Let's Talk Neurosense: the psychology of neurodiversity

Are autism and ADHD overdiagnosed? Underdiagnosed? Misdiagnosed? What’s really going on?The UK government commissioned a report last year to address exactly those issues and it’s finally here. The Fonagy report was published on 9th Oct and spans over 600 pages.That’s a long document, and there have already been a lot of takes on this report. Some have said that it confirms that overdiagnosis isn’t happening and that this is welcome, while others have framed it as an attack on neurodivergent people. It suggests that we should be moving to a needs-led system, plus diagnosis. What does that really mean? We sat down with James Barnes who luckily for us has put the time into understanding this report to ask him what he thinks, and where we go from here. James wrote a thorough response to the report on his Substack The Between Us which can be read here.James’s website is here. 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 Lester Liao is a Developmental Paediatrician at the Montreal Children’s Hospital and Assistant Professor at McGill University, where he is Director of the Formation of the Professional as Healer Course and Creator and Director of the Doctor as Person Fellowship. He is an Associate Member at the Institute of Health Sciences Education.He is particularly interested in the role of philosophy and culture in shaping the practice of medicine. He has become increasingly concerned about overdiagnosis of autism, and in this interview he explains why. He tells us why he thinks so many children are being diagnosed with autism, and how a diagnosis can harm as well as help.Lester’s paper on overdiagnosis with Eric Fombonne- Liao L, & Fombonne E. (2026) Autism Overdiagnosis and Its Harmful Effects. JAMA Pediatr. 180(7):711–712. doi:10.1001/jamapediatrics.2026.0400 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

How does the meaning of words change over time - and what are the implications when those words are clinical terms? Nick Haslam is an academic psychologist, and his work has looked at the expansion of psychological terms like ‘trauma’, ‘abuse’ and ‘bullying’. He suggests that these concepts expand over time, becoming both less extreme (vertical expansion) and broader (horizontal expansion). In this interview, we talk about how that applies to neurodiversity. We discuss how formal terms like ‘ADHD’ have expanded, but also how the emergence of informal terms like neurodivergence have increased the number of people who think that perhaps their difficulties in life are due to their differently wired brains. Nick is at pain to point out noting semantic shifts like this isn’t about judgement, it’s simply an observation. How we use words changes over time - and this has implications for clinical practice.Nick is a prolific researcher and we have just selected a few, free-to-access examples of his work here. Here’s a recent paper about concept creep. Here is some of his work about the mixed blessings of biogenetic explanations. Article in The Conversation about the way that the conversation on social media has shifted over time, with autism and ADHD now dominating. Finally, the two papers by Lucy Foulkes and colleagues, mentioned by Dani and Nick, about the prevalence inflation hypothesis, and the Barry Mason paper about Safe Uncertainty. 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

Nabeelah got in touch with us because she was concerned. She has an autistic 6-year-old whose autism has been obvious since she was very young and who is minimally speaking. She felt that children like her daughter were invisible. Her family’s priorities are not represented in the conversation about neurodiversity and it’s more than that, she thinks that we are lacking the language that we need to describe important differences between autistic people. The word ‘autism’ is being used to mean too many different things. In this heart-felt episode, Nabeelah told us about the early signs of difference she saw in her daughter and how little support there is available. She looked for early intervention, only to be told by a speech and language therapist that she herself was the early intervention. She sought help in online groups, only to be told she was ableist for wanting to help her daughter stop using nappies. She told us of her daughter’s difficulties - pica, toileting, elopement - and how she doesn’t see organisations or researchers prioritising the needs of families like hers. She told us of how difficult it is even to describe her daughter’s challenges, because all of the language has been problematised. She told us of her love for her daughter and how joyful life with her could be. Nabeelah isn’t denying the reality of anyone’s struggle – but she’s saying that some people are being missed. There has been a re-centring of the autism discussion, away from the severely disabled, and yet we don’t have the words to describe the problem. This conversation is a valuable insight into the world of the families of severely autistic children, and a wake-up call for anyone who might have assumed that, at this end of the spectrum, needs are being met and families supported. Here’s a link to the study Nabeelah mentions which looked at the underrepresentation of those with intellectual disabilities in autism research.For a discussion of PACT and other similar early intervention approaches briefly touched upon in the episode, start here.For information about the Cambridge Attention, Learning and Memory centre click here.Our episode with Amy Lutz, mentioned in this interview - parent of a severely autistic adult child and disability historian.And finally, here is a link to some research on developing the consensus definition for profound autism. 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

“I would love if the phrase nature vs nurture disappeared from the planet. I think it’s really held back a lot of progress. It’s nature and nurture. If we think of science as nature and nurture we are going to make progress a lot faster than if we keep dividing it into separate things because that’s just not how the world works.” Robert WrightAre you confused by the nature vs nurture debate? Are you unsure what it really means to say that ‘autism is genetic’, and why people say that there is ‘missing heritability’ in autism? You wouldn’t be alone. The science of behavioural genetics seem to get more complicated the more closely we look. That’s why when the National Autistic Society stated that ‘autism is genetic’, we wanted to know more. It just seemed too straightforward to be true and we weren’t sure how the evidence matched up. So we were delighted when we found Bob Wright, a paediatrician whose work speaks to exactly this. Bob could not be better placed to help us to understand, drawing on his knowledge not only of paediatrics and neurodevelopment, but also of genetics and the emerging field of exposomics.In this episode, we asked Bob whether the National Autistic Society were right to make this statement, what he thinks they might be missing, and why he thinks that the question of the genetics of autism is far from resolved. He uses stories to bring these ideas to life - look out for the yellow flanked chickens! Bob described himself as an exposomic scientist. Exposomics, in contrast to (but in many way complimentary to) genomics, was first introduced by Christopher Wilde in his seminal paper in 2005. It is the science of the environmental exposures throughout a person’s lifetime and how these relate to health. For Bob, it offers a promising new area of research and knowledge development that could help us both to understand autism better but also perhaps offer hope to families of profoundly autistic children. Bob has a talent for making complex ideas digestible, using stories that really helped Naomi and I begin to get a handle on this topic. We hope that this conversation will resonate with many of you or at least will start some new conversations! Find more from Bob on his Substack page, including in The Miseducation of Autism Heritability and On the Origins of a Specious Argument about Autism Part 2: Twins, where you can find more details of the chicken story and more. 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