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Parents whose children receive a diagnosis of SPD may ask themselves this initially—Steve and I did. When Jaimie was diagnosed with SPD four years ago, I’d never heard of it. I’d heard of Autism, Asperger’s and ADHD but not this mysterious SPD. In fact, I was taking a Brain and Behavior course through the University of British Columbia and my professor, Dr. John Pinel—who is a well-known and well-respected Canadian Neurologist—and, incidentally who wrote my text book for the course—hadn’t heard of it either! In an email he’d actually told me he had to “Google” SPD and visit my website to have any clue what I was asking him about. That both scared and angered me.
You see, although SPD was discovered in the late 1960s by Dr. A. Jean Ayres, and has been researched for over 35 years, there haven’t been enough massive, controlled “quantified” research to prove/disprove or predict symptoms or life course of the disorder. That’s the pulse of research: to create a theory that continues by other researchers trying to prove/disprove it. Because of the difficulty—until recently—to have variables and controls to study, there aren’t actual statistics to provide. Plus, because SPD has many symptoms that mirror other disorders (called “co-morbitity”)—such as autism, Asperger’s ADHD, to name only a few—it makes it even more difficult to create a solid controlled research environment.
According to the SPD Foundation, other reasons for the difficulties with researching SPD is that a child’s symptoms can fluctuate from one day, even one hour some days, to the next. This makes it very difficult to find a controlled environment to conduct studies and the fluctuations in symptoms also makes it hard to find solid numbers to create statistics. Additionally, SPD is considered a relatively new diagnosis so there are many people who have it—even as adults—and don’t even realize it. In fact, I am friends with a woman who always knew something was different about her but never knew why. She said her environment was a very uncomfortable and scary place for her at times growing up. Imagine her surprise to be diagnosed at age 35 with SPD! Then everything she’d gone through made sense to her.
One thing we’ve also had people say to us is that, “We all experience sensory overload at some point.” This is true. But, as you’ll see in our story, it becomes a problem, or a disorder, when that sensory overload happens frequently and impedes on a person’s ability to live their lives productively.
So, to answer the question: Yes, SPD is a real disorder. The fact the name has universally changed from “Sensory Integration Dysfunction” to “Sensory Processing Disorder” just in the last few years is a huge step. With fantastic researchers, like Dr. Lucy Miller, carrying on with Dr. A. Jean Ayres’ work that she started so many years ago, SPD will finally be included in the next revision to the DSM as a neurological disorder. This means parents will qualify for insurance coverage for treatments and our children will finally have the additional support of the medical community.
SPD is real to your child, it's real to you who helps him cope with it and it's real to those who work with your child. We just have to make the rest of the world see it too.
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