Slashdot Mirror
Wired on Autism in the Valley
digaman writes: "The December issue of Wired magazine contains an article of mine on what appears to be an upsurge in autism among the children of programmers and engineers in Silicon Valley: "The Geek Syndrome." A complicated issue, explored in depth. I hear the California Department of Developmental Services is launching a research project to investigate the questions raised in the article."
Premise: "Nick" is acting weird.
Premise: His parents are software engineers.
Conclusion: Nick's behavior is an effect of his parents' occupation.
Let's explore your simple minded interpretations of the article using some of the context from the article.
Well, according to my family, I was a pretty happy and good kid until 2, then "it" started. I was unruly and unmanageable, and just not "ordinary". I was diagnosed as autistic, and supposedly highly intelligent. Most of my problems were behavioural (tantrums, outburts,etc) and later I was "hyperactive". I spent most of late childhood/early adolescence on medication.
;)
Now I am in my late 20's and can honestly say that I am of average or even above-average intelligence, and pretty much fit the description of any of those children. I will admit that pop-culture diagnoses like those in the article are like reading horoscopes alot of the time, but then I see this "social interactions, motor skills, sensory processing, and a tendency toward repetitive behavior" and "Marked impairment in the use of nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction."
It friggin sucks to be like this when others are around. I feel fine when its just me, alone. Then I am "normal". Or maybe it's all another marketable designer disease to capitalise on an information overloaded society. All those wired kids from (wealthy) wired parents ready for the diagnosing. Maybe our species is slowly evolving into specialised groups. We have races that developed along climatological and geographical lines to adapt to the environment, so I have no problem thinking that maybe this is just darwinian environmental pressures in action. There is alot of information out there, and alot of it is highly specialised, requiring a certain mind ( or wetware configuration?)
I don't mean that people like this are superior or anything, although in the short-term it may have an advantage in our economy, but that is only on the scale of a few generations. I am thinking more in terms of ourselves as a species. We have "geeks", "atheletes", "artists" and the ever-numerous "sheeple", which have always been around to an extent, maybe our species is specialising in order to cope with the amount of information neccessary to survive.
How many people can run a triathalon, code up a small mail agent, cook a gourmet dinner, perform simple surgery if the need arose, interpret the latest precedent-setting court case, sculpt a piece of greco-roman inspired art, and read a book to your kids at night? I don't know about you, but I have hard time just getting out of the bed, my stupid body refuses to hear the damn alarm clock sometimes
Anyways, I have shit social skills, avoid the company of others, and am basically a misfit. I am not pulling in the huge IT bucks, so despite my intelligence, I won't get the sexy AND intelligent wife, fast car, and nice clothes (in that order please).
So, how many slashdotters out there are well-adjusted, sociable geeks (Hmm, oxymoron?), and how many of you are/have been diagnosed as being "different" from your fellow homo sapiens?
< raises hand >
Having dealt with _many_ psychologists at the undergraduate level, particularly in the teaching of statisitics and computing, I feel comfortable saying that it is the science (and I use the word loosely) in which the scientific method fails to rear its head most frequently.
Articles like this are exactly the kind of crap that fail to distinguish correlation from causation. That is assuming that there is some empirical evidence to suggest that there is an actual rise, a fact which the article supports with:
[For Rick Rollens, former secretary of the California Senate and cofounder of the MIND Institute, the notion that there is a frightening increase in autism worldwide is no longer in question. "Anyone who says this epidemic is due to better diagnostics," he says, "has his head in the sand."]
rant
Now theres an objective analysis from a double blind researcher NOT. And only last night I saw the South park episode where all the kids are given Ritilin. Alternative therapy - gee well maybe there aint nothin' wrong with most of them so just leave them alone and let them work out via peer groups that you shouldn't wear stupid clothes for a bet. Most of us geeks got a bit of a kicking when we were at school and whilst it is not ideal it is pretty much human behaviour 101 that we attack that which makes us feel insecure and from my experience the most attacking were the most insecure so "get over it"
\rant
"The first thing to do when you find yourself in a hole is stop digging."
If thats true, why do people treat autism like its a disease, when its just genetics.
WTF does that mean? There are many inherited diseases. For example, Thallasemia - the most common monogenic (single gene) disorder in the world. Or sickle cell disease. Or Cyctic fibrosis. Or Duchenne Muscular Dystrophy. Or Prader-Willi Syndrome. Or DiGeorge syndrome. Or Angelmann syndrome. I could go on....
All these are considered "syndromes" or "Diseases", despite the fact thay are at least in part "genetic". In fact, many of the worlds most common diseases (including autism) are the result of a combination of environmental and inherited factors - so called "multifactorial" disorders. Such as diabetes, heart disease, or cancer.
Instead of focusing on labeling people and giving them drugs
Labelling people is actually pretty important step of helping them. For example:
Doctor1: "this man need's help"
Doctor2: "Whats wrong with him?"
Doctor1: "Er, he's got that thing, you know, the doobree, where they are, er, a bit shy. Talk funny, oh c'mon... you must know it!"
Who said we were just giving them drugs? From the article
"In the last 20 years, significant advances have been made in developing methods of behavioral training that help autistic children find ways to communicate. These techniques, however, require prodigious amounts of persistence, time, money, and love. Though more than half a century has passed since Kanner and Asperger first gave a name to autism, there is still no known cause, no miracle drug, and no cure. "
if they end up becoming the next einstiens is it worth it?
Yes. There's no point in being a genius if you are unable to communicate your idea's. Or if you are isolated, unhappy and socially inept. I would much rather be socially included in society, than be a genius outsider.
"Every inteligent person is disabled in some way"
Nope. Everything has a flip side, you could say that while I'm advantaged by being tall because I can reach the hoop with a modest jump, I am also 'disabled' because I have to bend further which might hurt my back in the long term.
In the geek community I regard this as 'I'm Ender' syndrome. I'M good at school, I'M better than my peers, I'M bullied - therefore I have the power to rule the known universe!!!
Just because your a bit smarter than the rest of your class doesn't mean your in the ranks of picasso and hawking (hawking isn't in the ranks of hawking if we're honest). Being good at something is NOT the same as being great. I can paint - I sell the odd painting - they're better than 90% of the crap sold in low rent galleries. But they are pure turd compared to .
Just because you can write a bit of decent code and you shit your pants when a woman asks you the time doesn't mean your autistic - it means you can write a bit of decent code and you have a social anxiety problem. Most are mild, and can be easily rememdied through counselling - mine was.
Theres comfort in identifying with a disabled group. Everyone claims to be 'a bit dyslexic' - very few genuinely are. They just use it as a cover for the occassional mistake - its not my fault - I was born this way - and theres nothing I can do about it.
Dont compare someone with diabeties or cancer to someone with Autism.
If you actually read what I was saying, you would understand that I was comparing the genetic/environmental causes of these disorders, rather than comparing them at a medical/sociological level. Which is quite valid, because there are similarities between the causes.
Someone with a REAL disease which they can die from needs help.
Autism is a "REAL" disease, for fucks sake. Just because a disease is psychological and does not appear to be an immediate threat, it does not mean it isn't a problem.
Take your example of depression. A lot of depressed people commit suicide. Other than bringing to an end all the potential of their future life, it also has consequences for family, friends and colleagues. A lot of depressed people refuse treatment. A lot of idiots think depressed people should "pull their socks up", "knock it off", "stop attracting attention", etc. However, depression is a serious, medical disorder which should be treated by appropriate means - counselling, cognitive psychology, seratonin reuptake inhibitors, etc. Leaving them in a depressed state is not fair. Ever been depressed? It's not enjoyable, I can tell you. Ever had a family member who is depressed? Its not enjoyable, I can tell you. Ever had a work colleague with depression? They are not very productive. Ever seen someone for whom Prozac worked, without side affects? The change is profound and beautiful. You see the person come back to life.
Yes, maybe i am pushing my definition of social normality onto other people. But in certain cases it is hard to argue how not doing so is of benefit to that person. Sure, if somebody is a bit *special*, and is happy, fulfilled, and of no harm to themselves and others, then fine. If they could be helped in some way - help them. I don't see what the problem is here.
You're choice of depression was not a good one. It is a largely misunderstood disease. However, there is a deep philosophical point you were trying to make. At what point does someone need help? Where, on the scale from normality to disease, should we intervene? Should we help people who refuse treatment, even when the refusal is a consequence of this disease? Is the reason for treatment limited to the person involved, or should we take a wider stance, and consider the consequences of disease and subsequent treatment on society?
These are difficult questions. You and I cannot answer them. I am not even sure if society can answer them. I guess this is an example where democracy is an imperfect solution, but it's the best solution we've got. Opinions?
Mike Tyson, I'm sure he could use some anger management classes, but for a boxer, his anger is what made him champion of the world.
Um, maybe if he had taken anger management courses, he wouldn't have ended up in prison, and hurt those around him. This is exactly the point I am trying to make.
Einstein wasn't antisocial. And John von Neumann, Leonardo da Vinci and Richard Feynman didn't seem to have anything wrong with their lives. Some people are just lucky so-and-sos.
-- the most controversial site on the Web
(I DID read the entire article when it first came out)-
Whether it is genetic, or environmental ("odd" socialization that is somehow "learned" by children) it really doesn't matter, the outcome is the same.
What concerns me the most is how "disease theory" operates, and how certain diseases (especially mental disorders) become "in vogue." This goes all the way back to Freud (say what you will)- but as a newly emerging middle class had more "idle time" on their hands, and as newly affluent wives developed widely publicized anxiety disorders, the disorder eventually trickled down to the rest of the population.
-not to mention of diagnosis by practioneers is practically contagious.
I work in the field, and have seen wild diagnostic trends- in the 80s we saw an explosion in the diagnosis of depression and BPD (Borderline Personality Disorder). In the early 90s MPD (multiple personalities) was widely diagnosed (way above the prevalence rates shown by any "hard research"- and now MPD is not even in the diagnostic manual). Then we've seen the diagnosis of everything under the sun for our children- (ADD, ADHD, ODD, it goes on and on... BTW- ODD stands for "Oppositional Defiant Disorder"- these are just KIDS were talking about here! All kids can be ODD.).
For many parents it is ultimately "cool" to have a kid with a diagnosis... it lets them off the hook. It lets educators off the hook. How many of you went to primary school in the 70s and sat in a class of 30+ and were taught by a 60+ year old ex-nun with a two-year teaching certificate who had absolutely NO PROBLEM maintaining discipline in the classroom?
Aspergers IS relatively new as a *widespread* diagnosis- it is in essence a "disease of the week." After the inevitable backlash, we'll be having this discussion about some other "disorder" and Aspergers will be an odd footnote of early 21st Century child psychology.
Those that suggest you "dance like no one is watching" really want to see you make a complete fool of yourself.
And the only reason it's classified as such is because the non-Asperger's people incorrectly consider themselves 'normal'. What we're seeing here is partly resentment of the way technically minded people have moved from being something of a joke to the people who invent and maintain the modern world.
... She explained that it was a spectrum disorder, meaning that it could range anywhere from being mild, to being like Rainman, to even worse. She described the symptoms - repeating words all the time, running away from people, failing to interact/play with peers, repetitious hand movements, etc. etc. We agreed that she seemed to be having a real problem communicating - she reads at a 1st or 2nd grade level and talks like a 2 year old. She is currently being scheduled for the observations necessary to certify her as being autistic.
... Aspies had trouble socializing with people beginning in childhood. Well, I had, but, you know, the people I went to school with were such jerks anyway ... Apsies had poor communication skills with people, often sounding like "little professors" with odd, grating voices. Well, um, they had called me "Brainiac" in school. Aspies had some narrow, almost compulsive interests, which may stay the same, or change - one described his hobby of looking at maps for hours and hours and then spending more hours drawing maps of imaginary countries and cities. I gulped, remembering that I used to do the same thing. Aspies had few friends from childhood on and people thought they were rude and too direct. Well ... I looked at the screen with tears in my eyes, recognizing myself.
There's something to be said for the neurologically typical (NT) having labelled the rest of the people "weird" or "geeky" or "autistic". I myself believed that my problems in life had been caused by people hating intelligent people or people who were academically successful. For 44 years, I could comfort myself with the thought that most people were locking out the more intelligent of us because they were acting on some kind of stupid animal instinct to oppress the "other". It was a convenient thing to think, as I didn't have to confront the other things going on, such as my underachieving compared to my potential, such as my not having more than one or two real friends at any time in my life, such as feeling like a stranger and an alien in the place I grew up in.
In the last 5 weeks or so, I've gotten the shock of my life.
My daughter is almost six and is currently going to a Preprimary Impaired program. At the first parent teacher conference, the school psychologist asked me if I had ever heard of Autism. I said, yeah, and mentioned Rainman
That was one hell of a shock, to realize that my kid might never have a normal life, or become a self supporting adult. (I think she'll adjust to her condition, but I can't be sure.) I immediately started researching this online and at the library. Temple Grandin's book "Thinking in Pictures" was an excellent account by an autistic woman of how she percieves the world and how she has managed to adjust to it successfully. Donna William's "Nobody, Nowhere", "Somebody, Somewhere" and "Like Color to the Blind" are harrowing and deep accounts of how a woman gradually came to terms with her autism and the world around her. The best web resource is the "Oops, Wrong Planet Syndrome" webpage at http://www.isn.net/~jypsy, which has hundreds of links, including webpages written by those with autism or Asperger's Syndrome.
A week ago Sunday, I was at that page and having recalled that the school psychologist had mentioned Asperger's as another possibility as to what was going on with my daughter, so I decided to follow some links and read what the doctors and the patients had to say about it. As I read, interest turned to discomfort, and discomfort slowly turned to shock.
Asperger's Syndrome sufferers (Aspies) were often highly intelligent. Well, I'm highly intelligent, but
I had Asperger's Syndrome.
Somehow, I'd managed to cope with it, enough to be able to hold a good job and have a family and stay sane. I'd even managed to mellow a little and get along a little better with people, although my general instinct is to avoid people whenever possible; if I want to talk about things with people, I can just go give myself a silly name like "Pyramid Termite" and go online to webboard like Slashdot. That's sort of relating. I guess.
Right now, I'm working up the nerve to talk to a psychologist. I wanted to, anyway, so I could understand my daughter's autism and how to deal with it, but now I need to understand my own.
So, alright, Slashdotters, it might be genetic, or pollution caused, or have something to do with the MMR vaccine. Hell, I don't know. I have some special abilities, but there are people who also have them who aren't on the autistic spectrum. If I'm the future of humanity or a member of the Master Race, let me tell you, I don't feel like it. I feel sad and scared and proud of myself and regretful that no one, least of all me, understood what I was going through until now. I can't tell you what it's like to be a high functioning autistic person because I don't know that for myself yet. It's going to take some time, and meanwhile, I've got to keep working at my job and guide my daughter through her problems.
It's said that 1/3 to 1/2 of Aspies go undiagnosed. If there's a problem in your life with alienation, never having any friends, relating poorly to people, etc., take a good look. Like me, you could have Apserger's or autism and not even know it.
You have no idea how unhappy most people with autism related disorders are.
All the things that nearly everyone considers the most important things in life, such as friendship, love, social acceptance, relationships are made incredibly difficult. This is not just the prejudice of society, the attempts at social interaction by people with low emotional intelligence really are incredibly annoying, and often downright hurtful.
Autism related disorders do not make someone more intelligent or more apt at technical skills. It is just that certain technical- or scientific fields are the only way in which some of them can find a place in society. The ones that don't have these skills, often end up as the smelly homeless people you step over in the street.
Neither is autism a prerequisition for success in a technical profession. Believe it or not, most highly intelligent people are also highly social. Looking at students in university, the most successful ones are usually the highly social ones, and *not* the complete and utter spods.
Limited social intelligence and fine motor control can make life a living hell, especially for kids. It is a disability that has a very severe impact on the quality of life. To suggest it is merely a 'perception problem' of society is no different from claiming deafness isn't a disability, but our cultures reliance on sound is.
I've no doubt that some significant percentage of the new cases in California are legitimate. I do wonder, though, if a significant percentage of the remainder, though, are not autistic but are rather by-products of society's modern trend of blaming a child's behavioral or developmental problems on a psychological/mental disorder and doping him/her up on medication as a means of covering up our failures at being and unwillingness to be responsible parents.
Never try to self diagnose...
Ya know... I don't think you should worry about what you had. If anything, you should feel a little proud that you made it ok. In the end, it doesn't matter if it was other people not liking you, or a disease, or a sadistic god sprinkling dust on your little clay statue. You were faced with a problem, you adapted to it, and you won. You might not have known the cause, but you still came out on top. That's about all a pshycologist can tell you.
What is important is your daughter. She's going to have a heck of a time, and she's going to need all the understanding, patience, and love that you can muster. Take all that knowledge and experience that you have from your life, all those memories of how you felt, and what you liked, and what made you feel better, and channel it into being that best father for your her. And making her life as rich and worthwhile as possible, regardless of what her prognosis ends up as.
You can look back at your past and analyse yourself and feel pity, or sadness or whatever. Or you can take this disease that you had/have, and turn it into a heroic trait. Use that understanding and apply it to your daughter, and become a hero for her. Do that and you won't have to worry about the ways that your physiology isn't normal, becuase you will have lept beyond the norm in the one area in which you are handicapped - interacting with another person.
_sig_ is away