Sensory Processing and the DSM-V: Final Decision

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. 5420 South Quebec Street, Suite 135 | Greenwood Village, CO 80111 US | (303) 794-1182

Parents of Children Labeled as Disruptive in School Find Help at STAR Center

School can be a challenging time for children with Sensory Processing Disorder (SPD). STAR Center helps parents uncover underlying neurological issues for their children struggling with behavior problems and poor social skills at school. 

 Denver, Colo. (PRWEB) November 15, 2012 

by Janice Roetenberg 

303-726-3232

Recognizing the signs of Sensory Processing Disorder – from meltdowns to picky eating

 

Submitted by Guest Blogger on October 16, 2012 – 6:55 am

Mile High Mamas

 

   

Loud. Bright. Stinky. Getting instant information from the senses is part of everyday life. But for children who cannot correctly process this information, simple tasks can become overwhelming.
October is National Sensory Awareness Month.



The Sensory Processing Disorder (SPD) Foundation wants parents to know the Red Flags of SPD:

• Overly sensitive to touch, noises, smells, or movement
• Floppy or stiff body, clumsy, poor motor skills or handwriting
• Difficulty dressing, eating, sleeping, or toilet training
• Frequent or lengthy temper tantrums
• Easily distracted, fidgety, withdrawn, or aggressive
• Craves movement
• Easily overwhelmed

SPD affects 5-10% of all children, yet often goes undiagnosed or misdiagnosed. Most children with SPD are just as intelligent as their peers, and many are intellectually gifted. Not all children are affected the same way. One child with SPD may over-respond to sensation, and find clothing and certain foods unbearable. Another might under-respond and show no reaction to pain, while yet another might have coordination problems.



The STAR Center in the Denver Tech Center is the premier clinic for assessment and treatment of SPD, attracting families from around the world. Treatment typically involves occupational therapy, which enables children to participate in the normal activities of childhood, such as playing with friends, enjoying school, eating, dressing, and sleeping. Depending on the child’s symptoms, feeding programs or listening therapy might also be recommended.

To kick off National Sensory Awareness Month events in Denver, the STAR Center celebrated the grand opening of its new sensory playground with a concert and activities for children. The unique playground provides a fun environment for children to improve balance, muscle strength, coordination and social skills.

The next event, “For the Love of Children Near and Far – Gala and Auction” will be held on October 19 at Glenmoor Country Club. For tickets, visit SPDFoundation.net/gala.


Ellie’s Story

Ellie was diagnosed with SPD when she was four. Her mother, Tiffany, was encouraged to read Sensational Kids, by Dr. Lucy Jane Miller, founder of SPD Foundation and STAR Center, which led the family to STAR.

“Prior to coming to STAR, we lived our lives on eggshells,” said Tiffany. “We never knew when or what was going to make Ellie meltdown. From the time she was born, if she was awake, she was crying. She was sent to the director’s office at school every day because of meltdowns in class, sometimes several times a day, and each one could last up to an hour. We fought with her at every mealtime. She would not eat or sit at the dinner table.”

What is life like after the family completed four weeks of intensive treatment for SPD? “Our life has changed pretty dramatically,” said Tiffany. “We have learned to look for cues from Ellie and educated Ellie’s teachers on SPD. We are seeing a huge decrease in meltdowns at home and at school. Our relationships within the family are improving as well. Now that my husband and I understand what is going on, we stopped blaming each other for the way Ellie acts. Overall, we feel better educated to keep her environment as supportive as possible so she can succeed.”

To learn more about SPD and STAR Center, visit SPDNow.org or call 303-221-STAR (7827).

New Study Supports Subtypes of Sensory Modulation Disorder

The Sensory Processing Blog

James, K. Miller, L.J., Schaaf, R, Nielsen, D. M. & Schoen, S. A. (2011). Phenotypes within sensory modulation dysfunction. Comprehensive Psychiatry, 52, 715-724.

This study partially supports the new taxonomy proposed by Miller and colleagues (2007). Two of the three Sensory Processing Disorder subtypes were identified in a sample of 94 children. These children were clinically diagnosed by occupational therapists as having Sensory Modulation Disorder (SMD).

• Sensory Seeking/Craving (SC) which was characterized by the following:
  • Hyperactivity, impulsivity, delinquent and/or aggressive behaviors, poor socialization, inability to adapt, and impaired cognitive and/or social behavior.
• Sensory Under-Responsivity (SUR) which was characterized by:
  • Movement sensitivity, emotional withdrawal, low energy and/or weak muscles, fatigue, poor balance and motor control. These behaviors may occur because children with SUR tend to avoid activities that challenge their balance and motor coordination.

Although Sensory Over-Responsivity (SOR), which is characterized with adverse responses to touch, visual, taste, sound, and smell stimuli, did not cluster as a separate subtype, it was present in both Sensory Craving and Sensory Under-Responsivity.

 

The results of this study are different from previous hypotheses about the relationship between Sensory Under-Responsivity and Sensory Craving as well as the relationship between Sensory Under-Responsivity and Sensory Over-Responsivity. Unlike Winnie Dunn’s model, the individuals in this study with Sensory Craving did not have Under-Responsivity in the proprioceptive and vestibular domains. In addition, this study did not find that Sensory Under-Responsivity and Sensory Over-Responsivity were on a continuum as suggested in other writings. Rather, Sensory Under-Responsivity and Movement Over-Responsivity co-occurred in this sample.

 

Additionally, a high percentage of our sample displayed behaviors characteristic of ADHD and similarly a high percentage of children who met criteria for ADHD were reported to have SMD. Specifically, 75% of the children with SMD had significant sensory craving and hyperactivity while 82% or the children with ADHD had sensory modulation difficulties. Therefore, therapists and parents are advised to evaluate children for both SMD and ADHD in order to obtain the appropriate and effective interventions. For example, children with SMD tend to become calmer with sensory activities, while children with ADHD may become more hyperactive and disorganized with the same activities.

 

This research supports the finding that children with ADHD are a heterogeneous group and may present with multiple characteristics of SMD. For example, children with ADHD often have features of sensory craving as well as sensory over-responsivity. Given the likelihood of overlapping symptoms occurring in these disorders, it is important for clinicians to have tools to better differentiate them. In the future, we hope to have measures of direct performance to better differentiate clinical disorders from sensory modulation subtypes.

 

Click on the link to read the entire article: http://www.spdfoundation.net/pdf/James,%20et%20al%202011%20Phenotypes%20within%20sensory%20modulationdysfunction_final.pdf