In their own words
COMMUNICATION Challenges
languaging translation by EmmaPretzel
we say “behavior is communication” a lot. because it’s true, and important.
it is also a vast, vast understatement.
because here’s the thing. communication? it’s behavior. it is, and it will continue to be, no matter how many times the powers that be try to teach us that language is a set of rules, a dictionary, a grammar-work book or a computer program. language is the way we change and move with our world, patterned and pulled through like fabric and thread.
so when we say “behavior is communication” we don’t just mean “when your kid has a meltdown, there’s a reason for it.” we mean “look at how your child moves, and where, and when. how do they move with people? how do they move alone? when are they still? if they sing and speak and pattern-repeat, what part of their
environment plays the tune they’re talking to?” READ MORE
we say “behavior is communication” a lot. because it’s true, and important.
it is also a vast, vast understatement.
because here’s the thing. communication? it’s behavior. it is, and it will continue to be, no matter how many times the powers that be try to teach us that language is a set of rules, a dictionary, a grammar-work book or a computer program. language is the way we change and move with our world, patterned and pulled through like fabric and thread.
so when we say “behavior is communication” we don’t just mean “when your kid has a meltdown, there’s a reason for it.” we mean “look at how your child moves, and where, and when. how do they move with people? how do they move alone? when are they still? if they sing and speak and pattern-repeat, what part of their
environment plays the tune they’re talking to?” READ MORE
Out of the Closet by Ido in Autismland
Every day I meet new communicators. Not babies, but kids in elementary school, teens and young adults. Their lives had been limited in one way communication for way too many years. They listened but they had no way to answer. In any case, they heard people. Many of them heard their parents moan and groan and say comments like, “I don’t know how much intelligence is there. I don’t think he understands much.” They listened to their teachers say things like, “He isn’t aware of right from wrong. He isn’t aware of his surroundings. He is oppositional today.” They listened to ABA specialists tell them, “No, try again,” “No, try again,” “No, try again,” and “High five. Good job.” They heard a world that thought they were dumb. But the world in this case was wrong.
It isn’t a lack of intelligence to be able to think but to not be able to get your body to show it. It is being trapped. If I put your hands into baseball mitts and your tongue was trapped in gooey sludge and couldn’t move right and I bombarded you with questions, I think you would agree you would have a hard time showing that you had an intact mind, especially if those baseball mitt hands moved differently to your thoughts and wishes sometimes, and everyone assumed that people with sludge tongues and baseball mitt hands were intellectually low. READ MORE
Every day I meet new communicators. Not babies, but kids in elementary school, teens and young adults. Their lives had been limited in one way communication for way too many years. They listened but they had no way to answer. In any case, they heard people. Many of them heard their parents moan and groan and say comments like, “I don’t know how much intelligence is there. I don’t think he understands much.” They listened to their teachers say things like, “He isn’t aware of right from wrong. He isn’t aware of his surroundings. He is oppositional today.” They listened to ABA specialists tell them, “No, try again,” “No, try again,” “No, try again,” and “High five. Good job.” They heard a world that thought they were dumb. But the world in this case was wrong.
It isn’t a lack of intelligence to be able to think but to not be able to get your body to show it. It is being trapped. If I put your hands into baseball mitts and your tongue was trapped in gooey sludge and couldn’t move right and I bombarded you with questions, I think you would agree you would have a hard time showing that you had an intact mind, especially if those baseball mitt hands moved differently to your thoughts and wishes sometimes, and everyone assumed that people with sludge tongues and baseball mitt hands were intellectually low. READ MORE
Typed Words, Loud Voices by Ibby Grace and Amy Sequenzia
The book is part of a larger project of acceptance, of value, and of respect for all disabled people.
The title of the book - Typed Words, Loud Voices - is intended to remind people that just because we don't speak, it does not mean we are silent. Our voices might come from a computer or through someone else's reading our words, but they are as important as the voices of everyone else. READ MORE
The book is part of a larger project of acceptance, of value, and of respect for all disabled people.
The title of the book - Typed Words, Loud Voices - is intended to remind people that just because we don't speak, it does not mean we are silent. Our voices might come from a computer or through someone else's reading our words, but they are as important as the voices of everyone else. READ MORE
THE ONE WHERE I TALK ABOUT WHY TALKING IS HARD by Musings of an Aspie
Today, I’m interrupting the sensory processing series to do something a little different. Okay, a lot different. I had originally planned to make a video blog about sensory diet to run today. What happened instead was a video about why talking is hard.
About 45 minutes into a very frustrating attempt at speaking on video, I gave up. I was ready to walk away from the process when The Scientist asked me to describe what I was feeling. Mostly I was feeling frustrated and angry with myself, but I eventually got past that and managed to talk a little about why I have so much difficulty speaking in this type of situation. READ MORE
Today, I’m interrupting the sensory processing series to do something a little different. Okay, a lot different. I had originally planned to make a video blog about sensory diet to run today. What happened instead was a video about why talking is hard.
About 45 minutes into a very frustrating attempt at speaking on video, I gave up. I was ready to walk away from the process when The Scientist asked me to describe what I was feeling. Mostly I was feeling frustrated and angry with myself, but I eventually got past that and managed to talk a little about why I have so much difficulty speaking in this type of situation. READ MORE
Communication Variations
SOMA - Rapid Prompting Method. (Emma's Hope Book)
Computers/Ipads
AAC by 18 months by Uncommon Sense
When people ask when we started using AAC with Maya, I'm as honest as I can be (because really, it's hard to remember). I know we were doing some picture card stuff (and signing) before we got an iPad. I know we got the iPad when she was 2.5 years old (only 5 or 6 months after its release, so we couldn't have moved much faster on that), and we started using a communication app immediately. Over the course of the following year (2.5-3.5 years old) we did a mish-mash of that app (which had turned out to be less than ideal), the Word Book, a trial of another device, and probably some things that I'm forgetting. Finally, at 3.5 years old, we found the Speak for Yourself app and ran (fast) with it. (This video shows our communication highlights from 2 yrs old to 5 years old. )
So, at 2.5 years old we were experimenting and practicing and encouraging and trying to figure out a system that could work . . . and at 3.5 years old we found the system that could work (and we literally couldn't have found it sooner---I think we downloaded the app only two weeks after it was put on the market).
We should have started sooner. READ MORE
Computers/Ipads
AAC by 18 months by Uncommon Sense
When people ask when we started using AAC with Maya, I'm as honest as I can be (because really, it's hard to remember). I know we were doing some picture card stuff (and signing) before we got an iPad. I know we got the iPad when she was 2.5 years old (only 5 or 6 months after its release, so we couldn't have moved much faster on that), and we started using a communication app immediately. Over the course of the following year (2.5-3.5 years old) we did a mish-mash of that app (which had turned out to be less than ideal), the Word Book, a trial of another device, and probably some things that I'm forgetting. Finally, at 3.5 years old, we found the Speak for Yourself app and ran (fast) with it. (This video shows our communication highlights from 2 yrs old to 5 years old. )
So, at 2.5 years old we were experimenting and practicing and encouraging and trying to figure out a system that could work . . . and at 3.5 years old we found the system that could work (and we literally couldn't have found it sooner---I think we downloaded the app only two weeks after it was put on the market).
We should have started sooner. READ MORE
Building a Bridge With Echolalia
The key to understanding echolalia is to recognize that it's not meaningless, purposeless or mindless repetition. It's communication.
In part one of this post we looked at lots of possible functions for echolalia, now let's see how you can use it as a powerful tool for helping you to connect with your kids.
Echolalia is an interesting but commonly misunderstood behaviour. Most kids do it at some point, and autistic kids can continue with it for longer and even into adulthood. Many approaches seem to advocate finding ways to fix, control or eliminate the behaviour - but not only is this not in your kids' best interests, it's missing out on a wonderful opportunity to connect with them. READ MORE
The key to understanding echolalia is to recognize that it's not meaningless, purposeless or mindless repetition. It's communication.
In part one of this post we looked at lots of possible functions for echolalia, now let's see how you can use it as a powerful tool for helping you to connect with your kids.
Echolalia is an interesting but commonly misunderstood behaviour. Most kids do it at some point, and autistic kids can continue with it for longer and even into adulthood. Many approaches seem to advocate finding ways to fix, control or eliminate the behaviour - but not only is this not in your kids' best interests, it's missing out on a wonderful opportunity to connect with them. READ MORE
The following quote by Ellen Notbohm, a non-autistic professional, offers as an explanation of "challenging" stims that non-autistic people need to understand. Other related links in the STIMMING section are by autistic conributors:
"Stims (self-stimulating behavior) are common in children with autism, and they range from quietly quirky and relatively harmless to disturbing and potentially harmful to self and others. What we must first understand and acceptis that stimming is the child’s attempt to fill a need. Until that need is identified and addressed, the stimming will continue. We may succeed in squashing a stim, but another stim will almost surely arise in its place until the need is filled. Many stims fill sensory needs, some have emotional roots. When a child is nonverbal, vocal stimming is an attempt to communicate those needs in one of the few ways s/he is able. If the stimming increases, so has her need increased. Imagine her festering frustration as she keeps trying to express what’s wrong, and no one gets it. And the more she tries to communicate it, the more she gets shushed. The world in which she lives doesn’t recognize her language. She has no means of functional communication." READ MORE
"Stims (self-stimulating behavior) are common in children with autism, and they range from quietly quirky and relatively harmless to disturbing and potentially harmful to self and others. What we must first understand and acceptis that stimming is the child’s attempt to fill a need. Until that need is identified and addressed, the stimming will continue. We may succeed in squashing a stim, but another stim will almost surely arise in its place until the need is filled. Many stims fill sensory needs, some have emotional roots. When a child is nonverbal, vocal stimming is an attempt to communicate those needs in one of the few ways s/he is able. If the stimming increases, so has her need increased. Imagine her festering frustration as she keeps trying to express what’s wrong, and no one gets it. And the more she tries to communicate it, the more she gets shushed. The world in which she lives doesn’t recognize her language. She has no means of functional communication." READ MORE
DIfferent Roads to Success by a Diary of a Mom
(non-autistic parent - passionate post re. Communication)
...It’s not always easy to find the method that will work for each individual. Sometimes it appears to be impossible. Or we find something that works but it’s infuriatingly limited. “I want …” with a list of one’s most commonly consumed foods is a great place to start, but it’s not going to mitigate the frustration that comes from not being able to reliably convey everything else. Including, “the food I really want isn’t even on this list.”
It’s heartbreaking. And the more I see and the more people I spend time with who struggle with severe communication challenges, the more I believe that not being understood is one of the most pressing root causes of what we stubbornly call “maladaptive behaviors.” (Physical pain, sensory overwhelm and emotional dysregulation being others on Billboard’s Top Ten.)... READ MORE
(non-autistic parent - passionate post re. Communication)
...It’s not always easy to find the method that will work for each individual. Sometimes it appears to be impossible. Or we find something that works but it’s infuriatingly limited. “I want …” with a list of one’s most commonly consumed foods is a great place to start, but it’s not going to mitigate the frustration that comes from not being able to reliably convey everything else. Including, “the food I really want isn’t even on this list.”
It’s heartbreaking. And the more I see and the more people I spend time with who struggle with severe communication challenges, the more I believe that not being understood is one of the most pressing root causes of what we stubbornly call “maladaptive behaviors.” (Physical pain, sensory overwhelm and emotional dysregulation being others on Billboard’s Top Ten.)... READ MORE
