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Nov 16 2023
Understanding Autistic people’s relationship with drug use

In the early days of my advocacy my entire focus was on the relationship between being Autistic and experiencing addiction. This was particularly relevant to my life as a person who was early into recovery from drug and alcohol addiction. As my advocacy grew, it became clear to me that two things were needed: 1) there needed to be more research into this topic. 2) addiction was not a standalone issue in the lives of Autistic people, and is intimately connected to the way that society treats us. In this article, I hope to reflect on the current knowledge around autism and substance use.

Important terminology for considering addiction among Autistic people

Social Capital-

This can be seen as the networks of people in a person’s life. Family, friendships, and professionals all connect together to create the social capital that an Autistic person has access to.

Self-medication-

Not all substance use is addiction. Self-medication is any use of drugs or alcohol (when not prescribed by a healthcare professional) to combat difficult aspects of one’s physical or mental health.

Addiction-

I conceptualise addiction as the habitual and compulsive use of a substance despite serious negative impacts in one or more domains of a person’s life.

Understanding the prevalence of substance use in Autistic populations

There is growing evidence that substance use and addiction is a significant issue within our contemporary understanding of Autistic experience. I have previously written about my own experiences of addiction, but over time I have been privvy to conversations about just how prevalent and diverse these experiences are in our community.

Autistic people often use drugs and alcohol to self-medicate. Weir et al (2021) found that Autistic people were more likely to report using recreational drugs to self-medicate their mental health. This resonates deeply with me as my own drug and alcohol use coincided with the emergence of my schizophrenia at the age of 18. Arnevik & Helverschou (2016) and Ressel et al (2020) demonstrated prevalence ranging from 1.3% to 36% among those already diagnosed Autistic with the former also demonstrating that 2% of those diagnosed with a substance use disorder (SUD) were also Autistic. Comparatively, the World Health Organisation states that Autistic people make up 1% of the global population.

From this research we can draw two conclusions. Up to a third of Autistic people have reported issues with substance use significant enough to be recognised by academic literature, while Autistic people in general are twice as likely to be found among those with an SUD diagnosis as they are in the general population. I believe this demonstrates the point I have made repeatedly; this is a significant issue for Autistic people.

Why are Autistic people using drugs and alcohol?

Livingstone (2021) notes that a significant factor in substance use among Autistic people is the camouflaging of Autistic traits. This is poignant to myself; drug use allowed me to exchange my Autistic identity, one that was not well accepted, for one of a drug user. One might ask why being a drug user is better accepted than being Autistic. I would highlight that drug use gave me a shared interest with my peers that was not considered abnormal to discuss with them. By leaning into our interest in drug use, I was able to infodump without boring them.

Livingstone (2021) goes on to further discuss compensation and self-medication and it’s links to decreased wellbeing. While we may compensate for our struggles with drug use, it is ultimately correlated with an increased level of struggle. Again this links to my own experiences wherein self-medication ultimately led to a worsening of my mental health requiring further substance use to cope. It impacted upon all domains of my life and caused long lasting damage to my physical health.

Haasbroek & Morojele (2022) takes this further by commenting on the numerous variables involved in substance use behaviours of Autistic people. They comment on how despite the historical assumption that autism is a protective fact in substance use, it appears that in fact it is correlated with an increased likelihood of substance use. I find this interesting as I have met many professionals who have told me that Autistic people “don’t use drugs”, an exceptionally fallacious statement in it’s on right.

How does further neurodivergence impact drug-use?

Huang et al (2021) highlights findings that “behavioural comorbidities”, with ADHD and OCD getting a specific mention, actually correlate with an increased risk of drug and alcohol use. When a person is AuDHD or has co-occurring mental health issues (such as OCD) it stands to reason that they will self-medicate in the absence of meaningful support, an issue that is particularly topical given the current issues with services like CAMHS in the UK. Lai et al (2019) indicates that co-occurring mental health issues are rife in Autistic populations, making the correlation with substance use even more significant for professionals supporting Autistic people.

Further thoughts on the intersection between autism and substance use

With Autistic people representing such a large portion of substance users, one might wonder why addiction treatment services still do not screen for common neurodivergence upon initiation of treatment. There are numerous moving parts to the success of those in treatment, in particular, the social capital of a person. Ressel at al (2020) notes reduced social capital among Autistic people. This in my mind is reflective of the social isolation that we see within our community, and highlight the importance of community-connectedness in online spaces.

If we consider reduced social capital to be a contributor to minority stress, we can then further extrapolate from Botha (2020) that the Autistic community and it’s various spaces may be the protective factor in substance use that could save lives. Services should not only screen for autism, but also signpost individuals to Autistic-led spaces.

While services themselves need to have a serious think about the literal accessibility of said services, more attention needs to be paid to the positive input of the Autistic community into the recovery of Autistic people struggling with addiction and other substance use related issues. This community saved my life, and I am certain it could save many more. Social capital is available to us, we just need to know where to find it.

David Gray-Hammond 0 Comments
Nov 14 2023
CAMHS Crisis: An Autistic parent speaks out

Since this campaign to change the way that CAMHS (Child and Adolescent Mental Health Services) treats Autistic children and young people started, I have been blown away by the bravery and commitment to making a difference I have seen. Hundreds of thousands of you have come forward with your own stories, laying bare that which makes you vulnerable. I feel as though we are drawing a line in the sand; this year of 2023 is the year where we no longer accept statutory services threatening the wellbeing and lives of our Autistic children and young people. In line with this, an Autistic parent has very courageously come forward to tell me their story of CAMHS failing their child. Please note that the quotes have been anonymised in order to protect the identity of the family.

Autistic young people need services like CAMHS

I have written extensively about the relationship between being Autistic and having mental health concerns. Much like all of these stories of CAMHS, it starts with a young person in crisis.

“My daughter had a major depressive episode for approximately 2 years when she was 14/15, we now know this was autistic burnout.

Young person’s parent

Autistic burnout and mental health are intrinsically linked. If you have read the writing on this website around atypical burnout, you will have some idea of the diverse ways in which burnout can impact us and our behaviour. Despite this, Autistic burnout is still to enter into mainstream knowledge within services that work around mental health. This despite the growing body of research on the topic such as Raymaker et al (2020).

Accident and Emergency departments are ill-equipped to cope with mental health and neurodivergence

“Everytime she wanted to take her own life we were referred to A&E where we would go and then wait up to 48 hours for someone from the CAMHS team to come and assess.

This happened several times. I myself was coming out of an autistic burnout and was in no fit state to fight and battle, i knew nothing about being autistic at the time.”

Young person’s parent

One of the big issues with referring an Autistic young person to a hospital is the communication and empathy divide. Most will have heard of this as “the double empathy problem”, but healthcare in particular offers additional barriers, creating what Shaw et al (2023) refer to as “the triple empathy problem”. This represents the fact that not only is there an issue with Autistic to non-Autistic communication and empathy, but also medical professional to non-medical professional communication and empathy.

To consider it another way, hospitals should not be assumed to be the right environment for an Autistic young person who is experiencing suicidality. CAMHS and other mental health services use this as a stop gap, usually before gatekeeping the young person out of services.

Autistic young people often end up in psychiatric inpatient units

Unsurprisingly, the fallout of CAMHS failing to appropriately support Autistic young people is that a great number of them will end up being sectioned and detained under the Mental Health Act. Detention of Autistic people has been a point of contention between Autistic people and the government; this contention has been further amplified by the recent ditching of reforms to the Mental Health Act.

“It was decided the best place for my daughter was an adolescent hospital in Cranbrook, Kent

I thought she would be there for a couple of weeks but she got a lot worse, self harmed, escaped which got her sectioned and was there in total for 6 months.”

Young person’s parent

Unfortunately, it is not unusual for voluntary admissions to turn into involuntary detention. I would also note as an Autistic person who has been an inpatient that wards often have a supply of contraband as well as being incredibly triggering environments. Self-harm and escape attempts can become a self-fulfilling prophecy. I personally was threatened with the police if I attempted to leave. Much of this would be unnecessary if CAMHS treated Autistic people equitably.

CAMHS and crisis teams

Anyone who has had a mental health crisis and attempted to access support will probably be familiar with crisis teams. In England they are often called Crisis Resolution Home Treatment Teams (CRHTT). They again stand as a barrier between the young person and long-term support from CAMHS. I am aware of many people who have been discharged from the care of CRHTT’s to manage on their own.

“A crisis team visited for a week after to check we were okay. Sent for DBT [Dialectical Behaviour Therapy] therapy (didn’t work), and signed off with antidepressants.”

Young person’s parent

DBT much like CBT and other NHS therapies is only as useful as the therapist and the therapeutic relationship. CAMHS have neither the resources nor staff to give young people a choice of therapists, and as such, if you get a bad one, you’re stuck with them or labelled as “not engaging”. I would also note the generic addition of antidepressants. While they have their place, they are not a solution for Autistic burnout, and if CAMHS knew anything about Autistic experience, they wouldn’t use them as a go to treatment.

CAMHS and the invalidation of Autistic experience

If you’re undiagnosed at the time of accessing CAMHS, you will find that you are constantly invalidated. Everything is an illness, everything is part of your illness. They will convince you that your experience isn’t real. and that there is no better support out there.

“CAMHS involved lots of waiting, gaslighting, not believing, not listening, accusations of bad parenting. If they had listened my child wouldn’t have been admitted to a psychiatric unit. She would have been diagnosed as autistic.

All the wrong support was given.”

Young person’s parent

I would particularly note the mention of bad parenting here. Autistic and otherwise disabled parents are much more likely to fall victim to what Clements & Aiello (2021). This can go as far as accusations of fabricated or induced illness (FII). Parents are being used as the scapegoats for underresourced and incompetent services.

CAMHS wont help Autistic young people

Text reads "CAMHS should not be turning away Autistic children"

“From a different perspective, if she was initially diagnosed as being autistic then she wouldn’t have received any support at all and turned away!”

Young person’s parent

If this campaign over the current CAMHS crisis has bought anything to light, it’s the fact that hundreds of thousands of Autistic young people are being turned away from support for no other reason than their neurodivergence. If CAMHS are not equipped to support them, it is time they became equipped. Refusal to support marginalised groups is complicity in their oppression and deaths. Our children deserve so much better.

What can you do to support the CAMHS crisis campaign?

Sign this petition
Sign this open letter

Supporting your Autistic loved one

Here you will find a collection of information about supporting your Autistic loved ones and the barriers that you may face as a parent, child, or adult. Below are a growing collection of articles and resources. More will be added to this over time. For information on some of the basic knowledge around neurodiversity, try…

Neurodiversity: The Basics

Within the Autistic community, much of the basic theory that exists within neurodiversity studies is taken for granted. For newcomers, it can feel very overwhelming to understand as this body of ideas has been growing for decades. This page aims to take some of the core ideas and explain them to newcomers. What is neurodiversity?…

David Gray-Hammond 0 Comments
Nov 12 2023
The shocking state of autism diagnosis in the UK

Autism is under-diagnosed. This fact has been a truth within our online Autistic spaces for as long as I’ve been in them. Despite mounting evidence that many adults are struggling through life without access to formal identification, many of us face discriminatory and financially inaccessible systems that feel as though they are boxing us out of knowing ourselves. The time has come to deconstruct this debacle, this is the sad state of autism diagnosis.

What is the average age of autism diagnosis in the UK?

Trying to get am accurate number for the average age of autism diagnosis is difficult because much of the research focuses on children and young people (more on this later). As an example, Brett et al (2016) found the median age at diagnosis to be 55 months (or 5 years and 7 months). The problem with this study was that it only looked at children and young people, and approached autism using outdated subtypes.

A meta-analysis by van ‘t Hof (2020) looked more broadly and found the average age of diagnosis to have a mean age of 6 years (the ages ranged from 2.5 to 19.5 years). While this is better, it still fails to capture people who are inevitably diagnosed much later that might have changed the averages. In truth, I have struggled to find any research that provides robust findings on the average age of an autism diagnosis.

Gender and ethnicity differences for age at autism diagnosis

This was once again hampered by an overwhelming research investment into children, with very little robust data on adults. Petrou et al (2018) found that when age of diagnosis was 5 years or more, girls recieved their diagnosis later. For males and females, toileting issues and aggression were associated with earlier diagnosis. On the flip-side, having co-occuring diagnoses was associated with later diagnosis.

Three things stood out to me in the aforementioned research into gender differences among children

  • Gender was treated as a binary. This is fallacious as gender diversity exists among children and young people.
  • Toileting issues and aggression were associated with earlier diagnosis. I believe this highlights the stereotypes that exist within the diagnostic system.
  • Co-occurring diagnoses were associated with earlier diagnosis. When we consider that Autistic people tend to have multiple co-occurring diagnoses, it worries me how many of us may be denied access to our identity.

In terms of race and ethnicity, Roman-Urrestarazu et al (2021) found that while the general prevalence of autism among school age children was 1.76%, this figure increased to 2.11% for Black children. Despite this, I have struggled to find robust research into the average age of diagnosis for different ethnicities and races. Despite this increased prevalence, Tromans et al (2021) found that the identification of autism was generally lower for minority ethnic groups. This may explain the prior research’s finding that prevalence rates of autism in Roma communities is only 0.85%.

Is autism under-diagnosed?

Given the lack of good understanding around BIPOC and gender diverse experiences of autism, and the aforementioned impact of co-occurring diagnoses delaying autism diagnosis, it is reasonable to assume that autism is in fact under-diagnosed.

Under-diagnosis is most apparent when we look at age related differences in diagnosis. O’Nions et al (2023) found huge age-related disparities, with 2.94% of their co-hort aged 10-14 years having a diagnosis, compared to just 0.02% of people aged 70 or over. This same study estimated that out of a population of 56.5 million, 463,500 are diagnosed Autistic compared to a further 435,700 to 1,197,300 are undiagnosed. This means that if everyone in the UK was properly and accurately assessed, we could expect the number of autism diagnoses to rise by up to 258%.

Conclusions

The diagnostic environment of the UK is currently crippled by racial and gender bias, ageism, and stereotypes that lead diagnosticians to believe that autism only exists in aggressive little boys. Added on top of this is the fact that co-occurring diagnoses appear to be delaying autism diagnosis when they should, in fact, be an indicator that autism should be considered as a factor.

To my mind, this issue has arisen from dominant neuronormative narrative perpetuated by neurotypical researchers, most of whom come from a privileged Western culture. In order to level the playing field, we need to be encouraging research and diagnostic practice that is directly informed by not just Autistic people, but Autistic people from the diverse intersections that so many of us exists upon.

The UK is lauded for its universal healthcare. It’s time that the state of diagnosis in the UK reflected that.

David Gray-Hammond 5 Comments
Nov 10 2023
On being the neurodivergent child of an alcoholic parent

This article is an anonymous guest post

I was informally diagnosed with C-PTSD in 2017, aged 41, then formally diagnosed aged 46. I self-identified then was professionally diagnosed Autistic aged 42. I self-identified ADHD aged 44 and diagnosed aged 47.

But, how old do you think I was when I truly believed that I finally understood my own mind? 

I was 31, and off sick from work with depression, working my way through this self-help book: Adult Children of Alcoholics, by Janet Geringer Woititz Ed.D, and making notes in a notebook (I still have this, it is full of signs of autism).

‘This book has all the answers’, I thought at the time. ‘I now realise it is my dad’s fault that I am like this’, I thought, oblivious to the fact that my brother was not the only one in the family struggling to cope with Autism and ADHD, and oblivious to the impact of my dad’s undiagnosed neurodivergence and his circumstances in his formative years. This was only one piece of the puzzle.

So sure was I, aged 31, that my recurring depression was ultimately my dad’s fault, I even asked him to pay for my psychotherapy. Yes, my beloved dad, who had been sober for 20 years then, but still described himself as a recovering alcoholic (and still does now). His reply was something like, ‘it is not that simple, we all have our baggage’.

My late diagnoses of Autism, C-PTSD and (in two weeks) ADHD have led me to completely rethink, to accept how what I know and understand is only the tip of the iceberg, and to reject the moral model of addiction.

Let’s not just de-stigmatise neurodevelopmental differences and mental health conditions, but also addiction, which is a human reaction to circumstances, NOT a moral failing! Addiction does not make us inherently bad people.

And one book cannot hold all the answers. Self-awareness is a journey, not a destination, and we each carry baggage.

David Gray-Hammond 0 Comments
Nov 6 2023
AuDHD and the politics of neurodivergent embodiment

When living life as an AuDHD (Autistic and ADHD) person, we often find ourselves falling prey to the propaganda of Western society’s neoliberalism. The enforced belief that one should be self-reliant and contribute to the capitalist machine is one that leads to the victimisation of most, if not all, of us. It’s easy to get caught in tackling the surface level ableism. However, we must dig deeper and fight the roots of our oppression in order to begin building a society we can thrive in.

The politicised existence of AuDHD people

When considering the nature of being AuDHD and/or otherwise neurodivergent, it is necessary to consider that we are not allowed to simply exist. As a marginalised community, most every aspect of our lives is a political matter.

Government welfare schemes decide if you can afford to feed yourself and your family, government health departments decide if you should have equal access to lifesaving treatments, and if so, how much you should pay. If you break the law, the government dictates your experience of the criminal justice system. If you are terminally ill, the government dictates the decisions you can make around the end of your life. When you are AuDHD, much of your autonomy in life is shaped by government legislation.

The weaponisation of our politicised existence

While your life is being dictated by those with no experience of it, we have the proverbial carrot dangled in front of us. Assimilate and be free. To some this might seem like an attractive option. If we were to just give in, less of our life would be dictated. Again, this is a mistruth.

The politics of the pathology paradigm are built upon neuronormativity. That unattainable summit of neurotypical performance that those in power ask us to achieve. Through the political control and oppression of neurodivergent embodiment, we are given the choice to deny ourselves; live inauthentically and be provided for, or be true to ourselves and relinquish our agency over our own lives.

To be neurodivergent in Western society is to accept that you are an afterthought, an anomaly to be corrected. As much as we threaten the status quo, the status quo threatens us. Thus, the spectre of legislative intrusion into our lives becomes a weapon to force us into the neurotypical box.

The paradoxical nature of being AuDHD

Politicised attitudes towards autism and ADHD are paradoxical in nature. The Autistic person should be less rigid and structured, while the ADHD person should stick to a routine. The Autistic person should socialise more naturally while the ADHD person should talk less.

No matter the contradictions we live with as AuDHD people, one thing is clear. Society wants us to silence our neurodivergence. To speak neurodivergently, be it with mouth or body, spoken or written, no matter the medium, society wishes for our silence.

Liberating AuDHD embodiment

One could be forgiven for thinking that to liberate AuDHD and neurodivergent people requires the removal of ableism from government. It’s more complex than that. Neurodivergent people are victims of complex systems of bigotry. Rarely are we only impacted by ableism. We face racism, homophobia and transphobia, ableism, sanism. This is not an exhaustive list.

To liberate AuDHD’ers living in a society built on colonialism and white supremacy, we must form new foundations to our society. We must build a place where all are accepted, rather than the privileged few in our culture whose existence is not seen as a disorder. We must embrace those seen as a pathology of humanity and empower each other to make something better than what we have currently.

It is not a disorder to be human. The world deserves better than that which the privileged few offer us.

David Gray-Hammond 0 Comments
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