Autistic kids communicating online

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Is it common for autistic kids to communicate with their parents online by typing their thoughts? Most of them are non-verbal or have some sort of speech problem, so I was wondering if its common for them to type out what they want, feel, expect on microsoft word. For example, take this Carly Fleischman. She has autism, but communicates through typing.

http://www.youtube.com/watch?v=34xoYwLNpvw

Actually, most autistic kids aren't nonverbal. The Asperger's subgroup learns to speak on time, as do many of those with PDD-NOS and a good portion of the classic autistics as well. Then of those with significant speech delays at age 5, about 80-90% are speaking to some degree by age 9.

Had to correct that--it's a common idea that autistic people are mostly nonverbal, when it's the other way around; most of us can talk, though it's common for an autistic person to be slower in learning. We all share some kind of communication difficulty, though, whether that's understanding faces or tone of voice, holding a conversation, initiating social interaction, using figurative language, or generating/comprehending language quickly enough to keep up in a conversation.

Anyways, to answer your question: I wouldn't be surprised if it is indeed common for children and parents to use text to communicate. As a kid, I often wrote notes to my parents, and once I learned to type, I typed them. I can communicate in writing better than I can through speech, and I'm not even one of the speech-delayed autistics (I was in the "non-speech-delayed classic autism" group as a child, and am in the PDD-NOS group now).

It's not just the Internet, though. Also, text messages, written notes, e-mail, and more formal communication systems such as PECS (word-and-picture cards) and word-based communication devices. I know of at least one kid who's about five years old, struggles with producing words on-demand, and will resort to typing to get his point across to his mom, who holds him on her lap and redirects his attention to the keyboard when necessary. His spelling is atrocious (after all, he's five), but when he can't get a word from brain to mouth, he often finds it pretty easy to get it from brain to fingers. Often times he will be able to say the words out loud after he types them. So not only can text be a way to communicate with written words; it can be a bridge to using spoken words as well.

Text messaging? I believe its pretty common for those with autism to have poor motor skills to text message well enough. As far as your input, thank you very much.

I'm not sure if it's what you mean, but I talk to my mom occasionally through e-mail, as it's usually much easier to communicate through text than talking. We talk primarily through text messages.

Poor motor skills are nowhere near universal. I actually have very good fine-motor skills. I use an old-style PDA and a stylus to take notes and keep a calendar. It's easier for me than a touch screen; I hate hate hate touch screens--without tactile feedback, I get pretty frustrated. Someday soon I expect to have enough money for a smartphone so I can carry just a smartphone rather than a PDA and a cell phone--hopefully I'll be able to find one with a proper keypad rather than a touch screen.

Yeah, from what I have read here, I think that the "poor motor skills" of those on the spectrum mostly consist of slight differences in posture, and the tendency to trip or bump into things on occasion (and this is how it is for me as well). I think most of us can probably type and text easily.

I definitely prefer to communicate through writing, and if I have a question for my dad, I am about as likely to send him an email as I am to ask him in person, even though we live in the same house and are both home pretty much 24/7.

Yes don't get mixed up between gross and fine motor skills, my fine motor skills are great but my gross are poor, eg: I have good hand writing but I'm bad at sports.

Anyhoo i think communicating with a kayboard which converts words to speech is something all non verbal autistic kids should have.

I'm fine with talking. I don't think I even started learning late, although I'd have to ask my parents to be sure. I've been in plays, and even did really well in my high school's rendition of The Crucible (we had an awesome director, though we probably shaved a few weeks off her life with all the grief we gave her). I could probably be an orator if I wanted to. And I much prefer chat or texting to in-person communication. I'm just much better at it. It might just be because 90% of my debate experience is online.

Well... yes and no. A keyboard isn't always the best option. Remember, written words are symbolic communication too; and it's not that unusual for an autistic kid to have serious problems with symbols, to the point that it takes him a while to figure out that the photos on his PECS cards are representative of the objects in them. Literacy is definitely possible for many non-verbal kids, especially those who have auditory issues that make listening to and producing speech a cognitively resource-intensive task. It isn't necessary for someone to learn to speak before learning to read. But that's not a universal possibility--not every non-verbal autistic is good at learning to read. I do think the opportunity to learn about reading should be presented to all autistic people, because you never know who is going to turn out to have a talent for it, however impaired he is in other areas. But there should be other communication options, too. Flexibility is really the key. Depending on what he is good at, a child might take to sign language, picture exchange, a symbolic language like Minspeak or Blissymbols, a menu-based communication device, gestures, or any combination of them. The really important thing is that you shouldn't assume that a child can't learn to communicate beyond just his behavior. Failing at one thing doesn't mean that all the other methods won't work either. Communication is the one truly important skill for autistics--you can have other people do anything else for you; but you can't have anybody speak for you.

I'd have to guess that it would be far more comfortable for autistic and AS kids to type/text/write for communication, rather than to speak in person or on the phone. I'm 44, so there were no electronic written communications besides teletype and non-general public forms of such, when I was a boy... But I always preferred writing letters and mailing them, over calling people. That goes back as early as I was able to write letters; approximately age 7. Today, I still MUCH prefer writing eMails or texting over calling. I will forestall acting on a business matter sometimes, if the only option to act is a phone call. When a telephone or a door bell rings, it's about as alarming as a tornado siren. I feel invaded, nailed, plastered to the wall, and worse. With an eMail or text, however, I can review what I am saying BEFORE I say it, and thus avoid my size 15E foot in my mouth, which is so often the case with a spoken situation. I even text my wife, rather than call her during the day. It's just so much more comfortable for me.

Charles

Poor motor skills are also not always as simple as coordination issues. Coordination issues are one aspect of motor skills. I have the ability to touch type at an excellent level, despite having a serious movement disorder. This is because not all movement disorders affect coordination.

My particular movement disorder means that if a movement is triggered by something else (an object, an event, the exact right thought, whatever), then it may be executed perfectly, even above average, but if a movement is not triggered then it's going to be uncomfortable and clumsy at best and impossible at worst. I actually got tested at MIT and they found that even when other people casually observing cannot see a difficulty in movement, my voluntary non-triggered movements raise my galvanic skin response (a test of physiological stress levels) considerably, showing that it's quite difficult for me. I have difficulties with voluntary non-triggered initiating movements, stopping movements, switching movements, continuing movements, and combining movements. My body is usually very still (or doing non-voluntary "stereotyped movements") other than the parts of me that are moving, for that reason. Sometimes it can be eerily still, to other people, and that's one of the ways they pick up on the fact that I'm not "normal". This movement disorder is classed in the parkinson-like category. Real Parkinson's can cause similar problems -- a person can be completely frozen, but if presented with stairs they can run up them perfectly, then they freeze at the top. (Same with some related disorders.)

An autistic man with the same movement disorder as me (it's related to autism but fairly rare... and yet I see elements of it in many autistic people who don't have the full-blown condition or were born this way instead of progressing to it) was in a wheelchair for years and years. Then one day his father, who was quite elderly, fell out of his own wheelchair. The autistic man jumped up, grabbed his father, put him back in the wheelchair, and went back to freezing. That's a perfect example of how it's not about coordination, it's about a deeper level of movement.

Movement issues at this "deeper level" do seem to exist in a number of autistic people even if they don't have this particular movement disorder. Here's a page describing the similarities between some autistic people's movement issues, and the movement issues experienced by people with more well-known movement disorders such as Parkinson's, catatonia, and Tourette's:

http://www.iidc.indiana.edu/?pageId=468

I was one of those autistic children well-known for being good at certain kinds of movement. I could climb trees, balance on fences and other precarious things, and I never once fell. That sort of thing is commonly reported in the autism literature, as is fine motor dexterity of the sort that allows me to touch-type faster than most people can. And yet I could be extremely clumsy in situations where the physical world was not triggering the movements. I did terrible at school on tests of dexterity, because nothing in the situation was a trigger for movement and many things in the situation were a signal to my brain to stop moving (the ones we did involved having to run past lines on the ground and turn around and go back while also ducking to pick things up... none of that was "natural" part of the situation, so nothing triggered anything for me, so I went painfully slowly at times). And that was before my movement disorder began to progress. Many autistic people have that level of trouble without it ever progressing further, and some even are born with a severe level of trouble in that area and either stay the same or get better with age. It's only those of us where it suddenly gets a lot worse, or progresses, or has a pattern of relapse and remission, that get diagnosed with the movement disorder I have, but many autistic people do have similar movement issues that just don't happen to follow that pattern of severity changing.

So even if autistic people have good enough fine motor skills to text and the like, it doesn't mean they don't have movement issues. I know an autistic boy who has no speech that anyone can understand, and who even has trouble typing on a regular keyboard, but give him an iPod Touch and he can go to the same speed I can on it (which is fast).

I'm diagnosed with autism, and I used to speak, but now can't, at least not in a way that means anything. Words occasionally pop out of my mouth (usually either tics or triggered by some event) but they're meaningless, delayed echolalia mostly, so I'm considered nonverbal now even though I wasn't considered it before. (When I had more speech, though, it was only partially communicative, as was my initial typing. Long story. When I type, I still have to work very hard to avoid the wrong-but-plausible words from coming out, and when they do come out it creates a mess because some people think since I can write well then I can't have language problems... the same kind of thinking that makes it seem like if a person has good coordination they have no motor skills problems. Also a lot of the time I can't write or understand language at all, but that's a whole nother story.)

So yes, I'm an autistic person communicating on the Internet. Nothing strange about that, the online autistic community was founded by people diagnosed with autism after all. That's because it was founded at a time when Asperger's had barely made it to the DSM. So practically everyone involved had an autism diagnosis. Most could speak but some couldn't -- just like autistic people in general. Some couldn't type, either, but participated in offline events and enjoyed them. It's not at all unusual for people diagnosed with autism to communicate on the Internet, we do it all the time, there's plenty of people here even (although some have been run off by the hostility some people have to those of us with certain problems... I'm just stubborn because I've been through enough that I can stick around through nearly anything, although I do sometimes take breaks because it can get unpleasant here for people like me when that hostility to people who can't do certain things gets stirred up).

My dad's pushing 70, and what he did was learn Morse code. Not an option for everyone, but he really got into radio and I suspect this sort of thing was part of it. Interestingly, some communication devices can be accessed by Morse code. I used to know it but I got lazy.

Typing is a good tool for some and for those with a wide range of challenges.

That clip of Carly fills me with hope but also a deep abiding fear. Just think. If a significant portion of non-verbal autistic kids have been written off as non-cognizant. Live active intelligent minds locked in a body that won't allow them to express themselves. That is horrifying.

All autistic kids should be assumed to be intelligent thinking beings first. Providing a keyboard and some motivation to use it is one step that could make a huge difference in some lives. Yes, many autistics have trouble with symbol recognition. I know when I start declining into a meltdown or sensory overload, words run together, cease to mean anything. There has to be a way. Everyone is so moved by the story of Helen Keller. Did Anne Sullivan give up on her?

Yes, try the keyboard and if that doesn't work, move on and try something else. But ALWAYS assume the best - that the autistic man or woman in front of you is a thinking feeling intelligent adult first. Every time I see a kid or an autistic adult with out of control stimming I can feel the frustration just vibrating off of them. They want to be heard. People need to start listening in whatever way they can.

I'm not sure "locked in a body" is really the right word for it... I mean, it's not like paralysis where you can't get information to and from your body. Well, not usually. Lots of autistics do have issues initiating, controlling, and stopping movements.

It's more like you're missing the skills that allow you to communicate--like how after a stroke, a person might have damaged the part of his brain that lets him understand what words are. Maybe some autistic kids develop in ways that make it hard to understand what words are and how to use them. Or they have a cognitive problem with understanding that symbols can stand for things. Or they see language as "the noises you are supposed to make in this situation" but don't get the idea that you can use it to get ideas from in your head to somebody else's head.

It's definitely frustrating not to be able to communicate when you want to. Probably all of us have had the experience of trying to get words out and not managing it, or having a problem and not getting help for it because you don't know how to ask.

The "trapped in a body" idea kind of implies that the autistic person "inside" is just like other autistic people, or maybe just like non-autistic people even; only they're trapped inside where they can't communicate. But... I don't think that's the case. People who don't talk for some reason or another have a different brain and a different experience of life from those who can talk sometimes or talk fluently. If they didn't have a different brain, they would be able to talk. So... it's not like this is a regular autistic person inside a non-verbal body. It's a non-verbal autistic person in their own body. I do strongly agree with the idea that communication is possible for everyone, and that not being able to speak is not an automatic indicator that other skills are at a similarly impaired level. Often times those other skills can be used to sneak around the lack of speech and allow communication anyway. Writing off people who can't speak as not being able to communicate is a grave error.

This was the only point I was trying to make... having intelligent thoughts but a body, for whatever reason, that won't allow you to communicate them. I hope the 'trapped' analogy wasn't received as negatively as I now realize it sounds.

Only suggesting that assuming there is a mind inside that may understand and want to communicate should be the first, default approach instead of the opposite - assuming there is a non functional mind not worth reaching. This, quite often, is the assumption. I think it is a very 'outside-the-box' moment... the community that services those with autism need to tap into that creativity and find new ways of reaching those that can be reached - and assuming that ALL can be. The alternative is too horrifying to contemplate.

I guess I... don't understand the surprise?

(Note that I'm not trying to pick on anyone with this response, so please don't take it personally.)

I look at autistic people -- any autistic people -- and I see someone there. I see someone who either has a mind capable of fairly standard thought, or a mind capable only of other kinds of thought (that to most people aren't even considered thought... meaning the whole 'sensing' thing), but I never get any impression whatsoever that there's nobody there, or nobody intelligent there, or whatever it is people mean.

I see the same thing in people with dementia. I can sense the gears turning in their heads. I can sense their personality. I can sense a whole lot about a person. And so I don't see them the way most people do. (There's now evidence that people with Alzheimer's retain understanding of the world a lot longer than people think they do... no surprise to me.)

I also don't understand why it's worse to be 'intelligent' and unable to communicate in words, than it is to have a very sensing-based way of interacting with the world (or some other very nonstandard thought process that is so nonstandard that most people don't consider it having a mind at all) and unable to communicate in words.

But I also just... can't. And I mean can't, I've tried. Can't find the way of looking at people that would allow me to assume that they have nothing much to communicate. Certainly there are people who can't fathom communication, but that's not the same as having nothing to say. And I'm not acting from ideology here or something. I literally cannot perceive people that way. I instinctively see who they are and I don't understand how it is hidden from people who assume there's "nobody there". (I also know that I've spent my entire adult life and part of my adolescence -- at minimum -- appearing to people sometimes or always as if I "wasn't there". I was molested once when I couldn't find my body in a mental institution, and everyone assumed I didn't know what had happened, to the point that nobody even reported it even though it happened in a roomful of people. During a hospitalization a few years ago a medical professional declared me to "have the cognitive capacity of an infant". I don't understand it. I just don't. I know I look different but I don't understand the impulse to see people like me or others as looking empty in some way of the kind of things that would make it matter if I couldn't communicate in words.)

What is it that people think is (or isn't) happening inside an autistic person when they don't see us as intelligent enough for it to be a horrible/scary thing to not be able to communicate? This isn't a rhetorical question, I'm actually really curious. I have given talks to parents and seriously affected them, a common comment is "You look just like my child, but until now I didn't think my child was thinking in there." But I don't know what that means. I've tried for years to understand, and I can't, because every time I look at anyone I see someone in there, and I'm supposed to be less socially aware than most people.