Dear friends and colleagues,
I am writing to let you know that Sensory Processing Disorder (SPD) was indeed excluded from the fifth edition of the DSM (Diagnostic and Statistical Manual) as announced Saturday by the American Psychiatric Association.
Yet, sad as we all are, there are reasons still to celebrate.
In reporting the news on the DSM-5, Bloomberg News specifically pointed out that Sensory Processing Disorder was excluded, which is progress as 15, even 10 years, ago many people had not heard of SPD (http://www.bloomberg.com/news/2012-12-02/psychiatrists-redefine-disorders-including-autism.html).
Our website, www.spdfoundation.net receives an average of 85,000 hits each day from individuals seeking information about this disorder, which shows how much information about the disorder is sought and needed. And although we are excluded even from the category of a diagnosis that needs further research, the challenges impacting our children live on and so do our families. Their needs are real and the importance of services is now magnified.
When we first decided to try to get accepted into the DSM it was the year 2000. Little rigorous research was available about SPD. The decision to apply for DSM status was a springboard to research action. In 1995, the Wallace Research Foundation (WRF) found and funded me to study the sympathetic nervous system functioning of children with SPD. With the success of that project (see Miller et al., 1999 and McIntosh et al, 1999) the WRF began an initiative to study Sensory Processing Disorder that has extended for this whole period from 2000 when we decided to try for DSM inclusion and continues today with multiple studies being conducted.
To ensure rigor in the design of funded projects, many Principal Investigators with extensive NIH-funded research backgrounds are funded by the Wallace Research Foundation projects. The researchers have formed a consortium, the SPD Scientific Work Group, with 49 members so far, representing renowned institutions such as Harvard, Yale, Duke, MIT, U of WI-Madison, UC San Francisco and many others. And this year we will begin work on a collaborative data base so that our members can share research findings more easily and work together using existing data.
Notably, none of the members of the Scientific Work Group are members of any of the DSM committees. We focused only on science believing that research would be the entry ticket to the DSM. [Parenthetically, I was brought up in a very political household where my father ran against Gary Hart for US senate (remember Bimini and the yacht Monkey Business?). So you’d think I’d have known that all major social decisions are in essence political.] But a small foundation like ours cannot do everything. So we decided in the year 2000 to focus on rigorous research.
And the Scientific Work Group has produced dozens of articles since then with more on the way. Together we have researched the prevalence of the disorder (Ben-Sasson, et al., 2009), the validity of the diagnosis (Davies, et al., 2007), and the underlying neurological foundations (Schoen, Miller, et al., 2009; Brett-Green, Miller, et al., 2008, 2010). The 2007 RCT demonstrated the effectiveness of OT with children who have SPD, in achieving individualized parent priorities as well as other key outcomes compared to both a passive and an active placebo. (Miller, Coll, and Schoen, 2007).
A more comprehensive look at the research findings of the SPD Scientific Work Group will be posted later this week on our web site at http://www.spdfoundation.net/research.html
So now what? Now we regroup and then we charge forward. Already we have been contacted by states that are initiating regulations to include children with SPD in voucher programs for which children with autism are eligible. Already we have been contacted by news media for our response to the DSM-5 announcement. Already we know that we won’t just give up!
We have made a difference. And we are not done yet. We will continue our SPD research efforts at the Foundation, with the WRF and with the SPD Scientific Work Group. We will reevaluate our strategies going forward regarding advocacy initiatives. We will continue our education and awareness of SPD to give hope and help to those impacted by SPD. As Margaret Mead said, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.”
We will keep you appraised about our future direction and what you can do to get involved. Thank you all for your support and action on behalf of families living with SPD.
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Lucy Jane Miller, PhD, OTR
Clinical Director, STAR Center
Research Director, Sensory Processing Disorder Foundation
Miller, L. J., McIntosh, D. N., McGrath, J., Shyu, V., Lampe, M., Taylor, A. K., Tassone, F.,
Neitzel, K., Stackhouse, T., & Hagerman, R. (1999). Electrodermal responses to sensory stimuli
in individuals with fragile X syndrome: A preliminary report. American Journal of Medical
Genetics, 83(4), 268-279.
McIntosh, D.N., Miller, L.J., Shyu, V., & Hagerman, R. (1999). Sensory-modulation disruption, electrodermal responses, and functional behaviors. Developmental Medicine and Child Neurology, 41, 608-615.
Ben-Sasson, A., Carter, A.S., & Briggs-Gowan, M.J. (2009). Sensory Over-Responsivity in Elementary School: Prevalence and Social-Emotional Correlates. Journal of Abnormal Child Psychology, doi 10.1007/s10802-008-9295-8.
Davies, P. L., & Gavin, W. J. (2007). Validating the diagnosis of sensory processing disorders using EEG technology. American Journal of Occupational Therapy, 61, 176–189.
Schoen, S. A., Miller, L.J., Brett-Green, B., Nielsen, D.M. (2009) Physiological and behavioral differences in sensory processing: a comparison of children with Autism Spectrum Disorder and Sensory Modulation Disorder. Frontiers in Integrative Neuroscience 3, 29: 1-11.
Brett-Green, B. A., Miller, L. J., Gavin, W. J., Davies, P. l. (2008). Multisensory Integration in Children: A Preliminary ERP study, Brain Research, 1242, 283-290.
Brett-Green, B., Miller, L.J., Schoen, S. A., Nielsen, D.M., (2010). An Exploratory Event Related Potential Study of Multisensory Integration in Sensory Over-Responsive Children. Brain Research, doi:10.1016/j.brainres.2010.01.043.
Miller, L.J., Coll, J.R., Schoen, S.A. (2007a). A randomized controlled pilot study of the effectiveness of occupational therapy for children with sensory modulation disorder. American Journal of Occupational Therapy, 61:228-238.
Miller, L. J., Schoen, S. A., James, K., & Schaaf, R. C. (2007b). Lessons learned: A pilot study on occupational therapy effectiveness for children with sensory modulation disorder. The American Journal of Occupational Therapy, 61 (2), 161-169.
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