When It Comes to Autism and Research, How Open-Minded Should We Be?
How can you begin to advocate for patients without separating the chaff of nonsense from the grain of truth? Writing that some people report success with treatments that lack scientific support is not advocacy - it's stenography. Exorcism also lack scientific support, but since it's also difficult to study (what would the control group look like?), do we "keep an open mind", all in the name of patient advocacy? Of course not. So what's the difference between exorcism and chelation, efficacy wise?While I can agree, certainly, that our children need accomodation and acceptance - along with education, opportunities, and resources - I also feel that there are very real limits to what scientific research has provided and can provide to parents at this moment in history.It seems like every discussion about bio-med treatments for autism eventually circles back to the same point: that parents need hope, and all this skepticism and sciencey hole punching business hurts kids.
What rubbish. Our kids need clear-thinking parents who aren't so wrapped up in their own magical thinking and sense of titlement that they lose sight of what every kid needs - accommodation and acceptance.
What's wrong with that message?
Setting aside biomedical treatments, which are controversial in their own right, there are significant questions about the validity of research findings for non-biological treatments such as Applied Behavior Analysis, Floortime, RDI, and sensory integration therapy. Yet despite these questions, I am certain that these therapies can and do make a positive difference for kids every day of the week.
Ken's suggestion, it seems to me, is that we should wait for scientific validation before treating our children with any available therapy. But given that funding is limited, and that scientific research is slow at best, that would mean doing nothing - even in the face of anecdotal and limited scientific evidence from dozens of sources that certain types of intervention can make a real difference.
My approach, therefore, is to make information available about a wide range of treatments - along with information about the research behind those treatments. At times, I ask the developers of particular treatments to answer questions in their own words. I've also written several articles about how to select treatments, and how to evaluate their efficacy for a particular child.
I can't speak for exorcism, since it's a bit outside the realm of my knowledge. But I can say, for example, that I've seen Floortime and PECS (among other treatments) have a real and positive impact on children I know.
What's your take on this issue? Is it acceptable to try or even advocate for treatments that have not been thoroughly researched using double-blind, placebo-based methods?
Comments
I myself in one area of the net offer all the info I find, regardless of what it is. The information is presented and in the end, the parent decides if it’s of value to their family and child.
As for bio-med treatments, as was mentioned, public opinion is what ever it is. If it works for you then who really cares what others opinions are? Bio-med treatments in MY opinion treat actual medical conditions than it does autism. Some of these kids do need these bio treatments and maybe woul dif they had autism or not.
It’s not all that easy being ‘need clear-thinking parents’ when you have medical issues on top of autism, and when there’s a zillion choices out there. Accommodation and acceptance is only a peace of the puzzle for parents. It’s only part of the ingredients. You also often have to add tools and intervention choices for that child to ever be successful. If all a parent offered the child was accommodation and acceptance, we wouldn’t be doing our children justice.
Even if there was thoroughly research using double-blind, placebo-based methods, could one then say they would work for ALL children with autism? No. each child is an individual and what works for one has never always worked for all and in the future I doubt there ever will be such a thing. Children all progress at different rates as well.
So what one does through out this mind boggling puzzle of attempting to be as clear thinking as possible, is read and speak to other parents, other therapists. Decide if this or that would pertain to your child and not hinder if it might work for another even if it didn’t for your child.
On a side note example, RDI is not for everyone and neither is ABA however, RDI worked for us and I remembered I had an imagination (it was a tad bit rusty). Not all parents are willing to do the bulk of RDI daily or annoy their child with flexibility, but for me it became as easy and natural as redirecting did. Did it take autism away? No. Did it make all social settings just great? No. Did it help my son to be more flexible? Yes. Will it work for your child? I really wouldn’t know nor did I know how it would be for my child. Did that stop me? Nope.
You will never know if you sit around and wait.
Dad of Twins, you might want to work on your clear thinking skills - you’re pulling double duty!
When It Comes to Autism and Research, How Open-Minded Should We Be?
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Lisa you said:
“there are significant questions about the validity of research findings for non-biological treatments such as Applied Behavior Analysis, Floortime, RDI, and sensory integration therapy”
You are presenting these treatments as though they are equal in terms of evidence in support.
Of those you list ABA, and ONLY ABA enjoys substantial professional support as an evidence based effective treatment for autism as described by the:
1) American Academy of Pedatrics, 2007
“Applied behavior analysis (ABA) is the process of applying interventions that are based on the principles of learning derived from experimental psychology research to systematically change behavior and to demonstrate that the interventions used are responsible for the observable improvement in behavior. ABA methods are used to increase and maintain desirable adaptive behaviors, reduce interfering maladaptive behaviors or narrow the conditions under which they occur, teach new skills, and generalize behaviors to new environments or situations. ABA focuses on the reliable measurement and objective evaluation of observable behavior within relevant settings including the home, school, and community. 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.31–40
Highly structured comprehensive early intervention programs for children with ASDs, such as the Young Autism Project developed by Lovaas35,41 at the University of California Los Angeles, rely heavily on discrete trial training (DTT) methodology, but this is only one of many techniques used within the realm of ABA. DTT methods are useful in establishing learning readiness by teaching foundation skills such as attention, compliance, imitation, and discrimination learning, as well as a variety of other skills. However, DTT has been criticized because of problems with generalization of learned behaviors to spontaneous use in natural environments and because the highly structured teaching environment is not representative of natural adult-child interactions. Traditional ABA techniques have been modified to address these issues. Naturalistic behavioral interventions, such as incidental teaching and natural language paradigm/pivotal response training, may enhance generalization of skills.13″
2)MADSEC, (Maine Autism Task Force Report) 1999-2000
“There is a wealth of validated and peer-reviewed studies supporting the efficacy of ABA methods to improve and sustain socially significant behaviors in every domain, in individuals with autism. Importantly, results reported include “meaningful” outcomes such as increased social skills, communication skills academic performance, and overall cognitive functioning. These reflect clinically-significant quality of life improvements. While studies varied as to the magnitude of gains, all have demonstrated long term retention of gains made. Other major contributions of ABA to the education and treatment of individuals with autism include:
• a large number of empirically-based systematic instruction methods that lead to the
acquisition of skills, and to the decrease/elimination of aberrant behaviors;
• a technology for systematically evaluating the efficacy of interventions intended to affect individual learning and behavior; and
• substantial cost/benefit.
Over 30 years of rigorous research and peer review of applied behavior analysis’ effectiveness for individuals with autism demonstrate ABA has been objectively substantiated as effective based upon the scope and quality of science.”
3) Office of the US Surgeon General
“Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior. A well-designed study of a psychosocial intervention was carried out by Lovaas and colleagues (Lovaas, 1987; McEachin et al., 1993). Nineteen children with autism were treated intensively with behavior therapy for 2 years and compared with two control groups. Followup of the experimental group in first grade, in late childhood, and in adolescence found that nearly half the experimental group but almost none of the children in the matched control group were able to participate in regular schooling. Up to this point, a number of other research groups have provided at least a partial replication of the Lovaas model (see Rogers, 1998).”
Harold - of course you’re right that ABA is far better researched than, say, RDI! But there are many folks who point to issues with ABA research, ranging from problems with selection of subjects to issues with controls, etc. There are also concerns that ABA (at least in its “old original” form) teaches disconnected skills - but doesn’t prepare kids for real-life situations.
My point, actually, is that it is easy to find holes in the ABA research - or, frankly, in most of the research that relates to autism. But the fact that it is possible to poke holes doesn’t negate the undeniable fact that many of these treatments are, nonetheless, effective for MOST kids MOST of the time.
That’s not to say that research is worthless - and of course we should continue to press for and underwrite “gold standard” research on all of these approaches.
In my opinion - just a guess - we will probably find that all of the therapies that involve autistic kids with 1:1 interaction with engaged, talented adults is very helpful indeed. And again, just a guess, I don’t suspect it matters a whole lot whether the engaged, talented adult has a certificate in ABA, RDI, Floortime, PECs, or whatever - but that he/she has the energy, patience and imagination to stick with it!
Lisa (Autism Guide)
The issues is parents try many things and if parents attribute healing to things that not only don’t work in the majority of true autism cases then they can do harm. I personally think there should be a cap on how much one should be able to charge if it’s not proven to be effective.
Parents are not always the best person to chose the right therapy of the child. Many parents are made to guilty and pushed into expensive and even dangerous therapies.
These are smart loving parents.
Many of the scams like holding therapy claim %100 success rate.
If that were true everyone would be doing it and there would be no Autism.
While I do floortime, play, flashcards and sensory.
Only school based play groups, aba and sensory have been proven by studies to Work. Aba unlike early studies, success has shown to be more modest but it’s proven not to be anecdotal.
Sensory was only recently backed by a major study.
When it comes to research how open minded should we be?
I have a wounderful child who just so happeneds to be Autistic. Because I want my son to be independant when he grows up ( he is thirteen at the moment)anything that could be helpful is my preogitive to investigate. It’s obvious that the medical community does not have the answers. I as a parent will find them. How ever odd they may seem.
When It Comes to Autism and Research, How Open-Minded Should We Be?
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As near as I can tell, there are only 2 autism treatments proven to work:
(1) the passage of time, and (2) unconditional love. (OK I can’t really prove the second, but at least it does no harm.)
Quite right, Morgan, and given enough time, and no control group, tap water can look like a cure.
There was an autisic writer who wrote a satire about horse poop being a cure for autism. He had people writing him how to use the horse poop cure.
I work on a nation wide psychic line recently I had a mother call she did not call for her child. What I found is I could not find any thing wrong with her 16 year old child she told me he could not speak What I discovered he has a creative writing gift he can not read or write. This just for her case I told her I wanted her to try another form of communication by reading to him with a picture book. I wanted her to use her picture write love her name. In this case we have to find away in. This may all sound crazy I have these communication problems between coulpes I try and teach another way to communicate. Some how the mind body and spirit is not putting it all together just like a blind person or a deaf person we have to find another way that works.
“Ken Reibel actually reported to my insurance company that my sons were receiving biomedical treatment. I guess he hoped that our family would have our insurance coverage dropped. ”
Are you serious? This is straight out the quackwatch manual and should be called exactly what it is.. harassment. Maybe all the folks being attacked should group together and work on fighting back. Give Tim Bolen a look. http://www.bolenreport.net/index.htm
Why, Lisa Jo, do you even consider Reibel’s opinions at all. He is clearly stalking and harassing parents who “dare” to go against his wishes. Not the sorts you want to have turn on you.
At first, I was going to write a reply to Ken Reibel’s assertions.
…But then I read Dad of Twins’ post. If that’s a true story, then Ken should never be allowed to participate in this blog EVER AGAIN.
Ken has lost any moral authority to engage on these matters. His arguments already lack any logical or scientific merit.
I hereby shun Ken Reibel. Lisa, I hope you will do likewise.
-Bob
p.s. Dad of Twins — you should contact a lawyer in your area. There are some causes of action you could pursue against Reibel. Might save some other parents from going through what you went through.
I think I may have made an error in posting this particular piece. I’m going to end comments at this point, since it’s becoming a very personal conversation.
Thanks to all for their understanding.
Lisa (autism guide)
Concerning chelation,
Isn’t it telling that this treatment, which has much in the way of very favorable anecdotal reports to recommend it, has never been tested for autism? Oh, I know there is finally one team, I believe a chemist and another faculty member, who are finally testing it, or were testing it, but I haven’t seen any results yet. Why isn’t this potentially very promising treatment evaluated? Is it because it may be damning to the heavy metal pushers?
A month has gone by and I haven’t heard from anybody’s lawyer. Can we all assume the defamatory statements made against have ceased?
Where is the post from DadOfTwins? Is this true about Ken Reibel? If it is, this is utterly reprehensible and appalling.
I think that AutismNewsBeat should sue to have this post taken down.