13 ms·

When Children with Autism Grow Up

171 points by clay_to_n 12y ago

granfalloon 12y ago
My wife is a teacher's aide at a school for kids with autism and various learning/developmental disabilities, and this weighs on her often. It's always in the back of her mind that in a few years the kids will age-out of the school, which often means it's off to a group home (an especially depressing thought for the kids without much money or family). I think that along with the below-living-wage salary, the seeming futility of her efforts make the job really difficult for her. She has to remind herself that improving her students' quality of life and giving them love/connection in the moment is worthwhile, even if there's no way to "protect" them from the realities of life after ~20.
- hoopism 12y ago
  This is an excellent and sad documentary about just that. http://www.washingtonpost.com/blogs/answer-sheet/wp/2013/06/20/best-kept-secret-how-a-teacher-helps-autistic-students/ http://www.washingtonpost.com/blogs/answer-sheet/wp/2013/06/...
mukundmr 12y ago
A meaningful life is necessary for existence of a human being. Such problems raise questions on where the line is drawn. All of the support systems and therapy don't do much to address the problem. The only hope is that medical research will make sufficient progress to be able to treat this condition in the future.
- deleted 12y ago
  [deleted]
- ideaoverload 12y ago
  There are many publications that suggest that autism spectrum disorders are caused by different neuron wiring compared to so called neuro-typical human. The nature of this differences is not well understood but it does not sound like something that can simply 'treated' EDIT: good article how some people are able to function with autism (which may look like treatment but it is not) http://www.nytimes.com/2014/08/03/magazine/the-kids-who-beat-autism.html?_r=1 http://www.nytimes.com/2014/08/03/magazine/the-kids-who-beat...
  - beobab 12y ago
    With some anecdotal evidence: my nephews autism (two nephews) have been improved (the symptoms lessened) by putting them on something called the "GAPS diet" for the past few years, moving them from pretty much being locked in a world of their own to interacting playfully with each other and making eye contact with trusted adults. Of course, this is not a scientific study, and there may have been other influences in their improvement. But a definite improvement has been made.
- falcolas 12y ago
  Not sure why you're getting downvoted, most of what you're saying is accurate. Our brains are wired wrong to participate in society without correction (internal or external); yet we still want to participate. I'm on the mild end of the spectrum, to the point where I barely notice the effects in my day to day life, and I too hope it's something which can be treated.
  - 300bps 12y ago
    Not sure why you're getting downvoted, most of what you're saying is accurate. He was getting downvoted originally for posting a pointless and silly response. He then edited it to its current non-sillyness. It's a shame that HN doesn't give you an indication when people do ninja edits like that.
    - falcolas 12y ago
      Aah, yes, comment versioning would be fantastic for this.
- ghettoCoder 12y ago
  Did you perhaps mean "purpose" instead of meaningful. Having purpose makes life meaningful. And yet, purpose is not dependent on physical or mental attributes. For example, my wife's 20 year old cousin with who has cerebral palsy(motor skills mostly ok, intelligence level of a 10 year old) is a curler in the Special Olympics and recently won the provincial cup. She has purpose in life but if I understand your position correctly its not meaningful because of her disability. Another example. I coach tykes football. I like having the younger kids and watching them learn and develop over a few years of ball. Every year we get new kids and every year we get one or two with varying degrees of ASD(obviously mild) or ADHD. And the one thing we agree on as coaches is to treat them all the same. Its amazing how much gaining a little confidence coupled with strong, steady reinforcement from a non-relative can go a long way in helping a child. I guess my point is that everyone can be given purpose in life. People shouldn't be shuffled away somewhere out of sight because they make us uncomfortable by reminding us how we won the life lottery and they didn't.
  - hyperpape 12y ago
    I agree with you, and think that it would be downright dehumanizing to think that your wife's cousin doesn't have a purposeful/meaningful life. My worry is that someone in Scooter's position has already been shuffled away. We don't know how Scooter perceives his situation, but we should be worried that he feels trapped, futile or meaningless.
    - ghettoCoder 12y ago
      Based on my experience with kids, scooter most likely feels trapped for various reasons: 1 - lack of internal coping mechanism (never taught that its ok to feel a certain way) 2 - the realization that he IS different without the accompanying external validation that it's ok to be different. 3 - a mostly aimless daily routine were one just waits out their days 4 - poor or no support network This is not much different than kids put into the Children's Aid system. Now that's another shit show that needs fixing.
kszx 12y ago
The part about "Wilbarger Protocol" sounds like torture. "When he was unable to regulate the information coming into his brain, I would perform a process called the Wilbarger Protocol. It was intimate. I would move a soft brush on Scooter’s arms, legs, neck, and back. Then he would put his hand in mine and I would grab his fingers one at a time, compressing the joints in toward his palm. Firm but gentle, confident but caring. I would watch his face, look for some tension to drop from it and then linger there, count to 10 in my head, and then move on to the next one."
- falcolas 12y ago
  Funny, it sounds very calming to me. Intimacy and physical contact from a trusted individual, done in a predictable and caring manner.
  - jsprogrammer 12y ago
    I'm not sure the people in the story were trusted by Scooter; it seems he had no real choice but to interact with them in rather banal ways. They seemed to regularly deceive or outright lie to him on at least several occasions throughout the story.
    - falcolas 12y ago
      > They seemed to regularly deceive or outright lie to him This would matter more if this wasn't how society runs in general. White (and not so white) lies are the lubrication of social interaction: when a random someone asks how your day is going, they don't really want to know. They want to hear something positive or perhaps a mildly amusing quip. Anything else and the social interaction breaks down uncomfortable silence. Took me awhile to learn that one. Scooter may have ended up interacting with society better, or worse, had he always been told the truth, but human interactions are never so clean. I have trouble faulting the narrator of this story for being human in such a difficult and uncomfortable situation.
      - jsprogrammer 12y ago
jasonlotito 12y ago
This is something that I think about frequently. I have 2 children with autism. One is fairly high functioning, the other is not. The reality of his future weighs upon me. He is still young, only 6, and I love him dearly (both of them). He is a happy child, affectionate (a rarity for autistics), loving. I dread the day we cannot properly care for him. The reality of his situation, of what his life will be once he gets older haunts me. I fear that life will eventually take that happiness from him, and he will not understand why. He stims, and recently it has started to cause bruising. Not much, and not frequently, but enough that I worry. I don't know what will happen when he grows up. I just hope that he will keep smiling, keep being happy. If I can help him keep that, that's all that will matter.
- hoopism 12y ago
  I live in Massachusetts. A bill was passed recently to help address some of this by establishing a tax vehicle for long term care. It also extends ABA services to kids on MassHealth (which an Autism diagnosis qualifies them automatically). Not sure where you are located. Hopefully legislation like this will be the norm nationwide. http://www.autismspeaks.org/advocacy/advocacy-news/mass-lawmakers-approve-medicaid-expansion-tax-free-savings-plan
  - jasonlotito 12y ago
    I live in Pennsylvania, and the Autism care is wonderful here (which is why we moved from Canada, which has incredibly bad autism "care"). The support we've received has been great. I believe we also have assistance for long-term care as well. Will have to look into that more carefully.
    - fecak 12y ago
      I used to live in PA, and I think the level of care depends on the county you live in. As you get farther from the Philly suburbs your experience may change. Different counties will have different intermediate units.
bronbron 12y ago
Hah! I've been thinking about this a lot lately ever since watching a documentary on a pretty internet-famous guy with autism (I'm not going to name him, but you probably know who I'm talking about if you've spent any time around the trollier parts of the internet). I was thinking about what the ideal solution is for a guy like that. I actually thought he should be moved to a group home, for both his sake and the sake of others. Jail is a really horrible place for well-adjusted adults, let alone those who aren't. > Can this be changed? I dunno. How would you change it? I think group homes are the right idea, though maybe not the right implementation. Unfortunately it's not straightforward unless you're interested in proffering platitudes that never seem to really go anywhere: E.g. "We should spend more on mental health." Many of us agree with that, but when it comes time to pull out our checkbook most of us show how much of a priority it really is. And that's not just because we're all dicks - there's just a shitload of terrible things going on in the world, and maybe mental health is priority #5 for us behind third-world poverty, or cancer research, or maybe we're just scraping to get by ourselves. Typically we count on family to be the support system for people like Scooter, and that works if the family's capable of that level of care. But sometimes it ends up that either the parents can't care for them and admit it, or more frustrating, can't care for them and don't admit it. Group homes are probably the best option for adults with special needs that fall into those two categories. Alternatively you could have a caregiver who acts like a family support system (checks in regularly, schedules appts, etc.) but that could be even more isolating - finding a peer group can be really hard even for more "well-adjusted" adults, and maybe a caregiver who treats you like family is actually really inappropriate if said caregiver has no intention of sticking around for the long-term. If the solution is "let's all just be accepting and mindful of people with different wants and needs than our own", well shit, yeah, let me know when that happens. History is pretty much summed up as the antithesis of that statement. Anyway, rambling over. It's a weird issue. I'm glad we moved away from sanitariums but I think we all agree we haven't come close to anything even good yet.
- jgmmo 12y ago
  red tshirt guy?
DanBC 12y ago
There's a problem in England where adults with autism are living at home with their family. And then something happens - a parent needs a hospital stay or the family need some kind of break - so the person gets sent to an inpatient setting for a "short time". While there no-one knows how to deal with that person and everything is different and so they start to exhibit "challenging behaviour" and then they become trapped in a kafkesque system. They need to be released so their behaviour will return to normal, they can't be released because their behaviour is not normal. Winterborne view shows what happens in some abusive care homes. (Some people have gone to prison because they were so abusive.) https://www.gov.uk/government/publications/winterbourne-view-hospital-department-of-health-review-and-response https://www.gov.uk/government/publications/winterbourne-view... This should be changing. Government has said that people should be released wherever possible and that support should be provided in the community rather than in hospital settings.
hoopism 12y ago
I couldn't get through the whole article... Partially because I am working and partially because the issue of Autism is difficult for me to read about. My daughter was diagnosed at 16 months. She is now 20 months, so this is all very new to us. The one thing I have learned is that if you have met one person with Autism then you have met one person with Autism. It's important to realize that Autism is a spectrum and therefore the needs of an individual can be very different and varied. The other thing I would like people who are fortunate enough to not have encountered Autism is that early and intense therapy is ABSOLUTELY crucial. If you are a parent and suspect something, DO NOT hesitate. If you see legislation that adds support for young children then support it. In the long run society will save a lot more money and lives if we address this early rather than later.
- fecak 12y ago
  My daughter just turned 11, and she was diagnosed just after she turned 2. Catching it at 16 months is a big advantage in the long run. A lot can change over time, and we've seen kids lose their diagnosis or have it altered. If you aren't yet involved with any parent groups, consider that option. I've found the community to be warm, helpful, and willing to share information or services, resources, programs, etc. Good luck to you and your daughter.
  - hoopism 12y ago
    We're fortunate that we have the support (family and education) to allow us to explore opportunities. We are very engaged with the community and are engaged in every therapy available to us. My mind though, when not consumed with doing all we can for my daughter, drifts to those parents who don't have families to help. Parents who can't afford to have one parents stay at home (my wife left her career as a Pharmacist, a big part of who she is). It's crushing to think that there are kids who could lose a diagnosis if they had the opportunities my child has. My daughter spends 30 hours a week in various therapies between speech, OT, PT and ABA. She's making amazing progress... but how do you scale that for a general population? My perspective on society and the services that ought to be a right has changed drastically. It's a shame it took something like this for me to see it.
jpetersonmn 12y ago
My daughter has autism, she's now 14. Her mom passed away in Dec 2011. It's pretty scary to think of the future for her when I'm not around. I make sure she spends a lot of time getting to know all of the people in our family, especially the younger kids. It's likely that someday one of them will be taking care of her.
brador 12y ago
What's the latest science on the cause(s) of autism? Google just gives me the anti vaccination sites.
- emsy 12y ago
  That's a huge problem and imo Google should act. This fuels the anti-vaxxers more than it needs to. Education is a key to fight this problem.
  - facepalm 12y ago
    Interesting, wonder if Google's algorithm is even prepared to rank "there is no good answer" as a good result. I mean it's optimized to provide good answers, if there is no good answer perhaps the algorithm just breaks apart completely.
    - digi_owl 12y ago
      A whole other issue is their bubble. Once you start clicking certain links etc, Google will take that history into account when sorting the results. Thus you get into a "positive" feedback loop...
    - emsy 12y ago
      I mean, there has to be pages that say: there are no good answers (but we also can't say it's vaccines). Also, I wonder why I'm being downvoted. Google meddling with search results is nothing new, sometimes they're even legally/politically forced to do so. Assuming we get unfiltered results is very naive.
    - VLM 12y ago
      "is even prepared to rank "there is no good answer" as a good result" Try an experiment, look at this this: No results found for "cow thiophenol romanesque establishment". The search result without the quotes seems to just be noise, any random page about cows or romanesque architecture or thiophenols.
      - 12y ago
ausjke 12y ago
Early intervention is crucial, the early the better. Silicon Valley has the largest group of Autism kids, while the cause is unclear, I believe it has something to do with IT-engineer-or-STEM-brain _statistically_.
- venomsnake 12y ago
  Can you provide links. Silicon Valley have state of the art health care in the tech community that allows early screening. But yeah ... there is engineering brain from what I see.
  - VLM 12y ago
    "But yeah ... there is engineering brain from what I see." I saw Temple Grandin speak at a state fair some years back, she's interesting, and I'm paraphrasing and probably misquoting but what I heard was something along the lines of if the species had to rely completely on neurotypicals, we'd still be living in caves and wearing hides, with a side dish of if a brain gets stuck or trapped on something like mathematical analysis of animal behavior as relates to architecture then we end up with her PHD dissertation revolutionizing livestock facility design, but much more likely if the brain gets stuck on lining up thomas the tank engine action figures, then the long term outcome is not so good. Also she had some opinions about discipline that were not the current mantras. No one at the event seems to like medication other than people with a financial interest in medication, I was surprised at that uniform consensus.
    - needacig 12y ago
      "if the species had to rely completely on neurotypicals, we'd still be living in caves and wearing hides" That's incredibly rude and condescending, and patently untrue.
- aidenn0 12y ago
  I seem to recall someone proposing a few years back that a significant fraction (though not all) of the uptick in Autisim could be explained by increased assortive mating.
digi_owl 12y ago
This reads like the upper end of the spectrum. How many of those diagnosed is actually up there? I keep having this suspicion that many that gets diagnosed function "fine" when left to their own devices, but burn out during (long) sessions of social interaction. And they come to the fore now as more and more of life become highly oriented around "face time".
- fecak 12y ago
  Those classified as on the 'upper end' of the spectrum may be less apt to seek an official diagnosis due to the potential for stigma. Parents of low-functioning children want an autism diagnosis as it allows for services in schools and some insurance coverage for therapies outside school. The parent of a high-functioning child may only want a diagnosis when the child nears adulthood, in order to get adult services. Many of those diagnosed are indeed 'fine', and some might be almost unrecognizable as autistic to an untrained eye. Once you've been around children with autism for a long time, you understand which traits reveal their condition. Long sessions of social interaction aren't likely to happen unless they are forced. Kids in classes are given several breaks a day, and might start at periods of 1-2 minutes without a break and build to 10-15 minutes without a break.
  - digi_owl 12y ago
    Heh, i may have flipped the scale on that one. Sorry about it.
deleted 12y ago
[deleted]
cbr 12y ago
Though the data we have is under constant scrutiny for its accuracy, methodology, and usefulness, the Centers for Disease Control reports that the current rate of autism diagnosis in the United States is 1 in 68. This is a continuation of a trend identified by the Environmental Protection Agency that started between 1988 and 1992, when the worldwide diagnosis of autism spiked from 6 in 10,000 kids to 24 in 10,000. The main problem with this data is that the definition of autism has expanded over time. The category of "aspergers", a relatively limited form, was eliminated and folded into "autism", making historical numbers hard to work with. This article is mostly talking about the most low-functioning forms of autism, for which the numbers are far far lower than 1 in 68.
- mistermcgruff 12y ago
  Yeah. Autism is diagnosed by symptoms and the symptoms have changed over time. It used to be that an individual had to actively avoid social contact. Now they just need to be socially impaired even if they seek contact. As the symptoms have changed and as awareness has increased in the medical community, so have diagnoses increased.
  - hoopism 12y ago
    I agree that it's not the insane uptick that the raw statistics would seem to indicate. But disputing that fact doesn't negate the fact that 1 in 68 kids has some form of disability (not saying you did... but I have seen that from some people as reason to dismiss the issue). I actually don't care one bit about the diagnosis itself. It's not as if having the diagnosis means you can take a pill to get rid of it. The only benefit we got from a diagnosis came from insurance paying for certain claims they previously would not have.
    - judk 12y ago
      And among those 1 in 68 are people whose brilliance in extricably tied to that disability -- including most of the greatest scientists of past and present.
- 12y ago
spiritplumber 12y ago
It's important that parents know how to deal with the matter, otherwise you get http://www.sonichu.com/ http://www.sonichu.com/
amaks 12y ago
What a great article. My son was diagnosed when he was 2, now he's 10. He doesn't talk, but he can read, do simple math, write a little. There is a lot in common with his behavior and Scooter's - outbreaks of aggression, biting, hitting. It's extremely difficult to expose him to the external world. There is a lot of great support from our school district though, and other kids at school seem to acknowledge the ASD and get along with them. I think society will get there, with proper school district support. At some point we won't be able to support our son (when he'll be teenager and then adult), and external help is extremely important in situations like ours.
tankerdude 12y ago
One of the school kids that is in the same grade as my daughter is autistic (and also absolutely brilliant on the asperger spectrum). He's had a social worker with him every day, in class, attending to him every day of his public schooling. (This is one reason why private schools do so well and cost less. Imagine spending $60K+ on one student per year.) His social skills are still not great, with an inability to focus on someone when they are talking, as well as biting and hitting others. He's incredibly smart though, with an ability to replay any piece of music that he just heard, and replay it on the piano. He's never taken a piano class or was taught piano in his life. Can his trajectory still change at the age of 11? It seems like the school is doing quite a bit, but he doesn't seem to progress and still stuck in the same behaviors as he was in the second grade (first time he was in the same classroom as my daughter).
- fecak 12y ago
  This sounds like what are usually called savants (historically were called "idiot savants", but thankfully the language changed) with some unique talent alongside some significant issues. It's probably likely he would outgrow the hitting and biting through various therapy, but impossible to guess much else.
- verisimilidude 12y ago
  Though it sounds like he's getting all the help he needs, whether he will outgrow the biting and hitting really depends upon his own individual slice of the autistic spectrum. My 35-year-old brother is also autistic with some incredible savant skills. During his teen years, he spent all of his free time reading maps; at one time he held much of the world's roadmap in his head. (I never use GPS; I just call him when I need directions.) However, he also struggles with severe anxiety and occasionally gets violent. With age, he has become more aware of his shortcomings. He can control himself to a limited extent—mostly by recognizing when he's about to melt down and then removing himself to a private place where it's safe for him to explode. But he still explodes. I always wonder how improved his life might be today if he had the benefit of the early childhood therapies that are more common these days.
brudgers 12y ago
The title of the article is poor. Children are called adults when they have grown up and that's what the subject of the article is, an adult. I'm not on some political correctness bender. Thinking about adults with autism as "grown up children" is at best neutral. Most likely it just feeds the misconception that adults with autism have the minds of children. At worst it suggests that children with autism growing up is problematic - and this is an idea that has long currency as the predominate attitude among western cultures. Nobody is writing articles the "When Children with Dyslexia Grow Up" or "When Gifted Children Grow Up" because we implicitly accept that people with these identifying traits are adults when they have grown up. Why not just call the article "Adults with Autism"? Because the article is largely about how bad being around an an adult with autism made the author feel. There's more about how hard it was to go into work than about his antagonist’s suffering childhood sexual abuse - and in narrative form the autistic adult is the author's antagonist no two ways about it. The arc is of the author disconnecting himself from the relationship. Now don't get me wrong, the freeing is a rational choice. But this is a story about the normal person and Scooter is always "the other." Casting him as "a child grown up" rather than an adult makes the ultimate "He aint my kid" decision palatable because it denies normal adult bonds - the author can't be held to the standards of an adult relationship: friendship and just plain good manners of saying goodbye because it is the right thing todo are off the table. It's really fucking hard to sort through and classifying adults with autism as grown children doesn't make it easier to get it right.
- zellyn 12y ago
  "When Children with Dyslexia Grow Up" or "When Gifted Children Grow Up" make perfect sense as article titles. In fact, a quick Google search yields a book for the second: http://www.amazon.com/Gifted-Lives-What-Happens-Children/dp/0415470099 http://www.amazon.com/Gifted-Lives-What-Happens-Children/dp/... I think the title structure would work for any domain where most reporting/writing focuses on the condition in children, rather than their later development as adults.
  - brudgers 12y ago
    The "What happens" that precedes the "when gifted children grow up" is about what happens to the individuals who were gifted as children. The book doesn't appear to focus on some burden they impose on the rest of society as the result of growing up or how that growing up makes the author feel badly about theirself. It is the stories of twenty gifted people, not our story about encountering them.
artmageddon 12y ago
I'm 32, and I have a younger brother who is 27 who has autism, and a pretty severe learning disability(not sure if they go hand-in-hand, but he's had it his whole life). My mother passed away a long time ago sometime after my 17th birthday, and my father and I have raised him as best we can since then. He graduated from high school quite some time back and has had a few jobs, but we haven't been able to find him any real work. We fear for the day that my father passes away and I'm not around to help take care of him :(
- fredgrott 12y ago
  I cannot remember where I saw the story but there is a firm in the US that is fully using autism people in some IT tasks..fulltime jobs..it may have been listed on Slashdot 2 months ago.. Sorry that I cannot remember the firm name
  - artmageddon 12y ago
    That kind of gives me some hope, honestly. He's sorta adept at using computers; he can navigate the web fairly easily, though reading is a bit of trouble for him(it takes him 5x as long as a normal person), he's been doing fairly well with online typing tutor sites as well as basic math courses in Khan Academy. I'll have to look around and see what I can find.
    - jcagalawan 12y ago
      I have worked with someone employed through a similar program during an internship at SAP.[1] Maybe there are opportunities available for your brother. [1]http://ca.specialisterne.com/about-specialisterne/sap-partnership/ http://ca.specialisterne.com/about-specialisterne/sap-partne...
  - fecak 12y ago
    I've read similar stories, and if I remember it was often QA. Those with autism may be more likely to prefer repetitive tasks, and will have a high attention to detail that might be useful in QA work.
jklinger410 12y ago
Can anyone explain to me why I should give a site like buzzfeed the time of day when discussing a serious topic? I don't even care if they're right. Buzzfeed has never, ever been a credible source for information of any kind.
- magic_beans 12y ago
  It's a very poorly-authored piece. Buzzfeed's content isn't exactly trustworthy.
- clay_to_n 12y ago
  They've actually done some good journalistic stuff in the last year or so. They're trying to expand to cover the whole range of "shitty clickbait" to intellectual journalism. Similar to the magazine Vice creating Vice News.

171 points by clay_to_n 12y ago

My wife is a teacher's aide at a school for kids with autism and various learning/developmental disabilities, and this weighs on her often. It's always in the back of her mind that in a few years the kids will age-out of the school, which often means it's off to a group home (an especially depressing thought for the kids without much money or family). I think that along with the below-living-wage salary, the seeming futility of her efforts make the job really difficult for her. She has to remind herself that improving her students' quality of life and giving them love/connection in the moment is worthwhile, even if there's no way to "protect" them from the realities of life after ~20.

hoopism 12y ago
This is an excellent and sad documentary about just that. http://www.washingtonpost.com/blogs/answer-sheet/wp/2013/06/20/best-kept-secret-how-a-teacher-helps-autistic-students/ http://www.washingtonpost.com/blogs/answer-sheet/wp/2013/06/...

mukundmr 12y ago

A meaningful life is necessary for existence of a human being. Such problems raise questions on where the line is drawn. All of the support systems and therapy don't do much to address the problem. The only hope is that medical research will make sufficient progress to be able to treat this condition in the future.

deleted 12y ago
[deleted]
ideaoverload 12y ago
There are many publications that suggest that autism spectrum disorders are caused by different neuron wiring compared to so called neuro-typical human. The nature of this differences is not well understood but it does not sound like something that can simply 'treated' EDIT: good article how some people are able to function with autism (which may look like treatment but it is not) http://www.nytimes.com/2014/08/03/magazine/the-kids-who-beat-autism.html?_r=1 http://www.nytimes.com/2014/08/03/magazine/the-kids-who-beat...
- beobab 12y ago
  With some anecdotal evidence: my nephews autism (two nephews) have been improved (the symptoms lessened) by putting them on something called the "GAPS diet" for the past few years, moving them from pretty much being locked in a world of their own to interacting playfully with each other and making eye contact with trusted adults. Of course, this is not a scientific study, and there may have been other influences in their improvement. But a definite improvement has been made.
falcolas 12y ago
Not sure why you're getting downvoted, most of what you're saying is accurate. Our brains are wired wrong to participate in society without correction (internal or external); yet we still want to participate. I'm on the mild end of the spectrum, to the point where I barely notice the effects in my day to day life, and I too hope it's something which can be treated.
- 300bps 12y ago
  Not sure why you're getting downvoted, most of what you're saying is accurate. He was getting downvoted originally for posting a pointless and silly response. He then edited it to its current non-sillyness. It's a shame that HN doesn't give you an indication when people do ninja edits like that.
  - falcolas 12y ago
    Aah, yes, comment versioning would be fantastic for this.
ghettoCoder 12y ago
Did you perhaps mean "purpose" instead of meaningful. Having purpose makes life meaningful. And yet, purpose is not dependent on physical or mental attributes. For example, my wife's 20 year old cousin with who has cerebral palsy(motor skills mostly ok, intelligence level of a 10 year old) is a curler in the Special Olympics and recently won the provincial cup. She has purpose in life but if I understand your position correctly its not meaningful because of her disability. Another example. I coach tykes football. I like having the younger kids and watching them learn and develop over a few years of ball. Every year we get new kids and every year we get one or two with varying degrees of ASD(obviously mild) or ADHD. And the one thing we agree on as coaches is to treat them all the same. Its amazing how much gaining a little confidence coupled with strong, steady reinforcement from a non-relative can go a long way in helping a child. I guess my point is that everyone can be given purpose in life. People shouldn't be shuffled away somewhere out of sight because they make us uncomfortable by reminding us how we won the life lottery and they didn't.
- hyperpape 12y ago
  I agree with you, and think that it would be downright dehumanizing to think that your wife's cousin doesn't have a purposeful/meaningful life. My worry is that someone in Scooter's position has already been shuffled away. We don't know how Scooter perceives his situation, but we should be worried that he feels trapped, futile or meaningless.
  - ghettoCoder 12y ago
    Based on my experience with kids, scooter most likely feels trapped for various reasons: 1 - lack of internal coping mechanism (never taught that its ok to feel a certain way) 2 - the realization that he IS different without the accompanying external validation that it's ok to be different. 3 - a mostly aimless daily routine were one just waits out their days 4 - poor or no support network This is not much different than kids put into the Children's Aid system. Now that's another shit show that needs fixing.

kszx 12y ago

The part about "Wilbarger Protocol" sounds like torture. "When he was unable to regulate the information coming into his brain, I would perform a process called the Wilbarger Protocol. It was intimate. I would move a soft brush on Scooter’s arms, legs, neck, and back. Then he would put his hand in mine and I would grab his fingers one at a time, compressing the joints in toward his palm. Firm but gentle, confident but caring. I would watch his face, look for some tension to drop from it and then linger there, count to 10 in my head, and then move on to the next one."

falcolas 12y ago
Funny, it sounds very calming to me. Intimacy and physical contact from a trusted individual, done in a predictable and caring manner.
- jsprogrammer 12y ago
  I'm not sure the people in the story were trusted by Scooter; it seems he had no real choice but to interact with them in rather banal ways. They seemed to regularly deceive or outright lie to him on at least several occasions throughout the story.
  - falcolas 12y ago
    > They seemed to regularly deceive or outright lie to him This would matter more if this wasn't how society runs in general. White (and not so white) lies are the lubrication of social interaction: when a random someone asks how your day is going, they don't really want to know. They want to hear something positive or perhaps a mildly amusing quip. Anything else and the social interaction breaks down uncomfortable silence. Took me awhile to learn that one. Scooter may have ended up interacting with society better, or worse, had he always been told the truth, but human interactions are never so clean. I have trouble faulting the narrator of this story for being human in such a difficult and uncomfortable situation.
    - jsprogrammer 12y ago

jasonlotito 12y ago

This is something that I think about frequently. I have 2 children with autism. One is fairly high functioning, the other is not. The reality of his future weighs upon me. He is still young, only 6, and I love him dearly (both of them). He is a happy child, affectionate (a rarity for autistics), loving. I dread the day we cannot properly care for him. The reality of his situation, of what his life will be once he gets older haunts me. I fear that life will eventually take that happiness from him, and he will not understand why. He stims, and recently it has started to cause bruising. Not much, and not frequently, but enough that I worry. I don't know what will happen when he grows up. I just hope that he will keep smiling, keep being happy. If I can help him keep that, that's all that will matter.

hoopism 12y ago
I live in Massachusetts. A bill was passed recently to help address some of this by establishing a tax vehicle for long term care. It also extends ABA services to kids on MassHealth (which an Autism diagnosis qualifies them automatically). Not sure where you are located. Hopefully legislation like this will be the norm nationwide. http://www.autismspeaks.org/advocacy/advocacy-news/mass-lawmakers-approve-medicaid-expansion-tax-free-savings-plan
- jasonlotito 12y ago
  I live in Pennsylvania, and the Autism care is wonderful here (which is why we moved from Canada, which has incredibly bad autism "care"). The support we've received has been great. I believe we also have assistance for long-term care as well. Will have to look into that more carefully.
  - fecak 12y ago
    I used to live in PA, and I think the level of care depends on the county you live in. As you get farther from the Philly suburbs your experience may change. Different counties will have different intermediate units.

bronbron 12y ago

Hah! I've been thinking about this a lot lately ever since watching a documentary on a pretty internet-famous guy with autism (I'm not going to name him, but you probably know who I'm talking about if you've spent any time around the trollier parts of the internet). I was thinking about what the ideal solution is for a guy like that. I actually thought he should be moved to a group home, for both his sake and the sake of others. Jail is a really horrible place for well-adjusted adults, let alone those who aren't. > Can this be changed? I dunno. How would you change it? I think group homes are the right idea, though maybe not the right implementation. Unfortunately it's not straightforward unless you're interested in proffering platitudes that never seem to really go anywhere: E.g. "We should spend more on mental health." Many of us agree with that, but when it comes time to pull out our checkbook most of us show how much of a priority it really is. And that's not just because we're all dicks - there's just a shitload of terrible things going on in the world, and maybe mental health is priority #5 for us behind third-world poverty, or cancer research, or maybe we're just scraping to get by ourselves. Typically we count on family to be the support system for people like Scooter, and that works if the family's capable of that level of care. But sometimes it ends up that either the parents can't care for them and admit it, or more frustrating, can't care for them and don't admit it. Group homes are probably the best option for adults with special needs that fall into those two categories. Alternatively you could have a caregiver who acts like a family support system (checks in regularly, schedules appts, etc.) but that could be even more isolating - finding a peer group can be really hard even for more "well-adjusted" adults, and maybe a caregiver who treats you like family is actually really inappropriate if said caregiver has no intention of sticking around for the long-term. If the solution is "let's all just be accepting and mindful of people with different wants and needs than our own", well shit, yeah, let me know when that happens. History is pretty much summed up as the antithesis of that statement. Anyway, rambling over. It's a weird issue. I'm glad we moved away from sanitariums but I think we all agree we haven't come close to anything even good yet.

jgmmo 12y ago
red tshirt guy?

DanBC 12y ago

There's a problem in England where adults with autism are living at home with their family. And then something happens - a parent needs a hospital stay or the family need some kind of break - so the person gets sent to an inpatient setting for a "short time". While there no-one knows how to deal with that person and everything is different and so they start to exhibit "challenging behaviour" and then they become trapped in a kafkesque system. They need to be released so their behaviour will return to normal, they can't be released because their behaviour is not normal. Winterborne view shows what happens in some abusive care homes. (Some people have gone to prison because they were so abusive.) https://www.gov.uk/government/publications/winterbourne-view-hospital-department-of-health-review-and-response https://www.gov.uk/government/publications/winterbourne-view... This should be changing. Government has said that people should be released wherever possible and that support should be provided in the community rather than in hospital settings.

hoopism 12y ago

I couldn't get through the whole article... Partially because I am working and partially because the issue of Autism is difficult for me to read about. My daughter was diagnosed at 16 months. She is now 20 months, so this is all very new to us. The one thing I have learned is that if you have met one person with Autism then you have met one person with Autism. It's important to realize that Autism is a spectrum and therefore the needs of an individual can be very different and varied. The other thing I would like people who are fortunate enough to not have encountered Autism is that early and intense therapy is ABSOLUTELY crucial. If you are a parent and suspect something, DO NOT hesitate. If you see legislation that adds support for young children then support it. In the long run society will save a lot more money and lives if we address this early rather than later.

fecak 12y ago
My daughter just turned 11, and she was diagnosed just after she turned 2. Catching it at 16 months is a big advantage in the long run. A lot can change over time, and we've seen kids lose their diagnosis or have it altered. If you aren't yet involved with any parent groups, consider that option. I've found the community to be warm, helpful, and willing to share information or services, resources, programs, etc. Good luck to you and your daughter.
- hoopism 12y ago
  We're fortunate that we have the support (family and education) to allow us to explore opportunities. We are very engaged with the community and are engaged in every therapy available to us. My mind though, when not consumed with doing all we can for my daughter, drifts to those parents who don't have families to help. Parents who can't afford to have one parents stay at home (my wife left her career as a Pharmacist, a big part of who she is). It's crushing to think that there are kids who could lose a diagnosis if they had the opportunities my child has. My daughter spends 30 hours a week in various therapies between speech, OT, PT and ABA. She's making amazing progress... but how do you scale that for a general population? My perspective on society and the services that ought to be a right has changed drastically. It's a shame it took something like this for me to see it.

jpetersonmn 12y ago

My daughter has autism, she's now 14. Her mom passed away in Dec 2011. It's pretty scary to think of the future for her when I'm not around. I make sure she spends a lot of time getting to know all of the people in our family, especially the younger kids. It's likely that someday one of them will be taking care of her.

brador 12y ago

What's the latest science on the cause(s) of autism? Google just gives me the anti vaccination sites.

emsy 12y ago
That's a huge problem and imo Google should act. This fuels the anti-vaxxers more than it needs to. Education is a key to fight this problem.
- facepalm 12y ago
  Interesting, wonder if Google's algorithm is even prepared to rank "there is no good answer" as a good result. I mean it's optimized to provide good answers, if there is no good answer perhaps the algorithm just breaks apart completely.
  - digi_owl 12y ago
    A whole other issue is their bubble. Once you start clicking certain links etc, Google will take that history into account when sorting the results. Thus you get into a "positive" feedback loop...
  - emsy 12y ago
    I mean, there has to be pages that say: there are no good answers (but we also can't say it's vaccines). Also, I wonder why I'm being downvoted. Google meddling with search results is nothing new, sometimes they're even legally/politically forced to do so. Assuming we get unfiltered results is very naive.
  - VLM 12y ago
    "is even prepared to rank "there is no good answer" as a good result" Try an experiment, look at this this: No results found for "cow thiophenol romanesque establishment". The search result without the quotes seems to just be noise, any random page about cows or romanesque architecture or thiophenols.
    - 12y ago

ausjke 12y ago

Early intervention is crucial, the early the better. Silicon Valley has the largest group of Autism kids, while the cause is unclear, I believe it has something to do with IT-engineer-or-STEM-brain _statistically_.

venomsnake 12y ago
Can you provide links. Silicon Valley have state of the art health care in the tech community that allows early screening. But yeah ... there is engineering brain from what I see.
- VLM 12y ago
  "But yeah ... there is engineering brain from what I see." I saw Temple Grandin speak at a state fair some years back, she's interesting, and I'm paraphrasing and probably misquoting but what I heard was something along the lines of if the species had to rely completely on neurotypicals, we'd still be living in caves and wearing hides, with a side dish of if a brain gets stuck or trapped on something like mathematical analysis of animal behavior as relates to architecture then we end up with her PHD dissertation revolutionizing livestock facility design, but much more likely if the brain gets stuck on lining up thomas the tank engine action figures, then the long term outcome is not so good. Also she had some opinions about discipline that were not the current mantras. No one at the event seems to like medication other than people with a financial interest in medication, I was surprised at that uniform consensus.
  - needacig 12y ago
    "if the species had to rely completely on neurotypicals, we'd still be living in caves and wearing hides" That's incredibly rude and condescending, and patently untrue.
aidenn0 12y ago
I seem to recall someone proposing a few years back that a significant fraction (though not all) of the uptick in Autisim could be explained by increased assortive mating.

digi_owl 12y ago

This reads like the upper end of the spectrum. How many of those diagnosed is actually up there? I keep having this suspicion that many that gets diagnosed function "fine" when left to their own devices, but burn out during (long) sessions of social interaction. And they come to the fore now as more and more of life become highly oriented around "face time".

fecak 12y ago
Those classified as on the 'upper end' of the spectrum may be less apt to seek an official diagnosis due to the potential for stigma. Parents of low-functioning children want an autism diagnosis as it allows for services in schools and some insurance coverage for therapies outside school. The parent of a high-functioning child may only want a diagnosis when the child nears adulthood, in order to get adult services. Many of those diagnosed are indeed 'fine', and some might be almost unrecognizable as autistic to an untrained eye. Once you've been around children with autism for a long time, you understand which traits reveal their condition. Long sessions of social interaction aren't likely to happen unless they are forced. Kids in classes are given several breaks a day, and might start at periods of 1-2 minutes without a break and build to 10-15 minutes without a break.
- digi_owl 12y ago
  Heh, i may have flipped the scale on that one. Sorry about it.

deleted 12y ago

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cbr 12y ago

Though the data we have is under constant scrutiny for its accuracy, methodology, and usefulness, the Centers for Disease Control reports that the current rate of autism diagnosis in the United States is 1 in 68. This is a continuation of a trend identified by the Environmental Protection Agency that started between 1988 and 1992, when the worldwide diagnosis of autism spiked from 6 in 10,000 kids to 24 in 10,000. The main problem with this data is that the definition of autism has expanded over time. The category of "aspergers", a relatively limited form, was eliminated and folded into "autism", making historical numbers hard to work with. This article is mostly talking about the most low-functioning forms of autism, for which the numbers are far far lower than 1 in 68.

mistermcgruff 12y ago
Yeah. Autism is diagnosed by symptoms and the symptoms have changed over time. It used to be that an individual had to actively avoid social contact. Now they just need to be socially impaired even if they seek contact. As the symptoms have changed and as awareness has increased in the medical community, so have diagnoses increased.
- hoopism 12y ago
  I agree that it's not the insane uptick that the raw statistics would seem to indicate. But disputing that fact doesn't negate the fact that 1 in 68 kids has some form of disability (not saying you did... but I have seen that from some people as reason to dismiss the issue). I actually don't care one bit about the diagnosis itself. It's not as if having the diagnosis means you can take a pill to get rid of it. The only benefit we got from a diagnosis came from insurance paying for certain claims they previously would not have.
  - judk 12y ago
    And among those 1 in 68 are people whose brilliance in extricably tied to that disability -- including most of the greatest scientists of past and present.
12y ago

spiritplumber 12y ago

It's important that parents know how to deal with the matter, otherwise you get http://www.sonichu.com/ http://www.sonichu.com/

amaks 12y ago

What a great article. My son was diagnosed when he was 2, now he's 10. He doesn't talk, but he can read, do simple math, write a little. There is a lot in common with his behavior and Scooter's - outbreaks of aggression, biting, hitting. It's extremely difficult to expose him to the external world. There is a lot of great support from our school district though, and other kids at school seem to acknowledge the ASD and get along with them. I think society will get there, with proper school district support. At some point we won't be able to support our son (when he'll be teenager and then adult), and external help is extremely important in situations like ours.

tankerdude 12y ago

One of the school kids that is in the same grade as my daughter is autistic (and also absolutely brilliant on the asperger spectrum). He's had a social worker with him every day, in class, attending to him every day of his public schooling. (This is one reason why private schools do so well and cost less. Imagine spending $60K+ on one student per year.) His social skills are still not great, with an inability to focus on someone when they are talking, as well as biting and hitting others. He's incredibly smart though, with an ability to replay any piece of music that he just heard, and replay it on the piano. He's never taken a piano class or was taught piano in his life. Can his trajectory still change at the age of 11? It seems like the school is doing quite a bit, but he doesn't seem to progress and still stuck in the same behaviors as he was in the second grade (first time he was in the same classroom as my daughter).

fecak 12y ago
This sounds like what are usually called savants (historically were called "idiot savants", but thankfully the language changed) with some unique talent alongside some significant issues. It's probably likely he would outgrow the hitting and biting through various therapy, but impossible to guess much else.
verisimilidude 12y ago
Though it sounds like he's getting all the help he needs, whether he will outgrow the biting and hitting really depends upon his own individual slice of the autistic spectrum. My 35-year-old brother is also autistic with some incredible savant skills. During his teen years, he spent all of his free time reading maps; at one time he held much of the world's roadmap in his head. (I never use GPS; I just call him when I need directions.) However, he also struggles with severe anxiety and occasionally gets violent. With age, he has become more aware of his shortcomings. He can control himself to a limited extent—mostly by recognizing when he's about to melt down and then removing himself to a private place where it's safe for him to explode. But he still explodes. I always wonder how improved his life might be today if he had the benefit of the early childhood therapies that are more common these days.

brudgers 12y ago

The title of the article is poor. Children are called adults when they have grown up and that's what the subject of the article is, an adult. I'm not on some political correctness bender. Thinking about adults with autism as "grown up children" is at best neutral. Most likely it just feeds the misconception that adults with autism have the minds of children. At worst it suggests that children with autism growing up is problematic - and this is an idea that has long currency as the predominate attitude among western cultures. Nobody is writing articles the "When Children with Dyslexia Grow Up" or "When Gifted Children Grow Up" because we implicitly accept that people with these identifying traits are adults when they have grown up. Why not just call the article "Adults with Autism"? Because the article is largely about how bad being around an an adult with autism made the author feel. There's more about how hard it was to go into work than about his antagonist’s suffering childhood sexual abuse - and in narrative form the autistic adult is the author's antagonist no two ways about it. The arc is of the author disconnecting himself from the relationship. Now don't get me wrong, the freeing is a rational choice. But this is a story about the normal person and Scooter is always "the other." Casting him as "a child grown up" rather than an adult makes the ultimate "He aint my kid" decision palatable because it denies normal adult bonds - the author can't be held to the standards of an adult relationship: friendship and just plain good manners of saying goodbye because it is the right thing todo are off the table. It's really fucking hard to sort through and classifying adults with autism as grown children doesn't make it easier to get it right.

zellyn 12y ago
"When Children with Dyslexia Grow Up" or "When Gifted Children Grow Up" make perfect sense as article titles. In fact, a quick Google search yields a book for the second: http://www.amazon.com/Gifted-Lives-What-Happens-Children/dp/0415470099 http://www.amazon.com/Gifted-Lives-What-Happens-Children/dp/... I think the title structure would work for any domain where most reporting/writing focuses on the condition in children, rather than their later development as adults.
- brudgers 12y ago
  The "What happens" that precedes the "when gifted children grow up" is about what happens to the individuals who were gifted as children. The book doesn't appear to focus on some burden they impose on the rest of society as the result of growing up or how that growing up makes the author feel badly about theirself. It is the stories of twenty gifted people, not our story about encountering them.

artmageddon 12y ago

I'm 32, and I have a younger brother who is 27 who has autism, and a pretty severe learning disability(not sure if they go hand-in-hand, but he's had it his whole life). My mother passed away a long time ago sometime after my 17th birthday, and my father and I have raised him as best we can since then. He graduated from high school quite some time back and has had a few jobs, but we haven't been able to find him any real work. We fear for the day that my father passes away and I'm not around to help take care of him :(

fredgrott 12y ago
I cannot remember where I saw the story but there is a firm in the US that is fully using autism people in some IT tasks..fulltime jobs..it may have been listed on Slashdot 2 months ago.. Sorry that I cannot remember the firm name
- artmageddon 12y ago
  That kind of gives me some hope, honestly. He's sorta adept at using computers; he can navigate the web fairly easily, though reading is a bit of trouble for him(it takes him 5x as long as a normal person), he's been doing fairly well with online typing tutor sites as well as basic math courses in Khan Academy. I'll have to look around and see what I can find.
  - jcagalawan 12y ago
    I have worked with someone employed through a similar program during an internship at SAP.[1] Maybe there are opportunities available for your brother. [1]http://ca.specialisterne.com/about-specialisterne/sap-partnership/ http://ca.specialisterne.com/about-specialisterne/sap-partne...
- fecak 12y ago
  I've read similar stories, and if I remember it was often QA. Those with autism may be more likely to prefer repetitive tasks, and will have a high attention to detail that might be useful in QA work.

jklinger410 12y ago

Can anyone explain to me why I should give a site like buzzfeed the time of day when discussing a serious topic? I don't even care if they're right. Buzzfeed has never, ever been a credible source for information of any kind.

magic_beans 12y ago
It's a very poorly-authored piece. Buzzfeed's content isn't exactly trustworthy.
clay_to_n 12y ago
They've actually done some good journalistic stuff in the last year or so. They're trying to expand to cover the whole range of "shitty clickbait" to intellectual journalism. Similar to the magazine Vice creating Vice News.