsewhere, and often, autistics deserve better.
With respect to Verbal Behavior (highly marketed form of ABA-based intervention), there is no RCT and only one very small (N=5 for the VB group) poor quality nonrandomized controlled trial (Reed et al., 2007). The data, for what it's worth, do not favour the intervention Dr Sundberg has long been promoting and marketing. Two children in the ABA group in Magiati et al. (2007) received VB services, but in this study, conducted by researchers with no relevant conflicts of interest, the ABA group had no better outcomes than their controls.
3. There is no mention of "double-blind" in my original post. The harm I refer to results from autistics being denied very basic standards of science and ethics, including being denied the benefit and protection of good experimental design. Those standards, including the need for good experimental design, exist because without them, people were harmed.
"The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4"
American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders
Michelle Dawson wants us to believe that the AAP, the NYSDOH, the US Surgeon General, the hundreds of professional members of the Association for Science in Autism Treatment, the professionals of the MADSEC Autism Task Force, and the professionals at the May Institute, the Lovaas Institutes, the Center for Autism and Related Disabilities who actually work with and treat autistic children don't apply proper science?
Michelle Dawson's position lacks any credibility.
Thanks, it's interesting to see that finally trials are being done on any form of autism intervention/treatment or just "going through the wall" as I called teaching my youngest that pictures, signs and words of an object were all the same.
Having been there, done that with ABA until they were asked to leave after 8mths... I no longer trust any "so called" autism treatments or therapies. The ABA crowd likes to claim I just had poor therapists... mine came from the local children's hospital not a private company paid for by the Ontario gov't... I had the 'real deal' not the watered down version and IMO it was cruel, unnecessary and inflexible.
We use speech (language comprehension help), OT (sensory help), token system/social stories (navigating the classroom rules and playground survival help), 20min/day of Math and reading (home) extra help by Mom. Good parenting - learning to wait our turn in line, going to the restaurant, going the beach - having fun.
Minimal minutes in a day.... and all of it fun and easy.
I'll never go back to "autism training" no matter what any research says about any programs.
S.
farmwifetwo,
Michelle Dawson doesn't accept "anecdotal" evidence so I am curious if she will endorse your story even though it is purely anecdotal and not based on any scientific evidence.
In response to Anonymous, the May Institute, the Lovaas Institute, and CARD are all ABA service providers. CARD's leader is a BCBA who promotes DAN!-level standards of science and ethics for autistics. See more about CARD's standards here. ASAT's purpose is to promote ABA-based autism interventions.
The Surgeon General, MADSEC and NYSDOH reports (all promoted by ASAT) are all a decade old and none cites even a single RCT of ABA-based autism interventions. That in itself is remarkable.
The sole prospective nonrandomized controlled trial (with an N of 10 or more) cited in these reports is Lovaas (1987), which is dependent for its results on the use of aversive procedures (systematically hitting preschool children--as young as 19 months--"hard," see Leaf & McEachin, 2008). That too is remarkable, in its way.
The MADSEC report further cites as "best practices" a large-N (by ABA standards) single subject design, Hagopian et al. (1998), in which basket holds are used as aversive procedures. As the US GAO has documented, basket holds risk being fatal. Again, it is remarkable that anyone would see autistics as deserving of these kinds of standards.
I've written about Myers et al. (2007; the AAP report) here. To repeat myself re those two sentences about ABA-based autism interventions:
"...there is a failure to report accurately from primary sources, there is the inclusion of a large number of papers dependent on the use of aversive procedures, and there is no consideration of the quality of the research (even the basic research design of some of the papers is inaccurately reported). This is just to bring up three very basic standards of science and ethics."
I agree with Anonymous that autism advocates regard recognized standards of science and ethics, even very basic standards, as totally non-credible, if not reprehensible, and something to oppose when it comes to applying them to autistics. As Anonymous demonstrates, autism advocates have successfully (as I wrote) imposed their views in this respect on autistics, including through lobbying and litigation.
But unlike Anonymous, I don't see very well-established (for the nonautistic population) and very basic standards of science and ethics, such as the use of good experimental design and refraining from making false or exaggerated claimes, as being non-credible.
In fact Anonymous has helpfully demonstrated what autism advocacy is all about: absolute opposition to even the most basic standards of science and ethics being applied to autistics.
Forgot to ask, is Anonymous saying that public policy about autism should be based on (some) anecdotes from parents of autistic children? I can't tell.
"But unlike Anonymous, I don't see very well-established (for the nonautistic population) and very basic standards of science and ethics, such as the use of good experimental design and refraining from making false or exaggerated claimes, as being non-credible.
In fact Anonymous has helpfully demonstrated what autism advocacy is all about: absolute opposition to even the most basic standards of science and ethics being applied to autistics."
"In response to Joanne C., DIR/Floortime is an excellent example of a brand-name autism intervention that has, for a long time, been heavily promoted and marketed as effective. And this is in the total absence of published good quality research supporting its effectiveness. This is extremely bad practice--bad science and bad ethics."
It sounds to me like someone needs to start a blog and research about the ineffectiveness and poor ethical and scientific standards of floortime therapy and all other autism therapies since none of these therapies has any proof of effectiveness nor holds to any standard of science and ethics, according to Michelle.
Yet, Michelle Dawson will promote floortime therapy over ABA even though ABA has decades of research and has the belief that very credible agencies have no standard of science and ethics.
"In fact Anonymous has helpfully demonstrated what autism advocacy is all about: absolute opposition to even the most basic standards of science and ethics being applied to autistics."
Michelle has helpfully demonstrated her position: that no autism therapy has a standard of science and ethics. Autistic children need intensive treatment now and cannot wait for the "perfect" treatment.
And yet she promotes all autism treatment more than ABA despite,
"The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4"
How can Michelle Dawson support floortime more than ABA even though, according to her, neither treatment has any proof of effectiveness or has any "standard" of science and ethics?
So, according to Michelle, since no autism treatment is up to her standards of science and ethics than no autism treatment should be used.
I truly do not understand Michelle Dawson's position.
I wonder how many times those sentences from Myers et al. (2007) will be scanned in. Anonymous, have you read the papers cited in those sentences?
For what I wrote about DIR/Floortime, see my comment above. Anonymous's awesomely false conclusion that I support and promote DIR/Floortime is just another of those remarkable autism advocacy things.
Unlike Anonymous, I don't see very basic and well-established standards of science, like good experimental design, as harmful to autistics or as ridiculous or bizarre.
Also, I don't see what is so difficult, and so reprehensible, about refraining from making false and exaggerated claims about the effectiveness of autism interventions.
So far as I can tell, Anonymous' position is that false and exaggerated claims about intervention effectiveness help autistics and must not be questioned in any way. I disagree.
Also, because I question false and exaggerated claims, and because I think autistics deserve basic standards of science (like good experimental design), Anonymous is certain that I support all interventions except for ABA-based interventions, and that I oppose all approaches to autism.
Wow. That is remarkable.
"Also, because I question false and exaggerated claims, and because I think autistics deserve basic standards of science (like good experimental design), Anonymous is certain that I support all interventions except for ABA-based interventions, and that I oppose all approaches to autism."
No autism treatment has any proof of effectiveness or "standard" of science and ethics. Yet I know that if given the choice you would advocate for floortime over ABA (and have in the past).
How can you advocate for floortime over ABA even though, according to you, neither has any proof of effectiveness or any standard of science and ethics?
No one sees good experimental design as ridiculous or bizarre. What one finds bizarre is how Ms. Dawson cannot support ABA but can support other therapies even though no autism therapy has any proof of effectiveness nor any standard of science or ethics.
Since no autism treatment has any proof of effectiveness or any standard of science and ethics how can you support any treatment yet not support ABA even though it is no different from any other treatment?
Because I write this about DIR/Floortime, Anonymous falsely claims, absurdly and again, that I am a DIR/Flootime promoter (an earlier comment here). This is beyond remarkable and right into stupefying.
Anonymous' remarkable behaviour reminds me of the persistent totally remarkable autism advocacy false claim that I deny autism is a disability, when the public record is overwhelmingly in the opposite direction.
Here are the two positions I take in the original post:
1. Claiming an intervention is effective in the absence of good quality research demonstrating this effectiveness is not good practice.
2. Autistics should not be denied the benefit and protection of recognized standards of science and ethics.
Which part of this is Anonymous opposing? Which part does Anonymous see as bizarre or inexplicable?
I did not base it on that single comment. You DO promote other therapies over ABA, whether it is play therapy, floortime or anything else even though no treatment for autism has been proven effective and has no standard of science or ethics.
Think of "floortime" as every other autism therapy aside from ABA. Does that make it easier for you to understand? I was making a general statement, not about floortime in particular.
"Anonymous' remarkable behaviour reminds me of the persistent totally remarkable autism advocacy false claim that I deny autism is a disability, when the public record is overwhelmingly in the opposite direction."
Mr. Ne'eman doesn't think autism is a disability. Do you support him?
"We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not disability and someday, I hope, the world will recognize that those who think in different ways should be welcomed."
"Difference is Not a Disease"
I guess I have to repeat myself since Ms. Dawson is not answering my questions,
"How can you advocate for floortime [all other autism therapies] over ABA even though, according to you, neither has any proof of effectiveness or any standard of science and ethics?
No one sees good experimental design as ridiculous or bizarre. What one finds bizarre is how Ms. Dawson cannot support ABA but can support other therapies even though no autism therapy has any proof of effectiveness nor any standard of science or ethics.
Since no autism treatment has any proof of effectiveness or any standard of science and ethics how can you support any treatment yet not support ABA even though it is no different from any other treatment?"
To make it simpler for you, how can you NOT support ABA but support the other autism treatments you do support?
Now Anonymous claims that DIR/Floortime, a trademarked brand-name intervention, is the same as all approaches to autism except ABA-based interventions. This is getting even more remarkable, and of course I disagree.
Also, because I clearly don't promote DIR/Floortime, regardless of the tedious, false and absurb repeated claims by Anonymous, the question Anonymous has repeatedly asked is meaningless.
I am not going to accept that DIR/Floortime is the same as all non-ABA autism interventions, sorry.
Also, Anonymous has not provided sources for where I've promoted all these other DIR/Floortime-interchangeable interventions.
I have written about studies of various quality in non-ABA areas (see the original post here for one example). I have no idea if this is what Anonymous means. Is Anonymous saying that if I write anything about a non-ABA-based autism intervention (as I did with DIR/Floortime) then this must mean I am a promoter of that intervention?
By the way, treatment and intervention research is not about "proof," but about evidence and particularly about quality of evidence. There are many well-established and evolving standards as to how to judge the quality of evidence supporting any given intervention at any given time.
ASAN, and Ari Ne'eman, have always taken the position that autism is a disability. ASAN is part of the cross-disability rights movement (I hope I've stated that properly). Anonymous is free to claim the exact opposite, which somehow doesn't surprise me, but this only serves to show the standards Anonymous applies to autistics.
"We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not disability and someday, I hope, the world will recognize that those who think in different ways should be welcomed."
"Difference is Not a Disease"
You can't argue that Mr. Ne'eman wrote that. You can't argue that many ND supporters have written that "neurological diversity" is not a disability. Whether or not the NDs who wrote it still support this view, I don't know, but you can't change what has been written.
Ms. Dawson is still continuing to avoid answering my questions.
I didn't intend for my writing to say that you promoted floortime but you have decided to interpret that way, I suspect because you cannot answer my questions. I'm sorry you don't understand what I am asking you and that you cannot answer my questions.
When asked what alternatives to ABA should be used, as ABA is not deemed to be "medically necessary" in Canada, what do you recommend?
How can you "recommend" these treatments over ABA since no autism treatment has proven to be effective and none have any standard of science and ethics? Why can you not recommend ABA since it is no different from any other autism therapy?
"I am not going to accept that DIR/Floortime is the same as all non-ABA autism interventions, sorry."
What makes this one special? Has it been proven to be effective? Is it up to your standards of science and ethics?
I'll repeat myself,
"How can you advocate other autism therapies over ABA even though, according to you, none have any proof of effectiveness or any standard of science and ethics?
No one sees good experimental design as ridiculous or bizarre. What one finds bizarre is how Ms. Dawson cannot support ABA but can support other therapies even though no autism therapy has any proof of effectiveness nor any standard of science or ethics.
Since no autism treatment has any proof of effectiveness or any standard of science and ethics how can you support any treatment yet not support ABA even though it is no different from any other treatment?"
To make it simpler for you, how can you NOT support ABA but support the other autism treatments you do support?"
Anonymous wrote: "Michelle Dawson will promote floortime therapy."
Not long after, Anonymous wrote: "I didn't intend for my writing to say that you promoted floortime"
This is way too remarkable for me.
Still waiting for Anonymous to provide all the autism treatments and so on that I have promoted. I strongly suggest that Anonymous not keep repeating the same question without providing a factual basis for it.
Mr Ne'eman on autism and disability. Here too. Here too.
I have not written that I generally support ASAN, Mr Ne'eman, or "ND" (whatever that means).
I can also "cherry-pick" to prove that many who support "Neurodiversity" do not believe that "neurological diversity" is a disability.
Why can you not answer my questions?
I never intended for my general statement of "floortime" therapy to be taken literally. But, since you supposedly have autism I should've thought about that first.
"When asked what alternatives to ABA should be used, as ABA is not deemed to be "medically necessary" in Canada, what do you recommend?
How can you "recommend" these treatments over ABA since no autism treatment has proven to be effective and none have any standard of science and ethics? Why can you not recommend ABA since it is no different from any other autism therapy?"
So, what alternatives to ABA do you recommend? Can you not answer this?
And why, if you do, do you support these treatments over ABA even though, as you say, no autism treatment has been proven to be effective or has any standard of science and ethics? Since these treatments also do not than why can you also not support ABA along with the others you "recommend."
Have you never been asked, "Aside from ABA, what treatments for autism do you recommend?" I'm sure you have, Michelle. And what other treatments do you recommend?
I'm not going to quit asking until you answer my questions. But I don't think you can because even you can see how illogical your position is.
Neurodiversity is part of the general idea that disabled people should have human rights. It looks like Anonymous sees this as bad for autistics.
Anonymous repeatedly demands that I answer this question: "How can you "recommend" these treatments over ABA...?"
What are "these treatments"? Please name them and provide sources. Thanks in advance.
No, I'm asking you right now, what other treatments, aside from ABA, do you recommend? Since you don't support ABA and it is not "medically necessary" in Canada what other treatments do you recommend? I'm asking for your opinion, right now.
You've been asked this before, Michelle. Don't play stupid. How do you know I have never asked this question before? You don't even know who I am, do you? So you don't know if I have never asked you this questions before.
Everyone agrees that disabled people should have human rights, Michelle. But some take it much, much further than that.
Here are some quotes from Anonymous, I've added a bit of bold-facing:
"Michelle Dawson will promote floortime therapy over ABA"
"yet she promotes all autism treatment more than ABA"
"How can Michelle Dawson support floortime more than ABA"
"Yet I know that if given the choice you would advocate for floortime over ABA (and have in the past)"
"How can you advocate for floortime over ABA"
"Ms. Dawson cannot support ABA but can support other therapies"
"how can you support any treatment yet not support ABA even though it is no different from any other treatment"
"You DO promote other therapies over ABA, whether it is play therapy, floortime or anything else"
"How can you advocate for floortime [all other autism therapies] over ABA" [partly repeated]
"Ms. Dawson cannot support ABA but can support other therapies" [repeated]
"how can you support any treatment yet not support ABA even though it is no different from any other treatment" [repeated]
"how can you NOT support ABA but support the other autism treatments you do support"
"How can you "recommend" these treatments over ABA"
Setting aside all the false claims made by Anonymous, I am asking the question, what are these treatments that I have recommended, advocated for and promoted?
Many of the major human rights laws in Canada have been used to write off and deny the humanity of autistics who have not received ABA-based interventions starting early in life. That would be most autistics in Canada, whose human rights have been denied. This has been fully supported by autism advocates and political leaders.
My Auton intervention was about those written-off and dehumanized autistics. I argued that we are human and should have human rights. This was overwhelmingly opposed by autism advocates in Canada, and continues to be.
I forgot to ask Anonymous for sources, please, as to all the treatments I've recommended.
I have put some recommendations on the record. I've even called an intervention effective (that's right here, on my blog).
But I have no way of knowing what Anonymous is referring to unless Anonymous provides something factual to back up Anonymous' enormous number of statements about all the treatments Anonymous claims I have promoted, recommended and advocated for.
Michelle Dawson refuses to answer my simple question I am asking her RIGHT now.
Again, I have to repeat myself,
"No, I'm asking you right now, what other treatments, aside from ABA, do you recommend? Since you don't support ABA and it is not "medically necessary" in Canada what other treatments do you recommend? I'm asking for your opinion, right now.
You've been asked this before, Michelle. Don't play stupid. How do you know I have never asked this question before? You don't even know who I am, do you? So you don't know if I have never asked you this questions before.
Everyone agrees that disabled people should have human rights, Michelle. But some take it much, much further than that."
Why can she not answer a simple questions?
"I have put some recommendations on the record. I've even called an intervention effective (that's right here, on my blog)."
Than please direct me to these sources.
Anonymous has repeatedly claimed that I have promoted, recommended and advocated for some and/or all non-ABA-based autism treatments.
My simple question is, what are these treatments, and where have I recommended them?
I wrote out my positions, which are also recommendations, here, among other places.
This includes a recommendation for those who want to make demands for autism services--whatever those services may be (and there you have it).
The same post explains, again, why demands for ABA-based interventions have had consequences for all autistics in Canada, and also what my position has been with respect to these demands.
The effective intervention I wrote about is in the pile here. I suggest reading the paper.
There are areas of autism research that do have good quality research. And the results have largely been that interventions which are shown to be effective in poor quality studies are not found to be effective when subject to good experimental design. Often there are strong placebo effects. I do not think this evidence should be ignored.
An effective intervention: Tyrer et al. (2008)
I read the study and it doesn't say much to me.
"This was a multi-site RCT of three different interventions targeting "aggressive challenging behaviour" in intellectually disabled adults, a minority of whom were autistic."
Only a minority of those in this study were autistic so how can you claim that this is an "effective intervention" for people with autism as it is listed on the page "An assortment of 2008 autism papers."
So, you support this one study more than ABA?
I've read the letter and I know your position.
Do you support the effectiveness of this study:
http://psych.wisc.edu/lang/pdf/gernsbacher_reciprocity.pdf
And again, why you are refusing to answer my question?
"No, I'm asking you right now, what other treatments, aside from ABA, do you recommend? Since you don't support ABA and it is not "medically necessary" in Canada what other treatments do you recommend? I'm asking for your opinion, right now."
"This includes a recommendation for those who want to make demands for autism services--whatever those services may be (and there you have it)."
And you do realize, Ms. Dawson, that there are autistic children in Canada receiving no autism treatment because of the Auton decision. Is no treatment better than ABA?
"Behaviour-based programs focus on helping a person to learn and develop by treating the specific symptoms of ASDs, including communication disabilities, and self -stimulatory and self-destructive behaviour. Applied Behavioural Analysis (ABA) is a well-researched, intensive treatment which has been shown to result in great improvement for many people with ASD symptoms.
However, in Canada currently, there are no national treatment standards. As a result, those provinces which have implemented their own unique intervention programs may include all or only some aspects of ABA. Often these programs are given a title selected by the home province that is representative of their program, such as Intensive Behavioural Intervention (IBI) or Early Intensive Behavioural Intervention (EIBI).
This lack of a national standard of treatment for individuals with ASD means that treatment is not universally accessible or uniform across the country. ASC recognizes the pressing need of individuals of all ages with an ASD to have universal access to scientifically validated treatments."
http://www.autismsocietycanada.ca/approaches_to_treatment/behaviour_treatment/index_e.html
So, again, is no treatment better than ABA?
Sorry, but my those are my positions. The question has been answered, and in fact I have answered it repeatedly.
I described Tyrer et al. (2008) as reporting an effective intervention. This is accurate.
Gernsbacher (2006) is not a study. It is a narrative literature review.
The crucial question is, why didn't the Auton parents, and then all those who have come after, make their demands for ABA services (or whatever else they may want) accurately, ethically, and respectfully? They always had that option.
But regardless, in Canada, virtually all funding for autism services goes into ABA-based autism interventions, mostly for preschool children. There is almost no funding for anything else.
"I described Tyrer et al. (2008) as reporting an effective intervention. This is accurate."
I asked you for effective autism interventions and this study does not reflect an effective autism intervention so I am not sure why you referred me to it.
"Gernsbacher (2006) is not a study. It is a narrative literature review."
I asked for alternatives to ABA treatment and this paper was recommended and even cited as being "useful" (not by you). Do you recommend people read this paper when asking for alternatives about ABA alternatives?
"The crucial question is, why didn't the Auton parents, and then all those who have come after, make their demands for ABA services (or whatever else they may want) accurately, ethically, and respectfully? They always had that option."
"Children and adults with debilitating autism conditions cannot wait for research to provide every answer about the causes of autism and to provide absolutely perfect treatment options. That is a bit like suggesting that no treatments for heart disease should be offered until there is complete agreement about every possible cause of heart disease. That kind of thinking is not acceptable to most people.
There is certainly enough widely accepted peer-reviewed research about effective methods of assisting a person with ASD to experience significant improvement in many areas of development. ASC feels that refusing to exercise that knowledge through effective treatment provision is irresponsible from a moral and financial perspective. Courts across the country have also been supporting this perspective."
"The premise of most of the legal actions in Canada is that it is discriminatory not to provide scientifically validated effective treatment to certain groups of people (people with Autism Spectrum Disorders, people with ASD over the age of six and of any age). Treatment is costly, and few families have the personal financial resources to provide ABA. The outcomes of legal actions and appeals to date have been overwhelmingly in support of the assertion that people with autism should be afforded the opportunity to receive scientifically validated effective treatment in a non-discriminatory manner.
Legal actions have sometimes been the only means to motivate a provincial government to provide effective treatment to children with ASDs, but they are expensive and often take years. Few families can afford to initiate and maintain legal actions, and few families can cope with the additional duress of legal action on top of their already exceedingly high stress levels."
http://www.autismsocietycanada.ca/approaches_to_treatment/right_to_treatment/index_e.html
"But regardless, in Canada, virtually all funding for autism services goes into ABA-based autism interventions, mostly for preschool children. There is almost no funding for anything else."
But since, as you state, no autism treatment has proven to be effective and have no standards of science and ethics does it truly matter what treatment they receive as long as they receive something? So why, since all treatments are the same, since none have been proven to be effective and have no standards of science and ethics, is ABA not deemed to be "medically necessary" so that those who are currently receiving no autism treatment can?
Is no treatment better than ABA?
Autism Society Canada has always had the option of making their demands for services accurately, ethically and respectfully. But they have always chosen not to.
The view that "all treatments are the same" belongs to Anonymous, not me.
For the rest, see the above comments and read the original post. Everything has been responded to many times over.
But it's worth repeating, one last time, the two main points in the original post:
1. Claiming an intervention is effective in the absence of good quality research demonstrating this effectiveness is not good practice.
2. Autistics should not be denied the benefit and protection of recognized standards of science and ethics.
This is what is being opposed, at great length. That is remarkable.
Since you refuse to answer my other questions than try to answer this question,
"Is no treatment better than ABA?"
You state that no autism treatment has been proven to be effective and that no treatment has any standards for science or ethics. So, according to this philosophy, it doesn't matter what treatment an autistic child receives since it doesn't really work, does it? Does that not then make them, according to this philosophy, "all the same" since none of them, according to research, are actually effective?
"This is what is being opposed, at great length. That is remarkable."
This is what is being opposed and it is remarkable:
"Children and adults with debilitating autism conditions cannot wait for research to provide every answer about the causes of autism and to provide absolutely perfect treatment options. That is a bit like suggesting that no treatments for heart disease should be offered until there is complete agreement about every possible cause of heart disease. That kind of thinking is not acceptable to most people.
There is certainly enough widely accepted peer-reviewed research about effective methods of assisting a person with ASD to experience significant improvement in many areas of development. ASC feels that refusing to exercise that knowledge through effective treatment provision is irresponsible from a moral and financial perspective. Courts across the country have also been supporting this perspective."
http://www.autismsocietycanada.ca/approaches_to_treatment/right_to_treatment/index_e.html
"Autism Society Canada has always had the option of making their demands for services accurately, ethically and respectfully. But they have always chosen not to."
"The premise of most of the legal actions in Canada is that it is discriminatory not to provide scientifically validated effective treatment to certain groups of people (people with Autism Spectrum Disorders, people with ASD over the age of six and of any age). Treatment is costly, and few families have the personal financial resources to provide ABA. The outcomes of legal actions and appeals to date have been overwhelmingly in support of the assertion that people with autism should be afforded the opportunity to receive scientifically validated effective treatment in a non-discriminatory manner.
Legal actions have sometimes been the only means to motivate a provincial government to provide effective treatment to children with ASDs, but they are expensive and often take years. Few families can afford to initiate and maintain legal actions, and few families can cope with the additional duress of legal action on top of their already exceedingly high stress levels."
http://www.autismsocietycanada.ca/approaches_to_treatment/right_to_treatment/index_e.html
I'm curious why Stephanie is posting anonymously....
Because it would take awhile for anyone to figure it out. Otherwise, no one would bother, would they, Jypsy? You have already given up attempting to argue with me, haven't you?
I'm just trying to figure out how you people think and the logic behind your decisions because they don't make sense and because they harm autistic people, especially children.
"Any area of science in which researchers engage in a search for publishable "positive results" is vulnerable to the dangers of publication bias, data cherry-picking, and so forth. Even obscure topics are vulnerable but when researchers are falling over themselves to jump on the latest scientific bandwagon, the problems multiply exponentially."
Neuroskeptic
This is why I love "Neurodiversity" and "autistic intelligence." There is no proof that anything that you tout is true (and I have proven that it is not). Yet you still continue to engage in this nonsense.
In general response to Ms Keil and/or Anonymous, who are "you people?"
Ms Keil has only posted once before on this blog under her name, that I can remember (if I'm wrong, please correct me). There is a lot of evidence that I responded. You can find this in the comments here, where Ms Keil provided false information about the DSM-IV, which I corrected. Now Ms Keil and/or Anonymous are claiming that providing accurate, verifiable information about the DSM-IV is wrong, harmful to autistics and/or "nonsense."
Re the excellent quote from the Neurosekptic, I completely agree that publication bias should be a major concern in the ABA literature. That is an excellent point and something I've presented about.
Then there is selective reporting of data. For example, in Howard et al. (2005), autistic children who did so poorly in ABA-based interventions that they could not continue were simply dropped from the analysis.
Also it has been acknowledged that unintended effects of ABA-based interventions have been ignored, regardless of the huge size of the literature:
"No intervention is likely to be side effect free, yet this topic has largely been ignored in the intervention literature on children with ASD." (Matson, 2007).
The possible problem of failure to publish "negative" results in basic research where the goal is to find deficits ("negative results" mean that autistics fail to show a deficit) has also largely been ignored.
I disagree with Ms Keil and/or Anonymous that good experimental design, and refraining from making false or exaggerated claims (and imposing these through public policy and the law), are wrong, harmful to autistics of any age and/or "nonsense." I also disagree that human rights are wrong, harmful to autistics, and/or "nonsense." Ms Keil and/or Anonymous's view would set autistics totally apart from all other human beings, as not deserving of human rights or even the most basic standards that automatically protect and benefit nonautistics.
I also disagree with Ms Keil and/or Anonymous that testing ideas through peer review is wrong, harmful to autistics and/or "nonsense."
As I wrote above, at least in the areas I'm concerned with, science isn't about "proof," though I'm very interested in where Ms Keil and/or Anonymous has (have? this is confusing...) "proven" that everything in the original blog post (and in my comments? and in everything else I've said and done...?) is false, harmful to autistics, and/or "nonsense."
I disagree with Ms Keil and/or Anonymous that intelligence in autistics doesn't exist, but if she/he/they (?) has/have some data (or know/s of existing work) to support his/her/their view in this respect, then I would be very interested.
And I disagree, again, that the general idea that disabled people should have human rights (of which neurodiversity is part) is wrong, harmful to autistics, and "nonsense."
I did not have any choice but to engage in issues of human rights. Ms Keil and/or Anonymous are (is?) telling me that I should never, ever have argued or even stated that autistics are human beings with human rights. I disagree with one/the other/both of them.
What I've found most striking about a lot of the comments here, setting aside all the other striking things, is the total lack of interest in good quality autism intervention research. This lack of interest speaks volumes about the current era of autism advocacy.
Because I want it handy, I'm going to scan in a comment Anonymous posted on Neuroskeptic's blog:
Today's "hot topic" is autism. I see many, many "positive" papers about autism nowadays, so I am obviously suspicious. I particularity find topics such as "autistic intelligence" and "Neurodiversity" to be amusing.
"Neurodiversity" is incredibly popular and I am afraid that it is inaccurate in its philosophy.
That comment is here.
I want to keep my response handy too. It's here:
Responding to Anonymous, there is relatively little published research about intelligence in autism. Major issues like, say, neural efficiency have barely been mentioned. There are only two inspection time papers (from the same group). There is the same problem with learning in autism.
Hans Asperger referred to "autistic intelligence" in 1944, and Leo Kanner noted areas in which autistics performed particularly well in 1943 (then there was Scheerer et al., 1945), But in the ensuing decades there has been very little systematic investigation into what autistics do well.
This is in contrast to the vast bulk of research seeking to investigate ways in which autistics are inferior, defective, dysfunctional, etc.
Neurodiversity is part of the general idea that disabled people should have human rights. While areas that could be considered related to this, like stigma and stereotype threat, are recognized as important and are well-studied in non-autism areas, they have not been studied at all in autism.
I really do not know how to respond but I think you have lost it.
You are not for Autistic rights, you are for Michelle Dawson's particular perseveration regarding ABA, I see no evidence to the contrary NEVER!!!
You are letting this blind you to anything else.
I am called all manner of things for daring to contradict St Michelle, because of your record in challenging the law in Canada.
However you are only a one ring Circus so far as that goes and I think you are actually prejudicing our advancement in the long run.
Yes I disagree with Ari too, (but that is just par for the course with me, I have not dismissed him into the wilderness yet)
You are too negative, too misunderstanding of what will achieve advantage and rights to us.
Not only that your so called science is flawed, (but I have said that before)
In response to Mr Rex, I'm still waiting, patiently and eagerly, for your first ever genuine, factual criticism of something I've written or done.
And I am still waiting for an honest apologia of why you do not comment on the wider issues of autistic rights, outside of your own blinkering obsession about ABA to the extent that denounce people who are our allies, I have had enough of that.
I am not criticising your basic analysis of ABA but your attitude to everything else is hardly rational.
As I wrote above, still waiting, patiently and eagerly, for Mr Rex's first ever genuine, factual criticism of something I've (actually) written or done.
How tantalizing to not know the details of what they are teaching the teachers and what the teachers are teaching the children. Let's hope they don't keep us in suspense for too long.....although if you're right it will be worth the wait to have something concrete to consider implementing.
Cheers
Methinks Mr. Rex has done something or other he considers "good", and has become FULL OF HIMSELF again.
"A nail, a nail, my kingdom for a nail!" and I'll burst his balloon.
I'm surprised that ABA-treatment has so little scientific support behind it. In response to the question of motives, I recently spoke with an treatment provider for an article I was working on (publication status is undetermined) and found her very genuine. She genuinely believed in her approach and she genuinely believed in improving quality of life. She didn't push it as a means of making autistic children not autistic (which I've heard from other ABA-advocates), but as a way of helping them better cope with society's way of doing things.
Further, she's been instrumental in making it so that institutionalization is no longer a legal recourse for children with autism in our state -- which very much pleased me.
I'm not saying you're wrong, but I do find it a bit surprising. She seemed confident that the results of the studies she'd done which got her started in offering the ABA services here were sound.
In response to Stephanie, my suggestion is that if you know of good quality research in the area of ABA-based autism interventions, then please provide sources (references, links, anything...).
I don't find it surprising when autism service providers are very enthusiastic about the services they provide, no matter what those services are (the UCLA model, VB, PRT, PBS, RDI, DIR, DAN!, Denver Model, Son-Rise, etc...).
In non-autism, non-ABA areas, the widely recognized way to determine whether intervention studies have "sound" results (meaning, that they are informative about the benefits and harms of the tested intervention) is to look at the quality of the research.
If you check with respect to intensive ABA-based autism interventions, you will find only one true experimental design (where the intended comparison between groups was actually carried out). That's in 48 years of published research into ABA-based autism interventions.
And this was a small-N (a total of 7 autistic children in the experimental group, along with 8 PDD-NOS children) RCT with largely poor results, particularly for the children with the specific diagnosis of autism (Smith et al., 2000, 2001--don't forget to read the authors' errata).
In Canada, ABA-based autism interventions have been demanded by autism advocates (including behaviour analysts) by insisting that autistics who have not received these interventions starting early in life (most autistics in Canada) are write-offs who are doomed, less than human, and just naturally belong in institutions.
See the Auton lower court decisions, if you want an example, also this.
Michelle,
I'm not trying to contradict you, nor am I in any way an advocate for ABA. The reason I brought up the researcher/provider was in response to the initial comment by Neuroskeptic ("why is this?").
The conversation (between myself and the researcher/provider) took place for an article that's under consideration for publication, so I am not at liberty to go into detail, but mostly it did not concern the matter at hand anyway. When I initialized the conversation I was very much of the opinion that I'd dislike her, because I dislike ABA for reasons that have more to do with the de-humanizing approach then the scientific validity.
My purpose in my response was that the reason she promotes what she does is a genuine belief that she's benefiting the children. She believes she's doing good for children with autism and she believes that children with autism are worth the effort. Considering some of the local impacts she's had, she's not entirely wrong about doing good, even if she is somewhat misguided in her approach.
Again, I'm not defending ABA, but pointing to the middle ground -- so many people have opinions that are so strong and who refuse to listen to the other side, that it was a genuine pleasure to speak with someone I disagree with who actually could speak and listen. Seems rare.
As for the research itself, she referenced on-going research that is about two years from completion/publication; it did not occur to me to ask the parameters of their study because it wasn't relevant to the piece I was doing. The published study I found (http://www.wiautism.com/images/Sallows-Graupner2005.pdf) involved 24 children, so doesn't offer statistically valid results. I'm not sure if the study she referenced was a continuation or a different study.
My point was not to be critical of your findings, but my own surprise that this is so. It never occurred to me that the research base on ABA was not up to par with scientific standards. Then again, there are many instances currently and in the past of close-held beliefs that were called science but didn't/don't meet trust scientific standards.
"In Canada, ABA-based autism interventions have been demanded by autism advocates (including behaviour analysts) by insisting that autistics who have not received these interventions starting early in life (most autistics in Canada) are write-offs who are doomed, less than human, and just naturally belong in institutions."
That is unfortunate beyond words. First, it is unfortunate that anyone would be so ready to de-value others like that. I realize it happens and experience it happening with my own family, but these being called "autism advocates" just seems wrong to me.
Second, if the researcher/provider I spoke with gets typical results for ABA, I think they're going to be disappointed. In our conversation my source did not claim any "full recovery" (though she did use those words, which I object to because I don't consider autism something to recover from). Ideal improvement was measured by mainstream school attendance and having friends. Even with those goals (which doesn't imply not being autistic), success rates were only up to about 60%, from a base-line of about 40% of children who didn't receive ABA that attained similar "success" goals. Again, these are round numbers as it wasn't the focus of my article therefore my notes on that topic were less thorough.
If institutionalization is at all an option, then ABA is not the solution to prevent institutionalization. That institutionalization is recommended is appalling to me. Hopefully the progress which has been made in Wisconsin will be made in Canada as well. There's still much, much more progress to be made, but institutionalization is no longer an option, even for parents that would want to.
p.s. Would anybody be willing to give a reminder on how to do links in post on blogger?
In response to Stephanie...
1. If the (one) trial you refer to is not published yet, you should be able to refer me to where it is registered. Also, you describe this work both as "under consideration for publication" (which means submitted and/or under review) and as "on-going research... about two years from completing/publication." Studies which are completed aren't necessarily published, and these two descriptions are contradictory (setting aside that there seem to be reported findings, somewhere...?).
2. If you read what I've written, you will see that my concerns re dehumanization have been re the widespread dehumanization of autistics who have not received unlimited ABA-based interventions starting early in life. In the Wynberg trial decision, these autistics, the majority of autistics in Canada (self included), were judged to be unfit for "membership in the human community." This decision was (and continues to be) hugely popular with autism advocates.
3. As I wrote above, self-reported good intentions abound in those promoting autism interventions and treatments. This does not say anything about whether those treatments are of greater benefit than harm to autistics.
4. The authors of Sallows and Graupner (2005), who are major service providers, did not carry out their intended comparison between groups. Instead they lumped their groups together post-hoc, resulting in an uncontrolled trial.
5. I treat ABA seriously as a field of science, something autism advocates strongly object to. Mostly what I do is report accurately from primary sources, which I provide (see another example here). Also, I apply scientific and ethical standards that are widely recognized in non-autism, non-ABA areas. If you find any factual errors in anything I write, I would be enormously grateful if you would point them out and provide the requisite accurate information.
6. I don't have a "side" beyond seeing autistics (regardless of what interventions or treatments we have or have not received) as fully human beings who deserve the benefit and protection of recognized standards of science and ethics. Autism advocates strongly object to all of this also.
7. You can use usual html tags to post links on Blogger comments.
Michelle,
1) I am a writer. I was researching an article on autism research organizations and the usefulness of information provided for parents. Her research study was not of interest to the article, because it's purpose was useful for clinicians. I don't have access to the study. I'm not part of the study. I'm a freelance writer on the start of my career.
2)I'm new to your blog. I came here through comments you've made elsewhere. So, no, I'm not familiar with your posts. I understand your concern as it is expressed. I, however, am concerned about the dehumanizing of autistics and others (such as my husband who has bi-polar disorder) irregardless of what treatment they have or have not received. I'm also concerned with the humaneness of treatments utilized for these people (autistics and other forms of neurodiversity). I understand from your statements that this issue has a very unfortunate/sad/deplorable tenor in Canada. As it is being advocated in Canada, per your description, ABA has taken on a meaning that justifies eugenics and that is horrible. However, this misuse of ABA is not synonymous with ABA. There are ABA advocates in other countries who take an entirely different stance on the value of autistic life/existence.
3) I agree entirely. Treatments should benefit those who receive them. Furthermore, the first rule of medicine is supposed to be "Do no harm." I do not believe that ABA therapies meet these standards -- I have no proof, just my opinion based on the literature I've read concerning their approach. Furthermore, history has proven this standard hasn't been met for people considered inferior due mental illness/retardation. I think we both can agree that this needs to change. I think we both want to work to making this change.
4 & 5) I applaud your actions on this and find what information I've seen thus far in exploring your blog useful. Science is not my strong suit. My interest in science tends to be how it is reported. How it is reported and how many facts go into the report indicate the reporter's agenda. This is easier for me, personally, to understand than picking apart the studies themselves. I can tell a statistically invalid study from one that has suffient numbers to be widely applicable, and I can see bias written into studies that contaminate results, but that's about it. What you're doing is something I do not have the skills to do; but I do recognize the value of it and will come back for more. If I see errors, I would gladly point them out. But I have not seen errors in your research in this post.
6) I agree that autistics are fully human irregardless of treatment. I cannot say that I do not have a side beyond that, because I do. My "side" is to ensure that my boys have a high quality of life throughout their lives -- by this I do not mean I want them to be "normal," but that I want them to be treated with the respect and dignity they deserve and that they will have their basic needs and some of their wants provided for (preferably by having the opportunity to provide them for themselves). I want my children to be able to pursue their dreams without having to fight every day of their lives just to be recognized as human beings. And I want this for all autistics (and other forms of neurodiversity).
Whether I like it or not having these desires and these goals is taking a side, because there are those who don't want this. There are those who want autism to be cured and anyone who can't be cured is disposable. The autism advocates you describe seem like these kind of people. And they are on a different side they I am.
There are also people who have opinions that differ from me, but who are not diametrically opposed to what I want. These are those I wish to converse with, because you can actually communicate versus argue with them. The researcher/provider I mentioned was one of these latter people. She is someone who actually wants to improve the lives of autistic people, as individuals and in society, but has a different approach to doing so.
If the science of ABA is bad, then by all means attack the science. However, do not assume that all people who advocate ABA or use it are like those "autism advocates" who dismiss the humanity of autistics who do not receive this treatment or do not improve their functioning by society's standards after having it. Doing so will alienate potential allies who can help improve the science or help you debunk current studies.
7) Before I started the blog attached to my name, I hadn't blogged since 2007. The places I've had to do links since then have all had hyperlink buttons, including posting on my current blog. As much as I hate to admit it, I don't remember HTML any more because I haven't used it in so long.
In response to Stephanie, overall I don't understand a lot of what you've written. That doesn't leave a lot to respond to.
My suggestion to anyone is that if you are going to cite a study or studies (including providing "data" from these studies), it's a good idea to provide sources. All I have here is a claim that an ABA service provider has a study under review and/or (!) in progress, that does have some (preliminary? submitted?) findings.
I didn't mention "eugenics" and (again) my writing is mostly based on the published literature with respect to ABA-based autism interventions. I also write about how ABA-based autism interventions have been demanded, including by behaviour analysts, and the problems are not at all limited to Canada.
None of this is based on "assumptions." And again, if you can find any factual errors in what I've written, then please indicate where they are, so I can correct them.
Scrutiny and criticism are essential aspects of science, as opposed to an "attack" on science in any given field. As I've repeated many, many times, I've been a far harsher critic in the areas of cognitive science and neuroscience in autism than I have been of ABA in autism. This does not mean I am conducting an "attack" on cognitive science and neuroscience (the areas I mostly work in). It does mean that I take these areas seriously as fields of science, as I do with ABA.
In April I began a review of the literature on EIBI lovaas treatments (as well as others) using the available systematic reviews and meta-reviews as well as other critical commentaries and primary sources, mostly in peer reviewed journals. I did this because in my 20 years of being around young children w/asd did not match the claims being made by EIBI proponents; and, we are now being mandated to provide "evidence based treatments" and the assumption is that Lovaas type programs = EB txI am very disregulated to find every word in your blog to be true. The only "authorities" in the peer reviewed literature who make over the top claims about EIBI are those with professional, personal or financial relationships with the TX. The others, to various degrees, at least choose their words more carefully.Ironically, when I provide evidence based on independent sources, feels like I am holding a cross up in the face of a vampire; they don't even want to acknowledge there is broader base of science than their own. What can be done about this get more balanced information in the hands of the US public where the Hype, even in peer reviewed publications, seems to be most out of control?
Michelle,
It is clear we are not communicating well. You want me to cite a study, but I cannot do that because my source was a person not a published work.
I mentioned eugenics and the reason I did so is because forced institutionalization and eugenics are tied together in history. Belief that people need to be institutionalized because they are inferior -- the belief that anyone actually could be inferior -- relates to eugenics.
Your assumptions were not about the science, and I did not claim they were. Your assumptions were about the people. You said in your post: "For those promoting ABA-based autism interventions, claims of effectiveness unfounded in good quality research were only the first step." Not all of "those" promoting ABA make the claims of you're talking about and there are those who are trying to do research to scientific standards.
As to your objection to the word "attack," I suspect that just a cultural difference between Canadian word-choice and US word-choice. If your criticize the professional work of someone else through demonstrating flaws in that work, I would consider it an "attack" of their work. That isn't a bad thing. It's not a criticism of you or your approach.
In response to Stephanie, I suggest again that if you don't want to provide a source for your information about a study, or even the name of any author of this study, then it is probably better not to make claims based on this study (or studies).
But if you do make such claims, as you did, you shouldn't be surprised when someone asks you about the study or studies you are making claims about.
Right now I have no way to verify the claims you have made or to inform myself further. Where is this good quality research into ABA-based autism interventions, that you mention? I am hugely interested in knowing.
Now you are saying, without again providing any examples, that there are people (from what you've written, I would guess these are behaviour analysts and service providers) who promote ABA-based autism interventions and who do not make claims that these interventions are effective.
I would really appreciate an example of this phenomenon. And it would be interesting to know why anyone would promote an intervention in the absence of sufficient good quality evidence as to its benefits and harms.
And this phenomenon has not shown up in the peer-reviewed ABA literature with respect to autism. Nor has it shown up in public policy, litigation, legislation, media stories, websites and publications of major ABA organizations, the websites of ABA service providers, the websites of other organizations promoting ABA, major ABA textbooks and other ABA scholarly books, etc. These are what I write about.
Of course I may have missed something. But in order to locate and correct whatever error I've made, I would need sources and so on.
I continue to disagree that genuine criticism at a scientific level, as well as accurate reporting from primary sources, is an "attack" on science. This misconstrues what science is and how science works.
I read an open source article published last month in BMJ by a Dr. Steven Greenberg, titled:How citation distortions create unfounded authority: analysis of a citation network. BMJ 2009;339:b2680
I think the phenomena studied by Dr. Greenberg is at least partially responsible for the situation today: The belief that Lovaas or similar ABA based interventions have "well established" evidence, will restore a child to Normal and without they will suffer, be institutionalized, and result in the collapse of our economy. I wish I had the skills conduct a similar study test this hypothesis. Also, from my literature review it seems to be worse here in the US. From reading your posts, I think you and some of your colleagues could do this.
Here is a little more about Greenberg's study:
Objective: To understand belief in a specific scientific claim by studying the pattern of citations among papers stating it.
Design A complete citation network was constructed from all PubMed indexed English literature papers addressing the belief that...{ABA is .....} Social network theory and graph theory were used to analyse this network.
Main outcome measures Citation bias, amplification, and invention, and their effects on determining authority.
Results The network contained 242 papers and 675 citations addressing the belief, with 220 553 citation paths supporting it. Unfounded authority was established by citation bias against papers that refuted or weakened the belief; amplification, the marked expansion of the belief system by papers presenting no data addressing it; and forms of invention such as the conversion of hypothesis into fact through citation alone. Extension of this network into text within grants funded by the National Institutes of Health and obtained through the Freedom of Information Act showed the same phenomena present and sometimes used to justify requests for funding.
Conclusion Citation is both an impartial scholarly method and a powerful form of social communication. Through distortions in its social use that include bias, amplification, and invention, citation can be used to generate information cascades resulting in unfounded authority of claims. Construction and analysis of a claim specific citation network may clarify the nature of a published belief system and expose distorted methods of social citation.
© Greenberg 2009
This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
In response to Mizuki, I tweeted that very interesting and very relevant paper when it was first published.
You can also find an excellent bit from Ben Goldacre about it here.
Michelle,
As I explained, the study is in progress, so there is no published material. My source was a person, and I cited that source by supplying an early paper by the same person.
Second, I wasn't making a claim about the results of the study. I was demonstrating motive in response to another comment that questioned the motive. Not all ABA supporters share the same motive as those you've ascribed to Canadian autism advocates.
Third, I did not say she was not claiming effectiveness. I said she was not claiming ABA "normalized" or cured autistics. ABA is a therapy that is designed to teach functional skills and control "undesirable" behaviors; doing so does not make an autistic person non-autistic and there are those who use ABA who recognize that. She said her results (thus far in an on-going and therefore unpublished study) is that about 40% of children who did not receive ABA treatment developed to a socially and academically functionable level on their own or through another treatment. About 60% who did receive ABA treatment did so. She is performing the study to see if these results hold true on a larger scale and over a larger period of time. The results are not available because the study is not complete.
And yes, she is a provider. Her background is in research however. A researcher with a research budget following strict research protocol could not conduct such a study because American law doesn't allow experimentation without the individual's consent (which non-verbal minors cannot give to legal standards) unless they are the only population the research study could perform the study on (in which case it would still be a challenge). When the study is conducted as part of treatment (for which parental consent is sufficient) it is allowable. I'm not arguing in favor of the law, but that's the way the law works.
The reason I provided this information was not to advocate that ABA was effective (the claim you seem to be attributing to me), but to highlight that even if ABA proved effective 60% of the time, it would not solve the "problem" as expressed by Canadian autism advocates as you've described their point of view.
In response to Stephanie, here is what I wrote:
"I never presume to know motives."
And this is an accurate description of my writing. I haven't assigned motives to anyone.
I do write about public actions and statements though. These can be verified, for example, by reading the sources I provide. That's why I provide sources (and if you want more sources, just ask).
You wrote, re effectiveness:
"You said in your post: "For those promoting ABA-based autism interventions, claims of effectiveness unfounded in good quality research were only the first step." Not all of "those" promoting ABA make the claims of you're talking about and there are those who are trying to do research to scientific standards."
This is what I responded to (the claims I am "talking about" in that quote are claims of effectiveness). I'm still looking for someone, anyone, to point me in the direction of good quality research into ABA-based autism interventions.
For those who want more information about WEAP (and I did not know it was WEAP until the mystery person was identified as an author of the study she referred to), here is the WEAP home page, see also the WEAP Bibliography, which includes "Let Me Hear Your Voice." WEAP seems to be raising money for the National Autism Association, which promotes the view that vaccines cause autism. WEAP is a very big ABA service provider. I suggest reading their site, including their newsletters.
In Sallows and Graupner (2005), it was the original control group in which 60% of the children did well (by the usual ABA standards), while 38% did well (ditto) in the original experimental group. For the experimental and control conditions, I suggest reading the paper (and I suggest reading the manual they used, which was The ME Book).
If there is a totally different new trial, then it should be registered (it doesn't seem to be).
You said: "I haven't assigned motives to anyone."
But you have. Earlier you said: "In Canada, ABA-based autism interventions have been demanded by autism advocates (including behaviour analysts) by insisting that autistics who have not received these interventions starting early in life (most autistics in Canada) are write-offs who are doomed, less than human, and just naturally belong in institutions."
This statement attributes motives to the autism advocates in regards to their promotion of ABA. To re-word it to make the motive aspect more clear: They claiming that any autistic that can not function normally in society belongs in an institution; therefore, to avoid placing autistic people in institutions they promote the use ABA to force autistics to function normally in society. The logic of the motive is seriously flawed, but that is still a motive. I was responding as I did in response to this statement. I do not have enough information to dispute or affirm this motive as it is attributed to Canadian autism advocates. However, it is not the motive of the Sallowses (Ms. Graupner is also Mrs. Sallows).
Furthermore, even if the Sallowses research is accurate (I never claimed it was), it will not achieve the goal inherent in the motive as it is attributed to the autism advocates. If, as you say, they believe that autistics who do not receive ABA treatment belong in institutions, but autistics that do receive ABA treatment do not; then the basis of their decision has nothing to do with functional level. ABA, even if it is as effective as some claim, does not always produce functional skill sets. Sometimes, even without ABA (again, if the study is at all accurate), autistics develop these skills.
I was demonstrate a single flaw in the motive. That's it.
You said: "This is what I responded to (the claims I am "talking about" in that quote are claims of effectiveness)."
Originally, yes. However, you further elaborated that those claims were tied with institutionalizing autistics. If Canadian autism advocates are claiming ABA makes institutionalization unnecessary and not having ABA makes institutionalization necessary, then the results of the study (however poorly they were conducted) do not support that claim.
I was pointing out a fallacy in their logic; not a fallacy in yours.
In response to Stephanie, there is nothing whatsoever about motives of any kind in what I wrote, which is a verifiable description of what has happened.
To repeat myself again:
"I never presume to know motives. And in fact I have no idea. It's mystery to me."
You are free to make false claims about what I've written--your standards are up to you, after all. Fortunately, what I actually wrote is on the record.
The motive is inherent in what you said, not literally stated.
In response to Stephanie, you yourself are free to assign motives, mental states, etc., to whomever you wish.
But contrary to what you have falsely claimed (...for no reason I would presume to know), this is very obviously not what I did. You are free to persist in misrepresenting what I've very obviously written, but this does not reflect well on your own standards, never mind your priorities.
One last attempt at communication:
Motive applies not only to emotion, but also to intended action and explanations of those actions.
Your post concerned improper claims of the proported effectiveness of ABA therapy. In the comments you related that autism advocates claim that autistics who do not receive ABA belong in institutions. The inherent motive is that autism advocates claim the effectiveness of ABA in order to support providing autistics with ABA therapy, so (in their minds) they no longer belong in institutions.
If you see promotion of ABA and claims that autistics who do not receive ABA belong in institutions as separate things unrelated to each other, then fine. If you don't understand how the word "motive" applies to their interrelation, then fine. If you don't see how what you said relates the two, then fine. That doesn't change that relationship, nor does it change that "motive" applies to that relationship, nor does it change that this relationship is inherent in what you said.
If any of these are so, then it's not a difference of standards. It's a difference of thought processes.
As far as my priorities, my priorities are to initiate dialogues with those I feel can assist or are trying to hinder my attempts and the attempts of others to shape a better world for my children who have autism, so that they do not face stigma and marginalization when they are adults.
Stephanie, that sentence you're concerned about was only reporting specific events.
"In Canada, ABA-based autism interventions have been demanded by autism advocates (including behaviour analysts) by insisting that autistics who have not received these interventions starting early in life (most autistics in Canada) are write-offs who are doomed, less than human, and just naturally belong in institutions."
This sentence does not imply that all autism advocates or all behavior analysts have done those things. I find that making up a different sentence can help when I have trouble understanding something, so imagine you read this headline: "Accountants confess to fraud." Does that mean that all accountants confessed to fraud or that accountants in general usually commit fraud? Not at all. It's just reporting an event. In the same way, the sentence that concerned you is really reporting specific events. People calling themselves autism advocates really *did* make statements implying that most autistic people end up in institutions without treatment. Please do follow the link that was provided with that original sentence. Learning more might be really helpful if you plan to write about disability-related topics.
"Stephanie, that sentence you're concerned about was only reporting specific events."
Yes, exactly. Many thanks, Amy, and very well said.
And yes, it is about standards. Stephanie is free to make false claims, as is anyone, but given that accurate information is right here for everyone to refer to, this will only reflect on her.
And this will ony distract from the issues which in fact were raised in the original post, which in my view are crucial issues affecting the well-being of all autistics, no matter which interventions we have or have not received.
Michelle,
Your statement in this post also ties into your definitions as posted on the front page of this blog. Particularly: "Autism advocacy most often refers to the widespread effort to make the world as free of autism--of autistic people--as possible."
Those statements imply a consistency that goes beyond application to specific events to assumptions of meaning behind the term. The point is that using specific examples does not justify the use of the phrase most often. The phrase most often implies prejudice, not fact.
To initiate changes in the standards for scientific justification for treatments, cooperation is required.
Amy,
I did follow the link. And I am writing and being published professionally on disability-related topics.
I honestly have no idea what Stephanie is talking about, sorry.
However (taking a wild guess), if anyone has evidence that "autism advocacy" is most often given a definition different from the one I provide, I would be delighted to review this evidence.
Since Michelle has let this one go through to the keeper, can I address the repeated query "Is 'no treatment' better than ABA?" [quote marks added to remove ambiguity]
The obvious comment is that whatever the other treatment may be, if we're to start with a level playing field it's going to be a treatment that has approximately $60,000 (and up, of course) to spend. That would be one hell of a placebo.
Hi, hope I'm not spamming here, but I think this article is fascinating because I just finished a blog post on Autism Whispered entitled, "Why I Left ABA - and Why I'll Never Go Back." (I'm a neurodevelopmental therapist.) By the way, I really appreciate your courage in going against a widely accepted form of therapy. Great thoughts and thank you for posting!
http://www.autismwhispered.com/blog/why-i-left-aba-and-why-ill-never-go-back-part-1
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