I have been in such a deep and wonderful rabbit hole of shame since re-discovering the topic of shame in late 2024. I say re-discovering, because I first encountered the Shame and Medicine project in 2021, after meeting Dr Sandy Miles through physician health networks. At the time, as founder of Autistic Doctors International (ADI), I took the opportunity to invite Sandy to present at our monthly webinar series for autistic doctors. She delivered an inspiring talk, followed by an invitation to us to write something for the project blog. Of course we will, was my initial reaction, but it didn’t happen back then. Thinking about what it meant to be autistic, in terms of shame, was just too painful. Too hot to even touch. And so we quietly filed that piece in the “maybe in future” projects folder and moved back from confronting our own shame.
Fast forward a few years and the ADI group has grown to include over 1200 autistic doctors worldwide. My research has taken me into the world of autistic psychiatrists. They are the second largest specialty in ADI after General Practitioners, and therefore potentially the most over-represented specialty in the group. The project looks at their experiences as autistic psychiatrists and uses interpretive phenomenological analysis to explore how they make sense of their identities and the implications for their personal and professional lives. My initial focus was on how participants came to recognise themselves as autistic. This was a combination of parents recognising themselves after their children were diagnosed, or during medical training, by seeing themselves described in lectures or in encounters with autistic patients, or even being recognised by autistic patients who said “you’re one of us, aren’t you?”
Recognising themselves as autistic led them to look around at their colleagues and realise that lots of psychiatrists, particularly those working in the area of neurodevelopmental psychiatry, were clearly also autistic. In addition, there were implications for patient care. Recognition of being autistic allowed them to quickly and easily recognise and develop rapport with autistic patients, but they also realized that prior to knowing about themselves, they had missed countless autistic patients, because as one participant noted “my benchmark for ‘normal’ was me”.
The initial paper was well received, although there was a different flavour to the way people were engaging with the work compared to what I was used to after publishing a new paper. Normally, I would have lots of comments, likes, reposts, discussion. This time, it was mostly just likes and reposts. Instead of public comments, I received many emails or private messages about the paper and the difference was pronounced enough that I noticed, although I didn’t truly understand what was happening at the time. Simultaneously I was looking at the data relating to participants seeking or avoiding formal diagnosis, and considerations around disclosure. None of the eight participants, who were all successful senior psychiatrists were openly autistic.
Suddenly, the ‘shame bomb’ dropped. I’d been aware of something dark, unseen and unspoken, influencing the discussions around disclosure but I hadn’t been able to put my finger on what it was. Crystalized by a question about my own ADHD diagnosis which implied that I was hiding it out of shame (which was not the case) but instantly I connected the dots and saw that shame was potentially the driving force behind the disclosure dilemma my participants were grappling with.
At this point I re-connected with the Shame and Medicine project, fell into that deep rabbit hole of shame and read everything I could on the subject. I listened to The Nocturnists Podcast from start to finish in one go and spent countless hours watching online videos from various sources. As I did, I became more and more convinced I was onto something. I reached out to Professor Luna Dolezal, who kindly provided resources and support for what was turning out to be a rollercoaster of a journey. I returned to my data armed with so much new knowledge, and reviewed all my participant interviews, wearing my newfound “shame goggles”. And yes, it was there throughout all the data, suffusing every interview, influencing almost every discussion, almost every single point. Like the proverbial elephant in the room, it was so big and so present that I had missed it the first time I analysed the data.
For me as a parent, the most poignant theme I saw in the data was “generational shame”. Participants who were parents, even though they espoused a neurodiversity affirmative approach towards themselves and their patients, still seemed to have latent neuronormative expectations of their own kids. With all my research and advocacy work fueled by my own experiences as a parent, my shame and guilt as a mother – specifically how I parented my first child before I discovered the neurodiversity paradigm – this became an emotionally difficult task.
The challenges were multiplied when it became apparent that the topic of shame was too hot to handle on numerous fronts. Conflicts arose with friends and colleagues, and an invited talk on the topic of autistic psychiatrists at a Royal College of Psychiatrists Neurodevelopmental Psychiatry Conference was cancelled at the last minute. Six months on, time to process has allowed re-engagement, and I have received a welcome apology from RCPsych, and the recording of my intended talk has been circulated.
As I explored my emotional reaction to these events, I realized that I had been lucky enough to have already made my own personal journey from the deep-seated chronic shame of my earlier life to a place of radical self-acceptance and solid contentment with who I am as an autistic woman. I was grateful for that opportunity, and I recognise that I have no idea how I would have navigated the past few months otherwise. Even so, it took me to the darkest place I have been in many years as I contemplated ending not only my research activities, but all activities, forever. Thankfully I have made my way out through that dark tunnel and can embrace life once more, with a renewed commitment to finding joy in living an authentic life.
The emotional impact was challenging to tease apart. What was it that I was feeling when confronted with the reality that the overarching reason for autistic psychiatrists not sharing their autistic identity was shame? We know that shame is an iterative emotion and that even mentioning the word can evoke feelings of shame in others. But it wasn’t quite that. I was absolutely, confidently solid in my autistic identity, having long since cast off the associated shame. That particular journey started years ago when I realized that although I wasn’t ashamed of my kids being neurodivergent, I was still feeling shame for myself, so I consciously addressed that shame at the time. And it goes even further back, to when I rejected the messages of my Irish Catholic upbringing, which of course was steeped in shame. Even so, I wondered was I fooling myself, was I actually still entrenched in shame but just not recognising that? A moment of enlightenment occurred when I remembered my experience at London Pride last summer. With the same degree of shock that happens sometimes when adults realize they are actually autistic, quite recently I recognised that I was queer. I enthusiastically embraced this newfound self-awareness and was somewhat baffled to be signposted to helplines and support groups every direction I turned. Attending London Pride brought me up close to the shame still felt by many of the LGBTQ+ community, and my emotional reaction at the time was a visceral aversion to other people’s shame. Once again that’s what it felt like – witnessing and touching other people’s shame, particularly those I saw as peers, colleagues, even friends, was deeply painful. As well as shame, it evoked rage. The recognition that they saw me, and by extension my kids, as somehow “less than”, or as being defective, devalued or in a diminished state that they were unwilling to acknowledge also applied to them. It wasn’t quite vicarious shame, which I discovered was a term used to describe the shame felt by parents of autistic kids. What I felt seemed closer to ‘associative’ or ‘affiliative’ shame. Whatever the correct term or framing is, one thing I know is that I do not like it. I do not want my kids to have to feel it.
Presenting my work at the Shame and Medicine Conference, to an audience including old friends and new, was so deeply validating. As I thought about the talk in the weeks leading up to it, I sometimes had an image of myself just standing at the podium, in tears, only able to sob “this is so hard”. That isn’t what happened of course, but the sense of acceptance and understanding in the room was such that if it had, I am confident that it would have been fine.
What happened next was most exciting, one of those rare moments when academics in different disciplines alight on an idea that has the potential to utterly transform future work. Dr Will Bynum raised an intriguing question as he pondered how little he knew about autism – he wondered was “shame” the universal experience which might unite us all. In response I talked about the Double Empathy Problem developed by Dr Damian Milton, which describes the bi-directional, mutual misunderstanding that occurs between autistic and non-autistic people, and I referred to the ongoing disconnect and sometimes conflict between parents of autistic kids and the autistic adult community, which has been termed “the autism wars”. It was an exciting question, with implications which were immediately clear to me – so much so that I think I might have even flapped my hands! This is a common expression of autistic joy, but to be honest, many of us try not to do it in public, and certainly not in front of professional peers. So, I can anticipate a momentary wave of shame when the recording comes out. As I have recently written, “presenting as an autistic doctor brings a tension between appearing ‘autistic enough’ to be taken seriously as autistic and ‘professional enough’ to be taken seriously as a doctor” and moments like these are always challenging. However, I am committed to embracing this challenge and resisting the urge to mask, so I will bravely share it regardless and hope for understanding rather than ridicule.
Naively, when I started to become involved in the autism world, I assumed that parents of autistic kids would be grateful for the insights offered by autistic adults, and I was baffled to realise this was absolutely not the case. Now, wearing those “shame goggles” that I will never be able to discard, the conflict is starting to become a little clearer, and I suspect a large part of my future work will address this issue.
Subsequent discussions have highlighted the possibility that shame may be experienced differently by autistic people, or at least by some autistic people. As an advocacy and research community, we have strenuously and vociferously pushed back against the stereotype of autistic people lacking empathy, with the counter argument that many autistic people experience hyper-empathy instead. And while this is true, I have recently come to recognise – because of my experiences over the past six months – that we may have pushed the hyper-empathy narrative too far and in doing so we alienate and fail to recognise those autistic people who do actually experience low or no empathy. This is a topic which needs so much more research.
In the meantime, I plan to explore the topic of shame with autistic and non-autistic parents of autistic kids; to explore the possibility that it might be the one thing that could bring us together. The challenge of addressing generational shame in a way that does not increase shame is one I am mindful of, but I expect it will be easier with autistic than non-autistic parents. Time will tell.
Once again, I am overcome with surprise – how did I not see all this before? How can it be that in so many of our daily interactions we are essentially “trading shame” yet we do not realise it? Can awareness of this phenomenon lead to better mental health for autistic people? I think so. For quite some time, I have been saying that “the goal is for autistic kids to grow up confidently autistic”. At the back of my mind, the niggling question was ‘yes, but how’. Putting this all together, I am starting to see the outline of an answer and it may be adapting the concept of shame-sensitive practice in healthcare, originally described by Dr Dolezal & Dr Gibson, to parenting as “shame-sensitive parenting”. It’s putting a name and a description to what I have intuitively learned to do since my second child was identified as autistic. I am inspired by Dr Bynum’s encouragement in his fantastic keynote, to take our learning beyond the lab and into spaces where it has practical impact.
From the time I first founded Autistic Doctors International I had a sense of the potential benefit our collective knowledge could bring to the world of autism, and this was crystallized into my recently completed PhD thesis entitled “Autistic doctors: leveraging insider perspectives to improve healthcare for autistic people”. How poignant it is that the most painful finding from this entire project – the pivotal role of shame – might have the potential to offer genuine, real-world benefits to autistic people, in a very practical way? It is an opportunity to understand how shame operates in our lives, not only how we are shamed constantly as autistic people, but also I am struck by the intriguing possibility that our natural autistic communication style might be received as shaming by non-autistic people, and that this might underlie the repeated social rejection we experience. I have no clear idea yet how all this will turn out, but I am excited to explore it with courage and hopefully embrace the inevitable moments of shame as they occur.
Dr Mary Doherty, University College Dublin
Watch Dr Mary Doherty’s presentation ‘Autistic Psychiatrists: Silenced by Shame. An Interpretive Phenomenological Analysis of the Reasons for Non-Disclosure and Avoiding Formal Diagnosis’ at the Shame and Medicine Conference, June 2025.
