
A 17 Year Old with Severe Autism and His Six Completed Coursera Courses - alecco
http://blog.coursera.org/post/51976868541/not-impossible-the-story-of-daniel-a-17-year-old-with
======
thinkcomp
As someone with an autistic sibling I find feel-good articles like these
immensely frustrating to read.

As you read them, just keep in mind that there is no agreed-upon definition of
"autism" or "Asberger's Syndrome". (Nor does autism exist on a defined one-
dimensional spectrum, contrary to popular belief.) Each individual is wildly
different. So "severe autism" in one person might mean that person can't talk.
In another it might mean they have seizures. In another it might mean they can
hold a conversation but can't tie their shoes. The media tends to gloss over
this major issue, and in so doing it wrongly connects many poorly-understood
discrete neurological disorders.

The upshot is that even though it may be great that this particular individual
benefits from Coursera, the vast majority of "autistic" individuals I have
come across are not capable of processing anything that might be taught in a
college-level course. Coursera cannot help them, although perhaps some more
basic technologies might.

For those interested, my father has written about these general points here:

\- Autism and the Media [http://www.huffingtonpost.com/neil-s-
greenspan/autism-and-th...](http://www.huffingtonpost.com/neil-s-
greenspan/autism-and-the-media_b_560906.html)

\- Conceptualizing Autism: "Cloud" vs. "Spectrum"
[http://www.huffingtonpost.com/neil-s-greenspan/autism-
concep...](http://www.huffingtonpost.com/neil-s-greenspan/autism-
conceptualizing-au_b_586546.html)

\- Major Obstacles for Adults with Autism [http://www.huffingtonpost.com/neil-
s-greenspan/understanding...](http://www.huffingtonpost.com/neil-s-
greenspan/understanding-autism-in-a_b_527697.html)

~~~
mapt
As a fellow sibling of a severely autistic individual, I concur on all points.
The word, which connoted a depressingly debilitating constellation of symptoms
in cognition, communication, and perception when my sister was diagnosed, has
been redefined year by year inside and outside of the psychiatric community
until it means very little, subject to self-diagnosis based on perceived
social anxiety among high-performing, high-IQ individuals who are able to
initiate conversations, appreciate comedy, lie convincingly, have
relationships, and master smalltalk.

She will never take part in the debate about whether an 'Aspie' gets to call
themself 'ASD' or 'Autistic' or 'HFA', because she is not able to understand
or speak about such topics; She will never be able to campaign against the
'neurotypicals' efforts to create a cure or prevent the condition from
occurring. She will never be able to read how Jenny McCarthy cured her son of
his seizure disorder or decide whether it constituted autism or speculate
about thiomersal.

People like her are not able to speak up for themselves, and they've been
quietly robbed of a word for their conditions. In some circumstances, this is
extremely problematic; Seeking help from the state hinges on such words. The
24/7 caretakers that have been required since my family reached the breaking
point has only been possible with a lawyer and a series of lucky breaks in
state funding & local politics - with 2013's definition of 'Autism', the
planets might not have aligned the same way.

Autism was _never_ a terribly precise syndrome. Mental health is full of '6
out of 10 symptom' checklists; I like to visualize them as 'constellations'
rather than clouds, because they exist on their own - we just draw the lines
along things that seemed to be clustered. It is the particular looseness of
the Autistic Spectrum that's allowed linguistic creep. I don't assert that
early-childhood regression, severe cognitive disabilities, barely-lingual, no
eye contact, compulsive behaviors, self-harm, stimming, problems with loud
noises, and seemingly random inappropriate decisions like disrobing or running
into traffic or poking a stranger or trying to enter an interesting-looking
house are the canonical Autism. However, they constitute _something_ ,
something almost completely different than many of the people I meet who claim
to be autistic, and the language has progressively failed us in description.

~~~
mapt
I would add that facilitated communication is one of the most tragic things I
can imagine - equally so for the family and the facilitator who realizes
they've been speaking the whole time. The picture accompanying the story is a
textbook FC pose - we can only hope that's not what's going on. One almost
wants to leave a long-time FC believer alone - delusion may be better than the
emotional footprint of a debunking. Autism itself is emotionally brutal
enough; If I learned I'd been helping my sister communicate desires and
express opinions and write poetry for years as some kind of sick puppet
master, I'd kill myself.

~~~
dsrguru
First of all, I don't mean to insult you or your expertise on the subject. I
know very little about autism spectrum disorders and nothing about this
"facilitated communication" debate.

However, that Daniel's parents are unconsciously inventing his written voice
and, therefore, inventing virtually everything we know about his cognition
seems to be a huge assertion to make with very little evidence. The article
says the parents would "hold his hand _while he spells_ " (emphasis mine). I
could see parental bias (a la ideomotor effect) playing a role in guiding the
subject when the answer is one choice out of several discrete options, but it
seems impossible for that kind of placebo effect to play out in spelling
words, where the sequence of letters would have no meaning to the parents
until a word or morpheme was already complete or almost complete, let alone
sentences. Has research indicated that facilitated _spelling_ can and, as you
suggested, normally _does_ just result in the parent talking? I really hope
the answer is no...

~~~
lambda
I'd recommend watching the PBS documentary Prisoner's of Silence. Transcript:
[http://www.pbs.org/wgbh/pages/frontline/programs/transcripts...](http://www.pbs.org/wgbh/pages/frontline/programs/transcripts/1202.html)
Part 1: <http://www.youtube.com/watch?v=HXw8Ksvyt5Y> 2:
<http://www.youtube.com/watch?v=19eAMcgn2QU> 3:
<http://www.youtube.com/watch?v=oHqRTDW9Irk> 4:
<http://www.youtube.com/watch?v=PctmzkrJmcg> . It shows just how the
facilitator bias plays out; when they do a blinded study, where they show both
the facilitator and the subject a picture, but only sometimes show them the
same thing and sometimes show them different things, it winds up being what
the facilitator sees that gets typed, not what the patient sees.

People doing this kind of facilitated communication, had previously written
entire sentences, paragraphs, poems, and so on this way. And it was all, as
far as the experiments show, the facilitator, not the patient, who was really
writing it. Some of the facilitators had no idea; they really thought that it
was the patient writing everything, and they were just helping support the
patient's hand. A few of them renounced FC after this, realizing it was just
them subconsciously writing for the patent, but some continued to persist in
their belief that it really was the patient writing despite the strong
evidence to the contrary.

Have you never had an experience where you attributed reasoning to a pet's
actions? Sometimes we can tell what a pet wants, and so we can reason about
what they are doing; sometimes we might be wrong about it. There are plenty of
cases where you have a good guess based on other information, like the pet
getting hungry at the appropriate time. If you tried doing "facilitated
communication" with your pet, and really believed that it worked, you would
probably wind up spelling out things like "I'm hungry" when it was hungry; and
then take that as evidence that your pet really was writing that, not you.

In fact, this kind of reasoning is used all the time in research that shows
that you can teach animals human language, or sign language, or the like. You
get researchers who learn a lot about the animal; learn about its attitudes
and ways of non-verbally expressing itself. Then they start reading things
into the signs or sounds the animal makes, and present it as evidence that
they've taught the animal language. But if you do any kind of experiment that
takes that particular researcher out of the picture, or provides a reasonable
level of blinding, all of that ability goes away, and you hear them talk about
how "well, they can't perform under these kinds of stressful situations."

You might think "well, so what, it's at worst something harmless that makes
the family feel better." But there have been cases where via facilitated
communication, kids (or based on the above research, their facilitators), have
accused their parents of sexual assault. Fathers have had to move out of their
houses and fight long legal battles on the basis of an accusation that, most
likely, was simply made up by prompting of the facilitator. Believing that
facilitated communication works without strong evidence that it's the patient
and not the facilitator in control can have some serious consequences.

But if you point this out, especially in relation to a feel-good FC story like
this one about someone completing college level coursework through FC, you
just sound mean and contrary. I would love to believe that advancing
technology and therapeutic methods allow people who cannot learn via a
conventional methods to have access to knowledge they never would have
otherwise. But given the lack of strong evidence that FC really works, these
feel-good stories sound more like people just trying to sell more snake-oil
than an actual breakthrough.

~~~
polymatter
(<http://www.damninteresting.com/clever-hans-the-math-horse/>) is a real life
example of that sort of bias in play. Its a bit more of a fun read than the
PBS documentary.

------
woofyman
Facilitated communication hasn't been scientifically validated.

<http://en.wikipedia.org/wiki/Facilitated_communication>

If you look at the picture in the article, he isn't even looking while his
father guides his hand.

~~~
mattstocum
"Not scientifically validated," is being awfully generous. It doesn't work,
plain and simple. The facilitator is the one responding in 100% of cases.

You not only can see the father guiding his hand, but Daniel isn't even
looking at the board. I would challenge anyone to respond to a question by
poking at an iPad, without looking, while someone else holds their hand.

~~~
mamcx
Because a autistic person don't look directly to you don't mean is not looking
_at_ you. Is very common to them of see "away" and pay attention to thing in
front or in a side.

The problem is, is VERY hard to decipher what a autistic person is doing and
why.

------
kqr2
Also recommend the Frontline documentary which debunks facilitated
communication.

[http://www.pbs.org/wgbh/pages/frontline/programs/transcripts...](http://www.pbs.org/wgbh/pages/frontline/programs/transcripts/1202.html)

~~~
haberman
Great read, thanks. The part that most astounds me is how the facilitators
could be totally unaware that all of the thoughts were coming from their own
heads. It just seems like it would tip you off to notice that everything the
autistic person was "saying" was something you were thinking.

~~~
roguecoder
This is why Ouija boards are so creepy; it's easier to attribute the behaviors
to outside forces than parts of our own brain we aren't consciously aware of.
It disrupts the illusion of a cohesive "self", which we kind of need.

------
shele
Judging from the photo, that might be facilitated communication* and this
raises the question, /who/ completed these 6 Coursera courses.

* <http://en.wikipedia.org/wiki/Facilitated_communication>

------
Aardwolf
"He suddenly learned to answer questions by picking the answers out, one
letter at a time, on a letterboard."

I hope that this letterboard is now a computer keyboard instead...

I think online chat must be a fantastic way for autistic people to
communicate, at least given what I have read in books about it. I once read
about an autistic person who was unable to speak to people but he could write
them, but this book was from the eighties (titled "If I could talk to you").
That really made me wonder if that person is posting on the internet today.

~~~
mattstocum
It is done with a computer, in this case it appears to be an iPad. The problem
is you have a facilitator, "steadying" the hand of the person who is
communicating. In reality, the facilitator is actually guiding the person's
hand, most likely without being aware of it themselves. It's easy to see why
parents believe this method works. If you had a non-communicative child, and
were suddenly told, just by pointing at this board, your child can talk to
you, and his first words are, "I love you dad," you'd want to believe that
more than anything else.

~~~
VLM
"and his first words are"

One of my kids had some pretty serious medical problems resulting in some
speech delays. This is just barely before "all problems must be solved via a
tablet" era. So the speech therapists were all into sign language and then
pictograms and eventually he started talking when he got around to it. Other
people are like "yeah my kid started talking just out of the blue one day" and
I'm all feeling that's like throwing lego pieces in the air and they come down
full assembled, although supposedly it happens. Anyway I'd be really
suspicious of any first words other than "more" as in candy and treats and
toys and stuff. Carb addiction sets in early I guess. Basic needs were
discussed long before discussions of kissing up to mom and dad.

Watching kids learn language makes me wonder about the standard sci-fi trope
of humans and space aliens learning language via math or sharing physics
constants. Probably adult human vs adult space alien will learn each others
language via sharing pr0n pixs and pixs of junk food. Actually that kinda
resembles what I've seen on 4chan. That would make a very interesting sci fi
story if the concept were expanded on. For better or worse I think Hacker News
is probably not a primary choice location for space alien first contact,
compared to say facebook, youtube comments, or 4chan. Presumably space aliens
would have their own little weird green space alien 4chan and would come to
the same conclusion, thus a realistic tolerance and shared understanding would
result.

I suppose this will lead to the inevitable start up idea of creating a space
alien attracting social network. Or just buy reddit rather than develop it as
a startup.

~~~
lotharbot
> _"I'd be really suspicious of any first words other than "more" as in candy
> and treats and toys and stuff."_

It's pretty interesting to see what words people pick when their vocabulary is
very limited (like, 5 or fewer words). When my son had severe speech delays,
we focused on teaching him signs like "hungry", "more", "diaper", and "help".

I was actually quite grateful to have played a game called "Og" where players
take on the role of cavemen, typically with vocabularies of that size. We
learned, through experience, that words like "I" and "mom" are nowhere near as
important as "food". I, too, would be suspicious of first words (for someone
with severe delays) that weren't addressing specific momentary needs.

> _"yeah my kid started talking just out of the blue one day"_

Mine had some very sudden increases in his speech. There was about a month-
long period where my list of all of his spoken vocabulary ballooned from about
a dozen words to well over a hundred. I wouldn't say it was "out of the blue",
but instead the result of quite a bit of intensive therapy, focused
communication from all of the adults in his life, and his own growth.

~~~
eitally
For breastfed babies, a very common first word is usually a variation of "ma".
For my daughter, her first word after "mama" was her brother's name (Noah).
Then they learned the bottom rung of Maslow's Hierarchy via sign language at
school (more, please, thank you, milk, food, mom, dad, child).

<edit> Both of my kids had sudden rapid improvements in speech at some point,
too. I can't remember, when, and I know it happened earlier with my daughter
than my son, but I still remember the day my son was answering a question and
started with "Actually, ..." and then later on, "Even so, ...". He was two.
Close together siblings are fantastic teachers!

~~~
DanBC
Children learn words, and say them, but then don't bother repeating those
words until they've built up a vocabulary of about 200 words.

So that's one reason for one of the language-jumps.

But it is fascinating. My son has one phrase which he speaks with a local
accent, but the rest of his language is different.

------
aaron695
Looking briefly at this it seems this is classic facilitated communication.

Unfortunately this it a form or magic some families of autistic children get
tricked into believing and it is quite sad Coursera is perpetuating this awful
lie.

------
jngiam
Coursera's hiring designers and engineers (frontend, infrastructure,
analytics, mobile)! Join us in making a difference.

<https://www.coursera.org/about/jobs>

(I'm part of the team there =) )

------
thezach
Disclaimer: I am on the Autism Spectrum... at most times higher functioning
but I have my days where i can be obsessive or sensory issues and other things
to the point of not really being functional.

Autism is a spectrum... sadly the parents of children that have a harder time
communicating want to claim those on the spectrum that can communicate aren't
autistic or don't know what its like to be a lower functioning autistic. The
higher functioning ones get upset at parents who claim they are not autistic.

Its bad seeing so much infighting in the Autism community. If people as
passionate as those in the Autism community were to work together they could
accomplish a lot. But because of the infighting trolls like Autism Speaks are
the ones speaking for the Autistic Community while were all having this
private war.

------
aashaykumar92
Heartwarming read. Glad to see that people with disabilities can truly benefit
from online education.

~~~
roguecoder
As long as there is another person available full-time to caretake and
facilitate?

~~~
apalmer
uhh thats still definitely a 'benefit' if true...

------
touristtam
There is an article with similar thematic in the lastest "new scientist":
[http://www.newscientist.com/article/mg21829194.300-rise-
of-t...](http://www.newscientist.com/article/mg21829194.300-rise-of-the-
autistic-workforce.html)

------
tudorconstantin
What's you excuse? - I don't have one - I only successfully finished about 3
courses, while I got 2 finished but with below required percentage and started
about 10.

~~~
tsm
That's awfully condescending and presumptuous, don't you think? I've taken
zero Coursera courses (but did take the original AI course with Norvig and
Thrun), but have been busy taking max credit loads at school, TAing, becoming
the lead dev at a startup, and starting my own startup. I'm sure a ton of
people here can say something similar. MOOCs are great--as highlighted by the
article--and I intend to take more. But there are other worthy things to do
too. "The good is the enemy of the best."

~~~
tudorconstantin
I don't want to judge anyone but myself, but when a guy with severe autism is
able to finish 6 courses and I am not, it doesn't quite matter that I am full
time employed while trying to build 2 startups, being married, having a kid
and getting involved into local community by being an active member of the
second largest political party in romania

~~~
ruswick
This is incoherent. You are comparing a deficit in literal ability to complete
the courses (through some sort of disorder) with an inability to find the time
to complete them. Just because someone is "autistic" does not mean that you
necessarily ought to be able to achieve more than them, especially when there
are wildly divergent constraints for both of you. There is no logical basis
whatsoever for your assertion.

