Let's Talk Neurosense: the psychology of neurodiversity

Aleida Verhoeven understands disability from many angles. She’s autistic herself and also has other disabilities. But in addition, she works in Australia’s National Disability Insurance Scheme as the equivalent of a case manager, primarily with autistic people.

She tells us about the situation in Australia, where, as she puts it, they have some of the highest disability spend in the world, yet some of the poorest outcomes. We discuss the reasons why that might be, and Aleida explained how she sees a misalignment between what autistic people need and what is being provided.

Aleida has some very forthright opinions and this conversation was an insight for Dani and I into how things work over the other side of the world. We hope you enjoy this episode.

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Richard has spent his whole career working with autistic adults. He initially worked in a diagnostic assessment service before moving into his current role in an intensive support team for autistic adults. He is a prolific poster in online discussions about neurodiversity, and has written about some of this on his Substack.

In this interview, Richard explained how his experience has enabled him to look beneath behaviour and the formal diagnostic criteria to identify underlying processes common amongst autistic people. He tells us how he thinks that those who criticise concepts such as masking miss the serious impact on autistic people’s lives.

He talks about how he feels that better awareness and less stigma has enabled more people to come forward for diagnostic assessment, and how he sees this as a positive change.

Join Naomi, Richard and I as we wrestle with some of the big questions, such as whether masking is unique to autism, the specificity and reliability of an autism diagnosis, how funding and resources should be allocated and whether we should be talking about diagnosis at all. We certainly don’t agree on everything, but I do think we manage to hold space for different perspectives and put some of the popular ideas in neurodiversity discourse under the spotlight. Do let us know what this episode brings up for you.

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When Chrissie’s son Daniel started school, the teacher asked her on first day why they had not told her that he had an emotional disability. Later, he explained that he was terrified of being inside tall buildings. He was scared and so he hid under tables.

Daniel found school expectations hard, and school found it hard to manage Daniel. The school needed extra support and wanted to refer him for a diagnostic assessment. Chrissie and her husband Paul could see that everyone needed more help and extra funding - but they didn’t want to give Daniel a label that he would have no choice but to carry with him for life.

Since then, Chrissie and her family have been navigating education and social systems that increasingly understand the world in what they consider to be binary or overly simplistic ways. She describes here the difficult position of trying to be an appreciative friend to other parents and thoughtful psychologist whilst opposing the languages and practices that risk defining children and reducing possibilities for wellbeing and change.

Daniel is now in his twenties, and Chrissie tells us how they have found ways through the system for him. She also told us how she thinks this has been for Daniel, and how it has affected how he sees himself. She is talking to us with his consent.

This is a really unusual story and we hope you’ll find it interesting.

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Does it help, being a psychologist when your children have additional needs? Or can it make things more complicated?

This week we are delighted to talk to Rosie Gilderthorp. Rosie has worked in forensic and learning disabilities services and she now runs the Psychology Business School, which helps other psychologists to find their way in private practice as well as working clinically. Two of her children are AuDHD and the third is in the process of assessment. She is a military wife, which means that much of the time she is parenting solo. These different strands of her life interact and inform each other, sometimes in unexpected ways.

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In this honest and wide-ranging interview, she tells us about her professional and personal journeys, and how being a parent to her children has changed her life and influenced her career. She tells us about her concerns about the concept of masking, and how she thinks it can be misused to dismiss children’s distress.

Rosie writes: If this conversation resonated, you can find more about me on Substack. Each week I share the unfiltered reality of raising AuDHD kids alongside practical psychological insight you can actually use.

Rosie’s book on building a life you love through the challenges of parenting children with additional needs You Are Doing Enough: a book for parents of neurodivergent children is now available for pre-order.

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Guardian readers were asked last week to ask themselves if their parents might be neurodivergent. Apparently up to 97% of autistic adults over the age of 60 are undiagnosed, and the Guardian is here to guide their adult children in how to broach the subject. That is, by our calculations, 194,000 people.

So what does this mean? What is the research this is drawing on and what are the assumptions being made? Would we all be happier if everyone who could receive a diagnosis had one?

In this new quick turn-around episode, Dani and Naomi unpack the headlines and ask whether we should all be encouraging our parents to get onto a neurodevelopmental waiting list.

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This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit neurosense.substack.com

Have you noticed that the way some people talk about neurodiversity has changed? Have you heard that diagnostic language is violent, that neurodivergent people are oppressed by neuronormative standards and that it’s ableist to suggest that it’s preferable to be non-disabled, if that’s an option? Have you noticed strange similarities in the way that disability, race and gender are discussed, and wondered why that might be?

Our guest this week is Helen Pluckrose, a social and cultural commentator and co-author of the bestselling book, Cynical Theories: How Activist Scholarship Made Everything about Race, Gender and Identity - and Why This Harms Everybody and she’s here to explain what’s going on from her perspective.

In this fascinating interview Helen explains how the dogma of critical social justice theory has spread through disability studies and affects the way that many think about and research neurodiversity. She traces the evolution of these ideas from postmodernism to activist academic circles today - and from there into online conversations. We discuss the kernels of truth which underpin these narratives, and why she thinks that activist scholarship has the potential to do harm. We bring it back to neurodiversity and what this means in real life.

Helen has many bold and interesting ideas and we can’t wait to hear what you make of them.

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This week’s guest is Dr Alison Flynn, a clinical psychologist who has specialised in working in neurodevelopmental and forensic services. She told us of her strong sense of professional responsibility, particularly when it comes to working with people who have been poorly served by the systems that were supposed to care for them. We talk about the need to have robust discussions about issues such as diagnosis, whilst also recognising the potential implications of such conversations. We discuss the need to ensure that we do not remove the structures which people use to get support before there are other options in place.

Alison talks to us about the history of harm from psychology towards neurodivergent people, and how this might shape the way people show up in this space. We cover many topics, including the challenges faced by people trying to navigate systems of support, the school to prison pipeline, the inherent political nature of the work that we do as clinical psychologists, and what it means to be neuroaffirmitive. Alison is a wealth of knowledge and we think you’ll agree this is a lively and interesting discussion.

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This week, we speak to Jonathan Machnee, an autistic computer engineer and independent autism researcher from Canada.

Jon got in touch after the response to our episode with Uta Frith because he is particularly interested in the online dynamics around autism and neurodiversity. Jon is the host of Christianity on The Spectrum, a long form podcast where he talks to people about the intersection of Christianity and autism, and many other things besides.

In our discussion, Jon reflects on his own relationship with autism, his experiences as part of the autistic self-advocacy community, and what he has learnt from years of ethnographic research into what autistic people say online.

Jon has a real clarity of thought and depth of experience. We cover a wide range of topics, including the double empathy problem, the heightened sense of social justice often associated with autism, masking, and the concept of the autism spectrum itself.

Do let us know what Jon’s interview brings up for you, and any reflections you would like to share with other listeners. We think this one could be a great conversation starter.

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Dan Lovesey is an autistic researcher, academic and creative who is part of the disability and inclusion team at The University of Law, UK. He has recently completed his PhD and has written a book about neurodiversity and the creative industries, Creative Minds, Divergent Paths.

Dan got in touch with us because he was concerned about the lack of balance he saw in conversations about neurodiversity. He felt that lived experience expertise was being presented in some cases as if it applied to everyone and thought that this had the potential to do harm.

In this frank conversation, Dan explained why he thinks that lived experience expertise isn’t treated in the same way as academic or clinical expertise, and how this can lead to ideas not being adequately tested or challenged.

He says there’s a difference between being an autistic expert, and an expert in autism, and that it’s crucial that we make that distinction.

Enjoy the show.

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Dr Chris Bagley is a psychologist, teacher, writer and musician with an interest in the evolution of ideas, educational transformation and systems change. He is Director of Research at social enterprise, States of Mind, Co-Director at Square Peg CIC and a Tutor at The Institute of Education, University College London.

I (Naomi) first met Chris several years ago, as we were both critiquing the education system and trying to imagine ways that education could be different. I was immediately struck by how clearly Chris sees the problems in the school system and how it (doesn’t) work for the most marginalised young people. He is always thinking about the effect of education on the children who are labelled the failures - who could also be seen as those whom school has failed.

In this in-depth and wide-ranging interview, Chris tells us about being a psychologist in the school system, and how he feels that it pathologises the young people who don’t fit its requirements. He explains how the medical model and our model of education interact to protect each other. Children’s distress about school is labelled and treated as a medical problem, meaning that we don’t ask important questions about whether our education system is really fit for purpose.

His first book, States of Mind, written with Bea Herbert, was recently published and is available from all good booksellers.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit neurosense.substack.com