Race and diagnosis: culture, equity and neuro-difference

This post explores how race and culture influence the journey to diagnosis and support for neurodevelopmental differences such as autism and ADHD. It looks at the origins of concepts like autism and Asperger’s, how racialised people are often under-diagnosed or misdiagnosed, and what this means for equity and inclusion in assessment. It also considers how culture shapes how neurodevelopmental differences are seen and why systemic racism within medicine continues to affect who receives help.

The origins of autism and Asperger’s

The term Asperger’s was introduced by Hans Asperger in 1944 to describe white boys in Nazi-Germany who had patterns of behaviour and focused interests, but who still faced social and communication differences. Over time, diagnostic manuals merged Asperger’s into the broader category of autism spectrum disorder.

Both autism and ADHD were defined in Western, white, racist, and middle-class contexts. The research and diagnostic tools were developed mainly in Europe and North America based on white cis men/boys. They reflect Western ideas and gendered norms about communication, behaviour, and learning rather than universal truths about human difference. This history means that current diagnostic systems carry built-in cultural bias.

Racial bias in diagnosis

Autism and ADHD

In the UK and internationally, Black and other racially marginalised children are less likely to be diagnosed with autism or ADHD. They are more likely to be described as having behavioural or conduct problems instead. This affects how they are treated in education, healthcare, and the justice system.

UK studies have shown that racialised young people wait longer for assessment and are less likely to be referred in the first place. Teachers and professionals may interpret behaviour differently depending on a child’s race or background. Families may also face stigma or discrimination when seeking help, which can delay access further.

ADHD and behaviour

Research shows that Black children in particular are under-diagnosed with ADHD and more likely to be labelled as disruptive or oppositional. This means they are punished rather than supported. The same behaviour that might be seen as a sign of ADHD in a white child may be treated as defiance in a Black child. This pattern continues into adulthood and likely contributes to the over-representation of racialised people in exclusion and criminal justice statistics. Estimates suggest that around 80 percent of people in prison in the UK show features of ADHD.

Masking, code-switching and intersectionality

Many racialised people learn early to code-switch, changing tone, language, or expression to fit into white-majority settings. This can make masking of neuro-differences even more pronounced. People who have had to adapt constantly for safety or acceptance may develop strong skills in hiding their distress or confusion. This can make autism or ADHD harder to recognise when bench-marked against white-norms.

Intersectionality means that no single factor explains a person’s experience. Race, gender, class, and neuro-difference interact to shape how someone is seen. A Black woman with ADHD, for example, may face multiple layers of bias about race, gender, and behaviour all at once.

Culture and meaning

Not every culture pathologises neuro-difference. Many view traits such as focus, energy, or emotional expressiveness as strengths. In collectivist or community-based cultures, difference may be seen as part of a social whole rather than an individual problem. This can protect against stigma and may also delay diagnosis and access to support earlier in life.

Understanding these differences matters because most screening tools are designed for Western, individualist contexts. Behaviour that seems typical or valued in one culture can appear “abnormal” in another simply because of whose norms are used as the standard.

Systemic racism and avoidance of medical systems

The medical profession has a long history of systemic racism and harm. From early psychiatry to modern research, racialised people have been excluded, misrepresented, or mistreated. For many families, avoiding medical systems is a form of self-protection. From a trauma-informed perspective, distrust of healthcare is not irrational—it is a response to lived experience.

This history contributes to the under-representation of racial diversity in both diagnosis and treatment. When people feel unsafe or unwelcome in services, they are less likely to engage. When the system rarely listens, communities build their own support networks instead.

Barriers at every stage

Barriers to fair diagnosis appear throughout the process:

• Screening tools are often normed on white populations
• Teachers and clinicians may interpret the same behaviour differently depending on race
• Structural inequality limits who can self-fund private assessments
• Advocacy requires time, language, confidence, and sometimes self-funding that not everyone is granted
• Healthcare settings are rarely culturally safe spaces

The result is a system that privileges those already trusted within it and excludes those who are not.

Bias within tools and technology

Even the tools considered “gold-standard” are not neutral. Some computerised ADHD assessments use facial-tracking or gaze-analysis software. Research by Joy Buolamwini at the MIT Media Lab found that commercial facial recognition systems were far less accurate for darker-skinned faces. This highlights how technology can reproduce racial bias within supposedly objective measures.

As an assessor, I know that the tools available are flawed. I can promise to question the tools I use, discuss them openly with you, and look for ways to make assessments more equitable and transparent.

Why representation and accountability matter

Because racialised people are less likely to be identified or supported, their perspectives are also missing from research, policy, and service design. This creates a loop where systems continue to centre white experience as the default. Increasing representation in clinical roles, research, and service leadership is vital to break that cycle.

It is also important to state clearly that both I and my supervisor are white. The frameworks we use come from traditions shaped by white, Western norms. Recognising that bias is not an apology—it is a responsibility. Our role is to question those systems, be transparent about their limits, and work with you in ways that respect your lived experience.

Moving towards equity

If you are racialised and considering assessment, know that your experiences and interpretations are valid. Cultural and racial context should never be treated as “extra information” — it is central to understanding your life. You do not have to prove your difference through someone else’s lens.

For clinicians and professionals, genuine equity means examining the assumptions built into training, language, and tools. It means co-designing assessments and supports that are safe and representative. Listening and sharing power are as important as data.

Creating an equitable diagnostic system is not about fixing individuals. It is about fixing structures that have historically excluded so many.