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
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:
Small but rigorous study finds sensory integration therapy improves daily function in children w/ autism. #OTResearch http://t.co/FdMqx7rtza
— Susan Lin (@SusanAOTA) December 17, 2013
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.