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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

#31

Post by amyjess »

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…

> 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.

I used to work for a startup that (among other things) made very innovative teaching tools for autistic children. We worked with actual autism experts who run autism treatment centers, and we designed lessons and a curriculum for our product to teach basic social skills to autistic kids (by basic, I'm talking things like "when you greet someone: smile, nod, say hello").

Yes, I'm being vague about what the product actually is because I don't want to 100% tie this account to my real-life identity, but I can tell you that it's unique and got a lot of buzz.

I had a lot of issues with the company's management (for both technical and non-technical reasons), which is why I quit, but one of the reasons I stayed as long as I did was because I believed in the idea of the product, and I felt that it was going to truly change people's lives for the better. It really made me feel the warm fuzzies when a friend of mine (well, more of a friend of a friend, but we knew each other) who has two autistic children one day sent me a message on Facebook saying "I just noticed that you work for [company]!", and she was super-excited to realize that this person she knows works for a company that she follows in the news (and we were a tiny startup, so it's not like I worked for a big megacorp or anything).

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

#32

Post by astrobe_ »

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…

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

It is certainly not the kids that are dismissed, but "silver bullet" methods like F/C. If autism is really like a lock-in syndrome, being fully intelligent and transformed into a puppet (as the documentary "Prisoners of silence" linked in this thread suggests) must be horrible.

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

#33

Post by mapt »

dghf wrote: post #25
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…

> There are recursive layers of social intrigue in this paragraph that people with autism would have a great deal of trouble understanding, much less writing That's a bit sweeping. Many doubtless would; but there are autistic people who are capable of self-reflection. A somewhat exceptional example: Temple Grandin, PhD, who has extrapolated from her experience of having autism, specifically the sense of constantly be…

Absolutely. If you've met one autistic person you've met one autistic person. Basically any reference to autism has the problem of overgeneralizing, especially now that we expanded the spectrum to cover several percent of the population, and started using "autism" for the whole spectrum colloquially instead of a particular subset of the spectrum.

But even so - we do on occasion need to talk about autism generically. Referring to a classical profile[1] of autistic symptoms, an abstract-concept-of-autism, is simply a necessary shorthand, because the changes in perception & diagnosis of autism have stolen the language I was taught growing up to describe and classify, and sprayed them over a broad swath of behavioral and cognitive problems. It's also quite a bit more appropriate to use the stereotype (while remaining conscious that it's a stereotype, usually correct but not always) when referring specifically to low-functioning minimally-verbal autistics, I suspect.

[1] http://en.wikipedia.org/wiki/Theory_of_mind#Autism

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

#34

Post by wersplectior »

dghf wrote: post #22
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…

> 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 cogni…

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).

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

#35

Post by wersplectior »

emodendroket wrote: post #27
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…

> Also sceptical that coercing people to behave in socially acceptable ways is necessary or desirable. Well that is the only way they could possibly live independently.

No, there are spontaneous and unexplained 'cures' which I'm guessing occur where people have been given the space and time to develop autonomously, without excessive interference. This applies proportionally to ordinary children to.

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

#36

Post by autism_parent »

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…

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.

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

#37

Post by autism_parent »

fecak wrote: post #29
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…

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 ot…

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.

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

#38

Post by fecak »

autism_parent wrote: post #36
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…

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…

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.

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

#40

Post by 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...

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..

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