The Dyspraxia Enigma

Dissecting The Awareness Gap

I am dyspraxic. Moreover, I am likely one of a handful of neurodivergent Americans who identify dyspraxia as their primary neurotype.

So, what exactly is dyspraxia? I always feel like I must address this fundamental question in anything I write about my neurotype. So here goes: dyspraxia, also known as developmental coordination disorder (DCD), is a neurodivergent condition characterized by difficulties in motor skills, planning, and executive function. It affects an estimated 6% to 10% of the population but remains widely unknown and misunderstood by both medical professionals and the public alike.

First, a little history:

The first known instance of dyspraxia was likely identified in the early 1900s by British physician James Collier. He noticed that some industrial workers lost their ability to perform purposeful physical movement related to their occupation after suffering from a stroke or head injury. These cases were referred to as "acquired apraxia," and they led Collier to identify distinct categories of motor functions, such as gross motor and fine motor movements. Using these findings to inform his studies of school children, he coined the term "congenital maladroitness" to describe those who struggled with these movements from birth.

In the 1930s, American Neuropathologist Samuel T. Orton expanded on Collier's work and conducted further research on developmental difficulties with motor functioning. This research established dyspraxia as a condition present from birth and unrelated to overall intelligence. Orton referred to these cases as “congenital apraxia.”

However, there was a significant gap in research until the late 1960s, when case studies were conducted using terms like "clumsiness" to describe dyspraxic individuals. In 1972, Jean Ayres referred to it as a sensory integration disorder, and in 1975, Dr. Sasson Gubbay published "The Clumsy Child." It wasn't until the late 1980s that the term dyspraxia was officially used, and charities were created to raise awareness and support for those with the condition.

Dyspraxia: a most inscrutable neurodivergence:

This tenuous history of research can be attributed to several factors unique to dyspraxia. Its symptom presentation can vary widely between individuals and even within the same individual over their lifetime. Additionally, there is a high rate of comorbidity between dyspraxia and other neurodivergences, particularly ADD and ADHD. These factors make it challenging to conduct research and effectively identify and treat dyspraxia.

Due to the varying ways in which symptoms present, clinicians have resorted to treating individuals with dyspraxia by addressing each symptom separately. This may involve occupational therapy for motor deficits, speech therapy if speech is affected, and medication for comorbidities. As a result, there is a perception that researching this condition is unnecessary since it cannot be treated as such.

Additionally, the inconsistent terminology used by both professionals and laypeople to describe dyspraxia further hinders efforts to fundraise and support research on the condition. Over the years, dyspraxia has been referred to by various names, such as "congenital maladroitness" and "clumsy child syndrome." General research often centers around more well-known impairments that are more likely to receive greater public attention and funding.

What the UK does right:

Dyspraxia is more widely recognized and understood in the United Kingdom than in most other countries. If you Google dyspraxia, most search results will likely come from British sources.

This is due to the joint efforts between organizations like the now-defunct Dyspraxia Foundation, the country's National Health Service (NHS), and their public education system. Teachers in the UK receive more training on neurodivergences, allowing them to better recognize dyspraxia in their students. Diagnosis often occurs during school years, with British occupational therapists being legally qualified to diagnose dyspraxia. In the US, occupational therapists cannot officially diagnose DCD or dyspraxia. Additionally, in the UK, clinicians thoroughly evaluate for any other comorbidities before confirming a diagnosis. This way, a diagnostic entity like dyspraxia with such a highly variable presentation can be more readily identified. This level of public resources and support makes it more likely for individuals to get a dyspraxia diagnosis in the UK compared to the US.

However, even with these advantages, there are still many undiagnosed or late-diagnosed dyspraxic adults in the UK. There seems to be very limited funding and resources for adult neuropsychological diagnoses. While there may be more understanding and recognition of dyspraxia in the UK, people with this condition still regularly face prejudice and misunderstandings in all aspects of their lives.

When I was in the UK nearly twenty years ago, many people I met knew about dyspraxia. Yet, I would still find myself having to explain to some random stranger why I must use the elevator or “lift,” given my lack of any visibly discernible physical impairment. So, despite progress, there is still much room for improvement in the understanding and support for dyspraxia in both the UK and elsewhere.

Discovering My Dyspraxia:

I first became aware of dyspraxia at the age of thirty-two while living in the UK during the mid-2000-aughts. I was in England as an American postgrad student with a prior diagnosis of ADD, working towards an MA in Experimental Archaeology at the University of Exeter.

While conversing with one of the campus disability resource center counselors, the topic of my lifelong motor impairments came up, and she asked if I had heard of dyspraxia. It was the first time I ever heard of it, so I asked her what it was. When she described it to me, I immediately wondered if dyspraxia wouldn’t be a more fitting diagnosis for me. After all, I had never been able to drive a car due to psychomotor impairments, and I had to take occupational therapy through the school system while in grade school.

Not long after that conversation, I did my own research on dyspraxia and immediately felt I could identify more closely with it than with ADD. In fact, none of the meds that are commonly prescribed for ADD even worked for me. Dyspraxia just had to be my neurotype.

A few years after returning home to the States, I took an updated neuropsychological evaluation and was given a diagnosis of DCD and a learning disability, not otherwise specified (NOS), with slow cognitive processing speed as its main feature. This essentially is the same thing that UK clinicians colloquially call dyspraxia, as it is not an official diagnostic term.

What might improve dyspraxia awareness in the US?

In the US, I think that early recognition of dyspraxia, among other specific learning disabilities, would be greatly improved by both full federal funding of our public education system and the adoption of single-payer healthcare like what they have in Canada. In this context, awareness and understanding of dyspraxia could be more effectively elevated among the public through both campaigns and the efforts of nonprofit organizations like Dyspraxia USA. Without this type of public and private sector collaboration, campaigns to promote awareness and understanding of dyspraxia will invariably be hampered.

Stronger inclusion of dyspraxia in educational curriculums for studies in educational psychology and related courses could also be beneficial.

Aside from the inconsistent terminology used to describe dyspraxia, widespread disagreement exists as to what set of impairments it should entail. DCD is the official designation for what is often called dyspraxia and is included in both the DSM-5 and ICD-11 classificatory systems of impairment.

However, the DSM-5 only endorses the psychomotor symptoms of DCD without recognizing that cognitive impairments can also be part of it. Conversely, the ICD-11 does endorse executive dysfunction and other cognitive impairments as a part of DCD, along with motor impairments. Currently, there is some debate as to whether the DSM criteria for DCD should be revised to include the same cognitive impairments that are endorsed in the ICD-11.

I personally agree that the official DSM V criteria for DCD should be revised to include cognitive impairments that might accompany it. However, it seems at that point, they would have to rename the entity altogether. The term DCD almost implies motor impairment only. Whereas a term like dyspraxia can embody a wider set of impairments that generally impede one’s ability to practically interact with their external environment.

I think the term ‘dyspraxia’ would be a good candidate to replace DCD in both the DSM and ICD series. Consider the basic etymology of the term. The prefix dys, derived from the Greek root word, dus, meaning “bad” or “difficult”, is combined with the suffix praxis meaning “action”. Hence the term dyspraxia simply connotes a broadly impaired ability to carry out practical actions. The term itself doesn’t exclusively endorse psychomotor impairment as DCD does and is broad enough to imply that neuropsychological processes aside from motor skills may also be involved.

I think that adopting a universally agreed upon, more broadly encompassing term to describe the dyspraxia phenomenon would also go some way towards improving its status as a clinical, sociological, and social psychological entity and thus garner attention for resources directed at further research.

This is just my take on things, anyway. I am open to any thoughts one might have on the ideas I presented in this piece. Thank you for reading!