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The shocking state of autism diagnosis in the UK

Autism is under-diagnosed. This fact has been a truth within our online Autistic spaces for as long as I’ve been in them. Despite mounting evidence that many adults are struggling through life without access to formal identification, many of us face discriminatory and financially inaccessible systems that feel as though they are boxing us out of knowing ourselves. The time has come to deconstruct this debacle, this is the sad state of autism diagnosis.

What is the average age of autism diagnosis in the UK?

Trying to get am accurate number for the average age of autism diagnosis is difficult because much of the research focuses on children and young people (more on this later). As an example, Brett et al (2016) found the median age at diagnosis to be 55 months (or 5 years and 7 months). The problem with this study was that it only looked at children and young people, and approached autism using outdated subtypes.

A meta-analysis by van ‘t Hof (2020) looked more broadly and found the average age of diagnosis to have a mean age of 6 years (the ages ranged from 2.5 to 19.5 years). While this is better, it still fails to capture people who are inevitably diagnosed much later that might have changed the averages. In truth, I have struggled to find any research that provides robust findings on the average age of an autism diagnosis.

Gender and ethnicity differences for age at autism diagnosis

This was once again hampered by an overwhelming research investment into children, with very little robust data on adults. Petrou et al (2018) found that when age of diagnosis was 5 years or more, girls recieved their diagnosis later. For males and females, toileting issues and aggression were associated with earlier diagnosis. On the flip-side, having co-occuring diagnoses was associated with later diagnosis.

Three things stood out to me in the aforementioned research into gender differences among children

  • Gender was treated as a binary. This is fallacious as gender diversity exists among children and young people.
  • Toileting issues and aggression were associated with earlier diagnosis. I believe this highlights the stereotypes that exist within the diagnostic system.
  • Co-occurring diagnoses were associated with earlier diagnosis. When we consider that Autistic people tend to have multiple co-occurring diagnoses, it worries me how many of us may be denied access to our identity.

In terms of race and ethnicity, Roman-Urrestarazu et al (2021) found that while the general prevalence of autism among school age children was 1.76%, this figure increased to 2.11% for Black children. Despite this, I have struggled to find robust research into the average age of diagnosis for different ethnicities and races. Despite this increased prevalence, Tromans et al (2021) found that the identification of autism was generally lower for minority ethnic groups. This may explain the prior research’s finding that prevalence rates of autism in Roma communities is only 0.85%.

Is autism under-diagnosed?

Given the lack of good understanding around BIPOC and gender diverse experiences of autism, and the aforementioned impact of co-occurring diagnoses delaying autism diagnosis, it is reasonable to assume that autism is in fact under-diagnosed.

Under-diagnosis is most apparent when we look at age related differences in diagnosis. O’Nions et al (2023) found huge age-related disparities, with 2.94% of their co-hort aged 10-14 years having a diagnosis, compared to just 0.02% of people aged 70 or over. This same study estimated that out of a population of 56.5 million, 463,500 are diagnosed Autistic compared to a further 435,700 to 1,197,300 are undiagnosed. This means that if everyone in the UK was properly and accurately assessed, we could expect the number of autism diagnoses to rise by up to 258%.


The diagnostic environment of the UK is currently crippled by racial and gender bias, ageism, and stereotypes that lead diagnosticians to believe that autism only exists in aggressive little boys. Added on top of this is the fact that co-occurring diagnoses appear to be delaying autism diagnosis when they should, in fact, be an indicator that autism should be considered as a factor.

To my mind, this issue has arisen from dominant neuronormative narrative perpetuated by neurotypical researchers, most of whom come from a privileged Western culture. In order to level the playing field, we need to be encouraging research and diagnostic practice that is directly informed by not just Autistic people, but Autistic people from the diverse intersections that so many of us exists upon.

The UK is lauded for its universal healthcare. It’s time that the state of diagnosis in the UK reflected that.

Neurodivergence, disability, and the politics of existence

Neuroqueer theory has been the single most important idea to emerge from the academic circles of neurodiversity into my own life. I say that with a hint of irony; neurodiversity is my life. It’s all our lives. Neurodiversity is a fact of human existence. Yet, to not perform to a cultures normative standards, neurotypically, is a disability.

The cold, hard truth of being neurodivergent is that you are disabled. This doesn’t mean that there is an issue within your body that requires fixing. It doesn’t mean that you are worth less. It does mean that the world will be a harsh place.

This is particularly problematic for those who engage in neuroqueering. The further away from that pinnacle performance of neurotypicality that we get, the more labels of pathology that society will paste onto us. To diverge from normality is to have a relationship with the world that is, at best, indifferent to your pain and, at worst, violently hateful.

In my own opinion, this has to do with the way that society frames deviation from the status quo. As soon as we decondition ourselves or fail to assimilate, we are dehumanised and discriminated against. We are told that our experiences are not valid and that our pain is our own fault.

This neatly absolves the powers that be of any responsibility for the suffering they inflict on neurodivergent people. Disability (to my mind) arises not only from obstacles in the environment but also from volatile and harmful relationships within that environment.

One of the most disabling things about being neurodivergent is the way that society frames our existence.

Our existence is able to be framed as such because there is a distinct power imbalance in our world. It’s not enough to tackle ableism and autistiphobia. We must also dismantle the bigotry and oppressive system that have infected and affected our society en masse.

You can not tackle disability as an issue without tackling white supremacy, homophobia, transphobia, or any form of bigotry. We have to decolonise in order to make the world accessible. All of these forms of hatred and discrimination play a role in the way that neurodivergent people are framed by society.

This is the nature of difference. Because society has a toxic relationship with difference and diversity, we are disabled for not assimilating.

The time has come to not just queer ourselves, but queer society. By abandoning the false hierarchies created by our capitalist systems in the west, we can embrace the anarchy of bringing the fringe to the centre. We can start this in our own communities by Embracing neuro-anarchy and breaking free of the normativity within our own circles.

The first step to decolonisation is to look inwards at our own environment.

We need to consider what parts of neurodivergent culture are helpful and what parts have arisen from the politicising of our existence. We can give rise to a society that is kinder to all, a world where difference is not a disability, but the first step is to realise our own role in that oppression.

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The tin can conundrum: the problem with “labels”

Most of us have probably heard the saying by now. “Labels go on tin cans, autism is a diagnosis”. It’s true, calling autism a label is inherently invalidating. Being Autistic is an identity, a culture. As Dr. Chloe Farahar of Aucademy explains, autism itself is an abstract concept, the only thing that exists is Autistic people. So why do we feel the need to separate out and diagnose people according to the way their brain works.

After all, this is the neurodiversity movement, are we not trying to end the medicalisation of different neurocognitive styles?

Let’s consider neurotypicality. You don’t get “diagnosed” as neurotypical. This is because people with neurotypical bodyminds are able to perform their cultures neuronormative standards. They are able to assimilate into society, and therefore are generally good and obedient profit machines that don’t upset the status quo.

Neurodivergent people, however, are somewhat of a wrench in the gears. We can not perform neuronormative standards, not comfortably anyway. We require the masters house to be dismantled and rebuilt. Here’s where the conundrum comes into play.

As Dr. Nick Walker explains in her book Neuroqueer Heresies, the master will never give you the tools to dismantle their house. In this case the masters tools look like a society that disables neurodivergent people, and uses that disability to pathologise neurodivergence by locking all of the support that might improve our lives behind a medical diagnosis. That medical diagnosis, in turn, is then used as a marketing tool where by people have to pay for diagnosis (in many countries), pay for support, and in fact the “autism label” is used to wack a premium on anything that might make our lives more comfortable.

Let’s not forget that the ABA industry pulls down millions every year by selling the idea that they can “fix” your “broken” child, converting them into a person who can perform to the neurotypical standard. “Indestinguishable from their peers” has become somewhat of a motto for those who want to see autism eradicated.

So how do we break out of this conundrum?

As Dr. Walker says, we “throw away the masters tools”. We find and bring the tools necessary to dismantle a society that oppresses us. In this case, the masters tools are diagnosis and the so-called “supports” that we find locked away behind it.

It may sound radical, but we need to work towards a world where diagnosis is no longer necessary. A neurocosmopolitan society where no one neurocognitive style holds power over another. It’s radical, and sounds deceptively simple, but it isn’t.

In order for this to work, we have to dismantle the structural oppression that our current economic systems wield.

We have to understand the intersections between different minority groups.

We need to work together to create a world that doesn’t value arbitrary values over the value of human life.

This probably won’t be achieved in our lifetime, maybe not in our children’s lifetimes, but it can be achieved. We just have to take the first steps in the right direction.

A direction that takes us away from the pathologisation of different minds.

So let me end by saying this. My name is David, I’m neurodivergent. It isn’t an illness, I don’t require fixing because I am not broken. I live in a world that doesn’t fit me well by design. I refuse to accept that world, and I hope to leave a better one than the one I was born into.

Double empathy, solipsism, and neurotypicality

Why do interventions such as Applied Behavioural Analysis and Positive Behavioural Support exist? Why is it that our world uses neurotypicality as the standard from which neuronormativity is drawn?

Fundamentally, I believe that it comes down to the double empathy problem. Autistic people have a different style of communications to those with a predominant neurocognitive style in their culture. This creates a breakdown in communication, and due to the power imbalance in neuronormative culture, neurotypicality is considered superior, we are so often labelled as “disordered” or as having “deficits”.

But why is this happening? Where does this neuronormativity arise from?

I believe that to understand neuronormativity, we must first understand Solipsism. Solipsism is the belief that only the self and its experiences exist. A solipsist would believe that their experiences are the only experiences, essentially reducing others and their experiences to sub-human automations.

This is where I believe that neuronormativity arises from. A kind of strange solipsism.

In my opinion, while neurotypicals have been using ideas such as theory of mind to accuse Autistics of lacking the ability to know another’s mind, neurotypicals have been so unaware of the existence of neurodivergent experience that they will inflict pain on us to “help” us conform to their standards.

To put it another way, do most neurotypicals believe not only that their experience of the world is the “right” experience, but also the only experience of the world?

This means that when neurotypicals witness Autistic communication, they experience a kind of cognitive dissonance that results in their lashing out in the form of behavioural interventions, because they fully believe that the only way to exist is by the weird neuronormative standards that are enforced upon society.

What even is neurotypical?

That changes depending on the cultural environments, but in this sense it can be considered the predominant neurocognitive style in a given culture (Walker, 2021).

Neurotypicalilty is essentially a performance. It is a style of existing.

This effect has created a power imbalance wherein regardless of the number of neurotypicals in the room, they are still considered the gold-standard.

To me, it doesn’t seem like Autistic people are the ones needing an intervention.

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