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Autism and ADHD diagnosis and the problem with cultural competency among diagnostic professionals

It’s no secret that diagnosis in the UK (and, in fact, the world at large) is increasingly difficult to access. I have written at length about diagnosis, such as this article on why getting a diagnosis is so difficult, and this piece considering the issues with current diagnostic criteria. Whichever way you look at the current situation, it’s pretty dire.

Currently, there are around 700,000 Autistic people with 122,000 people with am open referral for diagnosis between July 2021 and June 2022. In terms of ADHD, it is estimated that a total of 2.6 million people meet the diagnostic criteria. Autistic children are waiting up to five years for an appointment, with many adults having to go down the private route to obtain a diagnosis. The situation is not any better in terms of ADHD with people waiting (again) up to five years for assessment.

The problem, however, is more complicated than just waiting times. Assuming you can get a referral in the first place, many professionals have very rigid and stereotypical views on how autism and ADHD present in individuals. At this point, I feel it necessary to mention the long-held and deeply inaccurate belief that these diagnoses belong to little boys. This is a view that has been perpetuated by biased research and misinformed media offerings.

This culminates in a culture within which Autistic and ADHD individuals are misdiagnosed or rejected from the diagnostic process for not fitting the diagnostic criteria written in the DSM and interpreted by the diagnostician.

What we are talking about here is a lack of cultural competency. Specifically, we are talking about the concept of neurodivergence competency as conceptualised by Tanya Adkin and written about by the both of us. As you will see from the above linked article, it is not enough to be “neurodiversity affirming”, one needs to have the foundational knowledge and nuanced perspective provided by engagement with the community in question.

This is what is missing. Professionals who diagnose autism and ADHD rarely have cultural experience. In my opinion, if your job is to identify neurodivergence, you should be active in the communities to whom that identity applies. It is not enough to have studied medicine and read some relevant sections of a textbook. To understand what autism and ADHD look like in day-to-day life, professionals need to understand our culture.

This allows a person to see how ideas such as monotropism and the double empathy problem practically apply to neurodivergent lives. It allows them to have a practical understanding of how we mask and camouflage our neurodivergence. It presents the opportunity to engage with the power structures that oppress us and understand the numerous ways we are traumatised and how that might present.

It seems non-sensical that after years of waiting for a formal diagnosis, a person might be turned away on a technicality. When a lack of cultural competency stands between a person and a validation of their identity, something is fundamentally broken. People deserve access to and validation of who they are. Gatekeeping it behind services that are oversubscribed, underfunded, and that have no post-diagnostic support to offer is perhaps one of the most unethical things that a branch of medicine can do.

In truth, requiring a diagnosis fundamentally undermines the neurodiversity movement, but the current world is yet to move beyond such diagnostic models. Until such time that diagnostic professionals engage with the communities they exist to serve, there will be a significant power imbalance, and Autistic and ADHD people will be the ones paying with their lives and wellbeing.

BBC Panorama is having their ethics called into question following the ADHD diagnoses expose

The other day, I wrote a response to this article about how such irresponsible reporting puts ADHD and otherwise neurodivergent people at risk. Since then there has been growing concern about the ethics behind the article and associated BBC Panorama documentary.

The first thing to note is this article written by the NHS consultant front Leeds who disproved the diagnosis of the three private diagnosticians in question. In the article, the doctor details how the situation being reported on is created by a history of underdiagnosis coupled with a lack of ring-fence NHS funding for ADHD services.

They comment on the fact that the Panorama documentary risks bolestering the arguments of people who falsely believe ADHD is overdiagnosed or that it isn’t a real diagnosis. I believe this is a very measured response to what is a massive failure by the BBC to ensure they meet good journalism standards.

However, there is more to this situation than improper reporting. A whistle-blower on Twitter believes that the reporter in question may have used a fake account to gain access to a female only space regarding ADHD in order to create the documentary and associated article.

The tweet is by Emily Mckenize on Twitter and details some concerning behaviour from the reporter behind this scandal:

Twitter thread by Emily Mckenzie

In particular I would like to highlight the end of the thread:

End of thread by Emily Mckenzie

This highlights a significant breach of boundaries and trust. This reporter appears to have posed as a woman to gain access to a female only space and then solicited information under false pretences. Is that not a flagrant disregard for journalistic ethics and integrity?

One thing is clear from this situation. The journalist, and perhaps the BBC themselves, had decided on the narrative they wanted to portray before actually investigating. They were willing to behave unethically and mislead vulnerable people in order to abuse a position of trust, just to sell this story.

They didn’t care what harm they were doing. They didn’t care that they were focusing on the wrong aspects of ADHD diagnoses. To make it worse, they have taken a space that felt safe for many vulnerable people and made them feel unsafe. This is not okay.

The BBC and the team at Panorama need to be held to account. The impact that this has had on a vulnerable community is unacceptable and highlights the ongoing ableism and uncontrolled privilege existing within the media. I would ask that everyone make a formal complaint to the BBC and request that they make reparations for the damage they have done.

Neurodivergent people deserve safety and support, not subterfuge and invalidation of their identity.

The BBC needs to do better.

BBC’s ADHD private diagnosis scandal is the perfect example of irresponsible reporting

By now, you’re probably aware that the BBC is positioning itself as a whistle-blower in a scandal regarding the misdiagnosis of ADHD by private psychiatrists. While I am reticent to say that it doesn’t happen (of course it does, humans are awfully inexact creatures and psychiatry barely qualifies as a science), there are wider ramifications for this article that could go on to cause a great deal more harm than those at the centre of it can realise.

Service wait times for adult ADHD assessments are at an all-time high. Despite an NHS Constitution that states patients have right to access treatment within 18 weeks of a GP referral, some people are waiting in excess of 13 months. It isn’t surprising then that of the estimates over 1 million ADHD’ers in the UK, less than 10% are diagnosed (see link above).

All of this creates a tricky choice for those with the privilege of being able to access private assessment; continue to struggle unsupported, or pay to get your diagnosis privately.

Let’s step back for a moment and consider some issues that are pervasive across both NHS and private services. Psychiatry doesn’t just uphold the medical model of disability, they played a big role in creating it. The neurodiversity movement stands diametrically opposed to this pathologising of our existence. You won’t find neurodiversity affirmation all that common in any area of psychiatry, let alone cultural competence.

So, now we have an environment in which people are so desperate to get support that they will be willing to part with hundreds or even thousands of pounds fkr the privilege of being boxed into a pathological worldview in order to access said support.

Did I mention there isn’t really much support for ADHD beyond maybe getting ADHD medication?

Quite frankly, the diagnostic process is a nightmare. Very few professionals have a good grasp on neurodivergent experience and culture, and their diagnostic criteria are often restrictive and biased. The problem is not that diagnosis is too easy to obtain. If anything, it should be easier.

So when I see articles like the one the BBC has published, it turns my stomach to think of the effect it might have on an already broken system. Responsible reporters would not publish a piece like this in the manner that they have. What people will take away from it is that private ADHD diagnosis is a scam. It will justify the invalidation of many people’s diagnosis while simultaneously trapping those seeking diagnosis; should we choose between NHS waiting times and misdiagnosis or pay for a diagnosis that we might not receive and that no one will take seriously?

The deeper part of the problem is that people die because they don’t have the right diagnosis. If the BBC wanted to report on a diagnostic scandal, they could have chosen the complete lack of competency and up-to-date knowledge in those denying people diagnoses based on outdated stereotypes. Instead, they have risked erasing people.

With all of the pressures that exist for undiagnosed neurodivergent people, we should be helping them access support, not taking a blow torch to the already very thin ice they are standing on.

Reclaiming Neurofuturism: An introduction

In some of my recent articles, I have referred to something called neurofuturism. While neurofuturism itself is not a new word (although weirdly, I didn’t know this when I first used it), I do believe that reconceptualising it may allow for a new discourse in the Neurodivergent community. Namely, a discourse around what the future of the neurodiversity movement and paradigm might look like.

With this in mind, let’s start by considering the original use of neurofuturism and take a look at it through a critical lens.

A lot of the discussion around neurofuturism thus far has looked at augmenting human cognition with technology up to, and including, artificial intelligence. This sounds exciting on the surface; fusing the human mind with technology as a way of unlocking our potential. It sounds exciting, but there are two main issues at the forefront of my mind

  • Technology is not universally accessible.
  • Technology can often be created with one purpose while incidentally fulfilling another.

Consider this, technology allowed us to split the atom. Fission reactors meant that we could create huge quantities of carbon neutral energy. It also meant that we were able to create nuclear weapons, fundamentally changing the nature of human conflict. As I mentioned, technology is not universally accessible. It often requires privilege to gain a seat at the table when it comes to research and design. Because of this, it is likely that people creating technology to go on your head either may not consider negative impacts on marginalised communities, or worse, may use it to actively oppress them.

Remember when Elon Musk claimed that neural interfaces could ‘solve’ autism and schizophrenia? We never asked for that, but it’s reasonable to worry that such a technology could be forced upon is if it were to exist.

So, why am I even talking about neurofuturism?

Neurofuturism has a place in human discourse, but it isn’t with the tech world. I firmly believe we should reclaim neurofuturism and reconceptualise it into something accessible and beneficial to all. What better place for such a concept to exist than within the neurodiversity paradigm?

Broadly speaking, neurofuturism as I conceptualise it has existed for some time. Neuroqueer theory could be considered somewhat of a flagship of neurofuturism. The idea that we can queer our identity and embodiment in line with our neurology is liberational, and that is what neurofuturism should be, a school of thought that emancipates us from the chains of the past.

In my mind, neurofuturism is a word to describe ideas that ask us to not blindly accept the knowledge of the past. It is a school of thought that asks us to take a degree of criticality to everything that has been taken for granted, including the ideas that the neurodiversity movement takes for granted.

Consider the ever-present threat of identity politics. We see it everywhere, and the neurodivergent community is not free of this threat. Much of the politics surrounding how people identify and what the embodiment of that identity should look like is based on some form of normative thinking. It’s necessary to consider the uncomfortable truth that even the neurodivergent community has its own normative ideas.

Wherever there is community, there is a status quo.

Thus, neurofuturism can be reclaimed as a way of advancing the community through criticality. This critical thought can be used to surgically cut through the chains of “normality”, shedding the excess so that we can walk unburdened into the future of our community.

This comes with a lot of uncomfortable thinking. It raises questions about objective truth and the social construction of everything from language to our own sense of Self.

Neurofuturism is not a ‘natural kind’. It does not exist without people observing its growth and trajectory. Moreover, it cannot exist without accepting certain truths, chiefly;

  • Human thought and experience should not be pathologised. It recognises that our psychological world is not a matter for medical intervention.
  • Where people experience psychological distress, we must look to their environment and the experiences it has afforded them.
  • That if human experience is not a medical matter, then such branches of medicine such as psychiatry must use social change as a means of support, with medicine being a tool rather than a requirement.

These points to me seem as the necessary first ideas to acknowledge in a neurofuturist approach to neurodiversity.

There is much more to be said on the nature of neurofuturism, and I hope that as this blog series progresses, we can explore what the future can look like together. I hope we can use the reclamation of this concept as a way of accommodating all Neurodivergent people, and not just the select few with the privilege of being platformed in the right places.

Autism and ADHD: The myth of co-occurring conditions

It’s a very poorly kept secret that many people who are given a diagnosis of autism also meet the criteria for a diagnosis of ADHD. One could be forgiven for assuming this means that people who meet the criteria for both (often termed AuDHD) have two co-occurring conditions. Unfortunately, nothing in life is simple, and the actual answer to this situation is far more complex.

Co-occurring disorders refer to two separate conditions that are occurring at the same time. For example, one might be both asthmatic and diabetic simultaneously. I have chosen this particular example because I want to explore the disconnect between physical health and psychiatric diagnoses.

Diagnosis is a two part system. Step one is research. Clusters of symptoms are matched up to biological signs (known as biomarkers). Where a meaningful relationship can be found between symptoms and biomarkers, you have a disorder. In psychiatry, however, it does not go this smoothly. We can identify clusters of symptoms, usually behaviour or thoughts and feelings that have been deemed troublesome or pathological by those with the privilege of not being oppressed. The problem comes when we try to find a meaningful link with biomarkers.

Despite decades of research, we are not any closer to finding a quantifiable difference in the human body. The research that does exist has been largely inconclusive.

So here’s where autism and ADHD come in. Many of us meet the criteria for both diagnoses. This is because diagnostic manuals specify lists of traits, and if you meet enough of them, you get diagnosed. The problem is that much like pseudoscientific personality tests, humans don’t fit neatly into categories. The criteria for many diagnoses overlap and mic together.

The point I’m trying to make is that AuDHD’ers do not have two conditions simultaneously. In fact, according to the neurodivesity paradigm, there is nothing medically quantifiable. Humans have individual sets of traits that are diverse and interlinked. Remember the saying “if you’ve met one Autistic person, you’ve met one Autistic person”?

That’s because autism doesn’t actually exist. It’s not a physical abnormality, it has no presence. Autistic people exist, and being Autistic is an identity based on shared culture and language. So, what is far more likely is that Autistic and ADHD people are more likely to share particular clusters of traits. You don’t have two conditions, your particular flavour of diversity just happens to tick the right boxes for both.

One could argue that this means a separate diagnosis should be created for people who meet both criteria or that classification should be changed to have them listed as part of a shared spectrum. The problem is that current diagnostic models are unreliable and prone to mistakes. We often find our diagnosis changing from doctor to doctor.

This isn’t necessarily because doctors are bad at their job. It’s because we are trying to pathologise human experience and identity. You can’t measure psychiatric conditions with a blood test, doctors know this, and they’ve been trying to do it for many years. This means that not just diagnosis, but the criteria themselves are at the whim of individuals. Experts and professionals bring their own individual biases to the table, and each one will interpret traits differently.

This is why it’s important that we move towards a demedicalised approach to neurodiversity. We need to stop assigning people fixed identities through diagnosis and instead explore the very real fact that everything about us, including our neurology, changes with time.

People should be allowed to explore their identity and try on whatever labels they feel are right for them.

If this has intrigued you I highly recommend the Neuroqueer series that I co-author with Katie Munday and the interview I recently has with Dr. Nick Walker for my podcast.

Neurodivergence and Normality: The meaning of words

“I understand now that boundaries between noise and sound are conventions. All boundaries are conventions, waiting to be transcended. One may transcend any convention if only one can first conceive of doing so.”

Cloud Atlas by David Mitchell

The neurodiversity movement is predicated on three deceptively simple ideas:

  • There are as many variations of the human mind as there are humans.
  • Those who can not perform to neurotypical standards are neurodivergent.
  • Neurodivergent people deserve equity and inclusion in our shared environment.

Upon this premise, an entire collective culture of shared knowledge and community-connectedness has blossomed. Creating spaces where neurodivergent people have, for the first time, felt they belong. For many of us, including myself, it has been not just life-changing. It has saved us from an early demise.

But what is neurotypicality? What is it exactly that we diverge from?

Neurotypicality is a performance. It is a set of normative ideas that we have come to accept as “normal”. While those normative ideas my change based on the local environments culture, the truth remains that the word “normal” has been weilded as a weapon to justify the dehumanisation and oppression of all who can not, or will not, assimilate.

Normality is itself a social construct. It is an abstract entity. It is not measurable or tangible. While one could argue that normality is a word that represents that which most have on common, we could just as easily have given it the opposite meaning.

All words are essentially meaningless. The objective truth of a words meaning is something of a social contract between ourselves and those around us. For the context of this essay, let us take normality or “normal” to mean the most commonly found attributes of a given population.

In this sense, Autistic and otherwise neurodivergent people are abnormal. We have diverged from normality, representing what is framed by wider society as an aberration in the status quo. On the basis of this, a global industrial complex has risen up in order to not only force our assimilation into normality but also turn that endeavour into a profitable business.

How does one move forward when the world is at odds with your existence?

Even in neurodivergent communities, we frame ourselves through our differences. Celebrating the idea that we are different to that which normativity requires. While their is beauty to be found in such an existence, I believe that we must transcend the limitations of normality. Not through our difference, but instead by our assertion that “normal” does not exist.

We are not different because of our lack of normality. We are different because we embrace individuality and diversity. The difference between normality and normativity is semantic in nature. Normality is the attractive package that is gifted to us to take into our home. We must challenge normativty at its core and not at its surface.

To move into a post-normal society, one must first be able to conceive of such a place. We must establish new boundaries that turn the sound of normality into background noise. Drowning out normative beliefs with the voices of those that refuse to assimilate.

This, of course, presents a problem for not just neurotypical society but also neurodivergent communities. Even in our own culture, there exists a kind of essentialism in the idea that you are either neurotypical or neurodivergent. In a post-normal world, words like “divergent” and “typical” become redundant. If we have no preconceived notions of normality, then there is no need for a counter-culture. There is nothing to assimilate into.

Such a world would allow for the emancipation of neurodivergent communities but fundamentally alter the meaning of what it means to be neurodivergent. We would not be connecting over our differences but rather our shared culture. Such culture is difficult to quantify at this stage because we still have a long way to travel.

For now, this kind of neurofuturism may sound naively utopian, perhaps even dystopian, depending on your outlook. If I can be sure of one thing, it’s that it’s time for us to conceive of a world beyond normality. It is the first step on a journey toward a world where the oppression of neurodivergent people is no longer possible.

Drug use, addiction, and neuroqueering

I have extensively explored my Autistic relationship with addiction thus far. I have considered and lamented the inappropriate treatment services, the suffering, and rejoiced in the moment that I came out the other side. I have listed numerous reasons that contributed to my active addiction, but what I have not done is really drive home the core point of why I kept coming back to drugs. I need you to know what gave me that drive to persevere with something that could have very well cost me my life.

I was undiagnosed Autistic for the first 26 years and 7 months of my life. I know that many, if not most of you, will understand the isolation and alienation that comes with such an existence. It seemed as though everywhere I turned, I was met with condemnation and assertions of my inadequacy. It extended far beyond bullying. It was more than abuse. The world taught me that who I was, the very essence of me, was only as valuable as my ability to assimilate into the culture of my local environments.

I had never wished to enter into the culture of normality. I felt that my lack of desire to fit in reduced me to a non-person. In a world where I could be anything, I would give anything to not be me. My fluid identity was more akin to vapour at this point than it was to any tangible form. Society constructs our sense of Self through our interactions with the environment. My environment rejected me like a gangrenous limb.

Perhaps then you can start to see where the twisted beauty of drugs seeped into my life. Not only could I alter my perception of the environment, but I could also alter the way those in my environment perceived me. Different drugs allowed me to put on and take off identities like clothes. They allowed me to explore the inner workings of my mind. I could manifest the Self in whatever way I saw fit.

Much like the sculptor trying to free the art from its marble prison, I was able to shed the constraints of human thought. Drugs allowed me to rewire my bodymind. I was no longer the necrotic manifestation of the universe, but instead the explorer. I was attempting to neuroqueer without even knowing it.

Sadly, this lifestyle was not sustainable. In order to explore the fluidity of one’s identity, it is necessary to be at some level of peace with your Self. At least in my experience. My attempt to neuroqueer my way to peace was fundamentally flawed. I wanted to subvert myself, not normative attitudes. I was trying to diverge into neurotypical performance.

Perhaps that is why I kept returning despite the dangers. Neurotypicality was a performance that I could never manage. What is it they say about try8ng the same thing over and over and the definition of insanity?

The irony in this story is that at almost seven years of tee total sobriety, I can now see that my journey through that time has actually made assimilation not just less possible; The thought is abhorrent to me. For my safety now, I steer clear of “recreational drug use”. My days as a self-confessed psychonaut are over, and quite honestly? I’m okay with that.

Some people falsely believe that addiction is an illness. Personally, I believe that given the right environmental ingredients, it becomes an inevitability. For me, addiction has been a necessary evil. It was necessary for me to deconstruct the Self that had been built on the rotten foundation of subjugation and childhood trauma. That deconstruction allowed me to make space for the infinite possibilities that lay within my neurology.

The world needs us to regularly deconstruct that which society has built. It’s often a violent and painful process, but necessary as we explore what it means to be neurodivergent. Perhaps more so, what it means to be human.

If I could ask one thing of you, dear reader, it is this; when you see a person suffering, do not offer them vague pity and generic platitudes. Offer them your hand to place a new foundation, upon which all can stand to explore the fluid nature of human identity.

Latest updates on my books!

It’s been a hectic time since I published my first book at the beginning of November 2022. I have worked hard to get The New Normal: Autistic musings on the threat of a broken society out in the formats that people asked for. With that in mind, what formats is it out in?

First and foremost, it is out in paperback and ebook format, available from Amazon in multiple countries, and Barnes & Noble (paperback only, and US only). There are two editions out. This is because the first edition did not meet requirements for wider distribution off of Amazon.

So here are some links if you wish to purchase the paperback and ebook formats:

Lots of you also asked for an audiobook version. So, naturally, I made that happen! The audiobook is currently available on Audible, but will soon be available on Amazon and iTunes. Here is the link to the Audible edition:

So what else?

I recently published another chapbook. No, it’s not a poetry book this time. This is a three part essay on my experiences with neuroqueering, and it is also where I introduce my concept of the Chaotic Self that you may have heard me talk about in livestreams!

The book is called A Treatise on Chaos: Embracing the Chaotic Self and the art of neuroqueering. It is currently available in paperback and ebook, also both on Amazon and Barnes & Noble. Here are the links:

If I can ask one thing of you all, please share the he’ll out of this news! Tell people about my books, write reviews, spread the word! Being self-published was a fun experience, but sadly, I lack marketing resources and I am being drowned out by some of the other wonderful books that are releasing at the moment. I would love to think that people get a chance to hear my message!

I am published in print in a couple of other places. For more information please click here

What purpose does the concept of mental “illness” serve?

As a Schizophrenic person, I see many talk about me as being mentally “ill” and in need of medicine. I do take medication, but for me, medication usage is similar to what one might see within ADHD communities. Medicine is a tool, not a treatment. It allows me to function in environments that are not designed to be accessible to me or my needs. It allows me to live my life without the constant experience of distress, one that I experience without medication because the world is not designed for me.

All suffering is valid, and all neurodivergence can result in suffering. Not because we are ill, but because the world is a traumatic place to live. Neurodivergent people have to face the oppression of all that is different on a daily basis.

“Illness” as a concept within psychological wellbeing a distress is a convenience. It allows professionals to tell us our suffering is unavoidable. If we die by suicide, then we are collateral damage. Victims of a pathology ravaging human kind. If we are “ill” then professionals and leaders do not have to acknowledge their role in a system, causing us distress.

This is what we are actually experiencing. Distress. When we can move forward from pathology models and start to consider that what is happening is a very human experience, we can start to point the blame where it belongs. A world that is violent and terrifying for a huge portion of the population. It is not on us to recover from a mysterious, unquantifiable entity of illness. The world needs to change.

We need to recognise that distress is a human experience, and no two humans have the same experience. Just because my distress looks like the loss of our shared reality does not mean that I am ill. Just because I take medicine that eases my distress does not mean I have a disorder. We don’t assume ADHD’ers to be ill for taking medication. Why do we do it to other forms of medication-assisted neurodivergence?

This ties us up in ideas around med-shaming and toxic positivity. One of the reasons people feel shamed of their meds is because, to them, it feels like an admission of guilt. They weren’t strong enough to survive without becoming ill. It’s not fair to let people feel that way. It’s also unfair to go the other direction and tell people to manage their distress without tools such as medicine. It’s possible to be neurodivergent (and not ill) and still need medication for day to day life.

Neurodivergence is aggressively neutral. It has positives and negatives, and it also has experiences that are not able to be compartmentalised. Truthfully, neurodivergent experience is human experience. The fact that we have to section off different experiences and diagnose them as “illness” or “disorder” fundamentally undermines the neurodiversity paradigm.

Mental “illness” is a deeply flawed concept, and until we fix this, we will not be able to reduce human distress.

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