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).

Chomping...Slurping...Cause for Rage?

http://www.nytimes.com/2011/09/06/health/06annoy.html?_r=2

When a Chomp or a Slurp Is a Trigger for Outrage

By JOYCE COHEN

Published: September 5, 2011

For people with a condition that some scientists call misophonia, mealtime can be torture. The sounds of other people eating — chewing, chomping, slurping, gurgling — can send them into an instantaneous, blood-boiling rage.

Or as Adah Siganoff put it, “rage, panic, fear, terror and anger, all mixed together.”

“The reaction is irrational,” said Ms. Siganoff, 52, of Alpine, Calif. “It is typical fight or flight” — so pronounced that she no longer eats with her husband.

Many people can be driven to distraction by certain small sounds that do not seem to bother others — gum chewing, footsteps, humming. But sufferers of misophonia, a newly recognized condition that remains little studied and poorly understood, take the problem to a higher level.       

They also follow a strikingly consistent pattern, experts say. The condition almost always begins in late childhood or early adolescence and worsens over time, often expanding to include more trigger sounds, usually those of eating and breathing.

“I don’t think 8- or 9-year-olds choose to wake up one morning and say, ‘Today my dad’s chewing is going to drive me insane,’ ” said Marsha Johnson, an audiologist in Portland, Ore., who runs an online forum for people with misophonia.       

But that is what happens, she said, adding, “Soon the kid doesn’t want to come to the table or go to school.”

Aage R. Moller, a neuroscientist at the University of Texas at Dallas who specializes in the auditory nervous system, included misophonia in the “Textbook of Tinnitus,” a 2010 medical guide of which he was an editor.

He believes the condition is hard-wired, like right- or left-handedness, and is probably not an auditory disorder but a “physiological abnormality” that resides in brain structures activated by processed sound.

There is “no known effective treatment,” Dr. Moller said. Patients often go from doctor to doctor, searching in vain for help.

Dr. Johnson agreed. “These people have been diagnosed with a lot of different things: phobic disorders, obsessive-compulsive disorder, bipolar, manic, anxiety disorders,” she said.

Dr. Johnson’s interest was piqued when she saw her first case in 1997. “This is not voluntary,” she said. “Usually they cry a lot because they’ve been told they can control this if they want to. This is not their fault. They didn’t ask for it and they didn’t make it up.” And as adults, they “don’t outgrow it,” she said. “They structure their lives around it.”

Taylor Benson, a 19-year-old sophomore at Creighton University in Omaha, says many mouth noises, along with sniffling and gum chewing, make her chest tighten and her heart pound. She finds herself clenching her fists and glaring at the person making the sound.

“This condition has caused me to lose friends and has caused numerous fights,” she said.

Misophonia (“dislike of sound”) is sometimes confused with hyperacusis, in which sound is perceived as abnormally loud or physically painful. But Dr. Johnson says they are not the same. “These people like sound, the louder the better,” she said of misophonia patients. “The sounds they object to are soft, hardly audible sounds.” One patient is driven crazy by her beloved dog licking its paws. Another can’t bear the pop of the plosive “p” in ordinary conversation.

When people with the disorder can’t avoid the sounds, they sometimes try earplugs to block them, or white-noise devices to mask them.

Family links are common. Ms. Siganoff suspects her father had the condition, too. “He would buy us new shoes and complain we were walking too loud,” she said.

The prevalence is unknown. Dr. Johnson’s Yahoo group, soundsensitivity, has about 1,700 members worldwide. One member, a man from Canberra, Australia, runs soundsensitivity.info, an informational site for the general public.

Meanwhile, those with the condition cope as best they can. Ms. Siganoff says she remains enraged until she says something like “shut up” or “stop it.”

“If I don’t say anything, the rage builds,” she said. “That vocalization is enough to stop the reaction.” (Echolalia, or mimicking the offensive sound, is common, Dr. Johnson said.)

As a young adolescent at the dinner table, Heidi Salerno tried to discreetly plug her ears or chew in sync with others so her own chewing noises would drown theirs out.

Doctors told her she was too controlling, said Ms. Salerno, 44, a lawyer in San Diego. “But there are many things I am not in control of, and I don’t feel rage about it,” she said. “I was always brushed off.”

Ms. Salerno shuts her office door against bothersome sounds like pen clicking. She is a champion swing dancer, and when she teaches dance she prohibits gum chewing in class, telling her students, “If you are chewing gum, I will be distracted.”       

Donna McDow, 57, a retired secretary who lives near Los Angeles, tries a different tack, telling people she has a bad headache. “Everybody understands a headache,” she said. “Nobody understands what we have.”

A version of this article appeared in print on September 6, 2011, on page D4 of the New York edition with the headline: When a Chomp or a Slurp Is a Trigger for Outrage.

Kasting Connections' Perspective:

The reactions that many of these people in the article describe, are reactions I've seen in students with auditory processing issues indicating sensory processing disorder (SPD).  SPD is not a new disorder, Dr. Jean AyresSPD in the new DSM V manual as a recognized disorder.  The following video from you tube is a brief introduction to what SPD can look like, but SPD takes many forms, being overly stimulated by sounds is one of its forms. 

http://youtu.be/QDaj4daRWJc

The following videos are Part 1 and 2 of  TV's 20-20's piece on Sensory Processing Disorder with Dr. Lucy Jane Miller. 

http://youtu.be/MFPRZznVMbU

http://youtu.be/OChhikMggtY

Some people see these behaviors as just 'behavior problems' and if the parents would just discipline the child, the behavior would disappear.  I know from experience working with SPD students that it is not the case; however, it is possible to have co-morbid conditions of behavior issues and SPD, yet is important to treat the SPD first.  When SPD is treated and more manageable, most of the behaviors just fall away; the body was in the 'fight or flight' response which brings on behaviors that to the untrained eye are just 'bratty kids' who need to be punished. 

Dr. Lucy Jane Miller's clinic, STAR Center in Denver, Colorado (http://www.starcenter.us/),  treat children with SPD with occupational therapy with a sensory integration focus and listening therapy. 

Dr. Miller and her colleagues have chosen to use Integrated Listening Systems (ILS)  (http://www.integratedlistening.com/) as their listening therapy to help retrain the brain to process incoming sensory information. 

Sheila M. Frick is another occupational therapist that works with children with SPD and uses listening therapy.  The following article: An Overview of Auditory Interventions by Sheial M. Frick, OTR/L of Vital Links  http://www.vitallinks.net/auditory.shtml summarizes the variety of listening therapies available. 

Sheila Frick is the founder of Vital Links, http://www.vitallinks.net/index.shtml, which has developed their own Therapeutic Listening® system.  The following link is a summary of research published in the American Journal of Occupational Therapy of the benefits of Therapeutic Listening®.

New Research on Therapeutic Listening®

http://www.vitallinks.net/ajotresearch.shtml

A link to purchase Sheila Frick's book, Listening with the Whole Body, which discusses how Therapeutic Listening® works is also attached.

I encourage people with misophonia to research Occupational Therapy with a sensory integration focus and listening therapy.  It will change your world!