Back from the far-away land of deadlines with some very-belated information from IMFAR (International Meeting for Autism Research) 2007, and some thoughts about researching autism interventions.
I saw two presentations involving data from early ABA-based interventions at IMFAR this year. Both studies are community-based.
A Canadian study was presented by Isabel Smith of Dalhousie (the abstract is here). Her ongoing study involves children in a government-funded ABA program in Nova Scotia. She was presenting data after one year for 27 autistic children with an average age just over 4yrs at intake, 6 of whom are described as "non-verbal".
Dr Smith reported improvements in various measures, 6 and 12 months after the children started in their ABA program. Does this mean the chosen ABA program is "effective"?
It looks like we'll never find out, because there is no intention of ever having a control group. Dr Smith cited ethical considerations as to why a control group was unthinkable.
That's a familiar argument: ABA-based interventions are known to be effective, so denying any autistic children the benefit of an ABA program is unethical. This is a subject in itself which I hope to get back to.
In this case, there's also the greater context: Dr Smith's study is an offshoot of the Nova Scotia government's decision to provide ABA-based interventions to autistic children in NS. First, the decision was made to fund the intervention (that is, provide a public program). Then the idea was to study it, once it was in place, to see if it worked.
So assigning children to a group that would be denied what had already become a government-provided program was out of the question. So far as I can tell, the utility of a non-randomized controlled trial (allowing for parents who might choose a different program for their autistic children) was discarded. Ergo--the effectiveness of this government-funded ABA program will be determined solely by an uncontrolled trial. This is now a CIHR-funded study.
And it all sounds like great news for autism advocates. ABA programs are indeed considered so effective--by governments, researchers, the CIHR, etc.--that controlled trials comparing the effectiveness of an ABA program to another program are rejected as unethical.
But the ABA program being funded by the NS government, and being studied in Dr Smith's uncontrolled trial, is a non-intensive, 15hrs/wk PRT (Pivotal Response Training) program. While PRT has some scientific support, there has never been a major controlled trial of PRT as a comprehensive autism intervention. So there has never been a major controlled trial of PRT as it is being studied and funded in NS. Regardless, non-intensive PRT is being assumed to be effective as a comprehensive intervention, in the absence of any evidence for this, such that any experimental design that risks being informative about its effectiveness is considered unethical.
Dr Smith's study is a ringing endorsement of the low/no standards of science and ethics that autism advocates have vigorously and successfully demanded for autistics. It is perfect evidence of why, in the presence of a massive bulk of autism intervention research, researchers still cannot scientifically claim to know how to help autistic individuals (Volkmar et al., 2004).
The other community-based ABA study was from the UK. It was presented with remarkable efficiency by Patricia Howlin. You can find the abstract here.
This study included an experimental group of 28 preschool children in early intensive ABA programs, and a control group of 16 children in "autism specific nursery provision" which, unlike intensive ABA programs, is fully funded by the UK government. Because this is a community study, the groups were not randomly assigned. Outcomes after one and two years were compared.
Dr Howlin showed graphed data from the experimental group kids first. As a group, they clearly improved over time in the chosen measures--just like the kids in Isabel Smith's study.
Beside these data, she then added the data from the control kids. It looked the same as the ABA kids' data. And indeed, she found no significant difference in outcome measures between groups after two years.
Instead, she found large individual differences among the children, regardless of which group they were in. Dr Howlin presented this data graphically.
Having presented her own data, she went on to present a mini-meta-study (well, I can't think of a better name for it) of ABA group designs. She started with the long list of how these studies are inconsistent with each other in multiple aspects of their design. Then she graphed how widely (and wildly) results in various measures differ among the ABA group designs where these data are available.
Dr Howlin's ABA study is in press at JCPP (Journal of Child Psychology and Psychiatry), but not yet available online. I'd like to see the paper before I comment any more on her actual findings. But if her findings hold up under scrutiny, they will be evidence of how autistics have been ill-served by the widely-accepted and -practiced autism advocacy position that true experimental designs--and more generally the scientific and ethical standards that serve to protect and benefit all non-autistics--are not something autistics deserve.
Volkmar, F.R., Lord, C., Bailey, A., Schultz, R.T., Klin, A. (2004). Autism and pervasive developmental disorders. Journal of Child Psychology and Psychiatry, 45, 135-170.
I to have not read the study conducted by SCAmP (Remington, Hastings and Kovshoff in press). I do have a copy of the initial report findings emailed to me from Dr. Remington (this is not the same as having an actual copy of the study... it is a brief overview of findings, context, methods). The report is published by the UK group "Research Autism".
In this report it is noted that:
"Differences between groups receiving EIBI and standard provisions were evident after 12 months and were maintained over the following 12 months... the size of the advantage for the EIBI group of children did not appreciably increase at 24 months". (p3)
Clearly we need to see the published research article before "dissection" but... the prelim. report does seem to indicate that there were between group differences and that the differences were noted at 12 months but did not increase at 24 months.
Oh my goodness, sorry folks... that last post was not related to Michelle's blog. I must find time to sleep. Sorry.
Hi Dave C.,
I heard some information about Remington et al. (in press) at IMFAR. Because this information was informal, and so far I have no way to verify it, I'm not going to pass it on. But I (strongly) suggest waiting to look at the actual design and data.
Hope you get some rest.
Those studies are interesting, to say the least. I'll be sure to find the "mini meta-study" when it's available.
What kind of a study do you think would be best, Michelle? I don't know if you have background in research design or not, and I certainly won't be the person who conducts such a study, but I'm curious as to what would be best, if someone were to advocate for proper study of autism treatment.
I'm not sure if Dr Howlin will publish her mini-meta-study. I hope she does. But the paper that's in press at JCPP is the UK ABA study.
If I ever get round to it [sigh], I'll write about an NIMH "working group" of researchers (they met between 2002 and 2004) who proposed what steps are necessary to research autism interventions.
There are two resulting published papers, but the first I saw of this was Tristram Smith's 2006 IMFAR presentation (he is first author of one of the related papers; Catherine Lord is first author of the other). I should really get around to writing about this... [adds to pile].
For a look at one way interventions could productively be studied, start with Aldred et al. (2004), a successful pilot RCT of a manualized parent-training intervention. Then look at the information about the consequent, now on-going, multi-site multi-year RCT involving 144 autistic kids--here.
The study design should take care of other interventions, which are left up to the parents. This carries on what was done in the published pilot study. I'm not necessarily agreeing with the intervention itself (including the goals set for this intervention), but just pointing out the study design as one possible way to find out if an intervention is helpful.
Hi Michelle -
Thank you for this thoughtful consideration of the two studies.
You and I have briefly discussed some of our views of the benefits (or lack thereof) of ABA over on Kev's blog a while back. This type of comparison is extremely helpful in any such conversation.
It is much appreciated that you take the time to boil down this information for those of us who are not as immersed - educationally, professionally, and personally - as you are.
Thanks, Michelle, I'll have a look for that study when next I'm at the University library. Design was what I was asking about, and I learn best from examples anyhow! :)
I remember once having heard of a group who studied parents being the "teachers" of language to their children with autism.
Instead of the usually cited 50% of children going on to communicate, 80% of the children communicated.
I appreciated this study, as I was one who could not afford the $60,000 dollars to send my 5 year old to an ABA program, and did it myself for free.
What it amounted to was skipping all "behavioral" aspects of ABA, and concentrating on the visual presentation of language in Catherine Maurice's book. I never made Ben sit in a chair or "look" at me.
Have you ever heard of this study? It would stop what I see as "throwing the baby out with the bathwater" of the criticism of ABA, and emphasize, in my case, the "teach a child in the way he can learn" of the VISUAL/KINESTHETIC presentation, versus the typical auditory presentation, of language.
I feel sometimes like a voice crying in the wilderness here...
This is it, the "Denver Model". Could be a rehash of the "lovaas" model, and it's "success rates".
Sally Rogers is with M.I.N.D. I don't know the politics of it.
I think in our case, going to a developmental preschool one-half day and working with Ben an hour a day, kept the "overload" to a minimum. That 40 hours thing bothers me.
I'm not looking for praise, but the language thing is so instrumental. I think some parents just do it intuitively by figuring out what their child needs without all the drama of the current autistic scene for kids.
For R.B., The Denver Model, according to Sally Rogers, "merges behavioral, developmental, and relationship-oriented intervention" (Rogers et al., 2006). So far, to my knowledge, there is no published controlled trial of this approach which shows any advantage over another approach.
For Steve D., thanks!
r.b. I just want you to know your voice has been heard. :)
the "teach a child in the way he can learn" of the VISUAL/KINESTHETIC presentation, versus the typical auditory presentation, of language.
have you seen
RB sounds more like Floortime than ABA to me.
Have you read Engaging Autism or Giggle Time.
I can recommend both.
I had ABA here for about 9mths. Yes, they "went through the wall" by fluke mostly... but the hardest part was getting rid of them after my youngest (the laid back, everyone compliments and loves, happy child) assaulted (clawed his neck with his fingernails after he jumped at him) his IBI male therapist finally after 9mths of "I can't work with that child and it's the child's fault". That was the last time he was in my house.
Aug... and he'll be off their "transition to school program".. I'm counting the days. They were at the school for the first 6 wks (Sept) before his teacher asked them to go. I'm shocked she lasted that long but they were only there a few hours/wk - about 3 I think.
They are nursery school (Early childhood Ed) trained. They are not speech paths, nor OT's.. they are not autism specialists.. All you have to do is see what they did to the NVLD one.. sent him behaviourally over the bend last July...And of course... "if I didn't do what they told me my kid would be a failure"... could have fooled me this last school year. He's done AMAZING!!!!
Pat Howlin is one of the biggest sceptics I have come across but listening to Rita Jordan recently convinced me it was not worth my researching this area (as I had intended originally) because of the virtual impossibility of ever having an effective control, or for that matter of eliminating other extraneous effects that might account for progress with whatever intervention you were studying.
Whoever is going to produce a credible comparason of interventions including intensive behavioral against other kinds is going to have a hard job and will need to be a lot cleverer than me at it. I shall be sticking to media for the time being, now that is something I know.
For Farmwifetwo, like so many others flogging autism interventions, Dr Greenspan has done a lot of marketing and very little science. The theoretical framework and goals of DIR/Floortime are also problematic.
From the description of "Engaging Autism" on Dr Greenspan's website:
"Secondly, his approach can be applied at a very early stage, when signs of autism first appear. Thus, the hope of preventing the full onset of autism becomes a real possibility."
"As cases of autism continue to rise worldwide, Dr. Greenspan's extremely successful Floortime approach is producing very promising results that could one day stem the tide against this dread disorder."
For Mr Rex, Dr Howlin has recently published a RCT of PECS (a form of ABA). Eric Fombonne is conducting a RCT of "More Than Words" at McGill. And see the information I provided to Janna, above. When scientists take the effort to apply them, those recognized standards of science (and ethics) work to protect and benefit autistics, just like they have long worked for all other human beings (who also present with "extraneous effects that might account for progress", last I looked...). Why would anyone find this fact surprising, or unacceptable?
The problem though, as I was attempting to point out, is that data of this kind being as it is based upon observing actors in a social sphere of activity can never have the same degree of certainty as tests of chemical reactions in a laboratory, for instance as there are so many extraneous factors that cannot be controlled for and so many unknown unknowns that could be invoked if they were known, to account for either the positive or negative hypothesis.
This research is essentially social research, wrap it up in the name of science how you will, and is never going to be as conclusive as anyone wants it to be.
Given that a lot of what drives the legislative practice as regards to what interventions are available, that is grossly political as we can see and driven by noisy minorities advocating loudly for one side. That same noise to signal ratio determines how money is spent in research.
If I wanted to be conclusively sure of getting funding from Autism Research in the UK I would have to tailor my research specifically toward what there current priority is. It can distort research programmes.
I think it is best for me to stick with the societal determinants that can affect the atmosphere in which interventions are decided, as that is equally important.
It is not the "science" that decides things for parents, but very much else.
What we can do to effect that atmosphere is important too, and that is where I can make my greatest contribution.
I hope it will not be very before too long to be able to make an announcement as to whether I have been accepted into the ranks of doctoral researchers. One thing is for certain it is a moving landscape (or should I say an atmosphere subject to many storms) and what the research will look like at the end will be very different from what it would if had been done as much as five years ago.
Very interesting, Michelle.
In Ontario there is an excellent opportunity to find a control group. The reason is that many children are on the wait list for ABA therapy. Those children have been initially assessed, and found eligible, which means that they have had a good range of pre-testing. But they don't get ABA services. How hard would it be to ask those children back for further evaluation after they have waited for two (three?) years, and compare them to the children who did recieve treatment?
I have been told by people who were involved with the initiation of the Ontario ABA program (and who had argued that other approaches should also be offered) that they were promised lots of research and follow-up to ensure that ABA was actually effective. Not much has been forthcoming. I have to say that it makes me worry about the inherent conflict of interest on behalf of the ABA providers. After all, they have a huge vested interest in making sure that ABA continues to be publically funded in Ontario.
Just to clarify, when I wrote "How hard would it be to ask those children back for further evaluation after they have waited for two (three?) years, and compare them to the children who did recieve treatment?"
I should have said "How hard would it be to ask those children back for further evaluation after they have waited for two (three?) years, and compare them to the children who did receive ABA treatment?
I also didn't mean to imply that the children who "waited" were being allowed to rot, or that their parents were ignoring them, they got no speech therapy etc. etc.
Again the really big questions need a longitudinal survey going right into adulthood to see the long term effects or not of ABA and other interventions, for instance TEACCH can be criticised for building dependency on supports and structure that just are not available throughout the lifespan and in every situation, much as ABA can be considered to create difficulties in reproducing conditioned behaviours in unexpected real life situations, never mind how much of it "sticks" or not.
Notwithstanding how the natural differential developmental curve of every individual superimposes itself on any education or learning whatever either imposing its cielings or exposing its limitations.
By analogy, a drag racer will reach a terminal velocity in a quarter of a mile, but that is it, no further acceleration whereas a formula one car will go on after the quarter mile to potentially higher average speed. (rather simplistic but the best I can do)
And there are many parents who, when considering treatments, programs, or what have you, are mostly wondering, "Will this help my child our family have a better day on most days?"
Even if there were a good way to quantify this, it's not the sort of thing anyone wants to study.
For Mr Rex, random assignment to groups works to ensure that the "extraneous factors", whatever they are, are evenly distributed between groups, and therefore are accounted for.
Lord et al. (2006) have helpfully pointed out that low-quality RCTs produce more favourable results for the experimental treatment (intervention, etc.) than high-quality RCTs.
For Jennifer, so far as I know (I would love to be corrected on this) behaviour analysts have ignored the issue of their own possible competing interests.
Re a wait list design in Ontario, that's a subject in itself (which arises only because decisions are being made about autistics on the basis of lobbying, rather than on the basis of science and ethics--and isn't some major autism advocate now promoting the view that we don't need any more research?). Here's just one small point (of a zillion possible): the situation of autistic children who are not receiving ABA/IBI because they are on ABA/IBI wait lists may be different from the situation of autistic children who are not receiving ABA/IBI because their parents do not want ABA/IBI services (ergo, these children would not be on ABA/IBI wait lists).
For Sherri, there is a very large peer-reviewed literature concerned with surveying the needs, feelings, well-being, satisfaction (with interventions) etc., of parents of autistic children.
Following on Sherri's comment and Michelle's response, I think quality of life is very important and should be studied. Finding an adequate, somewhat objective definition thereof, however, is rather difficult. Until you can define it, you can't measure it. And until you can measure it, you can't study it.
That being said, when I was thinking I might do a Masters in Psychology someday, quality of life was one of the things I wanted to look at, as well as long-term effects of various treatments. In other words, I wanted to compare a few of the more popular treatments with each other in terms of IQ etc. as they are usually studied as well as in terms of actual quality of life, of both autistic and family members.
But, I won't be doing my Masters in Psychology - I think I've pretty well decided that if I decide to do a Masters degree, it'll be in English, and the thesis I write will be about Jane Eyre.
Janna, I used the more general term "well-being" instead of "quality of life", but there is (as I wrote) major interest in the autism literature (including in the autism intervention literature) in the subjective well-being, satisfaction, etc., of parents of autistic children as reported by these parents.
The extraneous factors are not at all random than the intervention itself in terms of the real world and ecological validity because interventions are not carried out in laboratory environments and are not reliably observed, the scope for variability cannot be mathematically eliminated, indeed it is a rather dodgy use of maths to do that, more of statistical convention and house style than real use. If an event or observation cannot be accurately encoded or observed in the first place then the stats are subject to the inevitably variability of the data, garbage in garbage out as the saying is.
One has to realise the limitations of human cognitive powers in research design and execution, none of us are reliable observers, these studies are inherently no more scientific than most sociological research which uses the same positivist tools.
Knowledge advances in small steps but not absolutely, no conclusion can ever be said to be irrefutable, and if it were it could not be said to be a scientific one. Even mathematics cannot be externally validated as a system without recourse to self defining sylogisms and those is ultimately unprovable, this is because mathematics does not have that platonic pre-existance seperate from the world of matter, rather it exists because human cognition allows it within the limited number of dimensions we can percieve through our senses.
This is a very interesting post, and highlights the lack of appropriate standards used by ABA promoters. Is there any other area of research in which an unproven method will be used, because not to use it is considered unethical, where no comparison can be made?
I appreciate your explanations of these issues.
Janna, to hell with the Brontes and Jane Eyre, go for Mary Webb, so much more over the top.
Shropshire is wierder and wilder than Haworth anyday, never mind how the heights do wuther you won't want to be going widdershins round the stiperstones in a hurry.
As for Snailbeach (where the heroine of 'gone to earth' falls down the mineshaft whilst being hunted by a pack of fox hounds), I've been there, it's a wonder all the inhabitants are not chelating from all the lead spoil that is around seeping into the water courses.
Michelle, my goal was to look at QoL of the client, not the parents. That is arguably more difficult to measure if a child doesn't have a meaningful/effective method of communication.
Larry, I'm planning to look at the use of names in Jane Eyre. It's quite an interesting topic for me... names and their meanings are one of my more minor perseverations. ;)
"Dr Smith reported improvements in various measures, 6 and 12 months after the children started in their ABA program. Does this mean the chosen ABA program is "effective"?"
Well... depends on a few things, doesn't it?!
"It looks like we'll never find out, because there is no intention of ever having a control group. Dr Smith cited ethical considerations as to why a control group was unthinkable."
Oh boy... not again...
"That's a familiar argument: ABA-based interventions are known to be effective, so denying any autistic children the benefit of an ABA program is unethical. This is a subject in itself which I hope to get back to."
That's a circular argument she's made. Theye are actually known to be less than effective, and so a control group is ethically not just desirable but a requisite in order to establish effectiveness of the treatment regime being tested.
We both know that. Why doesn't she?
"Theye" -> They
Catching up again...
For Janna, you mentioned "family members", so I was just pointing out that this field is (and has long been) very crowded.
For Sharon, I don't know what happens in all other areas, but I do know that recognized standards (of science, ethics, etc) now exist because before they existed and were applied, people were harmed.
For Mr Rex, true experimental designs are one of the steps necessary before interventions and treatments (etc.) can be productively tested in the community. And the study of "the limitations of human cognitive powers" is called cognitive science.
Okay, thanks, Michelle. :)
Have there been many studies that looked at QoL of siblings? I wonder, sometimes. I care for autistic children who have younger siblings (usually just one, and typically only two or three years younger) fairly regularly, and these younger siblings often end up taking on the role of older sibling. Which isn't necessarily an awful thing, but (as someone who arguably "grew up too fast" myself) I do wonder about the long-term effects of this sort of thing.
This (the link is to a PubMed abstract) is an example of a sibling adjustment/quality-of-life study. If you look over at the "Related Links", you can see there are many more.
Quite Michelle, we are examining our own cognitive powers using a faulty instrument, the human brain. It's called the limits of knowledge and I am afraid some things are going to remain unknowable, all we can do as Weber said is make the best of what we can do, and in autism research design that can be reliably generalised to a large population damn near impossible quite a circular problem that.
I don't see how anyone can really practice good science without some grounding in the philosophy of science, in order not to have any illusions about what science can achieve and what it will leave forever open to debate.
For Mr Rex, finding out what is and isn't helpful to autistics is possible. The better the experimental design and the higher the standards of ethics applied, the better chance there is of finding out something and of actually helping autistic people.
The fact that perfection is unattainable does not mean that all courses of action should be abandoned or that all courses of action are equally imperfect, equally valid, equally harmful, equally productive, etc.
MD: "For Mr Rex, finding out what is and isn't helpful to autistics is possible."
MD: "The better the experimental design and the higher the standards of ethics applied, the better chance there is of finding out something and of actually helping autistic people."
MD: "The fact that perfection is unattainable does not mean that all courses of action should be abandoned or that all courses of action are equally imperfect, equally valid, equally harmful, equally productive, etc."
Larry: "Quite Michelle, we are examining our own cognitive powers using a faulty instrument, the human brain."
This is true, too; however, as Michelle has said, the fact of the non-existence of perfection is not a valid reason for at least attempting to find out what does or doesn't work for supporting people (autistics or any other people, for that matter). When researchers actually apply the ethical and other research standards to their work, it is possible to find out properly the sorts of things that help, and this is just using nomothetic studies. Add to that the utility of qualitative forms of research, and there's a wide range of techniques by which we can - when standards are properly applied in the use of these techniques - find out what works for groups overall and for the exceptions within groups.
Larry: "It's called the limits of knowledge and I am afraid some things are going to remain unknowable, all we can do as Weber said is make the best of what we can do, and in autism research design that can be reliably generalised to a large population damn near impossible quite a circular problem that."
Indeed I am saying we have to make the best of what we've got and I have given a lot of thought to experimental design as I was seriously considering an examination of interventions as a PhD thesis.
However for me I am on safer ground researching the video and DVD media that has really taken off in the new millenium. There's a lot of it out there and none of it has been critically evaluated.
It's horses for courses and I really will be chuffed as a bowl of badger fat if I am taken on to do that. Michelle won't like my supervisor though, they have already disagreed :(
"Indeed I am saying we have to make the best of what we've got and I have given a lot of thought to experimental design as I was seriously considering an examination of interventions as a PhD thesis."
Yeh, exactly... plus the fact that valid experimental study in education and psychology (essentially very closely-related study fields) are not easy to do.
"However for me I am on safer ground researching the video and DVD media that has really taken off in the new millenium."
Interesting... would be useful to have a good study on the relative merits of that sort of informational media.
"There's a lot of it out there and none of it has been critically evaluated."
"It's horses for courses and I really will be chuffed as a bowl of badger fat if I am taken on to do that."
Nice simile :)
Would be good though.
"Michelle won't like my supervisor though, they have already disagreed :("
Who is your supervisor? I'm supervising a local student here in Finland.
If I am accepted, Mitzi Waltz will be my supervisor, I recall that Michelle did not like Mitzi Waltzes paper on emancipatory research.
"If I am accepted, Mitzi Waltz will be my supervisor, I recall that Michelle did not like Mitzi Waltzes paper on emancipatory research."
Mind you, doesn't necessarily rule her as a bad supervisor... supervision's about the practical and presentational issues as well as the actually topic definition for a research project. I haven't seen Mitzi's paper on ER, and I don't know first hand what Michelle thinks of it, so I'm going to refrain from commenting on that matter (it's fairest to both women, I think).
Dr Greenspan has done a lot of marketing and very little science. The theoretical framework and goals of DIR/Floortime are also problematic.
Michelle, I hope that you'll write more on Floortime soon. We went to Dr. Greenspan for an evaluation and I came away feeling like one of Bettelheim's famous mothers.
If you seem reluctant to commit to doing 7-8 20 minute sessions a day, you are not the best mother for your child (who will likely end up on the spectrum). His specialty seems to be telling mothers they should quit their jobs to do Floortime.
Most disturbing to me was the implication that whether or not my child ended up on the spectrum was entirely up to me and my play skills.
Some quotes from him: "When your affect is high, he is normal. When it's not, he slips into what appears to be delay." and my favorite, "What do you mean you can't pay for that much therapy? If he needed a kidney transplant would you deny it to him on cost basis?"
I think at one point Floortime seemed kinder than ABA, but I am not so sure now.
Totally forgot about that comment I posted ... and thanks for the comment, I never checked for a reply afterwards. I've been blog hopping today...
I have discovered over the last year that Autism therapy of any shape or form is a waste of time.
But one must live and learn on their own.
Both kids are mainstreamed/integrated. Both are on opposite ends of the spectrum.
Both are treated "normally" with adequate supports.
Both are thriving and so very smart.
Why did I ever stress myself out so much????
Live and learn.
Interesting thread. Have any of you looked into Relationship Development Interaction (RDI)? It's a parent-centered approach that requires less intensive time with the child than Floortime because the parents are taught how to work the remediation principles into their normal routine. There is one study published in a peer-reviewed journal (Autism, Sept. 07) and several others in process. Also, Dr. Gutstein, the founder of RDI, is very much involved in the quality of life aspects of autism. He is involved in FARR, the Foundation for Autism Remediation and Research, one of whose missions is to work toward a commonly accepted definition for quality of life. In the "RDI Community", we define it with long-term measures, such as the motivation and ability to live independently, be financially self-sufficient, secure and maintain long-term employment, develop and maintain close personal relationships, be motivated and able to "give back." ABA focuses on short-term skill building and behavior control and to my knowledge is less focused on the long term quality of life measures.
I am the parent of a child whose autism has been largely remediated through RDI. I am aware of many other children with whom RDI has been very successful. I'm also a certified RDI consultant.
In response to Laura D, RDI is a highly-marketed autism intervention currently unsupported by evidence. Many years after extravagant claims started to be made about RDI (claims like those in Laura D's comment), there is still no published controlled trial.
Marketing an autism intervention, complete with extravagant claims, before there is any credible evidence to support it, is not going to help autistics and is likely to harm us.
The sole published paper studying the effectiveness of RDI (Gutstein et al., 2007) is an uncontrolled follow-up to a study that has not yet been published.
Dr Gutstein claimed both in 2004 then in 2006 that this earlier study was in press at JADD, and this is also claimed in Gutstein et al. (2007). But the earlier study, on which the "follow-up" is based, still has not appeared in the literature.
Dr Gutstein's views of autism are largely based on the work of Peter Hobson, who Dr Gutstein admires. Dr Hobson views autistics as less than human (as lacking what makes humans human), as incapable of intelligent thought, etc. See Hobson (2002).
As I've written somewhere else, autistics deserve better--better science, better ethics.
Where would I find this study?
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