EXPERT ADVICE:

Sensory Processing Disorder

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 An interview with Lucy Jane Miller, MD and Sarah Schoen, PhD, OTR

Do you have to cut the tag out of all your kid’s shirts?  Intense reactions to sight, sound, smell, and touch. Some kids are super sensitive, but sometimes it’s more than that.  Sensory Processing Disorder is a condition commonly associated with autism, but some kids that aren’t autistic experience it, too. In fact, researchers say it affects 1 out of 6 children in varying degrees of acuteness. Doctors Lucy Jane Miller and Sarah Schoen from the Sensory Processing Disorder Foundation share their expertise, enlightening us all on this common condition. — Laurel Moglen, Web Managing Editor

What percentage of American children have SPD?

Research has found that 5-10% of the American child population has SPD. One study (Ahn, Miller, Milberger, McIntosh, 2004) shows that at least 1 in 20 children’s daily lives is affected by SPD. Another research study by the Sensory Processing Disorder Scientific Work Group (Ben-Sasson, Carter, Briggs-Gowen, 2009) suggests that 1 in every 6 children experiences sensory symptoms that may be significant enough to affect aspects of everyday life functions.

Symptoms of Sensory Processing Disorder, like those of most disorders, occur within a broad spectrum of severity. While most of us have occasional difficulties processing sensory information, for children and adults with SPD, these difficulties are chronic, and they disrupt everyday life.

What is it like to have SPD?

Sensory Processing Disorder is a rather complex condition that manifests in a multitude of ways. Mostly we see the behaviors not the sensory reactions. So that a child who does not like touch may have meltdowns every day before school when putting on their clothes. It isn’t usually evident to family members that their child’s behavior has a sensory basis. And even when the clothes finally get on their body, their child may be distracted all day at school because they never habituate to the feeling of the pants on their legs or the sleeves of their shirt.

Difficulties in processing everyday sensory stimuli may produce a range of problems including any or all of the following: motor clumsiness, behavioral problems, anxiety, depression, school failure or social isolation. Frequently children with Sensory Processing Disorder are misunderstood, misdiagnosed and unfairly disciplined because their actions are interpreted as “bad” behavior rather than a neurophysiological problem.

Are there such subtle cases of SPD, that it’s hard to detect in a child?

We are all sensory beings and each of us present with unique idiosyncrasies regarding our experience of the sensory world. With that said, many individuals present with what we might label as extreme sensory needs that could be labeled SPD but rather they have found a way to adapt their daily life to satisfy those sensory needs. For example, I cut out all the labels in my clothes, I never wear wool and I don’t attend loud concerts. I take yoga classes weekly and avoid large gatherings. Do I have SPD…? Maybe, but we try not to label children with a condition unless it is significantly interferes with their every daily life. That is the criteria that should be used to define a disorder.

Do most kids with autism have SPD?

The surprising finding is that most children with autism have SPD as well. In fact, the research shows that 80- 90% of children on the autism spectrum have sensory symptoms. This makes differential diagnosis challenging because in cases where the SPD is severe, the child may be misdiagnosed with autism. With these children, we find early, intensive intervention can completely change the presentation of their symptoms and subsequent label.

Is the condition of SPD on the autism spectrum?

Yes, that’s a very good question. SPD should be considered a spectrum disorder in the same way that autism is described. There is definitely a broad range of how symptoms manifest in different children. There are cases in which the presentation of symptoms are broad, across multiple sensory systems impacting every aspect of daily life to those in which the sensory symptoms are restricted to a single sensory domain with less significant interference with daily life. For example, some children are just over-responsive to sound, thus limiting their participation in certain events such as going to large gatherings, eating in the cafeteria, playing in the gymnasium or attending a movie. While other children are not only over-responsive to sound but also touch, but may have difficulty sitting still and attending to class, due to an insatiable desire to move, their motor skills may be awkward and they have a restricted repertoire of play skills and thus are unable to establish meaningful peer relationships.

How is it most effectively treated?The most effective treatment for children with Sensory Processing Disorder is Occupational Therapy. We advocate for an intensive treatment model such as the one offered at the Sensory Therapy And Research (STAR) Center which offers a multidisciplinary, research-based occupational therapy program that incorporates relationship-based and sensory-based strategies with the context of extensive parent education and parent support services.

Occupational therapy for children with SPD typically takes place in a sensory-rich environment sometimes called the “OT gym.” During OT sessions, the therapist guides the child through fun activities that are subtly structured so the child is constantly challenged but always successful.

The goal of Occupational Therapy is to foster appropriate responses to sensation in an active, meaningful, and fun way so the child is able to behave in a more functional manner. Over time, the appropriate responses generalize to the environment beyond the clinic including home, school, and the larger community. Effective occupational therapy thus enables children with SPD to take part in the normal activities of childhood, such as playing with friends, enjoying school, eating, dressing, and sleeping.

The Sensory Processing Disorder Foundation published results of the first randomized controlled study examining the effectiveness of occupational therapy for children with SPD (Miller, et. al. 2007). In this preliminary study, we compared three treatment conditions: occupational therapy with a sensory-based approach, an activity protocol, and no treatment. Occupational therapy with a sensory-based approach was significantly more effective than the other treatment conditions. Specifically it was reported that after occupational therapy with a sensory-integration approach children had better attainment of desired treatment goals, increased attention, and increased social behaviors.

Since that time, over 1,000 children have participated in the STAR Center’s updated and enhanced intensive program and we have impressive preliminary findings that suggest children show significant changes in self-regulation, social participation, self-confidence and self-esteem and school performance. Additionally there is data to suggest that children who have gone through the STAR Center occupational therapy program demonstrate brain wave activity that appears to look more like that seen in typically developing children.

Is it a life-long condition or otherwise?

Because our brains are plastic, e.g. changeable, throughout our lives, SPD does not have to be a life-long challenge. Occupational therapy is an effective intervention for changing the way a child organizes and interprets sensory information from their daily environments. This, in combination with creating a new “sensory lifestyle” that incorporates activities that addressed one’s unique sensory idiosyncrasies means leading a productive, happy life.

Lucy Jane Miller, MD founded the Sensory Processing Disorder Foundation in 1979, serving as its executive director since then. For the past 35 years, she has devoted herself to the study and treatment of Sensory Processing Disorder. She is a prolific author, with over 50 articles in peer-reviewed journals. Her book, Sensational Kids: Hope and Help for Children with Sensory Processing Disorder (SPD) has become the definitive source of information on SPD. Dr. Miller’s most recent book, No Longer A SECRET: Unique Common Sense Strategies for Children with Sensory or Motor Challenges offers on-the-spot problem-solving tips to use for children with sensory issues.

Sarah Schoen, PhD, OTR, is Associate Director of Research at the Sensory Processing Disorder Foundation. Dr. Schoen is an Occupational Therapist with 28 years of clinical experience and a doctorate in Occupational Therapy from New York University (2001). Dr. Schoen has advanced training in Sensory Integration Therapy and clinical expertise with infants/toddlers with Regulatory Disorder, children with Sensory Processing Disorder, Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder.

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Posted in: Expert Advice, Learn, Special Needs

Comments (9)

  1. Corrine

    Such a wonderful article thank you for it!

    Reply

  2. April

    I am 32 with autism and loud noises are still physically painful and I have to cut my tags out too. I swear sometimes I can see sounds. I smell EVERYTHING. Wonderful article on SPD and how it affects us. Thank you.

    Reply

    • Annie Thome

      Ainsley is now 11 years old with ADHD, Sensory Processing Disorder and Asperger’s. I am so very worried, because in 1 week she will start middle school with 6 teachers, 6 classrooms with 6 different seating positions, kids talking, laughing and moving in the hallway, lights flickering, etc. Tell me what the next 4 – 6 years of school will be like?

      Thanks,

      Reply

  3. Rebecca Goniwich

    Hi April,

    You are right this is a great article on SPD.
    I just wanted to comment on your comment that loud noises are still physically painful. The Star Center uses Integrated Listening Systems (iLs) to help with sound sensitives. You can buy a home unit from them and they can coach you to use it at home.

    I have used iLs both professionally and with my own children. Two of my children had sound sensitives and by using iLs they no longer have that issue or have the need to cover their ears.

    Wishing you all the bestm
    Rebecca

    Reply

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