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The Autism Curve

DormouseAtRest_25

https://www.bbc.co.uk/programmes/m002bszl

13:45 to 14:00,

Monday 05 May to Friday 09 May,

BBC Radio 4.

1. The Data.

What do the data showing a steep rise in autism diagnoses reveal - and hide?

A 20-year study in the UK showed an astonishing eightfold rise in new autism diagnoses on an exponential curve. We hear from the study’s author Ginny Russell and ask how the numbers compare in other parts of the world. And Professor Joshua Stott explains how a surprising discovery at a dementia clinic led him to calculate that that enormous rise in diagnoses may still undercount the country’s autistic population by as much as 1.2 million.

2. The Past.

How has autism changed to include those - like women - who were previously missed?

To make sense of the steep upwards curve in autism diagnoses, we go back to the start, to understand who we counted then compared with now. Professor Francesca Happé describes the evolution and expansion of the definition of autism, including the role played by Hans Asperger and controversy around his alleged Nazi sympathies. And we hear from Sarah Henrdrickx, author of Women and Girls on the Autism Spectrum, about how women have been misdiagnosed with mental health conditions rather than autism; and from education consultant Frances Akinde about the experience of autistic people in ethnic minority groups.

3. The Science.

What’s the evidence that there’s been a rise not just in diagnosis, but in autism itself?

We’ve heard that the exponential trend in autism diagnosis can be explained in large part, at least, by a widening definition and the diagnosis of groups - like women - who were previously missed. But could the amount of underlying autism also be rising? And if so, why? Professor Francesca Happé explains the role of genetics, environmental factors, and vaccine scares. And Ginny Russell, author of The Rise of Autism, talks through her research into the plausibility of various causes that people claim are behind a real rise in autism.

4. The Identity.

Autism today is not just medical but political. So who gets to decide who‘s autistic?

The neurodiversity movement has given autistic people a voice in discussions about autism and its growing diagnosis for the first time. Ari Ne’eman, who co-founded the Autistic Self Advocacy Network, describes how he wanted to push back against groups run by the parents of autistic children, which advocated “pseudoscientific treatments and cures”. Today, people like Ellie Middleton, an autistic and ADHD content creator, celebrate their autistic identity online, inspiring others to self-diagnose. Are sceptics right to suspect a social media fad?

5. The Spectrum.

Has the idea of autism expanded so far that it’s breaking?

The rapid upwards curve in autism diagnoses and a social media-fuelled trend for self-diagnosis have led to tension. Autism’s centre of gravity has shifted: now those without an intellectual disability are most visible. But where does that leave autistic people who do have an intellectual disability and who could also be non-speaking? Who speaks for them? And what is diagnosis for anyway?

Parents

  • 3. The Science:

    "The Rise of Autism: Risk and Resistance in the Age of Diagnosis"

    By Ginny Russell, Routledge, 15 Dec 2020 - 202 pages.


    The Open Access version of this book, available at

    http://www.taylorfrancis.com/books/e/9780429285912

    has been made available under a Creative Commons Attribution-Non Commercial-No Derivatives 4.0 license.

    "This innovative book addresses the question of why increasing numbers of people are being diagnosed with autism since the 1990s. Providing an engaging account of competing and widely debated explanations, it investigates how these have led to differing interpretations of the same data. Crucially, the author argues that the increased use of autism diagnosis is due to medicalisation across the life course, whilst holding open the possibility that the rise may also be partly accounted for by modern-day environmental exposures, again, across the life course.

    A further focus of the book is not on whether autism itself is valid as a diagnostic category, but whether and how it is useful as a diagnostic category, and how the utility of the diagnosis has contributed to the rise. This serves to move beyond the question of whether diagnoses are 'real' or social constructions, and instead asks: who do diagnoses serve to benefit, and at what cost do they come?

    The book will appeal to clinicians and health professionals, as well as medical researchers, who are interested in a review of the data which demonstrates the rising use of autism as a diagnosis, and an analysis of the reasons why this has occurred. Providing theory through which to interpret the expanding application of the diagnosis and the broadening of autism as a concept, it will also be of interest to scholars and students of sociology, philosophy, psychiatry, psychology, social work, disability studies and childhood studies."

Reply

  • 3. The Science:

    "The Rise of Autism: Risk and Resistance in the Age of Diagnosis"

    By Ginny Russell, Routledge, 15 Dec 2020 - 202 pages.


    The Open Access version of this book, available at

    http://www.taylorfrancis.com/books/e/9780429285912

    has been made available under a Creative Commons Attribution-Non Commercial-No Derivatives 4.0 license.

    "This innovative book addresses the question of why increasing numbers of people are being diagnosed with autism since the 1990s. Providing an engaging account of competing and widely debated explanations, it investigates how these have led to differing interpretations of the same data. Crucially, the author argues that the increased use of autism diagnosis is due to medicalisation across the life course, whilst holding open the possibility that the rise may also be partly accounted for by modern-day environmental exposures, again, across the life course.

    A further focus of the book is not on whether autism itself is valid as a diagnostic category, but whether and how it is useful as a diagnostic category, and how the utility of the diagnosis has contributed to the rise. This serves to move beyond the question of whether diagnoses are 'real' or social constructions, and instead asks: who do diagnoses serve to benefit, and at what cost do they come?

    The book will appeal to clinicians and health professionals, as well as medical researchers, who are interested in a review of the data which demonstrates the rising use of autism as a diagnosis, and an analysis of the reasons why this has occurred. Providing theory through which to interpret the expanding application of the diagnosis and the broadening of autism as a concept, it will also be of interest to scholars and students of sociology, philosophy, psychiatry, psychology, social work, disability studies and childhood studies."

Children
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