Getting Sensible About Sensory Processing Disorder
The†American Academy of Pediatrics has issued a†statement saying that sensory processing disorder (SPD) — a condition in which children have unusual sensory sensitivities that affect their everyday functioning and much else — should not be a diagnosed condition in and of itself. The AAP does acknowledge that sensory integration therapies can be helpful to children with diagnoses such as autism spectrum disorders, ADHD/ADD and others.
My teenage son Charlie is autistic and there has not been a need to press for a particular diagnosis of sensory processing disorder. Still, a thorough understanding of sensory processing issues and of sensory integrative therapies has been very helpful in understanding some of his puzzling behaviors (sniffing people’s hands after shaking them).
Understanding Sensory Processing Disorder in a Child
We used to take Charlie†into New York almost every weekend. My husband Jim teaches there and Charlie and I would take the PATH train and then the subway up to Columbus Circle. Midtown Manhattan is always bustling with people and taxis and life; with sights, noises, smells. It is what you could call a sensory assault — and that is precisely why those trips to NYC have become a thing of the past for Charlie, due to his highly over-sensitive sensory system that causes him to hear, smell, feel and even see things with extreme intensity and acuity.
Charlie has super-sensitive hearing and puts his hands over his ears when he hears an airplane high above our heads. He has what seems to be (we can never know many of these things for sure as Charlie is only minimally verbal) a photographic memory certainly for places and people. He has a keen sense of smell (hence, the palm-sniffing). We also suspect that he has synesthesia in which (for example) numbers and letters are experienced as having particular colors or textures (there is a fascinating description of this in Daniel Tammet’s book Born On a Blue Day).
We weren’t aware that Charlie had these sensory issues until he was about 6 years ago. I think he always had them but simply wasn’t as aware himself plus we too had to become more aware of sensory processing disorder. We know that Charlie has a full panoply of unusual responses to sensory stimuli be they tastes, textures (of food and clothes — no wool sweaters, no buttons, thank you), sounds (motorcyclists revving their engines and the clang of metal on metal are visibly painful to him) and even sights (he much prefers to have things lined up in neat little groupings throughout our house). This knowledge has helped to understand why Charlie balks at walking into most stores due to the fluorescent lighting and is overwhelmed at the sight of row on row of food items in supermarkets: It is just too much.
There are therapies, often provided in school settings as part of special education services, for sensory processing issues. Sensory integration therapy is provided by occupational therapists who often use a small arsenal of equipment from swings (that gentle motion is comforting; do you remembering swinging on a swingset?); weighted blankets, vests and other items (on the theory that such can help to settle a “disordered” sensory system); special brushes.
There are many more products and my son has used many though, frankly, these have been less helpful to soothe him than some of his own devising (he has a large fleece blanket that he likes to wrap himself in; he used to, when younger, love to crouch at the bottom of the pool, to feel the weight of the water on his body; he often presses his hands over his ears to block out or modulate sound). Our understanding that his sensory system is “overloaded” and that he is trying to “process” something has perhaps been the most beneficial. Just last night, he was crying, writing and yelling in pain while feeling a massive change in the barometric pressure, as a storm moved in that would lower hot and humid 93 degree weather to something more seasonable for late May (i.e., late spring).
I have even thought that Charlie’s sensory issues are behind his difficulties in going to new and unfamiliar places, to traveling and having to encounter and realign himself with an entirely different sensory system, so to speak.
Doctors Wary of Diagnosing Sensory Processing Disorder
Many doctors have been wary to support sensory therapies due to a lack of scientific evidence though this†1982 study and this one from 2008 do provide some support. But evidence and studies aside, sensory issues are the kind of thing a parent may suspect and a child can be really feeling; being attuned to such can make a huge difference. As†Dr. Claudia M. Gold writes in the Boston Globe,†sensory processing is closely connected to our emotions and our managing of them — something that children, certainly, are very much figuring out and yet unable to articulate in words:
Sensory processing is intimately tied to emotional regulation, and our †ability to manage ourselves in a complex social environment.†The world may feel soft and inviting, or harsh and dangerous. In taking detailed histories from families of children with a range of behavioral and emotional problems, I have found that there is almost always some problem of sensory processing, often from birth.
Gold indeed suggests that understanding about sensory processing may be most important:
I wonder if we should we abandon altogether the search for a “disorder,” and instead focus on understanding a child’s experience of the world and helping him to make sense of and manage that experience. As I have said many times on this blog and in my book,†Keeping Your Child in Mind, children do well when the people who care for them understand them, and can see the world from their point of view. If we stay focused on this task, then a label with a “disorder” becomes necessary only †for the insurance company.
Therein lies the rub: Without a formal diagnosis, parents cannot get insurance coverage for occupational therapy for a child. They may also not be able to get OT through a school district and may have to seek out an additional and separate diagnosis, such as ADHD.
Parents wanting to help their kids can’t wait for researchers to carry out the next study to prove that this or that therapy is effective. More understanding that sensory issues are real and are truly experienced is just a start, but a good first step.
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