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Final Decision for DSM-V

Posted December 4, 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, 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.

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.

On behalf of the Sensory Processing Disorder Foundation, I want to personally thank you for taking action. We asked and you responded!
Posted June 18, 2012

Thank you for posting comments on the DSM-5 website by the June 15, 2012 deadline. We know the website’s comment posting process was complicated, but you persevered! Your emails, phone calls, Facebook postings, tweets, blogs, and other displays of public support were also great!

When I started the SPD Foundation in 1979, few people had even heard of “Sensory Processing Disorder.” Today, Sensory Processing Disorder is being talked about worldwide. The progress made over the past 35 years is phenomenal! Individuals who previously would have been misdiagnosed or told it is “all in your head” are now receiving accurate diagnosis and treatment.

We hope that SPD will be included in the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM-5) as a “Novel Diagnosis in Need of Further Research”, which would result in better worldwide recognition of the disorder and funding for additional research and treatment.

Regardless of the DSM-5 outcome, the SPD Foundation will continue on with our mission: To improve the lives of children with Sensory Processing Disorder (SPD) and their families by conducting research, educating caregivers, pediatric professionals, and educators, and empowering scientists throughout the world to study the diagnosis and treatment of SPD.

We will keep you updated regarding the status of having Sensory Processing Disorder included in DSM-5. 

Thank you again and again for your support.

Lucy Jane Miller, PhD, OTR
Founder and Executive Director
Sensory Processing Disorder Foundation

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Update on Status of DSM-5 Applications
Posted on December 21, 2010

We were recently contacted by the head of the APA committee requesting a clearer description of Sensory Processing Disorder with specific diagnostic criteria along with strong evidence that SPD exists in the absence of other mental health disorders.

We submitted new definitions and diagnostic criteria, rewritten with the consultation of a committee of experts. We also submitted studies from two of our scientific work group members, Dr. Alice Carter and Dr. Hill Goldsmith. Both have evidence showing that SPD exists in groups of children that were followed from birth. Among the children with SPD, 50%-70% did not have any other psychopathology or mental health diagnoses. This is truly groundbreaking research and a huge step forward!

Although we still dont know whether or not SPD will be recognized as a new or novel diagnosis, we believe it is quite likely, that two of the SPD subtypes (Sensory Over-Responsivity and Sensory Under-Responsivity) will be included as an associated feature of Autistic Spectrum Disorders. This will be extremely helpful in getting sensory-based services for that group of children.

Although it appears that SPD will not be included as a separate diagnosis in the 2013 edition of the DSM-5, there has been a tremendous amount of discussion about SPD and many people on the APA committees were supportive of its inclusion.

This is very positive news! We will continue to share new information as it is received.

Previous Applications
An application form along with three appendices; one in 2007, one in 2008, and one in 2009 summarizing the literature that was available at each time point suggesting that SPD (SOR and SUR) are valid syndromes. Available at this time on our website is the original application and the 2007 and 2008 Appendices.


Posted February 10, 2010

Preliminary draft revisions to the current diagnostic criteria for psychiatric diagnoses have been released for the 2013 revision of the Diagnostic and Statistical Manual (DSM-5). The DSM is the source for diagnoses of mental health disorders and many developmental disorders. The American Psychiatric Association (APA), which publishes the DSM, has also identified several disorders still under consideration for diagnostic recognition.

Sensory Processing Disorder is among the conditions still under consideration!

A final decision about recognizing any of these conditions will be made after assessment of evidence supporting their inclusion in DSM-5 is completed. This assessment includes consideration of public comments about recognizing Sensory Processing Disorder. To see the conditions proposed by outside sources still being considered for diagnostic recognition in DSM-5, .

Here's the official announcement from the American Psychiatric Association (APA), which publishes the DSM:

There are a number of conditions that are being recommended for addition to DSM-5 by outside sources, such as mental health advocacy groups, that are still under consideration by the work groups. The following conditions are considered "under review," and work groups will make a recommendation about their inclusion after further assessing the evidence.

The list that follows includes "Sensory Processing Disorder."

We know many of you are interested in Autism Spectrum Disorder and Asperger's Disorder also. Here is the official word regarding those conditions:

A single diagnostic category, "autism spectrum disorders" that will incorporate the current diagnoses of autistic disorder, Asperger's disorder, childhood disintegrative disorder, and pervasive developmental disorder (not otherwise specified).

The American Psychiatric Association provided the following explanation for the above:

The recommended DSM-5 draft criteria for autism spectrum disorders include a new assessment of symptom severity related to the individual's degree of impairment. The draft criteria also specify deficits in two categories: 1) social interaction and communication (e.g., maintaining eye-to-eye gaze, ability to sustain a conversation and peer-relations) and 2) the presence of repetitive behaviors and fixated interests and behaviors. Additionally, in recognition of the neurodevelopmental nature of the disorder, the criteria require that symptoms begin in early childhood. Clinicians must take into account an individual's age, stage of development, intellectual abilities and language level in making a diagnosis.

"The recommendation of a new category of autism spectrum disorders reflects recognition by the work group that the symptoms of these disorders represent a continuum from mild to severe, rather than being distinct disorders," said Dr. Cook. In addition to specifying a range of severity of ASD, the criteria will include description of the individual's overall development, course (e.g. regression), and language. "We expect that the proposed changes will improve the sensitivity and specificity of the criteria for autism spectrum disorders, so that clinicians may be able to more accurately diagnose these disorders."

DSM-5 initiative - summary

The American Psychiatric Association's Diagnostic and Statistical Manual, currently in its 4th edition and often called simply DSM-IV, is the standard diagnostic tool used by mental health professionals worldwide to promote reliable research, accurate diagnosis, and appropriate treatment of cognitive and mental health conditions. Currently, Sensory Processing Disorder is not included in the DSM. This absence limits awareness of SPD, contributes to the misdiagnosis and inappropriate therapeutic treatment of children, and reduces funding for research. Insurance companies often rely upon the DSM-IV diagnoses and may not cover treatment of SPD because it is not listed in the DSM.

Since 2000, the SPD Foundation has spearheaded an intense campaign for recognition of Sensory Processing Disorder in the revised DSM-5, which will be published in 2013. The SPDF has invested heavily in research and has facilitated complementary studies at premier research institutions across the country and internationally. In January 2007, the SPD Foundation submitted its first-stage application to the DSM-5 committee of the American Psychiatric Association. Because we completed or published so much additional research in 2007, we prepared and submitted a supplement to our original application in March 2008. This assured that the DSM committee members have the most current data before them as they deliberate.

In April 2008, we received a lengthy and extremely detailed letter from the chair of the DSM committee. In it, he indicated a significant number of additional studies we needed to submit before SPD could be recognized. We began those studies immediately. At the same time, we remained in close communication with the DSM committee. In June 2009, we received word that SPD is "on the list" of "novel diagnostic entities" being considered for the DSM-5. We also were informed that field trials for new diagnoses under consideration would begin in August 2009, five months earlier than we anticipated. We submitted additional requested data by that deadline.

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