When Children with Autism Grow Up

http://www.buzzfeed.com/bplanten/when-children-with-autism-grow-up

by clay_to_n • 11 years ago

171 124 11 years 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.

hoopism11• 11 years ago

This is an excellent and sad documentary about just that.

http://www.washingtonpost.com/blogs/answer-sheet/wp/2013/06/...

mukundmr• 11 years 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.

ideaoverload2• 11 years 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...

beobab• 11 years 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.

falcolas4• 11 years 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• 11 years 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.

ghettoCoder2• 11 years 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• 11 years 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.

kszx• 11 years 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."

falcolas4• 11 years ago

Funny, it sounds very calming to me. Intimacy and physical contact from a trusted individual, done in a predictable and caring manner.

jsprogrammer2• 11 years 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.

kuschku• 11 years ago

As a person who experienced this, while it slightly calms you down, it also can make you really angry if you don’t like it.

fecak16• 11 years ago

I can't speak for adults, but many children with autism seek pressure and need various sensory input. Brushing isn't all that unusual, and some kids actually will request brushing. There was a time when my daughter would bring brushes to us (she's non-verbal) to request it. Sometimes she'll want pressure to her face and head, or to be squeezed.

sswaner• 11 years ago

Finding the right balance of "stim" is really important to people with Autism. Too much or too little creates a panic. Temple Grandin's Hug Machine (https://en.wikipedia.org/wiki/Hug_machine) is another good example. This was a hard concept to grasp growing up in the 80's with a severely autistic younger brother, but became clear in later years when I worked at group home. My experiences were very similar to the OP.

Sanddancer• 11 years ago

Safe sensory stimulation is a very useful tool here. It's why Temple Grandin made the much-magligned "hug box", it's why weighted blankets are useful (need to get myself one of those). It's about building a place where the stimulations and noise of the world can be filtered out for a few moments.

There's a lot of literature about how Autism, and the various spectrum disorders, like the former Asperger's Syndrome are processing disorders. That the normal filters in a brain don't form for various reasons. And if a kid is unable to create those filters and work them actively, you get low functioning Autism, because they don't have a ruleset to focus on as to what are the important details and what aren't, thus leading very quickly to a level of overstimulation and "acting out".

Course, this is my assumption from talking to some High Functioning Autistics, and my own experience as being spectrummy. Mileage can and will vary.

timtd• 11 years ago

My autistic daughter is 3. She holds her arms up to me and says "scratch". I gently rub her arms with my fingertips. If I stop she will hold her arms out again and says "scratch". I have never heard of "Wilbarger Protocol" before reading this article but it exactly describes what my daughter is prompting me to do.

I once asked my daughter's therapist what she would be like as an adult. They politely decline to answer that question. Now I know why.

fecak16• 11 years ago

Actually, the reason the therapist (and almost all therapists for young children) won't answer that question is because outcomes have so much variation. I'm privy to the stories of many kids with autism (because I have one, and we're networked with other families) and we hear of children losing their diagnosis (being 'mainstreamed') and others at the point of being institutionalized.

It would be unprofessional for the therapist to say anything to try and predict the outcome for your daughter at age 3, as that prediction might impact your treatment and planning. If the therapist tells you to prepare for the absolute worst, you could be less inclined to try therapies that might work wonders. If a therapist tells you she'll be fine, you might also change your tactic.

Please don't assume that the therapist is withholding bad news, as that may not be the case.

jasonlotito4• 11 years 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.

hoopism11• 11 years 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

jasonlotito4• 11 years 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.

teromajusa• 11 years ago

You sound like me 10+ years ago. I also have 2 children with autism, one high functioning and the other not. My lower functioning child, also happy, smiling and in his way affectionate, is now 18, 6'3 and about 240lbs. We went through some rough times when he first hit puberty, and he can still have some pretty scary tantrums, but mostly he's a giant gentle loveable boy. So far life has not taken his happiness and I don't see that changing anytime soon. Can't say it will work out the same for you, but I just wanted to say that it can happen.

jasonlotito4• 11 years ago

Thanks for this. I know every child is different, but it's still good to hear these stories. I'd do anything to ensure his life is a happy life.

bronbron• 11 years 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• 11 years ago

red tshirt guy?

DanBC• 11 years 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...

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.

hoopism11• 11 years 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.

fecak16• 11 years 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.

hoopism11• 11 years 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.

jMyles• 11 years ago

What sorts of therapy are useful for a child at that age?

fecak16• 11 years ago

They usually start with ABA (applied behavior analysis) and perhaps occupational therapy and speech therapy. It's fairly intensive at an early age because early intervention can make a huge difference. Therapists are coming in and out of your house or child's classroom a few times a day.

hoopism11• 11 years ago

Depends on their deficiency. Most the time they have several delays developmentally.

Our daughter has difficulty in path planning (fine motor). She was delayed walking and as a result had low muscle tone. Her attention (eye contact, joint attention) was also poor, which made learning other skills difficult. Since very young she would hyper focus on objects like strings and would tantrum when you try to transition her to new task or object. The objects were usually not appropriate or typical and her interaction with them was not considered typical (repetitive behavior).

She now walks, has great eye contact and joint attention and is learning new words everyday (though still has some speech issues). She also plays more creatively and appropriately with toys... it's really opened up so much for her.

Mostly these are play based therapies. The difference is the way that tasks are broken down. For a lot of kids you have to master and work on REALLY basic steps for a long time before moving to even basic things (like stacking rings or requesting an object).

Any kid would benefit from these therapies, there is no magic to them. It's time and observation. We set goals for her then work with specialists to break down the operations and work with her to master fundamentals. Each new skill tends to unlock all sorts of other skills.

ABA is a trial based therapy that has a lot of good and bad information out there about it. It is basically what I just described but in a much more structured and documented manner. It's one of the more researched methods of treatment and has been proven to be highly effective. It's again tailored to the child, so there is no good way of describing other than to say that it emphasizes mastery of skills, errorless learning (no negative responses for wrong behavior) and intense hours (some kids do 40 hours of ABA a week alone).

As I mentioned, each kid really has their own set of issues, so it's tough to say what will work for each kid.

I read a few Behaviorist books when she was diagnosed. A lot of the therapies/techniques are really just good parenting advice.

saddington• 11 years ago

Just wanted to encourage you that autists can still have very meaningful and fulfilling lives... i am proof of that.

http://john.do/autism/

i mean... shit... even this autistic adult got on the front page of hacker news! fuck yeah.

http://john.do/fp-hn/

and i did it twice in the same week...

hoopism11• 11 years ago

Thank you. This was a great read.

dyscrete• 11 years ago

I just read your post, and though it may be hard sometimes just remember we are all unique and you shouldn't use autism to define you as a person. A lot of intelligent people experience these symptoms and psychs are always looking for your weaknesses to put labels on and prescribe pills for (I've been diagnosed differently 3 times, once with Aspergers). You are a smart individual, you don't need Aspergers to tell you that. Good read nonetheless, thank you for sharing.

EDIT: changed some wording

longlivegnu• 11 years ago

I am not sure where you lay on the spectrum but you appear to be very high functioning and possible only have Aspergers, which is rumored to lose specification in the Autism spectrum in the next DSM.

exch• 11 years ago

As a fellow, certified autist (High Functioning Autism diagnosis since 2009), this article resonates with me on many points.

Since the diagnosis, my life has improved 100 fold. Not so much because I got go to some courses and group meetings about the subject, but because I was finally able to understand who I was and why. All the weird and inexplicable things I saw in my past, suddenly fit. Like a giant puzzle you've been trying to solve for 30 years and in a matter of weeks, every piece just falls into place.

And more importantly, being able to explain to others who I am and not feeling the need to try to 'fit in'. I learned it is perfectly OK to be me and this almost solely improved my mood, energy and ability to function in daily life.

For those interested, I've also written up a few articles on my experiences in various daily things:

- https://jteeuwen.nl/autism/hfa.html - https://jteeuwen.nl/autism/a_night_on_the_town.html - https://jteeuwen.nl/autism/phonecall.html

_almosnow• 11 years ago

How can autism be diagnosed so early?

fecak16• 11 years ago

There are some tell-tale signs to be aware of in children or infants. Lack of speech, lack of eye contact, non-reactive to environment (seems deaf), no pointing. Repetitive behaviors and obsessions/compulsions can start to show early as well. Even things like toe-walking are very common (though toe-walking isn't exclusive to autism, but can be an indicator).

hoopism11• 11 years ago

A Neuropsychologist will usually administer several standard tests. At this age the tests are very unreliable. There are other signs of behavior they looks for.

Admittedly, we went into it thinking "maybe it's Autism, maybe it's not... but we can't get therapy for the delays unless we get the diagnosis". Having read substantially more and seen more children on the spectrum it's pretty clear. But it's a good question and by no means an exact science.

I recall a study that was done on early intervention (12 months I believe) where the majority of children diagnosed with Autism were able to shed their diagnosis by age 3 (or something like that). The trouble is that the initial diagnosis may have just been wrong... it may have just been a delay caused by something else. The good thing is that the therapy is beneficial for anyone... so there's little need (beyond monetarily) to be concerned with misdiagnosis.

EDIT:

fecak's list is spot on.

eutropia• 11 years ago

More promising on young children than tricky psychological evaluations, a professor at my university has shown that there are ways to diagnose autism from structural differences in the brain using MRI images and image processing techniques.

http://dx.doi.org/10.1109/ISBI.2007.356861 http://dx.doi.org/10.1109/ISBI.2007.357110 http://dx.doi.org/10.1007/s10803-008-0681-4 http://dx.doi.org/10.1007/978-3-540-75759-7_107 http://dx.doi.org/10.1177/1362361310386506

innguest3• 11 years ago

Check out what Dr Greg Siegle has to say about autism. He was a geek in IT prior to becoming a neuroscientist. He addresses autism in the last 20 minutes of this talk: https://www.youtube.com/watch?v=AjqrNPomIzg

jpetersonmn• 11 years 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• 11 years ago

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

emsy2• 11 years 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• 11 years 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.

innguest3• 11 years ago

I have a question that maybe you can help me with.

Why do people care that other people's children aren't vaccinated? If your children are vaccinated they're protected, period. Who cares about other people's children, especially if they have all sorts of unfounded ideas about vaccination? Why not live and let live? Why do people want to force other people to vaccinate their children? I never understood that but I'm sure I'm missing something hugely obvious.

I would vaccinate my children but I don't understand why I should also join some movement that is trying to force other people to do something they don't want.

fecak16• 11 years ago

One of the biggest issues with identifying cause (and many other topics around autism) is that we apply the term "autism" to a wide range of individuals. You have some who are incredibly high-functioning that qualify primarily due to their lack of social ability.

On the other end, you have some who are entirely non-verbal and often non-communicative in any form, entirely unable to care for themselves, and often have accompanying medical issues (gastro, immunity, etc.).

We call both autism, yet they are entirely different other than a few shared characteristics. Is it likely that both groups have the same cause?

netrus• 11 years ago

I am not a biologist, but from the press (yeah, no anti vaccination sites in Germany!) it is

- Do the parents have autism? - Is the father old? - Is the mother old? - Was the child born (very early)? - Did the mother have certain illnesses during pragnency?

http://www.neurologen-und-psychiater-im-netz.org/kinder-juge...

omnibrain• 11 years ago

(yeah, no anti vaccination sites in Germany!)

I'm sorry, but we have plenty of them. The visibility seems to be a bit lower though. Google for things like "Impfschaden" or "Hirnschrei"...

Or google the people who were involved in the making of this "documentary": https://www.youtube.com/watch?v=ZVh4QaDmXB8

digi_owl4• 11 years ago

Quite possibly as wide as the spectrum itself, a recent article i ran into talked about brainscans showing idiosyncratic across people on the spectrum, while "normal" people were more uniform.

nkrumm• 11 years ago

The underlying causes of autism are still not well understood, and are likely multifactorial and complex. Autism is fundamentally a disruption of the brain's neurological processes. This can occur within the neurons themselves, at the neural synapses (connections between neurons), or at a more structural/neural organizational level. As has been pointed out elsewhere, the diversity of autism is very great and this is certainly recapitulated at even the most basic neurobiological levels. Despite the high prevalence of autism, the complexity and diversity of the disorder has made it hard to study autism in labs, in epidemiological settings, and in treatment settings.

Nonetheless, it's possible to break out the causes of autism into two main groups:

1. Genetics. Based on large twin studies and family studies, it is believe that the underlying between 50 and 80% of autism cases are due to a genetic mutation, set of genetic mutations or otherwise influenced by genetics. The advance of sequencing technology in the past five years has made possible to sequence the genes in the human genome across thousands individuals with autism and their families. This has given rise to the idea that "de novo" mutations, new mutations which arise in the child, are a primary cause of autism. Every newborn has a set of new mutations, which are mostly benign or inconsequential. However, a small fraction of new mutations are detrimental to the production of key molecules or proteins needed by neurons to function properly. Researchers have identified that perhaps 20-30% of cases of autism have a new mutation which could plausibly underly autism. However, these mutations are incredible diverse-- the same de novo mutation is seen more than once only very rarely, and the top 5-10 most commonly mutated genes account for only ~1% of autism. The long tail makes it necessary to sequence tens of thousands of individuals to pick up signal. A second set.

2. Environment. It's thought (but poorly understood) that certain environmental factors, especially during pregnancy, could also underly autism. Alcohol, for example, can cause Fetal Alcohol Syndrome which can present with autism-like features. Unfortunately, this half of the equation is not my subject expertise so I'll leave it at that.

As a note about searching for information: While google can be unreliable, Google Scholar (https://scholar.google.com/) can be quite helpful.

Some additional resources:

[1] A review on the de novo genetic hypothesis for ASD that I wrote a few years back: http://www.ncbi.nlm.nih.gov/pubmed/24387789

[2] A large sibling/twin study from California about that heritability of autism: http://www.ncbi.nlm.nih.gov/pubmed/21727249

[3] A recent large-scale sequencing study for autism (sorry, paywall): http://www.ncbi.nlm.nih.gov/pubmed/25363768

[4] A review of ASD epidemiology and etiologies: http://www.ncbi.nlm.nih.gov/pubmed/17367287

--- Edit: formatting linebreaks

paulornothing• 11 years ago

A lot of the talk lately has been linking older fathers to a rise in autism. The theory being that higher chance of mutations with sperm as you get older (and as you have been introduced to more radiation, carcinogens, etc).

http://www.nytimes.com/2014/02/27/health/mental-illness-risk...

ausjke• 11 years 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• 11 years 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.

VLM2• 11 years 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.

aidenn0• 11 years 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.

drzaiusapelord2• 11 years ago

Tech career people also have kids much later in life. Perhaps the latest of any group. Autism and age of mother are clearly linked:

http://www.webmd.com/brain/autism/news/20100208/autism-risk-...

No need for Rand Paul vaccination conspiracies or some hand-wavy pseudo-science about "tech brains." Humanity has had techy people since day one. Its not a new thing.

digi_owl4• 11 years 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".

fecak16• 11 years 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_owl4• 11 years ago

Heh, i may have flipped the scale on that one. Sorry about it.

cbr2• 11 years 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• 11 years 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.

hoopism11• 11 years 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.

drzaiusapelord2• 11 years ago

The main problem with this data is that the definition of autism has expanded over time.

How do we know this is the case and not that it was under-diagnosed in the past? I also see this logic with ADHD. Yet in the past, a lot of these children would be shoved off to group homes or labeled 'slow' and such. At least with diagnosis they have a chance for recovery. I don't think past diagnosis stats are unquestionable. We actually don't know what the real rate should be. At least not yet.

cbr2• 11 years ago

Some cases are ambiguous, as fuzzy definitions change over time. In this case, however, a name that once applied only to relatively severe cases has been intentionally expanded:

    The term "Asperger's disorder" will not appear in the
    DSM-5, the latest revision of the manual, and instead
    its symptoms will come under the newly added "autism
    spectrum disorder", which is already used widely. That
    umbrella diagnosis will include children with severe
    autism, who often do not talk or interact, as well as
    those with milder forms.

http://www.theguardian.com/society/2012/dec/02/aspergers-syn...

clay_to_n4• 11 years ago

It's certainly both. The definition has literally expanded (now including Asperger's), but with more awareness it's more likely people who are borderline autistic will be able to get diagnosed.

This all makes it very hard to answer the question "are more people today autistic than 50 years ago?"

amaks• 11 years 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• 11 years 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).

fecak16• 11 years 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• 11 years 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.

brudgers2• 11 years 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• 11 years 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/...

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.

brudgers2• 11 years 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.

magic_beans3• 11 years ago

There was a LOT wrong with this article and the author's perspective. He even calls his impulse to help Scooter "the narcissism of altruism".

clay_to_n4• 11 years ago

I think the point of the name is that public perception of autism is usually related to children - autistic kids. But those children grow up and become adults. A lot of this article is about how that transition is difficult, and there is a lot less support for autistic adults than children.

I did not interpret the antagonism you did. The author was grappling with his own feelings of being attached to Scooter but also having to deal with the fact that Scooter could get violent very easily. The decision to not say goodbye was justified in the article. This is not a normal adult relationship, because the author is a paid caregiver of an autistic adult.

artmageddon3• 11 years 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• 11 years 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

artmageddon3• 11 years 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.

fecak16• 11 years 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.

erroneousfunk2• 11 years ago

My boyfriend is a house director for an organization that takes care of developmentally disabled adults. Unlike the author of the article, he's been doing it for 14 years and loves the work. At his company, each house (there are a dozen houses) has 4-6 adults with full time staff and 24/7 care. It's not an "institution," it's a nice little New England home in the suburbs, everyone has their own bedroom, everyone has jobs or activities they go to every day, they get help managing their finances, they all contribute to cooking (as much as they're able), meal-planning, activity and event decisions. They focus a lot on independence and goal-setting, get their medical appointments managed by people who have known them for years (no getting "lost in the system"), and the organization as a whole has really low turnover -- both with staff, and the clients living in the house (so they form really close friendships). It's really a great place, and most of it is paid for by the state (food stamps, welfare, various grants).

Far from being "institutionalized" the guys he works with (and they're all male -- there's are separate homes for women) really feel like a family, and they get better, and more knowledgeable, support in the house than they often might living with aging, or distant relatives.

I know homes like these have gotten a bad reputation, but there are some really excellent organizations out there, and there's no shame in saying "you'd probably be better off at a place that's designed to support your needs."

artmageddon3• 11 years ago

Do you have an email that I could reach you at? I'd love to find out more.

jklinger410• 11 years 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_beans3• 11 years ago

It's a very poorly-authored piece. Buzzfeed's content isn't exactly trustworthy.

clay_to_n4• 11 years 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.

When Children with Autism Grow Up

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