Simple Summary

🔍 Some neurodivergent people have been diagnosed in a formal way with a neurodivergent condition.

🔍 Diagnosis gives a person a particular label: for example, autism, or dyslexia. Not all neurodivergent people have been formally diagnosed, but they are still neurodivergent.

🔍 There are many reasons why a person might not have been diagnosed. For instance, it could be through their personal choice, because of marginalised personal background, or it could relate to the society they live in. They may be awaiting assessment, or unable to get an assessment.

⭐ Our project welcomes all neurodivergent people, regardless of whether they have been formally diagnosed.

Benefits and Challenges of Formal Diagnosis

Some neurodivergent people have been ‘officially’ diagnosed with a neurodivergent condition, such as dyspraxia or ADHD. The formal diagnosis can be helpful for people’s self-understanding and self-identification, further decision-making, connections to relevant communities, and access to further support, particularly institutional support that often requires a formal diagnosis. A formal diagnosis can also enable neurodivergent people to access medication that they need, such as ADHD meds.

However, there are significant barriers to gaining the correct formal diagnosis, or any diagnosis at all, such as for people of colour and people whose finances do not permit them to access, travel to, and (where relevant) pay for the diagnosis. LGBTQ+ status, race, social class, citizenship status, culture, and gender all impact the access to diagnosis for neurodivergent people, the diagnosis criteria being used, and the biases they may experience during a diagnosis. We discuss some of the biases later in the toolkit (for example, in the MYTH BUSTING section).

For instance, several of our participants highlighted the gender differences in the way that different neurodivergent conditions present. Cisgender women and female-identifying individuals are often underdiagnosed or misdiagnosed, compared to a large amount of cisgender men and young boys in particular who are more commonly diagnosed in childhood (Riches & North, 2024). Gender stereotypes and biases can also lead to late-in-life diagnoses, wherein a diagnosis is not known or confirmed by the time a student enters university and therefore is ineligible to receive disability accommodations. Women with ADHD are frequently underdiagnosed, misdiagnosed, or not diagnosed until adulthood, largely because their symptoms differ from male-centred diagnostic norms (Biederman et al., 2023). As Lori Wischnewsky (2024) explains in her study of late-diagnosed ADHDer women, the impact of being diagnosed later in life should not be underestimated. There can be a huge difference between a person who has grown up with a label like ‘ADHD’ and had concomitant support and medication for this, and a person who made most of their way through graduate school with undiagnosed ADHD, unaware of precisely why they are different to those around them, and who has had to rely on their own self-created coping strategies to survive academia.

Long waiting lists (which can be more than a year) can mean that many students spend most of their time at university waiting for a diagnosis and complete their studies whilst they are still on a waiting list in Oxford, having to start the whole process again when they move to a new area. In fact, from 5th February 2024, the Oxfordshire NHS has had to pause all adult ADHD assessments, ‘due to the unprecedented number of referrals received by the Oxfordshire Adult ADHD Service which far outstrips its current capacity’ (Oxfordshire Adult ADHD Service, 2024).

Some neurodivergent people have already self-diagnosed, or to use non-diagnostic language, self-identified, before they have their diagnosis confirmed or challenged by a health professional. For example, many autistic people deduced that they were autistic for several years before they received an ‘official’ diagnosis. Some neurodivergent people choose not to engage with the diagnostic process at all, for a variety of reasons: because they feel they don’t need it to validate their neurodivergent identity, or because of previous traumatic or scary experiences with healthcare professionals, or because they want to avoid having certain diagnostic labels on their official records to avoid stigma. Repeatedly being mis-diagnosed can lead some neurodivergent people to mistrust the diagnostic process and psy-professionals in general.

Problems with the Diagnostic Process and Criteria

The diagnostic process and diagnostic criteria also face critiques. The current diagnostic criteria for autism, for example, describe autistic people in distress, and describe autistic people from the outside looking in. They focus on autistic people’s self-soothing behaviours when distressed and on autistic traits (like lack of eye contact) that are noticeable to other people. They do not describe what a calm and joyful autistic person looks like, and they can ignore autistic traits (like the joy at pursuing a special interest or the pain of intrusive thoughts) that are less visible to others but may impact the autistic person’s life much more. Diagnostic criteria and cultural understandings of neurodivergence change, often dramatically, over time. Therefore, a person diagnosed with a particular condition yesterday could have received different information from a person diagnosed with the ‘same’ condition forty years ago.

The zine You Don’t Need a Psychiatrist to Tell You You’re Autistic (Anon, 2023), which can be read in the Wellcome archives in London, lays out the argument that the psychiatric profession is in itself oppressive to neurodivergent people, and recognises that while for this reason many neurodivergent people would prefer not to engage with psychiatrists and diagnosis, the ability to choose whether or not to engage is a privilege that not everyone has. The author comments that they prefer the language of ‘self-identifying’ rather than ‘self-diagnosing’ because it avoids engaging with psychiatric frameworks, adding, ‘I didn’t self-diagnose myself as queer or trans after all’.

Our Project’s Approach

In our project, we did not require neurodivergent people to have a diagnosis to participate in our project, and we were also interested in what our participants had to say about diagnosis.

Guided by scholars such as Keon West, Dan Goodley, Robert Chapman, Margaret Price and Sarah Carr, we are aware of how institutions can use the empty rhetoric of neurodiversity inclusivity to boost their public image without actually helping neurodivergent people. Indeed, the more abundant this empty rhetoric, the more active harm may be being done to neurodivergent people. Neurodivergent people’s voices and perspectives can, in these contexts, be tokenistically included in research write-ups to give academic papers a veneer of inclusivity. Neurodivergent research participants’ lived experiences are all too often extracted and used for researchers’ and universities’ own aims, even when these do not involve helping neurodivergent people to flourish. Needless to say, we wanted to avoid replicating this kind of extractive scholarship. Throughout, we strove to collaborate meaningfully with our neurodivergent colleagues and students so that this toolkit is a product of carefully listening to our project’s participants. More in the final section of this toolkit - METHODS & ABOUT US.