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Aug 5 2023
CAMHS misdiagnosed my Autistic burnout and it endangered my safety

For anyone who has been following my writing recently, you will be aware that there is an ongoing campaign regarding the failings of Child and Adolescent Mental health Services (CAMHS). In particular, there has been a great deal of discussion around the fact that they will often refuse to see Autistic children and young people. Beyond this though is a pervasive lack of skill and competence among professionals working Autistic service users.

CAMHS failures don’t rest solely in the hands of under-trained staff. To understand the issues that present themselves, we have to consider the lack of resources and funding.

“There remains a clear disparity between adult and child mental health spending in England. CCGs spend
an average of 12.9% of their overall allocation on adult mental health services – approximately 13 times
more than on [children and Young People’s Mental Health Services]”

Office for the Children’s Commissioner (2019/2020 report)

This disparity means that staff do not have access to a robust budget that allows for in depth training on emerging knowledge around the Autistic experience. Much of the training that staff have access to is horribly outdated and biased towards deficit-based understandings of autism. Of course we have the Oliver McGowan Mandatory Training, but I am yet to find an Autistic person who thinks this training goes far enough or demonstrates the truly dynamic nature of being Autistic.

Autistic Burnout and CAMHS

When considering the understanding that CAMHS staff have around Autistic experience, perhaps one of the most misunderstood aspects of autism is that of Autistic burnout.

“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”

Raymaker et al (2020)

Burnout in Autistic people is often misunderstood as looking like depression, but like many aspects of being Autistic, it is dynamic and diverse in it’s presentations. Trying to quantify burnout within observational methods is like trying to quantify snowflakes. Each instance is unique in it’s own way, even though they all have some general similarities. Sadly, CAMHS staff often don’t even know burnout is an issue for Autistic people, let alone what to look for or how to support children and young people through it.

My own experience with CAMHS

Aged 15, I found myself no longer to attend school. After a series of traumatic life events, my mother found me sat in our living room rocking back and forth, unable to speak. I have written about how CAMHS nearly killed me, but there is more to that story. CAMHS had me labelled a school refuser. They failed to recognise that I was experiencing Autistic burnout. When they should have been supporting me, they instead empowered an abusive school environment.

I was forced to return to the same school environment that had destroyed me. I was bullied by staff and students alike. I dragged myself through my final months in that school, leaving with few GCSE’s and a distinct lack of trust for education and mental health professionals. CAMHS failure to support me as an Autistic person in burnout led to my own suicidality, self-harm, and ultimately addiction and psychosis. CAMHS has the opportunity to provide meaningful crisis intervention, but due to their lack of knowledge labelled me as depressed and difficult.

Autistic burnout is not depression

Admittedly, on the surface, burnout and depression can look similar. The withdrawal from others coupled with loss of interest in previously enjoyable activities are hallmarks of both in the standard sense. However anti-depressants will not end Autistic burnout any more than water will extinguish the proverbial chip-pan fire. When staff labelled me as depressed instead of burnt out, they signed me up for decades of medication and gave my school the power to drag me back into an environment that was killing me.

At a time when I needed support from a community of my peers, I couldn’t even access an accurate diagnosis, let alone discover the huge community of others like myself.

The current state of CAMHS

“CAMHS did not have the knowledge or the skills to identify or treat mental health problems in [Autistic children].”

Read & Schofield (2010)

If CAMHS staff are unable to accurately identify Autistic burnout, it is likely that many children and young people will receive incorrect diagnoses and subsequently inappropriate support. It’s not uncommon for Autistic people to recieve diagnoses of personality disorders and bipolar conditions; this could be because of a disregard and lack of knowledge around atypical burnout, and the diverse range of burnout presentations in general.

Not only are Autistic people being turned away from support, those who make it through the door are actually being made worse. This is not how Autistic people experience mental health support. Children and young people are building towards an adulthood that will already be complicated for them, why do we set them up to experience an even harder time? Our children are dying at the hands of CAMHS.

Please sign this petition to help make a difference.

Sign The Petition

To learn more about Autistic burnout, please sign up for this burnout seminar by myself and Tanya Adkin (August 9th 2023 @ 7pm), free to Autistic parents.

Sign up for burnout seminar
David Gray-Hammond 0 Comments
Jul 27 2023
I was an Autistic psychiatric inpatient: Here’s what I would change in the mental health system

Autistic people are exposed to inordinately high rates of trauma and mistreatment. It is unsurprising then that a large portion of us develop mental health struggles. Where there are concerns around mental health, there are also issues regarding inpatient treatment, both voluntary and involuntary, under the UK’s Mental Health Act. There are currently 1,310 Autistic people under inpatient care, with 93% of inpatients under 18 being Autistic (as of this report in June 2023). Inpatient mental health treatment is a significant issue not just because of our mental health, but also because many of us have been forced to remain in such facilities for months, if not years.

Why are there so many Autistic people in psychiatric facilities?

According to a document submitted to parliament. The following is a significant factor:

“The lack of appropriate community mental health care for autistic people means that some reach crisis-point and are admitted to mental health hospitals.”

National Autistic Society, Document submitted to parliament

This is not a new finding. Community mental health services in general for both adults and children are shockingly underfunded, under-resourced, and not skilled in working with Autistic service users. One might look towards the current CAMHS crisis to consider how a lack of accessibility to good quality and timely assessment and treatment in the community can result in a person reaching crisis point.

We also need to consider the lack of social care support from local authorities. Autistic people all over the country are often gatekept out of vital services that they are entitled to due to failure in the social care sector. Long waits for mental health and social care services are potentiating the the journey towards mental health crises.

What was my own experience as an Autistic inpatient?

Psychiatric wards are intimidating places. I spent the first 48 hours under round the clock supervision. Every aspect of my day-to-day life was under the microscope. Something I witnessed regularly and experienced myself, was the use of restraint. For me, this took the form of chemical restraint, being given powerful tranquilisers that kept me quiet and sedentary. Staff would treat me as a nuisance in their workplace, forgetting that I did not want to be there anymore than they wanted me there.

The building was almost prison-like in its design, with doors that could be closed and locked at the touch of a button, and walls with wire fences on top of them. The beds had plastic mattresses with plastic pillows. Sleep was not an issue because of how sedated they kept me. Staff had no idea how to even identify an Autistic patient, let alone good practice for working with them.

Restraint in psychiatric wards

Autistic people are significantly more likely to be the victims of restraint and seclusion. The International Coalition Against Restraint and Seclusion recently published a report into the use of restraint in schools showing just how common this is in non-psychiatric settings. I assure you it is worse on psychiatric wards.

Chemical restraint is very commonly used in this setting, in fact, I would argue that every single one of us on the ward was chemically restrained. The Care Quality Commission found the following:

“The Mental Health Services Dataset published by NHS Digital for August 2021 shows that 2,465 people in a mental health inpatient setting were reported to have been subject to restrictive interventions in the month, and there were 17 restraints per 1,000 occupied bed days.The data also shows that in August 2021, 790 people were subject to chemical restraint. Among these people, chemical restraint was used on average 2.5 times per person”

Care Quality Commission, December 2021

“…providers did not always recognise how distressing the use of restraint and other restrictive practices could be for people. They also did not recognise the long-term impact of being in restrained, secluded or segregated.”

Care Quality Commission, updated March 2022

It is clear that restraint is used too frequently and in dangerous ways, and yet this continues. Despite the Code of Practice calling for use of least restrictive practices, this is an issue that is prevalent for many inpatients.

What does the code of practice say about Autistic people?

The most interesting part of the code of practice is the following:

“Compulsory treatment in a hospital setting is rarely likely to be helpful for a person with autism, who may be very distressed by even minor changes in routine and is likely to find detention in hospital anxiety provoking.”

Mental Health Act (1983) Code of Practice

Given this we have to consider that the concept of least restrictive practice and the code of practice itself are being failed by the lack of adequate community services. Autistic people are being locked away because there are no better options. That should not be a good reason to do such things.

The code of practice also states:

“If a person with a learning disability or autism is detained under the Act, a comprehensive assessment of their needs should be undertaken to ensure that reasonable adjustments required by the Equality Act are made”

Mental Health Act (1983) Code of Practice

In my experience, this requirement is rarely met, with Autistic people often being given the same treatments and approaches as every other inpatient.

What can we change?

First and foremost, we can change the lack of tailored community mental health support. We should be supporting Autistic people with their mental health within their community and following principles for least restrictive practice. If Autistic people had this they would be less likely to be sectioned under the mental health act. In particular I think of the 93% of inpatients under 18 who are Autistic. How many of them were turned away by CAMHS before finding themselves under section?

Staff need to be significantly up-skilled. This means training them in Autistic experience using competent Autistic trainers who can help to contextualise information. Services would be able to better support Autistic people if they understood the nuances and differences in our experiences. Staff who are better prepares are also less likely to resort to the use of restrictive practice.

Parents need better support. Parents of Autistic people are more likely to be socially isolated creating tension in the family environment that can decrease the mental wellbeing of the whole family unit. We must also remember that many Autistic children and young people have Autistic parents and carers.

We need service user involvement models to be implemented in service commissioning. When a service is designed and implemented, it should be mandatory for service users to be involved in the design and implementation of service provision and policy. A service without the input of service users is fundamentally flawed.

Finally, we need improvements to social care provision that would allow for services to implement support that reduces the psychological burden of being Autistic in an environment not designed to support you. Improvements in social care can make a big difference to the psychological wellbeing of Autistic people.

It is clear that Autistic people require a great deal more from the services that currently exist than what is available. The issues above are not an exhaustive list and until such time that issues within the mental health system are addressed, Autistic people will continue to be inappropriately help in inpatient settings.

What can you do now?

Visit the CAMHS Crisis page of this website.

Sign the petition to make CAMHS accept Autistic young people.

Learn about Autistic experience- this seminar on burnout I am giving with Tanya Adkin is free for Autistic Parents.

Share this article and similar articles.

David Gray-Hammond 1 Comments
Jun 24 2023
Autism and pain: When pain management options are limited

I have recently been writing about the Autistic experience of pain and the risk that it presents to Autistic people when medical professionals do not understand the way we display pain. Some of us, however, live with chronic pain and are prescribed painkillers. For a lot of people in that position, narcotic pain relief serves as the only option. What people often don’t realise is that being able to use narcotic pain relief is a privilege, and not all of us have that privilege.

I am not only Autistic, ADHD, and Schizophrenic. As of this year (2023), I am seven years sober from drug addiction. The drugs I was using that are most relevant to this conversation were opioids, benzodiazepines, pregabalin, cannabis, and spice. I was using all of these drugs very dangerously and, as a result, have chosen a life of complete abstinence. If I hadn’t, doctors would not prescribe anything similar to them anyway.

This has left me with very few options for the pain I experience related to my hypermobility. Realistically, I can only take paracetamol and naproxen. Neither of these offer much relief from bad pain days, but they do reduce the pain just enough that I can mask it.

Addiction isn’t the only exclusionary factor that can stop people from accessing the privilege of strong pain relief though. Allergies, or an intolerance to side effects, make the use of strong pain relief impossible. Even in countries where medical cannabis is legal, cannabis is not suitable for everyone. For me personally, cannabis use always ends with me using harder drugs. For some, it affects their mental health or makes them experience unpleasant thoughts and feelings.

This has landed many Autistic people in a sticky situation. We have nowhere to turn for pain relief. Pain we may not express in a “typical” way or be able to articulate. It means living in a state of constant dysregulation. Despite this dire need for strong pain relief that does not have mind altering effects, pharmaceutical companies are yet to create anything.

Autistic people are significantly more likely to experience chronic pain, with Autstic children being twice as likely to experience it as their non-Autistic peers. We then have to consider the risk of addiction in Autistic people due to self-medicating. To top that off, just over a third of addicts in this study were abstinent upon successful discharge from treatment. To me, these statistics say that there are a significant number of Autistic people unable to manage their pain effectively without the risk of relapse into addiction. Let’s also not forget the risk of habituation among people new to opioid pain relief.

The cherry on top of all of this is that recovering addicts who ask for pain relief are often accused of drug-seeking and ignored. This can only be compounded by professionals who do not understand Autistic presentations of pain. There is a great deal of stigma around addiction in professional circles. With chronic pain being a risk factor in already elevated suicide rates amongst Autistic people, this is an issue that can not be ignored.

When researchers are spending millions on looking for why we exist, rather than trying to improve quality of life with regards to things like this, is it any wonder that there is a gulf between us and them?

David Gray-Hammond 1 Comments
Jun 17 2023
Autistic people are dying early; medical perceptions of pain are contributing

I recently posted about Autistic people and the expression of pain. One thing that has become clear to me is that not only do we not have the same relationship with pain as non-Autistic people, people in the wider environment constantly invalidate that relationship because they don’t want to believe our lived experiences.

Original post on Twitter

There are a lot of aspects of Autistic life in which we don’t highlight the disparity in cultural competency amongst professionals. Unfortunately, healthcare is not a battle we cam choose to walk away from. Our lives literally depend on being taken seriously and treated respectfully. There are some troubling statistics around Autistic life expectancy and mortality. In my opinion, there is correlation, if not a causative relationship between medical mistreatment of Autistics and these harrowing statistics.

Of the statistics, I have seen life expectancies around the age of 36 to 39 years of age (see here and here) for Autistic people. I have also seen suggestions that we are 51% more likely to die in a given year than the general population. I don’t think I need to push the point much further. It is clear that we are not a demographic that necessarily has the best outcomes in life.

Our experience of pain is intimately linked with our sensory experience. In particular, interoceptive differences mean that we can have a completely different response to pain than our non-Autistic peers. Monotropic brains mean we might not be able to stop thinking about the little pains, but may not even notice something significant or life-changing.

The way we embody pain is different as well. Autistic people are known for having different physical expressions, and when you throw in the significant relationship between the Autistic community and the chronic pain community, we can see why an Autistic person may not appear to be in as much pain as they claim to be.

This doesn’t absolve medical professionals of their lack of understanding. When a person works in healthcare, they should be taking people seriously, regardless of whether an ailment presents in the way that is expected or not.

I posit that dismissive attitudes amongst medical professionals and medical gaslighting lead to further health complications from i jury and illness. To consider it another way, if doctors took us seriously, we would probably live longer and happier lives.

For those working in healthcare, I applaud the care you give to many, but there is so much not being done for Autistic people that it can not be ignored. Autistic people are dying every day from ailments that needn’t have been terminal. Next time someone tells you their experience, believe them.

David Gray-Hammond 2 Comments
May 29 2023
Creating Autistic Suffering: CAMHS kills kids

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

This article includes exerts from interviews conducted by David, all interviewee’s gave their permission for quotes to be used.

Tanya has demand avoided weighing in on this topic for quite some time. Not for no good reason. Tanya has felt torn with this topic and the potential outcome of the petition that has been circulating and included in David’s previous articles on CAMHS. This petition has been signed by nearly 190,000 people as we type this. The number is climbing. The petition shines a light on the routine refusal of services such as CAMHS to provide mental health support for Autistic children and young people.

Neither of us have ever been quiet about our opinions on statutory services for Autistic young people, Tanya especially is a firm proponent of the phrase “CAMHS kills kids”. This might sound extreme, but in our lines of work we have seen their lack of competence have life altering/ending consequences.

If this petition succeeds to its fullest extent, and the doors are flung open as tens of thousands of Autistic children across the country flood into CAMHS departments (unlikely to happen quite like this, but bare with us), what awaits us on the other side of those shiny doors? Doors that Autistic people very rarely get to see the other side of.

You’d be forgiven for assuming “support” might be found there. That’s what CAMHS is there for, right? Our biggest fear is that we are just waiting to be disappointed at best, and at worst, the mental health of tens of thousands of Autistic young people is going to get significantly worse.

What might CAMHS offer?

“Services are still being designed without the involvement of the people using them. There is chronic under-funding and under-staffing which is undoubtedly having a huge negative impact on outcomes.”

Charlotte, CAMHS Professional

CAMHS may offer:

  1. Medication–
    • This has it’s place, but 9 times out of 10, in our experience, Autistic people present with mental health issues (especially young people that have been subject to the trauma that comes from an education system not fit for purpose, and woefully underfunded) due to unmet needs. There is no amount of medication that can fill the space where education falls short. It’s akin to sticking a plaster on a stab wound.
  2. Talking Therapy–
    • If an Autistic young person has experienced enough trauma to feel they need to access mental health services, it’s highly likely that they will be alexithymic. The first thing to suffer when a child is traumatised is their interoception. If they can not express how they feel, talking therapies (usually based in CBT) are likely to reinforce the medical model view that they are broken and can not be fixed. Furthermore, they’ll mask through it. Masking is a leading predictor of suicidality in Autistic people (Higgins et al, 2021; Adkin, 2023).
    • Neuronormativity is another factor to consider, if the person who is helping the child or young person comes from a neuronormative perspective that “neurotypical” is the gold standard of being that everyone should strive for, then you’ve given a young person something else to fail at (Gray-Hammond and Adkin, 2022).
  3. Parenting Courses–
    • You can’t parent away Autistic trauma (Gray-Hammond and Adkin, 2021) or burnout, or really any other mental health concern for that matter. Not only is it extremely patronising, it also risks parents being taught harmful, outdated methods based on the lack of competence of those designing and delivering said courses. This leads nicely onto our last offering on the CAMHS shitlist.
  4. Parent Blame–
    • Institutionalised Parent/Carer Blame (IPCB) is a real phenomenon (Clements and Aiello, 2021), and the NHS is an institution. The thing about IPCB is that it covers the lack of professional competence and protects their egos by shifting the onus of responsibility onto the parent and subsequently social care. It’s also a fantastic cost-saving tool. Unfortunately, it often has devastating consequences. It’s not only the young person not getting their needs met, it’s the trauma of parents believing they are responsible for their young person’s mental health difficulties. The trauma accrued from social care involvement. The worst but not uncommon occurrence of an accusation of fabricated and induced illness (Gray-Hammond and Adkin, 2022).

” I worry about staff knowledge levels regarding up-to-date autism practice and the nature of the interventions offered”

Jenny, Parent of child under CAMHS

What do Autistic children and young people with mental health concerns actually need?

“Practitioners need to be better equipped to recognise the differences between treatable mental health difficulties, and challenges within the context of autism”

Charlotte, CAMHS Professional

They need:

  1. Sensory Integration trained Occupational Therapists
    • This is absolutely essential to understand the sensory profile of an Autistic person. It allows us to make provision and adjust the environments they exist in accordingly. This in turn reduces the impact of sensory trauma (Fulton et al, 2020). This also affords the young person and the people around them understanding of their needs. It reduces anxiety and builds self-advocacy, while simultaneously helping develop coping strategies.
    • There’s one problem with this, there are not enough qualified OT’s. There is a workforce crisis across social care and the NHS (Brexit doesn’t seem like such a bright idea after all…). This is just for regular OT’s. To become a sensory integration OT you need approximately two years extra post-graduate study (Can’t see the government finding a magic OT tree at the bottom of the garden any time soon).
  2. Mental Health professionals that will call out the school system for the trauma they cause
    • Unfortunately, it’s not considered “professional” to call out other statutory services. Health professionals are often told that they can not comment on education because it is outside of their remit. Tanya would argue that safeguarding is everyone’s remit (David agrees). We would remind professionals that physical and mental health have legal parity (Baker and Gheera, 2020). If a teacher willfully broke a child’s leg, it would be on national news. Yet, routinely restraining an Autistic child into a traumatic environment is the norm (Gray-Hammond, 2023). Or even worse, threatening parents with either social care (safeguarding) or financial penalties for non-attendance.
  3. Competence
    • As previously mentioned, we need professionals that fully understand Autistic experience and culture. Everything from masking to monotropism, burnout to community-connectedness (Botha, 2020). Without competence, you can’t have safety because the person will not be aware of their own neuronormative viewpoints. The cycle will continue.

“I remember one clinician telling me, ‘there’s not much you can do with them’ as in therapy for autistic children.”

Jane, former CAMHS Professional

Where does this leave us?

We are pretty much stuck between a rock and a hard place. On the one hand, it’s a question of supply and demand. If we demand, theoretically they should supply. In reality, how many of our children do we need to throw under the CAMHS bus until they get the message? This doesn’t stop at a petition. As any SEND parent will already be aware, this is just one rung on a never ending ladder of fighting, advocating, and holding professionals, services, and our government to account. So please sign this petition and help us place our Autistic feet on the proverbial ladder.

References

Adkin, T (2023) Mask on, Mask Off: How the common understanding of Autistic masking is creating another mask. Emergent Divergence.

Baker, C. and Gheera, M. (2020) Mental health: Achieving ‘parity of esteem’. HM UK Government.

Botha, M. (2020). Autistic community connectedness as a buffer against the effects of minority stress (Doctoral dissertation, University of Surrey).

Clements, L., & Aiello, A. L. (2021). Institutionalising parent carer blame. The Experiences of Families with Disabled Children in Their Interactions with English Local Authority Children’s Services Departments. Cerebra. University of Leeds.

Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England. Autism, 23(2), 477-493.

Fulton, R., Reardon, E., Kate, R., & Jones, R. (2020). Sensory trauma: Autism, sensory difference and the daily experience of fear. Autism Wellbeing CIC.

Gray-Hammond, D. (2023) Restraint and seclusion in England’s schools. Emergent Divergence.

Gray-Hammond, D. and Adkin, T. (2021) Creating Autistic Suffering: In the beginning there was trauma. Emergent Divergence.

Gray-Hammond, D. and Adkin, T. (2022) Creating Autistic Suffering: Fabricated or Induced Illness, state sanctioned bullying. Emergent Divergence.

Gray-Hammond, D. and Adkin, T. (2022) Creating Autistic Suffering: Neuronormativity in mental health treatment. Emergent Divergence.

Gray-Hammond, D. and Adkin, T. (2023) Creating Autistic Suffering: Autistic safety and neurodivergence competency. Emergent Divergence.

Higgins, J. M., Arnold, S. R., Weise, J., Pellicano, E., & Trollor, J. N. (2021). Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating# AutisticBurnout. Autism, 25(8), 2356-2369.

David Gray-Hammond 15 Comments
May 20 2023
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.

David Gray-Hammond 1 Comments
May 14 2023
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.

David Gray-Hammond 0 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
Jul 28 2022
Neuroqueer: Depathologising psychiatric “conditions”

This article was co-authored by David Gray-Hammond and Katie Munday

Trigger Warning: Ableism, pathology paradigm, sanism, use of words insane and madness, medication, therapy and trauma.

Neuroqueer theory evolved out of the neurodiversity paradigm. It was a logical progression in the field of depathologising natural variations in the human bodymind. This concept appreciates the neutrality of neurodivergence, as neither good or bad, it simply is.

While this concept has been widely explored in the area of intrinsic neurodivergence, (such as autism and ADHD), there is less discussion regarding acquired neurodivergence; neurodivergence that is typically acquired through trauma or the intentional alteration of ones bodymind (such as through the use of psychedelic drugs). Specifically, we wish to discuss the concept of psychiatric “conditions”.

Psychiatry itself is one of the youngest branches of medicine, first mentioned by name in the late 19th century. Due to its infancy the field still remains fallible, and is largely governed by the contents of a single textbook; the Diagnostic and Statistical Manual of Mental Disorders (DSM) currently on its fifth edition, and the recipient of a recent text-revision (DSM V-TR). Unsurprisingly, this textbook is based entirely in the pathology paradigm, with all bodyminds described in its pages as “disorders”.

The use of the word “disorder” is important. This word places a level of responsibility on the individual to return to a more “ordered” state, dictated by cultural norms. This has historically been achieved through the use of psychoactive drugs, which are often prescribed before the use of talking therapies.

Psychiatry has a place in the world, but currently relies too heavily on the use of medication, without understanding the context around individuals. This is why it is important for psychiatrists to take a more trauma-informed, neurodiversity-affirming approach. There is a balance to be found between the use of medication, and the introduction of talking therapies that encourage the individual to co-exist with the traits of their neurodivergence.

It is important to understand and work with people holistically to reduce their distress, as many of us are seeking support due to ongoing trauma.

We are living in a world that overwhelms our senses, ignores our social communication differences, and treats us as second class citizens. Autistic people are made to adapt to norms that are both uncomfortable and harmful, and this creates complex-trauma for an increasing number of us. Once we experience bullying, isolation, and neglect, our self-worth takes a nose-dive. Often we mask our Autistic differences for fear of ridicule, perpetuating the low self-esteem that arises from forced conformity and assimilation. This becomes a cycle of shame that encourages us to hide our true selves, in return for a semblance of dignity.

So where does neuroqueer theory fit into this?

Cultural expectations of mental health are based heavily in sanist ideas of “normal”, and define our understanding of “madness” as anything that departs from these expectations.

Taking a neuroqueer approach allows us to embrace our differences, whilst appreciating that many of us still need accommodations. This is why emerging talking therapies that teach co-existence (rather than interventions that aim to change us) are an important step forward.

Subverting the expectations of our societies predominant culture, we reclaim ourselves, and learn to co-exist with our “psychiatric” self. No longer are we “insane” by normative standards, but neurologically queer, and refusing to be ashamed of that.

David Gray-Hammond 3 Comments
Jun 8 2022
Coping with psychiatric medication when Autistic

For many of us, medication is a necessary part of life. For a huge portion of the Autistic population, that medication is prescribed by a psychiatrist.

Psychiatric medication can be a troublesome topic, psychiatry itself is a relatively young discipline, and can often be found to be neuronormative in nature. It relies on the idea that the human mind can become ill and require medicine to fix it, and yet no test can definitively prove the presence of this illness in the body. It seems logically absurd, and yet, mental health issues can cause immense suffering.

One of the most stressful parts of taking these kinds of medications is finding the right one. Each person brings a different neurology to the table, so when using psychiatric medications, which by their nature act on the brain, it is important to remember that there is no “one size fits all” approach. Each person will have a different experience with medication, and this issue is compounded when you consider the Autistic population, for whom little to know research is done on the efficacy and safety of medications.

This moves us neatly onto my next point, which is side effects. Autistic people often experience rare or paradoxical reactions to medications in my experience. A recent medication change for me actually turned the skin on my hands blue! This is why I always ask my psychiatrist to take the harm reduction approach of start low, go slow. In other words, start with the lowest reasonable dose, and very slowly titrate the dose up. I find that for me, this has helped me avoid many of the less tolerable side effects, and better tolerate the ones that I do get.

An interesting point raised by twitter user @lilririah is access to food. Many of these medications rely on the idea that people can eat regular, healthy meals. Something that prescribers should consider is that the world over is experiencing a huge rise in the cost of living which is having a huge impact on the disabled community at large. Telling someone they have to eat when they take their medicine can essentially be the same as telling people that they can not take the medicine. When the world is trying to decide between heating or eating, a life or death decision over important medications is not going to help their anxiety.

Once you have overcome all of this, there is the issue of maintaining the treatment. Medication comes with a lot of stigma that many of us internalise, and some people simply do not want the medication in the first place. While personal choice is important, and should come from an informed position, prescribers need to do more to help people maintain a healthy relationship with their medication. When you consider the Autistic and ADHD bodymind, it is easy to see how remembering to take a set dose at the same time every day could become problematic.

Assuming all of this isn’t an issue, there is one more problem I want to discuss. Sometimes medication just stops working. Sometimes we can be stable for years, and out of the blue, we fall apart. It is the unfortunate truth of psychiatric medication. This is why we have to be willing to go over this battle time and time again to stay balanced. I personally struggle with this part. I often wish for a magic pill that would make my psychosis go away forever, unfortunately, that does not exist. Besides, mental health is part of who we are, good or bad, it plays a role in our experience of the world.

Whether your mental health is in a good or bad place, we all have something to give to the world, we are all important in our own way. It’s easy to lose sight of that when you have grown up Autistic, constantly being invalidated and told that everything about you is wrong. I want to assure you that the world is better for having you in it, and the battle is worth it.

Stay strong.

David Gray-Hammond 1 Comments
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