I was overwhelmed by the response to my last article, Dyspraxia: A Primer for Geeks. Hundreds of Facebook shares, a steady stream of comments and even several thoughtful and thought-provoking emails from readers.
But hidden in those comments, here on GeekDad, on the GeekDad Facebook page, and not so hidden in some of the emails, I could see a very distinct confusion over this term. In fact, I’d stumbled into something of a controversy.
I can relate. As I mentioned in one of the comments, while trying to find the best way to define dyspraxia I waded through a sea of terminology. The main gist of the confusion revolved around the complexity of the disorder and how it affects each individual in unique ways.
In my previous research I’d found a scholarly article from 2007 that argued dyspraxia should be termed “DCD” or Developmental Coordination Disorder. A Facebook commenter had mentioned much the same: that the DSM IV, the standard handbook for the classification of mental disorders, had also adopted this terminology.
I was intrigued, but plenty of organizations, including those involved with community support, continued to use dyspraxia as the terminology of choice–the same terminology we’d been given on our son’s diagnosis years ago. DCD was too limited, and I agreed. It only mentions the motor-coordination difficulties.
I then received a very thorough and detailed e-mail from a parent, Kort Duce, whose son had also been diagnosed as dyspraxic (at one time). He has a website detailing his son’s experience, Living with Finley, which I highly recommend visiting. In his e-mail, he very clearly made the case for the obsolescence of the term.
As an umbrella term, dyspraxia was too broad and confusing. For research and diagnosis, breaking it down into the components or various systems affected was not only ideal but was now the standard in professional circles. Dyspraxia as a term has persisted in places, many of them foundations and communities set up to provide outreach and awareness.
Ironically, the biggest problem, it seems, is communication.
Kort mentioned that the scientists and researchers making these decisions save their brilliance for their lab work and not public debate. They’ve struggled to communicate the changes and have grown frustrated by the resistance. But science has moved on, and for diagnostic purposes, when researching the latest scientific studies, and even reporting to most insurance companies, DCD is the accepted term. All other components of dyspraxia, apart from motor-coordination difficulties, have been categorized under other terminology, both old and new. Kort provided a thorough listing in our email exchange:
Many people with DCD will also be diagnosed with other disorders like Executive Function Disorder (EFD), Attention Deficit and Hyperactivity Disorder (ADHD), Generalized Anxiety Disorder (GAD), Sensory Processing Disorder (SPD) or Sensory Integration Disorder (SID) and learning disabilities (like Auditory Processing Disorder (APD), Dyscalculia, Dysgraphia, Dyslexia, Language Processing Disorder (LPD), Non-Verbal Leaning Disabilities (NLD) or Visual Perceptual/Visual Motor Deficit). They could also be diagnosed with delayed eye development or if speech problems exist they may be treated for apraxia of speech (AOS).
All this said, there is a fundamental problem in the way these changes have been presented, and I personally understand the resistance. It is often said that “dyspraxia is now called DCD” when sufferers know it is so much more. If the intent is to redefine the condition, a better way to go about it would be to say that dyspraxia is being broken down into its component parts.
From a treatment and research standpoint, I do agree–this makes perfect sense. However, from an emotional standpoint, it sounds much like the debate surrounding the sidelined Asperger’s terminology. People identify as dyspraxics. They find support and community in that single word, more than they would if they were stretched thin into a collection of letters.
Whatever the diagnosis in your life, I can only hope you are receiving the care and support you and your loved ones need. Increasingly, it appears this will be done without the dyspraxia label. I have mixed feelings on the subject, but, for Finley and many others, it has been the right decision.