We’re Not Broken: Changing the Autism Conversation

Book Review by Isabella Watts

Eric Garcia, We’re Not Broken: Changing the Autism Conversation. Mariner Books, 2021. 304 pages.

The well-respected political journalist Eric Garcia has written for publications including The Washington Post, The Week, and The New Republic for many years. He is now the senior Washington Correspondent for The Independent. This is his first book, and it is a beautifully written and broad ranging description of what it is like to live with and advocate for the rights of those with autism. He challenges us to realise that ‘society should stop trying to cure autistic people and instead help them live fulfilling lives’.

The author is himself autistic and blends his own personal experiences, and those of other individuals on the autism spectrum, with carefully curated research. Garcia notes in the introduction that the writing of this book was triggered in part by a question he was asked when an interviewee turned the tables on him and asked, ‘What is it like to have autism’. Garcia muses: ‘how could [he] explain what it is like to have this massively complex condition that has only really been in the public lexicon for seventy years without getting it wrong? How could he share [his] personal experiences while also conveying that they are not indicative of the entire autism spectrum?’. What results is a beautifully researched and written book that makes you stop and think about the cultural perceptions of autism and how some aspects of day-to-day life many of us take for granted can exclude neurodiverse people.

Each chapter of the book discusses different issues facing individuals on the autism spectrum. Chapter topics include policy, education, work, housing, healthcare, relationships, gender, and race. Garcia sympathetically shares how difficult navigating the subject of autism can be and highlights that different advocacy groups working within the field sometimes have opposing opinions, to the detriment of those that they are trying to help. He also discusses some of the terminology that he uses such as autism spectrum disorders rather than Asperger’s (an older term named after the early 20th century Austrian paediatrician Hans Asperger). He also explains that he will use the terms ‘high-functioning’ and ‘low-functioning’ as they are often used by society more broadly, but that many autistic people do not like these labels. Whilst I loved and learnt a huge amount from each chapter, I will discuss a few areas of the book that I found particularly poignant or informative.

In the first chapter of the book where we learn about politics and the history of autism, it was interesting to learn how the early work around autism has shaped certain societal stigmas. I was astounded to realise that autism only became a separate diagnosis from schizophrenia in 1980. Equally upsetting to discover was how some of the historical work on autism has had ongoing damaging repercussions–for example, the early opinion by medical professionals that autism was caused by parents not wanting their children. More recently the (now discredited) work by Andrew Wakefield, linked autism to the MMR vaccine. This misinformation had and has the potential to be incredibly damaging to both autistic children and their parents. The searches for these autism ‘cures’ can lead to children being injected with dangerous chemicals or having important nutrients cut out of their diets. More insidiously, this concept of finding a ‘cure’ means that society focuses on prevention rather than seeing and celebrating autism as part of diversity within the human population.

In his chapters on education and work Garcia explores new educational structures that have been set up for autistic individuals and how they help these individuals to thrive. He challenges the common view that if a person with a disability succeeds, then their disability is not ‘real’, leading some to challenge whether autistic persons needed the educational accommodations they were given. He then explores his own self-stigma around asking for accommodation at university and the fears he had of being judged by his professors – before then highlighting how crucial they were in helping him to get to where he is today.

In another chapter Garcia explores the lives of those with autism in the workplace, interviewing autistic individuals in a wide range of jobs and those who work with advocacy groups. It is increasingly recognised that diversifying the workplace will benefit companies as a whole – but there are still a worrying number of hurdles for neurodivergent people. As a neurotypical person he discusses issues that had never crossed my mind – such as the ‘cues’ and ‘unspoken rules’ that neurotypical people will respond to. He also explores our ‘savant’ perception of autism, which deems ‘high-functioning’ autistic individuals as mathematical gurus who take the tech world by storm and run Silicon Valley companies. This can exclude those who do not work in STEM jobs or put undue pressure on individuals to perform above and beyond expectations.

As a doctor I also found Garcia’s discussions about autism and healthcare fascinating. It has really changed the way in which I respond to autistic individuals and recently on seeing a young man with autism in the emergency department I was able to implement some lessons from the book such as turning down the lights, reducing the number of people in the room and switching to a communication style that suited that individual (a pen and paper). We are taught so little in medical school on how to interact with neurodiverse people – which is shocking when you realise that they form a significant proportion of our society.

There is so much more I could write about this book: from the difficulties that women with autism can face, to the media portrayals of those with autism and the racial stigma involved in autism diagnosis. This book has really changed my perception of living with autism and made me realise the importance of educating doctors as well as members of the public about neurodivergence. To encapsulate this book I would echo Garcia’s own words, describing his book as a love letter to autistic people who have been ‘forced to navigate a world where all the road signs are written in another language’. This metaphor framed my whole experience of reading, and has made me realise that there are other languages in society that we all need to learn.

 

Isabella Watts is an academic Foundation programme doctor at St George’s University Hospital.

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