Holly Sutherland on Autistic Communication, Diagnosis and the Neurodiversity Paradigm

Holly Sutherland
Autistic Autism Researcher, University of Edinburgh

Neurodiversity Thinkers Session: Whose ‘Support’ Is It, Anyway? A Critical Look at Supportive Environments

Day 2, 10:30 – 11:20

 

Continuing our series where we meet neurodivergent people from all walks of life, it’s autistic autism researcher & ITAKOM speaker, Holly Sutherland. 

Holly Sutherland is an autistic autism researcher and doctoral candidate at the University of Edinburgh. Coming from an educational background in linguistics, and research background in informatics and science communication, her Ph.D. focuses on social communication in autism – specifically, communication between autistic people, from the autistic perspective. She is interested in the neurodiversity framework, participatory and lived experience-focused research, mixed methods, and bridging the double empathy gap.

Creating environments that are accessible to and supportive of neurodivergent people is a crucial part of neurodiversity principles in action. But what does ‘support’ mean in the context of neurodiversity? What are we supporting people towards – and for whose benefit? In this talk, Holly will challenge how we define ‘support’, and encourage outside-the-box thinking about what supporting neurodivergence can and should mean.

Welcome back to another one of our ‘It Takes All Kinds of Minds’ interviews. I’m here with one of our speakers that we will be hearing from next year, Holly Sutherland. Holly, tell us about yourself and the work you do, and where you’re from.

“Hi, I’m Holly Sutherland and I’m from England but I currently live and study in Scotland. I’m a Ph.D. student, looking at autistic social communication from an autistic perspective.”

And Holly, you are autistic. When were you initially diagnosed and what were the initial tell-tale signs?

“So, I was diagnosed after moving to secondary school where they immediately put me in with the SEND team. They were like, ‘have you considered that your daughter may be autistic?’ The primary school I went to, which was a small village school, had gone, ‘there’s something unusual about this child’, but they had limited provisions for children who had special educational needs. I was very academically precocious, not very good at social interactions, not very interested in the other kids, I far preferred to read, and would frequently upset people and not understand why I’d upset them! With my mother, she would frequently ask ‘why are you angry with me?’, and I’d say, ‘I’m not angry, I’m just tired!’. I was clearly a kid that was doing her best but was not particularly suited to the environment where everybody else seemed to be thriving.”

How does autism manifest on a daily basis; what does it look like for you?

“I think for starters, talking about manifesting autism sort of implies that autism is something that I have on top of being me, as opposed to it describing like….I’m an autistic person. It’s a type of person. You can’t be like, ‘How is your autism today?’ or ‘What is your autism like?’, I’m just me.

I think being autistic has its upsides and its downsides. On one hand, there’s a lot of stuff at my job that I’m very good at because I’m autistic, like coding for hours on end. I could just lose a whole day just getting into that kind of hyper-focus zone and certainly some of the stuff that I’ve picked up to try and adapt to me being in a non-autistic world is, a kind of careful observation of people and trying to pick apart social norms and understand how they work and why they work, that has been really advantageous to the social anthropological bend that my work has taken.

But you know, I do the autistic, like, pre-waiting thing where if an autistic person has something big coming up they’ll spend a week unable to do anything! So, I’m going off to a conference over the weekend and I’ve spent the week feeling like I’m not able to do any work because my brain is like, ‘we have something that’s going to happen soon’ and we’ve got to just sit and wait for it. And that’s really annoying! Or like, the job of social networking and I do not naturally try to social network with people. It’s swings and roundabouts!”

And what are you going to be talking about at ITAKOM next year?

“So, I’m going to be talking about some of the research that I’m about to start doing actually and some theory work I’ve been doing, but the title of my talk is: ‘Whose Support Is It Anyway?’

As we move between a neurodiversity-oriented model for structures that are in place for care of neurodivergent people, including mostly pertinent neurodivergent people with intellectual disabilities, historically that’s been oriented around curing these people or making them normal and as we increasingly understand that that’s not possible, not desirable, not good for the person, that then leaves the question: if we have support in place, what are we supporting people towards? You know, if you have someone who has intellectual disabilities and is in full-time care probably for the rest of their life, what does support look like for them? How do we find out what their life goals are, and what makes a good life for them? And working through some of the issues associated with that.”

Why do you think the concept of neurodiversity is so important to the community?

That’s a really big question!

I think it’s really important—at least for my work—because it gives a more accurate view of what’s going on with these kinds of things. You know, if you start from the point of—there’s one correct way to be and anyone who is not like that needs to be fixed—you end up making a lot of weird assumptions that don’t hold up; and then, when you get results that don’t line up with those assumptions, rather than being like, ‘well I have another paradigm I can switch to’, you’re like, ‘well clearly I’ve done my studies wrong.’

So, starting from a point of, everybody’s different and that’s completely normal, and some people are different in ways that we categorize, as neurodiversity, puts a far higher burden of proof on arbitrarily calling something a deficit.

A lot of my work is looking at autistic social communication, which historically has been framed around things like, autistic people are socially bad at communicating. We have a lot of results now saying that’s probably not the case and probably it’s a miscommunication thing.

And we are now looking back at stuff, like at historical experiments people did, realising the ways in which we interpreted them—because they were using a deficit model, rather than maybe people are doing these things deliberately or maybe this is a different way of doing things— hampered their ability to understand their findings.

So, I think from that perspective it’s really important to have this model where, if you’re going to call something a deficit, you need to be really sure that it’s causing harm to the person and the people around them, rather than arbitrarily categorizing a difference as something that’s bad.”