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Novac96
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21 May 2016, 2:28 pm

I happen to have a nonverbal autistic relative that one would readily dismiss as being "low-functioning," yet through his behavior, no matter or not it is positive or negative, he is obviously attempting to communicate with those around him. He was diagnosed formally with an intellectual disability about five years after he was diagnosed with autism at the age of three years and one-and-a half months old.

His parents, unfortunately, have tried every means that they could to "cure" him: his mother, having read books in the likes of those by Jenny McCarthy and Karyn Seroussi's Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery, attempted to "cure" him via the GFCF diet, which did not help in his aggression or acquisition of independent skills; he had done perhaps thousands of hours of ABA as a toddler and young child, even having gone to an ABA preschool and doing it after lessons at a special-ed unit in a mainstream public school for his first few years; and he has even been institutionalized twice at two different children's psychiatric hospitals who have monitored his behaviors-- and yet their suggestions, in the long run, have not served him well. He has taken many medications over the years, ranging from anti-psychotics, to ADHD pills, to insomnia pills, to anti-depressants-- so many. In fact, had he not been taken off of a particular medication (I forget what it was called or what it was for), his liver would have shut down and he would have died as a result.

Many of my family members are desperate-- especially his parents-- for him to effectively communicate his needs other than using ASL to sign for "cookie," "chip," "candy," "cr****r," and "more." I understand that there are some iPad apps out there (Proloquo2Go is one of them) that have been used as a means for many nonverbal people to communicate their needs, yet his immediate family has not tried any of such. I've been very curious about various forms of AAC for the past few months for him, now, even though I am only his cousin. Does anyone have any worthwhile suggestions or resources?


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DataB4
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21 May 2016, 2:43 pm

Wow, what a heartbreaking story!

Do you know what the family in the therapists have already tried? That's good that the ASL does some good; can you relative draw or use a picture board to point to things? What about other forms of expression or releasing of aggression, like playing/composing music, punching bags, etc.? How about learning?

I think if I couldn't express myself, I might start hitting and banging too. I think many people would; self-expression is a basic human need.



Ettina
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21 May 2016, 4:26 pm

The two best AAC apps I know of are Speak for Yourself and Cough Drop. Both of these apps have a large vocabulary available with only one or two hits for each word, and words can be hidden for a beginner and then new words opened without changing the position of already-learnt words. And both have a search function that a literate person can use to find a word they don't know the location of.

But it's not just about getting the right AAC system, but also knowing how to teach it.

First, rather than telling the user what to say and prompting them to say it with the device, the best way to teach them to use an AAC device is to use it to talk to them. Speak slowly and clearly and when you get to a certain key word, you press the button on the device. It's not a problem if you make mistakes or have trouble finding the word - that's a good learning experience for the kid too. Pick just a few words to teach first, and once the kid is using them, teach more.

The Speak for Yourself website has an awesome graphic for where to start here. Basically you start with what the person loves, and words related to that topic. It's important to put a lot of emphasis on teaching core words - the top 200-300 most frequently used words, such as 'more', 'yes', 'look', 'need', 'good', 'bad', 'not', etc - because these words give the most communication ability with a small vocabulary. Unfortunately programs like PECS tend to focus on requesting desired objects first, and the kid's vocabulary ends up looking more like a menu than a language.

And if he hits random buttons, even if you're sure he has no idea what he's saying, act like he actually said it. If he accidentally hits 'stop', stop what you're doing. If he accidentally hits 'more', give him more of whatever he just got. If he accidentally hits 'eat', give him food. Or ask him if he's hungry, or say you'd like to eat, or whatever. The first time a baby says 'mama', they're just making random sounds, but their mother gets excited and they learn that she thinks it's an important word. Same with a kid using AAC, if you treat everything they say as meaningful, soon it will be.



DataB4
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21 May 2016, 4:35 pm

Ettina, brilliant advice. :) What little experience I've had with someone using an AAC device was an adult in a completely different situation, so I wouldn't've thought of it that way.



Novac96
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21 May 2016, 8:35 pm

Ettina wrote:
The two best AAC apps I know of are Speak for Yourself and Cough Drop. Both of these apps have a large vocabulary available with only one or two hits for each word, and words can be hidden for a beginner and then new words opened without changing the position of already-learnt words. And both have a search function that a literate person can use to find a word they don't know the location of.

But it's not just about getting the right AAC system, but also knowing how to teach it.

First, rather than telling the user what to say and prompting them to say it with the device, the best way to teach them to use an AAC device is to use it to talk to them. Speak slowly and clearly and when you get to a certain key word, you press the button on the device. It's not a problem if you make mistakes or have trouble finding the word - that's a good learning experience for the kid too. Pick just a few words to teach first, and once the kid is using them, teach more.

The Speak for Yourself website has an awesome graphic for where to start here. Basically you start with what the person loves, and words related to that topic. It's important to put a lot of emphasis on teaching core words - the top 200-300 most frequently used words, such as 'more', 'yes', 'look', 'need', 'good', 'bad', 'not', etc - because these words give the most communication ability with a small vocabulary. Unfortunately programs like PECS tend to focus on requesting desired objects first, and the kid's vocabulary ends up looking more like a menu than a language.

And if he hits random buttons, even if you're sure he has no idea what he's saying, act like he actually said it. If he accidentally hits 'stop', stop what you're doing. If he accidentally hits 'more', give him more of whatever he just got. If he accidentally hits 'eat', give him food. Or ask him if he's hungry, or say you'd like to eat, or whatever. The first time a baby says 'mama', they're just making random sounds, but their mother gets excited and they learn that she thinks it's an important word. Same with a kid using AAC, if you treat everything they say as meaningful, soon it will be.


Thank you so much for your highly-informative comment. I forgot to mention in my OP, but I have in fact heard of Speak for Yourself, but I have not given it much thought. Do you personally have experience with using it with a nonverbal autistic or other disabled individual?


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