Unstrange Minds: Remapping the World of Autism

by Roy Richard Grinker

Unstrange Minds documents Grinker's quest to find out why autism is so much more common today, and to uncover the implications of the increase. His search took him to Africa, India, and East Asia, to the National Institutes of Mental Health, and to the mountains of Appalachia. What he discovered is both surprising and controversial: There is no true increase in autism. Grinker shows that the identification and treatment of autism depends on culture just as much as on science. As more and more cases of autism are documented, doctors are describing the disorder better, school systems are coding it better--and children are benefiting. Filled with moving stories and informed by the latest science, Unstrange Minds is unlike any other book on autism. It is a powerful testament to a father's quest for the truth, and is urgently relevant to anyone whose life is touched by one of history's most puzzling disorders.

Genres: Autistic Spectrum Disorder, Nonfiction, Psychology, Science, Disability, Anthropology, Health

340 pages, Hardcover

First published January 1, 2007

About the author

B. 1961

Professor of Anthropology, International Affairs, and Human Sciences at The George Washington University.

Grinker is an authority on North and South Korean relations. As part of his PhD research, he spent two years living with the Lese farmers and the Efé pygmies in the northeastern Democratic Republic of the Congo as a Fulbright scholar. He has also conducted epidemiological research on autism in Korea.

Reviews

[Lars Guthrie · Rating 4 out of 5]

A subtitle on the cover of Richard Grinker’s ‘Unstrange Minds,’ ‘A Father, a Daughter, and a Search for New Answers’ might give you the idea that his book is a memoir. And in part, it is. The struggles and rewards Grinker and his family go through as they raise, and grow with, their autistic member, the unforgettable Isabel, are touchingly told.

‘Unstrange Minds’ is much more than that, though. Grinker is an anthropologist, and he knowledgeably writes about how the definition and treatment of autism differs in relation to culture. He recounts his journeys to South Korea, South Africa and India, where he interviews the parents and educators of autistic children. He investigates the way different societies and governments deal with developmental and mental disorders.

It was interesting to learn that people with such disorders are more likely to be become participating members of their community in rural areas than they are in cities. It was also encouraging to find out that even though we still stigmatize and have a long way to go, America is probably one of the better places to be if you are autistic.

The first half of ‘Unstrange Minds,’ however, is neither memoir nor anthropological treatise. It is an excellent, and invaluable, primer on the history of the diagnosis of autism, the study of its causes, and the treatment of its symptoms. Looking at that history, Grinker questions whether the increasing recognition of autism is the sign of an epidemic, or the result of more sophisticated diagnostic tools. He comes down on the side of the latter.

The history of autism as a diagnosis is quite a recent one, starting with the work of Leo Kanner and Hans Aspberger in the 1940s, and moving into the infamous work of Bruno Bettelheim in the 50s and 60s. Bettelheim, who was neither an MD or a psychiatrist, whose clinical studies were without scientific merit, was a superb self-promoter. On the basis of a popular book, ‘The Empty Fortress,’ he became an ‘expert’ pursued by media—an expert who blamed autism on bad mothers.

Diagnosing diseases of the mind through subjectivity and moral judgment is, of course, nothing new. Grinker points out that the DSM (the Diagnostic and Statistical Manual of Mental Disorders)—what people in psychiatry, psychology, medicine and health insurance use for diagnoses—didn’t exist until the 1950s, when it included homosexuality as a mental disorder. Autism and ADHD—not even mentioned.

Homosexuality was not downgraded to normal human behavior by the psychiatric establishment until the 70s. It took until the 1980s and 1990s for autism and ADHD diagnostic criteria to be listed. These changes are the reason you see DSM-II, DSM-III and DSM-IV, and taking it further, editions with an R added, for further revision. DSM-V is on the way, with more, and major, changes.

Clinicians who make use of these diagnostic criteria have a lot of latitude in their interpretation. It's never going to be completely objective because evaluating behavior like ‘lack of social or emotional reciprocity’ is by nature subjective, and because clinicians often diagnose to the category that gets resources from insurance companies, school districts, etc., etc. The DSM hedges its bets even further with the ‘NOS’ qualifier, as in PDD-NOS (pervasive developmental disorder, not otherwise specified), used for diagnoses close to autism that don't present the complete range of symptoms.

All of this, Grinker points out, is heavily influenced by changing social views toward mental and learning disorders. An obvious example is our attitude toward the word ‘retarded.’

The benefit in realizing the labeling is confused at best is that it means doctors and clinicians are working toward more objective analysis and categorization. That’s progress. Grinker is hopeful because the medical establishment is paying more and more attention to an identifiable set of symptoms, rather than beginning with causes. How can we know what causes something until we really know what it is? More importantly, how can we treat it?

The problem with the confusion for American parents with autistic kids, and for that matter any kids with learning differences, is the great difficulty they face in having our society and its educational system recognize, and do something about, the differences. All children should have the opportunity to measure up to their potential.

The Individuals with Disabilities Education Act (IDEA), Grinker notes, ‘wasn’t set up with the expectation that parents would be involved in extensive litigation, or that pit-bull attorneys would try to reduce witnesses to tears over the correct placement of a child with special needs.’ It often seems we are spending more to keep kids from moving forward than we are on helping them to do so.

Grinker takes the reader through his own frustrating trials to give Isabel the best possible chance of success, and the disillusionment it causes him. In the end, he still believes that ‘things have improved since autism became a more popular diagnosis.’

And he finds solace in looking for light instead of darkness in the love he has for his wonderful daughter. Isabel has helped Grinker realize ‘there is no pure, natural, or singularly correct way of seeing, and ‘to think more creatively about the kinds of meaningful relationships that are possible, and beneficial.’ Besides that, she is a pretty good cellist (with perfect pitch!) and an accomplished amateur zoologist.

Grinker has combined the personal and the professional parts of his life to produce an extremely well-written introduction to autism.

[Erin · Rating 5 out of 5]

Being a Special Education teacher, I read a lot of books about disability and particularly about autism. This is probably the best book about autism that I have read to date.

Roy Richard Grinker's book looks at autism from a variety of angles: historical, international, and personal. This is probably the only book on autism I have read so far that truly discusses how our culture came to know autism as it is today. A truly fascinating read that look at the past, present, and future of autism in our society and around the world.

Even if you've never read another book about autism, even if you know absolutely nothing about autism, I cannot recommend this book highly enough. And if you are lucky enough to have been touched by a person living with autism -- well, all the more reason to read.

[Mark · Rating 5 out of 5]

This review is going to be a little different from my regular review. Normally, the books I review are all fiction. I should also explain that I have a personal bias towards the subject of autism as my own son has been diagnosed with autism spectrum disorder. (There is a spectrum of autism. On the lower end, you have people who sit in the corner, rocking back and forth, with a vacant stare...never talking, never looking you in the eye. On the higher end, you have relatively normal people who just can't take the hint that you don't care about their World of Warcraft character and that you want them to step away from your desk and go back to managing the company website).

The danger for me in my personal bias is that I'm constantly teetering on the edge of lapsing into a heartfelt blog-style post about my own personal struggles with having a child with autism and calling for increased funding for autism treatments and for group homes and research into autism. Any parent with autism will tell you that their number one concern with their children with autism is: "What's going to happen to my child when I am gone?" I am no exception.

If you're not a parent of a child with autism, or even a parent at all, it may seem that there's not much motivation for you to pick up and read this book. Personally, I think everyone should read it because, chances are, you know someone or are related to someone who is affected on a daily basis by autism. This book will help you understand a little better what's going on with them. What works in this book's favor as far as reeling in potential readers is the author Roy Grinker's economy with words: the book comes in at right around 300 pages (not including references) and that's a relatively quick read for such an important subject.

The book itself is very well written and captured my attention. It is far from a dry treatise on autism and instead puts a human face to this disease. The most interesting aspect of the book is that it analyzes how autism was diagnosed in the past as well as how it is currently being diagnosed around the world.

Grinker first got pulled into the world of autism by having his daughter diagnosed with the condition. He decided to use his profession and personal training, as that of being a Harvard-educated sociologist, to investigate autism.

What he came up with is fascinating to me. The fact that it seems like we have an epidemic of autism all of a sudden here in the United States has a simple explanation: we only recently have achieved an "official" diagnosis for autism with reliable criteria in the scientific/medical community. Autisim used to be diagnosed a myriad of different ways...ranging from mild schizophrenia to "PDD-NOS (Prevasive Developmental Disorder - Not Otherwise Specified)" which sounds like a fancy doctor way of saying "we don't know what the heck is going on with this kid".

Also, you have to count the fact that, until recently (like within the last 10 years), certain parts of the world have been reluctant to "come out of the closet" with their children who have autism and have heretofore been hidden away, because having a kid with any kind of noticeable defect is considered shameful and even contagious in certain parts of the world. And I'm not talking about deepest darkest Africa...I'm talking about highly modern urbanized "First World" areas.

Governments are also slow in acknowledging the existence of autism, preferring to classify these kids as something more manageable. I mean, it's easier to just put the kid in an institution, make sure he doesn't die of starvation or thirst, and just forget about him, right? It's easier to do that than actually try to formulate and perform any kind of therapy to make them self sufficient.

Well...maybe it would be if autism wasn't as prevalent as it actually is. Epidemiology seems to suggest anywhere from 6 in 1000 to 1 in 100 kids are born with some kind of autism. Therefore, it becomes in our best interest to help as many of these people become self sufficient as possible.

Grinker starts off the book by telling the reader about his own introduction to autism with the diagnosis of his daughter. He then gives a pretty well written overview of the history of the autism diagnosis and the prevalence and known causes of autism. He does address the vaccination and diet issues but doesn't give them much creedence, saying that the reason there's more diagnoses of autism in kids is because we've only just come up with an official diagnosis for autism as well as accompanying criteria for the diagnosis.

One of the more interesting things I learned from the book is that ultra-low doses of anti-depressants have been effective in treating some of the more disruptive and counter-productive behaviors characterized by autism. I had no idea this was going on, but now that I do, I'll certainly investigate it as a treatment option with my pediatrician when the time comes, but only if there seems to be a need for it.

The subsequent chapters of the book consist of Grinker going around the world and revealing to the reader what autism is like in other cultures and governments. This is where the book really gets personal, with case studies and personal anecdotes of parents of children with autism all over the world. Interspersed in these case studies are episodes with his own child and her autism.

One of the more personally affecting stories to me is the one he told about the South Korean lady with a child with autism. She kept her child hidden away until, finally out of desperation, she began going to the local Methodist church. These Methodist Christians, in stark contrast to the prevailing attitudes, accepted the mother and her child with open arms and without judgement. They even took care of the child with autism, playing with him and working with him while the mother was able to have a much needed break from the public and private pressures of a South Korean woman with a child who has autism. It warmed my heart and brought tears to my eyes to realize that there exists at least one church in this world that gets it. There is a church in this world that lives out what they preach and exercises in practical living what they purport to believe. The woman in question still identifies herself as non-religious and it's a probable certainty that her lack of religion, coupled with the financial pressures of having a child with autism and just life in the big city in general, that she's probably not giving money to this church. However, there they are, doing what Christ would do without any expectation of reward (at least from the mother and her child).

The book ultimately ends with a message of relative hope. There's never been a better time in history to be diagnosed with autism than right now. There's never been a better place to be diagnosed with autism than the USA. If autism is indeed as prevalent as 1 in 100, then it follows that, in a representative government consisting of hundreds of people in power, most of them are (or at least know someone) personally affected by autism on a daily basis. This daily struggle will hopefully translate to more funding for the prevention and treatment of autism, and, God willing, a cure someday. Until then, I and thousands (if not millions) of other families in the world will struggle on out of love and duty to our kids to help them become self sufficient...because what happens to my son after I am gone? I wish that question had a definite and positive answer.

[Lindsay · Rating 5 out of 5]

This book has something for almost everyone interested in some aspect of autism: there's a history of the discovery and evolving definition of autism, there's a description of how autism is understood, and what it's like to have a child with autism (i.e., what kind of services are there, is there much social or cultural support for parents, is there much of a stigma, do autistic children have much of a chance at integrating into the larger community as they grow up, etc.), in South Korea, India and South Africa, there are vignettes describing the author's daughter, Isabel, and her development, and her influence on her younger, non-autistic sister, there's a description of the author's battles to get Isabel into the special-education programs he thought were right for her, and there's a discussion of the epidemiology of autism: how we count how many people are autistic, and how those methods have changed over the years to yield different estimates of how common autism is. It's an engaging mix of the technical and the personal, with not only the author's stories of his own life with his daughter but also the stories of mothers and children in each of the countries he visits.

The one thing I found kind of lacking in it was any treatment of "autism from the inside" --- any perspectives from the autistic people themselves. I thought he described his daughter with great insight and empathy, and occasionally he lets her speak for herself, but mostly the personal parts of this book are about caring for an autistic child, not being one.

I thought the discussion of other cultures was absolutely riveting, though. He tells you all sorts of things you would never have guessed would be true, like that Bruno Bettelheim's outdated, mother-blaming psychoanalytic theory of autism is enjoying a second life overseas after a generation of being repudiated here; or that, in some places (South Korea is where he found this to be true), autistic children in the poorest, smallest, most isolated rural villages do better than their counterparts in even the biggest, richest, most cosmopolitan cities.

There are also a ton of fun and interesting tidbits about the history of psychiatry, which Roy Richard Grinker is particularly well-situated to describe, being the scion of three generations of psychiatrists and psychoanalysts.

[Readyourselfhealthy · Rating 2 out of 5]

This again is a book that I really wanted to like--it won awards and notice from the academic community and thought to look at autism from an anthropological point of view. The book spends a lot of time initially trying to explain why autism really isn't increasing. And though it does have some valid points, such as the fact that many older people are being diagnosed (having been misdiagnosed with other disorders in the past), there is really no believable way to explain away the fact that autism diagnoses has gone from 1 in 10,000 fifty years ago to 1 in 100. It's ridiculous to even contemplate that this explained away. The author also attempts to look at autism from a historical and anthropological standpoint, but most of the points he raises where first brought up in work by Uta Frith and brings nothing new to the debate. The rest of the book deals with the author's own experiences with an autistic daughter, especially her experiences in the public school system. This part is interesting as it shows the many things that could be encountered in the school setting and offers ideas about how to be well prepared to meet some of these challenges. His daughter was, I believe, able to have some good educational experiences because of her parent's preparation. Ultimately, however, the book is a disappointment. To not acknowledge the fact that we are in a midst of a crisis at this stage in the game is both unhelpful and unrealistic. We need to move forward by not only acknowledging the crisis, but to offer solutions. No longer can we let anyone bury their head in the sand, which is what this author would have us do.

[Tobinsfavorite · Rating 5 out of 5]

I heard the author of this book on the radio shortly after I had given up "autism books" as horrifyingly depressing, and I decided I would read it. I'm very glad I did. It is divided into two sections, one by Grinker the Anthropologist, and one by Grinker the Parent. Both were informative, entertaining, and enlightening. I learned a lot of details about the history of autism diagnosis around the world, a little bit about different cultural views of the same, and a few new ways of thinking. Some of Grinker's experiences with his daughter are similar to mine with my son, and his happiness and contentment with his family situation was uplifting. With a knowledge that his child's differences may limit her interactions with others, he doesn't see her as limited and knows she can achieve a fulfilling life within and without her family structure. (Can any of us really ask for more?)
I appreciated the descriptions of educational and psychiatric practices in other countries and the wandering history of diagnosis through Freud and beyond. I really appreciated all the anedoctes from different families.
Oh, and the writing was pretty good, too.

[nic Ϟ(๑⚈ ․̫ ⚈๑)⋆ · Rating 2 out of 5]

oof. I was expecting more out of this one and was excited to read an anthropologist’s perspective (especially one who has a child with autism) but I was really disappointed. I found it quite repetitive, especially with the false notion that autism is a horrible disease that needs to be cured - he talked about his daughter as if she needed fixing and as if her value was dependent on how much of her autism she could overcome (which is already a horrid idea but especially coming from your own father). There were some aspects that I found interesting (parts of the history and cross cultural experiences with autism) but I would never recommend this to anyone.

[Nancy · Rating 3 out of 5]

An interesting book on autism that has three threads:

1)A discussion of the changes in definition and regulations surrounding access to treatment that are fueling much of the increase in children diagnosed with autism

2)Travels around the world to see how autistic children are viewed and treated in other countries

3)A sort of memoir chronicling getting treatment and education for Grinker's autistic daughter and the life long challenges of getting the best life for an autistic child

I dithered between 3 and 4 stars, settling on 3 because of the blurring of anecdote and science.

[Sim · Rating 1 out of 5]

The worst book on autism I have ever read. Biased, unproven "research", propoganda, and all the way through a sense of deep invalidation of those of us whose children have severe, disabling autism.. autism isn't a tragedy for HIM- HIS child is bilingual, winning awards. How can he possibly represent those of us with profoundly disabled children? How can he be arrogant enough to assume that he possibly could?

[Kaj Peters · Rating 2 out of 5]

Autisme vooral voor de Amerikaanse wereld

Interessant hoe het de totstandkoming van westerse diagnostische terminologie gebruikt om het idee te verdedigen dat autisme niet vaker voorkomt dan vroeger. Voornamelijk relevant in relatie tot invloedrijke Amerikaanse anti-vaccinatie bewegingen, die op onwetenschappelijke gronden pleiten dat autismespectrumstoornissen beïnvloed kunnen worden door medische ingrepen. Gringer neemt een persoonlijke link met het onderwerp - zijn dochtertje Isabel heeft de diagnose - om een historisch overzicht te geven van hoe de diagnose is ontstaan en hoe er in verschillende culturen omgegaan wordt met kinderen aan de extremere kanten van het spectrum. Zijn conclusie: er zijn niet meer autisten als gevolg van randfactoren als medisch ingrijpen, veranderde tijdsgeest of de zware eisen van een jachtig, modern bestaan; maar het kennisniveau is dermate gegroeid dat er een scherper onderscheid tussen neurotypische en niet-neurotypische breinen gemaakt kan worden.

De antropologische insteek levert verreweg de interessantste passages op over hoe autismespectrumstoornissen leiden tot stigmatisering, inclusie en exclusie. Andere gezinsstructuren kunnen best voordelen hebben boven uit huis plaatsen of andere vormen van institutionalisering. Ook komt Gringer met 'grappige' weetjes over gebieden waar je zou verwachten dat ze op één lijn staan met de rest van de westerse wereld. Zo schijnt bijvoorbeeld de jeugdpsychiatrie in Frankrijk ten tijde van schrijven (2007) nog altijd beïnvloed te zijn door de achterhaalde theorie van de koelkastmoeders: het idee dat moeders van directe invloed zijn op de autistische kenmerken van hun kinderen. Of, wat te denken, van dat men in het westen discussies heeft over mogelijk autisme van bekende filmsterren, rijke zakenlui, invloedrijke politici of iconische historische figuren, terwijl men in India geneigd is om parallellen te trekken met Hindoeïstische goden. Vooral de passages rond het prestatiegerichte, collectieve denken in Zuid-Korea leveren schrijnende verhalen op over autisten die bijvoorbeeld opgesloten worden van de buitenwereld ter bescherming van de baankansen of huwelijksmogelijkheden van broertjes/zusjes.

Knap hoe Gringer met respect weet te reflecteren op valkuilen, cultuur-afhankelijke mogelijkheden, schrijnende situaties van omgaan met kwetsbare groepen mensen in regio's waar weinig tot geen begeleiding is. Daarmee heeft Gringer oog voor de specifieke moeilijkheden/mogelijkheden van het begeleiden van niet-neurotypische breinen in niet-westerse culturele contexten. Zonder daarbij spastisch politiek correct te doen over de meerwaarde die academische kennis uit de westerse landen biedt voor individuele gevallen in andere regio's. Uiteindelijk onttrekt begeleiding met oog voor de specifieke zorgvraag zich aan benauwende culturele opvattingen.

Jammer alleen dat 'Autisme in de wereld', zoals de titel in het Nederlands vertaald is, toch vooral bedoeld lijkt om politieke, maatschappelijke opvattingen te behandelen over de specifieke situatie in de Verenigde Staten. Verder niet zoveel mis mee, maar het maakt het vanuit een Nederlandse context ietwat slepend om hoofdstukken lang oninteressante opsommingen en statistieken te lezen over bijvoorbeeld het Amerikaanse schoolsysteem en diens miskenning van leerlingen met hoogfunctionerend autisme. Voor mij had de basis bij de antropologische insteek mogen blijven, zonder gejeremieer over individuele ontplooiing van Amerikaanse autistische kinderen; zonder de focus op eigen hindernissen die Gringer en zijn vrouw op hun pad zagen voor hun eigen dochtertje.

[Andrea · Rating 1 out of 5]

I don't know if I can finish this. It's so bad, but I just stuck to it, hoping to read a bit about the actual premise of the book (autism throughout the world), but the way this is written just makes me angry.

I was able to glide over all the nonsense about autism being an incurable, terrible disease (it's neither a disease, nor terrible, and it should not be "cured") and the big mess in the first part regarding epidemiology and diagnoses and all, so I made it half-way through.

But now he's talking about how his own kid was clearly traumatized (all those red flags!) and all he cared about was fixing her and making her do things against her will. He clearly didn't give a rat's ass about his kid, or else he wouldn't keep talking about her as if she were a toy that needed fixing. He even mentioned at a point that he prefers her while she's sleeping!!! If that isn't a wrong parent-child relationship, I don't know what is.

Please don't read this piece of crap. Please don't even talk about it. It doesn't even deserve the light of day. I don't know how it got published, it's so full of inconsistencies and assumptions and just bad writing, that it's not even worth the 1 star that I'm able to give here.

I repeat, this is a mess and a step back for autism advocacy!

[Janet Leszl · Rating 4 out of 5]

The perfect counterpoint to the emotional hysteria propagated by conspiracy theorists that are panicking parents into fear of vaccines inducing autism.

The author is an anthropologist and father of a daughter with autism. At times it is clear he is a professor; particularly in part one. Rational explanations of how individuals in the past would either have no diagnosis or improper ones are presented through his detailed history of the progression of the field of psychiatry. The information is both fascinating and eye opening.

Part two is even more eye opening as he reveals how cultural biases affect diagnosis (or lack thereof) and the quality of life for individuals on the autism spectrum and their families around the globe.

[Ross · Rating 4 out of 5]

I had to read this for class. I found it to be a great guide through the history of autism and provides a good explanation for the present state of diagnosis as well as discussing the effects an autism diagnosis has on the family. It is an excellent read for any parent or family member who may have a child recently diagnosed with autism.

[Kelley · Rating 5 out of 5]

Written from an anthropological viewpoint. While most books on Autism fall into either the dry textbook category of autism or the weepy emo category, this one strikes a nice balance. By far the best on the subject I've read to date (and I've read a few)

[Ariane Zurcher · Rating 4 out of 5]

Loved this book, an honest look at autism from an anthropological and tempered view, away from the hysteria.

[Rue Setara]

Unstrange Minds: Remapping the World of Autism by Roy Richard Grinker is an exceptional book that explores the history, culture, and science of autism. This book offers a comprehensive view of autism, including its definition, understanding, impact on families, and treatment options.

One of the unique features of this book is the author's personal account of his daughter, Isabel, who has autism. The author offers a candid and empathetic perspective on Isabel's life, including her development and struggles with the educational system. The personal stories are interwoven with the technical information, providing an engaging mix of the scientific and the personal.

Grinker also offers a fascinating account of the history of autism, tracing the evolution of the condition from its earliest descriptions to its current definition. He provides a detailed analysis of the social and cultural factors that have influenced our understanding of autism, including the impact of media and popular culture. Additionally, the author provides a global perspective on autism, highlighting cultural differences and the challenges faced by families around the world.

The book also discusses the latest research in the field of autism, including the potential genetic and environmental causes of the condition. The author explores the current treatment options and provides a critical analysis of the effectiveness of different approaches.

Overall, Unstrange Minds: Remapping the World of Autism is a must-read for anyone interested in autism. It offers a comprehensive and nuanced view of the condition, providing insight and empathy for individuals with autism and their families. Grinker's personal account, combined with his extensive research and analysis, makes this book an exceptional contribution to the field of autism studies.

[Ambia · Rating 4 out of 5]

I read this book for research purposes as an anthrpopology student and also as the sister of an autistic younger brother who I cherish dearly.

As an anthropology student, the book had something to offer in its different cultural examples in part 2 and its discussions on the limitations of labeling. But there wasn't much ethnographic work to digest and I felt the lack of autistic voices was limiting how useful the book was to me. I understand that this book was an interesting delve into adult's perspectives on their life with autistic children and the limitation of the institutions around them, which is why...

...As a sister, I found this book kind of heartbreaking and heartwarming at the same time. To hear the struggles the parents went through with the failing school systems and government funding and the pressures they felt from their family or society really made me think about my parent's (more my mother's) experince. At certain points, the tales of the parents were very bleak and blunt. I was surprised by how honest they were about their own thoughts and feelings. It was also warming to hear about how many of them actively worked to fight the failiures of their context to ensure their children had the best chances. I hope this book has changef perspectives on autism and shown people that a life with autism is a life very much worth living.

[Mary Turner · Rating 3 out of 5]

There was a lot about this book that rubbed me the wrong way. However, I'm trying to be understanding because it is written by a non-autistic man from an older generation. I also thought it was strange that he weighted a couple countries in the book so heavily, without it being referenced in the synopsis. I would have expected more references from a wider variety of places, or the primary emphasis to be about the country he lives in. I find it interesting to hear about other cultural experiences. The problem here was the lack of planning/organization/balance and seemingly confused vision about what this book wanted to be. It felt like he threw together disparate research he had already completed, rather than carefully planning a book. That being said, 3 stars because the book was dense with information about the history of ASD as a diagnosis and how it relates to different parts of social structure, and some exposure for the families of ASD children. Overall, I feel like his impression of what ASD is, and how it affects people is limited. I would never want my autistic children to read this book, and think that this guy's cumulation of stories is the total of what the autistic experience is for themselves or the people in their lives.

[Kayla Shields · Rating 3 out of 5]

What I learned:
And epidemic is not what we know it to be used in modern day language. It is supposed to represent an increase in rate of a diagnosis at a particular time. In Africa diagnosis of Autism is thought to be an evil spirit inhabiting the child because of a wrong doing by ancestors. In India there is a close nit relationship between mother-child and there are sparse professionals who will actually diagnose autism. In Korea there is a huge stigma with autism so much that the extended family and society disowns the child. Their property value may decrease, may not bring their child in public, and may not be able to have a sibling of a child with autism marry because of the shame and low status that comes with diagnosis. Possibly the most beneficial way for someone with Autism to live a meaningful life is to have a role/job in their community in which they have purpose. Last quote from the book, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has” - Margaret Meed

[Sheu Quen · Rating 4 out of 5]

The first 7 chapters were difficult for me as they mostly covered the statistical analyses of autism and other mental health disorders in America and the world.

Subsequent chapters were easier to relate and resonate with as the author began to talk more and expand on the livelihood of his daughter Isabel who is autistic.

I'm autistic as well, having received my diagnosis in 2022 and reading this book has helped me understand myself further and how sometimes, the triggers and symptoms I have can inadvertently affect those around me.

[Brenda · Rating 3 out of 5]

The focus of this book wasn’t quite what I expected. I expected more discussion of the various habits and challenges an autistic person and their family faces. There certainly was mention of habits and challenges, but I felt the focus of the book was more about the history of how Autism became a diagnosis and the history and anthropology of how autistic people are treated. The author talked quite a bit about how the families need to be very strong advocates for their autistic children. Overall, it was informative, just not what I expected.

[Nelia · Rating 4 out of 5]

Dr. Roy Grinker, himself the father of an autistic daughter, makes a logical and convincing case that we do not have an autism epidemic. The population percentages of autistic people have remained the same, but they are now diagnosed correctly, as our knowledge and recognition of autism has greatly increased in the last 25 years.

[june rivinius · Rating 4 out of 5]

The book dragged a bit at times and I had to encourage myself to keep reading. However it was a comprehensive book on autism. His perception that the so called epidemic is really a result of better diagnosis and awareness is thought prevolking to me. I especially enjoyed his discriptions of experiences with his daughter and others with autism.

[Brenda Stahl · Rating 4 out of 5]

An anthropological look at autism, through the eyes and words of a psychotherapist, a father of autism and a man in this current world of dictating political agendas, popular views and science (or lack thereof) to back up propoganda or even grease the wheel of why? For those of us who deal with this everyday.

[Kira Barnes · Rating 4 out of 5]

I want to give this a 3.5. It's a very informative summary of the research on autism up to 2007 and provides great cross cultural insights. It is a product of 2007-2008 though, and was written with AS funding and uses person-first language. Grinker has since changed his use of terms as his latest book reflects. This is definitely worth reading.

[Corinne Yee · Rating 2 out of 5]

My low score is mainly due to the ableist language which is dehumanizing to autistic people. It is also heavily outdated in its perceptions of autism. However, the anthropological elements were interesting and I did find some value in learning what it is like being a parent to an autistic child in other countries.

[Erin · Rating 3 out of 5]

There are a lot of old-fashioned beliefs in here, which may have been cutting-edge when this book was published in 2007. It's fascinating to see how much the autism research has changed from then to now. I was especially intrigued with Grinker's account of the history of the autism diagnosis and how it has changed over the years.

[Ellon · Rating 2 out of 5]

*I only read about half this book as part of a graduate class*

The parts I read were pretty informative but the writing style was a bit dry. It had useful information included with Grinker's personal experience with his daughter who has ASD. At times, he rambled a bit about side stories.

[Alyssa · Rating 5 out of 5]

An excellent overview of the history of our understanding of autism as well as a personal look inside the author's experience with his daughter. Highly recommend!

[Anita · Rating 3 out of 5]

A study of world reactions to autism and a father's struggles and successes with his daughter.