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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
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
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