Like how a person who lost a leg might need the disability to be recognised to recieve help such as wheelchairs, wheelchair ramps, etc.
In this case, the affected-by-autism person needs help in dealing with social situations, a special type of help that not-affected-by-autism would not require. Not to mention understanding by the affected-by-autism person's peers.
The term 'label' suggests that the person is being judged and treated as less of a human. Not exactly what we want here.
edited 18th Nov '15 10:33:36 PM by hellomoto
Regarding what you're talking about, autistic self-advocates are trying to reduce the stigma of the label "autism".
Indeed, stigma was precisely why Lorna Wing invented the term "Asperger's Syndrome" and encouraged the people putting together the DSM-IV to label it as a separate condition from autism. Because people would be more willing to seek help if they didn't have to say they were "autistic". It was a way of dodging stigma. By inventing a new label.
But I see your side of the argument as well.
Speaking of labels, one of the people in charge of creating labels for the DSM-IV, Allen Frances, the chair of the DSM-IV task force, had a problem with "pathologizing eccentricity". But he let his colleagues put in "Asperger's syndrome" anyway. That, along with "type II bipolar disorder", ended up being the only two new diagnoses that ended up in the DSM-IV, beating out 92 other conditions that were proposed and failed. Asperger's was indeed real and going unrecognized for a long time, after all. The argument over if Asperger was a Nazi or not broiled behind the scenes, and Lorna Wing put that to rest with a simple answer: "Asperger was a deeply religious man." (This was before we learned that he hated the Nazis and tried to protect his patients from them by telling half truths about autism)
Reading NeuroTribes, the author's opinions became very apparent. He thinks not all elements of autism are bad, and he makes that very clear with this wonderful bit of dripping sarcasm:
Oh no, an average score on a test!! I guess that means this otherwise smart person has a relative deficit! That's terrible! And hyperlexia - oh fuck, my child is talking way above their age level! Call a psychologist, this is an awful symptom! (Is it bad that I could read at age 4? I'd heard that first-grade teachers can't stand kids who know how to read! ![[lol]](https://static.tvtropes.org/pmwiki/pub/images/lol2v12_4863.png "[lol]"){kind=small}
)
edited 19th Nov '15 8:31:56 AM by BonsaiForest
I don't remember when I learned to read, but I remember reading ahead of the class when we were using those readers they give you in elementary, and everyone reads a few sentences before going to Th next person. Some people were just so damn slow, or didn't recognize a period of comma
Oh yeah... I remember that! In third grade, I read so well that I put the book up on my desk so the teacher couldn't see where I really was, and would skip to other parts of the book to read the other stories within. I really couldn't stand how slow the other kids were.
"He's on the wrong page!" "He knows!" - a conversation that took place right behind me, that I still remember to this day
And the teacher always chided me for reading ahead. It was so annoying
My elder sisters chided me for reading their textbooks instead of my own back when I was still in school, yet they still asked for my help when they have problems with their homework.
On a somewhat related note, I ended up teaching my own colleagues and my juniors (which is the result of thesis delay) on molecular symmetry because they don't have the spatial visualization ability of mine. I wondered how I get this ability.
I'm at the chapter about the alleged autism "epidemic". How people came to think it was an epidemic, and how they came to blame it on vaccines.
Heck, that website Age of Autism complained about this book, saying that it was brushing off the idea of an autism epidemic and vaccines causing autism. Wrong. It doesn't "brush off" such concerns. It goes into detail about how such concerns came to exist in the first place, how people came to make the connections between autism and "vaccine injury", and how, over time, they started to be proven wrong. Indeed, it's even sympathetic to their plight. In the absence of answers, parents started to become desperate, and started to try to seek answers of their own. Some kept detailed logs of how their child reacted to X therapy or Y supplement, and tried to figure out what worked and what didn't - which is about as empirical as it gets for the layperson with a sample size of one!
As for the "epidemic"? Greater visibility of autism, and the rise of recognition of less severe forms, both led people to believe that autism was around them. I also believe that fewer autistics being in institutions also made it more visible, thus getting people to think the condition was actually rising rather than merely being concealed or unrecognized (that last part being my own conclusion; the book hasn't stated it, or hasn't yet).
Hans Asperger stated that once you knew what to look for, you began to see autism all around you. Lorna Wing, who created the modern concept of the spectrum, invented the name "Asperger's syndrome", and pushed for "Asperger's syndrome" to be included in the DSM-IV, also believed that.
That said, note what she said about blurring the boundaries between autism and eccentricity. One autism parent turned amateur autism researcher turned trusted expert on the subject (I think it might be Bernard Rimland, but I forget if it was or not), once stated that autism appeared to be a form of incipient intelligence burdened by extreme eccentricities. (I don't have the exact quote in front of me) Lorna Wing once quoted Winston Churchill as saying that nature never draws a fine line, but instead smudges it, and indeed, I think it can be tricky to pinpoint exactly where someone goes from "eccentric" to "mildly autistic". I think if we're not careful, we may way overdiagnose the condition and result in it being taken a lot less seriously, like what's currently happening with ADHD. I read an article that the psychologist who struggled for years to get ADHD to be taken seriously now believes it's horribly overdiagnosed. May the same happen with autism due to poorly defined lines?
edited 22nd Nov '15 9:16:02 AM by BonsaiForest
Now I'm at chapter 11, which I just started, but which appears to be about the growing autistic self-advocacy.
Really, two things in that paragraph stick out. As Temple Grandin gave her first presentation in 1989, a lot of parents learned what the experts of the day couldn't possibly tell them. Empirical observation can tell what autistics do, but it can't tell you what autistics think or what they feel. In more recent years, Grandin has been more vocal on this, saying that scientists should stop "pooh-poohing" the personal experiences of the very populations they are studying, and actually listen instead.
This idea is immediately followed up with the idea that functioning labels are too simple. While I'm still of the belief that they provide a purpose, I can definitely see the flaws in functioning labels.
To be fair, better empirical studies could find that information out. But psychologists at the time weren't asking autistics the right questions, or listening to them. They were coming to their own conclusions based on their observations; conclusions which were sometimes wrong. Listening to autistics could have helped them find a better direction to aim their research.
This is a problem of psychological science in general, not just with autism. To a scientist, if you dont know how to measure a thing, then it isn't real.
Oh yeah, I believe that. I had a doctor tell me that a certain medical condition couldn't be tested, and that I should just assume I didn't have it. Recently, I was tested for that condition with urine and blood cell tests, and found to have it. (I'm not going into detail) I'm in the process of recovering from it now. So, yeah, I've experienced firsthand the "anything I don't know how to measure, doesn't exist" problem in medicine, not just psychology.
Anyway, the chapter I'm on is definitely the chapter about how autistics started speaking up for themselves and telling the fucking psychology establishment was autism was really like. The stigma against autism was massive. Autistics were told it was impossible for them to have empathy, but some of them showed great empathy for people with other disabilities. When Temple Grandin wrote an autobiography, legendary psychologist Oliver Sacks assumed that it was ghostwritten, because the concept of an autistic having introspection seemed ludicrous to him. (To his credit, he later met Temple Grandin in person and started to question his own beliefs about autism.)
The problems with different forms of autism not being recognized - essentially, "Asperger's syndrome" style autism, especially in girls - wreaked havoc on the lives of undiagnosed autistics. One girl was yelled at by her parents "Stop acting so austistic!" when she flapped her hands and did other autism-related things; she wasn't diagnosed by that point. She learned to suppress her symptoms, but doing so took so much effort that she ended up anxious, and it made it harder for her to learn in school. As an adult, she realized she had to either suppress her autistic symptoms or go shopping in public and buy what she needs - and it was impossible to do both, so she eventually shut down. And nobody understood why.
Autistics starting to tell their own stories met with a lot of resistance at first from people who didn't believe they were actually autistic since they didn't fit the stereotypes. How could someone be autistic if they could talk? If they had empathy? If they had introspection? If they were intelligent and clearly capable of learning? If they were articulate?
The earliest English-language news article about "Asperger's syndrome" was written in 1989 in Canada. It described kids who "read books obsessively without comprehending them", were incapable of friendship, and burst into tears and laughter for no reason - a symptom I had in childhood (and there was a reason - it was caused by stress. Think of it as a Tourettes type symptom, and it'll make more sense). Autism/Asperger's was not portrayed positively at all; there was usually no mention at all of special gifts or talents or skills or what Asperger called "autistic intelligence". It was always bad, and often dead wrong in some way or another.
Once actual autistics started coming out and telling their stories, the perception began to change.
edited 24th Nov '15 11:42:32 AM by BonsaiForest
The dad of an autistic boy is writing a YA sci-fi series about an autistic lead character
.
This sort of inclusion is what we need. So often, minorities are treated as background characters in stories rather than made the lead. And autistics in particular are almost never the main character in a work of fiction, as far as I know, unless it's specifically about autism. The Curious Incident Of The Dog In The Nighttime is debatably as much about its mystery as it is about is lead's autism, so that book might count.
So now this man is writing a book series that simply has an autistic lead, rather than being a series about autism itself. He's getting a lot of positive attention for it, with autistic fans thanking him for writing a character they can actually relate to, non-autistic teens saying the books helped them to understand how autistics think, and parents and teachers saying the books help as well.
I might add that, along with things like NeuroTribes, and the increasing number of editorials about autism, the message that autistics need to be understood instead of being forced to "act normal" is getting louder and louder.
Indeed, NeuroTribes gives an example of how autistics were "empowering themselves" by attempting to educate people on what autism is like, rather than forcing themselves to "fake normalcy" as best they can. The self-advocates are definitely taking more control of the conversation, and I, a big fan of activism history and a big believer in the importance of doing the right thing, am gratified. I would never want to "fake normalcy" in a world I believe needs to change.
Fun fact I just learned: Bram Cohen, the creator of BitTorrent, is autistic.
edited 25th Nov '15 1:37:50 PM by BonsaiForest
The book is now talking about the Autistic Self Advocacy Network, and its early successes.
What, don't employers want disabled people to participate in the economy? Oh wait, they're thinking only short-term and about themselves, not the bigger picture. But holy crap, that is some good organizing on the part of autistics. People who are often defined in part by an inability to work in a group, ironically.
Bolding the part that sticks out most to me. I've heard many stories of autistics being told "You're not autistic" because they've learned how better to fake normalcy. And how much not being recognized as autistic has harmed them, in cases where they really needed the help that comes with a diagnosis. It took autistic self-advocates to recognize and point out the problem, working with the APA to make sure the "official" definition of autism recognized that coping mechanisms do not mean that the person is "cured" or that the diagnosis isn't appropriate.
Page 463 of 534. 66% through the book according to my Kindle app. The math doesn't add up, so it makes me wonder, if there a massive addendum or a massive bibliography at the end? Supposedly this book is "meticulously researched", according to one review, and I certainly believe it from the sheer depth of information and variety of places that information comes from. How many research papers and case studies did Silberman have to read?! How did he find case studies of people who weren't diagnosed with autism, but who showed autism-like symptoms decades before autism was officially defined? He must have had to read tons and tons of case records one at a time and look for patterns that suggested autism. He had to have done that in order to be able to point out that autism was discovered in some form or another multiple times and given different names by different psychologists in different countries.
The sheer amount of research that must have gone into making this book is amazing. I can see where those 8 years paid off. And I'm still not done; the book is done with its distant history lesson and is approaching the present situation of autism.
The Wanderer
How much does that book cost, I've been thinking of trying to get my hands on it myself.
Eating a Vanilluxe will give you frostbite.
NeuroTribes is around $16 for all editions: Kindle, paperback and hardcover.
It's getting mostly great reviews. The negative ones tend to be saying the same things: "trivializes autism", "glosses over those with severe autism" (it does describe examples of people with severe autism in great detail, but it's true that it mostly focuses on the mild end), "doesn't emphasize what it's like to be a loved one of someone with severe autism".
Oh, and naturally the anti-vaxxers hate it, claiming the book "revises history" to claim there is no epidemic of autism or explosion of it, but rather that the condition has always been around. Just buried in its severe form (locked in institutions, etc.), and ignored/unrecognized/misdiagnosed in its mild form. He goes into a lot of detail as to why.
The book's focus is more on autistics like us. I understand that criticism, and it's a totally valid one. I do, however, think it's great that the book gives more of a voice to the Aspies with their "invisible disability" that affects them in non-obvious ways, and really tells our story. But the criticism of it not focusing nearly enough on those with the severe form of autism is valid.
I'll review the book when I'm finished reading it.
edited 30th Nov '15 5:11:40 AM by BonsaiForest
Okay, now our author gets a little more blunt and straight to the point.
Here's the very beginning of chapter 12:
Eight decades after Gottfried’s grandmother brought him to the door of Asperger’s clinic seeking to understand his behavior, many aspects of this question are still open. But there are a few points on which clinicians, parents, and neurodiversity advocates agree.
Most researchers now believe that autism is not a single unified entity but a cluster of underlying conditions. These conditions produce a distinctive constellation of behavior and needs that manifests in different ways at various stages of an individual’s development. Adequately addressing these needs requires a lifetime of support from parents, educators, and the community, as Asperger predicted back in 1938. He was equally prescient in insisting that the traits of autism are “not at all rare.” In fact, given current estimates of prevalence, autistic people constitute one of the largest minorities in the world. There are roughly as many people on the spectrum in America as there are Jews.
A thorough review of history also vindicates Asperger’s notion that autistic people have always been part of the human community, though they have often been relegated to the margins of society. For most of the twentieth century, they were hidden behind a welter of competing labels— Sukhareva’s “schizoid personality disorder,” Despert and Bender’s “childhood schizophrenia,” Robinson and Vitale’s “children with circumscribed interests,” Grandin’s initial diagnosis of “minimal brain damage,” and many other labels not mentioned in this book, such as “multiplex personality disorder,” which have fallen out of use.
I think this mostly speaks for itself. I want to add though that a recurring theme throughout the book is the idea that Hans Asperger was very right and really knew what he was doing when he recognized autism for what it was long before the rest of the world started to catch up. Here, he makes that theme quite explicit. A recurring theme has been about how tragic it is that Asperger's discoveries went buried for so long, as we see a great many examples of autistics who fit Asperger's definition of the condition being misunderstood, mistreated, and mislabeled. As we see conspiracy theorists like the anti-vaxxers pop up freaked out by this sudden "epidemic" they see. As the idea that autistics often need support throughout their lives goes unrecognized, as people think that autism exists only in children for some reason. Etc. Asperger was totally right. Only 8 decades later are people starting to realize that.
Okay, I'll throw in another thing about Hans Asperger - if there's two things he was wrong about, one is that he hadn't encountered Kanner's style of autism (very severe autism) and thus his definition of autism, while it included people who were unable to speak, did not include people as severe as Leo Kanner's patients. The other is that Asperger didn't seem to recognize that autism wasn't one condition, but multiple conditions. He did, however, recognize that it appeared to be genetic, and he also admitted that while he was unable to find autism in females, he said that he saw traits of it in some of them - particularly mothers of some of his patients.
Wow. Can you imagine one day candidates for public office competing to sway the "autistic vote"?
![[up]](https://static.tvtropes.org/pmwiki/pub/smiles/arrow_up.png "[up]"){kind=icon}
Yay, fewer Trumps and Cruzes?
I've seen autistics whose political beliefs are all over the grid. If autistics were to be targeted by politicians, the issues wouldn't necessarily be the left/right ones that we normally think of.
The Autistic Self Advocacy Network was already involved in politics - reversing a law that allows disabled people to be paid wayyy below minimum wage (including cents per hour - no exaggeration). So the idea of "autistic politics" isn't farfetched. Question is when politicians realize we exist, we vote, and they can earn our vote. And what exactly the issues will be.
A nice butterfly
Yay, fewer Trumps and Cruzes?The job of the average politican is to not understand things. If anything, they would be ever more insane to desperately try to cate to a diverse, misunderstood, and variably clinical group.
Trump would be all like "HUGS WILL BE OUTLAWED AND WHOEVER IS MEAN TO YOU GOES TO JAIL." and everyone is like "yay?"
edited 1st Dec '15 6:33:58 AM by Aszur
It has always been the prerogative of children and half-wits to point out that the emperor has no clothes
The Autistic Self Advocacy Network has already been involved with politics to try to deal with a small handful of issues. Like disabled employees (regardless of disability type) legally being paid below minimum wage. They teamed up with other organizations to fight against that, as quoted above. That's an example that affects autistics in general, plus other groups.
As far as other issues that affect autistics in general, access to education and employment could be ones that politics may be expected to handle, along with access to needed psychological services (which may be more of a parents' issue, but could be one for autistic adults). I've already seen politicians trying to appeal to parents of autistics. Trump claimed vaccines caused autism, which is something some parents (not autistics necessarily) wanted to hear. I'd seen articles about states passing or proposing laws regarding access to educational services for autistic kids and even psychological or employment-related services for autistic adults. These are not major national issues that everyone talks about, but they do affect autistics, and they involve politics.
Of course, ideas on how to solve these problems may widely vary. Some autistics may prefer a "market" solution to the job problem, which is what organizations like Specialisterne are trying to do. Others may prefer a government solution, similar to the laws passed in some countries that a certain percentage of a workforce must be disabled. But regardless of the solution, they're aimed at solving the same problem affecting the same people.
In short, while there won't be a unified "autistic voting bloc", there really aren't unified voting blocs of other groups of people either due to diverse political views. But there are issues that affect autistics. If we become more vocal, politicians may start to wish to cater to us a bit more. Just ask the Autistic Self Advocacy Network - they already had some success in that area!
edited 1st Dec '15 7:42:42 AM by BonsaiForest
Well, I just finished NeuroTribes, which I've also created a works page for after learning that you're allowed to create works pages for non-fiction.
My prediction was right: it does have a mega-long bibliography. 37 pages of bibliography, which is in smaller print than the rest of the book (which probably explains why the completion percent indicator on my Kindle app went up way faster when I reached this part - the percent is based not on pages, but words). I can see where the massive amount of research Silberman did comes from. And that's not including the huge number of people he interviewed or even hung out with, and the different events he attended. Interestingly, he even says that if you want a complete bibliography (what, this isn't complete enough?!), you can visit his website http://stevesilberman.com/ for the rest.
Anyway, I plan to review the book later once I've gathered my thoughts and figured out what I want to say. There are some legit criticisms of it, but this is probably the best damn book about autism out there at the moment.
edited 1st Dec '15 10:14:21 AM by BonsaiForest
NeuroTribes isn't the be-all end-all book about autism. Such a book, if it existed, would probably be double the length of this one - and this one is 534 pages, including a 37 page bibliography that actually tells you to visit the author's website for more details. Steve Silberman did 8 years of research on autism, and it shows. And yet, this book still doesn't "have it all", probably because there's a hell of a lot to talk about regarding the autism spectrum.
NeuroTribes is mostly a history lesson, though it also does an excellent job of explaining what autism is through its use of history and numerous examples. And it's also an activist tome as well, to an extent.
Peppered all throughout the book from the first chapter to the epilogue, are loads of descriptions of autistics all over the spectrum. And they are mega diverse. They range from those who were diagnosed only when they were very old, to those whose autism was obvious when they were infants. From mega geniuses in one supremely limited area of skill, to people who have broad skills but serious social deficits, to people who can "fake it" quite easily. Their life trajectories are often sad, but sometimes successful. One man wasn't diagnosed until after stumbling his way through life, unable to keep jobs, and realizing that people didn't like him despite his massive attempts to be polite. Some descriptions of people who were never diagnosed with autism, but who very heavily display characteristics of it, are given as well, with the disclaimer that they weren't actually diagnosed.
Leo Kanner and Hans Asperger, the two men credited with simultaneously discovering different forms of autism in their own respective countries (the US and Austria), not only get their own chapters, but are mentioned many times later on. One recurring theme is how Asperger was right, and Kanner was wrong. When later autism researchers discovered that autistics frequently had what Asperger called "autistic intelligence", or that autism occurred in a wide variety of forms, or that autistics grew up and stayed autistic, the fact that Asperger previously discovered that same thing back in the 1930s (before his 1940s presentation on autism) would often be brought up. When the official DSM definition of autism was rewritten to include the whole spectrum, the book said that Kanner's grasp on the definition of autism was now totally broken. And Kanner did try to keep that grasp for a long time, too, and fought against changes, only occasionally relenting on some issues.
The book's main history "lessons" are on the fights over the definition of autism, how parents fought back against parent-blaming, how the public began to understand autism better over time (Rain Man and its influence gets its own chapter!), where the vaccine controversy came from, how autistics have been mistreated by attempts to cure them (think electroshock therapy and all kinds of abuse), how autistics started to take control of their own destinies and demand input into how they are defined and treated, and finally, how autistics have apparently played a big role throughout history in our scientific and technological discoveries. Not in that order.
That last one is a big one, and is part of the book's activist nature. Silberman gives very long, in-depth looks into the lives of Henry Cavendish and Paul Dirac. Cavendish showed little interest in social rituals, and little interest in pretty women, despite one of his best friends being a woman who shared his interest in chemistry. He would eat only one meal: leg of mutton. He was utterly obsessed with learning as much as he could about his singular interest: science, in all its forms. His parents noticed his eccentricities at a young age, and, being rich, were able to give him everything he needed to be happy and indulge his obsession. And Cavendish showed no interest in being famous or hoarding his discoveries for himself, but instead actively allowed people to share his knowledge. Oh yeah, and if you wanted to talk with him, looking him in the eye was a total no-no.
Silberman points out how these are common autism traits, but is careful to say that this isn't proof in and of itself that Cavendish was autistic, though he shows so many traits it's uncanny. He would use this degree of caution when "retro-diagnosing" other possible autistics, as he looks through the history of the sciences and of sci-fi. Some of the people he talks about were later diagnosed autistic as adults, and others never got the chance. He makes an argument that autism is responsible to some degree for much of our science today. He even quotes some prominent autism researchers, including one who said, "For success in science and the arts, a dash of autism is essential."
Another major point is the growing awareness among autistics that they're somehow "different", and their demand to be accepted, or to find a place where they would be. This took many forms, such as a sci-fi fan who attempted (unsuccessfully) to create a community for sci-fi fans to live together separate from the rest of society, to an outing called Autreat, run entirely by autistics, with its own set of rules to follow (e.g. show appreciation by flapping your hands, not clapping them! And wear a color-coded badge to indicate how open you are to social interaction). The color-coded badge idea has caught on in some other venues as well.
The main activist point of the book, really, is the idea that autism is, well, to quote Hans Asperger, common in children and adults, not at all rare, a combination of skill and disability that are directly connected, all around you if you know what to look for, runs in families to a degree, is not necessarily a bad thing, and could lead to success in life if given reasonable accommodation and understanding. Those were Asperger's own beliefs back in the 1930s. He did, however, say that in most cases, the disability of autism overshadowed the skills of autism.
This point is driven home again and again in various ways. Through the profiles of intelligent autistics who found success in the sciences. Through the sad stories of autistics who were misunderstood and abused, their behaviors misinterpreted, and themselves not given any sort of understanding or accommodation. Through the many stories of autistics all over the spectrum, their areas of disability and areas of skill described in detail. Through stories of autistics who were accommodated, and ended up successful and happy in life as a result. Through the descriptions of the family members of autistics, who themselves have mild autism traits.
While autistics disagree on many things, such as to what degree they should fake being normal, what degree society should try to accommodate them versus them just sucking it up and accepting that they're the minority, the best ways to get autistics to be employed and stay employed, whether they should embrace their autism or hide from it, admit to having it or disguise it, etc., the book seems to have an opinion. It seems to take the side of the autistic self-advocates. And, I'll be honest, my side as well.
I've argued that autistics shouldn't have to fake normalcy in order to be accepted, especially since many of us can't, and the attempts to do so often break down. I've argued that society should learn to accept and understand us, since we're already trying our damndest to accept and understand them, and fit in - and not all of us can. I've argued that demanding that we do all the work is unrealistic, and it's easier to make society more accepting than it is to change the many individual autistics to fit in. Hell, the book makes that last point more explicit, as it outright says at one point that psychologists believed it was easier to "fix" autistics through therapies that inevitably failed, than it was to change society to understand them.
Well, this book may not wear its opinions on its sleeve, but it does contain them, reinforced again and again. Its stories of autistics receiving abusive therapy to force them to act normal, its stories of autistics who burned out on faking normalcy and ended up acting overtly autistic sooner or later, and its happy stories of autistics who were accommodated and ended up personally successful in life, all say what I've been saying. And the author sometimes outright says what I've been saying. This book is an activist tome, and it uses its history lessons to bolster its message.
With that said, there are naturally criticisms of NeuroTribes. The first is from the anti-vaxxers, who we all agree can be dismissed out of hand. They claim the book tries to whitewash the autism epidemic by going out of its way to claim that autism isn't an epidemic, even going into explicit detail about how people began to think that autism was rapidly on the rise once its definition changed to be more broad, and even having a chapter on the vaccine controversy. The anti-vaxxers see this as an attempt to bury their concerns. To which I say, shut up already.
The other criticisms are more legit. In fact, the biggest legitimate criticism that I see is the idea that autism itself is being presented in its "happy form", and that the struggles of the severely autistic are being brushed over. The book does talk about severe autistics and provides many profiles of them and their struggles, actually, but it's true that its primary focus is on the "Aspies". Temple Grandin's severe childhood autism, and how she blossomed into the genius she is today, is mentioned. Severe autistics who grew up to remain disabled and in need of community care are also talked about. The book doesn't ignore their existence, and the problems they have. But it's true that this form of autism is not the primary focus of the book, and there are wayyy more examples given of "Aspies" than of autistics who are closer to Leo Kanner's definition. The book even points out how one of Kanner's patients grew up to be a talented painter who is accepted by his community for his eccentricities. But it could be argued that even doing that is presenting the idea that severe autism eventually has a happy ending, which isn't necessarily true; I've even seen a severe autistic man in his 50s or 60s working at my local Whole Foods, and from what I saw of him, I wouldn't call his adult outcome a happy ending.
People will likely continue to argue about whether autism is good, bad, a mixture of the two, or if it depends heavily on the form it takes. But I'm hoping if nothing else, that this book does a few things: clear up misconceptions about what autism is overall, and get people to agree with me that autism should be accepted, understood, and accommodated. That we've already tried to choose to change, and we can't; we're wired this way, so they need to learn to accept us, and both us and society will benefit from this increased understanding. And if nothing else, I have a big ally in the form of this former Wired contributor, and his 534-page tome. That's 534 pages of history that bolsters what are essentially my arguments, and the arguments of many autistic self-advocates. And in a time when the calls for autistic acceptance rather than mere awareness are growing and growing, I think my "side" is gradually winning.
And there's my review. (I may edit this post later to clean it up a bit, but I wanted to get my thoughts out now.)
edited 6th Dec '15 8:38:48 PM by BonsaiForest
Thank you for your very detailed review. It's very helpful and specific.
You're welcome. I tried to cover all the important issues. I definitely could feel the book agreeing with my views, and its history lesson really bolstered them.
And yet, knowing the story behind how it got made makes it feel very honest. By that I mean, Silberman set out originally to understand autism and learn as much as he could. To find out just why it appeared to be an epidemic in Silicon Valley, and appeared so frequently in accomplished, math and tech-oriented families. As he did his 8 years of research, he came to the conclusion on his own that autism needed to be understood, accepted, and accommodated, rather than being treated as a terrible thing to be eliminated.
These were his own independent conclusions; that they line up with my beliefs is simply awesome. After all, this is a man who interviewed tons of people, read through tons of case histories (including many case histories of people not diagnosed as autistic, in order to find the ones who showed autism-like symptoms), hung out with tons of people, visited people ranging from autistics themselves to their family members, and the autism researchers, visited autistic venues, and researched the life stories of many people involved in tech and science. It's one thing for an autistic self-advocate to say "The world needs to change to accept and understand us!" It's another thing entirely for a non-autistic to spend 8 years of research simply trying to learn as much about autism as he possibly can, unearth buried history in the process, and come to the same conclusion as a result of all that research. The fact that this happened, I think, truly strengthens the case of autistic self-advocates.
So, you told me before you were curious what I'd get out of this book. The answer is: validation for my beliefs. In a massive way.
I plan to buy copies for my family members. I hope other people on this thread decide to check it out as well.
edited 7th Dec '15 8:44:44 PM by BonsaiForest
I Can't Fake It Until I Make It - I'm Autistic
. Another op-ed basically about the importance of having a diagnosis and having other people understand you, when you lack the skills to convincingly pass as 100% or even 90% normal.
This author acknowledges that labels can be divisive. That there are autistics who just want to get through life without being labeled as different, and that's okay. But in other cases, there are autistics who want or maybe even need that label and the understanding that comes with it.
Mainly because of this:
So while there are definitely autistics who find a label offensive and don't want others to know they're autistic, I think it's important to understand both that side (hell, most of my life I didn't want anyone to know, so I was on that side myself), and the other side as well.
edited 18th Nov '15 11:29:34 AM by BonsaiForest