Alternative Communication for Autistic People

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I've been doing a project on alternative/augmentative communication strategies for autistic people. I've always been interested in it; so when my biomedical engineering profs wanted me to pick a technology and study it, I jumped at the chance. (Don't you love it when you get to do projects on things that already interest you?) I know, of course, that AAC involves both high-tech and low-tech stuff; everything from "simple" ASL to computerized text to speech; so I'll have to focus on the more high-tech devices. There should be more than enough to learn there, though.

Anyway, I don't use alternative communication, unless you count things like getting shut down and shoving a driver's license at the "assisted transportation" driver so he knows who I am. I almost never lose access to fluent speech, and when I do, it's only for seconds or minutes, or in the form of gaps in sentences when I'm having trouble with concept-to-word translation. I don't even have any knowledge of what it's like to be non-verbal, since I learned to speak on time. So I need some insight on this.

There are autistic people who don't have reliable speech, or don't have it at all, and for those people, AAC is very important. The basic purpose of AAC is to let somebody express their ideas in as flexible a manner as possible. It's a huge thing where autistic rights are concerned, because if you can't express your decisions, then people can very easily ignore them and take away your right to choose for yourself and live your own life.

IMO, the single most important part of educating an autistic person is teaching communication, for that very reason. If you can't do something for yourself, then somebody can help you do it. But if you can't communicate, nobody can do that for you. (The other part of the autistic-rights problem, of course, is getting people to listen when you do communicate, instead of calling it "behavior" or "manipulation" and making decisions for you anyway.)

I'm wondering if any of you have also been interested in this--whether you use some form of AAC (writing? PECS? sign? symbol? text-to-speech?), or whether you're studying it because it interests you like it interests me. Especially, if you've found any good resources for learning about this, please pass them on to me. I'd also like to hear opinions, experiences... anything that might give me ideas for this project... especially since it seems the professor has never had anyone do a project on AAC equiment before (he's very much into implantable devices, not much into rehab tech)! I might get the chance to educate him a little.

What are the factors to consider when choosing AAC? How do you learn to use it? How do you make it easier for other people to understand you when you use it?

Callista,
it sounds like an awesome project!


am use makaton [its easier to learn sign language,and was designed for people with learning difficulties],ASL [BSL over here] is better if are able to learn it as it has a lot more language available to use,but its very complicated due to more movements involved.

Also use text to speech on a laptop,probably more than makaton sometimes if need to get more out than what makaton can do.
the problem am have with TTS is people will always stick their head around the screen to see what are typing and verbally try and fill in what am saying,they dont do it to people who speak fully so why to someone who uses TTS? why no equal respect? even the GP does it.

am recommend having a try of it-some of them are very basic [think it was called text2speech,still ok],some are just crap [espeak in linux,like on helium,very fast speech to ,it recognises more words than JTalk,is command line based and doesnt do very long sentances without breaking] but JTalk beats them all:
http://www.thiswayoflife.org/jtalk/index.html not been updated so takes a bit of messing about getting it running on vista and its a bit buggy on vista [but it works fully,and it's the best TTS available].

When all else fails or dont understand something am trying to get out,will also communicate through behavior,usually through headbanging, self injury and what staff call 'incidents'.
Am have part of the day each day usually which is verbal,but is echolalic speech.


Callista,
Would like the makaton manuals to learn up on?
am have the full manual,but am not at home until at least next week,as theyve got decorators in,would then be able to scan them onto dads scanner.

If you want it to work, you need a language which is a lot quicker to write down than read out - a bit like Entish. In that respect you encourage visual communication, whilst ensuring conversations themselves are more to the point - removing the banal elements and social complexity that goes with it. Also a logical structure and set of rules would be very nice...

I am not an AAC user, but I did an internship as a speech pathology student at a school for kids with autism, and most of my kids used AAC, as very few had any speech. Most of the kids used low-tech PECs pictures or digital photographs of real items in their environment, in combination with a few signs, but I did have a few kids with high-tech devices. One of them used a "Cheaptalk," which is a device with 8 static buttons that you slide a printed board over. You then record a message for each of the buttons so that they speak the message when the kid hits them. At the time I left the school, we were only using 4 of the buttons, since the girl was having a difficult time discriminating between them.

The other two kids had Dynavox devices, which were much more complex, with dynamic screens and a much greater vocabulary. One boy, who was 13, had hundreds of vocabulary words programmed in. The other boy was 11 and had just been introduced to his device while I was there, and so his was simpler.

As for things to consider when introducing a high-tech AAC device (I realize you were asking about the point of view of the consumer, but here is a therapist's view):

1) The person's level of "symbolic representation": can the person see a photograph of a clock and understand that it represents a clock? How about simple pictures or a line drawing of an object? Can they recognize any written words?

2) How large the field should be: can the person discriminate between 8, 12, or more pictures on a board, or should there be no more than 2 or 4?

3) Dynamic or static displays- Can the person use a more complex device with menus and changing screens, or would a static display with fixed buttons work better?

4) The person's level of linguistic ability: are they at the level of choosing single pictures of things they want, or can they compose whole sentences? Do they have a basic understanding of categories? (e.g. fruits, people).

5) What does the person need to and want to communicate during a day- in other words, what vocabulary should you include?- this is often the toughest, since you can't read someone's mind. Unless you have someone who is advanced enough to program their own device, or indicate desired vocabulary through other means, you have to guess. Remember, for many AAC users, they can't say anything with their device that you didn't put there. And if they are dependent on AAC to communicate, they may not be able to tell you what words they want on there. So you basically have to guess based on working with the person.

6) You also have to consider how the person will access the device (pressing buttons with a finger, using a head-pointer, using a single switch while the device scans buttons, etc.), though this is more of a concern for people with physical disabilities rather than autism only.

I'm sure there is plenty more that I am missing, but that is just a list off the top of my head.

For an example of how the programming is related to the person's needs, I'll describe the types of vocabulary and menus on each of the high-tech units I programmed:

Cheap-Talk: This girl was very low-functioning, could not sign independently, or use PECS or any kind of AAC system without significant assistance (she was 12). Her device had very basic items on it that were of high interest to her that she could request- her Princess books, Bob the Builder books, music, cereal, etc. We often only worked with 2 buttons at a time, one with an item that was desirable, and one that was undesirable, in an attempt to teach her to discriminate the pictures. We used digital photographs rather than PECS pictures, because her level of symbolic representation was pretty low, and she was unable to identify desired items even in digital photographs. As far as we could tell, she had almost no receptive language ability and she was working at the level of cause and effect (i.e. I press this button and this happens).

Less-complex Dynavox: This device was for an 11 year old boy who had decent receptive language capabilities (enough to understand basic information and questions), but no speech. He was obsessed with video games and James Bond, so we programmed in all sorts of James Bond related information. We also photographed activities that he was engaged in, and set them up in story form, so that he could tell a story about what he did (his favorite was the time we made pizza- he told that story a lot). He was not at the point of producing sentences, so each button was programmed with a full message (e.g., "I want...X", "I made pizza"). Most of the pictures were PECS, but the video games and other idiosyncratic vocabulary were digital photos I had taken with a camera or downloaded from the Internet. I think there were about 12 buttons to a screen.

More-complex Dynavox: This was for a 13 year old boy who again had no speech, but also had receptive language good enough to understand basic information (although he was still severely delayed- he didn't know the difference between who/what/where for example) His device was much more complex, with no preprogrammed sentences. He must have had over 50 buttons to a screen- I'm not sure how many exactly. His home screen was filled with categories rather than vocab words, categories like "people," "places," "verbs," etc. He couldn't form more complex sentences independently, but he was able to independently ask for things using basic, complete sentences. This boy could also read most simple words, so he did not need to rely on the pictures to identify items.

So as you can see, although all three children were ages 11-13, their communication needs and abilities, and therefore their devices, were very different. I hope this was helpful, even though it was from the point of view of a therapist rather than a consumer.

i have to agree with kingdomofrats excellent project to do!

i have my mini pecs book i use but i mostly rely on sign language, ASL, it is so very important that i have my pecs books with me at all times, but my ASL is what gets me through my day. what helped me learn ASL the most is a lot of reptition, ASL is very visual and since im so visual its very easy for me, but i use basic signs more. Also parents have used PECS with sign language pictures to teach actual sign language which ive also heard helps. It took me almost 5 years of learning ASL to be able to understand it fully and use it right. I remember at first they had to sit next to me and show me how they do it over and over, then grab my hands make me do it over and over, which was only getting me to sign wasn't puttin the sign to a particular object, for example signing help, i wouldnt respond just sit there needing help but not doing anything about it, but they would come up to me and look at me and say do u need help and shake their hand yes, until i either copy the hand shaking of yes or not respond, if i dont respond they will point to whats going on my paper and say wrong, then ask me again do u need help, then sign the sign yes over and over until i signed it with them, then they would sign help over and over until i repeat it, bring my hands to show me how to do help to refer it to what im doing, then wait until i put two and two together, if i didnt they would point and say thats wrong, do u need something and sign help over and over, if i sign yes, they would then again point to the paper and say wrong, and say do u need something, and they would sign help over and over, if i wasnt still getting it they would remake that scenerio with another classmate and then sign with the whole class the sign help, then come back to me and do it all over again until i signed help. It was a whole long process. The best thing about sign language though u dont need to sign a complete sentence to get what u need across, sign eat for food or hungry or could mean needing something in mouth like oral therapy toy. Stuff like that. I use a lot of basic signs to get through my day especially if im out anywhere, signs like more, eat, drink, play, i made up my own signs lol, like home signs basically everybody knows what i mean when i sign it but its not a real sign for ASL.

I have never had AAC, but used one before with other kids, i didnt like it, feel more robotic, but it helps so many kids that its very beneficial, one AAC device you can record another person voice which was so much easier then a robotic voice if u ask me.

i'm also going to say i'm sorta like kingdomofrats because i communicate through a lot of behavior like her as well.

anyways good luck with ur project, lemme know how it all goes!

_________________
Being Normal Is Vastly Overrated

It's all too hard for me in person. I lose everything but the bare minimum of pointing and fingers in the air amounting to numbers; even typing/writing is out.

I don't interact with people, so it's no bother to me. However, you'll be surprised how far you can get by just pointing and using your fingers for numbers.

I suppose it'd be handy for people who can stand being around others and who want to interact with people (alternative communication that is).

Kingdomofrats--the manual would be useful, but if it's hugely long (like more than ten pages) please don't! I've scanned large amounts of text before and hated having to do it and I wouldn't want to make anybody else do it.

So what I'm getting here is a high need for flexibility in design, most of all--people with really different needs, to the point that any given device has to be just about designed specifically for that person. This is of course rather expensive, so I guess devices that can be modified to some extent are most popular?... for example, modified to show pictures versus symbols, two versus ten, a couple of buttons versus a full keyboard, touchscreen versus raised buttons or keys... I wonder if the ideal design would be one that could be physically put together by a speech therapist from a wide array of parts, to match a wide variety of specifications. It would have to be relatively simple assembly, though. Advantage would be the ability to change the device as you learned more. Disadvantage would probably be a more fragile design, which is important especially with kids; but I guess you could put the whole thing inside a tough case that could stand up to being dropped or carried in a backpack or whatever... The price issue could be a problem if you wanted a simpler device, though it would be an advantage if you wanted a complex one because the parts themselves would be mass produced and interchangeable. Anything like that out there?

Maybe I should do a section on low-tech versus high-tech; because often times high-tech isn't better; physical pictures to point to and hand to somebody can be more concrete (I think?).

I found there's actually a bunch of people studying AAC, to the point that there's a journal just for that. Problem: There's not much research for AAC and autism; everyone seems to be focusing on CP and other primarily physical impairments.

Callista,
no idea how many pages it has,but it wouldn't be a problem!
like doing the same task,have scanned/uploaded NAS catolgues on here before as well,could possibly bit torrent the makaton stuff as well for others if it isnt difficult to do bit torrent stuff.

Callista, I do not use any form of AAC but I often feel like my mind processes ideas quicker than I can express them verbally. The ideas are of such complexity that verbalizing them is difficult. In other words, there is a chasm between my intellectual ability and my ability to communicate the ideas flowing through my brain. I have great ideas but I can't get them out!!

When I write, I can slow down and express my ideas in their full complexity. It is a very slow process, I tend to write horribly, make mistakes, and then I have to go over my writing, analyze it and make corrections.

Of course anyone who is reasonably literate can express ideas better in writing than talking, but with me it's a bigger issue.

I used to write letters and hand them to people when I wanted to express something to them, that is, until I realized it was inappropriate to do this.