Neurodivergent and Under Duress: an Autistic Experience of Medical Consent

Written by Brenton Gray

Content note: includes descriptions of medical trauma.

I stare at my palms. A gaggle of doctors stand at the foot of the bed in the sterile hospital room. My mother sits off to one side.

I’ve got a hole in one of my lungs; the mistake of a junior doctor during a standard procedure. In order to assess the damage, my oncologist explains, they’ll need to insert a scope down my windpipe and into my lungs.

I’ve become desensitised by now to the piercing of needles, to the poking-and-prodding, to the incessant wailing of various medical appliances. Become accustomed to choking down pills and foul-tasting potions, to loose hair on my pillow, to the many tubes hanging off my body.

In the name of survival, I’ve endured it all. None of it was pleasant. I don’t even like being touched.

Yet I know that tube isn’t going down my throat. But the doctors insist. My mother backs them up: “It’s not as bad as it sounds.”

No.

This goes back and forth. I’m sick and exhausted. No energy to argue. I capitulate, I sign the paperwork.

Now: I lie on a stretcher as a doctor looms over me, struggling to feed the scope down my throat. It’s on lockdown. I’ve been sedated, yet I can’t relax. I knew this would happen. In normal circumstances, I’d be delighted to say, “I told you so!”

Instead I’m crying; just the second time in the past two years.

I’ve been in remission from Acute Myeloid Leukemia for a little more than a decade now, and I’ve spent much of that time as an advocate with a number of different youth cancer organisations.

My experience of cancer was unique for many reasons, not least of all because I’m Autistic.

Despite a lifelong suspicion, I was only officially diagnosed in my early twenties, post-cancer, so the extent to which my experience of cancer was affected by Autism can only be identified in hindsight, as speculation.

It may not surprise you to know that cancer sucks for everyone. I’ve met a lot of different people with cancer in my time; I’ve heard many horror stories. We all have them. The trauma of this life-threatening illness doesn’t discriminate for neurology. My evil neurotypical twin from another universe would likely have had the same experiences; borne the same traumas, in the end. Yet the evil twin could have had a radically different experience, too. The impact of Autism on my experience cannot be so easily dismissed.

Our current healthcare system – built by neurotypicals, for neurotypicals – is not well-suited to addressing the varying needs of the Autistic and neurodivergent, and best practice may require a different approach to treatment.

We may not require different forms of treatment for most conditions – yet our needs may demand different delivery of it. In the high-stakes environment of medicine, assuming neurotypicality as the ‘default’ can lead to miscommunication and misunderstandings. In the matter of medical consent, a breakdown in communication could lead to harmful outcomes for the patient.

I trusted doctors and nurses to make the right calls and they did not disappoint, for the most part. I acknowledge the many ambiguities and grey areas in the matter of consent, and it is not my intention to point fingers or make accusations, nor to invite legal action, for that matter – I’m very poor; good luck getting money out of me! – but instead to offer an explicitly Autistic perspective on the issue.

Consent is far more than a simple signature on the dotted line. Consent can only truly be given without duress, when the patient fully understands the implications and outcomes of what they are agreeing to.

A healthcare professional must give the patient all information relevant to the procedure and reasonable opportunity to process it. Consent cannot be considered valid if the patient is not properly informed. Yet the level of understanding can be difficult to assess, even more so when the patient is neurodivergent.

I’m a fairly effective communicator. (You may disagree, having read thus far), but even in optimal conditions it can be a struggle to articulate myself to others. I often fantasise about a gadget that would let me upload my thoughts and feelings directly into other people’s brains, but such a thing doesn’t exist. Instead, I have a voice-box, hands, eyes. These are the best tools I’ve got, yet I’m often frustrated by their inefficiency and my relative clumsiness in using them. Add the unwelcoming environment of a hospital and the notoriously debilitating side effects of chemotherapy into the mix, and my ability to properly communicate and engage with other people starts dwindling rapidly. The doctors could have been speaking in tongues, and I wouldn’t have known any better most of the time. My mother ended up being the middleman in the end, but without her there to explain everything, I doubt I would have been able to keep up. It takes me longer to process information and make decisions than it does for most, even without a brain enshrouded by the smog of chemo drugs.

The medical environment often demands timely intervention; it’s not unreasonable to suggest my capacity to steer my own course was pretty limited. I agreed to a lot of procedures outright that I didn’t fully understand.

I refused the bronchoscopy, however, because I understood what it entailed. Yet adamant as I was, I still agreed to it in the end.

I never felt in control of my treatment. I don’t know that I felt empowered to make any of the big decisions required of me, felt that I ever had a choice to begin with. I just had to suck it up.

The fawn response is heavily programmed into a lot of Autistic people from a very early age. I’ve had a lifetime of being told, in a million different little ways, how ‘wrong’ I am for being Autistic, for not conforming, by neurotypicals and their institutions. I’ve learnt to mask, to perform as a neurotypical.

I never formed emotional boundaries, so much as a picket fence made of toothpicks. I’ve become a people-pleaser; learnt to say, “Yes” when instead I mean, “Whatever you want to hear. Now piss off!”.

But I was just so fed-up. I said no. I shut the gate. I leaned against it with all the weight of my cancer-stricken body. I knew I couldn’t win, not with flimsy toothpicks. The doctors and my mother need not have pushed too hard. I agreed to the procedure, but in an ideal world, I wouldn’t have felt that I had to. I would’ve felt the sense of control to communicate and make decisions on my own terms, and I wouldn’t still be traumatised a decade later.

Trauma is the pain in struggling to make meaning of an experience that defies it, but we cannot make meaning from that which we do not control.

Yet, in facing critical illnesses like cancer, we are forced to relinquish control to healthcare professionals. With meaningful consent, control can be consciously entrusted – but without consent it is surrendered entirely. Even those who dedicate their lives to caring for people can be ignorant to the complexities of neurodivergent experience, which often leads to miscommunication and misunderstanding around consent, with potentially traumatising outcomes for neurodivergent individuals. To improve Autistic and neurodivergent experiences of healthcare, it is worth considering an expanded understanding of consent informed by our unique diversity, and the many challenges we face when held up against neurotypical norms.