Everything You Think You Know About Autism Is Wrong
Ido’s book begins by comprehensively documenting the painful boredom that came with spending every single day of his life, starting at three, doing repetitive drills aimed at teaching him to identify simple objects, put names to emotions, and know the alphabet. Because he was non-verbal, Ido was unable to explain that he had already taught himself to read, that he could do basic math, and that he perfectly understood, although he couldn’t express, a full range of emotions. Nor could Ido explain that, in addition to understanding everything around him, he lived in a physical and emotional environment much richer than that which non-autistic people experience. Instead, he was stuck doing, not just toddler drills, but boring toddler drills, eight hours a day, seven days a week, three hundred and sixty-five days a year:
With ever-increasing despair, Ido writes about his realization that institutional myopia condemned him to a lifetime of monotonous drills, unfulfilled intellectual dreams, and intense loneliness. The early part of Ido’s book makes for painful reading, but it is necessary to understand (a) the wonder of what happened when Ido was able to break out of his silent prison and (b) the incredible gift this book is to those who are related to or care for such a person.
One of the ways Ido tried to deal with his almost untenable existence was targeted anger — against the drills and against his parents. Ido’s mother, Tracy Kedar, kept hearing from the experts that Ido’s hostile behavior was just a random outgrowth of a damaged brain. The experts, however, could not drown out her gut instinct that Ido’s rebellious acts were powered by a focused, logical intelligence, rather than mindless acting-out. Once Tracy became convinced that Ido had a fully functioning brain locked into a recalcitrant body, she and her husband sought out someone who could break through Ido’s frustrating physical and verbal barriers. They found that person in Soma Mukhopadhyay, who had taught her own autistic son how to communicate and who believed that she could do the same for Ido.
I worked with an autistic man, “Joe,” who was about 30 to 35 years old when I knew him. Most of our co-workers were afraid of Joe, or didn’t give him much of a chance, but he and I connected somehow. Like Ido, Joe also did not exhibit facial emotions, but he was obviously a very sensitive and intelligent person. As I got to know Joe, he confided in me that he wanted a girlfriend very much, and that he had never had one before. Joe would attend mixed-sex social events for autistic people, so I encouraged him to try to get to know some of the females at those events, but there was a problem: Joe only wanted to have a girlfriend whose name was “Stephanie,” and who would enjoy bossa nova music. It was heartbreaking seeing his loneliness, and the limits he felt he had to place on possible females to date.
Joe was able to contribute a lot to our workplace. He usually was very punctual, competent and conscientious in his work. But we had a boss who would be considered “normal” in the world, but who was a very unpleasant, troubled woman, and she developed a petty grudge against Joe and fired him for a trivial reason.
Thank you for this article. It is very moving and fascinating. And regarding “experts,” I often think of what the astronaut Wally Schirra said about the wacky psychiatric interviews that he and his comrades were subjected to. He said, “We were well patients being treated by sick doctors.”
The boss was just a human. You, friend, are a superior human.
Well, thanks bvw, but I’ve got my share of faults! And I wish I had the patience that “Joe” had for some things.
Spread across 8 pages?
Is PJ Media so desperate for ad revenue they’ll pull those stupid stunts?
Consider it an ad for life, eh? Perhaps you need to get one.
Single-page view is available for those who prefer it. Only about half of readers do. It’s a long story with many videos after all.
With a website that kindly provides a single-page view option, it just slays me how some people cannot resist the urge to openly complain about multi-paged articles in here. Quitcherbitchin’.
The content for this site is free, so yes they do take some extra inconvenient measures to get some extra revenue. But remember the web site is FREE so quit complaining.
Sorry! Comment was meant for Mr. Crawford not bobcat.
I have a laptop, and the little pages fit perfectly on the screen. This is a nice convenience for me. When I read this website from my monitor, I use single-page format.
Next time you’re feeling frustrated with the equipment you’re using, you can phrase it as a polite question, and people will help you.
Thank you, Bookworm, for this article! You’ve pointed us toward a most promising clue.
And thank you all for reading this article. Ido’s story may not be the story of all non-verbal autistic people, but he is definitely not in a minority of one. The combination of his intelligence, his parents’ unswerving love and faith, and his teacher’s skill and insights, means that he can give voice to so many other people who have not yet been able to communicate.
I don’t usually ask people to share a post, because I assume that, if they think my post is worthy, they will send it along without my nagging, and if they don’t think it’s worthy . . . well, that’s my problem. This post, though, strikes me as being more important than my meager writing skills can convey. So if you know someone with autism, or someone who has an autistic person in his/her life, please consider passing this book review on to them.
i have a foster niece on the autism spectrum. i emailed the article to her foster parents, ordered the book for myself and got the local library to order the book (my offer to donate was declined), all within an hour or two of reading this article. i took a quick look at Ido’s blog, where he surprised me with the observation that autistics are writing books now because this is the first generation that is being taught to type. this struck me as on par with temple grandin’s squeeze machine, an observation that may have equally far reaching effects.
Thank you, jw, for enthusiastically buying and promoting Ido’s book. Speaking of thank yous, I got an awfully nice one yesterday from Ido when I spoke to him and his mom yesterday about the review. I also learned, which I didn’t know before because my server blocks that information, that Ido has two videos on his blog, both of which show him using an iPad to communicate. Because he does this typing entirely unaided, those videos should put to rest any suspicions that Ido is a mere puppet, with someone else providing the thinking and writing.
And thanks to all of you for your kind words about the review. All credit goes to Ido for writing a book that was such a pleasure to review.
Thank you for writing this. If I also think about the movie “Rainman” I’m considering that the autist’s brain is so full of stuff and ideas that the brain itsself is overwhelmed and can’t deal with it. Maybe the speed is also too fast. I’m thinking of a computer too which can break down when it’s feeded with too much information. Basically I think our systems are too stupid and too conformistic to deal with exceptions. And they are too fixated on mainstream to love them. They need love and appreciation even when they can’t respond. The easiest way for society to deal with them is declare them sick, the cheap way. Merry Christmas to Ido, his family and you!
And btw., thank you to pjmedia for offering a single page version.
Many years ago, “60 Minutes” broadcast a segment about a young woman with autism who’d written a book describing her life. I don’t know the title or the author’s name but much of what she described matches Ito’s description of autism. It was the first time I can recall that anyone with autism had written a book. She described autism as sensory overload. We filter out most of what our senses are detecting without thought but she was unable to. Every sight, every sound, every sensation of her clothes was bombarding her brain continuously. She found that wearing rose colored glasses helped quite a bit with the visual sensory overload. For this segment, “60 Minutes” had to provide her the questions in advance. She wasn’t able to participate in a normal interview but she was verbal.
Books like her’s and Ito’s are very valuable because they offer insight into what is a mystery. Because so many autistics are non-verbal, no one knows there are real people inside, kind of like Dalton Trumbo’s “Johnny Got His Gun.” Books like Ito’s should be required reading by everyone who deals with people with autism, be they medical practitioners, parents, educators or employers. I’ll be buying a copy soon.
I myself, though not autistic, do possess some of the autistic traits Ido reveals in the book — in particular being overwhelmed in crowded social situations, and also having extra-sensitive perception. Often, the two issues are linked. For example, I have real trouble having a chat with anyone at a party, not because I’m hard of hearing nor because I don’t connect with emotions, but rather because my hearing is too sensitive and lacks some kind of social filter that other people seems to effortlessly possess, which allows them to focus on the words coming from the one person they’re speaking with. In my case, I am instead bombarded by a cacophony of sound coming from every single person at the party, and I instantly become overloaded. It’s not that I can’t hear the person I’m trying to have a conversation with, it’s that I can hear them and everyone else as well with equal intensity, and I end up hearing 58 conversations at once, with little ability to sort them out. So I often do a lot of nodding, and saying “Yeah, uh-huh,” as a cover for not really being able to hear (over the din) what’s being said to me. More often than I would like, my fakery does not match what is being said, so I don’t laugh at a joke, or stare blankly ahead with no reply to a question, or whatever. As a result, people in groups often think me odd, though in one-on-one or quiet situations, I don’t have this problem. So I understand at least a little bit where Ido is coming from.
While the book seems to be a great insight into the minds of truly autistic people, your review doesn’t touch on one of the basic controversies about the autism epidemic. And no, I’m not talking about the anti-vaccine mania, I’m talking about suspicions of over-diagnosis.
Ido himself is of course actually autistic, and this comment is in no way a assessment of him of of other truly autistic children. But the “epidemic” of autism erupting at this moment in history may be an illusion. I (and a lot of other folks) are convinced that the rate of true autism hasn’t really risen much at all in recent decades — but rather that the rate of over-diagnosis or false diagnosis has skyrocketed, placing all sorts of kids as being “on the autism spectrum” who in fact aren’t autistic at all.
Several times I have encountered or dealt with kids who were purportedly “mildly autistic,” yet who (when you interacted with or observed them) self-evidently weren’t autistic in the slightest. They have have had in some cases this or that minor personality disorder or intellectual defect, but autism? No.
So why were they (and millions of other kids) diagnosed as being autistic? Often there are interlocking financial and social reasons: Some parents of kids with various kinds of unclassifiable semi-problems want to tap into the extra attention, tutoring and funding their child will receive if he or she is officially medically classified as “disabled.” Other parents in similar situations like the moral relief that comes from a doctor saying “It’s not your fault — your child has a medical condition known as autism-spectrum disorder.” That diagnosis can often come as a big relief, an exculpatory ticket out of self-blame.
(One could see this as the pendulum swinging to the other extreme away from Bruno Betelheim; now, a diagnosis of autism is seen as an automatic innocent verdict for one’s parenting skills, rather than the automatic guilty verdict in Betelheim’s day.) But autism has become somewhat of a catch-all diagnosis for what formerly were conditions that either has no name or were considered too minor to merit medicalization. A child in the old days who might simply be labeled “weird” or “dumb” or “peculiar” or “scary” or any number of social put-downs is these days diagnosed as having some form of autism spectrum disorder, when in fact they don’t really have true autism at all. The children in many of these cases really are, to be blunt, simply weird, dumb or peculiar. But there is no extra funding nor relief from parental guilt when one is the parent of a weird child. That’s why many people seek out and welcome an autism diagnosis — which may explain why there is an apparent “epidemic” of new autism cases in recent years. The same is also true for ADHD. Basically, if a semi-dysfunctional child is brought in for diagnosis, the doctors assess him, and if he’s introverted, he gets the autism label, and if he’s extraverted, he gets the ADHD label. Easy peasy.
What this ends up doing of course is hurting truly autistic children, since so many “phonies” are hopping on the bandwagon that it ends up making the skeptical public dismiss autism as an overly vague category that exists only to as a way to shunt low-performing children into special education classes. Meanwhile, the actually autistic are grouped with the merely dysfunctional, and there is a dilution of resources from those who truly would benefit from them.
I realize this is off-topic from Ido’s story, but I had to put my 2¢ in!
“…the “epidemic” of autism erupting at this moment in history may be an illusion”
I too have wondered about this! It seems to me that there is still an awful lot of nebulousness and dangerous practice within the behavioral “sciences.”
You’re right on the Autism and ADD similarity.
In the early 1990′s, ADD was rare. Over time it became more common as more doctors began diagnosing it, mainly because parents and teachers didn’t like boys being active. The diagnostic criteria were loosened and the ADD rates not only exploded but Super ADD (ADHD) was “discovered.” Suddenly ADD pills were hot business as were quack therapies. This was expensive though and a burden on families, so government started with mandated coverage and free money programs for the pills. Rates again exploded.
Autism was also once quite rare. At one time the rate was between 1/1000 to 1/500. However, as interest in Autism grew, suddenly more people were getting diagnosed. Then the criteria were loosened and lo and behold the rate increased. Treatments and care etc. became an expensive cottage industry. Parents demanded help and government mandated and made with the handouts. For years the rate was 1/125 but now it seems it is down to 1/88, which certainly has nothing to do with looser still criteria and parents using online questionnaires and running panicked to doctors and demanding a cure.
Of course there are also a number of “charities” regarding Autism. I won’t say much about those because, as the saying goes, if you can’t say anything nice, don’t say anything at all. However, it is interesting the big paychecks many of the top people are raking in, and also curious the number who tried to kill their autistic children.
So as they say: follow the money. There’s a LOT of it flying around creating a vested interest in making autism seem more common than it is. Fear sells after all.
Also, it is interesting to note that Asperger’s Syndrome is being removed from the DSM this edition. On the one hand it is being folded into the “Autism Spectrum” while on the other, certain other questionable interests are pushing to make AS not a disorder at all, but a unique culture or even racial group, which will naturally make it entitle to all legal protections, handouts, etc., that any other minority might get. Quite disgusting really but something I expected to happen given that I’ve been watching these people since I got my own Dx for AS in the mid 1990′s. Wish I hadn’t now.
In minutes between Thane… $ Zombie there is more lucid insight than I have seen in many, many hours of discussion that is now ongoing on TV.
I have a 42 year old daughter who has Downs Syndrome. The birth rate for Downs has remained the same over these years, for autism the rate has more than quadrupled. If oxygen starvation is the cause(?) is birth itself more dangerous than it was 40 years ago?
QUESTIONS QUESTIONS.
The birth rate for Downs has remained the same over these years, for autism the rate has more than quadrupled. If oxygen starvation is the cause(?) is birth itself more dangerous than it was 40 years ago?
Perhaps you’re confusing celebral palsy with autism. Celebral palsy can be caused by oxygen starvation at birth. I know of nothing linking autism to problems at delivery.
Zombie, as is so often the case, you’re right. I’m especially suspicious of some of the Aspergers diagnoses, since I know several children who were the victims of appallingly bad parenting that resulted in behavioral disorders. When their parents learned to modify their parenting style (firm boundaries, mostly) the symptoms diagnosed as “Aspergers” almost magically vanished. This doesn’t mean I don’t believe in Aspergers, it’s just that I believe parenting styles can lead to behaviors that mimic the real syndrome.
As for ADD and ADHD, I attribute its dramatic rise to computer games. The boys I know (and, as a parent, I know lots of boys), display all the behavior of drug addicts in connection with the games. When they have the games, they’re pacified and happy, and when they’re away from the games, they start jonesing.
Boys have always been at a disadvantage in school, because the rote learning and mandatory “sitting still” are antithetical to boys’ wiggly, jiggly energy. It’s worse nowadays, because so much of what they read (whether bland history books or feeling-centered novels) bore the heck out of them, making them even less disinterested in focusing on learning, and more desperate to return to their stimulating computer times.
Behavioral issues are only a small part of possible Asperger’s but are not the only thing. Many people with AS are quite well behaved, unless provoked when they might have a meltdown (and unfortunately they are common targets because they generally don’t understand why people are being mean to them and bullies LOVE seeing the pained reaction). This is one of the reasons why Autism diagnoses are going up so much.
Also important are things like sensory sensitivities. That could sensitivity to noise (because the brain seems unable to filter it out meaning noise most people won’t notice dominates their mind). Fabrics, paper or other things could be painful to the touch. Food tastes and textures could be nauseating, and so on.
Lack of empathy and communication skills, however, are over emphasized. Few people with AS actually lack empathy, rather it is expressed differently. Communication skills can be lacking because the facial recognition parts of the brain don’t seem to be working right so they miss out on facial expression and body language. This can often be overcome by learning like a skill but it is more taxing than it is for most people for whom this is a background function. So it is not uncommon for those with AS to want to avoid larger groups and find social interaction tiring. But there are also those on the spectrum who really like big crowds and lots of attention.
You seem to have a better understanding of Autism Spectrum Disorders then even some of the so called experts. I get frustrated reading what so many neurotypical people have to say about us. I have AS in a big way, but I did not figure that out until eight years ago.
I response to an earlier comment of yours:
I had two early examinations (because of learning issues), one while in second grade and one as a freshman in HS. Neither of these two evaluations diagnosed the problem. The evaluators probably did not know anything about AS, and though I have all of the characteristics of ADD, I am not ADHD. I think part of the reason for the increase in the number of cases is that fewer people go undiagnosed. I eventually had a neuropsyc exam, at the request of my boss after a meltdown, a few years ago ( age 50!)
I response to this comment:
I have very little difficulty understand other people or their feelings. It does take more effort for me to decode facial expressions as I need to do in software what normal people have hardware for, but I can still do it (I am much better at decoding body posture). I have great difficulty in communicating my thoughts and feelings to others. I usually have to communicate by drawing diagrams or
You seem to have a better understanding of Autism Spectrum Disorders then even some of the so called experts. I get frustrated reading what so many neurotypical people have to say about us. I have AS in a big way, but I did not figure that out until eight years ago.
I response to an earlier comment of yours:
I had two early examinations (because of learning issues), one while in second grade and one as a freshman in HS. Neither of these two evaluations diagnosed the problem. The evaluators probably did not know anything about AS, and though I have all of the characteristics of ADD, I am not ADHD, so they missed that. I think part of the reason for the increase in the number of cases is that fewer people go undiagnosed. I eventually had a neuropsyc exam, at the request of my boss after a meltdown, a few years ago ( age 50!)
I response to this comment:
I have very little difficulty understand other people or their feelings. It does take more effort for me to decode facial expressions as I need to do in software what normal people have hardware for, but I can still do it (I am much better at decoding body posture). What I have great difficulty with, is in communicating my thoughts and feelings to others. I often have to communicate by drawing diagrams or through my work. It helps that I work in a field that attracts a lot of High Functioning Autists and those like me with AS. That means I am not the only odd one. I also find it much easier to communicate to other people who are on the spectrum.
BTW, It is very embarrassing to have a melt-down at the age of 50, but I should have seen it coming. I was in a very technical meeting with five others, some of who were frankly idiots, in a narrow room were I could only see two at a time. I hate meetings especially were I can not see everyone!
And people have said the same thing about comics, TV, radio shows, pulp magazines, and around the turn of the century, those Stratemeyer Syndicate books (Tom Swift, The Hardy Boys, etc).
As someone who only now, after finding out my father has a classic case of Asperger’s (and it being genetic, was passed on to me, and to our kids), am seeing a little hope that maybe I wasn’t as horrible a parent I thought I was; “maybe only 95% of what when wrong was my fault, you mean???” I find these comments painful. Please, leave me with a little hope that my daughter’s extreme anxiety, reactions to noise, crowds, everything sensory, and on and on is not, once more, all my doing…
I have traits, but not the whole syndrome, I don’t believe (except at times like last night, at a social gathering, over which I am today berating myself for all the things I did wrong, I have to wonder if I am), and one of the traits manifested itself in that I read up obsessively on Asperger’s and ADHD (which they’re now thinking is also on the spectrum) and it all explained SO much. My son was diagnosed with ADHD before we had video games or even a computer, and had been suggested for evalutation for autism (which was dismissed by a very young doctor after just a few questions, back before Asperger’s was even official. I never should have left it there). I liked the way one Aspie put it–it should be looked as “where on the spectrum are you?” rather than you’re either austitic, or not. Maybe some only have some traits show through. But that doesn’t mean they were learned/behavioral things, or someone’s fault.
ADHD shows up when a child is very young, long before he plays computer games. One thing that can indicate ADHD is that kids play computer games very differently than regular kids do — they sort of bounce around them randomly rather than try to do the tasks and beat the levels. They love computer games because they love instant and exciting reactions to things, and computer games provide that. They also love rewards, and something happening when you push a button is a kind of reward. There is quite a lot known about ADHD, you should investigate it before you decide what does or doesn’t cause it based on a few people you have met.
I beg to differ about one small point re: ADHD and ADD. I parented two sons about five years prior to the first Atari systems. There was a small tv in the house and they were very similar boys. The older one was colicky and clingy. The younger one (by two and a half years) was incredible–climbing four foot high chain link fences at 18 months and running away. Identical parents, identical parenting style. I enrolled them in studies at NIH and Johns Hopkins. They were documented like crazy. Videotaped in the studies for 20 years both in the clinic and at home. Conclusions–they both ended up being diagnosed ADHD. The younger one in his twenties is now a chef. The older one is a writer. They both had high IQ’s but the “ratio” was great between IQ and achievement. I taught them to read early but they were lousy in school. No special ed classes helped. But they’re okay now. And to those who are always so quick to point to the mother, I say this: stop beating me up and my dead horse too. We got them to adulthood, yes with a bit of medication and a lot of pushing and they are STILL ADD. They taught themselves to reign in the hyperactivity. Walk a mile in my moccasins…it’s always more complicated than it seems from the outside. Park your judgements at the curb before you come through the door of MY experiences.
When our child was diagnosed as being on the autism spectrum, it was after a long variety of tests by a group of experts. In his case, the diagnosis took a long time because he doesn’t have many of the typical signals. (In fact, most people are still surprised to hear his diagnosis.) But after we got the diagnosis and we started reading accounts from other parents with ASD children, my husband said to me, “Huh. This was pretty much my childhood.”
We’d long suspected he was on the spectrum, but when point after point started lining up, it became really clear that our child was pretty much the same profile, only with the added hand flapping. And most people would never guess that my husband is at all autistic—he’s personable, well-integrated, and incredibly talented. But there’s a side they don’t see. They don’t see how too much sensory information overloads him quite easily (his childhood ADD diagnosis was probably one letter off.) They don’t see how he had to teach himself to read social cues. They don’t see how—even now—some things that neurotypical people take for granted are tasks he had to ingrain in his behaviors. (OTOH, I think the doctors were impressed at how little my son’s ASD diagnosis fazed me. With such a positive example in front of me (because we’d already suspected he was on the spectrum), I had no worries that the dreaded word Autism was equal to Tragedy.)
It’s actually really easy to explain what autism is. Everybody has sensory filters in their brains. These filters allow them to determine what is and is not important. When someone is autistic, these filters are broken to some degree. In mild cases, early training can help them how to determine which cues are important. In severe cases, they’re trying to drink from a firehose. Every individual reacts differently to having too much information, but that’s the basic cause. Imagine going to a party where everybody is shouting at you at once, and trying to make out a phone call when you can’t turn up the volume.
When I read that I wonder whether the number went up because people are flooded by info (and entertainment starting early) since we have the computers, and also whether TV adds to it. I wonder whether the number might have been similar before the syndrome not always manifesting itself in quieter times with more care at home and book-reading.
You might want to read up on Sensory Processing Disorder – it is similar to both autism and ADD, sharing many of the symptoms, which can affect any or all of the senses with seemingly random severity. For example, a child might have an oversensitity to touch, where they can’t stand to have clothing labels touch their skin, combined with oversensitive hearing similar to what you describe, and undersensitivity to taste or smell where they constantly want very sweet or very spicy food to stimulate that sense.
Or undersensitity to touch, where they literally run into walls for the sensation, oversensivity to food such that they will only eat very bland substances, and undersensitity to hearing where they sleep right through alarm clocks blaring. Any sense or combination of senses can be affected to varying degrees, and scientists are still not sure why – they only know that for affected people, the brain’s sensory “filter” is somehow malfunctioning. Many children who have it are misdiagnosed and forced to take unhelpful drugs or undergo therapy which doesn’t treat the underlying condition.
The good news is that it is both treatable if correctly diagnosed early (certain exercises can literally train/rewire the brain to manage the symptoms) and even if not treated, most children with the disorder develop coping mechanisms by the time they are 9 or 10 years old. My oldest son (now 4) has SPD and we have seen amazing progress in his development once he was correctly diagnosed. Sorry for the lengthy comment, but I thought you might be interested in learning more about this condition, and how it is often mistaken for autism or ADD.
Thank you Bookworm, for such an honest, open review of this book! I too always wonder if it isn’t the incidence of autism that is rising, but simply the fact that we now have a name for it, and are better at recognizing it. I have close relatives who also have sensory input issues (that’s how I describe, anyway). Both my son and my mom have difficulty in crowded, noisy situations. This made my son’s third year of preschool a bad one, as there were 19 kids in his class. It was too much for him. I love the way he deals with it though– he withdraws & goes to do something quiet (like a puzzle) by himself. Sometimes certain music is too much for him, and he will ask it to be turned down or off. Light is a big factor in whether he wakes up before 5am or not (I have black out shades on his window).
I think there is SO much we don’t really understand about the conditions comprising the autistic spectrum. Finding ways to connect autistic people with their family and friends is the best way to find ways to assist people with autism in living life to the fullest– a challenge we all have in different ways (believe me, as a fibromite, I understand something about this). Ido has found his way– and we are all better for it. His experience may speak to other families with autistic members– especially about the rages for being treated as less than human.
Wonderful review.
Outstanding article in both content and handling!
Other books to consider are Temple Grandin’s. One is called “Thinking in Pictures”. It is called that because she, like many other autistics, thinks in pictures. They have no inner “voice” or words in their heads. So she thinks in pictures, than translates her picture book into words when she speaks. She also has the hyper-sensitive sensory input common to autistics, and that she has turned into an advantage by becoming an expert in animal behavior. She is so good at it because she thinks like an animal. This is not meant to be an insult!! Animals also “think in pictures” because they have no language. Temple sees the world as they see it, and therefore can instruct the rest of us what is bothering an animal. As she and Ido have shown, many autistics have a lot to contribute to society.
This discussion of “autism” (what a vague, pseudo-scientific word!) reminded me for some reason of this short story by H G Wells:
The Remarkable Case of Davidson’s Eyes
http://www.gutenberg.org/cache/epub/11870/pg11870.html
This article, and the replies, provide far more wisdom to the horror in Connecticut, than our entire elite political strata. But it raises unanswered questions. The press reports are grossly error filled but the killer has been linked to autism, specifically Asperger’s, and exhibited “shy – bright book worm” characteristics in his teen years. My question… What makes (or is it possible that) an autistic victim become a mass killer of babies? One “expert” stated that the killer tendency exhibits itself a year before the murder(s). His mom was shot in the face, multiple times. Does this align with your experience of the disorder?
America is, once again, agonizing over how to stop mass murderers. Can you shed light on the problem?
I have read, in the last three days, of a number of family members who live in terror of another malady, schizophrenia. Their loved one is a known killer to be. Doctors can not help, mental health types do not help; apparently the sole path to control is police, and prison, after the horror. Our prisons are populated by violent, mental cases. Society dumped these people on the streets, with the discovery of powerful meds, and washed our hands of these non solution.
Can we do better than chaining monsters to a dungeon wall? It seems our comprehension of mental diseases has not advanced in centuries. This article helped.
I offer a bit of hope. In my engineering career, I learned, years ago, of the discovery of fMRI. Ignoring the technical complexities, it is a means, “to see the brain function real time”. At a primitive stage of understanding, it is judged the greatest advance in medical history since the discovery of anesthesia. It holds the hope of identifying, then fixing, a miss wired brain.
interesting …but I think bamacare will not allow for MRI treatment.
watching Discovery channel I think the zoo’s will have more access to those machines then humans will.
regards
I suspect that the autism and aspergers diagnoses bandied about in the Connecticut mass murder case are examples of misdiagnosis. Paranoid personality disorder, schizoid personality disorder and outright schizophrenia all have poor social skills as one symptom. These days anytime someone exhibits poor social skills autism is pronounced as the problem. It does a great disservice to those who actually have autism for there to be this degree of lazy thinking about the mental health of young people.
As an example of how quickly mental health ‘professionals’ reach for the autism label consider the case of my brother in law. He began having difficulties in his late 30′s. He sometime seemed out of it, and developed some movement disorders. One doctor actually suggested aspergers. This made no sense to me, as I knew that one did not develop aspergers as an adult, and he had been normal and not socially awkward at all as a younger man. The actual malady? Huntington’s Disease. It’s genetic, there is a test, so there is no question about the true diagnosis at this point.
I think there is too much lazy thinking, and fad diagnoses out there in the mental health ‘profession’.
Although this is not my expertise, I surmise you are correct. And I am astonished that the recent history of these mass murders has not drawn attention to America’s disastrous management of our severe mental health pandemic. The killers repeatedly turn out to be deeply insane, yet the topic was ignored in Obamacare, and is being ignored today. By government policy, monsters walk amongst us. There seems to be universal agreement that we have a severe exposure to lethal loonies, but no political interest in identifying and controlling them before the slaughter. This problem may be tangentially related to Second Amendment issues but the problem, once again, is demonic behavior, not ugly weapons.
The sole issue, related to firearms, is the topic of the authorized level of defensive weapons which can readily be available against an armed nut in the crucial seconds of his attack. The police response will always be too slow to stop the killing. The fortress at Sandy Hook was state of the art and worthless. The kids had practiced worthless defense measures only weeks before.
In each of the slaughters we redundantly prove that only citizen action can effectively combat the demon, either to disarm him, or kill him. Is it possible to stop him before his rampage?
I realize this may be a bit goofy and farfetched, and don’t mean to sound flippant, but I have always wondered if autism has some association or link to the evolution of man. No one knows what causes it or much about it at all, but the person “afflicted” is typically higher functioning than the ordinary person in one or more ways. It is occurring more and more frequently and some individuals are higher functioning to the extreme. Yeah, maybe I have read one too many science fiction books, but who is to say? O.K. I am now ready for your invectives.
Not to be a skeptical scientific stick in the mud..
But I cannot help but notice that the “letter board” is being held, and is moving freely, and always by utter coincidence in the direction of the next letter to be chosen- the holder appears infallibly accurate.
So I googled a bit. I found similar images and videos, but I am unable to find a video or photo of a letter board NOT being held and moved by an assistant.
I recall the “Facilitated Communication” scam, which basically had “Facilitators” guiding the hands of children in Ouji-board fashion.
So pardon my caution, please: Is there evidence of a letter board being used in a manner that would make that kind of “cheating” impossible? That is, with the letter board firmly fixed in place, or better, the assistant not in contact?
I realize that this touches raw emotional nerves- Dare I DOUBT that the child, underneath the sullen and silent exterior, is not a brilliant and soulful communicator? But science is science, ESPECIALLY where our feelings are involved.
Swami,
You can see links to Ido typing independently on an iPad here:
http://www.youtube.com/watch?feature=player_embedded&v=Y7kjORIMVCA
http://www.youtube.com/watch?feature=player_embedded&v=dLAwNsT9HdA
These links are available on the idoinautismland.com blog
Thank you, Sharon.
He’s really much, much slower and less sure without someone moving the letters, isn’t he? One letter at a time, and in between, constantly looking at his assistant. Overall, about the same speed as others I know with his condition, not the swift and eloquent typist at all.
That pretty much confirms my doubts about the”letterboard”.
Swami,
I think you may be missing the point. The fact is that he is communicating independently in a sophisticated way on the keyboard. The cognitive ability is there, which is the most important thing.
Think about it this way by analogy, a kid riding their bicycle for the first time without their training wheels look a lot less comfortable than with the training wheels.
The letterboard was my concern, too, given the horrible history of “facilitated communication.” I wish the book were true, but until Ido types it his own manuscript on a keyboard, I think the sentences are hopeful constructs of the letterboard holders.
You should check out the “Swype” typing app for smartphones and tablets. It would not only be faster but would also remove any of the bias potential that you describe.
http://www.youtube.com/watch?v=JmH0vwLu51c
Autistic kids by their nature just dont look or act right. What you take to be sullen and silent may be very different for the person inside.
My daughter learned to read before she could talk. And because her behaviour is so stylized all of her old teachers just assumed she was memorizing little rote scripts to say if she would speak at all.
Now she she wont shut up. But everything she says is more or less pieces of phrases she has heard that approximate the idea. Earthling as a second language kind of situation.
I played the video and had the exact same thought. He did not look as if he were really pointing to the letters to me. And if he can point to the letters, why doesn’t he have a giant keyboard he can type on, or at the very least that same chart taped to a wall so it doesn’t move? No, sorry, I’m very skeptical. You just can’t rely on a communication method in which the other person does so much of the work. That has done more than disappoint people in the past — in the case of facilitated communication, it ruined lives.
Swami — I vaguely remembered FC but did a search for it. Let me google that for you…
Hmmm. Funny how often Soma Mukhopadhyay comes up in close proximity to FC on the net.
I thought this the most useful of the hits:
http://www.operationautismonline.org/blog/a-review-of-the-soma-rapid-prompt-method/
Bottom line: pseudoscience and quackery.
On his blog Ido has two movies where he clearly does all the typing. Granted, it’s not a whole book, but answers that a sophisticated 16 year old would give (I happen to be the mom of one at present). So are you saying Ido does write those answers, but didn’t write the blog or book? You realize that until he was 11, he was thought of as retarded by the outside world. Even if he just typed those two answers it would be considered an incredible break-through, a true miracle, so why go through the trouble of faking a book?
So, in the author’s opinion, when is it okay to give access to firearms to a person with autism?
When(if)my autistic son demonstrates the capacity to handle firearms safely, I will happily guide him in their proper use. He will then have access to them under my supervision. When he becomes a man, he will be able to access them under his own guidance. Answer your question?
If you have a few minutes, I think you’ll be inspired by the story of one of those people that the post-birth abortionists would do away with.
http://www.youtube.com/watch_popup?v=9xwCG0Ey2Mg
Swami,
I have followed Ido on facebook and his blog for years and have also attended an autism conference where he presented and took Q and A from the audience. There are films of him typing with an iPad that sits on a table. he is never touched or guided. I think there are films of this on his blog at http://www.idoinautismland.com. No one touches him or guides him. I think if you read his book all your questions on this will be answered because he addresses the facilitation issue.
Also, it is important to note that he is very young in these clips. For some reason, this article does not show recent films of him. He is now 16 and looks to be about 10 in these clips so obviously his typing skill should have improved. In his book he writes that he first learned how to use letterboard at around 7 or 8. When I met him he answered questions using an iPad on the table.
By the way, Ido’s point of view is very different from Temple Grandin’s. He argues that they do not have the same neurological condition.
It’s a remarkable story. I’m not sure EVERYTHING I thought I knew about autism is wrong, but this certainly adds to what I think I know.
I’d never imagined a letter-board approach to the problem. Swami does raise an issue, but I’m going to assume his skepticism, while prudent, is not the case here.
The Soma story is interesting, that there ARE behavioral and training (and learning) ways into the syndrome. I’ve seen something like this myself, with friends and relatives with various temporary and permanent impairments. The point being, the human body and mind are amazingly complex, and there is amazing variation, and one can find amazing ways around some handicaps – if you look.
Ido seems a remarkable young man, above and beyond his handicap. My regards to him – if he’s reading this, to you, sir!
SWAMI: Please see Bookworm’s re-reply under Comment #4.
Something else most don’t know about autism. Science has virtually just ‘started’ in the area of autistic research so it will be a very long time in numbers of decades before anybody can speak with any authority of the causation(s) autism.
“Scientists use the term “environmental” to refer to influences other than changes in a gene’s DNA. Autism risk factors, for example, appear to include such influences as parental age at conception, maternal nutrition, infection during pregnancy and prematurity.”
At the present, there seems to be an over reaction by many professionals in the arenas of psychology and psychiatry, diagnosing historical discipline corrected behaviors as autism. Our education systems are experiencing ‘dramatic’ increases in such diagnosis among early education classes — especially in districts with heavy representations of our military personnel.
I’m certainly not trying to downplay autism but it seems that already there are diagnostic abuses occurring that is beginning to significantly inpact the cost of education.
Not just ‘autism’ but ‘aspergers’…
Would Einstein have been considered ‘aspergers’ or ‘attention deficit’ because his mind was running ten million miles ahead of most of his cohorts?
Knowing my own high I.Q. ‘aspergy’ trending and my own violent outbursts and whatnot when I went through hormonal changes, I decided to home-school the only child I decided to have.
She was instantly alert after birth…highly intelligent and there was NO way in Hades I was going to subject her to ‘public school’.
My daughter once admitted to me that she had horrible fantasies about killing me. I laughed and told her I had the same about my own mother. She has become an incredibly productive and wonderful person and mother to three children of her Fiance’s.
My I.Q. was recently re-assessed and my 152 i.q. rose to 220. That’s spooky.
Autism is like being in a coma..fwiw…you’re ‘there’ but you ain’t ‘there’
rr
Ask Ido if he is up for an experiment. He complains about “bossy women”. The first community to be dominated by government supported women on welfare was the black community. Even now, more children of single women are born to black mothers than any other ethnic group.
Hypothesis – This reality led to a backlash by black men, particularly those who literally “sing the blues”. So have him try to dance to a good blues song. This may help his body control. Music has ways….
http://www.youtube.com/watch?v=hguUVMcrv2A
http://www.youtube.com/watch?v=6HC94GVNftw
http://www.youtube.com/watch?v=5USfmpUItcM
At least he won’t feel alone.
CORRECTION: Black teenage birth rate has decreased 48% ending that myth.
I think Autism is something that happens from getting Vaccines containing Mercury when young.
They say Mercury goes right to the Brain and destroys it
Yet they put it in Vaccines given to children
Who then, get Autism
Then they say oh, no it’s not the Mercury that does it
Yet if your light bulb filled with Mercury breaks, they think you should get a Hazmat Team to clean it up
Because of the Mercury in the florescent light bulb
But, putting Mercury in Injections in kids is somehow ok.
just saying
Billy: that proposition is a disgusting lie.
First: a tiny amount of a the organo-mercuric compound thiomersal was used in some vaccines as a preservative. The amount of mercury in a vaccine injection was about 25 micrograms, whereas the amount of mercury vapor in a in CF lightbulb is 3-5 milligrams (120 to 200 times as much).
Second: there is no evidence that the trivial exposure to mercury from a vaccine injection can cause autism. In 1998, British physician Andrew Wakefield published a paper finding a correlation between childhood vaccination with vaccines containing thiomersal and autism. This paper has been exposed as fraudulent. Wakefield’s data was made up. The paper was retracted by the journal which published it. And dozens of other scientists who tried to replicate the paper’s finding could not do so. Wakefield was in the pay of lawyers who were planning damage suits against vaccine manufacturers.
Third: This story caused a panic. As a result, millions of children have been denied vaccination against dangerous chilhood diseases, including measles, mumps, rubella, diphtheria, tetanus, pertussis, polio, and tuberculosis. Tens of thousands of children have contracted these preventable diseases, and hundreds have been seriously injured or died.
Fourth: Due to this panic, childhood vaccines were reformulated without thiomersal. This makes them less safe, because the vaccine culture is not protected against contamination with dangerous bacteria. But that problem was less important than children going unvaccinated, and many parents could not be persuaded that the autism story was false.
Panics spread easily. Stopping them is hard. Even though the autism story has been proved false, and thiomersal has been removed from vaccines, many parents still refuse vaccinations for their children, and some of those children are injured or die.
This panic will continue as long as misinformed people repeat the false claim about vaccines and autism. Anyone who doubts that the story is false, please follow the link above.
Actually, Mike, what they ought to do is take away your access to firearms.
You need a brain, in order to handle them, and I don’t believe you’re in possession of that particular organ.
It’s really sick, by the way, how the MSM, and the blogsphere, has been using the recent shooting to foment hatred for the mentally ill, and autistic. After all, why take care of them? They’ll just overload Obamacare, and keep all those poor, 30-year old college students like Sandy Fluke from getting their free birth control. Just get rid of them all now, and save the trouble and expense! /Sarc.
After the Aurora shooting, there was also a lot of demonization going on, vis-a-vis those awful comic fans, who allegedly love violent movies, and who were the ones REALLY to blame, for the massacre! Yes indeedy, let’s just hate the villain of the week, and never ask just why our elites, and our media, seem so intent on vilifying large segements of the population, or dishing up a new “bad guy” every week.
Betty, what I found, sadly, was that it wasn’t just the left blogosphere demonizing mental illness and autism but also the RIGHT. I was very, very disappointed with my compatriots who did this.
Bookworm, this was an outstanding piece. My youngest son is diagnosed autistic/high-functioning (PDD/NOS, in his case, the least helpful diagnosis!), so I’ll be picking this book up. Temple Grandin’s works were immensely useful in helping us figure out ways to help him, so I’m hoping Ido’s book will be useful as well.
The assumption he was autistic is irresponsable. When in the past have we any occurance of a autistic son murdering his mother in such a violent and sadistic way?
The fact that he shot her numerous times point blank in her face leads one to suspect something more personal in his attack, possibly to silence her.
Perhaps because the current belief that autusm is a spectrtum of diseases, I don’t think understanding autism can be generalized. I lived across the street from an autistic child and could often hear him crying all night. His illness caused many problems for the family, even to the extent that his older sister could not adopt a cat from the Humane Society because of it. The school district provided special classes and mainstreamed many autistic kids. His parents felt strongly about the mainstreaming and insisted not all could or should be mainstreamed. I wish the cause could be found…so many ideas have been publlicized. One clerk in a store filled me in on the “facts” about injections causing it. If this is true, why don’t all kids become autistic? I once saw a program on the learning channel about a family in which all the children had some form of autism. To me, that would indicate a genetic cause. The mother seemed very laid bsck and not too concerned as one child ripped wallpaper off the wall. Maybe she was autistic also.
I think we all, (including mental health professionals) need to be humble. There is so much we do not know and there have been so many changes in diagnoses and theories over the years. We are lucky to have a book like Ido’s.
This is a wothwhile artical that encourages people meeting autistic people to regard them as people, mind to mind. It is beyond Bookworm’s usual caustic political observations, and there is not one homophobic jest in the whole thing.
I’ve been diagnosed with severe brain damage from birth, blue baby syndrome.
I went to neurologists for several years, they taught me to focus my attention and to move normally. My motor center was mostly destroyed. I am now FAR better physically co-ordinated then most normal people and work as a third level IT network engineer. I read at over 700 WPM.
My wife has had a large percentage of her brain destroyed by cancer, she HAD autism like effects as she lost her right temporal lobe. She learned to use software instead of the hardware for this task and functions at 99% in this regard. She is about to finish her PHD carrying a 4.o grade average. People can MAKE their brain do what they want it to. It takes 2 things, will power and the belief it can be done. God left us a control panel in the mind that one simply has to reach inside to find, its there in ALL of us. It allows humans to do super human things with the tools given them. The bulk of people run on automatic, never examining their greater abilities.