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Why is it so important for CAMHS to support Autistic children?

Autistic children, much like Autistic adults, live in a world that bombards them with traumatic experiences. There is often a misunderstanding around what trauma is caused by the neuronormative standard of what is allowed to be viewed as traumatic. The truth is that trauma can look different for Autistic people. Trauma that often lands our children on a CAMHS waiting list.

It is no surprise then that in a previous article I found that 70% of Autistic people experience issues with their mental health compared to 25% of the general population. This has resulted in a staggeringly high suicide rate with equally concerning numbers for the number of attempted suicides. Autistic people are losing their lives because of the cruelty and mistreatment inflicted upon them by this world.

Why is it then that CAMHS is turning away children who carry a label of “autism”? As soon as that word is queried or associated with the Autistic person, many services will turn them away. If you are Autistic and on a CAMHS waiting list, you very quickly learn that your struggle is not something that can be supported.

Autistic children are often referred onto disability services that lack the understanding to support their mental health needs. Too many Autistic children need CAMHS but are instead offered services that lack the expertise to support them. It seems as though there is some circular logic going on here.

CAMHS won’t support Autistic children because they lack the specialist knowledge to do so. However, because this means that Autistic children represent a small amount of their service users, it is deemed that there is no need to upskill their staff. It becomes an iron circle of failure.

Beyond this, CAMHS aren’t even offered the funding to upskill their staff. Mental health services in general have faced decades of underfunding meaning that despite the government’s promise of £150 million in additional funding for mental health, it is likely that this situation is far from fixed.

CAMHS are not just turning away Autistic children. They have a significant lack of competence with regard to Autistic people. This, in part, can be traced back to the medicalisation of Autistic experience and the ignoring of Autistic voices. A lot could be changed simply by inviting Autistic researchers, advocates, and activists into clinical commissioning meetings.

Fundamentally, the first step is to have Autistic children admitted to CAMHS services. The current situation allows for their existence to be ignored, creating environments with no requirement for doing better. We can’t stop there, though, because to do so would be to relegate Autistic children and their families to the position of perpetual educators. Autistic people are not a free educational resource.

We are real people with real lives. Autistic children, like any children, feel love, fear, happiness, and sadness. All Autistic people are threatened while the younger generations of our community are inappropriately supported. We need to create a world that says yes to supporting Autistic children rather than bickering amongst themselves over who is the most qualified to support them.

If you want to be a part of making a difference, please sign this petition.

Check out more on this topic on the CAMHS Crisis resource page.

To support my work, please consider purchasing a subscription to my Substack.

PDA: Are we repeating the same mistakes we’ve already made?

This article was co-authored by David Gray-Hammond, Tanya Adkin, and Autball

If a tree falls in the woods and no one is there to hear it, does it still make a noise?

While a lot of PDA literature, including the recent practice guidance, does indeed state that non-speakers and intellectually disabled Autistic people can have a PDA profile, are we ignoring the elephant in the room?

What does PDA look like in non-speakers and intellectually disabled Autistic people?

Nobody seems to know.

“Those with severe IDD were excluded from some of the analyses regarding the rate of PDA in subgroups, given that it is difficult to envisage the whole PDA phenotype developing in an individual with severe or profound general cognitive dysfunction.”

Gillberg et al (2015)

It seems as if no one has even asked them about their experiences.

“For this study, only data from parents who reported their child to have mild or no learning difficulties/intellectual disability were included in the analysis.”

O’Nions et al (2014)

The above quote was taken from a paper called “Development of the ‘Extreme Demand Avoidance Questionnaire’(EDA‐Q): preliminary observations on a trait measure for Pathological Demand Avoidance.” It literally sought to develop, and did develop, a tool for the identification of extreme demand avoidance/PDA. While guidance does say that the EDA-Q is not a diagnostic tool, they also say the following:

“Nevertheless the EDA-Q is useful in assessments”

PDA Society Practice Guidance

Much in the way that historical research around autism has looked at young, white boys, creating bias in the diagnostic criteria (which is responsible for an unfathomable amount of harm); we are creating diagnostic (but not) tools for PDA that exclude intellectually disabled Autistic people. No wonder we aren’t finding them!

There seems to be some very familiar narratives appearing around PDA.

There is a suggestion of a spectrum of which PDA only exists in those with average or above average IQ’s. This is disturbingly reminiscent of Asperger’s and the sub-categories of autism that were consolidated in the DSM 5. The era in which PDA was conceived was the era of the spectrum. It seems that we left PDA behind.

One of the reasons these sub-categories were consolidated is because of the lack of diagnostic consistency, much like we see within the PDA narrative now. We have clinicians refusing to accept it’s existence, additions and adaptations to criteria, the not so subtle suggestion that PDA can only exist within a certain type of cognitive function. Those that think it is not exclusive to Autistic experience, and those that think it is a trauma-response or highly sensitive neuroception. There is no agreement as to what PDA is. As such, it’s no wonder that so many clinicians are refusing to accept it’s existence.

Another one of the reasons for the consolidation was the tendency to dismiss the needs and struggles of those that were labelled “aspergers” or “high functioning”, versus the ignorance of autonomy in those deemed “low functioning” and the attribution of any co-occurrences to “severe autism”. Is the reason we are not identifying intellectually disabled PDA’ers because those driving the narrative are attributing any additional needs to “severe autism”? This would also explain the exclusion of non-speakers. They have not moved on from the spectrum era.

We also need to consider “Aspie supremacy” where by a group of people considered “aspergers” felt that they were superior and separate to “general Autistics”. We are seeing the same thing arise in corners of the PDA community and we believe that the exclusion of intellectual disability from the narrative is contributing to this.

There is literal and blatant exclusion of non-speakers. This is done by leaning heavily on speech and language, and “high verbal ability” in the suggested identification of the PDA profile. Again, have we learned nothing? The long held assumption, that non-speaking meant non-thinking and non-feeling, seems ever prevalent in narratives around who does or does not fit the criteria for PDA.

We are not saying that PDA does not exist. The authors of this are either PDA or have PDA children themselves. What we are concerned about is the proliferation of harmful and exclusionary narratives, and the way they create division from the community. The things that are often most helpful in understanding one’s neurodivergence is a consistent and inclusive idea of what that means. We have often discussed the trauma that Autistic people experience, could the narratives around PDA be contributing to that?

If the professionals who are trying to control the positioning around what is PDA can not even agree without arbitrarily excluding people, maybe they should back away. Where is the voice of PDA individuals in the development of research and guidance? The Autistic community as a whole tends to do far better at defining and explaining Autistic experience than any observational model, we can see this in the leaps we have taken in research. It’s time that PDA individuals were offered the same privilege.

Learn from past mistakes, in an effort to not repeat them. So in answer to the question “if a tree falls in the woods and nobody is there to hear it, does it make a sound?” YES. It does. Does PDA exist within intellectually disabled and non-speaking communities? Just because researchers haven’t decided that it’s worth looking at doesn’t mean the answer is no.

Autism and addiction: co-existing with a mind that seeks oblivion

The narratives around autism and addiction are both peculiar. Things are the same while appearing different. On the one hand, autism is viewed by wider society as something that happens to a child, as if an unseen force has stolen their humanity. On the other hand, addiction is seen as a moral failing. We are often told that we chose that life.

The one thing they both have in common? People see you as less human than they are.

There are a multitude of reasons for this, but at the core of this experience are the power dynamics within a person’s life. You could be forgiven for believing that the power horizon within and Autistic or addicted person’s life can only be felt in the immediate vicinity, but it stretches much further. Both autism and addiction narratives are controlled and perptuated by governments and media.

The public views us through the information disseminated by those in power.

This makes for an upsetting experience when we are both Autistic and in the throws of addiction. Autistic people are infantilised and mourned as tragedies, but addicts are positioned as hedonistic and selfish. They contradict each other. Most people don’t understand how an Autistic person could become the monstrous embodiment of addiction (and there have been times when I was in active addiction that I was monstrous).

In a study from the University of Cambridge, Autistic people were less likely to report recreational drug use, but nine times more likely to report self-medicating with recreational drugs. Specifically, we were more likely to report using drugs for behaviour management and alleviation of psychologically distressing experiences.

There is a significant link between trauma, addiction, psychological distress, and perceived challenging behaviour. Trauma underlies all of these things. At this point I feel it necessary to highlight that Autistic people are More likely to experience PTSD. I have also explored our relationship with trauma with Tanya Adkin in a wider context here.

The real issue is that addiction professionals tend to lack cultural competency with Autistic people, meaning that they lack the nuanced understanding of the reasons why we use drugs and what that use may look like. This results in an environment where Autistic service users are seen to not engage well or even resist treatment. Rather than consider how to adapt the environment to suit the Autistic person’s needs, we find ourselves left out in the cold.

For me, this meant that once I was a few months sober, I was left with nowhere to turn but twelve-step programmes that really didn’t meet my needs well. I eventually realised that if I was going to stay sober, I had to learn how to do it on my own. Yes, I had supportive friends and family, but no peers to support me from addiction communities.

This is ultimately how I ended up doing g the work I do. I had to learn to co-exist with myself, and part of that process was to use my suffering for something positive. I can’t take back the pain and the wrong turns, but I can hone them into something that can make a clear path for others to walk. I can’t undo the past, but I can make sure that others don’t have to struggle the way I did.

I had to become altruistic. It was a difficult process because the addicted mind is focused on one thing, instant gratification, instant relief from the pain of existence. Existence can be so very painful. Through altruism, I had to teach myself that not everything pays off immediately and that the time I spend working towards something good will often be far more gratifying than popping a pill or smoking a pipe.

I still battle with myself from time to time. Addiction doesn’t just disappear. I have moments where my brain tells me to throw it all away, but co-existence has taught me that I don’t have to listen to the self-destructive thoughts. I have learned it’s okay to pause and wait.

Addiction is one hell of a fight, but coming out of the other side of it is a beautiful thing. It doesn’t make us less valuable to the world. It gifts us a determination to achieve our goals that nothing else can. Recovery is not a straight path, and there are times when we feel like turning back. The journey is worth it. The grass is, in fact, greener on the other side; I know, I’m here.

When you blame autism on brain damage, you harm every Autistic person who exists

Autism elicits a wide range of responses from people. In the Autistic community, we are relatively protected from harmful views on our existence if we wish to be. For many of us, however, there is the ever-present threat of our existence being used to enforce beliefs that are overtly harmful.

People have argued ad nauseum about the “cause” of autism. Vaccines, radiation, antenatal intake of paracetamol use. In one particularly bizarre twist, I was told that Peppa Pig causes autism. That was an odd conversation. Regardless of what may or may not have led to the existence of Autistic people, these narratives are incredibly harmful.

When people look for a cause, what they are really asking is “how is this person damaged?”

We have been positioned as living tragic loves, devoid of humanity; mindless automatons that express no love and feel nothing that can be quantified by our neurotypical carers. We are placed into the role of perpetual burden, afflicted by an abstract concept that has stolen our parents wishes for our future.

This isn’t to say that all Autistic people have the privileges I do. I am a relatively well-educated, white, cis-gendered, perceptible male person. I am what is usually expected of an Autistic person (on the surface at least). Many of us exist at multiple intersections. We have differing support and care needs, we have a variety of co-existing diagnoses, we come from various races, social groups, gender identities.

Autism doesn’t discriminate in who it affects because it doesn’t exist as a separate entity. In literal terms, autism doesn’t exist. It’s not some invisible force that steals us away from the world. It’s at the core of how we experience the world and embody ourselves. Autistic people do exist, and writing our stories as a Shakespearian tragedy serves no purpose than to make our lives harder.

The idea that we existed “pre-autism”, that we were something different before becoming different hurts. It places us in the position of feeling less valuable. We live in a world that is increasingly throwing away things that break. If we’re broken, when will you throw us away?

Rather than fixate on why we are the way we are, why not accept that we are here as we are. Instead of pouring efforts into preventing us, into identifying what broke us, that energy could be spent helping us thrive. Thriving doesn’t have to mean working full time and raising an army of children. The time that is spent on prevention of people like me could instead be spent on working out what thriving looks like amongst the diverse Autistic community, and how it might be achieved.

Autistic people deserve to exist. No human exists to be moulded into a comfortable shape for others, so why do we hold Autistic people to a higher standard? Why do we focus on the discomfort that our existence causes for normative society?

Perhaps the time has come to look to our shared goals and to move beyond the world of pathology.

I am different, not damaged.

Failure by the NHS to adhere to the United Nations Convention on the Rights of Persons with Disabilities

This article was written by an anonymous guest author

This post references:

UN Special Rapporteur on Torture

UN Convention on the Rights of People with Disabilities

UK Mental Health Act (1983)

We are at a pivotal crossroads on our path towards a fairer society, faced with a monumental issue that, while hidden, carries unsettling implications.

The UK’s National Health Service (NHS) has repeatedly been implicated in serious violations of human rights, as outlined by the United Nations conventions on the rights of disabled persons. This is not merely an affront to international law; it’s a harsh, terrifying reflection of the suffering inflicted on people with disabilities under the pretext of health care provision.

The UK Government’s ratification of the UN Convention in 2008 was a potent commitment to protect disabled people’s rights, obligating domestic legislation to align with its principles. However, as we traverse through 2023, it’s distressingly apparent that the NHS has systematically breached this social contract, casually discarding the rights of the disabled.

The NHS’s Mental Health Act 1983 blatantly contravenes the UN Convention, notably:

• Article 12, Equal Recognition Before the Law: This Act permits restriction of legal capacity based on mental health status, infringing upon personal autonomy and decision-making rights.

• Article 14, Liberty and Security of the Person: This Act shockingly allows involuntary detention and treatment of people with mental health conditions based on their disability, violating their right to liberty and security.

• Article 15, Freedom from Torture or Cruel, Inhuman, or Degrading Treatment or Punishment: This Act neglects to shield individuals from non-consensual treatments such as electroconvulsive therapy and psychosurgery, which could amount to torture or inhumane treatment.

These issues have persisted for years. In 2013, the UN Special Rapporteur on Torture called for an outright ban on these reprehensible practices.

Regrettably, the proposed Mental Health Act reforms lack the depth needed to align the NHS fully with the United Nations Convention. A fragmented approach is grossly insufficient in addressing these grave infractions.

The field of psychiatry has largely remained reticent on this matter, often keeping these concerns concealed. The victims, who are often society’s most vulnerable, have their stories systematically suppressed.

Alarmingly, our media has mostly remained mute, a tacit accomplice to these profound human rights violations. The much-needed transparency is missing, replaced by a stifling silence that only magnifies the problem.

We must break this silence with knowledge, empathy, and decisive action. Disseminate this information broadly. Challenge the apathy that perpetuates these horrors.

We must unite and place collective pressure on the NHS to uphold its duty to protect the rights of disabled persons. The time for change is now. Let us stand together and navigate our society towards a future where health care is genuinely fair, and human rights are unreservedly respected.

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.

What is it like to need mental health services when you’re Autistic?

According to statistics, 70% of Autistic people have a mental health condition. This is deeply concerning compared to the 25% of the general population that will experience a mental health problem in a given year. Autistic people are also much more likely to die by suicide with current statistics suggesting that the National Autistic Society assert that there is an increased risk of suicide mortality with the Royal College of Psychiatrists suggesting we are nine times more likely to die in such circumstances.

Given these deeply concerning statistics, the causes of which you could author several books on (I know because I wrote some of them), it is no surprise that Autistic people often find themselves in contact with wellbeing and mental health services. Personally, I have been under the care of secondary mental health services (CAMHS as a child and ATS as an adult) for over half of my life.

Both services had their failings, and CAMHS has been in crisis seemingly since it’s formation.

The first thing you need to understand about specialist mental health services in the UK is that they don’t really use a prevention model for intervention. Instead, they use a crisis-driven intervention model that only begins work with you when you are deeply suffering. This was particularly problematic for me as a drug addict; I was perpetually in crisis, but the wrong sort of crisis for professionals to take me seriously.

In my early twenties, I was under the care of a Substance Misuse Service alongside my mental health support. This was remarkable to be between. Like many others, I found that services were never quite sure who should take the lead. It became a self-sustaining cycle of “treat the mental health issues to fix the addiction, fix the addiction to address the mental health issues”. I have witnessed many of my peers fall between the cracks and disappear because of the back and forth of treatment and support.

What has always been quite remarkable for me is the complete lack of understanding of autism in just about every person who said they were prepared to work with an Autistic “service user”. Professionals were often unable to understand my experience, even with the best of intentions behind them. It complicated the feelings of alienation and isolation.

Therapy was always a tricky affair. More or less every single therapy I was offered was based in behavioural methods such as Cognitive Behavioural Therapy (CBT); despite it’s widely known lack of efficacy in the Autistic community. At best, therapy has been moderately helpful, and I have benefited from being able to just talk about the horrible things that have happened to me.

Autistic people experience ALOT of trauma over their lives.

From a more practical standpoint, trying to engage with services has been deeply problematic. I am Schizophrenic. I need to engage, but as an Autistic person, I need predictability and accountability. Professionals are often spotty in their communication, disappearing for weeks at a time, not fulfilling appointment I have made, or being late. This has made engagement quite an upsetting process for me.

While I am “treatment-compliant” I have also found that my medication gets fiddled and altered very regularly. The problem with psychiatry is that it’s so inexact that it barely seems like a branch of medicine at times. Side-effects and constant worry of change sometimes make you feel less willing to engage. I am no exception. Sometimes I have to wonder what’s the point?

Services feel very impersonal. It seems that case-loads for those coordinating our care are so high that we’re lucky that they even remember our names at times. As a person under these services, it is very evident to me just how much they have been defunded by the people in charge. I have to wonder if there would be as many issues if the government appropriately resourced the mental health sector.

There is a point to this. It’s May. Mental Health Awareness Month. Now is the time (apparently) to open up. Autistic people deserve adequate care for their mental health and are not receiving it. Most of us either go private, or accept that things will never be quite as smooth sailing as they could have been. If you’re going to raise awareness of anything this month, think about the Autistic people who are being shortchanged by a service that could very well save their life.

For more of David’s writing, please consider purchasing a subscription to David’s Divergent Discussions.

Don’t forget to head over to the CAMHS resource page and sign the petition to get proper support for Autistic children.

Creating Autistic Suffering: What is Atypical Burnout?

This article was co-authored by Tanya Adkin and David Gray-Hammond

The literature around Autistic burnout is in it’s infancy with regards to academic papers, most of what exists comes from lived experience and blogs written by Autistic people themselves. The first academic paper on Autistic burnout was written by Raymaker et al (2020).

This paper describes Autistic burnout as:

“Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.”

Raymaker et al, 2020

The following image from the paper shows how life stressors and barriers to support culminate in the outcome of burnout for Autistic people.

Typically the Autistic person in question will still have multiple demands in their life that require cognitive resources, despite having little to no resources left to give. Life goes on, as they say.

Burnout is widely understood and reported to be misdiagnosed in Autistic people as depression (Raymaker et al, 2020). This isn’t without basis; burnout can look like stereotypical features of depression such as not being able to attend to day-to-day life and losing one’s enthusiasm for things that used to be enjoyable. People experiencing burnout can struggle to get out of bed, although this is not necessarily a defining feature.

We are moving towards a measurement of Autistic burnout, although it is still in it’s very early stages. Papers such as Arnold et al (2023) suggest looking at things like issues with memory, emotional numbness, and difficulty communicating; all of which are usually taken as features of depression. It’s easy to see where the difficulty in differentiating arises.

The key difference in our opinion is that while burnout can lead to depression, it does not start there, and is rarely responsive to typical treatments for depression. Autistic burnout starts with monotropic split (Adkin, 2022) over a sustained period of time. Burnout recovery can take months or even years, and the recommended course of action is usually to remove as many demands as possible, and recharge through interest-led activities.

As Autistic people, we naturally live as demand free as possible. We do this because whether we are aware of it or not, we have to account for the distribution of our cognitive resources.

So, what happens if we can’t stop?

There are many reasons that an Autistic person may not be able to stop and recover; we may not be able to sense our exhaustion (due to interoceptive differences), masking (it may not be safe to practice authentic expression, it may not even be conscious), responsibilities such as child care, work, and home management. We may have co-occurring ADHD.

What we should try and remember is that burnout is not necessarily a set of observable traits that conform to a checklist. It literally is the result of going into an energy deficit on a regular basis.

Atypical Burnout

The use of the word atypical is not to create a neat category for an observable form of burnout. What we are referring to is burnout that might look different to the typical “depressive” understanding. In our experience it is not at all rare or atypical. We come across this time and again.

What atypical burnout can look like is being stuck in a hyper-aroused state, Tanya often affectionately dubs this as “meerkat-mode”, she describes a meerkat-type nervousness, constantly on the look out for danger, unable to focus and self-regulate creating the need for constant co-regulation with another person, and a fear of being left alone. This is sometimes misinterpreted as attachment disorder because of the childs perceived over-attachment to a parent or safe person. We often see this type of response from children and young people in traumatic school environments for extended periods of time.

This is usually accompanied by significant changes in sensory needs, especially interoception. This can result in a loss of sense of self, and reports of voice hearing. Individuals in this state appear to struggle to differentiate between our own thoughts and something external to their own being. This may be related to the high rates of occurrence of psychosis amongst Autistic people (Varcin et al, 2022).

It would be important at this point to mention monotropic spiral. We may internalise beliefs that seem negative and/or delusional in nature. We can seem stuck in a loop that drags us deeper into these internalised notions.

Rituals and routines can become more pronounced and seemingly compulsive, this is usually in an effort to create some attentional resource and ease an overloaded monotropic neurology.

There is a growing under-current in various circles questioning the validity of the diagnosis of Emotionally Unstable Personality Disorder (formerly known as Borderline Personality Disorder). We know that this is commonly misdiagnosed in Autistic people (Fusar-Poli et al, 2022). We also know that there is a huge amount of sexism involved in the identification of EUPD; women out-number men 3 to 1 in the diagnosis of EUPD (Bjorkland, 2006).

When we reverse that lens, men out-number women 4 to 1 in the formal identification of autism (Rynkiewicz, 2016). Considering the high co-occurence of ADHD and EUPD (Philipsen, 2006) and the well-known co-occurrence of autism and ADHD; is it possible that we might be looking in the wrong direction? Could many of these people be experiencing a protracted, atypical, Autistic burnout?

Or is it just a big coincidence?

References

Adkin, T. (2022) What is monotropic split? Emergent Divergence

Arnold, S. R., Higgins, J. M., Weise, J., Desai, A., Pellicano, E., & Trollor, J. N. (2023). Towards the measurement of autistic burnout. Autism, 13623613221147401.1

Bjorklund, P. (2006). No man’s land: Gender bias and social constructivism in the diagnosis of borderline personality disorder. Issues in mental health nursing, 27(1), 3-23.

Fusar-Poli, L., Brondino, N., Politi, P., & Aguglia, E. (2022). Missed diagnoses and misdiagnoses of adults with autism spectrum disorder. European archives of psychiatry and clinical neuroscience, 272(2), 187-198.

Philipsen, A. (2006). Differential diagnosis and comorbidity of attention-deficit/hyperactivity disorder (ADHD) and borderline personality disorder (BPD) in adults. European archives of psychiatry and clinical neuroscience, 256, i42-i46.

Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., … & Nicolaidis, C. (2020). “Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: Defining autistic burnout. Autism in adulthood, 2(2), 132-143.

Rynkiewicz, A. (2016). Autism spectrum disorders in females. Sex/gender differences in clinical manifestation and co-existing psychopathology (Doctoral dissertation, PhD Dissertation. Retrieved from Medical University of Gdansk Bibliography Database 2016).

Varcin, K. J., Herniman, S. E., Lin, A., Chen, Y., Perry, Y., Pugh, C., … & Wood, S. J. (2022). Occurrence of psychosis and bipolar disorder in adults with autism: A systematic review and meta-analysis. Neuroscience & Biobehavioral Reviews, 134, 104543.

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