Let's Talk Neurosense: the psychology of neurodiversity

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.

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Dr Danielle Drinkwater is a clinical psychologist and co-host of Let’s Talk Neurosense.

In this interview-with-the-hosts episode, Dani talks about her path into clinical psychology and why she wanted to work with children. She explains her clinical experience working as a neurodevelopmental diagnostician, and explains why she found herself increasingly uncomfortable with her part in the diagnostic process. She asked questions, but found it hard to get answers she was happy with.

This is an unusually honest insight into the mind of a diagnosing clinician. We hope that you enjoy it.

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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

We’ve released ten episodes of Let’s Talk Neurosense. We’ve interviewed ten different people, all with quite different perspectives on neurodiversity. It’s been a bit of a rollercoaster, and we’ve learnt a lot along the way.

Now we’d really like to know if you have questions you’d like us to answer - or people you’d like us to talk to in upcoming seasons. Please let us know in the comments. And please tell other people about us if you’ve enjoyed listening to season 1.

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

This week, Dani sits down with Naomi to find out about her journey into clinical psychology, her relationship to the topic of neurodiversity, her experiences of home schooling her two children, and some of the reasons she wanted to start this podcast. They reflect on some of the responses that Naomi has received since speaking out about the things that concern her online, as well as some of the ways that she tries to stay grounded and connected to what matters.

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

Children across the UK are waiting for years in order to get a diagnosis of autism or ADHD. And in the meantime, it can be impossible for their families to get the help that they need. Some of them are stuck; without a diagnosis they cannot access support, but waiting lists means that needs are going unmet.

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In Portsmouth, they decided to do something about this. Their Neurodiversity Team provides services and support for 0-19 year olds across the city, without requiring a diagnosis. In consultation with local families, they created a Neurodiversity Profiling tool which aims to identify a young person’s needs so that support can be offered quickly. The whole city was reorganised along needs-led lines - a diagnosis is not used to limit access to education or health services. This exists alongside the diagnostic pathway which some families still go down.

Claire Mason is the Neurodiversity Service Lead in Portsmouth, and in this interview she told us all about how it works. She explained how the profiling tool works, what it means in practice and the feedback they’ve had, both negative and positive. If you want to know more about the Portsmouth needs-led approach, click here.

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When we asked Fabian what his autism diagnosis meant to him, he didn’t beat around the bush. ‘I was lost and then I was found’ he said. Fabian collected several psychiatric diagnoses before he realised that he might be autistic. He worked it out for himself and then a psychiatrist confirmed it. He says that seeing himself as disabled, rather than having a psychiatric illness, changed everything.

But Fabian is sceptical about some of the ways that autism is being portrayed and discussed online. While he thinks that people should be able to self-identify, he recognises that lived experience is a complicated thing and there are multiple incentives at place. When people post reels of themselves having meltdowns on social media, for example, what is that about? Should we value lived experience over research - and what happens when they point us in different directions? This was an unusually open conversation and we hope you enjoy it.

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

Earlier this year a new book, ‘Upward Bound’, garnered a lot of attention. It’s authorship was attributed to non-speaking autistic man Woody Brown. It was covered in the Guardian, the New York Times and the Today Show. It’s part of a long tradition where non-speaking autistic people are credited with the authorship of books and articles that they spell out, letter by letter, with the support of a facilitator.

But is it too good to be true? This is a hotly debated area, with some claiming it can be abusive, while others say it’s the key to unlocking a person’s inner life.

Amy Lutz is someone for whom this has personal resonance. She has an adult son, Jonah, who she describes as profoundly autistic. Her concerns about how he and people like him are being spoken over led her to do a PhD which became her book ‘Chasing the Intact Mind- How The Severely Autistic and Intellectually Disabled Were Excluded from the Debates That Affect Them Most’.In our discussion, Amy talks about her experience as a parent, her concerns about the potential harms of facilitated communication, and the contradictions of the neurodiversity movement. She also discusses the limitations of the social model of disability when applied to those with severe cognitive disabilities.

Amy sheds light on a fascinating and highly contested area of autism from both a personal and academic perspective. This is a conversation you won’t want to miss.

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

In this episode, we talked to Jonathan Green. He’s a child psychiatrist and conducts research into children’s social development at the University of Manchester. His research centres around early intervention for autistic children - but he doesn’t work directly with the children. The intervention is with parents, to help them to understand and interact with their autistic children better. They aim to improve the social environment of the child, to better scaffold their development.

Jonathan tells us the details of how these interventions work, what their research findings are and why he is so passionate about bringing evidence-based early intervention to as many families as possible. We also discuss some of the controversies around the idea of early intervention.

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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

This week we are delighted to bring you this interview with Anna. Anna is an autistic woman diagnosed in adulthood who is passionate about raising awareness of non-stereotypical presentations of autism. She also has severe OCD and has been housebound for the last six years. She has a YouTube channel called ‘Autism’s Individual’ where she posts about autism and her life.

In this conversation with Naomi, Anna explains how she spent her childhood being described as ‘an enigma’. She tells us about her diagnosis of Asperger’s syndrome at the age of twenty-one, and what that meant to her. She also speaks about masking, the need for subgroups in the autism spectrum and why she thinks we need to keep using the word ‘disorder’.

Anna has a unique perspective on autism and a fascinating story to tell. We hope you enjoy it.

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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

Dr Helen Kirkaldie is a clinical psychologist who specialises in working with adopted children and their families. She has extensive experience in working with developmental trauma and attachment.

In this conversation, she tells us how working with children has changed over her nineteen years of clinical experience, and how, as a society, we seem to have moved towards a more diagnostic framing of children’s differences and difficulties. She talks about how the question of autism or ADHD is now frequently part of her work, when previously it would not have been. We talk about how children’s behaviour and distress can always be viewed through different lenses, depending on the perspective of the adults around them.

We discuss the way that professionals try to help, and how a diagnosis can be essential for children and families in accessing support. We talk about the many different roles that a diagnosis plays, and the dilemmas that this creates for professionals and families. This is an honest conversation about the real-life tensions of clinical practice with distressed children and their families.

We hope you enjoy it.

Thanks for listening to Let's Talk Neurosense: the Psychology of Neurodiversity. Subscribe for free to receive new episodes as they are released.

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