So I’m doing some research…
Yeah, I am! I’m doing some research.
Specifically, I’m currently in the early stages of the process of doing a Health Research MRes, and my research project is:
“What is the effect on both patients and clinicians when autistic patients receive mental health support from autistic clinicians?”
I’ve been working hard on finalising my research proposal, and have a couple of gnarly essays in front of me, then an ethics approval process, before the fun(!) actually starts. Which means that everything I write about it has to be super polished, referenced and professional sounding. As an early-career and first-time researcher, I feel a lot of pressure to be perfect, as well as a lot of uncertainty about what I’m doing and if I’m doing it ‘right’.
So I thought I’d use this space, my own space, to express some part of why I want to do this research. Not the polished, referenced version. The real version.
In my last job in the NHS, I was an ‘openly’ autistic (and ADHD) person, working as a clinician in a generic (eg general) mental health community service. Meaning that I was surrounded by other clinicians who weren’t the same as me. Clinicians who weren’t autistic, or didn’t know they were, or even who did, but weren’t open about it, especially not to their patients.
Whereas, a core part of my job (at least from my perspective) was to be open with my patients about my autism. Because I had to design this job from almost scratch, knowing that the aim was to help neurodivergent patients to get more out of the service than they had been previously. This was framed, initially as me helping patients to “manage their autism” so that they could “engage better” with the service. I quickly threw that concept out the window. It was going to have to be the service that needed to change, to better engage with these patients, to manage it’s ignorance about their autism. Otherwise I would be gone pretty quick!
I quickly decided that, in working 1-1 with these patients, it would be vital for me to be ‘openly’ AuDHD with them AND with my colleagues. So much so that I bought a couple of pin badges “I am autistic” “I have ADHD” and kept them on my lanyard. I didn’t think twice about how that would feel for me, particularly as someone with relatively new autism and ADHD diagnoses myself. I simply (autistically) knew that if I wanted to ‘engage’ neurodivergent patients, my biggest ‘skill’ would be making sure they knew I was like them. And I knew that the best and quickest way of getting my colleagues to be more understanding of neurodivergence would be to be visibly AuDHD in front of them. That worked less well, the less I masked at work, unfortunately. And it definitely affected me feeling safe and ‘part of the team’. My first week in the job, I introduced myself to a colleague and mentioned I was autistic. They replied:
“Oh! I didn’t know autistic people could do this kind of job!”
So, it was tough. I felt like an outsider much of the time. I didn’t get jokes. I couldn’t chat and work at the same time. I had to explain, over and over, things that any AuDHDer would know instinctively. I can’t count the amount of colleagues who, in hushed tones, confessed to me their suspicion that they might be neurodivergent, their worries that being diagnosed would hurt them professionally, their questions on where to go for support. To be fair, I found that part pretty rewarding. None of those colleagues ever ‘came out’ to the team though.
With patients, things were easier. In that they understood (mostly) how to communicate with me, and I them. Any time we misunderstood each other, we would quickly identify and explain it. We would sit with the overhead light off, stim together, take each others’ questions literally, allow time for processing questions before answering.
It was harder in some ways too. Mostly emotionally. I would feel so much of their sadness, their despair, their anger, their confusion, that it would overwhelm me at times. I came away from appointments emotionally drained, feeling both my own and their emotions. Seeing them grieve for all the things they’d lost, either due to late-discovery of their autism, a lifetime of discrimination, or years lost to wrong diagnostic labels and treatment, hit harder, given I was still going through my own grieving process. Their stories of feeling like an alien, of loved ones rejecting them, of wishing they could be ‘normal’ were all much too relatable to me. And anytime anyone was detained to a mental health ward or had to spend time in A&E my heart broke, knowing that those settings were nothing short of torture, that they would inevitably come out with more trauma than they went in with.
So much of my time with my patients was spent apologising to them for what they’d been through, for how the system had treated them, for things the callous psychiatrist, the frantic A&E nurse, the ignorant therapist had said or done to them. For the PIP system and how it systematically breaks people. For there being no supported housing available for autistic people. For GPs having no understanding of their chronic health issues, issues that are much more common in autistic people. It felt meaningful, and real, and important. It also broke me, over and over again.
Another weirdness, which I hadn’t at all anticipated, was that I was now a role model. A double role model, actually. To my colleagues, I was an example of what autism looks like - a misleading example, as, to even be able to be in the office at all, I had to mask my ass off. So I was constantly pointing out to colleagues that they were only seeing half of the picture - the other half being me after work or on the weekends, too exhausted to do anything but sleep, in chronic pain, unable to socialise outside of my home/1-1, needing a PA to cover basic household tasks and frequently wobbly, to say the least, mental-health wise. But seeing is believing, and I don’t think most of them ever really understood how fake what they saw in the office was.
To patients, I was a different kind of example - a Role Model. With capital letters, because it’s true. I first realised this in a previous job, when a teenage patient with ADHD told me they would never be able to do a full time job because they had ADHD. I responded, a bit too quickly “well, I have ADHD, and I’m a nurse”. Little bit childish, maybe. But the way their face lit up will never leave me. In one sentence I had taken their perception of what and who they could be and flipped it completely on its head.
In my next job, ‘openly’ AuDHD and suddenly I had patients beating themselves up for how much they were struggling because of what they perceived me to be. I didn’t realise until one of them said it directly to me:
“I’ll never be able to work full time, like you”
Oh. I suddenly realised what I’d been doing to my patients all along. Simply saying I was autistic and had ADHD didn’t tell them that I struggled, all the time, with basic life stuff. That I needed help daily. That I might have been working full time, then, but that as soon as my PIP tribunal was sorted, I would be working part time, because working full time had caused my physical and mental health to massively deteriorate to the point where it was go part time or quit working altogether. It didn’t tell them that I had my own mental health history, or that the only way I could do this job was because autism was my special interest. It didn’t tell them anything about my struggles or my reality. In fact, what I was subconsciously telling them was more along the lines of the bullshit I hated; the “autism shouldn’t hold you back” or “you can do the same as everyone else” or “ADHD is my superpower” kind of crap.
From then on, I was more careful. I shared small bits of information about my struggles, not too much, but enough that hopefully my patients understood that I wasn’t expecting them to be able to live in the same way as a neurotypical person. I tried to normalise autistic thinking patterns, AHD focus styles. I repeated, so often it became almost a mantra:
“What you see here, for an hour a week, in our appointments, is not what I’m like most of the time.”
It helped, I think. Hopefully, patients felt less bad about not being able to go to the pub with friends when I shared that I wouldn’t be able to do that. Or about losing a whole day to playing a video game, when I said that was sometimes the case for me too.
There were lots of things about myself that wouldn’t be professional for me to share, but what I could share, I did, to show my patients that a happy and full life doesn’t have to look like neurotypical society’s expectation of what it should be.
I asked for feedback, when I stopped working with a patient, and, more than anything else, I was told how important it was to have an autistic clinician. How much easier it was to communicate with me than with other clinicians. How they felt they didn’t need to explain everything to me, when normally they did. And how it made them feel less alone to know that there were people working within mental health settings who understood.
That’s the real reason why I wanted to do this research. Because if that was the feedback I was getting, from basically all of my patients, maybe other people felt the same way. Maybe it’s worth finding out.
I wonder what kind of experiences the patients and clinicians I’ll (hopefully) recruit to my study will share with me. I have this theory that most of the autistic clinicians I talk to won’t be ‘openly’ autistic to their patients, so their experiences might be quite different from mine. But who knows, it might be more common than I think.
I’m excited to find out. I hope that what I find out is interesting, even important. I’m worried my finished work will be interpreted (by, I imagine, the Daily Mail etc) as ‘proof’ that autistic patients should only have mental health support from autistic clinicians - in other words, for segregation. That’s not what I want. I’m not sure what it is that I do want. But I suppose part of it, at least, is to contribute something towards our understanding of autistic people and autistic mental health.
Later in my research career (and it still feels surreal thinking of myself as someone who’ll have an entire career in research) I can work on the bigger problems, the things that break my brain. As my supervisor repeatedly tells me, my current study is a starting point, an exploration. More about teaching me how to do a study, than anything else. But I do hope it contributes something. Because I need things to get better for us, I really do.
