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).

What Is Sensory Processing Disorder?

How To Diagnose Children With Sensory Issues

| Posted: 05/10/2012 2:40 pm  Updated: 05/10/2012 2:40 pm              

Written by Beth Arky.

This story is part of Speak Up for Kids, an annual public education program held during National Children's Mental Health Awareness Week (May 6-12, 2012).


        

It usually happens in the preschool years. You notice that your toddler seems to have an unusual aversion to noise or light. A teacher observes that, compared to other kids her age, your daughter is clumsy and has difficulty with fine motor skills like wielding a pencil. You've noticed that she is very, very picky about shoes, which are often deemed too tight, and clothes that are “too scratchy.”

More baffling -- and alarming -- to parents are their children’s meltdowns over things like their faces getting splashed or being dressed. Or a child might crash into walls (and people), touch everything or put inedible items, including rocks and paint, into his mouth.

These behaviors are all signs of problems with what’s known as sensory processing, found in children who have difficulty integrating information from their senses. In its extreme form, when it interferes seriously with a child's functioning, it's called Sensory Processing Disorder, or SPD, although it's not recognized by the psychiatrists' bible, the Diagnostic and Statistical Manual.

Sensory issues are associated with autism because they are common in children and adults on the autism spectrum, though most children with SPD are not on the spectrum. They can also be found in those with ADHD, OCD and other developmental delays -- or with no other diagnosis at all. In fact, a 2009 study suggests that one in every six children has sensory issues that impede their daily functioning, socialization and learning.

What parents often notice first is odd behavior and wild, inexplicable mood swings. For instance, a first-grader may do fine in a quiet setting with a calm adult. But place that child in a grocery store filled with an overload of visual and auditory stimulation and you might have the makings of an extreme meltdown.

"These kids' tantrums are so intense, so prolonged, so impossible to stop once they've started, you just can't ignore it," notes Nancy Peske, whose son Cole, now 13, was diagnosed at 3 with SPD and developmental delays. Peske is coauthor with occupational therapist Lindsey Biel, who worked with Cole, of "Raising a Sensory Smart Child."

Another response to being overwhelmed is to flee. If a child dashes out across the playground or parking lot, oblivious to the danger, Peske says that's a big red flag that he may be heading away from something upsetting, which may not be apparent to the rest of us, or toward an environment or sensation that will calm his system. This "fight-or-flight response is why someone with SPD will shut down, escape the situation quickly, or become aggressive when in sensory overload," she says. "They're actually having a neurological 'panic' response to everyday sensations the rest of us take for granted."

Children, teens and adults with SPD experience either over-sensitivity (hypersensitivity) or under-sensitivity (hyposensitivity) to an impairing or overwhelming degree. The theory behind SPD is based on the work of occupational therapist Dr. A. Jean Ayres. In the 1970s, Dr. Ayres introduced the idea that certain people's brains can't do what most people take for granted: process all the information coming in through seven -- not the traditional five -- senses to provide a clear picture of what's happening both internally and externally.

Along with touch, hearing, taste, smell and sight, Dr. Ayres added the "internal" senses of body awareness (proprioceptive) and movement (vestibular). When the brain can't synthesize all this information coming in simultaneously, "It's like a traffic jam in your head," Peske says, "with conflicting signals quickly coming from all directions, so that you don't know how to make sense of it all."

What are these two "extra" senses in Dr. Ayres' work?

Proprioceptive receptors are located in the joints and ligaments, allowing for motor control and posture. The proprioceptive system tells the brain where the body is in relation to other objects and how to move. Those who are hyposensitive crave input; they love jumping, bumping and crashing activities, as well as deep pressure such as that provided by tight bear hugs. If they're hypersensitive, they have difficulty understanding where their body is in relation to other objects and may bump into things and appear clumsy; because they have trouble sensing the amount of force they're applying, they may rip the paper when erasing, pinch too hard or slam objects down.

The vestibular receptors, located in the inner ear; tell the brain where the body is in space by providing the information related to movement and head position. These are key elements of balance and coordination, among other things. Those with hyposensitivity are in constant motion; crave fast, spinning and/or intense movement; and love being tossed in the air and jumping on furniture and trampolines. Those who are hypersensitive may be fearful of activities that require good balance, including climbing on playground equipment, riding a bike, or balancing on one foot, especially with eyes closed. They, too, may appear clumsy.

To help parents determine if their child's behavior indicates possible SPD, Peske and Biel have created a detailed sensory checklist that covers responses to all types of input, from walking barefoot to smelling objects that aren't food, as well as questions involving fine and gross motor function, such as using scissors (fine) and catching a ball (gross). The SPD Foundation also offers a litany of "red flags." The list for infants and toddlers includes a resistance to cuddling, to the point of arching away when held, which may be attributed to feeling actual pain when being touched. By preschool, over-stimulated children's anxiety may lead to frequent or long temper tantrums. Grade-schoolers who are hyposensitive may display "negative behaviors" including what looks like hyperactivity, when in fact they're seeking input.

Peske sums up the way sensory issues can affect kids this way: "If you're a child who is oversensitive to certain sensations, you are not only likely to be anxious or irritable, even angry or fearful, you're likely to be called 'picky' and 'oversensitive.' If you rush away because you're anxious or you're over-stimulated and not using your executive function well because your body has such a powerful need to get away, you're 'impulsive.' If you have trouble with planning and executing your movements due to poor body awareness and poor organization in the motor areas of the brain, you're 'clumsy.' Because you're distracted by your sensory issues and trying to make sense of it all, you may be developmentally delayed in some ways, making you a bit 'immature' or young for your age."

Amid this confusion, there may be relief for more than a few parents in recognizing what may be causing otherwise inexplicable behavior -- and in the potential for kids to get help in the form of specialized occupational therapy and what are called sensory gyms.

"When I describe sensory issues to parents whose kids have it," Peske says, "the usual reaction is 'Oh, my gosh, that's it!' They've been trying to put a finger on 'it' for many months, even years! The sense of relief that they finally know what 'it' is is humongous."

Teenagers and Sensory Issues: Special Challenges for a Special Time

http://sensorysmartparent.wordpress.com/2012/03/24/teenagers-and-sensory-issues-special-challenges-for-a-special-time/

March 24, 2012  Sensory Smart Parent Blog

As I look forward to my son entering his teens very soon, I’ve been thinking a lot about teenagers and sensory issues. Years ago, when I was first thinking about writing a practical guide for parents of kids with sensory processing disorder, I knew I wanted to cover teenagers and their sensory challenges. I knew of teens with SPD and I recognized that there was nothing out there in books or on the internet to help parents. I’m very proud to say that my coauthor, Lindsey Biel, OTR/L, and I were really at the forefront of talking about sensory issues in teens in our book.

I’m repeating here my most recent Sensory Smart News because I know how eager moms and dads, and professionals who work with teens with SPD, are to get info aimed at this particular group of kids. So here it goes:

Teens with sensory processing disorder have special challenges because of the stage of development they’re in and the fact that until now, their sensory issues may have gone unaddressed. In the award-winning book Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Processing Issues, you’ll find an entire chapter devoted to teens as well as many practical tips for older kids.

If you are unfamiliar with the special challenges of teens with sensory issues, here they are—followed by practical strategies for addressing those challenges.


1. Finding the right OT can be challenging. Few occupational therapists are trained or experienced in working with teenagers who have sensory processing disorder. Play-based SI therapy may seem silly and embarrassing to teens.

2. Poor self-esteem. Teenagers who have had sensory issues for years will have learned at least some accommodations to get around them and are less likely to experience the extreme behaviors and responses they did when they were younger. However, years of feeling different and not knowing why, and noticing that they have never been quite as mature and self-controlled as their peers, take their toll. Teens with sensory processing issues usually struggle with self-esteem. They need a lot of encouragement to admit they have sensory issues and need some help.

3. Need for independence. Teenagers need to have their independence respected, so being told, “You need to do X, Y, and Z to manage your sensory issues” usually doesn’t go over very well!

4. Desire to fit in. Even teenagers who don’t feel the need to have a lot of friends or be conformist want to have some friends they feel they fit in with. Sensory challenges can embarrass them and may make them feel isolated, and different in a negative way.

5. Changing hormones. Teenagers have ever-changing hormones that can exacerbate sensory issues by making them more sensitive to input than they were in the past. The normal changes of adolescence can also make them more moody and emotionally sensitive.

6. New expectations. People are less likely to see your teen as a young, immature person with a hidden disability and more likely to see him or her as a young adult whose behavior is willful.


What’s a parent, teacher, or therapist to do?

1. Modify traditional SI therapy techniques to be more teen friendly. As a substitute for playing with a tray of shaving cream or finger-paints, encourage the teen to cook, garden, do art or arts and crafts, and engage in other activities that challenge his tactile issues. Work with a sensory-smart occupational therapist who is willing to alter her approach to helping your teenage son or daughter to reduce any embarrassment or defensiveness.

2. Talk about sensory issues positively. Reassure your teenager that sensory issues are simply a difference in brain wiring that can have advantages but that can also be controlled and addressed to make life a little easier. See Raising a Sensory Smart Child for specific advice on helping teenagers overcome their defensiveness about having sensory processing disorder and how to talk to them about the “little tricks” you and the OT can teach them to “make their lives easier.”

3. Offer accommodations and sensory diet ideas for him or her to choose from. Present accommodations and activities to teenagers and let them decide which they would like to use. Honor and respect their choices and encourage them to engage in problem solving with you. If they don’t want to be seen doing a brushing protocol for tactile issues, can they do it discreetly in the bathroom at school? If all the kids are wearing loose clothes and they prefer them tight, can the teen wear tight clothing, such as bicycle shorts, underneath looser clothes that seem more stylish?

Teens with sensory issues need teen-friendly activities as part of their sensory diet.

4. Help him to feel okay as he is and find a group of peers he’s comfortable with. Practical solutions for grooming, picky eating, and dressing, and encouraging talks about the upside of being different, can help your teen with sensory issues feel more comfortable among his peers. However, he may also feel better about himself if he expands his group of friends. Encourage your teen to develop hobbies and engage in new activities from individualized sports that don’t require high levels of skill and competitiveness to enjoy them to groups that engage in the arts, community service, spiritual growth, etc. Extracurricular activities can help kids find their “tribe” and feel the power to make a difference in the world as well.

5. Accept that your child may be more emotionally sensitive at this stage. Be alert to signs of increased anxiety and depression and consult a medical health professional with any concerns you have. Remember, addressing sensory issues will reduce overall anxiety that can lead to mild or moderate depression (when you feel you can’t manage your discomfort, over time, you can develop depression). Don’t forget some of the most effective treatments for mild or moderate anxiety and depression include physical exercise, time spent outdoors, meditation, and breathing exercises. Mindfulness practices from yoga and tai chi to tai kwan do and karate can help, too.

6. Focus on self-awareness and accountability for self-regulating. It’s very difficult to get others to accept poor self-regulation in a teen, even if you educate them on hidden disabilities. Therefore, the sooner you collaborate with your teen in creating a workable sensory diet that prevents negative behaviors, the better. It will be easier for your teen to develop better self-regulation if she is trained in using specific self-calming and self-alerting techniques that she knows work for her. Hold her accountable for using her alerting music and gum, taking time out to sit in a quiet space and do breathing exercises or use a brushing protocol, etc. Have her participate in creating a sensory diet tailored to her needs to keep her sensory needs met and to prevent fight-or-flight behaviors. Let her experience the natural consequences if she refuses to use her calming, focusing, alerting techniques.

Above all, never forget that kids with sensory issues need a “just right” challenge, a balance of accommodations to make them more comfortable and challenges that take them out of their comfort zone. Sensory diet activities for teenagers help them to develop a higher tolerance for situations and activities they’ll encounter in life, and over time, retrain their brains to process sensory information more typically. Be creative and encouraging in setting up a sensory diet for a teenager, and always be collaborative to respect the teen’s need for independence.

Finally, if you’re a parent frustrated by trying to get your teenager’s sensory issues under control, consider joining an in-person or online support group, such as the ones on yahoogroups.com, or creating one. Knowing that you aren’t alone, and having practical and emotional support from other parents going through the same experiences with their teen, can help you enormously at this stage of your child’s development.

Check it out!

Know the symptoms of depression in teens: See the information on the Mayo Clinic website. Information on Generalized Anxiety Disorder, which often begins in adolescence, can be found at WebMD.

This video features a teenager teaching a relaxation breathing technique for reducing anxiety.
Find more quick tips for kids and teens on the Sensory Smart Parent website.

If you’d like your teen to try new activities in your community but are concerned that her hidden issues will make it difficult for her to participate and have fun, check out Lisa Jo Rudy’s book Get Out, Explore, and Have Fun!

Disneyland with Sensory Processing Disorder?

Kasting Connections recently commented on Facebook regarding a mother's question of how she should plan for a successful trip to Disneyland with her child that has Sensory Processing Disorder.  I posted these three webpages to assist her.  I would encourage a parent to read all three articles and the comments contained within because each one offers a new piece of advise.

Sensory Processing Disorder Website: SPD Kids and Amusement Parks:
http://www.sensory-processing-disorder.com/spd-kids-and-amusement-parks.html

Disneyland with Sensory Processing Disorder
http://malodorousmesses.com/2011/02/09/disneyland-with-sensory-processing-disorder/

Disney’s Guest Assistance Card for Children with Sensory Processing Disorder
http://www.sensoryprocessingintegrationdisorders.com/2011/03/disneys-guest-assistance-card-for.html

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!