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I Have Nonverbal Autism. Here’s What I Want You to Know

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Re: I Have Nonverbal Autism. Here’s What I Want You to Know

#41

Post by lotharbot »

mapt wrote: post #19
mapt wrote: post #18

Earlier quoted context omitted.

This is likely above the 95th percentile writing skills for neurotypical twelve-year-olds, and uses anachronistic language to boot. When's the last time you heard a twelve-year-olds using words like "I am weary", or" for causing so much hardship.", or idiomatic abstracts like "another way of being". If you took a neurotypical kid and duct-taped their mouth shut up to age 12, you would be robbing them of the vast majo…

Take this passage from the blog and consider the tone and language, and ask yourself whether it could come from a twelve year old, much less an autistic twelve year old who'd only been communicating for three years, and presumably had never done things like read novels for fun (which I consider central to my own language skills relative to my peers): "I love to flap my hands. I flap to feel my body in space. No one g…

My autistic five year old does things that you wouldn't think possible for a five year old. I've watched over his shoulder as he gets to 8192 in a game of 2048 (original rules, no "undo".) He understands exponents and logarithms. He can tell you that 9007199254740992 is 2^53, and that the base 2 logarithm of 4000000000 is between 31 and 32.

If all you knew about him was that he's 5 years old, autistic, and still hasn't figured out the toilet, you might be skeptical of the above paragraph. You'd be prone to evaluate my son based on something other than his actual capabilities.

One thing I've observed with him is that he tends to go from zero to awesome almost overnight. We had the hardest time getting him to speak, and then at around age 2 and a half he ballooned from a 10 word vocabulary to 250+ words in just over a month, and then quickly to complete sentences that were atypically advanced for his age. This sort of thing is normal for at least some subset of the autistic.

Could this have come from an "autistic twelve year old who'd only been communicating for three years"? Absolutely -- if he began communicating, and then obsessed about it the way my son obsesses about numbers. Sure, there's reason to be skeptical regarding the methodology described in one of the comments, but "this could not possibly be a child communicating" is going too far in the skeptical direction.

Re: I Have Nonverbal Autism. Here’s What I Want You to Know

#42

Post by gus_massa »

midnightmonster wrote: post #30
AaronFriel wrote: post #7

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…

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 hi…

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 . 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 are the more frequent letters and that makes the typing easier.

Re: I Have Nonverbal Autism. Here’s What I Want You to Know

#43

Post by muddyrivers »

autism_parent wrote: post #26

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 Engl…

I am an autism parent as well. If it doesn't violate your and your child's privacy, could you tell me at what age your child became prompt-independent?

Re: I Have Nonverbal Autism. Here’s What I Want You to Know

#44

Post by uf »

fecak wrote: post #28

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…

Having Asperger myself and having watched alot of parents I'd like to share a thought.

To me the biggest problem seems to be connecting to the outside world. I've also observed children having trouble with this, as it seems they weren't able to filter relevant stimuli to react on: "Do they speak to me? I don't know.. So I'll continue to wait."

This is a pattern I'm using as well.

However, things I do understand are people reaching out to me very directly with very clear emotions.

Difficult and wrong as it may be, I'd suggest including your daughter directly in conversation as often as possible. She may not understand words, but quite possibly she does understand emotion.

This may at least ease the disconnection she's already observing.

Re: I Have Nonverbal Autism. Here’s What I Want You to Know

#45

Post by autism_parent »

muddyrivers wrote: post #43
autism_parent wrote: post #26

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 Engl…

I am an autism parent as well. If it doesn't violate your and your child's privacy, could you tell me at what age your child became prompt-independent?

He developed normally until about 18 months. He was even picking up things fast - memorized a picture book in one sitting for example. Then over the next 2 years, we started noticing his speech was delayed but he seemed fine otherwise (affectionate and connected). At that point we were concerned but not alarmed.

His big regression came around 5, we seemed to completely lose him. He lost skills and seemed to lose the connection he had.

We started him on ABA but we stopped it soon because we were concerned about the animal-like training it involved.

The next few years were spent in various types of interventions but without any real breakthrough. Then we started to notice he could pick answers for multiple choice questions, often showing a surprising level of understanding.

For example, noticing that he was hanging around when the TV was on (not really watching, simply hanging around) I remember giving him a quiz: "Barack Obama is a a) Republican b) Democrat c) Libertarian d) Independent" and he would pick the answer. Thinking may be it was a fluke, I would try with Bush, McCain, Clinton and so on, and he would get each of them. This was unexpected because the way he looked and acted, there was no hint he could have known any of these things.

That was the point at which we discovered the prompting method. Initially I was personally skeptical if he really was learning, but by now, given the way he has passed externally-administered tests by people who have no connection to him or us, it is very clear that he was learning all along.

He can still be very prompt dependent in a social setting, but give him a paper and pencil test, he tends to do extremely well. He still has huge issues (OCD, repetitive and random behaviors) and he has practically no social skills to speak of, but he does seem to show a remarkable degree of intelligence.

Re: I Have Nonverbal Autism. Here’s What I Want You to Know

#46

Post by fecak »

uf wrote: post #44
fecak wrote: post #28

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…

Having Asperger myself and having watched alot of parents I'd like to share a thought. To me the biggest problem seems to be connecting to the outside world. I've also observed children having trouble with this, as it seems they weren't able to filter relevant stimuli to react on: "Do they speak to me? I don't know.. So I'll continue to wait." This is a pattern I'm using as well. However, things I do understand are p…

Thanks for sharing your experience, and our experience is similar regarding being direct and clear when we need to communicate something important. This includes removing any distractions from the environment. She does seem to understand emotion sometimes, but inappropriate reactions make it hard to tell.

As for examples, she consistently laughs when babies cry, and often when we scold her for any 'dangerous' type behaviors she also laughs. There are times when she will respond appropriately.

We are adjusting to include her more in conversation, asking her to indicate preferences, etc.

Re: I Have Nonverbal Autism. Here’s What I Want You to Know

#47

Post by bitwize »

wersplectior wrote: post #20

>'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 coercin…

Some of us are hyper-capable at making educated guesses about people's intentions and even ulterior motives; where we suck is in generating appropriate responses.

Autistic "social skills", like everything else about us, exist on a wide-ass spectrum.

Re: I Have Nonverbal Autism. Here’s What I Want You to Know

#48

Post by muddyrivers »

autism_parent wrote: post #45
muddyrivers wrote: post #43

Earlier quoted context omitted.

I am an autism parent as well. If it doesn't violate your and your child's privacy, could you tell me at what age your child became prompt-independent?

He developed normally until about 18 months. He was even picking up things fast - memorized a picture book in one sitting for example. Then over the next 2 years, we started noticing his speech was delayed but he seemed fine otherwise (affectionate and connected). At that point we were concerned but not alarmed. His big regression came around 5, we seemed to completely lose him. He lost skills and seemed to lose the…

Thank you very much. It is very similar to my son's case, with remarkable intelligence and few social skills.

Re: I Have Nonverbal Autism. Here’s What I Want You to Know

#49

Post by appleflaxen »

AaronFriel wrote: post #7

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…

Thank you for expressing this, especially in a caring and respectful way.

Re: I Have Nonverbal Autism. Here’s What I Want You to Know

#50

Post by hrnnnnnn »

lambda wrote: post #8
hrnnnnnn wrote: post #2

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

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.wikipedi…

I'd never heard of this, will be a bit more sceptical in future.
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