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.