The Rise of Autism

by Ginny Russell

The Open Access version of this book, available at 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 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.

Genres: Nonfiction, Health, Autistic Spectrum Disorder, Psychology

202 pages, Paperback

Published August 1, 2022

Reviews

[Nicola]

I read most of this book in an afternoon. It is so humane, so nicely written and so engaging that I've neglected the O'Sullivan diagnosis book I should have been reading. Russell addresses some really controversial topics, focusing on what might explain the rise in diagnoses, alongside the changing diagnostic descriptions. I found the text particularly clear on the statistics about rises and on medical, social and neurological stances. Because she examines diagnosis through a sociological lens, this maintains some distance. Despite this being such a contentious area, I would hope no-one would be offended by this text: I certainly wasn't, and it addressed really well some of the uncertainties I have about autism diagnosis. As she notes, we have turned a continuum into a category. The borders of that category, e.g. by measuring neural processes, are arbitrary. I was interested to learn that in a study cited, 30% of children with a diagnosis at 2 no longer have that by age 4. The rise in diagnosis has been four times as high at the 'higher functioning" end, and Russell's own research shows only 2% of participants in previous published studies are nonspeaking. These factors in themselves reshape how we define autism. Russell also explains the 'loop' effects that increase diagnosis rates, such as higher awareness, reduction of stigma, differing representation of subgroups in research and changing boundaries over time. What is the nature of autism: is it "real", who decides who is autistic, where are the autistic kids with learning disabilities in the narrative of neurodiversity and what is autism in women? The section on masking, which I've always found a difficult concept, shows the inclarities and shifts in the narratives about it. The potential conflict between different epistemic authorities (e.g. science, lived experience) is well explained. I took the point about a diagnosis meaning all of someone's behaviour is interpreted through an autistic lens, whether appropriate or not. For me a really striking point, which Russell ends on, is that the growing expanse of what is autistic might narrow the scope of what is normal, particularly for women. It feels quite sinister that efforts to create diagnostic scales for women see "non-feminine" behaviour as a sign of autism. Of course this also feeds into the sometimes dangerous debate on autism and transgender identities (see Hannah Barnes's book). I've had the same question asked of me as Russell has, as an autism researcher, hints that maybe I should be diagnosed myself. Indeed, the short online scales you can do sometimes could be used to make that claim. Russell's way of asking what functions diagnosis provide to people helps make sense of a confusing landscape. It's great that this has been made an open source text, and should be widely read.

[Aly Bernatovich · Rating 4 out of 5]

An attempt to explain the rise... I thought there were too many variables to actually explain that there is a rise