Diagnosis can be a tetchy subject in neurodiversity. Diagnosis isn’t distributed fairly across gender, class, race, age or sexuality. There are implicit biases built into diagnostic criteria and questionnaires. Diagnosis is expensive and waiting lists tend to be long. Professionals argue over thresholds and the correct process to follow. Employers feel awkward about asking for diagnosis, though some facilitate it through proactive occupational health psychology practices. Individuals can experience diagnosis as catharsis, but also as the final straw to their sense of hope. Diagnosis is an essential feature of the medical model, it follows that there is a “norm” and a “divergence” from that norm, and in group and an out group. However, in a neurotypical world, diagnosis is also the key that unlocks the gate to adjustments, flexibility, accommodations that can make the difference to success and inclusion.
Beyond Diagnosis?
So from the perspective of the neurodiversity movement, diagnosis is a double-edged sword. Dr Robert Chapman, writing for Psychology Today, outlined this conundrum well. They reference the anti-psychiatry movement’s desire to erase diagnostic boundaries in favor of individual case formulation, based on presenting needs. Dr Chapman states:
“...psychiatric classifications can sometimes be epistemically harmful, especially when they are presented as brain diseases. But by wholly denying the viability of things like 'autism' or 'ADHD' as valid disability constructs that grant recognition to certain ways of functioning outside the norm, criticals end up holding a position not unlike those who purport to be ‘colour blind’ with regard to race. People who claim to be ‘colour blind’ about race tend to see the acknowledgement of race constructs as divisive, and argue that we should just accept individuals as they are regardless of race; but in doing this they end up reinforcing epistemic violence that erases the reality of race.”
In Defense Of The Medical Model
Dr Chapman also states that this is no medical value to the diagnosis of Autism in and of itself. Yet so many Autists, ADHDers and other neurodifferent (ND) communities experience overlapping medical needs at a higher rate that neurotypicals (NTs). It is highly concerning to note, for example, that Autistic people with a learning disability are forty times more likely to die prematurely than neurotypicals. So indeed, it is not the Autism that’s so dangerous, but that the co-occurrence of medical disorders is significantly higher for ND populations, for example diseases of the endocrine, nervous, circulatory, respiratory systems. Autistic people without learning disabilities are nine times more likely to die from suicide than the general population. ADHDers are more than twice as likely to die through accidents and smoking, particularly when they are untreated. Social model devotees don't like to talk about "treatment," but treatment for ADHDers can be the difference between coping and drowning, with huge consequences for families and finances.
An intention of the Neurodiversity movement is a world where neurodivergents are no longer disabled by difference, where the cognitive and sensory demands of modern living have been buffered to reduce stress, pain, anxiety and trauma and have thus reduced the medical difficulties experienced by our community. However, we are not there yet and we may never be completely there. Not everyone is privileged enough to avoid triggering environments and invest in self-care and exercise to ameliorate the dissonance of, for example, a hyperactive brain in a sedentary world. Many people have limited choices on education, career, nutrition, the housing into which they are born. Irrespective of an unaccommodating exhausting world there remains epilepsy, gastric distress, insomnia; aspects that may be biologically not socially determined and when we ignore these in favor of strengths we erase the reality of disability, as Dr Chapman rightly notes. Humans have always used medicine, there's no shame in it, and avoiding it doesn't make one NDer more needy, resilient, inferior or superior to another.
A Career Curtailed
One example of these realities is Dr Kate Knight, who is neurodivergent by at least one label (Dyslexia) and probably more, but as a Gen X woman she was likely to have been assigned “anxiety” rather than Autism or ADHD. A straight A student in STEM, she graduated with a first class degree in Applied Mathematics with Physics despite having had to switch Universities twice from Kings to Leeds to the OU as a result of her undiagnosed, unmet learning differences. She prevailed and completed a PhD in computational fluid dynamics, working with a Formula One racing team. However, at 30, having always suffered from extreme Bruxism (AKA jaw clenching/grinding), she triggered a migraine so severe that she collapsed, paralyzed down one side. After ruling out stroke, her jaw symptoms were then minimized and ignored for fourteen years. For fourteen years, Dr Knight has suffered chronic hemiplegic migraines so severe that she cannot plan to attend any event, including work. She was finally diagnosed with a dislocated jaw a few years ago, the surgeon, who performed bilateral TMJ arthroplasty, remarked that they only usually saw injuries so severe in serious accidents or boxers. However, living with continued Bruxism and a dislocated jaw for so long created forces so severe that it caused the bones of her upper palate to warp, distorting her bite and she is now unable to close her teeth together without a splint and the migraines persist. She needs $25,000 worth of orthopedic orthodontistry to slowly move the palate and teeth back into place. However, having not worked in fourteen years, this is an inaccessible amount. Dr Knight isn't disabled by neurodivergence, she is disabled by her physiological symptoms which are real and debilitating and occur at a higher prevalence in ND than NT. We need know know why. Dr Knight's case shows the urgency of genetic research into jaw disorders and muscular tension, which will then shed light on risk factors, prevention and treatment options.
Dogma Versus Pragmatics In Neuroodiversity
Bruxism is associated with ADHD and Autism, but there are few studies explicitly looking at the overlap. Touretters frequently require surgery to remediate the effects of physical tics which can cause repetitive strain, arthritis and chronic sleep deprivation. Mr Fish Lee of Tourettes Comics had to have surgery to partially paralyse his legs in order to restrict movement at night. Studies tend to exclude neurodevelopmental conditions when looking at medical intervention, to avoid “complicating” the data and so very little knowledge exists regarding the overlaps and any compound impacts for systemic diseases and ND. As a result, treatments that may work for NTs might not be as effective for NTs, symptoms may be more severe due to hypo and hypersensitivity and medics are less confident in making recommendations. Cases like Dr Knight’s limp along without resolution due to systemic sexism and ableism.
Many workplace narratives have positioned Neurodiversity as the counter to the medical model, highlighting the benefits of cognitive diversity and driving us further towards Universal Design, which is commendable. But we cannot throw the medical model baby out with the bathwater. Just as the medical model caused exclusion by pathologizing the parts of neurodivergence that are evolutionary advantages, the social model risks exclusion by ignoring the very real disablement of co-occurring conditions. We need a more pragmatic paradigm, where genetic research is focused on what would make the most difference to the day-to-day well-being of neurodivergent people, where we can understand the health impact and make ND compatible treatment options. We can do this without compromising the goals of the social model: it’s not a binary, it’s a nuanced and complex biopsychosocial model. As employers, we can reinforce this with strong occupational health provision in tandem with universal design progress. The most compelling narrative of the neurodiversity movement is the untapped talent pool, yet without medical advances and genetic research to understand debilitating physiological symptoms, we are missing talents of many neurodiverse thinkers, such as Dr Knight. In her words:
“I miss the fulfillment I got from using my mind at it’s best and the agency that work gave me in the rest of my life”
If you feel moved by this and are inspired to help, you can donate to the fundraiser for Dr Knight's treatment.
