I have been thinking about neurodivergence a lot. I’ve read a number of great writers on the subject of neurodiversity and it’s really informed the way I think about the need and use of diagnosis of Autism, ADHD, and other neurodivergent experiences.

At some point, I’m going to write about my own conception of neurodivergent culture. I’ve done some work on my view of the ways in which neurodivergent culture is separate to mainstream culture from a clinical perspective, with a view to helping people find counsellors and psychotherapists who are knowledgeable, accepting, and affirming of their experiences and I’d like to put that into writing. But first, I’d like to talk about my thoughts on diagnosis.

Diagnosis vs self-id

There’s been an evolving discourse in neurodivergent circles over the years. I remember when I first started looking for neurodivergent community about 8 years ago, an official diagnosis was the ticket required for access to many neurodivergent circles. That has been changing over the years. These days, self-identification is seen as valid in the vast majority of neurodivergent spaces, and in some cases is thought of as a radical act of reclaiming one’s experiences from the sexist, racist, assessments that are poorly designed for adults. I personally agree that self-identification as neurodivergent is more than enough to seek out neurodivergent spaces and seek out accommodations if you need them, but not everyone in positions of authority agrees with me.

The main reason for my acceptance of neurodivergent self-identification is my scepticism about the way that neurodivergence is classified as disordered. For two of the most commonly discussed neurodivergent experiences–autism and ADHD–I view these are artificially created categories that describe variations in human experience, behaviour and sensory processing. This classification can either be for the purposes of helping people understand themselves and seek appropriate support, or for mark them out as failed people incapable of participating in society, depending on your particular philosophical perspective. Often, it’s a bit of both.

I come at things from a particularly critical (as in critical thinking rather than automatically attaching negative connotations) viewpoint. My perspectives are based on the history of what is now broadly termed neurodivergence emerging alongside economic and social changes in the past 350 years or so. The way we understand health and ill-health has shifted alongside the way we organise work, and how work has shaped the way that society is organised.

The history of “disorder”

I learned a lot about classifying and categorising mental ‘disorders’ from Micha Frazer-Carroll’s Mad World. The book critiques psychiatry from the perspective of how pathologising neuro-psychological difference and mental ill-health has been used to subdue unruly populations. Many of the ways that these diagnoses are both created and applied are based in racism and sexism. While aspects of psychiatric care can be helpful for people, I believe we can and should still interrogate how psychiatry acts as an institution that holds power over people’s lives and bodily autonomy. This includes the issuing of diagnoses that restrict liberty to people against their will, and refusal to offer support on the basis of failure to perform ‘illness’ to the standards required by the system.

I also found it helpful to learn more about how the concept of normal or ‘typical’ (and in this case, neurotypical) was created by reading Robert Chapman’s Empire of Normality. Rene Descartes’ proposition of dualism between body and mind shifted of the social understanding of health. In Descartes’ time, a state of health was seen as something that arose from a balance within a person, or between the person and their environment. Cartesian mechanism was Descartes’ theory that all things in nature, including human bodies, are biological machines that can be seen as either working or broken. That fitted very well with the need to understand how to make people fit into a more industrialised society.

With Cartesian mechanism well-established as a way of understanding human health, the influence of men like statistician Adolphe Quetelet (creator of the BMI, amongst other things) and eugenicist Francis Galton deepened the belief of humans as more or less normal. Their work moved general understanding of the human condition from one of broad variation to one of proximity to or distance from a statistically determined mean that was determined to be ‘normal’ and therefore healthy.

What makes a diagnosis?

Reading scientific literature makes it clear that there are observable differences in the way that particularly autistic people’s brains and nervous systems are organised. These differences have been observed using fMRI and post-mortem dissection of autistic people’s brains , as well as studies of differences in gut microbiota in autistic people. .While we are as yet unclear if the correlation between differences in microbiota are correlative or causative (i.e. if autism makes your gut flora different, or gut flora changes how neurodevelopment happens in autistic people), there is already a small industry growing up around using this knowledge to try to ‘cure’ autistic children.

However, even though we know those physiological and other observable differences exist for autistic people, none of these things are used to diagnose autism. Like most stuff to do with the brain and how it creates behaviour and personal experience, our society isn’t looking at physiology or biochemistry to make a diagnosis of autism or ADHD like you would if you were diagnosing an iron deficiency or an infection.

The DISCO assessment for autism, now considered to be the standard for assessments in the UK, focuses on “impairments in social interaction social communication, and social imagination together with…associated repetitive behaviours.” The assessment centres on the external presentation of autism as observed by an assessor and reported by the person’s caregivers in childhood. I have previously somewhat sardonically described autism assessment as an evaluation of how much of a pain in the arse you for the neurotypical people forced to interact with you. I’ve said that because there seems to be little in the assessment process that focuses on the autistic person’s experience of themselves and what they personally struggle with.

The same is true to some extent with ADHD, which focuses on the person being assessed interrupting people, forgetting appointments, needing other people to prompt them and finish tasks for them, and disrupting others by fidgeting and finishing other people’s sentences. Most ADHDers and autistic people I speak to have a hard time managing sensory sensitivities and sensory processing and regulating their own emotions, but those things aren’t the focus of assessment.

Beyond diagnosis

For people asking about whether or not to seek diagnosis, my view is that it that comes down to what you want to do with that information. If you’re trying to work out what you’re experiencing, how to manage in your day-to-day life, and how to help yourself and those around you to be less infuriated when you’re doing something that inconveniences them or seems weird, then having an assessor assign a relatively arbitrary category of ADHD or Autism isn’t actually that important. You’re allowed to use words that might provide a shorthand for others to understand you better, even if you weren’t given permission by a professional. Sometimes it can be enough to look at these situations as conflicts in behavioural and sensory needs that sometimes clash in explosive ways, and finding ways to navigate those for yourself and with those around you.

If what you’re looking for is formal support from school, work, or other sources, it can be helpful to get a diagnosis you can share with agencies who are more likely to believe a psychologist or psychiatrist than an individual. There are all kinds of reasons why diagnosis might be required–social expectations of normativity and perceptions of ‘laziness,’ individualisation of responsibility for disability, lack of resources to provide adjustments and accommodations for people unless they can ‘prove’ they deserve them–but knowing those reasons exist means you may want to have a formal diagnosis to fall back on to get what you need to thrive.

But even if the person who assesses you chooses one label, such as ADHD, and leaves out others like Autism, Auditory Processing Disorder, Dyspraxia etc. in the Official Diagnosis, it doesn’t stop you from using other language if it helps you understand yourself and explain or negotiate with those around you. If your diagnosis says Autism, and you experience difficulty focusing on or initiating tasks, you can describe that to others as an ADHD thing if it helps succinctly communicate with other people.

I see the language of neurodiversity as the equivalent to a buffet table. You can help yourself to whatever words work for you and leave what you don’t like. You don’t have to confine yourself to the sausage rolls just because a person you’ve only just met told you that you’re the sausage roll guy now. This is your plate. You can fill it with whatever fits.