But what exactly constitutes "beating" Autism? Is this actually desirable?
I was diagnosed with Asperger's in the mid-90s. I wrote about the experience anonymously for Boing Boing at one point[1].
But the TL;DR is that having lived in both "worlds", the experience of being "cured" was not worth it. The emotional costs were much too high - I just traded ASD for PTSD. I used to be a happy kid with few friends who tinkered with computers. Now I'm a very social guy who will shake your hand, look you in the eye, ask all the right questions to make you feel special. And I'll be miserable the whole time.
> But what exactly constitutes "beating" Autism? Is this actually desirable?
I'd call it the ability to care for oneself independently, generally meaning the ability to hold a job and manage personal affairs. Asperger's and full-blown autism are very different things. This is like comparing a common cold with a life-threatening case of pneumonia.
I worked with autistic people for six years. In the best cases, they weren't able to care for themselves, but they had few enough behavioral problems that they could go on brief 'outings' in the community with staff never more than a few feet away. In the worst cases, they were violent, engaging in serious self-harm, as well as attacking others. I had to take assault response training and use it on a regular basis. They spent little or no time with their families, had no friends, and usually hated the other clients in their group home. It was not a good life, despite the best efforts of the staff.
tl;dr: yes, in my experience, beating autism is highly desirable.
From what I've been able to tell, Asperger's and autism aren't that different at all. The main diagnostic difference is whether someone develops language at the usual age, and apparently that's not necessarily all that indicative of how well they'll do when older.
People generally write about Asperger's and autism as points on a spectrum; towards the autism end of that spectrum, people can be incapable of taking care of themselves on a day-to-day basis, which in my opinion (and I think mullingitover's) is the real issue.
> Asperger's and full-blown autism are very different things. This is like comparing a common cold with a life-threatening case of pneumonia.
They're really not.
> I worked with autistic people for six years. In the best cases, they weren't able to care for themselves, but they had few enough behavioral problems that they could go on brief 'outings' in the community with staff never more than a few feet away. In the worst cases, they were violent, engaging in serious self-harm, as well as attacking others. I had to take assault response training and use it on a regular basis.
I have lived in a number of 'mental healthcare' institutions in the Netherlands for a few years. One of them was (supposedly) specialized in 'autism spectrum disorders'. My experiences do not match what you are describing at all. I'd argue that almost half of the people living there would have been able to care for themselves, had it been necessary - and these were mostly people under 18, so that's a lot. The (rare) case of violence or self-harm derived from other mental issues that weren't in any way related to autism, and frequently a result of their living in the facility.
> They spent little or no time with their families, had no friends, and usually hated the other clients in their group home. It was not a good life, despite the best efforts of the staff.
This doesn't surprise me. By far the biggest harm to these people is done by the staff, who appear to be completely oblivious to how people actually think, and try to fit them into a 'treatment' programme. I have seen multiple people break down completely as a result of their living in said facility, who would not otherwise have significant problems - hell, I've been one of them.
Not having friends doesn't surprise me either. The facility that I've lived in - and, from what I've heard, other facilities as well - essentially put you into social isolation. It's near impossible to maintain social contacts with anybody outside the facility, and staff appears to be so blind for what's actually going on that you have no trustable person to talk to either. Little contact with family doesn't surprise me either; the reason people ended up in those facilities was usually because their parents were unable to understand them. Of course you're not going to have a healthy relationship with them.
For a bit more context, not elaborated on in that blog post; for over a year after I left that particular facility, I've been unable to experience any emotions other than anger and sadness.
These kind of facilities destroy people. They're more often the cause of problems, than they are a solution.
> tl;dr: yes, in my experience, beating autism is highly desirable.
You need to understand that some people simply think or behave differently. As long as it gets them through life in a sufficiently happy manner, there's nothing to "beat" or "fix".
> I have lived in a number of 'mental healthcare' institutions in the Netherlands for a few years. One of them was (supposedly) specialized in 'autism spectrum disorders'. My experiences do not match what you are describing at all.
I am not surprised in the least. If you're able to write then you're in a whole different (much, much more high functioning) class of disability than the people I was working with.
> By far the biggest harm to these people is done by the staff, who appear to be completely oblivious to how people actually think, and try to fit them into a 'treatment' programme.
Also not surprising--the facilities I worked at were very forward-thinking, and I witnessed some unbelievable behavior improvements through targeted autsim therapies, but in the past the state mental hospitals were notoriously abusive. Still, even with the best facilities, you're going to run into problems with staff when wages are less than ten dollars per hour (early 2000s, it's probably closer to 12 an hour now). Most staff at these types of care facilities could instantly double their wages if they got a job delivering pizza.
> I am not surprised in the least. If you're able to write then you're in a whole different (much, much more high functioning) class of disability than the people I was working with.
There are (were?) only two 'autism-specialized' treatment facilities in the Netherlands, and their client base is divided based on geographical location, not 'severity'. I've seen everything from worst to best. I have not had any reason to believe that this is different elsewhere.
I feel you. The weirdest thing about it for me is that I try to hide this even from myself. I'm trying to be normal all day and think I don't even suffer from autism that badly, but every now and again it just cracks.
In a way I'm like everyone else. I care about friends and family; I try to be productive and make useful things; I like learning about new technologies. At the same time I'm also different and people notice it. They don't ask me when a group in class is going out to celebrate the holidays. I'd chicken out of this social happening and probably say no, but what bothers me is that they don't even ask.
Some vocalize that they notice something is off and I might tell them about autism and give them an outline of what it means. If I tell them I often also ask if they can put it into concrete examples of what I do differently. They never can.
But I'll carry on. I'm normal enough, I can pull through life and make a living. Hope to meet a SO some day who understands me. That probably means she must have her limitations too and I'll have to live with that, but in return she might understand mine and that's worth all the gold in the world.
Hope this isn't too weird a post for Hacker News, I needed to write this after reading about a fellow person with autism. Keep hacking.
>Some vocalize that they notice something is off and I might tell them about autism and give them an outline of what it means. If I tell them I often also ask if they can put it into concrete examples of what I do differently. They never can.
This really hits home for me.
I've never been diagnosed as autistic or Asperger's, but I'm very socially awkward, anxious, and have always been considered quite "weird" by peers and strangers. I also believe I share many symptoms with those who are on the autistic spectrum; if I ever saw a doctor I suspect I might get diagnosed with something.
I've also just about never been invited to any social gathering or to "hang out", though even if I was asked I'd almost definitely make an excuse and say I couldn't.
Any time I ask someone about exactly what it is that I do differently, I can never get a precise answer.
Over time I've come to realize what some of those differences are, and every day I try to consciously change or remove them, but it can be difficult. Sometimes I'll forget, sometimes it'll be very instinctive, etc. It really does feel like putting on a mask of normalcy a lot of the time though.
If it makes you feel any better, there are a lot of people like you and me out there.
Ditto. I'm well past the age where a diagnosis can officially be made, but I know several people with autism or Aspergers at varying degrees of functionality, and they will tell me that they think I've got Aspergers.
I went through a long period where I kind of mostly knew how to fake normal, and be sociable, and hate it, but I've mostly gotten past that. I attribute it to getting really lucky with friends- high school had a lot* of people who were just as weird as me in different ways, so we could all tolerate each others weirdness together and not feel awkward about figuring out social skills. And then I got even luckier in college to get noticed by people who actually did invite me to go hang out and go to parties, generally show that they cared, even if I didn't end up going half the time.
Things like making eye contact, figuring out how small talk works, conversational turn-taking, reading other people's facial expressions / other body language steel feel like consciously applied skills that do not come naturally, but with a few years of practice with that kind of background, it is no longer actively miserable to do.
The biggest influence in all that, though, was my wife. I really lucked out on finding a nice understanding, mutually introverted young lady who decided she wanted to marry me and let me skip trying to figure out how dating works! She's a big help with interfacing with the Real World.
*Uh, by the standards of my typical preferred introverted circle-of-friends size. Like, 5.
When I was diagnosed with ADD as an adult, the doctor said, people with ADD are just like everyone else, only moreso.
A lot of what I feel, and the comments I see from those diagnosed on the autism spectrum, sounds like good old introversion. An introvert in a social setting is very much wearing a mask, trying to hold on long enough before all willpower is drained. I guess an extrovert probably feels the same about reading Large Scale C++ Software Design on a Saturday night.
Across the spectrum of neurodiversity (incl. ADD & autism), a large gap exists in language for:
- common emotional experiences, good and bad
- coping patterns for profiling & impedance matching other humans
- dysfunctional behavior patterns that should be avoided
Sadly, because most of these behaviors have been observed from the viewpoint of medical pathology, many "dictionaries" have a negative slant.
E.g. ADD could be a "deficit" of attention, or it could be a "surplus" of attention, e.g. someone switches into a context for a few seconds, then switches out because they are already finished processing it. It's like the duty cycle of an electronic component, forcing the duration to be longer would lead to sensor overload.
Someone could be labelled introvert because they can only spend a short amount of time with other people. But perhaps they have low psychic barriers for the energy of other people and are being bombarded with emotions. Is that anti-social or super-social? What if there was standardized terminology for configuring emotional firewalls?
The language of disability is often defined by majorities. One ADD person with four non-ADD people may be viewed as "rude" for interrupting before sentences are complete, whereas one non-ADD person among four ADD people may be unable to keep up with five concurrent and tangential conversations where completed sentences are entirely optional.
> The language of disability is often defined by majorities. One ADD person with four non-ADD people may be viewed as "rude" for interrupting before sentences are complete, whereas one non-ADD person among four ADD people may be unable to keep up with five concurrent and tangential conversations where completed sentences are entirely optional.
Thank you for making that comparison. I still struggle to hold back from finishing others' sentences, even though it seems like I finish them "correctly" more often than not.
I'm also reminded of how how middle eastern peace talks are complicated, in part, by the major differences in conversational styles. One side expects to be interrupted, while the other finds it incredibly rude.
>E.g. ADD could be a "deficit" of attention, or it could be a "surplus" of attention
This is very true. Of the six types of ADD, one is "over focus". It is ironic that someone with attention deficit disorder can focus intensely on the same thing for 12 hours. I'm not an expert on the biology of it, but it seems like a problem caused by improper regulation of some chemicals in the brain, the same way improper regulation of insulin release can cause all kinds of problems.
Why the false dichtomy? I consider myself a very social person, and I can still treasure a night at home with a cpu reference manual. I see no reason to value one over the other as they are not on the same thing.
The idea that introverts are somehow better programmers is a bit like seeing someone with glasses and expecting them to be bookworms. I understand it is a convenient social role up for grabs, but not everyone who think they are good programmers really are.
A lot of the hackers I know are very easy going and social people. We come in all shapes and sizes.
Introvert-extrovert is a spectrum, not a false dichotomy. It is also a model, and certainly no one fits either archetype 100% accurately. There are people across the entire spectrum, and people who have both traits at different times. I only observed that many of the comments by those diagnosed with some form of autism seemed to be mostly on the introverted end of the spectrum, and sometimes to an extreme. It's anecdotal evidence at best, and perhaps means nothing. Just an observation.
Programming was just an illustrative example. Certainly there are programmers who are very social and extroverted. However, if you went into 1000 random night clubs on a Saturday night and polled every person, it's a safe bet that the percentage of people who would rather be at home engaged in software development would be much lower compared to a group of 100k introverts. The fact that you may not fit that description, or that you know some people who don't fit that description, is at best anecdotal evidence.
Introvert-extrovert is a spectrum. The false dichotomy is that extroverts is not entertained by programming and/or other intellectual ventures.
It is simply a preconceived notion without any real evidence, much like the one that people wearing glasses is more intellectual than others.
There are good and bad programmers among both extroverts and introverts. I know a few introverts might wish things to be different, but there is simply no evidence at all for this. If you are to have an intellectual discussion about these things you have to let go of your preconceptions.
I very much appreciate it! Thanks so much for sharing. It's inspirational how positive you are, even given the frustrations you outlined. When so-called "normal" people treat different people so poorly, it makes me wonder who really has the disorder.
I can't really comment on all you have said. But you and a few others replying to you have echo'd the sentiment that "you wish you were invited even though you wouldn't have gone". People pick up on that. It really only takes one instance of turning down an invitation to go out and people will get the impression / idea that you don't want to hang out with them and cease inviting you. Especially if you don't make an attempt to reciprocate and invite them to do something.
Just 2 cents from someone who has experienced similar feelings.
> Some vocalize that they notice something is off and I might tell them about autism and give them an outline of what it means. If I tell them I often also ask if they can put it into concrete examples of what I do differently. They never can.
The people who can't give examples, can't because they're not emotionally sophisticated or developed enough yet where either 1) they can notice and articulate specific examples or 2) they're comfortable having a genuine discussion on the difficult topic. It's hard feeling like you're missing out, but if you apply yourself in your field and interests you might find that you can make more genuine and worthwhile friends elsewhere.
Not too weird at all! Enlightening, generous, and gratefully received here. Difference is not something our society, and it seems most societies, handle well. Here's hoping a better line is found between empowering and transforming.
"Every culture thinks that it knows the best way to care for babies. DeLoache and Gottlieb, both professors at the University of Illinois at Urbana-Champaign, have gathered fictionalized accounts, based on factual information and including a brief description of the culture, of how various societies throughout history and the world think their offspring should be raised. Each of these accounts is written in a style similar to Dr. Benjamin Spock's child-care manuals, but using the traditions of each represented culture to create an analogous guidebook. This is an entertaining and educational collection of invented guidebooks spanning the globe. Questions such as what is the key to a successful pregnancy, when to bathe the baby, how long to nurse, and how to celebrate the various ceremonies that revolve around a birth are descriptively explained through the eyes of societies such as the Puritans of New England, the Fulani of western Africa, and a Muslim village in central Turkey. This book is an intriguing opportunity to learn about other cultures."
I came to say something along these lines. I'm a severe traumatic brain injury patient, and as you might imagine, there have been a huge number of deficits. These ranged from (at first) linear and concrete thinking to (prolonged) poor planning and lack of social tact.
While brain injuries lie in a special place where you can change who you are, there is nothing wrong with living with a deficit. You go about life in a sane and rational way and deal with these deficits like anyone else.
That was the big aha moment for me. At first, I felt like there was something wrong with me and it had to be cured. Then one day I literally thought "I'm dealing with these issues like anyone would." That changed my view on the world; there was nothing wrong with me, just stuff I lived with.
"Beating" autism rings of the undertones of curing something wrong with you. While it's not desirable (at least for me. I haven't been exposed to the positives), there's nothing wrong with it.
I have a friend who is deaf; she had a bible-toting lady come up to her and say "God can cure you!" But she didn't even want to be cured. She's proud and grateful for her deafness.
I realize its a 'that guy' type thing to say but what you are describing sounds simply like the pains of growing up and realizing life involves doing a lot of shit you frankly don't want to do (based on a sample size of 1, with that 1 being me).
I was also a happy kid with no friends who tinkered with computers, now I am a reasonably social guy who will try his best to do as you do and obey the social norms I have spent the last 15 years or so trying to learn and master, but which I was blissfully unaware of when I was happy. And yes I will be miserable the whole time. I was never diagnosed with Asperger's though, although I was tested, I simply don't like people. I still miss a lot of social cues especially regarding hitting on people / people hitting on me. But I attribute that to the fact I didn't start trying to learn these things till I was 18 or so. My point is I can't go back to my childhood when I was happy, and I doubt you can either so try to move forward, and I wish you the best of luck finding a way to not be miserable, I know it's what I want for myself.
I'm not sad because I miss being able to play my Game Gear all day anymore. I'm sad because even though I've come far, I constantly second guess myself. I very rarely feel like I can have deep, meaningful interactions with people.
I remember back in high school, I deleted my Myspace, because only like 3 people wanted to be on my buddy list. And one of them was Tom Anderson.
Now, I "know" a lot of people. Whether you measure it through Twitter followers, Facebook friends, or whatever the hell they call connections on LinkedIn, people are connected to me. I'm actually getting to the point where people even sidle up to me at conferences, trying to curry favor - to network. Everything's coming up Millhouse!
But lately, I feel an intense loneliness that I never felt when I was "abnormal".
I very rarely feel like I can have deep, meaningful interactions with people.
lately, I feel an intense loneliness that I never felt when I was "abnormal"
Anecdotally, as someone who was never diagnosed with any kind of autism, welcome to the club :)
Seriously, as best I can tell adulthood is like that for everyone. You can still find those deep meaningful interactions, but they aren't common and they are probably with special people you have a deep rapport with, rather than somebody you met thirty minutes ago. It was so much easier to "connect" with people when I was younger.
If I am to wax philosophical, I would bet that's related to the development of the "sense of self". Young kids don't have as strong of a concept of identity, so it's easier for them to connect with others.
I would bet that's related to the development of the "sense of self". Young kids don't have as strong of a concept of identity, so it's easier for them to connect with others.
I think, beyond that, that there may be an underlying, motivating sense of the 'impending judgement' of one's actions by society. Whereas, a child in a lucky case may be essentially carefree, an adult is always subconsciously on the lookout for "person x in situation y may judge me z if i do that". Autistic people are often free of that: social comprehension, hardly unique to us as a species, is at once a freedom and a curse.
Growing up, a very close friend of one of my parents had a son who was autistic and slightly younger than me. They lived in the country, and we would visit them approximately annually. When it became apparent that he had autism, all of his behavior became explained through the lens of autism. He would run through fields, climb trees, chase animals, play with model tractors, make loud noises, inquisitively inspect minutiae of nature. One of his parents was an unrelated medical practitioner, and the pair of them dedicated immense time and energy to attending all possible events and reading all possible books to understand the nature of their son's condition. Because they could afford it, the father wound up spending all his time every day with the son, attempting to use various techniques to influence his behavior. Through the stop-motion perspective of our occasional visitations, it was apparent that slowly, he was achieving success. The son began to talk, and was exceptionally skilled with language, song, performance, drama and all of those qualities that are inherently social... precisely the elements that were perceived as missing from his life before-hand, but present in everyone else's "normal" experience of the world.
I made up my mind then and there that autism was not a bad thing, it was possibly a good thing... a rare situation in which children may be shielded from the tremendously judgmental, often vindictive and horrible, backward and limited perspective of society at large and its collected habits and wisdom, and instead allowed to develop freely through raw curiosity and thought. It is as if they are locked within their own Eden... and at least some of those who do eventually escape are far wealthier for it.
Yeah I get that, I really didn't make my thoughts very clear. I get that you want to be happy again, and not play game gear again (or even a modern equivilant). Part of my thoughts that I didn't express was that an equivalent or the same thing to what made you happy then likely won't anymore.
I get the loneliness, despite having friends I don't feel close to any of them. I never felt lonely when I didn't have friends. In my case, having something I have nothing but apathy towards, only seems to serve as a reminder of that apathy.
Sounds like you are way ahead of me in the socializing thing though, my followers, friends, and connections account for very few people, if you are able to care about even one of them please consider yourself lucky, because I as a person who has never had to deal with the stigma of being deemed "abnormal" have no one I care about other than my self.
I think it's actually a step toward what you want. That kind of relationship is fairly rare and you're not going to be able to feel it with everyone. Feeling a desire for a connection gives you a better chance of finding one :) For me, I just kept making more nominal "friends" (which I had never been good at) until I found a few that I actually liked. It's been 4 years of working on this and I feel like I'm only slightly better at it, but hey - at least I have some real friends now!
I don't believe your unhappiness is the result of being more social and what people probably consider 'socially normal'. I think it's the life-style you've chosen for yourself, maybe because you believe that's how you need to be or how everyone expects you to be. In the mid 90s you were younger and (i assume) had less things to worry about in life. Happiness is what you make of it.
I was told I have ADHD in the mid 90s, but looking back on it, I was just bored and never challenged, I was more social back then, went out a lot. But I can't say I was overly happy...
Now it's 2014 and I've moved from NZ to Asia and have fewer friends and am not as social as I used to be. In-fact I often avoid going out if I can. But I'm far happier, I'm programming all the time and love the challenge, and I get to travel around Asia and see how beautiful the world can be. I wouldn't change anything I have right now for anything.
I realise ADHD is far from the same as Autism or Aspergers. But I don't believe I faced any less challenges in life with doctors telling me I need to take drugs, to teachers telling my parents there was no hope for me and I would be a bum. (yes a teacher actually told my parents that I would be a bum living on the streets) And spending most of my schooling years sitting outside the principles office for getting in trouble, all the time.
One benefit would be increased ability to navigate/enjoy complex social situations and understand implicit cues. It sounds like although you were "cured" of Asperger's (whatever that means) you may still have been very much an introvert. This would explain why it was draining for you to go and glad-hand everyone. Another reply to your comment alongside mine seems to show the same experience. The other perspective: I'm an extrovert and it invigorates me to go meet people, while I feel somewhat anxious if I'm sitting alone all day with little social interaction.
I understand that, which is why I put it in double quotes and qualified the statement. It doesn't seem to me like you can flip a switch and be "cured." Another question -- what's the overlap/relationship between introversion and autism/Asperger's? I'm not saying introverts have Asperger's, I'm wondering if people with Asperger's are often also introverted. (lots of trigger-happy people thinking I said you had autism for being an introvert... which is not what I asked)
An introvert will lose energy rather than gain it in complex or highly active social situations, but will still emotionally feel a good connection with the person or people they're around. Someone with ASD has a much more difficult time "feeling" the positive benefits of socialization, whilst they may learn to enjoy it more from a left-brain analytical perspective. Not to say its a lack of empathy, in fact you can actively feel other's emotions in many cases, but the actual inner feelings of community and belonging may be pretty muted.
It seems like it would be important to distinguish between high-functioning autism & severe autism?
I mean, there's "That guy is a little weird" autism, and then there's "That kid can't communicate with anyone or perform basic motor activities" autism.
Thats exactly how I feel myself. I've learned all the social games and have a lot of friends, high levels of success both professionally and socially, but its extremely rare that I feel a real connection to the people I'm around. I always feel like I'm faking, and its somewhat exhausting to keep my face up. I was also diagnosed with ASD in the 90s, and had probably a 10 year old's social ability by the time I finished high school. I've made up for a lot of time very quickly, and I no longer feel behind but there is definitely something missing.
I was diagnosed with Asperger's in the mid-90s. I wrote about the experience anonymously for Boing Boing at one point[1].
But the TL;DR is that having lived in both "worlds", the experience of being "cured" was not worth it. The emotional costs were much too high - I just traded ASD for PTSD. I used to be a happy kid with few friends who tinkered with computers. Now I'm a very social guy who will shake your hand, look you in the eye, ask all the right questions to make you feel special. And I'll be miserable the whole time.
[1] http://boingboing.net/2013/01/05/pedagogyofthedepressed.html