It is a term that causes all facets of the autism community to calm down and listen: Evidence-based Interventions. It implies a sense of hope and security. “Why, if its evidence-based”, we say to ourselves as parents and professionals, “it is bound to be effective. After all, it has been proven … verified … it is evidence-based.” If I am a die-hard believer that if I “get the mercury out” then I will get my child back, then I want evidence to show me that my chosen path is the correct one. If I have a more skeptical nature and believe that science really hasn’t given us any cause yet, I certainly feel better exercising my duties by supporting my child with an intervention that provides the highest likelihood of optimal outcome. If I am somewhere in between, or have some completely different theory about autism (such as: I parent a Crystal Child), I still want to do the right thing. I want someone to filter through all of the scientific data and provide me with a roadmap for positive results. Dammit, tell me what to do so I can get it right!
Quite obviously the proper approach, the thing to do that will allow the greatest opportunity for your child’s quality of life in the long-term, is to follow whatever the prevailing scientific evidence shows is the best thing to do. Right?
Well ….. maybe.
Based on the most recent evidence released, considered alongside other evidentiary findings both collaborative and antithetical, we should no longer continue to provide ABA-type therapy to my son, Jason if we are stoic followers of the Evidence-Based approach. Oh, but we will, as we definitely feel that – despite evidence to the contrary – the behavioral intervention that Jason has undergone at varying levels of intensity since age 3 has been beneficial to him in any number of ways. But another study (more evidence!) states that ABA is not benefiting autistic children in any measurable way.
The purpose of this entry is not to call into question whether or not Evidence-Based Interventions are the correct interventions to utilize to support one’s autistic child. Instead, it is to promote a discussion on how we define Evidence-Based (hereafter referred to as EB), how we consider the effects of its application, how we ensure that it remains as undiluted a term as is possible, considering the number of scientific “camps” that will exercise territorial rights over it.
There are two things I would like to discuss up front:
First: In introducing this topic – one I feel is very important – I was directing my statements towards parents and professionals. Unlike most of my writings, I excluded autistic individuals. The reason for this is that – up until now, anyway – the views of autistic adults have not been seriously considered in determining the best “early-intervention” approaches to take. Like many others, I am interested in seeing this change, and believe that one legitimate way to start that change is to spark a change in the way autistic people are viewed within the context of this issue. Therefore, anyone who read the intro to this entry and did NOT think to themselves, “Where does the autistic viewpoint come into play here? What if the ‘evidence’ runs counter to what our adult autistic friends can tell us about a given approach?” then please consider yourself called-out. It is essential that you and I and all the scientists engaged in this dialogue put those considerations at the forefront of any decision-making process, as virtually all ethics-based decision-making processes cannot proceed without it.
Second: I have had several separate but significant events happen recently which have forced this issue to the forefront in my thinking about autism and what my son’s future might look like.
[1]Our funding for ABA stopped due to Jason’s age. We have paid privately for most treatments for our son, and done so with the understanding that he is benefiting from them. Adding the expense of his ABA is not easy, but we of course will do so (actually, have done so for a while) without any hesitation since we believe he tangibly benefits from it.
[2] I recently made an acquaintance who has been able to provide me with tremendous insight on many aspects of autism. To use the term acquaintance works only in the context of a semi-formal discussion such as this. In truth, I have made a friend. This friend has provided me with some incredibly profound and deep insights on the EB issue, among others, and I am extremely happy that I have found a like-minded person with whom I can discuss these topics.
[3]I read a very good assessment of the most recent study on the efficacy of ABA on Michelle Dawson’s blog. If one reads this analysis and also follows the trail Ms. Dawson leaves via links to other analyses, it is plain to see that a) EB is not as easy to define as one would think, and b) if I truly believe EB is the proper approach, perhaps it is time to drop ABA. As I stated above, we have no intention of ceasing Jason’s behavioral therapies – but does this them mean that I oppose EB interventions?
So, where to from here? I can think of at least 5 major topics of discussion on the issue of EB treatments/interventions. In my next few posts, I plan to review some of these issues – both positive and negative – that I see as being crucial to the welfare of autistic individuals. What I would like to do in the meantime is to invite all autism bloggers to discuss this issue - now. I have reason to believe that this discussion is urgent and timely, and that the more progress we can make on establishing a common position on this, the better off all autistic individuals will be in both the short and long term. Please join me in discussing this important issue in any and all forums.
28 comments:
Hi Steve D
There are several very good criticisms of the EBM I can include here. I do not know if you have these manuscripts therefore we can comment them, first?.
1-
EBM-1
2-
EBM-2
3-
EBM-3
Please let me know if you are interested on other manuscripts on the topic.
Hi,
You know I am not unbiased and I get a little hot under the collar if I think too much about true ABA (not Floortime that is called ABA or playing that is called ABA).
I challenge you to think of a time before ABA existed. Before Skinner (maybe not before Pavlov, but at least BS (Before Skinner). :-)
What do you think your son would need? How could you teach him? What would have been offered to him from academia? (not all good for sure...)
I feel like ABA (DTT and Lovaas and all) has become a cult. People tell other people that it's the only way to teach autistic kids. Period. But that's not true at all.
Laurent Mottron recommends giving kids access to very high quality learning experiences. So maybe buckets of sand and some cool toys where you can pour the sand through the hopper and make a wheel spin... lots of number toys like maybe Cuisinare rods... books, paper, paint.
Part of what kids did before ABA was they experienced the world on their own. They splashed in water and ran their fingers along a fence. I think that a balance is reached if the kid can have those kinds of experiences, which are relaxing and educational in their own autistic way, and then when the kid is relaxed you can offer him/her something challenging, a book, a recording or something.
There should be a balance between totally turning the kid loose and not directing him at all, and totally directing the "learning experiences" which is how real ABA goes.
Maybe you could get a book on Vygostky. Vygotsky's sort of the antithesis of Lovaas. He's really interesting and Russian and everything. :-)
If you haven't cruised around Dr. Gernsbacher's website, I recommend that.
"Based on the most recent evidence released, considered alongside other evidentiary findings both collaborative and antithetical, we should no longer continue to provide ABA-type therapy to my son"
Can you explain what you mean by that comment and perhaps indicate what "recent evidence released" you are referring to other than the usual Mottron-Gernsbacher-Dawson effort?
For Mr Doherty:
As is clear in his post, Steve is referring to a peer-reviewed study. I wrote about this study (Magiati et al., in press, which is now epublished) on my blog. Steve helpfully provides a link. On my blog, I provide a link to the this study's abstract (as well as the cite for the study). This means you can obtain this peer-reviewed paper and read it. This risks being a more productive course of action than making assumptions about a study you have not read.
For Steve:
Many if not most behaviour analysts would consider that there is no evidence to support an intensity of ABA-based intervention of less than 20hrs/wk. If I remember right, your son gets less than half that (we've discussed this before), though I can't recall what kind of ABA he is receiving.
The point made by Magiati et al. (in press) based on their and other data, a point which has been highlighted by many other scientists, is that there is a scientific consensus that "that no single approach is the best for all individuals or even across time for the same individual with
ASD." (Volkmar et al., 2004).
The fact that numerous false, exaggerated and misleading claims are made doesn't mean that we should throw out the notion that approaches to autism should be science- and ethics-based, or that it is impossible to discern what is or isn't science- and ethics-based.
Autistics deserve the recognized standards of science and ethics (and advocacy) that automatically protect and benefit non-autistics--and without which non-autistics could not proceed safely in society, much less have good outcomes.
Unfortunately, "autism advocates" have successfully demanded low or no standards of science and ethics for autistics. So autistics have been and continue to be seen as undeserving of these recognized standards. Autistics live the consequences of this every day.
An argument could be made that some sort of placebo should be given to autistic kids, just because of the strong placebo effects that have been found to exist in autism.
There are some problems with that idea, of course. But it would at least be better than all the unsafe placebos kids are currently given.
We were told while Ezra was in Birth to Three, again by the dev.ped at dx, and again by the woman who will be his teacher next year that ABA is the only way to go. Can't do 40 hrs? ok, 20 would still work. And all along, I just knew it wasn't for us.
He is our second-born, and his big brother has Downs. It was my belief that he could be fostered along in a similar slow and steady way, with one on one education, Speech, OT, PT. We are finding this effective.
I don't know if this goes along with anything Evidence-Based. I don't care. He is gaining skills. He is fairly cooperative. He is happy.
I have been looking at Holding (Attachment ~ , Festhalte~) Therapy, and it's aftereffects are appalling. I won't put my child through anything professionals or parents recommend if I have the slightest gut-reaction against it.
I saw a girl receiving stem cell therapy, and "recovering". Mom said, a couple more visits, and she might be "good". poor kid.
The evidence is with whatever has produced the most "functional" and happy adults.
One major flaw (from my point of view as a parent and a person on the spectrum) is that ABA removes the need to think about what the child is thinking. The thrust of Skinnerism is that you can observe behaviors from the outside and control them.
What they leave out is that the person observing the behaviors is mind-reading. Saying that this hand flapping is bad because.... and this staring is OK because... or this pacing must end now because... this lack of eye contact is bad because...
And no one ever consults with the autistic person, granted it's not always possible to consult with an 18 month old, but if one tends to assume that the kid is doing something because it might be the best thing for him to do at the time, instead of assuming that whatever is in vogue in that culture is imperative (eye contact) there can be some communication (respect) established.
Autistic kids act differently around people who respect them and people who don't. Add a rude teacher to an autistic kids' life and there will probably be a battle of wills and lots of wasted time. Add a loving, respectful teacher and more can be accopmlished. I think that ABA tends to atttract control freaks (some have blatantly abused autistic kids) and not the mothering and gentle type teachers that would be more acceptable to most autistic kids.
I can't support any of that with citations, they are what I believe.
The evidence lies with the fact that ABA has been "oversold" to quote Eric Courchesne, for one. That it's the only game in town in many places is just a consequence of its being oversold, overcontrolling lawyer from New Brunswick notwithstanding.
The evidence so far seems to go with the idea of teach parents how to interact with their autistic kids so as not to ignore and eventually shut off the kids' attempts at communication.
I think anothr problem is with the idea that autistic kids are SO exotic that you can't teach them with any techniques that work with typical kids. There's pedagogy for the normal kids and behaviorism for autistic kids because you can't reach their minds with teaching you have to enforce their actions with punishments and reinforcers. (GOOOD BOY!!!!!!! JOHNNY!!!!!!!!)
Janna once described meeting an autistic kid in a store. She knew the boy but hadn't seen him in a while. He spoke to her in a stilted ABA-ese. like HI! HOW ARE YOU JANNA!???
THAT'S GOOOOOOD!!
ARE WE HAVING A GOOD TIME IN THE STORE TODAY??? YESSSSS!!!! WE ARE!!!!
He was doing the robotic like thing that ABA is accused of creating. Maybe it's not the usual thing with ABAized kids, but come on. That's hideous.
Anyway, there is just so little data on what would be a perfect program because so much money and time have been misdirected to ABA. The TEACCH and Floortime people don't have data, either. No one does, as far as I can tell. The way to go is with congitive psychology that can show where the gains are really made and how, and with looking at the autistics who end up the happiest and feel the most loved and actually learn things. Keeping in mind that autism is a disability and it's possible that some people will never learn to use the toilet normally, and never learn to tie their shoes.
Admitting that that is true is reality, not caving in. Just like parents of blind kids might have to realize their kids aren't going to look them in the eye or understand colors. so what? There's a world of things they CAN do.
I meant to say that there is no "brand name" therapy that has tons of logically presentable data on why it's the best.
Bainian Acceptance Therapy is the way to go, but I don't have any data to support that. (see jypsy's testimony to the senate in Canada for more about BAT)
Maria - Thanks for the links - I'll be sure to read them.
Camille - This is exactly the kind of commentary we need - both of your comments. I agree with you on so many levels, and remember we don;t do anything like classic ABA with Jason. I only refer to it as ABA since that is the root "school of thought". I share your deep concerns about behaviorism. I'll get into how and why I think my son has benefitted in another comment or another entire post as soon as I get my thoughts together on it.
Harold - What Michelle said.
Michelle - Thanks for yur input, and I agree comletely. I am concerned, though, that even "low-standards" seekers are not the primary danger when adhering to EB approaches. I feel the whole thing can be hijacked by one school of thought over another, and that it can work to the detriment of autistic folks. That is what I plan to write about over the next couple of weeks, among other things.
I am fully aware that I have less experience and a narrower range of knowledge on this issue than you and many others do (such as, for example, Camille or Jypsy), and plan to use this "thought exercise" of blogging about it as a way to clarify some issues and, hopefully, advance other peoples' knowledge of the issues by eliciting comments from more knowledgeable folks. Please continue to comment, and be aware I will probably link to several of your archived posts.
Joseph - I always appreciate your perspective and your clarity of thought regarding the logic of these things.
Suzanne - We are not of the "40-hour per week" variety, not at all. We are more into what Camille was describing - just providing rich experiences. We are not afraid to use the "benefits" society puts forward for a boy like Jason to his advantage. We just now got home from his horseback riding place, where Jason won a 2nd place ribbon in a little competition. Jason's brother is not allowed to ride there, as he is not "disabled". There's no evidence horseback riding does Jason any good in terms of autism, but as a 5-year old boy he sure can benefit!
To all - There are lots and lots of views on this topic (I look forward to reading Maria's links to see more of them) and some very shrewd, powerful minds commenting here. Please feel free to take this issue up on your own blogs as well (not that you haven't been doing so for years, Michelle). I don't want to emcee this issue, I just want to use this opportunity of talking about it to learn more.
Hi Steve,
One reason standards of science and ethics exist is to prevent the kind of agenda-hijacking you refer to.
Another reason these standards exist is because in their absence, people are harmed (see, e.g., the story the late David Reimer, for a non-autism example).
Considering that there is no clear evidence for any system of education, I don't find it surprising that the same holds true when the people being educated are kids on the spectrum. Fashions in mainstream educational approaches change at about the same rate as skirt lengths and lapel widths, and with about as much guiding logic. We can expect patterns in the education of autistic kids to be about the same.
Joseph,
Could you provide some sort of reference to your claim that “strong placebo effects that have been found to exist in autism?” My observance of autistic children is there is no future anticipation,”belief”, of outcomes. I gave my son Benedril for his first flight after being given information that I believed that it would make him sleepy. I told my child this. The incorrect information provided to me and my son’s lack of anticipation of outcome were both proven by hyperactivity throughout the entire 3 hour flight. I have attempted to induce a placebo effect upon myself and my child with “medical” treatments, to no avail.
I can answer that one, Chuck. A very powerful placebo effect was noted during the clinical trials for Secretin. Strong to the point that some parents requested that their kids continue to receive the placebo, which I believe was sugar-water.
Here is a link to one study, I expect there are more to be found out there:
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=15977316&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
A parent suggesting a positive outcome would be observer bias, not a placebo effect. If the autistic individual said they felt better after receiving the sugar water, then that would be placebo, unless of course they were hypoglycemic as well.
Chuck -
Yes, you are correct. But often times Placebo Effect is a broad term used to describe many such effects, including observer bias. The author of the study and Joseph are both, I believe, using the term in the broader sense.
Given that broader sense. This would be a correct statement:
ABA is not EB and can only produce placebo effects
At what point can placebo effects become evidence based?
You lost me, Chuck. Could you phrase the question another way?
If a treatment is not evidence based and has reported positive outcomes, like ABA treatment for example, would there EVER be a way to make it EB?
Okay, I see.
Some people do support ABA as being evidence-based, Chuck. There is certainly plenty of disagreement on the issue. And you are kind of gettng to the heart of my questions on the issue:
Who decides what is EB or not? What if there are ethical objections? What studies are included or excluded. What "definitions" are used and who sets that agenda? In a strictly academic sense, I think I have a pretty good understanding. My questions are more autism-specific. Can someone out there make decisions for how my son "must" be treated? And if so, how can I trust that his best interests are at the forefront of the decision-making process?
Lots of questions.
“Can someone out there make decisions for how my son "must" be treated? “
Yes, parents do this daily for both NT and ASD children alike.
“how can I trust that his best interests are at the forefront of the decision-making process?”
Yes, parents do this daily for both NT and ASD children alike.
Is this approach evidenced based? No.
Are there reported placebo effects? Yes
Is everyone effected equally by placebo effects? NO
Should the lack of evidence or inequities in placebo effects stop that treatment from being offered?
Answering the last question will open a huge can of worms.
I would argue that parents are not observers, in that they cannot be expected to give a dispassionate evaluation of their child. And, yes, the placebo effect is seen in "bystanders" all the time, especially in pediatrics.
When the subject is unable to communicate (or when their communication is ignored or not solicited), the response of the bystanders (parents, in this case) is taken as a proxy.
Since the placebo effect works equally well on those who have not taken the "treatment" (since a placebo - by definition - has no actual effect at all), then it is perfectly reasonable to see a placebo effect in parents.
Now, if we were to ask the children (the "subjects") in these studies what their impression of the effects of ABA were, we might get an entirely different answer.
But they never ask the children.
Prometheus
In the secretin study the inactive substance was saline solution.
Parents swear by the wonders of stuff like drops of water given on the autistic child's tongue, all the time.
If they can see massive changes from stuff like magnetic mattress pads and water, then they can see massive changes from ABA, too.
I think Steve D's point was, what if some outside authority decided that one kind of therapy WOULD be offered to his kid and nothing else would be funded. That happens in different places with different therapies. Depending on what's in vogue in a particular area.
With ABA all kinds of stuff is offered under the guise of being ABA.... and all of it produces "results" one imagines... but so far not to much has been produced in the way of ethical evidence of what works best for teaching autistic kids (and adults).
"I think Steve D's point was, what if some outside authority decided that one kind of therapy WOULD be offered to his kid and nothing else would be funded."
Thank you, Camille, for restating my concern in a clearer fashion. And I am not just thinking about my own here - I am wary of the idea of THE treatment for autism being settled upon at all. There is so little homogeneity in the autistic population that I find it a bit of a stretch to believe any one approach is bound to benefit all subjects. One of Maria's links touches on that issue as well.
VAB - Excellent point, and one that has occurred to me often. Why do we need to be so 'perfect' in approaching educational issues for our ASD kids, when such an incredible margin of error is allowable for NT kids?
Prometheus - Thanks for clarifying that, and I agree with your argument.
We ask our child every day when he isn't sick if he wants ABA.
"Do you want to go to school today?"
He always smiles and answers yes.
1:1 ABA-VB Carbone trained. I would gladly submit the data collection as evidence, but I am sure someone in the county educational system would claim placebo or observer bias.
Camille
“… if some outside authority decided that one kind of therapy WOULD be offered to his kid and nothing else would be funded. “
This is the status quo that currently exists today. States and regions determine educational curriculums based on subjective opinions of consultants and subjective measurements of achievement from standardized tests.
Insurance companies may or may not cover “treatments” due to subjectively determined diagnosis codes and coverage determined by policy. EB is completely irrelevant from a medical insurance perspective, and completely subjective on qualifying for coverage of “treatments”.
That's not necessarily true, Chuck.
In California, once you are approved to receive funding from the Regional Center, you have a choice of RC vendors. We could have chosen from up to 8 or 10 different agencies, and could have interviewed them to determine their approach. Some I know of combine biomedical advice/guidance with behavioral approaches. Some focus on RDI-type approach. Some are straight-up ABA. Some run camps or surfing schools. Etc....
Same with school - my son's IEP is the product of my wife and I working with the school professionals to create an appropriate blend of OT, SLT, shadow/aide, etc to ensure Jason has a positive social experience at school and that his learning is not inhibited by unnecessary factors.
What concerns me is that, for example, under the guise of "EB", our choice of RC vendors is just one 'conforming' type of agency that only offers the state-approved method of treatment.
California determined the RC and the services that they provide. California determined that ABA is not EB for a child over a certain age. A vast majority of states offer a single digit percentage of what your RC probably offers. Is there any evidence that anyone on the spectrum in California is any better then anywhere else or is it just placebo effect?
I guess, when I evaluate any therapy for any disease or disorder, there are a multitude of things that go thru my mind.
First of all is looking to see if there are "evidence based" treatments out there. The next thing is I evaluate the strength and validity of that evidence. Are there multiple independent trials showing the same effect, was the study adequately controlled, are the statistics valid, who funded the study, were the groups studied similar to the person I am considering the treatment for, what was the degree of difference between the control and study groups, etc.
I also look at some "softer" variables. Things such as how intrusive is the treatment to the person's normal life, do they have adequate support to carry out the treatment, is there personality suited to this particular treatment, etc.
Finally, every treatment has to undergo a risk:benefit analysis. What is the risk of no treatment vs. the intended treatment(s). Potential risk to the person being treated is only accepted with clear recognized evidence of benefit in the majority of cases.
This may not exactly fit what you posted, but is the way I approach these things every day.
Joe
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