Between Systems: Navigating Mental Health and Substance Use Services as an Autistic Person

Autistic people regularly run foul of services that exist to support us, yet fail to do so in practice. This article lays out some of the issues and gives recommendations on addressing them.

When you're Autistic and living struggling with your mental health or substance use issues, you quickly discover that support is not straightforward. Services exist, but they are often fragmented and built on assumptions that fail to account for neurodivergent realities. What looks like a “pathway” on paper feels more like a revolving door in practice, passing you back and forth between systems that each deny responsibility for your care.

Mental health services insist that your substance use must be under control before they can address your depression, anxiety, or psychosis. Substance use services insist that your mental health must be stabilised before they can offer meaningful support. As an Autistic person caught between these requirements, the message becomes painfully clear; you don’t fit anywhere.

This dynamic is not simply bureaucratic inefficiency, it's systemic exclusion. It reflects deep rooted assumptions about what kind of patient is suitable for support, and what kinds of lives are seen as worth investing in.

The revolving door of services

In Unusual Medicine, I wrote about how psychiatric and addiction services hold power over who gets to be considered treatable. That power often rests on arbitrary thresholds of compliance or engagement that punish the very people who need care the most.

For Autistic people, these thresholds are almost always misaligned with our needs. When I sought help for my own substance use, it was suggested that my mental health had to be addressed first, with my mental health being seen as the source of my problematic drug use. But when I approached mental health services, they were incredibly unwilling to give me meaningful support while i wasn't sober. For a long time a drifted, all of my wellbeing needs being largely unmet. Unmet need is a breeding ground for substance use. I wasn’t unique, many Autistic people report exactly this; being shuttled from one service to another, never landing in a space where the full picture of their life is acknowledged. That is of course if they even get to access services in the first place.

This is particularly damaging because Autistic life is not easily separated into mental health and substance use. Our experiences are relational and entangled. Distress might lead to substance use; withdrawal might exacerbate mental health difficulties. Yet services insist on tidy boxes, silos of care that demand we split ourselves into fragments that no longer resemble the truth.

We cease to be whole beings and instead become individualised case studies.

Silenced by professional expertise

One of the most consistent themes in Autistic accounts of services whether mental health, substance use, or education, is being silenced. Professionals claim expertise over our bodyminds, even when they lack the most basic understanding of Autistic experience.

This plays out in two ways:

• First, our accounts of distress are often dismissed as exaggeration, confusion, or “lack of insight.” Autistic communication, which may be more literal, metaphorical, or embodied than neuronormative professionals expect, is pathologised as unreliable.

• Second, professionals lean heavily on diagnostic frameworks and treatment policies that were not designed with Autistic people in mind. As a result, the lived experience of Autistic distress is rendered invisible.

I have sat in rooms where my own descriptions of psychosis were dismissed, replaced by clinical narratives that made no sense to me. I have been told that my sensory experiences were hallucinations, when in fact they were the familiar intensities of an overwhelmed Autistic body. This silencing extends into substance use services, where our coping strategies are framed solely as maladaptive or challenging behaviours rather than as attempts to regulate intolerable states.

Rather than being seen as a person in need of support, we are described and fictionalised as problems to be solved.

The double empathy problem, as Damian Milton described, reminds us that communication breakdowns between Autistic and non-Autistic people are mutual. Yet services consistently locate the problem in us, rather than in their own failure to listen. Our differences in enpathy and communication are framed as disorder rather than diversity. This perception is weaponised against us, which i discussed in more detail in my chapter of The Double Empathy Reader.

The problem of abstinence

Perhaps nowhere is the mismatch between Autistic reality and service design more visible than in the heavy reliance on abstinence-based approaches. In the UK, the dominant model for substance use recovery remains the 12-step programme. It is presented as universal, but in truth it is deeply inaccessible for many Autistic people.

Twelve-step programmes are built on principles of group confession, surrender to a higher power, and rigid adherence to a shared script. For someone with a monotropic cognitive style, who may struggle with the ambiguity and ritualised social demands of such settings, this can be overwhelming. The sensory environment of group meetings; crowded rooms, unstructured conversations, unpredictable emotional outbursts, can also be unbearable.

Beyond sensory and cognitive access, there is the ideological question. Not all Autistic people see abstinence as the only or most realistic goal. Harm reduction approaches, which focus on making substance use safer rather than eliminating it entirely, may offer more viable pathways. Yet harm reduction remains marginalised, treated as a last resort rather than a legitimate philosophy of care. The insistence on abstinence presents a clear policing of our bodies and limitation of our autonomy. We are forced to quit, or lose our life or freedom.

The insistence on abstinence not only excludes Autistic people, it also sets us up for failure. If the only definition of recovery is total abstinence, then any return to use is labelled a relapse, erasing the progress we may have made in reducing harm, improving safety, or finding alternative coping strategies. I would propose that recovery looks like building a safer and happier life for ourselves and those around us. Not embarking on a journey that was mapped out without our input.

Accessibility as an afterthought

Even when services are not explicitly abstinence-based, they are rarely designed with Autistic accessibility in mind. Appointment systems assume executive functioning capacities that many of us do not have. Waiting rooms are bright, noisy, and chaotic. Assessment tools rely on vague or abstract questions that are difficult for literal or detail-focused thinkers to interpret.

These barriers create what I have elsewhere called a crisis of connection. Services claim to offer support, but the conditions of access are so alienating that many Autistic people give up before help can begin. Burnout deepens, substance use escalates, and distress compounds, yet the system insists it is our fault for not engaging properly.

Such systems create and bolster the very problem they purport to resolve.