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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
Jan 30 2023
What purpose does the concept of mental “illness” serve?

As a Schizophrenic person, I see many talk about me as being mentally “ill” and in need of medicine. I do take medication, but for me, medication usage is similar to what one might see within ADHD communities. Medicine is a tool, not a treatment. It allows me to function in environments that are not designed to be accessible to me or my needs. It allows me to live my life without the constant experience of distress, one that I experience without medication because the world is not designed for me.

All suffering is valid, and all neurodivergence can result in suffering. Not because we are ill, but because the world is a traumatic place to live. Neurodivergent people have to face the oppression of all that is different on a daily basis.

“Illness” as a concept within psychological wellbeing a distress is a convenience. It allows professionals to tell us our suffering is unavoidable. If we die by suicide, then we are collateral damage. Victims of a pathology ravaging human kind. If we are “ill” then professionals and leaders do not have to acknowledge their role in a system, causing us distress.

This is what we are actually experiencing. Distress. When we can move forward from pathology models and start to consider that what is happening is a very human experience, we can start to point the blame where it belongs. A world that is violent and terrifying for a huge portion of the population. It is not on us to recover from a mysterious, unquantifiable entity of illness. The world needs to change.

We need to recognise that distress is a human experience, and no two humans have the same experience. Just because my distress looks like the loss of our shared reality does not mean that I am ill. Just because I take medicine that eases my distress does not mean I have a disorder. We don’t assume ADHD’ers to be ill for taking medication. Why do we do it to other forms of medication-assisted neurodivergence?

This ties us up in ideas around med-shaming and toxic positivity. One of the reasons people feel shamed of their meds is because, to them, it feels like an admission of guilt. They weren’t strong enough to survive without becoming ill. It’s not fair to let people feel that way. It’s also unfair to go the other direction and tell people to manage their distress without tools such as medicine. It’s possible to be neurodivergent (and not ill) and still need medication for day to day life.

Neurodivergence is aggressively neutral. It has positives and negatives, and it also has experiences that are not able to be compartmentalised. Truthfully, neurodivergent experience is human experience. The fact that we have to section off different experiences and diagnose them as “illness” or “disorder” fundamentally undermines the neurodiversity paradigm.

Mental “illness” is a deeply flawed concept, and until we fix this, we will not be able to reduce human distress.

David Gray-Hammond 1 Comments
Jan 29 2023
A Schizophrenic woman was dead three years before being found: Here’s why that happened

This article will be upsetting to read.

Click here to read the news story.

Laura Winham was a Schizophrenic woman. I don’t know much about her, but I can imagine what her life might have looked like. Schizophrenia is a peculiar form of neurodivergence. I know from personal experience that this particular neurology can make you question just about every aspect of reality. It’s possible that (like me) she was exhausted from the daily battle to know what  thoughts could and couldn’t be trusted.

Like any neurodivergence, I don’t see schizophrenia as an illness. What we see as the diagnosable condition is actually the manifestation of distress in a neurodivergent brain. It is isolating and scary. When episodes happen, you will give anything for it to be over.

Laura was a human being with a life, a family, and undoubtedly had a lot to offer the world if supported to move beyond the experience of distress.

I think when many people read this story, they imagine it as an unavoidable tragedy. Perhaps they imagine that the problem was with how long it took people to discover her remains. That is not the issue. The issue here is the failure of Local Authorities and mental health teams to provide the support this person needed to survive her distress.

These services are supposed to draw the line. They are the one’s we turn to in our most vulnerable moments. Yet, for many of us, it seems thar we are little more than a nuisance for them. The advent of crisis-driven interventions and defensive practice have meant that people of all ages and backgrounds are dying at the hands of services that couldn’t do their job if they wanted to. The resources aren’t there. There is very little meaningful intervention that services can provide while the system is being defunded and sold off to private interests.

If people want to know why individuals such as myself and Laura have such drastically reduced life expectancies; consider the ongoing distress we experience and the way that distress is compounded by services that offer little to no meaningful support. Laura was very much on their radar, but as you may have heard- you can’t pour from an empty cup.

Her death was 100% preventable. Schizophrenia and other neurodivergence doesn’t have to be a terminal diagnosis. When given adequate support, and when given access to affirmational environments, we are able to flourish. We can experience the joy of human connection and self-development. Sadly, Laura’s development was cut short by inept professionals and the fallout of a government that cares more about profit than people.

This failure will have unending ripple-effects that will go on and potentiate themselves throughout the lives of those who cared for her. This needn’t have happened. This could have been different.

Do not allow this failure to be swept under the rug. Don’t let her death be in vain. Now is the time for action, now is the time to draw a line in the sand, and protect all neurodivergent people from the dangers of a broken system.

David Gray-Hammond 1 Comments
Jan 26 2023
Understanding Autistic mental health in a broader context

We often discuss anxiety and depression amongst the Autistic population. Some such as myself and Autistic and Living the Dream have pushed to get lesser discussed mental health concerns into the zeitgeist, but there is a problem with how it is framed in a more general sense. When most people discuss Autistic mental health, they discuss the individual experiences, I feel it is necessary to look at the bigger picture.

One of the reasons we centre our conversations on individual experiences is because of the medicalisation of acquired neurodivergence. Medical models of psychological wellbeing centre the experience of distress as the defining feature of what is then described as a disordered mind. It teaches is that acquired neurodivergence is the source of our suffering, placing the responsibility on us to adapt to an unchanging environment.

This is where Autistic mental health becomes complicated. In general, Autistic people favour social models of disability and neurodiversity-affirming approaches, and yet we are taught that further neurodivergence is a disorder. It directly conflicts with our understanding of our Self. It partitions off parts of ourselves and teaches us to eliminate them rather than co-exist. What we actually need is to recognise that distress from traditional “Psychiatric conditions” is as much of a reaction to our environment as an Autistic meltdown is.

The environments that exist in our world are inherently traumatic for Autistic people. Trauma alters the way the brain functions, and we are then taught it is our responsibility to recover from that. In truth, the responsibility lies with the environmental factors that cause our distress. You are not suffering because of “illness”. You are suffering because the world is not made with your needs considered. When the world consistently abuses us, crosses our boundaries, and fails to meet our needs, we suffer.

Autistic people need to be allowed to co-exist with themselves. We need a world where the experience of distress doesn’t require us to get better but requires the world to do better. Lack of accessibility and invalidation of people’s lived experiences might well be one of the biggest causes of psychological distress in our society.

David Gray-Hammond 0 Comments
Jan 15 2023
Drug-use and harm reduction: what does it look like?

When we consider harm reduction strategies for drug-users, we often think about education on the safer use of drugs. Things such as safer injection practices and “tasting the hit” to reduce accidental overdoses. While things such as safe consumption rooms and needle exchanges can reduce a lot of the surface level harms, there is a wider conversation about the factors leading to drug-use and the fall out from drug-use once it has initiated.

Here are some of the things that, in my opinion, are important factors to consider when trying to reduce the harms from drug-use.

1. Trauma-informed practice

First, we need to stop viewing trauma through a normative lens and realise that trauma can be experienced from just about any source. As I discussed with Tanya Adkin in the Creating Autistic Suffering Series, trauma is a subjective experience.

Once we have shed our misconceptions of what constitutes trauma, we need to recognise the role that traumatic experiences play in the harms associated with drug-use. Anyone supporting people around harm reduction needs to remember that they are more than likely working with traumatised people.

2. Responsible prescribing practices

The pathologisation and subsequent medicalisation of distress has done many people a great deal of harm. For many people, myself included, it has meant trading addiction to illicit drugs for addiction to prescription drugs. In my case, prescription drugs were more dangerous than the illicit ones due to ease of access.

People don’t like to admit it, but doctors often end up being a person’s main supplier of drugs.

3. Move away from current diagnostic models in psychiatry

Distress doesn’t have to be centred as a problem in the person. In fact, I would argue that it’s necessary to externalise it by looking to the environment, and subsequent experiences of people in distress. We need to consider that if we want people to be safer in the use of drugs, we need to think about what in their life has brought them to using them.

For a good example of this, check out the power threat meaning framework.

It is also important to embrace neurodiversity models. It’s not just Autistic people that are Neurodivergent. Neurodivergence can be acquired in a number of ways, or you van be born with it. It is important, though, to recognise that “mental illness” as a concept has not improved outcomes in psychiatry in over 50 years. Recognising Neurodivergent people in distress will take you much further.

4. End prohibition

The war on drugs is a lie. It has not stopped drug use, and neither has abstinence-based education. Making drugs illegal does not stop their use, it empowers clandestine markets to exploit the distress of vulnerable people, for profit, and increases harms through the lack of regulations around purity and age restriction.

This is a non-exhaustive list. We need to have a wider conversation about racism and other bigotry, socioeconomic status, housing, access to healthcare, and myriad other factors. I do not believe I could do this justice in a short blog.

I hope that we can move into a world where we support people rather than criminalise and institutionalise them. I hope that medical professionals can take a moment to acknowledge the harm their profession has done. I hope that we can all assess our own internalised ableism towards drug-use and addiction.

We may not be able to solve this issue over night, but little by little, we can make the waves that will sweep away the old models and make space to replace them with something that works better for every one. The greatest thing we can do is have a little compassion for others who are suffering.

David Gray-Hammond 0 Comments
Jan 13 2023
Autistic drug-users and the lack of solid guidance in support services

In the UK the majority of mental health support and treatment is guided by an organisation called The National Institute for Health and Care Excellence (NICE). Their guidance sets out how each and every person treated in a clinical setting should be managed, and what treatment modalities are appropriate and inappropriate. Except there is a glaring gap in this guidance, this gap is with regards to the treatment of Neurodivergent drug-users. They have guidance on the dual-diagnosis intersection where drug-use and “severe mental illness” meet, but nothing regarding neurodivergence.

This presents a unique challenge to practitioners working in the field of substance-use; it certainly contributes to the misconception that drug-use is a non-issue for Autistic people. Of course, if it was an issue, why wouldn’t it be in the guidance?

Neurodivergent people exist at multiple intersections of race, gender, sexuality, socioeconomic status, why is it so hard to understand that we often turn to drugs in order to self-medicate the trauma of our improper society? Weir et al (2021) showed definitively that while we are less likely to report using drugs, we are more likely to report self-medicating with what can be considered “recreational substances”. This pulls the plight of Neurodivergent people into the spotlight. Where self-medication exists, the potential for escalation to addiction exists.

Without concrete guidance in place, support for those existing at this intersection of experiences is likely to continue down a path of inadequacy. Some might ask what guidance should look like, while I have some specific ideas, I believe there is a wider need for understanding of Neurodivergent experiences in service providers. Guidance can’t just be drawn up in a “one-size-fits-all” manner, clinical commissioners and others involved in treatment policy need a nuanced understanding of our experiences.

This understanding can only come from co-production of material guidance. Autistic and otherwise Neurodivergent people need to be involved in the generation of guidance and policy. Having worked in service user involvement models, I have seen first hand the vital impact that the voice of those affected has on steering policy.

The truth is that many people writing guidance and policy have little to no experience of the real world effects of drug-use, let alone the real world impacts that drug-use has on Neurodivergent people in particular. Most of them are still rooted deeply in medicalised ideas of neurodivergence. Their are broad issues to consider.

Drug-use is intrinsically linked to socioeconomic status and further marginalisation. When you consider that only 22% of Autistic people are currently in any form of employment in the UK (Office for National statistics, 2020), not to mention the number of us existing in the court and judicial system; Neurodivergent young people represent a particularly large portion of youth offending populations (Day, 2022). We are 7 times more likely to be permanently excluded from mainstream education (Gill et al, 2017), representing 44% of all permanent exclusions (Vibert, 2021).

It seems as though Neurodivergent young people exist on a school to self-medication to prison pipeline, and that is assuming the drugs don’t end their lives before they have begun. The guidance is not only needed, it needs to consider all aspects of life that are contributing to it. We cannot claim that we are engaging in harm reduction while such things are happening. Let us not forget the horrifically traumatic experiences that Autistic people face (Gray-Hammond & Adkin, 2021). It’s a perfect storm for drug-use and addiction. We need guidance from official governing bodies.

It’s vital to mention that neurodivergence doesn’t end at 18. Neurodivergent young people turn into Neurodivergent adults. We need support and guidance across all age groups.

Until NICE and other clinical governing bodies work with Neurodivergent populations to produce guidance that is fit-for-purpose, we will continue to see the premature death and imprisonment of Neurodivergent people who are doing nothing but trying to survive in a system that sets them up to fail. We need guidance across all settings, but especially clinical ones.

Please sign this petition regarding the lack of NICE guidelines

References

Day, A. M. (2022). Disabling and Criminalising systems? Understanding the experiences and challenges facing incarcerated, neurodivergent children in the education and youth justice systems in England. Forensic Science International: Mind and Law, 3, 100102.

Gill, K., Quilter-Pinner, H., & Swift, D. (2017). Making the difference: Breaking the link between school exclusion and social exclusion. Institute for Public Policy Research.

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

Office for National Statistics (2020) Outcomes for disabled people in the UK: 2020

Vibert, S. (2021). Briefing: Five things you need to know about SEN in schools: February 2021.

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 0 Comments
Jan 5 2023
How “mental illness” disempowers the average person

Over the past decade or so, we have seen a surge in the awareness of so-called “mental illness”.

While the concept of telling people you are struggling has served a good purpose, the concept of “illness” has actually disempowered people who have these particular neurodivergences and the people around them.

Human suffering, as it stands, is a heavily medicalised field of study. It has become the realm of doctors and nurses, and this is where we become disempowered. When we experience suffering, we believe that only doctors have the responsibility to remedy that. The average person is made to feel as though they are “out of their depth”.

In fact, the responsibility for reducing human suffering is on all of us. Medication can take the edge off, but to see a true reduction in trauma that litters our society, we all have to do work. Doctors are not responsible for the environments and people we grow up with, and yet we assume they are the answer when we experience suffering as a result of those things.

Society is structured in such a way that we are likely to encounter trauma throughout our lives. It is important to move beyond normative standards of trauma and recognise the subjective nature of this abstraction. What is traumatic for me may not be traumatic for you. It does not make it any less valid.

This is why we need to listen to minorities about minority experiences, ot allows us to root out the traumatic experiences occurring in society, and not just those which we recognise. When we invalidate another person’s experience, we are contributing to the immense suffering that is currently happening in our world.

Perhaps then, it is pertinent for us to take responsibility for the role we each take in the suffering of others and ensure that we are doing good with the limited time we have on earth.

Our psychological well-being is far from being solely the realm of medics. We each play a significant role in other people’s worlds.

David Gray-Hammond 8 Comments
Dec 20 2022
Rat Park: Addiction misunderstood

Johann Hari did a lot for the popularisation of the rat park experiment. This person’s now infamous Ted Talk flung open the conversation that perhaps, just maybe, addiction was not biological in origin. While this attempt to depathologise human experience was admirable, both sides of this argument miss a vital cornerstone that bridges so many gaps in our understanding of addiction.

Rat park suggested that the reason the rats preferred drug-laden water was because of the lack of a meaningful social environment. While I will argue that this certainly plays a role on the perpetuation of addictive behaviours, there is more to be considered.

There have been various retorts, but in my opinion, we need to discuss one thing in particular. We need to talk about trauma.

It doesn’t matter what kind of privilege you have in this world, trauma can set off a domino effect, leading you down a path towards addiction. I am yet to meet any addict who was not trying to hide from pain. Some might argue that not all addicts are traumatised, but I would respond by saying that we need to ditch the normative ideas of what trauma is.

Anything can be traumatic, trauma is relative to the Self, not the external observer.

So, yes, a lack of a meaningful social environment can play a big role in addiction, but I do not believe that is what pulls people into the grasp of active drug addiction. It is what keeps them feeling as though they have no way out. That in itself is a traumatic experience which leads to increased drug use.

This is why we need to constantly be aware of the structures and people that comprise our environments. These components are what scaffold us into active addiction. We respond to our environment, yes, but the factor from that environment that plays the largest role is trauma, not sociality.

David Gray-Hammond 1 Comments
Nov 30 2022
Positive self-identity and Autistic mental health

If there is one recurring theme I come across time and again in my work, it’s that reduced psychological wellbeing in Autistic people is inherently linked to our sense of identity. As Autistic people, we consistently treated poorly by wider society, and we internalise the attitudes that are projected onto us. These internalised negative attitudes, in turn, drive many of the experiences we have that are labelled as “mental illness”.

Of course, I must admit that I have a complicated relationship with the concept of psychiatric malady. I have for some time now advocated for the depathologisation of mental health and recognition of such experiences as the neurodivergence that it is. To read more about that, click here and here.

I am not just Autistic (I’m not even just AuDHD for that matter). I am also psychotic. Not always actively, but due to the nature of my neurology and psychology, certain triggers can result in me losing touch with reality. It can be difficult to ascertain the difference between truth and delusion. This in itself can affect my sense of identity.

Thus, it has been necessary to take time, and use my privilege of good insight, to deconstruct my delusional thoughts and consider their origins. On the journey to understanding the origin and nature of my delusions, however, I have stumbled upon some truths that may be somewhat universal in the world of Autistic Wellbeing.

I know of very few (if any) Autistic people who do not have what a psychiatrist might deem “mental illness”. This is not because there is something fundentally wrong with them. They are not broken. They do not need to necessarily change anything about them. In fact, it is my fundamental belief that labelling us as “disordered” (in the psychiatric sense of the word) incorrectly centres the problem on the individual, when instead we need to consider the environment that the person exists in.

Autism + Environment = Outcome

Back to the point; our sense of identity is largely constructed through our interactions with our environment and the people within that environment. If we wish to give an Autistic person the opportunity to have a positive self-identity, we need to give them an environment that is providing positive interactions.

So, when considering Autistic people who struggle with their sense of identity, we have to take the approach of deconstructing the interactions they jave had with their environment. What are the narratives they are being given? Is their communication with people in that environment allowing them to think positively of their authentic Self?

Once we have deconstructed those experiences, it then becomes necessary to construct a positive identity.

The most vital part of this process is access to neurodiversity-affirming communities. Autistic people need other Autistic people who will help them understand themselves outside of deficit-based models, and outside of medical setting that centres the problem in them.

For me, having access to such communities has been the single most important part of recovering my wellbeing. Research such as that by Monique Botha (2020) has shown that significant importance of community connectedness in the reduction of minority actress, and improvements in our wellbeing. Beyond academic models however, we should be taking humanistic approaches that allow people to feel comfortable in who they feel they are, and not what society wants them to be.

Autistic people, sadly, often do not have access to such spaces. One of the issues with being deep in the Autistic community is that we are blind to the fact that a huge number of Autistic people don’t even know we are here. That is why we have to make our voices heard, and be visible (where we are safe) to wider society. We owe it to the Autistic people out there struggling, we owe it to the Autistic people yet to come.

David Gray-Hammond 1 Comments
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