Final Decision for DSM-V

December 3, 2012

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, 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,).

custom thesis writing service

A more comprehensive look at the research findings of the SPD Scientific Work Group will be posted later this week on our website.

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.”

[1] 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.

[1] 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.

[1] 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.

[1] 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.

[1] 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.

[1] 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.

[1] 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.

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.

Lucy Jane Miller, PhD, OTR

Clinical Director, STAR Center
Research Director, Sensory Processing Disorder Foundation

5 Responses to “Final Decision for DSM-V”

  1. Sonny says:

    This stings considering our school district is ignoring a neurological condition (spd) our little one suffers from and are now trying to insert him into a behavioral special Ed class with violent participants. They somewhat acknowledge the condition, but this almost seems to be placating in order to place erroneously. He’s struggling and things are getting more hopeless as each day passes. I fear the therapy we provide will only be undermined by forcing behavioral intervention techniques on him.

    I pride myself as being a big strong man, but I am shedding tears daily for my angel.

  2. Bridget S. says:

    I am new to this SPD my son’s Occupational Therapist said he has it. I am upset that the school is not giving him more help even when his teacher has mentioned evaluations. I am currently fighting with the school for therapies and and IEP for him. I am wondering though how to find out what states are now initiating regulations to include children with SPD in voucher programs for which children with autism are eligible?

  3. Sarah Cole, MS, OTR/L says:

    Parents, I hear your concerns and I feel for you greatly. I am an OTR working in the school system currently, however my background is in early intervention home health as well as clinical settings . . I would encourage you to go to your state’s department of education website and try to find any handouts they have published on what sensory integration may look like when provided in the schools by an OT, such as this: http://www.azed.gov/wp-content/uploads/PDF/DR40.pdf. The biggest culprit here us ignorance. It is mind boggling to me, that in my first year in the schools I literally heard OT’s tell me “too bad we can’t do any sensory treatment in schools, huh?”. WRONG. It took a two minute search of the Arizona Dept of Ed to prove them wrong, as if I even needed to do that! It is our jobs as OT’s to advocate not only for the children who need help, but for the skills we have been thoroughly trained to provide, and YES, that means in the schools as well. An OT working in your child’s school SHOULD KNOW BETTER and should work with you to get what your child needs, and may have every resource available to do so. There is always a section 504 plan available as well, that your pediatrician or home-based therapist can support you in putting in place through written documents and letters. As a parent, YOU have a lot more power in what your child receives in school than they want you to think they do . . Request an OT eval, tell them you understand that they can justify qualifying your child for OT to work on ‘learning readiness” or “self-regulation of sensory needs in order to functionally listen and participate in class”. If you are interested in my sending you a sample of a School Sensory Diet, email me at arisetherapy@gmail.com. Be well,
    Sarah

  4. Jason says:

    My family is blessed with very good health insurance. However since SPD is not in the DSM, any coverage for treatments, recommendations, even letters of medical necessity are automatically denied. It’s funny how OTs see this right away but Pediatricians do not. It’s not in the book so it “doesn’t exist”. To this day, my son’s Pediatrician has never called my son’s “condition” SPD by name. We’ve even tried to have it classified as dysgraphia and dysphrasia but no luck.

    We’ve had luck though with online public school. My son gets one on one help from my wife instead of falling through the cracks in a class with 30 kids. That’s what happened in our local school system. They also refused any evaluations, IEPs, help because he didn’t have anything to be evaluated since it is not in DSM.

  5. Laura Rini says:

    My son’s pediatrician, and therapist have suggested an occupational therapy assessment to rule out a SPD diagnosis. Our insurance has stated that they will cover OT evaluation/treatments for this diagnosis/disorder. I am interested in researching and following the progression of exposure SPD. I have yet to deal with the school in regards to this. It takes many years of research for a disorder to be recognized in the DSM; consider ADHD and PTSD. These disorders were once ‘labeled’ differently, and were not included in previous versions of the DSM; however, they are now included, and ‘recognized’ as disorders.