
I Have Nonverbal Autism. Here’s What I Want You to Know - AndrewDucker
http://themighty.com/2015/04/i-have-nonverbal-autism-heres-what-i-want-you-to-know/
======
ppod
Without video of the typing it is difficult to believe these assisted
communication methods. It seems harsh but in the long run it isn't doing the
child any good. This RPM thing involves a lot of fees, and if it isn't the
real deal then it's horribly exploitative. Recent paper:

[http://www.tandfonline.com/doi/pdf/10.1080/17489539.2014.955...](http://www.tandfonline.com/doi/pdf/10.1080/17489539.2014.955260)

~~~
swombat
Your comment is not very clear. Are you saying the article can't be trusted
because the method used to collect the contents of it is not representative of
what the author is thinking? Or is influenced in some way? If so, wouldn't it
be fairly obvious, e.g. the article would seem like gobbledygook?

Please elaborate! :-)

Edit: This seems adequately explained by another comment:
[https://news.ycombinator.com/item?id=9563887](https://news.ycombinator.com/item?id=9563887)

------
fecak
Having a rather severe non-verbal (some single words or rote phrase) 11 year
old with autism, our biggest mystery is how much she does or doesn't
understand about us or about her own condition. Articles like this (again,
hopefully written by the subject) help give some potential insight.

Because she essentially has no voice, it's almost natural to talk about her as
if she isn't there. As she's grown we've been better about it, but because she
doesn't express emotion it's near impossible to imagine what she might be
thinking or feeling.

I have several dreams a year where she speaks. I'd expect other parents do as
well.

The strangest thing for me is to have a child that has never asked us a single
question. We see other families with 3 year olds that continuously ask "Why?"
to everything you say. When you hear other parents complaining that their kids
won't stop asking questions, I try not to remind them of the alternative.

~~~
autism_parent
Please don't give up. My son is 16. He still shows fairly severe symptoms of
autism. In all these years, I have longed to have one conversation with him,
but that has never happened.

However, to my surprise, he is also doing well academically through home
schooling. He started out with a lot of prompting but now he can demonstrate
his independent skill and mastery on fairly complex tasks - for example
multiple choice tests in high school Algebra or English.

By now, we know he is highly intelligent, but he has so many repetitive and
OCD behaviors it is hard for him to function in the real world.

He is learning to program and he shows some aptitude for it - he seems to be
somewhat good (not yet surprisingly good) at finding bugs in short pieces of
code. Our hope is that as he grows older, he will gain control of himself
enough to be able to function in some assistive setting.

~~~
fecak
Thanks for sharing. Giving up isn't an option. We've fully accepted the
possibility that we may be supporting her for our lifetime, with the hope we
can get her to the point of at least some level of personal independence.

I've read several articles related to autism and software testing. We aren't
nearly at that level yet, but your son could be a candidate for those
programs. Good luck to you as well.

------
autism_parent
I am an autism parent, who was similarly skeptical of prompting as many
comments expressed here.

My son, who appears completely uncoordinated with random repetitive behaviors,
would fit the typical pattern of many of these kids. Even now, if we take him
to a grocery shop, his conspicuous behaviors would cause people to stare at
him.

Yet, here is an experimentally testable concrete thing he can do: read a
complex English passage and answer a series of fairly non-trivial multiple
choice questions - for example "What is the tone of this paragraph? a) Irony
b) Sarcasm c) Sorrow d) Happiness" type of questions which you cannot simply
answer by trivial pattern matching.

No prompting would be necessary and this test has been performed without
parents being nearby, on totally new material. In fact, he takes these tests
often, partly because we could tell he gets some thrill from getting
everything right and that test-taking seems one of the rare times he seems
completely focused.

Originally, he was very prompt dependent (as many people mention here), so
even I was somewhat skeptical about his real skills, but now I have no doubt.

The reason I mention all this is that no casual observer, not even one who
spends hours together with him, would conclude he can do those things. He has
no motivation to connect or demonstrate his skills; yet, he now can
demonstrate he can do these things independently.

These kids are very complicated, so don't be too quick to dismiss them.

~~~
fecak
_Even now, if we take him to a grocery shop, his conspicuous behaviors would
cause people to stare at him._

I sincerely hope you still take him to the grocery shop. My daughter stims,
makes loud noises, has OCD behaviors, may hit her head, etc. and I make a
point of taking her to the stores several times a week. While it's good for
her to practice being in public, I also want the public to see her and that
there are others like her. As people with autism being in public becomes less
of a novelty, other children and adults will eventually learn how not to
stare, or in some situations how to help.

~~~
autism_parent
Yes, we do take him out, for the same reasons you mentioned. By now, _we_ have
lost any sense of shame or suffering about his behaviors. That was the thing
we had to master - our own emotional suffering seeing him stared at.

------
AaronFriel
We need to be very careful with this. And I mean we, the hacker community, we,
society at large, and we, people who genuinely want to reach those with
communication disadvantages.

I'll start with why: this may not be Philip writing to us. I would like to
believe it is, and those of us who may be on the autistic spectrum will not
find it difficult to believe that this writing is of the ability they had when
they were his age. That confirmation bias is but one of a number of cognitive
biases that impel us to find Philip in these words. We are, of course, social
creatures, and generally when we read heartfelt things like this we will set
aside our critical nature. When presented with new and plausible information
in the absence of anything that might indicate contrarily, we err to assume
that it is true.

But it likely is not. This blog highlights the "Rapid Prompting Method". This
method is not strongly supported in blind tests. There is little empirical
evidence that it allows persons with nonverbal autism to communicate, and in
fact, decades of failed trials that suggest that this and other methods of
facilitated communication do not work. It tugs at the heart strings, and it
pains me to say this, but it is sadly almost certainly not Philip expressing
these thoughts.

What is rapid prompting? It is a process of rapidly presenting someone with
options until they have produced sensible text. In practice, it looks like
someone guiding a person who is stimming as a human Ouija board[1]. The
practitioner silently omits incorrect options, just as superstitious teens
neglect digrams that don't make sense when they are found with a Ouija board.

This may be more than that, I would very much hope so. But the American
Psychological Association's position on all forms of facilitated communication
is firm: they are fraudulent[2]. Comparing rapid prompting to facilitated
communication has already been done, as has been written about in NIH-
supported journals[3]. These and other methods are woo, as the skeptical
community describes it: not science. This woo is perpetrated by unwitting
charlatans[4].

That harsh language is necessary, because we are doing something, I think,
much worse than merely mistakenly giving a voice to persons with nonverbal
autism. Instead, there are loving, adoring parents and "rapid prompting"
experts who are unwittingly casting their voice as another's. Instead of
undoing the silence of autism, they are turning people into dummies with a
textual form of ventriloquism.

What the hacker community should take from this is this: the desire to help
those persons who have nonverbal autism is going to be very strong, but you
can do great harm by making something that doesn't work. But if you're hacking
something together, if you think you have a way to help, be cautious. Don't
give in to the desire to "disrupt" this space. Instead, work with the
psychological community, work with those who study neurological development.
Don't just make something parents and loved ones want, make something _that
works_.

What society should take from this is that when people have their ability to
communicate taken from them, it is very easy to put another's voice in their
place and have everyone be none the wiser. It is very sad, but that is what
happens to many of those "assisted" with facilitated communication. And as
always, be skeptical of cures and success stories. It's easy to be swept away
by what we want to be true.

And finally, there are people who want to help those with communication
disadvantages of all kinds. For those people working on this right now: Take
that desire to make something that works, and rigorously apply the skepticism
the public should have - but doesn't - to what you're doing. That is vital, it
is key, it is the most important thing you can do. Don't allow wishful
thinking to turn a child with autism into a puppet.

[1]
[https://www.youtube.com/watch?v=xp3G8yM2vTg](https://www.youtube.com/watch?v=xp3G8yM2vTg)
\- One of many, many similar videos you can find.

[2]
[http://www.apa.org/research/action/facilitated.aspx](http://www.apa.org/research/action/facilitated.aspx)

[3]
[http://www.ncbi.nlm.nih.gov/pubmed/24102487](http://www.ncbi.nlm.nih.gov/pubmed/24102487)

[4]
[http://www.science20.com/countering_tackling_woo/blog/why_ra...](http://www.science20.com/countering_tackling_woo/blog/why_rapid_prompting_method_still_doesn%E2%80%99t_pass_evidencebased_test-68146)

~~~
midnightmonster
I agree that the youtube video you linked is not at all convincing as an
example of genuine communication.

I don't know anything about Philip's path to get where he is now, but there
are a number of videos of Philip using his current method of communication,
which appears to be typing on a bluetooth keyboard to an ipad app that repeats
his letters and words back to him.

The mom holds the keyboard, but Philip moves his own hand. Mom seems to use a
lot of cues to help him keep on track--shaking the keyboard to bring him back
to it, repeating his words back to him--but I really don't see her writing it
for him, moving the keyboard under his finger to spell things, or
"interpreting" vague gestures.

[https://www.youtube.com/watch?v=MK_Q60LhgzA](https://www.youtube.com/watch?v=MK_Q60LhgzA)

This one has several minutes of typing where you can see the keyboard and his
hand. It's slow, slow going, but it really looks like he's the one doing the
writing.

~~~
gus_massa
I saw the video. In my opinion, the mother gives slightly clues that make him
press the button when he has the finger over the correct key. It's not on
purpose, it subconscious. For example, it's enough to incline the keyboard a
little forward or backward. She moves the keyboard too much. Why does she have
the keyboard floating in the air instead of a inclined support?

A clear experiment is to replace the mother with a automatic keyboard shaker.
Some device with a button that moves the keyboard randomly to grab his
attention again, but most of the time the keyboard is completely still. Also,
during the experiment he should not see other persons, because it can send
another subconscious cues.

A well known case with less emotional weight is "Clever Hans"
[http://en.wikipedia.org/wiki/Clever_Hans](http://en.wikipedia.org/wiki/Clever_Hans)
. It was not a hoax or a scam, it was the unsuspected ability to read some
subtle clues. And Hash was a horse and he is a child. He is much more
intelligent than a horse!!! He probably is better reading expressions and
sublte clues. With some optimism, perhaps he even realized "Etaoin shrdlu"
[http://en.wikipedia.org/wiki/Etaoin_shrdlu](http://en.wikipedia.org/wiki/Etaoin_shrdlu)
are the more frequent letters and that makes the typing easier.

------
hrnnnnnn
That kid is a really good writer for a 12 year old. Very clear and to the
point.

~~~
lambda
Note that this was most likely written by his facilitator, not by him. It was
written via a technique called "Rapid Prompting Method", which appears to be a
variant of facilitated communication, a method that has been debunked as
simply being the facilitator guiding the child, either consciously or
subconsciously, to type things that the facilitator is thinking, not that the
child is thinking.

See
[https://en.wikipedia.org/wiki/Facilitated_communication](https://en.wikipedia.org/wiki/Facilitated_communication)
for more information. I also recommend the PBS Frontline documentary
"Prisoners of Silence" (transcript:
[http://www.pbs.org/wgbh/pages/frontline/programs/transcripts...](http://www.pbs.org/wgbh/pages/frontline/programs/transcripts/1202.html),
video:
[https://www.youtube.com/watch?v=HXw8Ksvyt5Y](https://www.youtube.com/watch?v=HXw8Ksvyt5Y)),
which does a good job both debunking it, and demonstrating why facilitated
communication can be quite harmful; there was a rash of incidents in which
facilitators imagined sexual abuse allegations from children, leading to
substantial repercussions for innocent parents.

~~~
ZeroGravitas
I didn't realise this kind of thing applied to people with enough motion
control to hold a cup of coffee as seen in the photo. Surely they can type on
an iPad themselves at that point, without the need for an interpreter or go-
between?

~~~
Rhapso
it is actually not about motion control. It is a fundamental inability to
communicate. I don't know much about this specific case, but it is quite
possible he could accurately hit arbitrary buttons, but cannot map those
actions to a meaning to be communicated.

------
nsxwolf
Well this took a dark turn. I never would have known about this RPM thing if I
hadn't read these comments.

------
memossy
The book "The Reason I Jump" is another excellent take, translated by the
author of Cloud Atlas. He wrote this via independent typing (not RPM) when he
was 13: [http://www.amazon.co.uk/The-Reason-Jump-silence-
autism/dp/14...](http://www.amazon.co.uk/The-Reason-Jump-silence-
autism/dp/1444776754)

It looks as if the ABA provision was sub-standard (RPM debate aside) as modern
ABA in the Verbal Behaviour mold should be adaptive and rely less on the
intensive table sessions (which are still a part unfortunately). Done
correctly it can provide the tools for communication, although not everyone
will be able to speak with words.

One thing that is interesting is that many of the principals of ABA are used
in our mobile apps today, I certainly learnt a lot when reviewing the research
and formulating my son's programme and vice versa implementing the ideas and
concepts to the mobile sphere..

------
wersplectior
>'Let’s pretend you are like me. You can’t talk, but you have a well-
functioning mind'

I thought that one of the few genuine insights made about autism is that so-
called autistic people have difficultly reading intentions (their own, or
other people's) or even appreciating what minds and intentions _are_. Which is
why they appear selfish, and why they're unqualified to make such statements.

Also sceptical that coercing people to behave in socially acceptable ways is
necessary or desirable.

People who are basically happy and left to develop autonomously will tend to
converge with social expectations as required. Maybe the spontaneous cures of
autism are examples of that: happy children, perhaps shielded from bullying,
whose parents supported them enough for this lengthy process to occur.

Whereas trying to train people like dolphins risks making them miserable and
thwarting that development.

~~~
dghf
> I thought that one of the few genuine insights made about autism is that so-
> called autistic people have difficultly reading intentions (their own, or
> other people's) or even appreciating what minds and intentions are. Which is
> why they appear selfish, and why they're unqualified to make such
> statements.

I don't think this is wholly accurate. My understanding was that people with
autism commonly have deficient _cognitive_ empathy (they have difficulty
discerning others emotions) but not _affective_ or _emotional_ empathy (they
get upset if they hear about others suffering).

With sociopaths, it's meant to be the other way round: normal (or better than
normal) cognitive empathy, but a lack of affective empathy -- hence their
purported skills in manipulation.

~~~
wersplectior
My guess is that if there's no sense of self or other then there's no getting
upset _about_ others: there's just upset or 'upsetness' (which others may
misinterpret as normal empathy).

------
corysama
Not the same, but related: a month ago there was a Reddit BestOf'd comment
from a self-proclaimed autistic describing his early life and current
situation. I found it fascinating.

[http://np.reddit.com/r/science/comments/33czht/study_of_9500...](http://np.reddit.com/r/science/comments/33czht/study_of_95000_children_finds_no_link_between_mmr/cqjwxkm)

