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At first glance, this audiobook may seem intimidating. The Audible version is just over 23 hours long. However, the subtitle, "The story of Autism" is quite correct because this is a narrative. It is engaging and interesting and tells the history of Autism in a story format, incorporating the stories of those who were involved. The Audible chapters are generally 20-40 minutes, meaning it can be taken in neat smaller chunks. For the most part, it can be listened to around children except for the chapter on FC where graphic sexual abuse allegations are made and the occasional cuss word from quotations elsewhere. The narrator has a pleasant voice and is easy to listen to.
The book begins with Donald Triplett, the first child diagnosed with Autism. It goes back into the past, to explore historical cases of possible Autism to explore the assertion that "Autism has always existed." It looks at the rise and fall of the "refrigerator mother," the movement to stop institutionalization, and the movement to get children with Autism the option to go to schools with "normal" children. It documents the timeline of researchers looking at the symptoms, causes, prevalence and biomedical issues concerning Autism, including the war on vaccines. It looks at the organizations who stepped up to spread awareness for the condition and helped to fund the first studies about it.
When scanning the reviews after starting the book, I saw several reviewers criticize the book for being about "the parents of children with Autism" and not more about the disabled people instead. I find it hard to believe that these people read the entire book. There are many individuals with Autism who are portrayed prominently in the book. There are also a lot of parents of children with Autism who are featured, but with good reason. The first reason is that most of the "high functioning people with Autism" who would be capable of arguing about the perception of Autism would not have even been considered Autistic when the diagnosis was originally conceived. And of those who were, a great majority were locked away institutions and would not have received an education to help them be able to be leaders in the Autism community. So, yes, a lot of parents are involved in the story of Autism because they were the ones who fought for change because their children were not able to speak for themselves. Only after parents pushed for education and services and non-institutionalization and after Asperger's Syndrome was added to the mix, did we see higher functioning people with Autism leading "normal" daily lives, getting careers and starting to speak for themselves. Toward the end of the book, there is a confrontation between a mother of a child with severe Autism (who has medical issues, seizures and gastrointestinal issues related to his Autism) and an activist who has high functioning Autism. The activist says that Autism does not need a cure, while the mother asserts that this normal-looking person with Autism who can talk and drive does not necessarily speak for her son who in his sickened condition, probably does not want to exist this way.
The book resounded with me, both as a mother of two daughters with Autism and as a licensed teacher in special education. I recommend it to anyone looking to learn more about Autism and for educators as well. It has a great balance between narrative story and technical details that will appeal to the general public and higher education alike.
5 of 5 people found this review helpful
The best biographies (or histories) are those which transcend the story that is being told. One does not even have to be interested in Autism to appreciate fully what the authors have done with this book. The arc of the story is tied together by how our understanding of the nature of Autism has changed from its early days until today and how complex it is to do science right.
The authors usually tell their history by focusing on particular characters and put them into the context of the time period. The science of the times at first (psychoanlytical theories) blame the moms ('refrigerator moms") or next with the behaviorist use 'cattle prods" or slapping for dealing with the autistic children. The moms (and dads) are some of the real heroes. They realized that the status quo was not acceptable and not effective. Pre-internet days they did what they could and organized and made a difference. Sometimes, we lose sight of the fact how important individuals can be in changing the accepted scientific norms. Kindness, understanding and patience turned out to be more effective strategies.
The labels (the definitions) we give determine how we understand. The authors step the listener through many different ways we thought about Autism and by doing that the listener gets a good understanding of what Autism means. I even understand why the DSM V has dropped the Asperger category and why it's best thought of as part of the Autism Spectrum. The authors are always neutral in their reporting of the facts and let the science speak for itself. They cover in detail why vaccines do not cause Autism, why some people can reasonably think about Autism as neurdiverse (v. neurotypical), and why there is probably no epidemic in the growth of Autism, and how important it was to educate the public about the reality of Autism through all means possible.
The book gives a good perspective on how and why we think about Autism the way we do today, and how science can be fluid but seems to have a self correcting mechanism (albeit sometimes acting at a snails pace) within it, and how individuals do make a difference even when they are not part of the scientific tribe.
4 of 4 people found this review helpful