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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?

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.

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.

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.

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.

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