Dyspraxia: Not Without Controversy

Education
Living with Finley-Photography by Kort Duce-000088
Finley receiving eye therapy. Photo courtesy Kort Duce, from his site Living with Finley

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.

Photo courtesy Kort Duce, from his site Living with Finley
Photo courtesy Kort Duce, from his site Living with Finley

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.

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19 thoughts on “Dyspraxia: Not Without Controversy

  1. I like your take on it that it’s breaking down the umbrella term into it’s various components. But it’s still good to have an umbrella term, and recognize that not everyone has all of the components.

  2. Thanks. I agree despite the fact that I can see the clinical benefits of the changes. There is enough overlap and similarity that people need to be able to identify with each other using that single term. A dyspraxic could easily have three to four of these disorders in one degree or another and it seems difficult in a community outreach perspective to break down things into say the seven or more different groups.

  3. I am the President and Founder of Dyspraxia USA. DCD is a motor based condition impacting Fine and Gross Motor Skill Development. Dyspraxia impacts Ocular Motor, Oral Motor, Memory, Judgment, Processing, Function, Senses, Language and for the top 2% of severity the Globally impacted child or adult Speech as well. I am working with large organizations around the world to clarify the differences between DCD and Dyspraxia and how the sub components of the disorder look like other pieces for example processing and function delays is memory conversions not ADHD which has medication, and how everything is obsessive to show interests and store memory does not mean we have OCD and need medication. This is very specific diagnosed by a well respected Neuro Psychologist. The dad above does not grasp the condition even though I have tried and the NCLD and Understood is working with me and bringing in experts to clarify the true disorder and DCD vs Dyspraxia. This video will clarify, Warren.

    1. Thank you for adding your insight and experience! I would like to say I did further research and found plenty of evidence to back up Mr. Duce’s claims regarding the reclassification of Dyspraxia so I don’t think it is a lack of understanding on his part, simply a different view of how to approach the disorder. I do think your work is necessary and that we need to find common ground on treatment. I also agree that, from my own experience, many of the cognitive difficulties I’ve observed in my Dyspraxic son would often be mislabeled as ADD but are in fact something else entirely, so trying to classify each component could have drawbacks.

  4. Its not a reclassification that is the concern. Its the fact the WHO ICD 10 F82 includes both DCD and Dyspraxia and the DSM which rung me to explain and I did and I educated the DOE/Special Education Programme is the fact Clinicians are not trained on the disorder a small subset of Neuropsychologist are starting to bring the pieces together created by the WHO ICD 10 F82 indicates both DCD and Dyspraxia its 2 separate issues and further more an Ocular Motor Task can look like Fine motor I.E. tying shoes but it can be Ocular a different therapy and support for the child, teen or adult with the disorder its wrong information being presented. I am working with the NCLD and Understood and there top Neuropsychologist to clarify the correct information.

  5. I think its very important as we go forward for those learning about the disorder to have a grasp of the differences.

    Dyspraxia may affect any or all areas of development – physical, intellectual, emotional, social, language, and sensory – and may impair the normal process of learning, thus is a learning difficulty. It is not a unitary disorder (like measles or chicken pox, where all those affected share a common set of symptoms), and affects each person in different ways at different ages and stages of development, and to different degrees. It is inconsistent, in that it may affect the child one day but not the next – as if sometimes information is ‘put away in the wrong drawer’ – and it may affect children in different ways at different ages and developmental stages.
    It is a hidden handicap as, under normal circumstances, children with Dyspraxia may appear no different from their peers, until new skills are tried or known ones taken out of context, when difficulties may become apparent. In many affected children, Dyspraxia occurs with or as part of other neurological conditions. (Dyspraxia New Zealand)

    Meaning the Dyspraxia is a condition within itself with the concerns of Ocular Motor, Memory, Judgment, processing, function, senses, language and Global Dyspraxia includes speech. The child with the Global Dyspraxia Piece unlike the child or adult with Developmental Dyspraxia will not show a large discrepancy of verbal and visual as the verbal is almost impacted were the child or adult with Developmental Dyspraxia will struggle with language and use of words. (Dyspraxia Foundation USA)

    “The term DCD describes a more generalised motor co-ordination difficulty which shows a marked difference between the levels of skills that would be expected for age or level of intelegence and significantly interferes with academic or activities of daily living.

    Not all people with DCD have dyspraxia,
    “Dyspraxia Foundation” (UK)

  6. Warren Fried, I believe it is imperative for researchers and clinicians worldwide to share their scientific findings.

    Who is the neuropsychologist you are referring to? How about the other experts that NCLD is bringing in to clarify dyspraxia? I would like to know the names of the experts and researchers of dyspraxia that you refer to. I believe other researchers and clinicians worldwide would also like to know so they can further their own research.

    I can not speak for professor Amanda Kirby (a general practitioner, parent of child with DCD, advocate, director and researcher and a person that you and Dyspraxia Foundation UK refer to as a “key figure” on dyspraxia), but I believe her perception of dyspraxia has changed and she now refers to this neurological disorder as DCD.

    In fact, she is the keynote speaker at the DCD-11 international conference this summer in Toulouse, France, from July 2-4, 2015. She is also the chairperson of the coalition Movement Matters UK that, from my understanding, is the voice for the Dyspraxia Foundation UK.

    This coalition has endorsed the term DCD and a definition using the DSM-IV (now the DSM-V), which is used internationally to diagnose mental disorders. They understand that the term dyspraxia is still used by laypeople because it has been used for so long to describe this motor difficulty, yet it frustrates them that people turn blind eyes and deaf eyes to their scientific research and consensus.

    German speaking nations through the European Academy of Childhood Disability (EACD) endorsed the term DCD and agreed on a definition similar to Movement Matters UK using the ICD-9 (now the ICD-10).

    There is not a consensus in the scientific community on the findings you present about dyspraxia.

    In November 2006 the Archives of Disease in Childhood, an international peer-reviewed journal for health professionals and researchers covering conception to adolescence, published an article titled Dyspraxia or developmental coordination disorder? Unravelling the enigma. Dr. John Gibbs writes “although there is broad agreement that dyspraxia involves a disorder of movement coordination, there is no consensus on a more precise definition.” And to paraphrase even more he writes “DCD is a term preferred by many allied health professionals to describe children with coordination problems that are developmental in origin.”

    Dr. Gibbs continues with “A survey of health and educational professionals showed widespread uncertainty about the definitions of, and distinction between, DCD and dyspraxia. Furthermore, the rationale for using one or the other term in the literature has been unclear. Therefore, DCD and dyspraxia should be regarded as synonymous. It is clearly helpful for professionals and parents to adopt a single term when describing these children to avoid confusion and to facilitate a consistent understanding of approaches to management and research.”

    Professor John Cairney at McMaster University in Hamilton, Ontario, Canada, specializes in Developmental Coordination Disorder in children and just published a book titled Developmental Coordination Disorder and Its Consequences.

    I would like to hear what professor John Cairney, an expert on DCD/dyspraxia, has to say on this topic. Also, I would like to hear from professor Amanda Kirby. Their input would be valuable to this discussion.

  7. I appreciate the lively debate, Kort and Warren. It illustrates the gaps I found when I did my own research. I did look up what Amanda Kirby had to say regarding Dyspraxia and she essentially states it was one and the same as DCD. (She went on to discuss only the fine and gross motor control problems but acknowledged that the term Dyspraxia was used very broadly in the UK.) I also found varying definitions on many of the dyspraxia community sites worldwide, so I’m positive we have yet to find a consensus. If anyone would like to post links in the comments to help educate readers, please feel free. I don’t think we can solve the debate here, but educating others about the overall problems associated is perhaps a good idea. Thanks!

  8. F82 is actually a Specific Developmental Disorder of Motor Function

    Clinical Information
    A disorder characterized by an impairment in the development of an individual’s motor coordination skills; this impairment in motor development is not due to a medical condition.
    Marked impairments in the development of motor coordination such that the impairment interferes with activities of daily living. (from dsm-iv, 1994)
    Applicable To
    Clumsy child syndrome
    Developmental coordination disorder
    Developmental dyspraxia

    Description Synonyms
    Clumsiness
    Clumsiness -motor delay
    Clumsiness, motor delay
    Developmental delay, gross motor
    Gross motor development delay
    Motor delay
    Neuromuscular disorder, clumsiness

    I don’t think we want to fight for the term clumsy child to continued to be used.

  9. Here is another really nice article explaining Developmental Coordination Disorder and the history of the terms used to classify and describe it. The article also explains co-occuring diagnoses like childhood apraxia of speech (icd9 784.69 which will become R48.2 in the ICD10), adhd, autstim, etc… The article continues on to explain how DCD is diagnosed and the possible causes for it. It concludes with a brief overview of types of treatment. This article was written by a neurologist. http://www.theravive.com/therapedia/Developmental-Coordination-Disorder-DSM–5-315.4-(F82)

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