In a Different Key: The Story of Autism

by John Donvan, Caren Zucker

Nearly seventy-five years ago, Donald Triplett of Forest, Mississippi became the first child diagnosed with autism. Beginning with his family’s odyssey, In a Different Key tells the extraordinary story of this often misunderstood condition, and of the civil rights battles waged by the families of those who have it. Unfolding over decades, it is a beautifully rendered history of ordinary people determined to secure a place in the world for those with autism—by liberating children from dank institutions, campaigning for their right to go to school, challenging expert opinion on what it means to have autism, and persuading society to accept those who are different. 

It is the story of women like Ruth Sullivan, who rebelled against a medical establishment that blamed cold and rejecting “refrigerator mothers” for causing autism; and of fathers who pushed scientists to dig harder for treatments. Many others played starring roles too: doctors like Leo Kanner, who pioneered our understanding of autism; lawyers like Tom Gilhool, who took the families’ battle for education to the courtroom; scientists who sparred over how to treat autism; and those with autism, like Temple Grandin, Alex Plank, and Ari Ne’eman, who explained their inner worlds and championed the philosophy of neurodiversity.

This is also a story of fierce controversies—from the question of whether there is truly an autism “epidemic,” and whether vaccines played a part in it; to scandals involving “facilitated communication,” one of many treatments that have proved to be blind alleys; to stark disagreements about whether scientists should pursue a cure for autism. There are dark turns too: we learn about experimenters feeding LSD to children with autism, or shocking them with electricity to change their behavior; and the authors reveal compelling evidence that Hans Asperger, discoverer of the syndrome named after him, participated in the Nazi program that consigned disabled children to death.<

Genres: Nonfiction, Autistic Spectrum Disorder, Psychology, History, Science, Medicine, Health

688 pages, Hardcover

First published January 19, 2016

Reviews

[Lark Benobi · Rating 5 out of 5]

I enjoyed reading In a Different Key a great deal, and I learned a lot from it. The authors cover a huge amount of territory, from the first person who ever received a diagnosis of "autism" to the latest thinking about what is now known as "autism spectrum disorder." The book is written with great compassion and meticulous care.

What this book did for me was make me realize (once again?) that 99% of what we all know to be "true"about autism is actually the result of flawed thinking, combined with the egotism of a handful psychiatrists,human greed, media frenzy, and the force of loving, desperate parents looking for any way to help their child. This history is a story of people lurching from one explanation to another with horrifying rapidity and along the way doing terrible harm to children and their families.

I've lived through many of those explanations for autism myself. A friend's brother was sent away as a child to live with Bruno Bettlelheim, who in the 60's convinced everyone that autistic children had been emotionally abused by their mothers.

Then came the era of Applied Behavioral Analysis, where children were in the early days punished for doing the wrong thing--slapped or given electric shocks to persuade them to behave--and everyone believed in ABA for a while, and it still has its proponents today, especially as the negative reinforcements are replaced by more positive reinforcements. It's still a therapist-centered approach, though, that assumes the child is cognitively able to make the right choice--otherwise it's deterministically Pavlovian.

Then came the "Vaccinations Cause Autism" decade, a debacle that funneled millions of dollars of research money away from any meaningful research into the causes of autism.

And now we're in the "It's their Brain Chemistry" phase, where autistic children are medicated as a matter of course, even though there is no empirical data, and I really mean no empirical data, to show efficacy of any medication for the treatment of autism. The authors don't cover this area of current controversy, and I wish they had.

A particularly sobering message in this book is how the "autism epidemic" -- the abrupt rise in diagnoses over the past two decades -- takes as its starting point a survey conducted by just one researcher, working in the UK, who decided to draw a line somewhere on a list of children about what to call "autism" or not, knowing how arbitrary his judgment was and wanting to only capture the most severe of severe cases. His dart-throw about what to call "autism" and to include only the most severe cases became the base percentage from which all other estimates of the apparent rise in autism are based, even though the definition of "autism" has become far more expansive over the years.

Although it's a long book, it reads easily. If anything I felt rushed through many topics rather than bogged down by too much information. Some of the things I learned didn't shock me--for instance, I learned how egos of a few men looking to make a name for themselves in the history of psychiatry managed to harm children and their families over and over again with unsubstantiated theories and destructive therapies. Some things did shock me--I was stunned to learn that until the passage of the Individuals with Disabilities Education Act (IDEA) in 1975, any child that a given school district deemed "unteachable" could be sent home for life, or institutionalized if parents couldn't afford to care for them at home...no one gave a second thought to it. No one believed these children had a right to education.

Highly recommended for anyone with an interest in not just autism but also in human rights, child development, the history of psychiatry, and public policy.

[Teresa · Rating 4 out of 5]

"If you've met one person with autism, you've met one person with autism". The same applies to books about autism.

I've read lots of books related to autism, from fiction with quirky protagonists with autistic traits to handbooks written by specialists and memoirs and guides from those on the autistic spectrum. All of them have helped in different ways with how I deal with the challenges autism presents me with on a daily basis.

This is the first, "definitive" story of autism I have encountered and initially, its very size was daunting. However, it turned out to be an immensely readable and interesting tome. Focused on the history of autism in the US, it's not a guide to autism, it doesn't provide any answers, it wouldn't be a recommended read for those starting on the autism "journey" but, for me, 10 years down the line, it was a very thought-provoking read.

Just as there are many different facets to autism and its wide and varied spectrum likewise there are so many views on possible causes of autism, suitable treatments or indeed if we should take the view that treatment is desirable in an age of neurodiversity. Autism is an emotive subject and the authors have done well to tread a balanced path through its history including discredited theories, opposing support groups and charities at loggerheads with each other.

There is also hope and optimism here by recording the progress made in securing meaningful education for autistic children who were once abandoned in mental institutions. There are interesting anecdotes about autistic individuals including the story of Donald Triplett, the first person to be diagnosed with autism back in 1943. Some people are focussed on finding the causes of autism, others searching for a cure but perhaps the most important thing is to raise awareness of autism and even though the primary focus of this book is the US experience of autism, it provides a great deal of insight into a lifelong disorder which affects many families worldwide.

[Spider the Doof Warrior]

I'm not hearing good things about this. The way a lot of non-autistic people look at autism is different than how autistic people look at it. Like they may consider stuff like ABA to be useful and helpful while autistic adults who went through it report PTSD from it. They see things like stimming as bad habits that need to be stopped, but autistic people find it comforting. Or lack of eye contact equals not listening to the person or being in their own world while a lot of autistic people say it's difficult and painful.
In other words, there's no point in looking at autism ONLY from the perspective of parents and so-called experts who have no idea what it feels like to be autistic. Who won't listen to autistic people about what we want to call ourselves.

I don't know. Neurotribes is looking better to me. I'll read that first because what I'm hearing about this one is not endearing it to me at all. Autistic people are just not the things a lot of experts say they are and I should know because I'm autistic!

[Sarah · Rating 1 out of 5]

Awful, dehumanizing book. Presents abuse, torture, even murder of disabled people as "love". Makes every excuse for unfit parents while demeaning and dismissing self-advocacy in all forms.

You won't learn much about autism from this massive tome. But it does serve as an excellent study in narcissistic parenting. So there's that.

Some Relevant Links

"One consequence of Donvan and Zucker’s stigmatizing approach to autism is that, by definition, any effort to eliminate autistic traits is seen as noble and beneficial. This is where the book loses its ethical footing: by shoehorning autism into the role of villain, the authors are rejecting the sort of cautious, sensitive distinctions a subject like autism requires."
In a Different Key: One (Deeply Flawed) Story of Autism by M. Kelter

"But this was only the first of numerous – too many to count – anecdotes about autistic children which described them repeatedly as odd, strange, violent, disconnected, destructive, dangerous, difficult to handle, their behaviors meaningless, their interests obsessive. [...] These are the words that Donvan and Zucker use to perpetuate a tragedy narrative that is meant to justify every horrible thing that will be done to these children by parents and professionals."
Cognitive Dissonance In A Different Key by Erin Human

"But reading the description of the exchange, I’m left with a feeling that Bell, and, by extension, the authors who carry her words, feels a strange sense of entitlement to define the public conversation on autism without interference from autistic voices.
"They seem almost scandalized that someone is disagreeing with them in public.
"One is left with the impression that an autistic person expressing a strong contrary opinion is mind-blind, whereas a researcher or parent who does so is merely passionate."
Response from Ari Ne'eman, Founder of The Autistic Self-Advocacy Network

"It's distressing to watch Donvan and Zucker actively ignore the ways in which autistic self-advocates are taking the lead and changing the world for the better -- not just for the 'high functioning' autistics and neurodiversity movement leaders Zucker and Donvan ignorantly or willfully characterize as being so unlike my high-support son, but for autistic people of all ages and abilities."
When The Wrong People Write About Autism by Shannon Des Roches Rosa, Senior Editor at Thinking Person's Guide to Autism

[Ellen · Rating 5 out of 5]

In a Different Key: The Story of Autism by John Donvan is a fascinating review of the history of the diagnosis of autism, the rise of advocacy groups and the movement for neurodiversity. From Donald Triplett, the first child diagnoses by autism pioneer Dr. Leo Kanner to the vaccine wars, the rise of the parent advocacy groups CAN, NAAR, and Autism Speaks, to the members of the autism community, people like Temple Grandin, Donvan provides up-close examinations as well as general overviews of the history of how autism came to be seen, diagnosed, and, at this present time, one of the most discussed of psychological conditions. Donvan presents in-depth pictures of many of the people active in the autism community over the past hundred years.

In a Different Key, at over 600 pages, is exhausting as well as exhaustive, but provides a tremendous amount of information about the disorder and the people who have been affected by it. The medical community's responses and involvement is described and the role of parents in forcing them to pay attention to their affected children is movingly presented. I have read a great deal recently covering similar ground (Neurotribes and the relevant chapter in Far From the Tree, both wonderful works as well) but Key provides a slightly different look at the material.

I strongly recommend this book to anyone interested in the history of autism, the power of parent advocacy groups, or the various treatments that have been developed to treat autism (both mainstream and fringe). It is a continuously interesting and absorbing work.

[Haley · Rating 2 out of 5]

This book had it's good points, but those were overshadowed by its problems.

The book shares many stories of families who have a child diagnosed with autism. Notice that I said families and not stories about autistic children. In many of the stories within the book, I noticed that there was a heavy focus on the emotions that the parents of the autistic child were feeling and very little said about the autistic child's own feelings. This is probably something many people wouldn't notice, but I was watching carefully to see how these stories would be presented precisely because of something that annoys me frequently (and that I've heard autistic people themselves cite as a problem): There seems to be far more focus on how the families of autistic children feel than there is on how the autistic children themselves feel.

None of that is to say that the families' emotions aren't important as well. It's the noticeable lack of a focus on the autistic children that worries me. Because of the nature of autism, I understand that the children's emotions are seen as difficult to understand, but if anything, that makes trying to do so more important. The impression that constantly discussing family members' emotions and not the autistic person's creates is a sense that the autistic person is either not feeling anything at all (a dangerous stereotype) or that their feelings are unimportant.

Because of this same focus, there is little said about why autistic kids behave the way they do despite this being an entire book devoted to autism. You can read this entire book and see how autistic children act but still not understand why they behave that way. There's little to no effort made to explore what is happening in an autistic person's mind, how they are interpreting the world, and, therefore, why they are acting in certain ways. Instead, you only get the shallow surface level of, "Here are stereotypical behaviors of autism. Who knows the actual source of these behaviors?"

(Also, yes, I'm using identity-first language in this review because that's the language preferred by many autistic people themselves. The argument for identity-first language also makes more sense to me. The book uses person-first language in case you were wondering. For more on what I'm talking about, I'll point you to the Autistic Self Advocacy Network.)

There is a part of the book that describes the story of a father killing his autistic son. It unnerved me how the book discussed this. The father is described as a sympathetic character who was trying to help his child, and the book actually takes on an "any parent with an autistic child would understand his decision from an emotional standpoint" tone that's disturbing.

Towards the end of the book, there is some discussion of the neurodiversity movement, but there is never anything said about what the movement actually is. All you'd really know after reading is that autistic people themselves lead the movement and parents of autistic kids typically don't like it. Essentially, that's all you're given. There could have been a much deeper exploration of the topic, especially since it's such a big one right now. This is especially frustrating considering the amount of pages given to the anti-vaccine crowd when their point-of-view holds no water. (The book doesn't defend the vaccine argument. I'm merely complaining here about the amount of pages given to vaccines versus neurodiversity.)

What bothered me more than anything else in the neurodiversity section, though, was something said about an autistic person and advocate within the neurodiversity movement. The book tells the story of the mom of an autistic child confronting an autistic person. (This story is told from the mom's point-of-view because, as I've said, the book doesn't like to get into autistic people's heads and get things from their point-of-view.) The mom doesn't agree with the neurodiversity movement, so she the autistic person. We're not given any specifics about what they say to each other, just that they both describe their own beliefs.

What we are given is the mother's thoughts on the autistic person after they speak. She dismisses his entire argument because she believes that he lacks empathy. This angered me for a number of reasons. For one, there are plenty of autistic people who will insist that they do feel empathy; the difference is that they don't express it in the ways non-autistic people do.

In addition to that, this section of the book is the closest we get to hearing an autistic person's own view on autism, and we don't actually hear anything about their view. We just have their view dismissed because they "lack empathy". Since this is widely considered an autistic trait, it's incredibly convenient if you can dismiss anything an autistic person says because they "lack empathy". In fact, it seemed to me to be utterly lacking in empathy to dismiss someone's argument in such a way. It gives all non-autistic people the license to never listen to autistic people and that is a worrying road to go down (but also one that we seem to already be on).

Of course, as this is a book about autism, Autism Speaks is discussed. While the book doesn't present Autism Speaks in an entirely positive light, they also don't go into all of the controversy surrounding Autism Speaks, only a very small portion of it. Because of that, I don't believe many people reading this who don't know just what is wrong with Autism Speaks would actually understand the issue after reading this book. This is another area where the book would have greatly benefited from focusing more on what autistic people themselves have to say as there is such vocal opposition to Autism Speaks within the autistic community. (Receiving the amount of backlash towards your organization from the very community you're supposedly helping as Autism Speaks receives from the autistic community is never a good sign.)

Overall, this book gave me the same impression that a lot of mainstream autism activism gives me: They are far more focused on the non-autistic people who are around autistic people than on autistic people themselves. The book would have benefited from trying to look at autistic peoples' experiences instead of just their families' experiences, trying to understand why autistic people act the way they do, and actually sharing what autistic people have to say, not just what their parents have to say.

I received this book in exchange for an honest review through Blogging for Books.

[booknuts_ · Rating 5 out of 5]

At first, I was hesitant to read In A Different Key due to some of the negative reviews. Having two Autistic Nephews and one Autistic Niece, I was afraid I would personalize the abysmal care that was given to patients at the Institutions. After reading the book I can say that ignoring those reviews was the best thing I did.

I think some people went into it expecting a first-person narrative, not knowing it was a historical timeline of the major milestones, from 1930’s going into 2013. Donvan and Zucker have clearly done their research and it shows. The subject of Autism and Asperger’s is such a delicate subject to approach and they did it with concern on the subject matter and approached it as delicately as one could.

Are there therapies that were used that were abysmal, yes. I believe though that we need to know what was tried and the horrible aspects of it so that history will not repeat itself, in ignoring the past we are only doomed to repeat the failures in the future. The authors approach each therapy by going into the details, but not subject the reader to an overload information.

The number of things I learned from In A Different Key was astounding. My family has read numerous books regarding Autism, most of them from parents, advocates, doctors and ones who are Autistic themselves. There was nothing out there that basically shows some sort of timeline in how the name Autism or Asperger’s came into play. This book has so many key points in it, even as far back as five hundred years ago, in what people called “Holy Fools”. Then moving through to 1910 when the term “Autistic Thinking” was coined by Dr. Bleuler. From there it goes through numerous other areas, like Institutions, Refrigerators Moms, LSD, the different advocacy groups formed, the development of ABA, the Epidemic of Autism, vaccines and today’s therapy.

I recommend this book to everyone, including those who do not have or do not know a child affected by Autism or Asperger’s. It really has opened my eyes to how far the diagnosis has come and yet how far we have to go.

[Matthew Henken · Rating 1 out of 5]

Ugh. I was looking forward to reading this very much. I am interested in autism as a psychological, medical, and social phenomenon and the reviews for this book have been outstanding.

I was extremely disappointed in this book. The writing as a mechanical matter was fine, but the book read like a (vastly) extended magazine article of the middling sort. It narrates event after event and dispute after dispute without (seemingly) any interest in probing beneath the surface or considering the hard questions.

For example, there are many discussions of parents and governments disputing over who will pay for the provision of services to their children. The story is told from the parents' point of view that the government doesn't give money either because they are stingy or because they don't understand how much help they need. The book, however, doesn't even ask about the other priorities of those government agencies have been directed to follow and certainly doesn't provide an opportunity for government representatives to explain how it would affect their ability to serve other social priorities if they provided to parents of autistic children all the services they believe their children need. I'm more interested in the rights and wrongs and the conflicting interests leading to the winning and the losing in the contest, not just who is winning and losing in the quest for funds. The book, however, really has nothing to say about this topic that takes up maybe half the book.

As another example, in the discussion of "neurodiversity" a movement spearheaded by some very articulate people at the far end of the autism spectrum who believe that autism is a core part of their identity and thus resist the search for a "cure" as an effort to erase them and their "kind." Again, this book primarily adopts the point of view of the parents of children with much more severe handicaps as a result of their autism and notes that the neurodiversity position is much easier to believe in when you are an autistic person who is also college educated, highly articulate, and professionally successful. What a fascinating clash of viewpoints! It sure would be nice if this book would have actually delved into this clash, put this response to the neurodiversity proponents and let them respond so we could get a sense of the real meaning of this dispute. But, alas, this book is (as always) content to point out that there are these opposing camps without providing any substance.

Finally, this book provides no insight whatever into what autism is like from the inside. It doesn't even ask the question. Insight into psychological conditions not shared by the reader are often difficult to gain and communicate, but terrific books like Noonday Demon (about depression) can communicate a truly harrowing sense of what it is like to be depressed. That's what makes psychological conditions so very interesting: What it's like to be autistic is different from what it's like to be neurotypical. But in what way? How do the interactions of people look to you if you are autistic. What are the things that stress you out about being with other people? What is the soothing you get from repetitive motions or memorizing the details of something you're interested in? These are the questions that recognize that autistic people are *people* who have rich inner lives we want to understand.

But the book shows no interest in helping us understand the human, internal situation of the people who are the subject of this 700 page book. Why not?

[Ariel · Rating 5 out of 5]

This was one of the best books I have ever read. I have friends with children on the spectrum, I have a family member on the spectrum, and I work in an elementary school with kids on the spectrum. I picked this book up to learn more about a condition that I encountered all of the time but besides what I had personally observed, in reality I knew very little about it. I was initially daunted by the heft of this book but after reading it I wouldn't have deleted a word. It left me wanting to know even more. Far from being dry this was an extremely easy to read book that covered any question you ever had about autism. The author told the most fascinating stories as the narritive traveled the time line from Donald Triplett, case 1, until the present day. Along the way we meet heroes (Dr. Leo Kanner) and villains (Nazis!), and people who didn't know what they were talking about and really should have just shut up. This book is an important work because we have too many people in power making decisions for the disabled that don't know what they are doing. Case in point Rosalind Osgood, the unsympathetic lady on my county school board who threatened to throw parents out of the school board meeting because she didn't like their tone. Their crime was trying to advocate for their autistic children. http://www.sun-sentinel.com/local/bro... This book should be required reading for every public school teacher, principal, and policy maker.

[Ja · Rating 5 out of 5]

What is autism?

You think you may know the answer, and you probably do. At least on the surface. The answer to what autism is, its history, and its divisive battles, In A Different Key offers readers a satisfying and enlightening account of the various perspectives of autism. As an educator myself and someone who works with people with autism on a daily basis, it was extremely heartening to learn so much about this 'condition' that I didn't know that I didn't know.

Written by two journalists, John Donvan and Caren Zucker, the reader is at once welcomed and taken on an unexpected journey that spans hundreds of years in autism's history. I say unexpected because I was expecting the dry, academic type of writing that I thought would be associated with a story on autism. Instead, I was greeted with narratives that pulled me in and kept me along for the ride. As the narrative unfurled, I began to see how key players in the world of autism showed up in one another's lives and played integral roles to the development of both causes and debates.

Although a bit lengthy, it reads much quicker than one might anticipate due to its readability. As the conversations about what autism is, what causes it, and whether it should be cured are still going on, this is not a encapsulated history. It does catch the reader up to speed up until present day 2015, while acknowledging that there is continued hope for progress in the arena. As awareness of neurodiversity expands in the public sphere, it is ever more important for everyone to understand the story of autism.


**I received an uncorrected proof of the book from LibraryThing's Early Reviewers program.**

[Brittany · Rating 5 out of 5]

What a tome of a book. The research that went into this book is deserving of like 26 stars, so I can't fault the authors on that point. Ultimately, this was a very interesting read on the history of autism that is interspersed with personal stories of people with autism or people who are affected by it. It's a great (if very long) read if you're interested in the subject matter.

[Edit] I'm changing my review from four stars to five stars. I've thought about this book a lot since reading it, which is a common hallmark of books I was too harsh on when rating them.

[Carol · Rating 5 out of 5]

I made a difficult decision when I decided to read In A Different Key: The Story of Autism by John Donovan and Caren Zucher . My brother is severely autistic. He was born in 1955 when I was nine. I am going to do this review in a very personal way, through my own experiences.

The authors started this history of autism with the first boy diagnosed with it. That boy, Donald Triplett had well educated parents, like mine but they were wealthy unlike mine. The biggest difference outside of the fact that they could afford to try anything to help their child was that he was born in a time when there wasn't even a name for it. They realized that he was different, many of his behaviors were my brothers.

But my brother and others had the unfortunate luck to be born in 1955. He was taken to many doctors and had many tests. The worst was that when Dr. Bruno Bettelheim (his doctorate was in art history) came up with his theories which were not based on science at all. I vividly remember the day that my father, a doctor and my mother, a teacher, returned home from a doctor's appointment. That is when their doctor broke the news to my mother and father that instead of being the warm and sweet mother that I knew, she was a "cold refrigerator mother". I vividly remember her fleeing from the front door, tears pouring down her face to the kitchen. When my told me what the doctor had said, I knew that there was no way that it could be true!

Through the years, I have kept up, reading many of the books referred to in this book. I remember the vaccine controversy, and loved Temple Grandlin's books. I remember that my mother was at the signing ceremony when the governor of our state signed the bill that my brother, and others like him, could not be excluded from school because he is autistic. I wish that my brother had been born to rich parents so he could have the best opportunities available. Donald Triplett was still autistic when he died but he died a happy man. My brother is only happy once in a great while.

If you have a relative who is autistic, please read this book.

I received a finished copy of this book as a win from FirstReads from the publisher but that in no way determined my thoughts or feelings in this review.

[Kara · Rating 2 out of 5]

In a Different Key: The Story of Autism is an incredibly detailed history of the activism of parents of autistic children and adults to increase the resources available in our society for those affected as well as educating the public about this spectrum of conditions. However, a significant weakness of this work was the focus on the struggle of parents of the autistic at the expense of a focus on the activism and perspective of autistic people themselves. Frankly, I found this disparity very disturbing and would refrain from recommending this book to other readers on this ground. Please be advised I received a copy of this book from the Reading Room Giveaway program in exchange for posting this honest review.

[Lp1989 · Rating 2 out of 5]

NB: I am reviewing this at the same time as Neurotribes and will occasionally be drawing comparisons.

IADK compared to NT is well meaning enough but suffers from a simplistic premise - namely the fact that the authors are working from a medical model of ASC with an emphasis on parental advocacy and biomedical intervention - often with the aim of producing genetic markers to allow for pre natal screening - at the expense of the viewpoint of autistic adults, self-advocacy, and the social model of ASC. The end result is something that is not only very demeaning and patronizing to those on the spectrum (whatever their level of support needs, age, gender, ethnicity, and socio-economic status), but also perpetuates a number of harmful stereotypes - ones that ultimately harm those that they claim to support and is actually detrimental to parental and family advocacy as well.

The root of this, I think based on what I have read in interviews that Donovan and Zucker have family members who are Autistic and this is the approach that is the most natural to them (Donvan's brother inn law and Zucker's son Respectvely). They're also critical of Neurodiversity and the perception that its detrimental to more high Support autistics as they "can't speak for themselves" and that it downplays challenges and problems of High Needs Autistics, as well as criticism of the spectrum concept, which may explain the attacks on Hans Asperger compared to the relatively indulgent treatment of Leo Kanner and Ivor Lovaas (see below). ND has its flaws and there should be nothing wrong with constructive debate and exchange of ideas; this does not, however justify insulting people like Jim Sinclair and Ari Ne'eman along with whitewashing the very real ethical problems of programs like ABA. Ultimately, intentionally or otherwise, IADK is an apologia for misguided and often downright harmful interventions - and in some cases murder, in the name of "love" and "normalization" (don't be me started on the manipulative language in this book)

D&Z needed to give their book a point of difference from the (superior) NT that was released a year earlier. NT also has its problems but was widely praised for a good reason. It was a genuinely new and fresh take on ASC, one that was hopeful and respectful and placed autistic people themselves as the main voice. It also uncovered some important parts of the history of the creation of the diagnostic category, namely the fact that two of Asperger's clinicians, Georg Frankl and Anni Weiss, also worked for Kanner in his clinic at Johns Hopkins, Baltimore. Kanner in fact had helped Frankl and Weiss (Frankl was Jewish, Weiss Gentile - married couple) leave Austria after the Nazi's took over. Traditionally Kanner and Asperger were said to be working independently and were simply looking at different forms of ASC - the fact there was a link between the two can't be overstated as it raises a LOT of questions about Kanner, his approach and motivations. Questions D&Z don't feel compelled to answer.

This brings me to my biggest issue with the book - about just what Hans Asperger did in the war. Relying on the work of Herwig Czech, who still refuses to make his work public and refused repeated requests from Silberman to share his work and has a long history of "gotcha" style allegations about figures from this period, claims that HA was a Nazi sympathizer and enthusiastic eugenist. Zucker is Jewish and has admitted in interviews that this colors her perception of HA and his work, as it also did for people like LK and Eric Scholper, which had long term impact on ASC and its diagnostic broadness. However, Silberman is also Jewish and his view of HA is very different. Overall the allegations feel sensationalized, lack historical context, and smack of a certain self righteousness that one often sees from Americans (especially those from Jewish backgrounds) regarding Nazi Germany and those who lived under that regime. Until Czech puts his work in the public domain I'm going to reserve judgement. D&Z do cite NT in their notes and bibliography but fail to mention the stuff about Frankl, or make an honest attempt to rebut Silberman's argument - they just ignore it. If you had not read NT prior to reading IADK, the failure to mention this is deeply misleading and dishonest. Shame on you D&Z! Honestly given their stated skepticism about autism as a spectrum condition and ND - both of which derive more from HA's conception of Autism as common, variable lifelong and organic; and not the (initial) view LK had of Autism as monolithic, confined to childhood and a toxic byproduct of modernity, I would not be surprised if by overplaying the allegations about HA's actions during the war, they were unconsciously trying to more broadly discredit the concepts and implications associated with HA's view of Autism - hmm?

On top of that, its too US centric and missing a lot about the policies of diagnosis esp regarding social background, the under-diagnosis of girls and women and the frequent misdiagnosis of people of color. (NT had similar problems but that was a space issue and Silberman often alludes to it in the book and interviews - D&Z just ignore it). Most of the science they cite is outdated or wrong

It's well organised and easy to read and is well documented with a good bibliography. IADK is a good starting point for further work on the history and politics of ASC but for those wanting a History 101 of ASC that gives better insight into the experience of being autistic Neurotribes is a better book. That said, IADK has a lot of good information about parental advocacy and the politics of the psychological profession about ASC. Its also an unintentional insight into the mindset of the parental advocates and in particular the sensitivity and knee jerk animosity many seem to feel when challenged by the self-advocates. When Jim Sinclair's "Don't Mourn For Us" gets dismissed as a rehash of refrigerator mothering and the authors complain of the fact that Sinclair isn't a parent of an autistic child and thus not in the position to understand the challenges they face - despite the fact that Sinclair themself is Autistic - says everything. Much of this has to do with the long baleful influence of the 'refrigerator mother' hypothesis, the stigmatized nature of the term Autism, the persistent erasure of Autistic adults in media and research, and unexamined assumptions about being 'normal'. If you want to know why so many went (and still do) go along with the anti vaccination theory and other bogus claims - this will tell you why. This is why I did not give this one star - in spite of itself it still has some value.

[Fatemeh · Rating 4 out of 5]

من واقعا خیلی دوست دارم بیشتر و بیشتر درباره‌ی اتیسم بدونم. و دردآورم هست که هنوز هیچ قطعیتی براش نیست. از اون بدتر این که توی این کتاب می‌گفت از روش‌های خیلی وحشیانه‌ای قبلا برای بیماران اتیسم استفاده می‌شده.

[Vannessa Anderson · Rating 5 out of 5]

In Forest, Mississippi nearly 75-years ago, Donald Triplett became the first child diagnosed with autism.

In the beginning mothers were blamed for giving their children autism and these mothers were called refrigerator mothers. It took advocates who shared what their inner worlds were liked to lead the fight for equality for Americans with Autism and those dedicated Americans fought the politicians, the medical profession, and school boards to win rights for Americans who live with Autism.

In A Different Key The Story of Autism
Is about the history of autism from 1848 to 2013 and the breakthrough discoveries. In A Different Key The Story of Autism is not only an essential read for parents raising a child with autism but for everyone who is interested in allaying their ignorance on the subject of autism.

I was really shaken over how politicians would allow the scientific and medical communities to treat children with autism and their families. In A Different Key The Story of Autism demonstrates clearly how the medical profession can get things all wrong. They referred to the children as being defective and doctors encouraged parents to be ashamed of their children and to place them in institutions not considering the emotional feelings of the children because they were defective and a menace to society.

Quotes

--The American public is taxed, heavily taxed, to maintain an increasing race of morons, which threatens the very foundations of our civilization—Margaret Sanger

--Nature’s mistakes deserved relief from the burden of a life “that at no time can produce anything good at all.” –Robert Foster Kennedy, neurologist who also argued for painless methods of killing and spelled out a careful selection process

--The fact that a child comes into the world as a Negro does in no way serve as a barometer for his intellectual potentialities –Leo Kanner, child psychiatrist, Johns Hopkins who discovered autism

In A Different Key The Story of Autism was an easy read and should be a required read.

[Mary · Rating 5 out of 5]

This book is an absolute marvel. It does for autism what "The Emperor of All Maladies" did for cancer--it's essentially a biography of this disease (can we even call it that?) that has befuddled people for going on a century now. This is not an easy read: though exceptionally well-written, it is dense, and the players--both the doctors and the families--are plentiful and easy to get mixed up. (The chronology at the end serves as a nice summary/reminder--that was a great touch.) I'm wondering if people who aren't so intimately connected to autism would have the same patience I did to read (listen), constantly enthralled, peeling away the social and medical and public health layers of this topic that has generated so much debate and so much vitriol from all sides. I nearly cried several times reading the section about the development of ABA therapy. Again--would these stories be as impactful to people who have NOT, as I have, witnessed first-hand the miracle of this therapy in their children or loved ones? So much of this book--the struggles between parents and teachers/daycare providers, the overall lack of knowledge of pediatricians who can (and should) be the parents' best advocates in early detection and testing, the day-to-day, fight-to-the-death battle autism parents wage to help their children be included in a society that is stacked against them in every way--resonated with me so strongly. I'm too close to the subject matter to be able to say, objectively, that this book will be moving and affecting to others in the same way that it was to me. The authors leave no stone unturned, diving into every nook and cranny of this disease with measured, balanced reporting. (The later chapters about vaccines and the more recent neurodiversity movement were particularly illuminating, as they reflect and make sense of so much of what's happening around us currently.) But I loved every page of this book, and I'm grateful for the way in which it serves to so thoroughly, and so decently, unpack a condition that is so fraught for so many people.

[Jessica · Rating 5 out of 5]

I feel I must give the warning that the way most of the population with autism, and most people with mental disabilities, have been treated in the past was awful until recently. This book is about that history. We have come a long way from what used to common in terms of care and treatment of this population, we still must continue to move forward. In order to do so I feel it necessary to learn the history. This is a great place to start.

This is respectfully told, as respectful as possible considering the horrors of the past. There is a lot to be learned here. Much of the population that has experienced these things are still around, this helps to understand the reasoning behind so much of what I experience when working with my older individuals at work. I really like that this big book was not filled with a ton of medical information.

I really recommend this book to anyone interested in this subject.

[Carol · Rating 5 out of 5]

Received as a GoodReads giveaway. I'm not a psychologist, not an autism expert of any kind, just an interested individual with extended family members on the autism spectrum. So when this hefty book arrived, I worried about being swamped with medical jargon and dry discussions of research papers. It turned out to be a very readable book focused on the human face of autism, with stories of the patients, families, doctors and others involved in autism diagnosis and treatment since the 1930s. From my layperson viewpoint, it was engaging, educational and often touching.

[Rachel]

i've heard this book centers the families of autistic people rather than autistic people themselves, as well as advocating for aba therapy which amongst the autistic community has been compared to torture and conversion therapy. i live my autistic life every day, and while i would be interested in the history of my brain type, i also would rather read it from an autistic author rather than an allistic.

[Lana · Rating 1 out of 5]

Another horrible book written about us without us. This time by murder apologists. Books like this are directly responsible for the ableist mentality that contributes to violence against autistic people. Do yourself a favor and read War On Autism by Anne McGuire instead to learn how these kinds of narratives are literally deadly. And if you want to learn about autism, learn from the REAL experts, #ActuallyAutistic people.

If I could give negative stars, I would. Burn it with FIRE!!!

[Ben · Rating 5 out of 5]

More books like this, please. I was already familiar with most of the people/events/trends and still liked listening. This book is comprehensive, even-handed, and detailed. It's a history book, so it's not at the cutting edge of advocacy or reseaech, but it's a good history book.

[Patrick · Rating 5 out of 5]

My son has non-verbal autism, so I spend a lot of time thinking about what life must feel like for him. I once did an empathetic experiment with my daughter, who is only a year older than my son, to try and help her understand how hard things are for him. She had to go one hour without speaking, and only use non-verbal cues to help me understand what she was thinking and feeling. She made it less than 10 minutes before she broke down in tears, saying it was too hard and frustrating. My son obviously doesn't have that option.

And yet, you'd be hard-pressed to find a happier, more delightful kid. He finds joy in everything, and he lives his life to the fullest every day. He lives in the moment, and takes immense pleasure in the mundanity of every day life. Every time he eats his favorite foods, it's like he's tasting them for the first time. Every time he watches a Yo Gabba Gabba cartoon, he smiles, laughs, and jumps around like it's the best thing he's ever seen, regardless of how many hundreds of times he's seen it already. He has a natural joie de vivre that I genuinely admire and strive for in my own life. As corny as it sounds, he really is my hero, and if he wasn't autistic, I don't know who he would be. But he wouldn't be the son that I love and admire.

But autism is still such a mystery, even to those of us who deal with it in some way on a daily basis. So for that reason, I was on-board with this book. It gives a painstakingly detailed, balanced view of exactly what it purports - a history of our understanding of autism over the last 100 years or so. Donovan does a great job sticking to the facts while also presenting the stories of many of the prominent and/or interesting people who have played large roles in autism research and awareness over the years. I was stunned by how little I knew.

I've seen some reviews on here from people on the spectrum who bailed on the book early because it felt biased, treating autism as a 'disease' that needed to be cured. I can understand how hurtful that could feel to someone like my son, and I empathize with that feeling. But, in fairness to Donovan, he actually does a great job of highlighting the more recent spectrum pride movements and always treats the subject matter with a journalistic integrity. The truth is, when it was first recognized, autism was even less well-understood, and there wasn't much to have pride in. It was hard for both the people diagnosed with it and the parents and family member as well. It was heartbreaking to read in detail the struggles of the families dealing with autism in the early days. The story of the father who "mercy" killed his son before committing suicide was particularly painful, but it was truly a different time and a uniquely different challenge. I empathized with everyone involved, and consider myself incredibly fortunate to be taking this journey with my family in the 21st century.

It's not an easy read. It can be dense at times, though not through any fault of Donovan, who does an incredible job breaking down what can be complex medical research. But there's a lot of data, a lot of names and organizations to keep track of, a lot of moving pieces. But that density is also what makes it so compelling. Even if I only retain a fraction of the information I learned in this book, I'm going to be more knowledgeable about a subject that is meaningful to me, and a better advocate for my son. I'm very glad to have read it and recommend it for any parent, family member, or friend of someone on the spectrum.

[Judy Lesley · Rating 5 out of 5]

It would be difficult for me to give this incredible accumulation of information any rating other than five stars. Autism has only touched my family in ways which haven't helped me understand what it truly entailed. One of my daughters is a school teacher and the other works with juveniles involved in the court system so I've heard their experiences with children with autism and yet even that didn't give me the full background I was searching for. This book does.

Taking on the story of autism has to have been a daunting experience for John Donvan and Caren Zucker because, as shown by the facts in this book, the facts have been a long time in getting to the knowledge we have today about the condition. Simply reading this book requires a commitment from the reader because even though it is well presented, it is still not an easy story to tell. Beginning in the 1930s and continuing to the present I found out the history of autism itself while still not understanding exactly what it is. That single element in the way this story is told gave me just a tiny glimpse into how frustrated and bewildered parents must have been to see their child exhibit signs of something being profoundly wrong. We tend to expect medical miracles to be pulled out of hats. Not only were there no miracles for families with autistic children but there were also very vew people who were trying to find answers to questions concerning the disorder.

One of the things most impressive to me was the decision of the authors to keep the autism story centered on people instead of making it about statistics and numbers and graphs and charts. Often those elements have a tendency to dehumanize whatever subject is being discussed. With The Story of Autism you will always be reading about those with the diagnosis, about the parents, about the doctors, about the activists, or about the researchers. And even if numbers and statistics come into play in the telling of the story it is usually to show you how misleading and unhelpful those very numbers and statistics can be. Something which came in very handy for me is the timeline for autism which is included in the back of the book. This story is one that necessarily moves backward and forward in time constantly, turning and twisting upon itself in order to explain why a pronouncement was considered so important and how a conclusion was reached. After reading this book I feel I have a very fair representation of the condition called autism and where this story stands today. Where it will go tomorrow, I don't know.

[Brit Miller · Rating 4 out of 5]

I knew that the story of Autism was complicated. I didn't realize how complicated. The story contains terrible abuse, conspiracy theories, bizarre strategies, courageous parents, billions of dollars, arbitrary lines, and baffling mysteries. (please appreciate the amount of adjectives packed into the previous sentence). There were moments in this book that I literally shook my head and said "you have got to be kidding me".
I still have so many questions and I can't wait to see how much more we'll know 20 years from now. Will we still be using the word "spectrum" or will autism have split into several different types? What will the numbers look like? Will terms like "neurodiversity" still be useful? What will alternative communication methods look like by then?

Donovan and Zucker packed a ton of information in this book and the amount of research is no small feat. We're going on 80 years since the first autism diagnosis and it's a lot of time to cover. I appreciated the breadth of the story they told.

Also, while this book did lack real insight or perspective from people with ASD, I don't think that's the story it was trying to tell. This was the story of the diagnosis and the parents, doctors, celebrities, and researchers involved. It's a bit of a history textbook. As with any re-telling of history, some people's stories or perspectives don't get told. So while I do recommend his book, it shouldn't be read alone. Make sure to also engage with material written BY individuals with ASD.

It loses a star simply because it felt a bit sensationalized.

[Alyssa Yoder · Rating 5 out of 5]

Fascinating and engaging and informative. I highly recommend this.

[Christina]

This was really interesting. A reminder how a little glimmer of false hope can create huge problems. I appreciated learning more about the path that led to the false vaccine-autism connection and how it was completely unfounded scientifically. I feel so awful for the parents that were persuaded to put hope in it. It also made me think about how quick we are to slap labels on things and people, how we take all of our shades of gray and pretend they're black and white. The best part was seeing how people with neurological differences and disabilities are being integrated into society more and more, no longer institutionalized. I loved reading about a man in Europe who designed a software company that employs and benefits from autistic designers whose brains do GREAT with this kind of work. It's thick, but I enjoyed it!

[Abby · Rating 5 out of 5]

Totally riveting. I flew through this massive book, which is a history of how autism was given a name and how that name — and the development of the autism spectrum and what that diagnosis entails — has shifted, and continues to shift, from the 1940s to the present. That's the key takeaway: None of this is finished. This is not a definitive history. The authors betray their broadcast journalism roots sometimes (ending almost every chapter's final paragraph with a predictable "hook"), but it worked on me; I read hungrily from chapter to chapter.

I'll admit that I harbored a good deal of fear about autism (and receiving that diagnosis for a potential child), but a lot of that misinformation I was carrying was been addressed by the thoroughness of this book. And while there is still a good deal of fear and grief that confronts every parent whose child receives this diagnosis, there is so much more support and hope now than there ever has been — thanks, largely, to tenacious mothers and the scientists they persuaded to get involved.

[Renee · Rating 5 out of 5]

Everyone should read this book. This is a history, that is our history and needs to be understood. Donovan and Zucker have written a history of Autism that is broad in its scope, using personal stories, early records and the work of the pioneers in this field of study. To read this book is to better understand the complex issues surrounding autism, where the diagnoses came from and how. This is an essential work concerning the treatment of others, and how society defines those who are or seem different. The authors bring forward the various arguments surrounding autism and what it means to be on the spectrum. To read this is to have a new, broader concept of neurodiversity and how we each fit into and on the spectrum - this is about our human diversity, our human frailty, our foolishness and our compassion - this is a forward leaning book and a missing part of the ongoing conversations concerning autism. An exquisite work, well written, well researched, scientific and still accessible. A must read.

[Meghan · Rating 4 out of 5]

Over the decades the way we, as society, have looked at autism has changed. From being a big shame, blaming the mother, to people thinking vaccines caused autism, and everything in between this book tackles it. Starting in the 1930s all the way up to today’s age this has shown how autism has fit, and at times hasn’t fit, into society. This was an eye opening account of the ins and outs to autism. The way the facts were laid out was done nicely. It followed a chronological order and the reader can tell that the authors did their research and that they have a bit of a soft spot for autism. The facts were presented very well and coming from journalists they were able to make it so the reader was never confused or overwhelmed. The small antidotes they used of families throughout was a beautiful personal touch and the fact they were used all throughout the book made it feel like the reader grew with them. This was a fascinating read, although predominately American, they do touch on other countries, it was still an engaging read.