Dr Mary Doherty is a Consultant Anaesthetist and autism researcher. She founded Autistic Doctors International which brings together autistic healthcare providers who are dedicated to improving healthcare for autistic people and improving work life for autistic healthcare providers.

Describe what you do in healthcare/healthcare research.

My clinical role is as a Consultant Anaesthetist in a small hospital in Ireland where I provide anaesthesia for adult patients undergoing general and orthopaedic surgery. I also practice Intensive Care Medicine, so I’ve spent the pandemic caring for COVID-19 patients in the Intensive Care Unit. I’ve recently joined Brighton and Sussex Medical School as an honorary clinical research fellow, alongside Dr Seb Shaw, who is the research lead for Autistic Doctors International (ADI). My research interests are varied but all healthcare related. Current projects focus on access barriers and patient experiences in healthcare, both in general practice and in mental health services. More recently I’ve been looking at the experiences of autistic doctors and medical students during medical school and professional life, with a particularly interesting project on the experiences of autistic psychiatrists.

How did you get into it? 

In 2018, AsIAm, Ireland’s National Autism Charity had a wonderful “Autism Friendly Town” project in Clonakilty, Cork which is a beautiful small town on the South Coast of Ireland. The targets included reaching at least half of the local healthcare providers including the local GPs. This was proving difficult so I was asked to help because as a doctor, it’s easy for me to contact and speak directly to other doctors.

I wanted to develop some autism training for the Clonakilty project that was directly informed by the lived experience of autistic people, so I did my first informal survey at Autscape that summer, where I asked “What do you wish your GP knew about autism?” At that point I knew little of our healthcare outcomes and I was horrified to discover the statistics around mental health, medical illness and life expectancy, particularly when my initial study clearly showed some of the reasons why access to healthcare is so difficult for us. That was the start of a journey to tackle the inequalities in healthcare and to raise awareness of autism in the medical profession.

What do you think you bring to it as an autistic person? 

I couldn’t do what I am doing if I wasn’t autistic. My intersectional position as a doctor, but also as an autistic woman gives me insight and access to both medical and autistic communities. We all know Damian Milton and “The Double Empathy Problem” and sometimes I like to think of the gulf between medical and non-medical people as the “Triple Empathy” problem. In medicine, we tend to have a particular outlook and even a language of our own that is difficult for non-doctors to appreciate sometimes, so being seen as a peer can help.

As an autistic person I have a talent for seeing patterns and finding innovative solutions to problems, and I’m also great at making connections and bringing teams together to work on various projects. The hyperfocus, resilience and sheer dogged determination which we are known for has helped me to persist when faced with obstacle after obstacle, both in my clinical career and research.

Have you found that peer support has helped you in your work? 

Peer support has been absolutely vital to me. Finding the autistic community soon after my diagnosis was life-changing. However, I found myself craving connection with other autistic doctors, but I couldn’t find anyone else for a long time. It was obvious to me that there were lots of us in medicine, but it was such a taboo subject that no one talked about it! My personal belief is that medicine selects for autistic strengths so there are probably more of us in medicine (and academia) than in the general population.

So, in 2019 I started a peer support group, “Autistic Doctors International” and soon afterwards a linked group for “Autistic Med Students”. As well as peer support, which has been fantastic, we’ve expanded our remit to advocacy, because many of our members suffer discrimination and lack of understanding and we’ve also become active in research. We’ve grown from an initial 7 members to over 650 in the doctors’ group and almost 200 in the students’ group, with multiple subspecialty and project groups. We meet online regularly and hope to get back to in-person meetings as soon as conditions allow. For many of us it is the first time experiencing a sense of belonging among medical peers.

We’ve had a couple of interesting projects over the last year or two, including publishing on topics such as the neurodiversity affirmative approach to autism, mental health services for autistic people and the harms caused by applied behaviour analysis. We’ve had an editorial about autistic psychiatrists in the British Journal of Psychiatry, and presented posters at the Royal College of Psychiatrists’ conferences. We’ve also published papers on supporting autistic doctors in general practice and anaesthesia. Those are the three most common specialties in the group: GPs first followed by psychiatrists, then anaesthetists are third. Psychiatrists are the most over represented specialty though, considering the relative numbers of GPs and psychiatrists in practice.

We have links with various medical bodies and NHS Trusts which are interested in the area of neurodiversity and many of our members have delivered autism training in their workplaces and more widely. We have a number of exciting projects underway so I’m looking forward to the impact we can have in healthcare.

What change would you most like to see in healthcare/healthcare research? 

The most important task in my view is to challenge the tragedy narrative around autism which is so pervasive across healthcare and autism research. As an anaesthetist I have a broader perspective than most around the heterogeneity of autism, which is the huge variation in the strengths and challenges associated with autism, and I am certain that the way in which autism is framed for each individual will have a profound effect on the outcome. Yet so often, an autism diagnosis is discussed as a tragedy, using words or tone more applicable to a terminal condition. Much of this comes from a lack of understanding of autism, yet in my view it directly perpetuates the stigma around autism and this contributes to our terrible mental health outcomes. I believe a neurodiversity affirmative approach can have a much more beneficial impact, particularly on mental health, and I look forward to more research in this area.

The other area of vital importance is to raise awareness of the health impacts of autism among healthcare providers and to tackle the access barriers. We have ample evidence now about how difficult it is to access healthcare for autistic people, so we need to work on removing those barriers and making healthcare equally accessible for autistic people. The barriers are usually not obvious to non-autistic people, therefore education is important. We published the first part of our Barriers to Healthcare project in the BMJ Open last February and the second part, the qualitative paper is currently under review. We’ve also developed a novel framework to address learning needs around autism in healthcare, and that is under review at the moment too, and we hope it’ll be available soon.

Interestingly, I have found my medical colleagues to be more open to learning about healthcare issues for autistic patients in the context of learning about autistic doctors, so I am using my position as founder of ADl to simultaneously advocate for my autistic medical peers and our wider community in terms of healthcare.

What could employers/society do to support more autistic people working in healthcare/healthcare research? 

We need to change the culture in healthcare so it is safe to disclose a diagnosis of autism. We need to also challenge the erroneous assumption that autism or neurodiversity more widely is linked with doctors being in difficulty. This unfortunate association has arisen because most autistic doctors who are working successfully generally do not disclose, whereas others who might have run into problems or may need accommodations are usually the only ones who are known to be autistic. In fact, our data shows the vast majority of our members are currently working successfully. However, far too many autistic healthcare providers are struggling and experiencing burnout because of the ongoing need to camouflage. Stigma and discrimination are real risks, which is why many of us don’t disclose, yet a more inclusive culture would benefit everyone. The General Medical Council in its “Welcomed and Valued” report states that a “diverse population is better served by a diverse workforce” and as an autistic doctor, my goal is to make that a reality for our community.

Lots of the reasonable accommodations which are often recommended for autistic people working in other sectors just aren’t applicable when working in medicine, so one of my next projects is looking at the specific needs of autistic clinicians in terms of what adjustments are required so we can thrive.

What advice would you give to an autistic person who wants to get involved/start working in healthcare research? 

Make connections with researchers in the healthcare field who are interested in participatory research and seek out teams where it is safe to be openly autistic as an autistic researcher.

Equally, in my view it is important to be able to work effectively with individuals and organisations who do not share a neurodiversity affirmative perspective, because the existing pathology paradigm can best be challenged through mutually respectful collaboration and dialogue.

An important goal is parity of esteem for autistic researchers and this will be achieved more quickly as more of us find positions where is it is safe to disclose and work as openly autistic professionals alongside our non-autistic colleagues.

What tips would you give an autistic person who wants to make positive change for the community. 

Make sure you have a good support base in the autistic community and professional support where required. Self-care is hugely important, because we are of no benefit to ourselves or others if we work to the point of burnout. It’s hard to avoid though, when the need for change is so great and we are passionate about a project. I work regularly with a fabulous occupational therapist who helps me to pace myself and plan my activities, and this has been the key to my increase in productivity over the past year or two.

Patience is required, which is something I wasn’t prepared for at the start of my research journey. It takes years to bring a project from initial conception to the point where it is published and disseminated so it makes a tangible difference to our community. It is also important to maintain a focus on your own particular area of expertise, which is also difficult when there is so much that needs to be done. It’s a struggle for me to say no to interesting projects and campaigns that are outside of the very narrow area where I can make a unique contribution, but I know my impact will be greatest by remaining focussed.

There is intense emotional labour involved in autism research, which isn’t often recognised by our non-autistic research colleagues, or indeed by autistic people who are not researchers. It is painful to read what is written about us in the medical and scientific literature. It is difficult to challenge the currently accepted standards in writing about us. It is soul destroying at times to hear our professional colleagues speak about our community in derogatory terms, even when it’s unintentional. I’ve been introduced as an autistic person to colleagues in autism research and immediately been seen as “lesser”, followed by a rapid change in demeanour when it becomes apparent that I am a doctor. I have left research conferences in tears and cried the whole way home.

This takes courage and commitment and most of all good support, which is why I am thrilled to see the rapidly rising number of autism researchers who are openly autistic. Together our voices are so much more effective as we challenge the stigma around autism, which unfortunately much of the current autism research agenda perpetuates.

For more information about ADI check out our website https://autisticdoctorsinternational.com.

Our publications can be found here https://linktr.ee/autisticdoctors. We try to publish our work Open Access where possible, but unfortunately as a voluntary organisation we do not always have the funds to do so.