Autism from the inside-out

Dr Emma Williams (she/her) is a developmental psychologist at the University of Surrey, whose recent work has focused on the identities and experiences of autistic girls.

Here, she is in conversation with:

Professor Jonathan Green (pictured, top left), Professor of Child and Adolescent Psychiatry at the University of Manchester and Honorary Consultant Child and Adolescent Psychiatrist, Royal Manchester Children's Hospital

Professor Nicola Shaughnessy (pictured, top right), Professor of Performance art at the University of Kent, Principal Investigator on several participatory arts projects with autistic young people and mother of an autistic son

Dr Hannah Newman (pictured, bottom left), a teacher, performer and researcher whose PhD investigated how drama environments can help the diagnosis of autism

George Watts (pictured, bottom right), an autistic academic and self-advocate who was diagnosed as an adult while doing a degree in Autism Studies

According to Professor Jonathan Green, we cannot hope to gain a better clinical, scientific and cultural understanding of autism without reference to the subjective experience of autism itself. He claims there are major benefits to integrating 'autistic phenomenology' into the existing behaviour-focused concept of autism (found in the DSM and ICD) in a way that is systematic, individually sensitive and representative of the diversity of autistic people.

Doing so, Jonathan argues, could encourage a focus on issues of relevance to autistic people; contribute to increased mutual empathy and a common language between professionals and the autistic community; add richness and utility to diagnostic definitions and help identify new care pathways and supportive innovations for healthcare and education.

We recently caught up with Jonathan to talk more about his ideas and what led up to them, including encounters at 2019's Playing A/Part conference, which was funded by the Arts and Humanities Research Council (AHRC) as part of a project investigating the experiences and identities of autistic girls using participatory arts' methods.

Nicola: Jonathan, can you start off by telling us about your memories of the Playing A/Part conference, the collaboration that developed with the autistic scholars you met up with there, and the impact of that on your practice and perspectives? There was a high proportion of autistic scholars and delegates at the conference, three of whom you continued to communicate with, the late Dinah Murray, Dr Damian Milton, and Dr Jo Bervoets. That dialogue has now resulted in the paper, The Human Spectrum: A Phenomenological inquiry within Neurodiversity, in Pathology, which I think is a nice example of researching differently and could be seen as a paradigm shift for medicine.

Jonathan: My memories of the conference are very vivid. To be in a space with mostly autistic people, designed by and for autistic people, was novel to me; certainly in the degree of it.  Immediately I was in a minority position out of the normal range of the way conferences are done. It was stimulating to speak from a clinical academic perspective in that kind of environment, it puts you on your toes. It was a beautiful day, and very hot. Jo, Dinah, Damian and I sat on the grass outside for quite a long time chatting, and we realised that we were a group; it's one of those indefinable kind of things.

Jonathan went on to describe subsequent meetings exploring the experience of living across the autistic/ non-autistic divide, purposefully alternating the roles of 'researcher' and 'interviewee'. 

Jonathan: Jo conceptualised the notion of the 'human spectrum' and exploring experience across this notional divide in a way that doesn't diminish either side. The four of us went quite deep and intimate about our early childhood experiences growing up; what it felt like to grow up autistic, what it felt like to grow up neurotypical. I was interested in the phenomenological component of those early neurodivergent observations and the link between early neurodevelopment and early experience.  

We asked Jonathan to outline for us how he hopes to build on these initial participatory phenomenological self-investigations.

Jonathan: A key question for me is how do we develop a phenomenology of autistic experience which is systematic? There are lots of anecdotes, lots of rich and compelling first-person accounts of lived experience, but I'm talking about a systematic phenomenology, something which goes beyond the single case or single experience. Why am I doing that? Because I think that a lot of autistic people talk about being objectified within the current way of conceptualising autism, and I really understand that. Autism is unusual in not having a phenomenology. If you think about all sorts of conditions in development and psychiatry, and I'm not making the equation but depression, psychosis, mania, all sorts of states of mind if I could put it like that, have a phenomenology attached. They are understood from the inside-out, as well as the outside-in. Autism is not like that at the moment. 

Emma: How might you get to a systematic phenomenology? Could you build it up by taking a grounded theory type of approach where you collect different kinds of reported experience, like with your paper, but scaling that up and seeking out experiences that may be quite different?

Jonathan: Yes, fundamentally, that is the way to proceed, but what I would advocate, as we did in our paper, is a comparative design because when you investigate a certain phenomenon in a group of interest, you find a phenomenon and then you infer it is specific to that group because you only looked at it in that group. It's not until you look at the same phenomenon in other groups that you say, 'Oh, actually, it happens in that group too', so it's not just looking at people who are neurodivergent. We need to proceed rigorously; I wouldn't want to ditch the scientific method on this because it's so helpful. 

George: You spoke earlier about looking at things from a more neurological basis, I wanted to take it to the other side and look at it from a more sociological perspective. What are your thoughts on the divide between autistic and non-autistic people that we see, and things like the double empathy problem? How would you feel about framing that as a cultural difference? Would you see that as autistic culture?

Jonathan: I've talked about Autism as emergent and transactional in my 2022 Frontiers of Psychiatry paper, but to address your question, I think that we all exist in transaction with our worlds both physical and social. When you talk about the sociological in terms of double empathy, the way I frame that is in what I call transactional understanding. In other words, what happens is a result of your experience of me and my experience of you and what [occurs] between us; we both influence each other, the change goes both ways, yes?

So, when Damian framed this notion of double empathy, which has had such wonderful valence, I think that totally meshes. When we talked in the phenomenology project about what it's like to be neurodivergent, autistic, or neurotypical, what we realised from very early on was how much it matters how you are reacted to, particularly as a baby, toddler, and young child. So, what I take from your question is, yes, the way that the social environment is structured and responsive or not responsive, understands or doesn't understand, matters massively to what happens to neurodivergent experience in the real world. It matters to all of us, but if you're neurodivergent and a minority, as it were, within a neurotypical world, that dislocation is massive. 

George: I like the metaphor of autistic people perhaps not being aliens but like that sort of alternative culture which we don't fully understand. I don't appreciate what it's like for someone who is French and grew up in France and has that kind of cultural background. I might learn French or learn about French culture; I'm never going to quite have that lived experience and understanding.

So, in terms of trying to bridge that divide, I feel like a lot of what the Autistic community keeps saying is that we need people, if they don't have cultural competence, they need cultural humility. I wonder how you see that working in terms of practice and clinical settings. We keep talking about the paradigm shifting but is it viable to see clinicians recognising that they need cultural humility, where they don't have the experiential knowledge that an autistic person would have?

And so, there is a barrier there, in the same way that a white clinician wouldn't have the same experience as a black patient, we need acknowledgement of that cultural divide. If we look at things like diagnostic tools, they are adapted to fit different cultures. How might that work? If we acknowledged autistic differences as a sort of distinct culture?

Jonathan: My experience of being at the Playing-A-Part conference was good from that point of view … the experience of being a minority, in a different culture. That was very striking because then you immediately get a flavour of what it might feel like to be in an autistic space made by and for autistic people. For me, it was awareness raising.

I think at another level, good clinical practice in mental health, psychiatry, psychology, in any health profession at an individual level, is about respectful listening. Of course, one is always limited in how much one can get inside the experience of another, but you just try your absolute best. And that's the clinical attitude, yes? But that needs to be informed by as much as one can do in terms of learning. 

The conversation then moved on to a discussion of the benefits and costs of the radical shift, starting in the 1960s, from a classification of psychiatric diagnoses based on (often controversial) psychoanalytic ideas about the cause to a system based on observable behaviours identified through research.

Whilst for autism this had the benefit of moving away from controversial theoretical ideas such as 'refrigerator mothers', the cost was an exclusion of autistic subjective (lived) experience. Jonathan argues that the aim of developing a systematic autistic phenomenology would be to add to, not replace, current diagnostic classifications by integrating detailed criteria relating to lived subjective experiences specific to autism, representative of the diverse population and empirically supported, making future diagnostic schemes look quite different.   

Hannah: What do you mean when you talk about the next DSM, DSM-VI, potentially looking very different in relation to autism? How do you think diagnosis should change?

Jonathan: I think it will look different in terms of the inclusion of subjectivity, and what I'd call phenomenology, as in what aspects of autistic experience are going to be crucial to the diagnosis. If you're diagnosing someone with depression, for instance, you ask about what they feel like, what their mood feels like. There needs to be a shift to more of a holding on to the experience.

Now, of course, if you're working with children, they quite often find it difficult to convey that, so that's an extra challenge for us working in Child Mental Health and Child Development services. With adults, there are non-speaking people and all these nuances to address, but in principle, phenomenology needs to be part of it. We need more of an emphasis on difference not deficit, which includes both strength and difficulty.

Just to be looking for strengths is not going to do it for me either, as that won't pick up things that really distress people, so I prefer to have a language based around difference which is a more neutral term. So, the first step would be a diagnostic process that is much more sensitive to that. That would carry us quite a long way, but I think there's further to go than that.  

Nicola: The final question I wanted to ask is, how can you capture the lived experiences of young people and adults who have learning disabilities, some of whom may be nonspeaking? That's very challenging and complicated, but also very important. I've got experience as a parent of an autistic young person who would be regarded as falling into what is referred to as the 'high-level needs' group.  He has interests and capabilities that have been very important to his wellbeing but trying to find ways of communicating or facilitating his voice in these discussions is challenging.

I think this has serious implications for diagnosis and the discussions we're having. How can we ensure that the voices, perspectives, and experiences of this group of autistic people are being heard and represented? I'm part of a couple of groups now where we haven't been able to nail that because the questionnaires and measures aren't appropriate for these groups and all sorts of challenges like that.

Jonathan: I agree it's a key issue of representativeness, and as clinicians, we've always tangled with this. Very early in my career, I worked in a severe learning disability (SLD) school where all the young people were non-speaking. I felt I had to try and find ways of communicating. It was like one had to just be intuitive and I'd end up just rolling around with them being non-speaking, just picking up behaviours, trying to just release behaviours that would be in some way understandable.

So, I think this is an ongoing issue that some aspects of facilitating communication can help. Visually-based communication boards can do something and are now being used in some situations with eye-tracking technology to aid communication. The use of keyboards is amazing too. Some non-speaking autistic young people are tremendous at using a keyboard rather than speaking.

So, I think we can try and find methods of facilitating communication. And I don't mean 'Facilitated Communication', but systematic methods of aiding communication for non-speaking autistic people. We haven't developed the methodology to do this, and we need to co-construct that probably, but people have done quite a lot of work with non-speaking individuals to try and help and, of course, the behavioural observations come into their own at some level because you can make nuanced observations of behaviour that can be very informative.

I think the procedure that might work is where you develop some concepts of what seems to be 'real' from people who are able to express it more easily and develop those, then you find some ways we can test whether non-speaking people are actually experiencing the same. 

Moving forward, Jonathan plans to work with a group of autistic and neurotypical scholars to create a co-constructed, systematic, representative, and empirical autistic phenomenology, using methods that enable large-scale data capture (for example, citizen science platforms).

The end goal is to re-integrate autistic experience and subjectivity back into our understanding of autism, as well as the development of an enhanced descriptive nosology for autism to include key subjective and phenomenological experiences specific to autism alongside current behavioural and developmental descriptors.