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May 27 2023
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.

David Gray-Hammond 1 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
May 9 2023
How many Autistic people are in inpatient units in the UK?

When we consider the world of inpatient psychiatric care, we often think about types of neurodiversity like schizophrenia and bipolar. While it is true that these individuals represent a considerable number of admissions, there is a darker side to admission to hospital. Detainment and admission is not solely the realm of traditional psychiatric “conditions”; Autistic people are being locked away for months or even years.

This issue has become so prevalent that the government has had to commission inquiries and reports into the matter. Still, there are a disturbing number of Autistic people locked away in these institutions.

According to the National Autistic Society, as of January 2022 there were 1,185 Autistic people held within the inpatient psychiatric system. Of this, around 1 in 7 (165) were under 18 years of age. It’s not just Autistic adults being detained, it’s our children too. This represents a stark departure from the so-called schemes of “care in the community” that promised to empty asylums and create a community culture of caring for our most vulnerable.

Instead what has happened is the systematic incarceration of Autistic adults and young people for no other reason than not having the correct services in place to support them in their independence. This becomes even more concerning when you consider the current rate at which care home and inpatient units are experiencing scandals around the mistreatment and abuse of those they are supposed to care for.

Autistic people are being abused daily in these settings, despite evidence to suggest that inpatient units are inappropriate settings for Autistic people. What we are seeing is the systematic practice of locking away people because our society is unwilling and unable to give them meaningful support at home. To my mind this is against the Mental Capacity Act (2005), in particular principles 4 and 5 of the Code of Practice:

“An act done, or decision made, under this Act for or
on behalf of a person who lacks capacity must be done, or made, in his best interests”

Principle 4, Mental Capacity Act Code of Practice

“Before the act is done, or the decision is made,
regard must be had to whether the purpose for which it is
needed can be as effectively achieved in a way that is less
restrictive of the person’s rights and freedom of action.”

Principle 5, Mental Capacity Act Code of Practice

Given that inpatient treatment does not improve outcomes for purely being Autistic, there is a significant and unresolved risk of abuse, and the overt removal of a person’s freedom, I would argue that both principles 4 and 5 have been failed. One might argue that the Mental Health Act (1983) should take precedence which allows for the detention of people who are at risk to themselves or others.

First I would bring your attention to this section of the Code of Practice:

“The MCA should be central to the approach professionals take to patients who lack
capacity in all health and care settings (including psychiatric and general hospitals).
The starting point should always be that the MCA should be applied wherever
possible to individuals who lack capacity and are detained under the Act.”

Section 13.11, Mental Health Act Code of Practice

We have to consider what is being classed as risk, and whether the deprivation of a person’s liberty is necessary. I posit that in most cases, Autistic people remain in inpatient settings because services have no resources to appropriately address their dysregulation in the community.

An Autistic person’s freedom should not be decided by government funding.

To boot, the prinicples of the act itself state that professionals should use the:

“Least restrictive option and maximising independence”

SWLSTG NHS Trust

In what world is indefinite detention in an institution the least restrictive option? Since when does detention be decided by community resources? This is a dangerous precedent to set, it opens up the entire neurodivergent community to facing detention.

When we consider the Royal College of Psychiatrists disturbing statistic that Autistic people are nine times more likely to die by suicide, and combine that with the fact that according to The Nuffield Trust there were 1,357 suicdes in 2019 amongst people who had been in contact with mental health services. Something is going very wrong, and I suspect that, in part, it is the number of Autistic people being detained wrongfully under The Mental Health Act.

It is clear that this situation is out of control. Autistic people should be supported to freely live their lives, not spend years locked in seclusion rooms suffering chemical and physical restraint as a daily practice. Sadly, until such time that our government supplies appropriate funding and resources to services, we are going to continue to witness the systemic mistreatment and killing of Autistic people.

We are Autistic, not monsters to be hidden away from society.

Make sure you check out the CAMHS crisis resource page.

For more of David’s writing, Subscribe to his Substack and check out his books!

David Gray-Hammond 1 Comments
May 7 2023
The troubling tale of CAMHS: A service that is not fit for purpose

When we think of mental health services, I’m sure a lot of images are called to mind. Some people might imagine the institutions of days gone by, where people in significant states of dysregulation under the watchful eye of orderlies, nurses, and doctors. Others might think of therapy sessions, sitting in comfortable chairs with a well-dressed person employing Freudian psychoanalytic analysis.

If you’re an Autistic child, you probably don’t know what to picture; it’s likely you haven’t been given access to the service that is meant to support you. This service is the Child and Adolescent Mental Health Service. You probably know it by a shorter name;

CAMHS

According to the Mental Health Foundation, 70% of Autistic people will experience a mental health issue. This already is deeply concerning. Mind asserts that 25% of the population will have a mental health issue in a given year. Why are Autistic people experiencing mental health problems at nearly three times the rate of the general population?

The Mental Health Foundation offers a suggestion for this as well; lack of access to appropriate support. In this case, CAMHS denial of support to Autistic children could very well be creating the mental health issues they are refusing to address.

According to a study from BMJ Open Online only 10% of the children under the care of CAMHS were diagnosed Autistic. Given that all the statistics that exist only really look at diagnosed Autistic children, we should expect Autistic children to represent the majority of CAMHS service users. However, perhaps the disproportionately high rate of mental health issues amongst Autistic people could be more balanced if we were getting appropriate support in the first place.

I have personally written about the negative effects that CAMHS failures had on me, I do not wish for another child or young person to experience what I did. Lets not forget that The Royal College of Psychiatrists suggest that Autistic people are nine times more likely to die by suicide than the general population. At what point do we acknowledge the role that underfunded and altogether disinterested CAMHS plays in these statistics?

Autistic children need robust support from competent and safe professionals. It’s not enough to simply see our children. These services need to create an environment where it is unheard of to refuse access because of an Autistic identity and lack of staff knowledge. Trust me, we know that highlighting their refusal to see us is just the start of this fight.

Part of the problem lies with the National Institute for Health and Care Excellence (NICE) and their guidelines for co-existing conditions in Autistic people. They are very non-descript and offer little meaningful suggestions for supporting us. Many of the suggested “interventions” don’t have a good evidence base or may even do more harm than good.

We need to create a world where being Autistic is more than an afterthought. There are so many of us out there, and yet society at large treats us like the cryptids one might find in the woodland of North America. Except I am not a questionably blurry image of an unknown creature, I’m a living, breathing human being.

Autistic people have lives, they have hopes and dreams, and we feel joy and sorrow. More than anything, we deserve equal access to the parts of society meant to support us in our lives. But when funds are cut to services like CAMHS, Autistic people are the first to become acceptable losses.

Please sign this petition to help make a difference.

To support my work, you can subscribe to my Substack to access bonus content.

Don’t forget to check out my books!

David Gray-Hammond 0 Comments
May 5 2023
Why Mental Health Awareness Month is failing Autistic people

May is Mental Health Awareness Month. The bitter irony that this comes immediately after the dreaded Autism Awareness Month/Autism Acceptance Month is not lost on me. After a month of fighting hard to be heard over the corporations who monetise our existence, May can feel quite offensive in its positioning of mental health.

We need people to learn about mental health. I will never say we don’t need that. Psychological distress is a heavily misunderstood and stigmatised state of being that threatens not just a person’s wellbeing but also their life. The problem is that when you are Autistic, discussion of mental health can be infuriating.

For as long as we’ve existed, psychological distress has been ignored in us. I often think of my own 14 year journey to get a schizophrenia diagnosis from psychiatrists who would tell me I was “just anxious” and that anxiety was “normal” in autism. Normal. Professionals have come to see our suffering as acceptable, and therein is where the problem lies.

There is no acceptable level of distress. However, the institutions that are responsible for our wellbeing have created the concept of normalised suffering because it shifts the focus off of the structures and power imbalances that traumatise us at every turn. Rather than change the parts of society that do harm, they label the fallout as “normal”.

Autistic people are so often left out in the cold with regard to their mental health. Services like CAMHS and adult mental health services will actively turn away Autistic people. Even those who do manage to access support are often met with cultural incompetency and therapies not designed for them. It feels as though we have to do things for ourselves at a time when we most likely feel incapable.

So, yes, May is Mental Health Awareness Month, but it’s not enough to learn about depression and anxiety. We need to create a culture where those who are most vulnerable have access to good quality support, and are not made to feel like outsiders for not blending with the crowd.

Autistic people deserve a happy life.

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Don’t forget to check out the CAMHS Crisis resource page and join the Discord for community discussion.

David Gray-Hammond 1 Comments
Apr 16 2023
My new book on autism and addiction is now available!

I am really excited to tell you all that I ha e published a new book!

Unusual Medicine: Essays on Autistic identity and drug addiction

This book explores my personal experiences with being Autistic and addicted to drugs and alcohol. It considers my recovery and what was unique about my experiences.

Alongside this, I also bring my professional insights as a person who works with Autistic addicts. I make suggestions on basic changes to services that would make them more accessible, and how we can change societies framing of addiction.

It is currently available on Amazon in most territories, and will also soon be available from some other online retailers.

If you would like purchase a copy, see the buttons below!

UK Amazon Link
US Amazon Link

Also, don’t forget that you can subscribe to my Substack for bonus content!

David Gray-Hammond 1 Comments
Apr 12 2023
CAMHS ignorance of Autistic children runs deeper than refusing to see them

As I have mentioned in previous articles (which can be found here and here), there is an ongoing petition which at the time of writing has over 180,000 signatures. This petition was started because of the ongoing issue with the Child and Adolescent Mental Health Service (CAMHS) refusing to see or support Autistic children and young people.

This in itself seems bad enough, Autistic people deserve support with their psychological wellbeing as much as anyone else, and with the high incidence of trauma among Autistic people, you can imagine that a service like CAMHS should be a lifeline to us. Instead, we are almost always turned away, and our families are left to work it out with us on their own.

The issue with CAMHS and mental health services in general is deeper than gatekeeping and ignorance, however. It comes down to a sort of cultural competency that most professionals lack when they are working with Autistic service users. What is needed is Neurodivergence Competence.

This particular type of competence was conceptualised by Tanya Adkin, which we then wrote about in our co-authored Creating Autistic Suffering blog series.

Essentially, it requires the creation of Autistic safety via a distinct level of competence in Autistic culture, theory, experience, and a broad understanding of the discrimination we have faced both historically and contemporarily. This is what is missing from CAMHS services.

If CAMHS staff had a good understanding of what being Autistic meant, they would not have to turn Autistic children and young people away from their services. The reason they can not work with Autistic people is due to a lack of competence around neurodivergent experience and culture.

While Autistic peers are going to be in a stronger position to provide this kind of care, it is not something that needs to be gatekept to Autistic professionals. Non-Autistic professionals can achieve this kind of competence by engaging in Autistic spaces and accepting the expertise of those who have actual Autistic experience. It’s possible to attain neurodivergence competency by accepting that, at best, your knowledge is second-hand.

Respecting a person’s life and culture can go a long way to improving the way you work with them.

Until such a time that professionals within CAMHS become competent in working with Autistic and otherwise neurodivergent young people, they will continue to fail them. No amount of mandatory training, frameworks, strategies, or specialist services will equate to the importance of this kind of competence.

So please, sign this petition, and help us start the drive to make a CAMHS that is helpful for everyone.

For access to bonus articles and more, please subscribe to David’s Substack.

David Gray-Hammond 1 Comments
Apr 10 2023
On the nature of advocacy

The word “advocate” is used widely in the Autistic community. Within this community it generally refers to a person who publicly speaks out on matters of civil rights. However, there is a much deeper meaning to the word advocate that brings with it an understanding of where the boundaries lie between empowering a person and speaking over a person.

In the context of the law, an advocate exists to not only make a person aware of their legal rights but also to help them understand their rights in a way that empowers them to use their own voice in the fight for fair treatment. While somewhat simplified, this is essentially what statutory advocacy aims to do.

What we see most commonly is community or group advocacy. This is because within the Autistic community, people are generally broadly representing the Autistic demographic and not a particular individual. This differs from statutory advocacy because you are representing a large group rather than an individual. A balance has to be struck between diverse viewpoints and approaches.

Regardless of what form your advocacy takes, it’s important to have boundaries. First and foremost, within the Autistic community, advocates are most likely peers and not external agents. This means that we need to know our limits and protect our well-being. Advocacy is at its most effective when the advocate is in good form.

You need to address your own motivations and drives. Autistic people have a wonderful sense of justice and often a desire to protect others. The problem is that this can manifest as somewhat of a saviour complex. When we are more concerned with rescuing someone than empowering them to help themselves, we can end up stepping on their rights ourselves.

At its core, advocacy should aim to become redundant. An advocate should empower a person or group to be able to speak for themselves. The overall goal is to create a knowledge exchange that facilitates the person a group receiving advocacy to self-advocate.

This is something we forget to often. We are not speaking for people. We are sharing knowledge and building confidence. We are creating environments and spaces that lift a person up and prevent them being spoken over.

As advocates, it is not our job to tell someone else’s story. It’s our job to empower them to communicate their story in whatever way works for them.

David Gray-Hammond 1 Comments
Mar 28 2023
York Health and Care Partnership are going to harm Autistic adults

Let me start by being candid. This is the third time in the past seven days that I have had to write an article like this. We’ve had an expose on the inhuman treatment of Autistic people in psychiatric inpatient units and let’s not forget that NHS Trusts in the south-west of England adding criteria to deny Autistic children assessment. Now, it seems that York Health and Care Partnership are taking some lessons in the same approach but for adult referrals.

I first came across this issue thanks to this article at York Disability Rights Forum.

There are three new, and very extreme, criteria being added to referrals for adult autism and ADHD assessments, that effectively mean the vast majority of assessments will be refused. The referral criteria are as follows:

Immediate self-harm or harm to others. A mental health assessment must have been undertaken and a crisis management plan in place. Risk of being unable to have planned life-saving hospital treatment, operations, or care placement Imminent risk of family court decisions determined on diagnosis e. g family breakdown, custody hearing
From York Disability Rights Forum article

These criteria are unacceptable, and will endanger the wellbeing of huge numbers of undiagnosed Autistic adults, who have been forced to survive childhood without access to their own identity already. The partnership is offering a self-assessment to people who do not meet this criteria which will not be diagnostically valuable, or provide access to things like medication for ADHD’ers. It will also not suffice as proof of disability for the benefits system.

I understand that with referrals skyrocketing, a heavy toll has been taken on diagnostic services. This does not make it okay to deny disabled people access to the validation and support that can come from diagnosis. At a time when the NHS should be demonstrating its importance, it is instead breaking the oath of “do no harm”.

Harmful doesn’t even feel like a strong enough word for this. Autistic people are significantly more likely to die by suicide. This is going to compound that. They claim this is a three month pilot programme. What are the intended outcomes? Of course, this will reduce the number of referrals, but we are sacrificing real people in the name of protecting budgets. Human life does not have a monetary value. We are not a commodity. We are living breathing creatures with complex inner worlds and feelings.

The fact that all of these stories are breaking in the lead up to autism acceptance month is not lost on me. The NHS has made it clear that there is no autism acceptance beyond what their budget will allow. If too many of us exist for them, they will just pretend we don’t exist. This is what happens when universal health care is run on business models. Human lives become less valuable than annual reports that earn you a financial bonus.

I am so done with this. I’m not just taking this lying down, and neither should you. We are a proud and supportive community of neurodivergent people, and we will have the last say on how we are treated. Whether you have a diagnosis or not, you are one of us, and I will fight for you.

David Gray-Hammond 0 Comments
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