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E-book The Rise of Autism : Risk and Resistance in the Age of Diagnosis
Autism is being diagnosed more often in both children and adults. The big question iswhy?This book aims to answer that question by offering an account of the modern-day (post-1990) rise in the use of autism as a diagnosis. My research in this topic comes from my work as an epidemiologist and social scientist with a strong interest in the activist counter-narrative of neurodiversity.1 My view is partial and situated;2 my knowledge spans both the above disciplines but does neither of them justice. Therefore, I have chosen to address this question with a focus on what I do know about: my research, which has led me to reflect on how the work was carried out, who shaped it and why. The book focuses on my research in the last ten years, much of which has been carried out in collaboration with various colleagues and students; some of the empirical work reported here is new and some comes from published studies.The post-1990 period has been a time of change and, in high-income coun-tries, roughly equates to the period sociologists refer to as late modernity;3 a time in which identity politics and self-definition have intensified. This has in turn shaped medicine, particularly in the field of autism research. I hope this book will reflect this and be read not only by academics and clinicians but also by people with autism/autistic people (I will be using these two terms interchangeablyi) as well as people in autism-related jobs, educators, health professionals, students and parents of people with autism.The rise in autism diagnoses since the 1990s is a phenomenon of high-income countries, particularly those in North America and Europe. We have no reli-able data to identify trends in autism diagnosis for lower- and middle-income countries. According to our cross-sectional review of published papers in autism research in 2016,4 we found (but had no space to report) that 85% of autism research took place in North America and Europe, and 45% of European research happened in the UK (Figure I.1). Very little research (
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