Saturday, January 25, 2014

An analysis of the American Occupational Therapy Association's narrative on sensory integration


New day.  New information.  Same narrative.

The January 20, 2014 OT Practice publication has a brief article under the 'Industry News' section on page 2.  The article is entitled Study Finds SI Improves Function in Children With Autism and it links to the recent Schaaf, et al (2013) article that I posted about two months ago.

What has happened in the last two months?  Well, there was a lot of social media conversation about that article.  On December 4th Diana Henry posted a link to the article on the OT Connections site and entitled her message thread "OT/SI: Finally recognized for treating autism!"  Some very beginning conversation occurred, which was very encouraging, but there is not nearly enough interest in discussing the way that we herald these studies when they are released.  My post in this thread encapsulates some concerns about designs that are reliant only on parent report:

When the results of complex studies get reduced to soundbites I think that bad things can happen.  An example of this is the Ben-Sasson et al. (2009) study that reported that 16% of 7 to 11 year old children had symptoms of SPD-SOR.  This statistic is widely repeated, but what is not widely repeated are the investigators' other statements in that article including "Nonetheless there are limitations to relying on parent report, as parents may employ varying thresholds for rating similar behaviors due to differences in memory and emotional biases."

Similarly, an earlier study in younger children (Ahn et al., 2004) conservatively calculated a prevalence of 5% which increased to almost 14% if they included non-responders in the calculations.  This is another study and another statistic that is widely repeated, but what is not widely repeated is "These estimates must be validated with a future rigorous epidemiologic study."  That statement is rather clear in the article, but we have not acted upon this call to action.

Well ten years have passed by and there have not been rigorous epidemiologic studies, but that doesn't stop anyone from quoting the statistic even when trying to make persuasive arguments about SPD's inclusion in the DSM.  I never understood that.

In fact, rather than having any kind of corroborating and rigorous confirmation of these findings, we simply have accepted preliminary information based on parent report as 'fact' and we have moved on to more parent reporting of progress that now perches atop the parent reporting of the 'diagnosis.'

I am vocal about these issues because they hit at the very core of how we are perceived by other colleagues.  Even if we triangulate our data, and I agree that multiple informants are helpful when dealing with reporting instruments, how do we even know what the data is that we are collecting?  In simple terms, if the bus driver, teacher, and art teacher all report something to us, how are we to be sure what that problem is and what its root cause is?

If we are unsure about the root cause, on what basis are we forming our treatment?  The recent article (Schaaf, et al, 2013) makes every assumption that the cause of the problems are sensory, and the only validation of progress is the report of the parent on the very specific GAS statement which may have been worded or explained in sensory terms (e.g. Toothbrushing is unpleasant...).  Parents, unable to consistently separate their own bias and then heavily influenced by the 'framing' of the problem by the GAS statement, report progress during the sensory-based GAS conversations.  However, when we ask the same set of toothbrushing and other ADL skill questions in a neutral way on the Vineland then suddenly the children have not made so much progress?  It just doesn't add up.

The only possible conclusion is that some form of bias is influencing the parent reporting on the GAS goals, and that the most likely cause in my opinion is the 'framing' of the problem by the therapists as well as their own expectations and manner in which they have come to define the problems based on this feedback.

None of this means that there are not sensory components in some or even many of these issues.  What this means is that we are still at square one with our assessments and research designs.

Christopher J. Alterio, Dr.OT, OTR

References:
Ahn, R. R., Miller, L. J., Milberger, S., and McIntosh, D. N. (2004). Prevalence of parents’ perceptions of sensory processing disorders among kindergarten children. American Journal of Occupational Therapy, 58, 287–293

Ben-Sasson, A., Carter, A.S., and Briggs Gowan, M.J. (2009). Sensory over-responsivity in elementary school: prevalence and social-emotional correlates. Journal of Abnormal Child Psychology, 37, 705-716.

Schaaf, R. et al (2013). An intervention for sensory difficulties in children with autism: A randomized trial. Journal of Autism and Developmental Disabilities, published online at link.springer.com/.../fulltext.html


 After this conversation on the OT Connections site, Susan Lin (who is the Director of Research at AOTA) sent out this Tweet:

I invited her to join the conversation on OT Connections to discuss the rigor of the study's methodology but she has not yet joined.

This is an important issue.  The tweet states that this study finds that sensory integration improves daily function.  Actually, the study finds that the sensory integration group did better on parent report of goal achievement but there was NOT any improvement on adaptive behavior as measured by a gold standard standardized test (the Vineland).

There is a big difference - and the truth gets lost in the soundbite of Twitter.

Two more things happened since that time, however.

First, the National Professional Development Center on Autism Spectrum Disorders located at University of North Carolina Chapel Hill released its update on evidence-based practices for children who have autism. This group screened 29,000 articles about autism and made recommendations about evidence based practices.  In many ways this study replicated the National Autism Center's report.  This new study also listed sensory integration approaches as having 'Insufficient Evidence.'  I am sure that there can be criticisms about what articles they did and did not include, or that they ignored evidence, or that they did not address fidelity issues, or that it is a vast conspiracy, but at the absolute core of all this there has to be some admission that this is the second major national study of evidence based practices that states we still need better research on sensory integration.

We also have to remember that between these two national studies there was the American Academy of Pediatrics position paper that recommends a 'careful' approach to using sensory integration as a treatment model. 

But back to the present - and the article appearing in OT Practice that seems to be absolutely oblivious to the conversations occurring on AOTA's own website, oblivious to two national studies that state sensory integration has insufficient evidence, and oblivious to the recommendations from the American Academic of Pediatrics.

Not paying attention to the feedback from the outside world is DANGEROUS to the occupational therapy profession.

I believe that most people would agree that most people who have autism have sensory processing problems.  It is right in the DSM-V criteria.  However, there is disagreement about the best ways to treat those problems.  Occupational therapists have a lot to contribute to the treatment team about these issues.  However, when the professional association continues to focus on promoting a treatment approach that is not supported by the evidence it causes damage to our professional standing and the way that others view the legitimacy of occupational therapy.

We should not stop our research about sensory integration but we should hear the feedback and label this approach as 'experimental.'  We should stop trying to push for reimbursement on experimental treatments until we have evidence that begins to satisfy the external community.  By pushing for reimbursement before the external community is satisfied we jeopardize reimbursement for many other occupational therapy treatments.

The occupational therapy community needs to ask the question "what is it that is causing us to ignore the feedback of respected professional colleagues and what do we need to do to ensure our professional standing for the future."

If we believe that occupational therapy has "distinct value" then we will take the appropriate steps to make sure we are not alienating ourselves.

5 comments:

Cheryl said...

I agree with you 110% but part of the problem is that despite the absence of rigorous research, parents and even other professionals have bought into sensory integration hook, line and sinker -- and militantly so. I've never seen anything like it. Suggest to them that behavioral strategies might be more effective than sensory for their child's particular configuration of issues and they are offended and want nothing to do with it. Anything involving making the child aware of his behavior and its outcomes is almost viewed as inhumane. It seems to be commonly accepted now by both parents and other professionals that all intervention must take place on a subconscious level, and any awareness on the part of the child that their behavior deviates from the norm must be avoided at all costs.

Do you have any insight on how OT's have managed to garner such unquestioning and unwavering support of SI from parents, when they tend to flat-out reject more well-researched methods such as ABA as cruel and dehumanizing?

Christopher Alterio said...

Hi Cheryl,

It is always easier to understand a condition as associated with some external phenomenon and then hope that some external protocol can cure the condition. I can now label myself an old-timer and I have seen many families trying to deal with intractable behavior problems. Facts are that behavior problems are multifactorial and related to internal coping factors and dysregulation (aka 'sensory processing')as well as contextual factors of parenting, socioeconomics, environment, opportunities, role modeling, etc. It is hard to fix a multifactorial problem and too easy to want to blame it on a 'condition' and that is the lie that OTs have sold for many years. It is a shame, actually, because our better professional judgement has always been to understand functional problems in context of the rich interplay between conditions and external context. With SI, we just want to throw the external context right out of the equation and blame it all on the unseen and unknown neurological process. It is so wrong.

The 'easy answer' was to wait for some biomedical breakthrough - and that is what we have been telling families for many years. There has been no breakthrough and now we have reached a point of desperation after being shot down for DSM inclusion and with several national studies telling us how limited our evidence is that now OTs are resorting to charging families money so they can learn how to convince the 'naysayers' that their children really have this so-called disorder. I was going to pay the $15 to attend this 'conference' just to see what they were telling parents but I can't bring myself to support their efforts. It is such a disservice, and a professional embarrassment, that leaders in our profession actually resort to this low level of conduct.

In my Pediatrics class when I was an undergraduate my Professor told us that we were on the verge of great scientific discoveries and we would be able to identify the actual cause of SI dysfunction - probably being related to neurochemical problems. Since that time there has been some research in this area but nothing clinically helpful for OTs. We have learned a little more about neurochemistry and a little more about migration errors but no one is able to even make a claim that there is a unitary disorder that we are talking about - and we certainly don't have ways of predicting or treating anything based on this knowledge. So after 30 years of waiting I am officially bored and I am not going to carry the water on this treatment approach any longer.

Sensory integration models do not scientifically explain, predict, or even help ameliorate behaviors. We are much better off re-framing our treatment in adaptation, coping, motor learning, and behavioral models - all of which we actually have evidence for.

Chris

Heather said...

I am a school based OT, and I am very interested in this issue as a therapist who is not "all-in" on the side of SI treatment. I do believe that the concepts of sensory integration & OT are very much woven together. I see parents and teachers referring to OTs as experts in this area, which is good and bad. Good, in that we are identified as being valuable sources for knowledge, but bad in that the evidence is not currently there to support this particular intervention, and other professionals likely know it, which impacts the reputation of the profession. I believe that assigning a single cause (is it sensory or is it behavior?) is not useful for successfully improving function, and that occupational therapists could easily be the holistic medical practitioner that can successfully look at the whole picture and be the key to supporting successful participation for these children and their families.

I think it is important for OTs to
1) work together and work outside of the OT field to determine what information we need and how we can answer these questions related to SPD and sensory integration treatments.
2) be open to the results of said research, including honestly representing non-conclusive and non-supportive results.
3) open all of those results to practicing OTs.
3) in the meantime, OTs on the front lines need to change from "how it's always been done", and consider the true cost-benefit to these families, both emotional and financial, and provide disclosure about the current evidence regarding this treatment.
4) also, we as OTs working with children and adults with autism should consider the needs and wants of our clients, and be truly client-centered. There are many personal accounts that can be read online, and most do not consider their "sensory behaviors" to be limiting, except in the eyes of "neurotypicals."

Cheryl said...

Thanks for taking the time to respond, Chris. As a school-based OT I often find myself being called in for "sensory issues" which upon closer observation seem to have a strong behavioral component (eg, destruction of personal or school property, violence toward other students, etc.) It is frustrating to see parents and teachers eschew consequences (or even rewards), instead insisting upon sensory strategies that take away from instructional time and isolate the child from his peers. I just wonder how long the bloom can stay on this rose....

Anya Sanchez said...

I agree with Cheryl. I feel very alienated when I use behavioral strategies and environmental modification techniques more than "classical SI" interventions because many of my colleagues here in Manila prefer the latter. I am open to the possibility that classical SI techniques might prove to be effective. But I believe that we should not tout them as the ultimate solution to sensory processing difficulties, unless we have a lot of sound evidence to back up such a claim. I also think that OTs who would like to adhere to ethical, evidence-based practice and would like to honestly assess the merits of SI interventions should be emotionally prepared to get marginalized in practice if they want to keep their integrity. Based on my experience, we cannot convince a lot of OTs who have embraced faddish interventions uncritically to have a more scientific approach by only publishing peer-reviewed findings or by tactfully arguing with them. Many of them have made up their minds that they prefer these experimental interventions instead of the scientifically validated ones. So while I am all for publishing more credible scientific research, I think the best way to counteract the quackery in our field is for highly-principled OTs to continue working hard at being as scientific as they can be even if it makes them unpopular. Then let the results of our work speak for themselves. Moreover, we should also strive to become better at counseling parents on how to choose the right kind of interventions. I think there is so much quackery in the special needs industry because there are so-called experts who are exploiting the parents' vulnerabilities. I think we might be able to see a significant decrease in the unbridled use of unproven treatments if we become more effective at comforting the parents and at equipping them with a better ability to discern what is best for their children.

Kudos, Dr. Alterio, for writing courageous and persuasive articles regarding this issue.