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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.

It’s OCD Awareness Week and CAMHS are still failing Autistic young people

Obsessive Compulsive Disorder (OCD) is one of the most misunderstood mental health diagnoses that exists. Misrepresentation in the media and everyday vernacular means that OCD has come to be understood as something that requires a meticulous attention to detail and love of order. The truth is far more upsetting for those who are diagnosed with this condition, and Autistic children and young people represent a significant portion of this population. despite this Child and Adolescent Mental Health Services (CAMHS) are failing to support Autistic children and young people with what can be a very debilitating experience.

How common is OCD amongst Autistic people?

“Autism is not a mental health problem, but as many as 7 out of 10 people with autism also have a mental health problem such as anxiety, depression or obsessive compulsive disorder (OCD).”

Hampshire CAMHS

Accordine to Meier et al (2015) people diagnosed Autistic were twice as likely to be additionally diagnosed with OCD, and those diagnosed OCD were four times as likely to later be diagnosed Autistic. Martin et al (2020) found that, of young people ages 4-17 years, 25% of those diagnosed OCD were also Autistic, with a total of 5% of Autistic young people being diagnosed with OCD. In contrast to this is the general population, of whom around 1.5% are Autistic (Baron-Cohen et al, 2018) and 3.5% are OCD (Fineberg et al, 2013). It is clear that OCD and autism have an complex relationship that warrants attention.

If OCD is so common for Autistic young people, how many are being treated by CAMHS?

According to Devon NHS trust 1 in 10 CAMHS patients are Autistic. I have spoken before about how alarming this statistic is (see here). To really capture the fallout of these failures La Buissoniere Ariza et al (2021) found that 13% of parents reported suicidal ideation in their child when autism and OCD co-occur. Please don’t forget that Autistic children in general are twenty eight times more likely to think about or attempt suicide (Royal College of Psychiatrists). OCD is not just a significant issue for Autistic young people, it is threatening their lives. Still, CAMHS are refusing to support these Autistic children.

What are the barriers to CAMHS supporting Autistic young people with OCD?

In my opinion, the biggest issue is professional competence. Myself and Tanya Adkin have written previously about her concept of neurodivergence competency. Despite Autistic children and young people representing a huge portion of the populations that need access to CAMHS, professionals do not have the skills to support them safely and effectively. This presents huge barriers to access to CAMHS because they are either turned away or given treatment that can have life threatening consequences.

If we wish to reduce the rates of suffering amognst Autistic and OCD young people, we need to fight for a CAMHS that not only lets us through the door, but also upskills it’s professionals, and creates an environment within which Autistic and neurodivergent professionals can work. There is more to be said about the hostile environment that has been created for Autistic CAMHS professionals.

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Check out Autistic and Living the Dream and Autistic Realms for more on autism and OCD!

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