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May 20 2023
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.

David Gray-Hammond 0 Comments
May 16 2023
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.

David Gray-Hammond 3 Comments
Mar 25 2023
Autistics Incarcerated: The dark underbelly of the NHS

This evening, I took it upon myself to watch Channel 4’s documentary on the abuse of Autistic people in psychiatric institutions. As I sit here reflecting on the way the Autistic participants were treated by those meant to care for them, I will confess that I have shed some tears of my own.

I am one of the Autistic people unlucky enough to spend time in carcerative care.

I have witnessed restraint used as punishment. I have been sedated so heavily that it caused me to develop an irregular heartbeat. To this day, I do not publicly name the psych ward where this happened for fear of retribution. Such is the nature of the power imbalance between Autistic people and the mental health system.

The idea that an institution that is legally considered to be “a place of safety” can be so traumatic seems almost absurd. Yet, there are innumerable Autistic people locked away in these places, experiencing things that no human should. Things do not improve upon release; section 117 aftercare so often goes by the wayside.

Autistic people are treated, at best, as a nuisance in the staffs workplace. Staff so rarely seem to consider that they work in a place we are forced to live. The privilege is theirs, not ours. To assume that we should be grateful for being detained indeterminately is to fundamentally dehumanised us. Autistic people deserve softness and caring, not a lesson in how much the mind can handle before your inevitable demise.

This is an issue that the NHS fails to address year on year. I believe it’s because Autistic people are framed as burdensome and irritating in a system that our government has ensured is on its knees.

Now is the time to speak out. I would ask that if you care to share your own experiences, you do so by using the hashtag #AutisticsIncarcerated.

I choose those words because that is the nature of inpatient treatment. It is not a hospital environment. Each and every one of us deserves to know that we have a place to turn at our darkest moments. We shouldn’t have to fear seeking help.

David Gray-Hammond 8 Comments
Feb 17 2023
Power dynamics and mental health: Neurofuturist discourse of mental health

When we consider power dynamics, we often consider our external environment and how power flows through the various parts of society, and where privilege is afforded by that power. While discussion of intersectionality and power dynamics is important when considering where discourse comes from and how it affects groups of people, we often don’t think about how such discourse injures our relationship with the Self.

Mental health has long been the remit of medicine. Distressing or unusual behaviour has been positioned as a pathology requiring treatment for decades, despite this approach not improving outcomes for those it affects in that entire time. We use a lot of troubling language when talking about psychological distress; disorder, condition, ailment, mental illness, psychopathology. Each of these words conjure up images of a medical emergency. They tell us that a problem is situated with us and that we need to be fixed.

We then also have to consider the militaristic language that surrounds medicine. “Chronic illness warrior” and “lost their battle to cancer” immediately spring to mind. The effect that these co-occurring discourse (see what I did there?) have on our sense of Self is to enter us into a fight with our own experiences. Experience helps shape the Self meaning that the popular discourse around mental health is placing us into a war with our Self. It is no longer okay to be us.

The irony here is that constant fighting with our own sense of identity causes further psychological distress. Perhaps the reason that outcomes in psychiatry have not improved for over half a century is because their methods and discourse are actually escalating our distress.

Instead of asking “what’s wrong with me?” We need to shift discourse over to “what happened to me?”. It’s vital that psychological distress be placed in the context of one’s environment and experiences of the complex power dynamics within them. There is a word for systems that require us to fight ourselves into a more socially acceptable place; oppressive.

Current systems within mental health treatment are weapons of the oppressive cult of normal.

As we look to the future, we need to consider how we will emancipate ourselves from normativity of all kinds and what we will accept as freedom. Society has spent a long time pathologising those identities and experiences that do not serve its own goals, and the time has come to stand tall and proclaim aloud; who I am has value, I will not be placed at odds with myself.

David Gray-Hammond 1 Comments
Feb 13 2023
Mental health and the diagnostic process: A neurofuturist perspective

As I discussed in my recent article about co-occurring conditions, the diagnostic process in psychiatry is inherently flawed on the basis that we have failed to find any meaningful relationship between the so-called “symptoms” of psychiatric conditions, and physical biomarkers which can be measured. Despite this lack of physiological cause, we are still diagnosing people as mentally “ill”. Despite this model not improving outcomes for around half a century.

So now we are faced with the issue of how diagnosis is not just given, but also how it is given responsibly.

One of the biggest flaws of psychiatry is the circular logic that dominates the diagnostic process. A person is Schizophrenic because they have symptoms of Schizophrenia, and they have those symptoms because they are Schizophrenic. This logic does not allow for a nuanced understanding of why a person may experience this particular cluster of traits, it simply follows that A = B, which is because of A.

If this is the case, how does one escape from circular logic?

We have to look for causes for traits and “symptoms” outside of the realm of medicine. While I have often remarked that external factors are the only thing with a meaningful relationship to these experiences, medicine is yet to catch up. It seems reasonable to assume that traumatic experiences are the cause of psychiatric conditions and not a problem within the body. This has ramifications for the future of psychiatry.

If people are not “unwell”, psychiatry now has a moral duty to advocate for it’s patients. Psychiatry needs to evolve into a tool for social change, and cease to be a weapon wielded by normative society. Beyond this, psychiatry needs an understanding of the relationships between neurodivergence, trauma, and psychological distress. It is not enough for psychiatrists to bandage the wound, they need to remove the knife from the hand of society.

This requires us to radically rethink our entire perspective on normality and cultural normative standards. We can not just medicate people and expect them to assimilate into society. We need to help them understand their own unique space in the environment and how to embrace their journey through that space.

As I discuss in my book A Treatise on Chaos, identity is a shifting and ever changing value. We are, at our core, beings of chaos. Psychiatry needs to be a tool for supporting us in the more challenging parts of that chaos, and not serve as a ring-fence around the Self.

Psychiatry is not completely off the trail. Medication can serve as an important tool to support a person’s wellbeing, and can be very helpful for reducing the more troubling and distressing aspects of psychological distress. The most important thing is that we all put in the work to evolve psychiatry and mental health support into a means to challenge the oppressive systems that exist within our world.

It’s time to stop the navel-gazing, and build a better future.

David Gray-Hammond 0 Comments
Feb 12 2023
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.

David Gray-Hammond 3 Comments
Jan 30 2023
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.

David Gray-Hammond 1 Comments
Jan 26 2023
Understanding Autistic mental health in a broader context

We often discuss anxiety and depression amongst the Autistic population. Some such as myself and Autistic and Living the Dream have pushed to get lesser discussed mental health concerns into the zeitgeist, but there is a problem with how it is framed in a more general sense. When most people discuss Autistic mental health, they discuss the individual experiences, I feel it is necessary to look at the bigger picture.

One of the reasons we centre our conversations on individual experiences is because of the medicalisation of acquired neurodivergence. Medical models of psychological wellbeing centre the experience of distress as the defining feature of what is then described as a disordered mind. It teaches is that acquired neurodivergence is the source of our suffering, placing the responsibility on us to adapt to an unchanging environment.

This is where Autistic mental health becomes complicated. In general, Autistic people favour social models of disability and neurodiversity-affirming approaches, and yet we are taught that further neurodivergence is a disorder. It directly conflicts with our understanding of our Self. It partitions off parts of ourselves and teaches us to eliminate them rather than co-exist. What we actually need is to recognise that distress from traditional “Psychiatric conditions” is as much of a reaction to our environment as an Autistic meltdown is.

The environments that exist in our world are inherently traumatic for Autistic people. Trauma alters the way the brain functions, and we are then taught it is our responsibility to recover from that. In truth, the responsibility lies with the environmental factors that cause our distress. You are not suffering because of “illness”. You are suffering because the world is not made with your needs considered. When the world consistently abuses us, crosses our boundaries, and fails to meet our needs, we suffer.

Autistic people need to be allowed to co-exist with themselves. We need a world where the experience of distress doesn’t require us to get better but requires the world to do better. Lack of accessibility and invalidation of people’s lived experiences might well be one of the biggest causes of psychological distress in our society.

David Gray-Hammond 0 Comments
Sep 14 2022
Is mental “illness” actually the brain trying to protect itself?

Up until about a year ago, I still sat firmly in the camp that, while I viewed myself as multiply neurodivergent, I was mentally ill. Over the past year I have been unlearning this lesson, and realising that mental “illness” is completely unquantifiable, and instead, I was suffering because I had been repeatedly traumatised, and then lived in a world incapable of accommodating the particular neurodivergence I had acquired. Psychosis.

People hold on tightly to the idea that they are mentally “ill”, and understandably so. The deficit model of mental health has been pushed on us quite successfully, but what if it’s not the person who is ill?

Consider depression. A person experiences a traumatic event (remember, what is traumatic to me, might not be traumatic for you) and starts to feel as though nothing goes well for them. They withdraw from their environment and isolate. Is this an illness, or is this the human brain doing it’s best to protect itself from trauma?

Now consider that the cultures with live with, particular in western society, actively punish people who have experienced trauma. There is a lack of welfare benefits, inadequate and under resourced wellbeing services, and let’s not forget that humans are effectively judged by whether or not they make the right amount of profit while performing a neurotypical display so as to not make others uncomfortable.

To me it seems clear where the suffering is actually stemming from, and it isn’t the person.

However, let me be clear, this does not mean that people should stop taking their medication. I take medication, and it helps a lot. Attention Hyperactive people take meds to help them focus and perform daily tasks.

What I am saying is that while medication can be an important part of wellbeing, we need to recognise that this pathologisation of our human experiences has (for the most part) normalised our suffering.

In the same way that Christianity told factory workers during the industrial revolution that being in poverty guaranteed them riches in the afterlife; pathologising neurodiversity has told us that we are the broken, rather than letting us turn the lense on an oppressive world.

Sadly, many institutions (medical included) have a tendency to serve the overall economic climate, rather than the people they are supposed to help.

So where do we go from here?

We need to build on the neurodiversity movement and paradigm. We need to recognise that despite our suffering, we are not the sick ones. What is sick, is the society we live in. When enough of us stand up and say no, society is forced to change. We need to recognise the rampant oppression and abuse of power, and seriously consider it’s role in the development of so called psychiatric “disorders”.

In short, brains do what they can to try and protect us from suffering, sadly, society continues to inflict pain.

It’s time to drop the disorder.

David Gray-Hammond 7 Comments
Sep 4 2022
Autism, diagnosis, identity, and culture

For a long time now, we have heard the phrase “If you have met one Autistic person, you have met one Autistic person”. This saying is an oversimplification of the fact that Autistic people have a wide variety of experiences, privileges, and neurocognitive styles. The question I want you to ask yourself is this:

Why is every Autistic person different?

Let’s consider the traditional route of Autistic discovery. Many of us found out we are Autistic when we were referred for and then recieved diagnosis. This diagnosis is based on the criteria laid out in the Diagnostic and Statistical Manual of Mental Disorders (or, the DSM) now in it’s fifth edition and the recent recipient of a text revision.

Davies (2022) discusses in their book Sedated: How modern capitalism created our mental health crisis, how the DSM is constructed. Davies discusses that the roughly 370 “disorders” detailed in the manual are voted into the manual by committee consensus rather than by any neurobiological research.

What does this mean for the diagnosis of Autistic people?

It means that Autistic experience is reduced to a list of traits, decided on by professionals who really only see Autistic people when they are in distress. After all, why go to a psychiatrist when everything in life is perfect? It also means that the experiences that constitute a DSM diagnosis of autism are voted into existence by groups whose entire careers are built upon neuronormative ideals.

So, of course we are vastly different from each other.

Herein lies the real existential conundrum though. Autism doesn’t actually exist.

As I write this, I can feel you getting ready to hit that “unfollow” button, but stick with me for a second.

Dr. Chloe Farahar of Aucademy once said that autism doesn’t exist, it’s an abstract concept, the only thing that actually exists is Autistic people.

If autism isn’t a disorder, condition, or even a tangible and existing entity that can be observed and measured, then what does being Autistic mean?

Autistic people are a minority group. We are a group of humans with shared experiences and communication styles. Autistic spaces are shared culture, and “Autistic” is an identity. Our vastly different experiences and privileges make us individuals, but our shared culture and neurocognitive style make us Autistic.

Diagnosis in and of itself is a privilege, a privilege that is required to access support, and in turn, upholds the pathology paradigm that Autistic people are drowning in.

There is a false economy surrounding the word “autism”. The insistence of it’s existence is the thing that is used to force quack cures upon Autistic people. Millions are poured into the prevention of Autistic people and the abject attempts to exorcise the abstract entity of “autism” from Autistic people.

The truth is that you will never separate the autism from the Autistic person. You can not remove what doesn’t exist. The only thing that “cures” and “therapies” will do is traumatise us. Because without our Autistic identity, we would not be us.

To destroy the autism, you will destroy the person.

This is why language matters, and it is why we need to move firmly into the neurodiversity paradigm. It’s time to stop pathologising human experiences.

David Gray-Hammond 6 Comments
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