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?