
When Children with Autism Grow Up - clay_to_n
http://www.buzzfeed.com/bplanten/when-children-with-autism-grow-up
======
hoopism
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.

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

[http://john.do/autism/](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/](http://john.do/fp-hn/)

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

:)

~~~
dyscrete
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

~~~
mst
I know some people who consider it an important part of their identity -
because, as exch says upthread, "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."

I also know plenty of people who're diagnosed and consider it one fact among
many and not worth much mention.

So I'm not sure "shouldn't" is quite accurate.

Maybe "even if autism is, to you, an important part of your identity, remember
that a diagnosis is meant to enable you instead of restrict you" better
expresses the meaning I -think- the rest of what you're saying implies you
were aiming for?

~~~
comex
On a related note, here is an essay written by a high-functioning autistic
person which I read once and found illuminating on the identity issue:

[https://www.fysh.org/~zefram/allism/allism_intro.txt](https://www.fysh.org/~zefram/allism/allism_intro.txt)

~~~
mst
Can recommend. He and I have worked together on many open source projects, and
drunk beer together.

He was one of the people I was thinking of as "part of identity".

------
DanBC
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...](https://www.gov.uk/government/publications/winterbourne-view-
hospital-department-of-health-review-and-response)

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.

------
jasonlotito
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.

~~~
teromajusa
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.

~~~
jasonlotito
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.

------
granfalloon
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
This is an excellent and sad documentary about just that.

[http://www.washingtonpost.com/blogs/answer-
sheet/wp/2013/06/...](http://www.washingtonpost.com/blogs/answer-
sheet/wp/2013/06/20/best-kept-secret-how-a-teacher-helps-autistic-students/)

------
jpetersonmn
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.

------
cbr

        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.

~~~
drzaiusapelord
>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.

~~~
cbr
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...](http://www.theguardian.com/society/2012/dec/02/aspergers-syndrome-
dropped-psychiatric-dsm)

------
artmageddon
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
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
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
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-
partne...](http://ca.specialisterne.com/about-specialisterne/sap-partnership/)

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

~~~
emsy
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
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.

~~~
VLM
"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.

~~~
shutupalready
Not to detract from your observation, but just as an aside, I wanted to
mention that less than an hour after your comment, googling for "cow
thiophenol romanesque establishment" (with or without quotes) lists this very
page as the first result. Google must be indexing certain sites (like HN) very
frequently.

------
tankerdude
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).

~~~
verisimilidude
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.

------
ausjke
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
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
"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
"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.

------
mukundmr
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.

~~~
ghettoCoder
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
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
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.

------
bronbron
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
red tshirt guy?

------
amaks
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.

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

------
brudgers
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
"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/...](http://www.amazon.com/Gifted-Lives-What-Happens-
Children/dp/0415470099)

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
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.

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

~~~
jsprogrammer
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
> 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.

~~~
Retric
I often hear this take, but I think it's overly simplified. It’s completely
acceptable to respond in a negative fashion to ‘how was your day’. People just
don’t want details.

So, “Stressful” or “Annoying” is fine. But “I had this one customer who…” is
not.

The only real lie is optional and it's mostly about how you want people to
think of you. If 10% of the time you’re slightly unhappy that's considered
reasonable, but if your unhappy 90% of the time people don't generally want to
be around you.

------
jklinger410
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.

~~~
clay_to_n
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.

