Medical Mystery Surrounding Highly-Sensitive Kids ... Solved?
You have a gut feeling that something's wrong with your child: He's often cranky, confused, overwhelmed, fatigued. At times you suspect a rare illness -- maybe autism or ADD? But his pediatrician gives him a clean bill of health, and his teacher says those other labels don't quite fit. Neurodevelopment expert Roya Ostovar may have the answer.
Her book, "The Ultimate Guide to Sensory Processing Disorder," introduces the little-known developmental condition. Children with the disorder cannot properly process stimuli received through the senses. Because sensory processing disorder is just now gaining wider recognition outside specialized clinical circles, it can be difficult to diagnose and, therefore, treat. Not only does "The Ultimate Guide" thoroughly explain the condition and offer many real case examples, it lists detailed, situation-specific strategies for children and their families that can produce life-changing results.
ParentDish spoke with Ostovar, a psychiatry instructor at Harvard Medical School and the director of the famous McLean Hospital's Center for Neurodevelopmental Services, to find out more about sensory processing disorder. An edited version of the interview follows.
ParentDish: Let's start by talking about what the sensory processing system is. We're all familiar with the five senses -- sight, hearing, touch, smell and taste -- but there's more to it than that, right?
Roya Ostovar: Yes, there are actually two additional senses: The sense of balance and coordinated movement (the vestibular system), and the positioning sense (the properioceptive system). We're more aware of the vestibular sense when we have an inner ear infection and feel dizzy. The properioceptive system receives its information from our muscles and joints. It lets us know where we are in space and helps us move effortlessly and smoothly.
PD: Sensory processing disorder is a complex condition. Do you have a quickie definition you offer parents who have never heard of it before?
RO: I tell people that SPD distorts and over-exaggerates the way a child receives, registers and reacts to everyday sensory information. Anything that their senses take in from the environment can become misinterpreted by their brain and therefore experienced differently from how you or I would feel it. In a nutshell, it makes the world overwhelming.
PD: Some readers will think, "Oh, here's another diagnosis for problem kids who just need structure and discipline." How do you respond to that?
RO: I totally understand their puzzlement, but SPD is a real disorder. It's equivalent to having chronic stress, something that we all can relate to. As you know, stress can take a big toll on your body. It puts us in fight or flight mode: You feel hyper-vigilant and alert all the time. Which is exhausting!
SPD impacts every area of a child's functioning at home, in school and beyond, such as learning, socializing and being able to fully participate in everyday life. What's at stake here is improving the lives of children so that they can function at their best.
PD: Parents may be impatient with children dealing with sensory processing disorder, feeling that they should just suck it up and deal. Why is that not a good idea?
RO: SPD is a developmental disorder, and it is biologically based. Like any other medical condition, one cannot just try harder to get rid of it. It needs to be treated correctly and effectively by qualified professionals. If a parent puts the responsibility on their child to deal with this condition alone, that child is sure to fail.
The emotional and psychological implications of failing repeatedly and on a daily basis, despite one's best efforts, are devastating. In fact, I recommend the opposite approach. Youngsters must be educated and empowered about their condition, and learn adaptive ways of dealing with the symptoms of SPD.
RO: It is more important and helpful to think about the degree to which a child's day-to-day functioning is affected by these symptoms than to count the number of symptoms. It's true that many of the symptoms of SPD are universal, but kids without SPD can live a normal life and go about their day without their sensitivities getting in the way.
The key here is that for little ones with SPD, the symptoms pass a threshold and cause impairment in various areas of functioning. This, by the way, is true of most medical and psychiatric disorders. We have to consider the frequency, the intensity and the level of impairment that the symptoms cause. For example, while we all feel sad from time to time, it isn't considered depression until the symptoms have passed a certain threshold.
PD: In the book, you note that sensory processing disorder can develop after illness. How common is that?
RO: Anything that compromises the nervous system of a child can affect how he/she takes in sensory information. You might see SPD in children with significant prenatal risks, such as:
- A mother's drug/alcohol use during pregnancy
- Major medical complications during pregnancy
- Trauma during birth, such as lack of oxygen
- And/or significant postnatal factors, such as institutionalization for long periods of times. Also, those who have had trauma, injury, surgery or suffer from substantial neglect and/or abuse.
RO: Not really, though it may appear that they do. As children grow, they learn ways of coping with this condition and try to work around it. The main coping mechanism is avoidance, meaning they try to anticipate, based on previous experience, what a given place or event may feel like for their sensory system and avoid those activities, places and events. Adolescents and adults with this condition have figured out how to adapt and have developed strategies to make the world less overwhelming.
PD: The good news is that sensory processing disorder is treatable. What are the success rates you've seen?
RO: Yes, SPD is highly treatable. Clinical research shows that occupational therapy, and specifically sensory integration therapy, is very effective. It's surprisingly inexpensive, as well. Children and adolescents who have undergone treatment have seen great improvements in their learning abilities, socialization skills, attention and concentration.
PD: Your book provides detailed "cheat sheets" on how to manage children's stress in various situations like the grocery store, a sporting event or a birthday party. Can some families handle a child's mild sensory processing disorder without the help of an official diagnosis or expert intervention?
RO: The book does provide a wealth of practical solutions to sensory challenges. But an official diagnosis is helpful in many ways. It provides validation for the individual and the family -- that what they've been experiencing is real, has a name and can be treated.
Getting an assessment and diagnosis also links the family to a professional, typically an occupational therapist. The OT develops an individualized treatment plan for the child, known as a "sensory diet." The idea is similar to a nutritional diet, but this program recommends toys and activities that benefit the child in specific ways. Lastly, with an official diagnosis, a child can receive OT services through their school district and receive special accommodations in the classroom.
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