The Kids Who Beat Autism
nytimes.com
nytimes.com
Jackie’s son, Matthew, now 24, has not had that conversation with his parents. In fact, he barely has conversations at all. At the group home where he now lives, near a horse farm in the Berkshires, the staff can generally interpret the sounds he makes. Sometimes he types clues on the iPod Touch his parents gave him, because he long ago learned to spell the things that matter to him. But mostly he seems absorbed by his interior life.
...
The idea that Matthew won’t recover no longer pains Jackie. “At some point,” she told me, “I realized he was never going to be normal. He’s his own normal. And I realized Matthew’s autism wasn’t the enemy; it’s what he is. I had to make peace with that. If Matthew was still unhappy, I’d still be fighting. But he’s happy. Frankly, he’s happier than a lot of typically developing kids his age. And we get a lot of joy from him. He’s very cuddly. He gives us endless kisses. I consider all that a victory.”
I'm without words. Remarkable people.
Edit: if the above sound simple, don't think I would ever imply so. When you feel too tired to do anything, have some rest (if you can) and know that probably everyone, but at least we, felt despair many times.
Sure life can get difficult but reading your stories it seems that there is no difference between a 'normal' child and one a little different.
Edit: I wish to be a little more explicit. The choice discussion is void in my eyes, since society has already made implicit choices around this subject which form significant input to the individual decision processes. By sending conflicting signals and putting forward choice on the one hand and respect for life on the other, we are just shaking off a collective responsibility and handing it over to an atomic existence that we already alienate in this manner. Let's fix the social norms and then we can discuss more meaningfully. If in the middle ages people with Down syndrome were properly integrated in the society, the current state of affairs is telling of the brutality and barbarism of our modern societies.
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
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.
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.
Here's a blog post I wrote a while ago, that gives you the perspective of a 'client': http://cryto.net/~joepie91/blog/2014/04/07/depression/
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 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.
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.
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.
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.
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.
- 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.
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.
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.
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.
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.
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.
Just 2 cents from someone who has experienced similar feelings.
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.
http://www.amazon.com/World-Babies-Imagined-Childcare-Societ...
"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."
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 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 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".
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.
Yep.
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.
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 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.
No. We are never cured; we learn to cope if we have the mental capability. We are not cured.
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.
Things like toe-walking, repeating words or sounds (echolalia), limited or no eye contact, and an unwillingness or inability to point to objects are fairly easy things to observe in your own children or even kids you see around town.
The list in the link below is a good overview, and the few I listed above are considered 'classic' symptoms to look for.
http://www.mayoclinic.org/diseases-conditions/autism-spectru...
And then given the right information. My parents were told I might never cross the street alone or write the letter K in handwriting because it was too complex. Look at me: I type 500wpm and write software better than most in class.
The issues for me arise with planning and social things. I might make plans, but I am never able to stick to them if there is no real urge. If someone is not waiting for something to happen and I don't feel like doing it, it's not going to happen. If I think I can make something in 5 hours and the deadline is midnight, I might start on it 4 hours before midnight. And then there is a whole range of social issues, though I can go to a normal school and normal businesses.
My parents just disregarded the entire diagnosis at 6 years old because, look, I could cross the street not much later. Up until about 13 years old, this approach worked fine. It might have been nice to know what really is going on though.
I'm sure your parents are thrilled with your progress and the fact that you exceeded the expectations of so many people. Thanks for sharing your experience.
Yes, and I know that. Better this than the other way around. Then again, from what I heard at least, the doctors didn't mention that it might not have to be that way and that I might be able to do all the things they said I couldn't. That time would have to tell.
> I'm sure your parents are thrilled with your progress and the fact that you exceeded the expectations of so many people. Thanks for sharing your experience.
Thank you for saying that. Embarrassingly (but since this is a throwaway), reading that did make me spill a tear. Talking about it in this thread makes it negative; the way you put it makes it not all bad because I know my parents feel that way and I'm doing my best for them. Thank you.
New accounts are rate-limited because of past abuses.
> Twelve attempts later I've solved HN's captcha and created another account so I can comment again.
I'm sorry you went through that. I can't do it in fewer than a dozen attempts, or without screaming, either.
The captcha is a service of Google's and is currently borderline unusable [1]. But this isn't Google's fault so much as that captchas in general are just broken right now. We're using them as minimally as we can. In fact, everywhere the code currently invokes a captcha, it used to refuse to make a new account at all.
We marked your account legit so you won't get sent back to captcha hell.
1. It's telling that the images on their own site don't look anything like the cruel tricks they actually spring on users: https://www.google.com/recaptcha/intro/index.html
I really appreciate that YCombinator found someone with empathy to work in the capacity you do, dang. In general, there's way too little of it in the online world.
While on the subject, I might also mention that the guidelines ask me to mail info@ycombinator.com for questions instead of posting here. I would, it's just that:
> Delivery to the following recipient failed permanently:
> info@ycombinator.com
> Technical details of permanent failure: Message rejected by Google Groups. Please visit http://mail.google.com/support/bin/answer.py?hl=en&answer=18... to review our Bulk Email Senders Guidelines.
For the record, I never sent bulk e-mail to any address or service. It's really a hard reject and not just a push to the spambox. Google doesn't seem to care about individuals hosting their mail at home (usually I end up in spam, something Gmail users never seem to look in).
Not being able to comment normally and then not being allowed to email you because of a third party (which is too monstrously large to complain to) is quite annoying.
But the guidelines have been changed for a while to say hn@ycombinator.com. Can you try emailing us there?
I'm pretty sure that right now they're just using it to index street addresses, and maybe test some kind of number-recognizing algorithm.
[1] http://www.webmd.com/children/news/20120723/childrens-toe-wa...
My son toe-walked. We did some mild sensory-processing screening and therapy which helped. It also turned out that his tendons were too short and he needed serial casting to get them stretched out far enough.
If you combine this one with another couple symptoms, it's best to get it checked out.
Well, one of the keys is treatment early. Catching it early doesn't mean anyone is in any rush to treat it early. Don't trust the doctors if they say you can wait or they aren't acting urgently. Early intervention is key.
(Fourth throwaway I have to create for 6 posts despite 10 upvotes. The captcha is a real PITA to get through and by now I have to tether 3g to comment anything at all...)
That's wrong. He's learned coping strategies that let him deal with the negative characteristics of autism, enough that most people don't perceive him as autistic. That's excellent, an ideal outcome. I've done the same with my own autism. I haven't stopped being autistic. There are other traits, many of them positive, that will always be with me, just as they are for Mark.
There's this awful mindset that autism is a sickness, and if you stop acting sick, you no longer have autism. Mark's mother says, “Even doctors say, ‘Well, he must have been misdiagnosed, because a person can’t stop having autism.’ It’s so frustrating. Mark worked so hard. To deny everything he did to get this far isn’t fair.” I know she means well, and has done well by her son, but this shit makes me want to flip a table. Autism is not a mark of shame. There's nothing wrong with being a high-functioning autistic. We need to stop spreading this malignant notion that autistics are damaged by definition.
http://en.wikipedia.org/wiki/Positive_psychology
The theories in this field suggest that many disorders can be explained as the absence of certain knowledge and skillsets: in the case of autism, language skills and nonverbal social skills; in the case of depression, stress management and exercise habits, among others.
Another way to look at it is that there are actually several underlying causes of autism, not all of which must be present for symptoms to appear, and only in certain cases can it be reversed. It appears that a particular and persistent functional deficit in the children treated was that they did not understand how to get other people's attention: maybe various events or genetic factors in early childhood can inhibit the way this is normally learned, and maybe that learning process can be retriggered.
For example: If you become quadripelegic (or whatever), positive psychology can help you orient your life and attitude to accomplish your life goals and find happiness within the particular constraints of your condition, instead of feeling depressed and miserable and angry about your situation.
Positive psychology is a preference of goal states; behaviorism is an early theoretical approach (the first scientific approach to psychology) to studying minds.
I asked him if there was anything he missed about being autistic. “I miss the excitement,” he said. “When I was little, pretty often I was the happiest a person could be. It was the ultimate joy, this rush in your entire body, and you can’t contain it. That went away when my sister started teasing me and I realized flapping wasn’t really acceptable.
I have a son that "flaps" and we have been concerned about autism for about a year and a half now, since he turned two. He has some autism signs, but our developmental ped says not the classic signs. He can do eye contact, he is social, but he didn't speak, he did have the "daydream gaze."
We've been doing speech therapy now since he turned 2 and we've added an additional speech therapist since he turned 3. His progress has been remarkable, I can have a real conversation with him sometimes (granted, I have to infer a lot, but it's huge from where he was!). He has issues "taking turns", waiting in lines for camel rides at the zoo or getting on the carousel is really hard for him.
So, the flapping thing. My kid is great! I love him as he is! I want the best for him, I want him to be as "normal" as possible. But if he says what this kid says, that he was happier flapping, then I really hope he doesn't lose that. I love him as he is and I want nothing more for him than to be happy. We are extremely fortunate that he's not been diagnosed with debilitating autism and might have what's known as sensory perception disorder instead. But in the end, it doesn't matter, he's a great kid and he's happy and I want to keep it that way.
I didn't understand what flapping was until I read your comment and searched the op for clarification. Coming across the above quote was...I'm not sure what it was. I do feel a bit more sad about the situation after reading it though.
Please (and I recognize this is likely moot as you seem quite aware) consider what "normal" means and what its worth might be.
Right! I'm assuming everyone knows what flapping is, but it's not obvious! It's literally flapping your hands in ... anticipation? excitement? sensory overload? I don't know, but I think my son does.
> Please ... consider what "normal" means and what its worth might be.
Yes, I put "normal" in quotes for a reason as I don't particularly care too much about "normal." For me and my son "happy" is more important than normal for the most part. But, there is a huge issue. I chose to have children later in life (I'm 43 right now and my son is 3). So there is pressure on me and my family to make sure that whatever happens that my son is cared for and kept happy.
I can't guarantee that I can ensure he's financially taken care of after I'm gone. I hope that issue is far down the road and I hope it won't be an issue, but what if it is? Do I work on helping him to become "normal"? Or do I hope that I can provide for him no matter what?
So do I make the decision at all costs to make sure he's provided for by becoming "normal" or do I dash that to the wind and hope I make enough money to provide for him when I'm gone, but keep him happy?
There is a good reason to making sure that he can be productive in society at the cost of losing himself (if that's possible, no one knows that it is) vs. keeping who he is at all costs. Does that make sense?
I hope it's clear that I love him for who he is no matter what, but that I want to make sure that he has a "good" life for the rest of his life. Hopefully this is all moot as he's doing very well with speech therapy and occupational therapy.
Yes, that's very clear. I think considering who his father is, either way, he'll be just fine. I wish you both the best.
As an Asperger's myself, I have clear memories of trying to add curves to my movements to make them more normal, because I observed someone dancing badly. It was around the same age, so I guess it could be a developmental aspect in regions of the spectrum and not so much due to the specific reason assigned.
He once told me that I was in what he termed 'a risk group for having a child with autism'.
I was taken aback and he went on to explain that while there is no hard and fast rule, it had been noted that there was a prevalence of fathers with particular types of job, namely engineers and computer scientists, amongst the fathers of the autistic children they cared for.
Often the fathers (and on rare occasions the mothers), were also 'within the same spectrum', even if it just manifested itself as social introversion or 'geekyness'.
In retrospect I imagine this isn't often discussed with the parents since throwing 'genetic blame' around isn't exactly productive and it is widely believed that there is no singular 'cause of autism' anyway.
That is to say, the official DSM-5 definition of autism includes "Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning." I definitely feel like I share many of the traits, but they just make me socially awkward rather than significantly impairing me.
So I'll be shocked if there doesn't turn out to be a very significant genetic link. I suspect difficulties so far in finding it have to do with lumping too many people in as "autistic" while excluding too many people who are "sort of autistic." The classes still need a better refactoring. :)
I'm hesistant to talk about it, even in the relative anonymity of my HN username, but swathes of this article read like a script covering the past few years for us.
Thankfully, we've had great success, but not without constant effort and patience on all fronts - at home, out and about, when researching, when dealing with our county and state resources, insurance company and of course all the people who have very strong opinions on all things autism.
In a nutshell, I'm all for the sort techniques the article describes alongside a sensible definition of 'normal' and most importantly selflessness in seeking what's best for your child.
If anyone reading this has an inkling to chat, feel free to use the email in my profile.
We (my wife and I) wagered nearly everything - our financial resources, career changes, intense daily effort for years, endless therapies (PLAY, ABA, RDI, OT, PT, Aqua, you name it), and the gamble has "paid off". Upon first meeting few would pick up on our son's 'quirkyness'.
Our ABA records indicate it took my son 600 tries to learn the color red. Today, its his favorite color... and I'm perfectly fine with that. The process changed my son... but he's happy, well functioning, has friends, has opinions, has ideas (some kinda wacky!) but I'd do it all again in a heart beat.
Overall, the effort has cost us (financially, health, atrophied tech skills , even socially), but it's all worth it for him. There's no comparison between hearing a roaring belly laugh from him vs. him perseverating on some toy car.
Keep it up and I wish you the best!
Drs. Lynn and Robert Koegel of UC Santa Barbara[2] run a center for ASD treatment using PRT. The idea behind the center is significant parent PRT education.
I feel the urge to bring this up because whenever ASD is written about, no one seems to be up to date on the research. The vaccine/vitamin/mercury bullshit doesn't help.
Throwing this article[3] in here because everyone is talking about a "cure" for autism, while research is providing compelling evidence that there isn't much to be medically cured, really.
[1] http://en.wikipedia.org/wiki/Pivotal_response_therapy
Most people with autism have bad digestive tract problems and other inflammatory issues like asthma. Autism is a systemic disease, not simply something in the brain. This is also true of other "mental" illnesses such as schizophrenia and depression.
Some cases clearly present as a disease state, with autoimmune issues, neurological issues, etc. Whether these are comorbid conditions or really part of autism itself isn't clear at this point. The fact that children also commonly 'regress' following periods of normal development also argues in favor or some sort of disease state, for the same reason we call Parkinson's a disease.
I have a strong hunch that "Autism" as we know it will continue to be teased apart into a variety of more specific diagnosis. We've already seen this to some extent where other developmental disorders once lumped in with ASD have been specifically named following etiological discovery.
From my own experience: My son is autistic. I suppose he'd fall under the 'low functioning' side of the spectrum. He can't talk, doesn't understand language receptively very well, is incapable of controlling himself when excited, etc.
Anyway, I try to be involved (or at least aware) of every aspect of his education, and in doing so regularly visit his classroom. What strikes me most is that there is such large variability between 'autistic' individuals. There are some commonalities, unquestionably, but there are just as many differences. However, through regular observation I have noticed trends amongst the kids, or 'clusters' as I call them. I am sure social factors play a substantial role in the variability, but trying to see past that, it seems to me like there are different 'types' of autism.
Of course, I'm no autism researcher (though I've been involved in research at the MIND Institute), and don't pretend to be any sort of neuroscientist with only a BS in biochemistry and a few classes involving neurobiology years ago -- but I'm not the only one who notices this. It almost seems 'common knowledge' to the Occupational/Speech/Adaptive ...etc therapists and educators who deal with dozens of kids on a daily basis. That these subgroups of autism aren't more commonly researched/published really surprises me, and trust me, I look for them.
In time we'll uncover much more about neurological/genetic/epigenetic/microbial factors involved in these 'types' and probably result in a number of different formal diagnosis/treatments. I would not be surprised if those considered 'high functioning' are found to differ enough to warrant a separate diagnosis from those on the 'low functioning' side.
edit: a word
That regression seems to divide the Aspergers from the hard-core Autistics. Our son has Aspergers, as well, but is quite intelligent. Getting him to shut up about his own little world can be a challenge, though. He is learning to cope, and dealing with his issues is far preferable to low functioning autism. (unless of course one likes having ones house tore up most of the time, "potty breaks" in random spots around the house, and trying to keep a child from running out of the house who may or may not be dressed...)
I was amazed at how exhausting it is for all concerned, including the child. The costs are also astronomical since the process is extremely human resource dependent for a long time. For most families who are lucky enough to afford or be funded for an ABA program, the children often start aged 2+ and continue on until mid-teens.
Families are forced to give up almost everything to take part in these programmes. They have my utmost respect.
You don't cure Autisiam/Dyslexia or these sorts of learning disabilities you develop strategies to cope.
Autistic people have a difficult time of inferring social behavior. It does not come naturally to them. The behavior needs to be spelled out and explicitly stated.
Autistic people are programmable individuals, but the only problem is that normal people lack the interface to communicate with them.
I am glad to hear of the positiveness expressed in this article, but I do not like the over-sensationalized title "kids who beat Autism". No one ever 'beats' autism.
For the other parents out there, I don't know if they have it in your state but Ohio has things like the Autism Scholarship and grants from different Autism groups. Those really helped with those sessions not covered by insurance or being able to go to a school that provides a little more help.
We were very fortunate to be here in Baltimore, home of the Kennedy-Krieger Institute. Our pediatric neurologist there was very thorough -- and painfully blunt -- in describing what we needed to do, and what would happen if we did or didn't. We located a clinic nearby that works with children on the Autism spectrum. They specialized in Applied Verbal Behavior therapy. Walking into the clinic, you would think you entered a Chuck E. Cheese's. There are toys everywhere. Kids are running around screaming. And the adult therapists are doing the exact same thing! When I visited there for the first time only one thing came to mind: "These people are nuts. They're nuts, and we're going to give them $$$$ and our child and nothing is going to change."
I could not have been more wrong. Within HOURS of starting there he could tell us his name and his age whenever we asked. At first, it was obviously just memorized repetition - he said it the same way every single time. That's how it was with everything he learned at first. When he asked for water, he asked for it the same way every time. But, as time went on and he developed better pragmatic language skills, he began to "speak", not just regurgitate. As far as I'm concerned, the people there are miracle workers. He worked with 2 specific therapists during the 2 years he was there, and they showed him an immeasurable amount of love and concern.
At times, reading articles about Autism therapy -- and the comments that inevitably follow -- can be very upsetting. Often, I read about how ABA therapy ends up being traumatic for the child. While I am certainly no behavioral or Autism expert, I don't think that should be the case. My son's therapists certainly pushed him. There were certainly days that were very hard on him. However, days like this were not the norm. And he truly loved going there, because the way they instructed him was through play. They didn't sit him down at a table in an empty room and force him to do things. They simply met him where he was and connected to him there.
It's also quite upsetting to read the comments by parents -- and those with Autism/Asperger's themselves. Often I'll read things like, "There's nothing wrong with my child! They don't need to be 'fixed'!" I'll read comments from individuals with Autism along the same lines, and it's obvious that they have been judged and discriminated against their entire lives. It's wrong. As a father who loves my son more than anything in this world, I will simply say this: Was there "something wrong" with my son? Unfortunately, yes. From a neurological standpoint, absolutely. However, did I look at him like a broken DVD player and say, "There's something wrong with this. Let's get rid of it and get another."? Not a chance. Without the therapy that my son received, the odds are overwhelming that he would not be able to function on his own in society. He wouldn't have been able to go to school. He wouldn't have been able to relate to others or have friends. When my wife and I died, there's no way he would have been able to function on his own. We didn't get him therapy to help US. We got him therapy to help HIM.
Today, he's entering 3rd grade. He's got friends. He's HIGHLY verbal. In fact, he never stops talking. He's insanely intelligent, with math and reading skills approaching high school levels. It's wonderful to see. The only thing that hasn't changed is how loved he is. Does he still have problems? Definitely. He has anxiety issues, as well as ADHD. Rigidity is a major problem. Those are issues we're tackling now. But, I shudder to think about what he would have missed out on had we not gotten him the help he needed early on.
note to downvoters: I'm not complaining about not getting upvotes for a day-old submission. I'm confused as to how my day-old submission is suddenly, as of 10 minutes ago, on the front page?
The time decay on new submissions is aggressive. Good stories that don't get upvoted quickly tend to fall through the cracks. We want to make that less likely.
Your post got picked up by one of our experiments. Since dozens of people upvoted it almost immediately, and not for any obviously broken reason, I think we can call this data point favorable.
(I'm marking this subthread off-topic now so it stays at the bottom of the page and doesn't interfere with comments on the article itself.)
Some causes are "environmental" and of personal experiences, like childhood traumas or, which is the most common scenario, lack of proper treatment by parents and abusing by others as "being stupid". These conditions could be successfully treated by various CBTs, including those based oon "overcoming ignorance", to which I am myself a living proof.
But there are also various neurological disorders which cannot be lifted by mere CBTs.
So, the meme of autism as in characters like Rocky or Travis (these are the most "realistic" ones) or modern memes of autistic techies or hackers (with a very few well-known exceptions) are, well, a stupid memes. Life of an ordinary person with Aspergers (as they call us) is by no means a movie. It is just a severe condition of confusion, frustration and pain.
Unfortunately, modern media are made out of memes because common folks cannot grasp the subtleties of reality, which is indeed a not easy task.
So, non-neuroligical condition changed by a improvised CBT is not such a great news. These things happen routinely and quetly in the rest of the world.
http://en.wikipedia.org/wiki/Applied_behavior_analysis
"Applied behavior analysis (ABA), previously known as behavior modification,[1] is the application of operant and classical conditioning to modify human behaviors as part of a learning or treatment process. "
So yes, the approach described in the article is exactly the approach used when training an animal. And no, that doesn't mean the poor autistic kid isn't a human being... it means the principles of reinforcement learning are universal.
Perhaps in this case the approach worked because it was a way to teach the child without the use of language.
Edit: It would be helpful to know why I'm being downvoted in this thread. What I stated about the DSM-5 diagnostic criteria isn't wrong; that doesn't mean I agree with it.
How can you know that? I mean, you seem to be just restating the status quo against this article, but they've provided evidence against it, and you're not providing any evidence for it.
It doesn't seem like the kids have to do anything consciously such that they'd "become autistic" again if they stopped.
What's most interesting to me is that they can't tell what's going on inside young kids just by observing them.
Hi, autistic person here.
I was always relatively high-functioning, in some ways. I was always better than my peers at math and reading, but my social disability was crippling. In retrospect, I had a lot of the standard characteristics--repetitive movements, ADD, obsessive behavior, freaking out if things didn't fit my plans or expectations--but the inability to recognize social cues was the one that caused me the most trouble and pain.
And I fixed it. At some point in middle school, another autistic boy in my special-ed class was really annoying me, and I realized that he was acting exactly the same way I did. I could recognize it in him, but not in myself. So, to gloss over 20 years of effort and practice and failure, I taught myself to see myself as an outside observer, to judge my own behavior--first broadly, and slowly narrowing down to tone, word choice, and body language--as I would judge someone else's.
I'm pretty social these days. Most people don't know I'm autistic unless I tell them (which I do if it comes up; I'm not ashamed of it). A lot of the folks in the article would probably say that my autism had been cured. And they'd be full of shit.
I still obsess over minutae. Properly focused, it can be a genuine joy. It still really, seriously troubles me when plans are changed at the last minute, but most of the time I can take a deep breath and move on. I still stim, but I can suppress it around strangers. And, sometimes, with the right sort of data-analysis problem, I can apply the sort of absolute, crystalline clarity that people normally associate with Rain Man.
I am an autistic person who has learned good coping strategies. So are "B." and Mark Macluskie and Matt Tremblay and the rest. The article repeatedly mentions lingering autistic traits, like Mark's tactile aversions and Matt's flapping, but somehow they don't count. In this mindset, autism is a sickness, and if you're no longer visibly sick then you must not be autistic. That's bullshit. Autism is in the way your mind is shaped. It has good sides and it has bad sides. Some people, with the right treatment and insights, learn how to accentuate the good and minimize the bad. That's not a "cure," it's dealing with life.
Even ignoring the fact that DSM has major changes in every revision...
That's totally unhelpful. Use words to communicate, not confuse.
If I say "two plus two is five", and then explain it by counting "one, two, three, five", it's clear that I am using a different word, but I have the same idea as the common "two plus two is four".
When you seek to compate with a definition to empirical data, if the definition doesn't match, that means that the words we are using need to be clarified, not that the empirical data is wrong. (The data might be wrong, but "appeal to dictionary" is not a persuasive argument.
In a broader sense, this shows a fundamental flaw of psychology. I'm not saying I agree with the diagnostic criteria, but it's all we have.
Therapy is a way to teach him to interact and communicate with the world that doesn't quite fit his thought structure.
I'd say it's more than just teaching him how to fit in and appear normal, that's a side effect of teaching him how understand the 'alien' society he is in.
I like to describe it as though the part of my brain that would normally be processing one type of signal seems like it's been repurposed to process something different [0]. Social signals are incredibly difficult, but I can navigate complex structures in 3D space (think: levels in Descent or similar video games) easily. My son doesn't make eye contact, but he's 4 years old and can do fraction calculations in his head that my 10 year old students struggled with.
[0] note that I'm not claiming a specific physical mechanism, just describing how it feels -- things other people find easy I find incredibly challenging and vice versa, as if they have a dedicated brain-area for task X and I have one for task Y.
A cure that removes the apparent symptoms but doesn't cure the actual disease: is that gaming the system? And if so, well, so what?
DSM-5 explicitly states that the criteria may apply "currently or by history", which rules out a cure for autism by definition.
We are all a little different on the inside than we appear. See a popular HN topic, Imposter Syndrome.
Pass fifteen years; one day this family dines, and suddently the "mute" boy proclaims in displeased voice: There's too many salt in the porrige!
His father and mother hug him in tears and ask: Dear son, but why didn't you talk?
"Before today, everything was all right!"
----
It seems that autists really do have this attitude when it comes to interaction with other people (or avoidance of it).