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Oct 21 2023
How CAMHS put my life at risk and then discharged me

Being an Autistic teenager is hard. My life was no exception to this rule. After years of trauma and loss, I was at breaking point. Then, one day, my mother came to hurry me up with getting ready for school. What she found was not the resilient and hardworking son she was always so proud of. No, what she found was the husk of her child. Unable to speak or do anything but rock back and forth while sobbing. This is a story about CAMHS.

I was 15 years old, and for the next three months, I would barely be able to leave the house. Let alone attend school.

It transpired that the person who would be the most helpful was a paediatric doctor. I wasn’t seeing him for my mental health. I was seeing him for bowel and stomach related issues. He became deeply concerned with my suicidal ideation and stress levels, and wrote to both my school and my GP to insist I have a referral to Child and Adolescent Mental Health Services (CAMHS) made.

The truth is that at 15 years old, I didn’t see any point to my life. It felt as though suffering were all I was destined for, and I would be better off leaving this world, taking with me the burdensome weight of my pain. I waited only a few weeks for an appointment to be made with a CAMHS psychiatrist.

I have always communicated best through written word and art. So, naturally, I took with me to the appointment writing and drawings that contained some of the darkest machinations of my suffering. If there was a chance for help, I wanted them to see how deep my pain ran. I wanted them to know the truth so they could best support me.

The psychiatrist was not interested. She did not want to see me writing or drawing. She didn’t care for the vulnerability I was laying before her in order to communicate my needs. I felt invalidated and small. Powerless. In her words, I was euthymic (meaning of good mood) and a school refused. She acknowledged that I was depressed but made it clear that if I did not want to take medication, I would be discharged.

The appointment lasted five minutes. I was discharged and labelled a school refused. My mother would go on to be threatened with legal action and fines. I went on to become a young adult, heavily addicted to drugs and alcohol, Schizophrenic, and deeply suicidal. I would not have my formal identification of autism until 6 months after I got sober.

CAMHS showed me then, even in 2005, that they didn’t care about children like me. At the time I thought I was just unlucky, but my time in the Autistic community has show me I am one of tens of thousands of Autistic children who have been failed by this service at some of the most crucial times in our lives.

That is why I am part of the ongoing campaign to hold CAMHS to account. Lives have been lost, and I am lucky mine wasn’t one of them. How can we make a better future for our children when services like CAMHS allow them to grow into adults for whom suffering is an everyday part of their lives?

I will not allow this to continue, and neither should you. We owe this to our children, and all children yet to come.

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David Gray-Hammond 0 Comments
Jul 20 2023
CAMHS is not fit for supporting Autistic young people: Here is the evidence

It’s no secret in the Autistic community that autism is a deciding factor in the success of a young person’s referral to CAMHS. For a long time, Autistic people and their families have been speaking out against the practice of gatekeeping of services and diagnostic overshadowing by professionals. During my time trying to put these failures into context I have found some interesting pieces of evidence that prove the government have known about these failures for a long time. In this article I intend to go over the executive summary of a 2014 document submitted to parliament by Act Now For Autism.

What did the document look at?

The document considered the real life experiences of Autistic people and their families when engaging with CAMHS. Despite the revelation of egregious failures as early as 2014, our government has still failed to address the issue. I have previously covered another one of these documents from a similar time period. Charities have been presenting the government with data for some time now, and yet nothing changes.

The executive summary of the document

I will now go through each point in the executive summary, providing commentary and context for the findings.

“Far too many CAMHS lack the required level of expertise, knowledge and understanding about autistic spectrum conditions. A lack of expertise, knowledge and understanding of autism is preventing the service from being able, to support and to meet the mental health needs of children and young people with autism.”

Act Now for Autism document CMH0205

Sadly this isn’t something unique to CAMHS. Professionals around the world are often taught stereotypical, race and gender biased presentations of autism. On top of this, professionals often lack experience of Autistic culture. In truth, the positioning of autism as a disorder within the realm of psychiatry means that most professionals do not even know of the Autistic community, let alone the fact that we have our own culture and language.

This is a matter of cultural competency. Professionals can not create a safe space to work with Autistic people while they lack an extensive understanding of Autistic culture. This knowledge is vital to the establishment of beneficial therapeutic relationships, a lack of competency in Autistic experience and culture is probably one of the driving factors behind the assertions of gaslighting and invalidation inflicted on Autistic people by mental health professionals.

They simply don’t believe our description of our own thought processes and experiences.

“A talking shop, nothing more. Words but no action.”

Act Now for Autism CMH0205

This is quite a common experience for Autistic people of all ages. In particular it connects to the previous point. It does this because in these talking experiences, Autistic people of all ages often spend more time educating the professional about their experiences and thoughts. This highlights (once again) the distinct lack of knowledge among professionals. Because of these things, professionals often talk a good game while failing to follow through on any meaningful support. The service user is then positioned as “not engaging” in order to shift the blame away from a inadequate service.

“The professionals who operate the triage system for some CAMHS have no understanding of autism whatsoever and so children are not being referred on to professionals who may be able to meet their mental health needs.”

Act Now for Autism CMH0205

The triage system is a point of contention for many people trying to access CAMHS, it is not just a problem for Autistic people. The criteria set forth is usually very restrictive in order to gatekeep access to resources that are in short supply thanks to years of the government under-funding services. In terms of Autistic people and the triage system, however, there are some important notes to make.

Statistics suggest the 70-80% of Autistic children have experienced a mental health problem in their lifetime. Despite this, only 1 in 10 CAMHS patients are estimated to be Autistic. It seems reasonable to assume that this disparity may begin at the triage level. Professionals who do not understand co-occurring neurodivergences will inevitably not understand how alexithymia affects the presentation of one’s mental health or things such as atypical burnout that may again cause an Autistic child to present to services differently to non-Autistic children.

If professionals screening Autistic young people do not have a good knwoledge of autism and Autistic experience, many children and young people will inevitably fall through the cracks.

“An inability to identify real need. Suicidal children and self harming are often not taken seriously by the services.”

Act Now for Autism CMH0205

This is a pervasive issue with professionals often invalidating self-injurous behaviour as a manipulative tactic. This is deeply alarming given that we know Autistic young people are up to 28 times more likely to think about or attempt suicide than the general population. Autistic young people have died under the care of CAMHS and attitudes such as those outlined above are a major contributory factor.

“The service is fixed and rigid and unable to differentiate its provision to meet the mental health needs of children and young people with autism.”

Act Now for Autism CMH0205

A good mental health service will have flexibility and be led by the service user. There is no one-size-fits-all approach to mental health. Rigidity and lack of individual differentiation only reinforces power imbalances between the service user and professional. Such practices reduce the accessibility of the service, positioning Autistic people as refusing to engage when in fact professionals have made the environment hostile by expecting conformity.

“It can take months, or even years before a diagnosis of autism is given.”

Act Now for Autism CMH0205

This situation has only become worse in the years since this evidence was presented to parliament. Nice guidelines state that patients should be seen for a first appointment within 13 weeks of referral. Despite this, 84% of the approximately 190,000 people awaiting assessment are waiting beyond this with waiting times expected to exceed two years. In the meantime, CAMHS will turn away children awaiting assessment for or currently diagnosed with autism. Not only are children not being diagnosed and supported to thrive as an Autistic person, their mental health is being neglected by the very people whose job is to help them.

This is assuming they even refer you for diagnosis, and that you don’t fall foul of parent/carer blame and/or accusations of Fabricated or Induced Illness (FII)

“After diagnosis there is often no more contact with the service at all.”

Act Now for Autism CMH0205

Once again, this comes as no surprise. Post-diagnostic support in the UK is, quite frankly, abysmal. It doesn’t exist. To top it off, autism diagnosis is often used to deny support by CAMHS in favour of learning disability teams that also lack the specific expertise to understand Autistic presentations of mental health. Of course some CAMHS locations use diagnosis to refer you to safeguarding, which can cause all manner of problems for the Autistic person and their family.

“CAMHS are often very reluctant to tell the parents if the team they are seeing with their child has any specialism in autism.”

Act Now for Autism CMH0205

I personally feel that behaviour like this is a significant red flag. If a professional won’t tell you whether they have the expertise to support your child, they probably don’t. You wouldn’t expect a heart surgeon to hide whether or not they have the expertise to perform heart surgery, why do we allow this in CAMHS?

“Parents are physically uprooting and moving to other areas in a bid to access the much needed mental health support that their child or young person requires.”

Act Now for Autism CMH0205

Sadly, this is not a surprising revelation. Mental health provision in the UK has always been a postcode lottery with some areas having markedly better services than other parts of the country. Despite this disparity, people from all areas of the country are reporting the same issues outlined in this article. If your service is so unfit for purpose that people are having to move their life to a different area to avoid you, you have some significant issues to address.

“There is no transition between children’s and adult mental health services and often no adult mental health services to access post 16.”

Act Now for Autism CMH0205

This is a significant issue. For those with an EHCP in place, transition to adulthood is supposed to begin at 14 years of age. Sadly, this is often neglected. In terms of CAMHS, there is often an attitude that we outgrow our struggles by age 18. Adult mental health services are difficult to navigate and just as difficult to access as CAMHS. The lack of transition from CAMHS to adult services endangers the wellbeing of countless Autistic young people.

Conclusion

Do not forget that this document was presented to parliament in 2014. That’s nearly 10 years ago. Nearly a decade later we still have not made progress. Autistic young people and adults continue to suffer and die needlessly because of the failure of services such as CAMHS. The refusal to adequately improve services is, in my opinion, tantamount to criminal neglect of their duty of care. It is only by publicly holding these services accountable that we can ever hope to see meaningful change.

Please help us start the change by signing this petition

Read the full document this article is based on here

Visit the CAMHS Crisis Resource Page
David Gray-Hammond 2 Comments
Jul 18 2023
What being Autistic has taught me about attitudes towards mental health issues

Autism and mental health. There are those who will tell you that the two are separate. Autism is not a mental health problem, with the underlying implication that mental health can’t be the realm of neurodiversity. However, it is not that simple; what we know as “mental illness” has been positioned as such for a reason. Autistic people are privileged that our community is making space between autism and illness, but what of those whose neurology is still widely pathologised?

How many Autistic people have a mental health problem?

Finding accurate estimates on this are difficult for a number of reasons. Chiefly, studies only look at those who have been formally identified as Autistic, ADHD is usually included as a mental health problem (more on that later), and they also do not account for the many Autistic people excluded from the knowledge of their own “mental health issues”.

What I did find was that Autistic people are much more likely to have co-occurring mental health issues. It is important to note this as it sets the scene for why this is an important topic to Autistic people.

How “mental illness” mitigates the benefits of the neurodiversity movement

Autistic people have spent decades trying to liberate themselves from the pathology paradigm. While that work is not complete, we are significantly distanced from pathologisation compared to half a century ago. The pathology paradigm, however, is insidious, and slows our progress in other ways.

Autistic people experience much higher rates of trauma than the general population. Trauma almost inevitably leads to mental health issues. From depression to psychotic disorders; these diagnoses keep us tethered to the systems of the pathology paradigm.

Consider that innocuous name; “mental health”. Health has long been the remit of the medical establishment, which itself is a tool of the pathology paradigm. This creates a dependent relationship between the “mentally ill” Autistic person and the medical world. While we work to liberate autism, we have allowed ourselves to be chained to the very system we seek to escape.

The oppressive systems of the world have done a very good job as well. Even insinuating that “mental illness” isn’t actually illness can bring you backlash from various groups and individuals. The world has just accepted that this very human reaction to suffering is something to be eradicated. We have become complicit in our own oppression.

How do we escape this?

Think back to my earlier comment about ADHD being included in studies of mental health. Neurodivergent people almost all agree that ADHD is not a mental health issue, and yet researchers and medical professionals still position it as such. This, along with the ongoing liberation of Autistic identity, proves that an identity is only a psychiatric disorder while we allow it to be.

Never forget that homosexuality was also in the DSM at one point.

We have to recognise that what is viewed as mental “illness” is acquired neurodivergence. We can’t have this discussion, also, without mentioning the immense monetary value of the concept of “mental illness”, particularly in the Western world. We have created an environment where it’s become okay to take away a person’s right to consent to medication if they are deemed mentally unwell enough.

We need to give our mental health the same treatment that we give our being Autistic. We need professionals to effect meaningful change in our lives. Not just prescribe us medicine. I am not in any way saying that medicine doesn’t have its place. The antipsychotics I take have become an important tool for managing my traits in a world that can not accommodate them. What I am saying is that we need to tackle the issues that cause psychological distress.

Autistic people are weighed down by their own oppression because we have been told it is illness. The blame has been shifted from a neuronormative society and placed onto those injured by its violence. If we as Autistic people want to be free of the pathology paradigm, we need to be free of all systems of oppression.

David Gray-Hammond 0 Comments
Jun 28 2023
Autism and alexithymia: The fallout for our mental health

Autism and alexithymia are two things you might see discussed in tandem quite regularly. In fact, Vaiouli and Panayiotou (2021) found a strong postive correlation beween Autistic experience and alexithymia with Kinnaird et al (2019) finding a prevalence rate of nearly 50% among Autistic people. Considering the very high rates of alexithymia among Autistic people, it is necessary to think about how this might contribute to issues in healthcare settings where professionals are largely trained in non-autistic expressions of emotion.

Alexithymia (according to the Merriam-Webster dictionary) is the inability to identify and express or describe one’s emotions. In other words, an alexithymic person experiences emotions in a way that means they struggle to attribute the internal sensations to descriptive language. It is subset of interoceptive differences which is discussed by Adkin (2023) in relation to their concept of “Meerkat Mode”.

This obviously presents issues with accessing support for our mental health. How can we explain our struggle if we can’t put it into words? Professionals often take us less seriously because if it was “that bad” we would be able to voice our suffering. Unfortunately it is not as simple as this. Even in my own experience, I often struggle to feel the difference between emotions like anxiety and excitement. Happiness and sadness also feel similar to me, and exhaustion is something I often can’t recognise until I am at the point of crisis.

This is a significant enough issue to face as an Autistic adult, but it happens to Autistic children as well. We regularly see Autistic people turned away from services such as CAMHS because they are in no way equipped to help us. Children are naturally less adept at describing emotions, especially the big emotions, and when you throw alexithymia in on top of that it leads to a breakdown in communication that can have life threatening consequences.

I have found myself at multiple points in my life being administered medication that I did not need because the ways I have learned to articulate my very abstract feeling emotions have been misunderstood (accidentally and willfully) by psychiatrists. We live in a world that pathologises our suffering, meaning that we can face horrific side effects to treatments that we might not have needed had professionals been culturally competent with regards to mental health in Autistic people. Tanya Adkin and I have written about the importance of competence previously (Gray-Hammond & Adkin, 2023).

I often ponder on the relationship between my early experiences of not being able to communicate my emotions effectively to professionals and my subsequent years of a drug and alcohol addiction. Honkalampi et al (2022) found a positive correlation between alexithymia and substance use, which in my opinion may indicate a mechanism behind the findings of Weir et al (2021) showing significantly higher rates of self-medicating with recreational drugs among Autistic adolescents and adults. In fact, one of the primary drivers behind my drug use was having control over my emotional experience. I would hazard a guess that drug use is so common in the Autistic community because it allows us to feel a familiar and more easily described feeling.

It is clear that alexithymia is a significant issue for not just Autistic people, but also for professionals working in healthcare and wellbeing practices. The links between alexithymia, poor access to mental health support, and risk taking behaviour are clear. It’s necessary for professionals working with Autistic people to find ways to help Autistic people articulate their emotions rather than to just ignore us or belittle our struggles.

Our lives depend on it.

References

Adkin, T. (2023). What is meerkat mode and how does it relate to AuDHD? https://emergentdivergence.com/2023/06/06/what-is-meerkat-mode-and-how-does-it-relate-to-audhd/

Gray-Hammond, D., & Adkin, T. (2023). Creating Autistic Suffering: Autistic safety and neurodivergence competency. https://emergentdivergence.com/2023/04/11/creating-autistic-suffering-autistic-safety-and-neurodivergence-competency/

Honkalampi, K., Jokela, M., Lehto, S. M., Kivimäki, M., & Virtanen, M. (2022). Association between alexithymia and substance use: A systematic review and meta‐analysis. Scandinavian Journal of Psychology, 63(5), 427-438.

Kinnaird, E., Stewart, C., & Tchanturia, K. (2019). Investigating alexithymia in autism: A systematic review and meta-analysis. European Psychiatry, 55, 80-89.

Vaiouli, P., & Panayiotou, G. (2021). Alexithymia and autistic traits: associations with social and emotional challenges among college students. Frontiers in Neuroscience, 15, 733775.

Weir, E., Allison, C., & Baron-Cohen, S. (2021). Understanding the substance use of autistic adolescents and adults: a mixed-methods approach. The Lancet Psychiatry, 8(8), 673-685.

David Gray-Hammond 6 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
CAMHS refusal to work with Autistic children violates ethical standards created by the House of Commons

If you are unaware of current issues with CAMHS, you can catch up by visiting my CAMHS Crisis resource page. However, the cliff noted version is this; Child and Adolescent Mental Health Services (CAMHS) are turning away Autistic children and young people from their services. This is very unethical, but that lack of ethics goes further.

You could be forgiven for not knowing what “Parity of Esteem” is. Parity of Esteem is a concept set forth by the House of Commons. The basic premise is that it requires an ethical approach that places mental health in equal priority with physical health. This has been important to the world of unschooling and EHCPs as it gives the two legal parity, allowing parent/carers to remove their child from the school environment for the best interests of their mental health.

One might think that this is a game-changing approach to the prioritisation of mental health, but unfortunately, one of the groups avoiding these particular ethical considerations is NHS mental health services themselves. CAMHS is regularly turning away Autistic people, which, in my opinion, gives the impression that Autistic young people’s mental health is of a lower priority.

Now, strictly speaking, they don’t leave you hanging every time. There are satellite services that deal with Autistic and learning disabled children. However, these services are often somewhat indifferent to psychological distress, and due to diagnostic overshadowing treat it as something that we should accept as an inevitability of Autistic experience.

Tanya Adkin and I have recently written about some of these issues. Even if CAMHS threw open their doors to Autistic service users, the infrastructure of that service is not fit for purpose. So, services that do agree to see us very often offer no meaningful support.

This highlights ethical issues over the lifetime of an Autistic person and could even create a CAMHS to prison pipeline. Allow me to explain.

Autistic young people who recieve no appropriate support for their mental health grow into Autistic adults with mental health issues. Mental health issues can result in a need to use emergency services. Here’s where it gets messed up.

There have been pushes for approaches to those who use emergency services due to mental health concerns to be approached with an intervention called “Serenity Integrated Mentoring” (SIM). Under SIM, people regularly detained under Section 136 of the mental health act can face criminal prosecution. This particular approach caused such outcries that NHS England has now distanced itself from the intervention.

This highlights, however, a move towards a world where Autistic people can face criminalisation for mental health issues no one will provide support for. I am certain that other unethical interventions will appear as we move forward. Let us not forget that Autistic people are already significantly more likely to attempt or die by suicide.

Until true legal parity is achieved between mental and physical health, marginalised groups will continue to suffer at the hands of under-resourced services. Never forget, when priorities are underestimated, disabled people are usually the first to be considered acceptable losses.

Help us start to tackle this issue by signing this petition.

David Gray-Hammond 4 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
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
Mar 26 2023
NHS services in England’s South West are endangering Autistic children

Today, I came across an article by The Guardian that raises a life-threatening issue. It seems that due to a 350% increase in referrals for autism diagnosis amongst children since the pandemic, NHS managers have moved the goal posts and added extra criteria to meet before a child can be referred. Unless a child meets these criteria, they will not have access to diagnosis, with the irony being that early diagnosis could stop them from meeting this criteria; which indicates an extreme level of suffering to be required before getting the admittedly already pitiful support that is available.

Let’s look at the criteria, as discussed on the Sirona Website:

Who can be referred? Children and young people meeting the following referral criteria can be referred : Children and young people whose education placement is breaking down despite appropriate support (including those who are NEET – not in education, employment, or training – and those at risk of permanent exclusion, transfer, or long period of school refusal). This may include children and young people who need an Autism diagnosis to access the required specialist provision.  Children and young people whose family unit is at risk of breakdown despite support from appropriate agencies (parents/carer and social care are unable to meet the children and young person’s needs, leading to risk of child protection proceedings and/or child needing alternative placement). This can also include children whose adoption is at risk of breaking down.
Children and young people in care or on a child protection plan for whom an assessment is needed (e.g., to inform placement planning). Children and young people who are open to Children and Adolescent Mental Health Services (CAMHS) with severe and enduring mental health difficulties (i.e., high risk to self or others) where an autism diagnostic assessment is required to support their formulation and care. Or children who are not open to CAMHS but are presenting with a serious risk to self or others (e.g., risk of exploitation, significant self-harm, dangerous levels of aggression towards others). Children and young people who are involved with youth offending services and/or are engaged in repeated offending behaviours. Children with very low levels of communication where the difficulties are likely to be associated with autism (usually Early Years)

This means that we are expected to wait until a child or young person is already in crisis before they will even refer them for diagnosis. It’s tantamount to negligence and threatens the wellbeing of a demographic that is already significantly more likely to die by suicide.

People on Twitter are also speaking out against these unethical criteria.

Tweets like this highlight the fatigue so many of us feel from trying to make sure Autistic people are supported.

What are we supposed to do when those who are supposed to support us only choose to do it when they are given no other choice? How do we fight back against the brazen demonstration of how inconvenient our existence is considered?

Autistic children and young people will end up in crisis and maybe even die due to rules like these.

This is not ethical, and it is a failure to ensure reasonable adjustments. It is an overt indicator that equality laws can be broken when it’s too inconvenient to follow them. The NHS needs to put a stop to this before more lives are lost.

We are Autistic, and we deserve to be consulted before such inhuman criteria are created.

For further reading about the failure of the NHS to support and protect Autistic people, please check out these articles:

CAMHS nearly killed me, and it’s not okay.

CAMHS in crisis: The systemic failing of Autistic people

Autistics Incarcerated: The dark underbelly of the NHS

Here is a petition to reverse these criteria changes

David Gray-Hammond 1 Comments
Feb 26 2023
CAMHS nearly killed me, and it’s not okay.

I don’t talk about my childhood much. Partly because I don’t want to upset my readers, but also because it is not my story alone to tell. The people who did so much harm to me as a child also caused harm to others that I love immensely. A sad part of my life is that as a result of the harm done to me, I made choices in my life that hurt those people I loved. I don’t blame myself, but I also haven’t quite reach the point where I can release myself from the sense that I need to make reparations.

Something that I think is really important to talk about however, is the way I was failed by professionals who very well could have turned my life around. I am happy with my life now, but I do wonder what it might have looked like had I not been left to drown by a service that was meant to be my saviour. That service was the UK’s Child and Adolescent Mental Health Service (CAMHS).

The worst part isn’t even that they ignored my mother’s pleas to assess me for autism. It’s not the time that they tried to put me on Ritalin after a five minute conversation. It’s the way they were nearly complicit in my surrender to the suffering that I experienced. I’m a suicide survivor, and CAMHS didn’t care.

I came to them, beaten and bruised, I laid before them my trauma, my pain, my isolation, my disdain for every aspect of myself. I told them that I couldn’t cope, that I was scared to wake up each day. I told them things about my past that I can’t bring myself to say publicly, even to this day. I was met with silence. Cold, uncaring silence. They did nothing. They labelled me a school refuser. They still refused to assess me for autism.

Is it any wonder then that I found solace in the steel trap of drugs and alcohol? What can one do in the face of unending suffering than desperately scramble to drown out the noise. The noise was inescapable. The voices in my head would scream at me daily. I was paranoid and distrustful of everyone, even those that I loved dearly. CAMHS allowed my psychological wellbeing to deteriorate to the point that I could no longer cope with existing. I resigned myself to an early grave.

Some might ask why this is relevant, I am a man in his thirties, surely this was a long time ago?

No.

This is still happening. Everyday, thousands upon thousands of families are forced to watch on as CAMHS allow their children to suffer. If you want to know why so many Autistic people die by suicide, start by taking a look at this (dis)service. CAMHS are complicit in an untold number of deaths. Each data point in those statistics represents a story untold. A future unrealised. With each child lost by the negligence of those meant to help them, our future becomes a little bit darker.

I am happy today, but it hurts. It hurts to know that my child and millions like them do not have this service in a good working order should they need it. I want a world that protects my child and seeks to heal wounds and change worlds. It’s the least they can do for our precious children.

My name is David, and I’m a CAMHS survivor.

Please help us change children’s lives by signing this petition.

David Gray-Hammond 10 Comments
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