I just got finished reading this excellent article: http://www.assistiveware.com/are-our-assumptions-about-autism-and-aac-all-wrong
Fortunately, I’ve only once seen a case where an autistic client’s AAC was used in the horribly restrictive way that this article warns against. I have also been privileged to witness some wonderful AAC uses, and I’m in the process of learning how to encourage even more.
But let me back up a little here and tell a story.
The family cat enters the living room and my client perks up and points.
“At!” He says excitedly, “At!”
“Yes,” I say with an encouraging smile, “That’s a cat.”
“At,” he repeats.
“Cat,” I agree. A few minutes later, just in case I had forgotten, he points at the kitty again.
“At! AT! AT!” He looks extremely proud of himself, as though he has just discovered (or possibly invented) the entire idea of cats.
“You’re so smart. It IS a cat.”
“Yow,” he adds, grinning from ear to ear.
“Yes! Cats say meow!”
“Yow. Ow. At.”
“I see that.”
This client wasn’t one of my Respite kids. He was a typically developing toddler. And I suspect anyone who has ever had a toddler has had many conversations of this type. This is by way of reminding you what “normal” language development looks like. Lots of labeling. Lots of repetition. Lots of speech that, while not meaningless, seems rather purposeless.
So why on Earth, when an autistic child does this on their AAC, do people call it “stimming” and take the device away? Or worry that it is inappropriate, problematic, or inhibiting learning? And even if they don’t object, they certainly don’t engage and respond, much less encourage. And I think they should.
A client with some fine motor difficulties forms odd sentences on a device, inserting the word “iPad” at intervals, so it might read something like “iPad I want iPad park iPad swings.” Watching this, I develop a theory. I think the “iPad” button is being used as a home base, a starting point, a reference. “I know how to get to the ‘park’ button from ‘iPad,’ so I’ll make sure I start at ‘iPad’ first.” This 7-year-old had invented a strategy to help overcome difficulties with motor planning… a strategy that could easily be overlooked or considered a “mistake.” Kids are often much smarter than we give them credit for.
A pre-teen client relaxes on the couch, casually exploring her AAC program. She has a lot of pre-programmed phrases. “Hi, how are you?” “I’m fine.” “My name is Suzanne.” “Call me Suze.”
“Hi Suze!” I say. I want to acknowledge her words, even though I don’t think they are actually directed at me.
“How are you?” The device asks, and she answers it herself, verbally. “I’m good!” It looks almost like she’s having a conversation with the device… Talking to herself, as it were. Maybe she’s got an imaginary friend. Or maybe she’s practicing. I used to practice saying things in the mirror all the time. This kind of “non-meaningful” device use has never interfered with her ability to also use the device “properly” for communication. And she’s enjoying it. People learn better when they’re having fun.
“My name is Suzanne.” says the device. “Call me Suze.”
I’m making toast for an 8-year-old client while his family relaxes in the next room. This kid is very smart, but doesn’t use AAC as much as we’d like. I suspect it feels very limiting to him, as he’s a very precise person. But he finds ways to work around the problems. Sometimes they are downright ingenious.
“I want to eat toast toast toast.” says the device.
His Daddy smiles and sighs, “Don’t worry, buddy, you’ll get your toast. She’s making it for you.” Daddy thought he was just asking for toast. Again. Three minutes after the last time he asked. Daddy thought he was pestering.
“Yup! Toast coming right up!” I enthused. I thought he was just excited. I figured this was his way of saying “Yay! Toast!”
His 10-year-old brother, however, understood something that neither of us adults (both of whom are pretty close to him) even considered.
“He’s telling you he wants three pieces of toast.”
Oh. Toast toast toast. Three toasts. Of course. I’m so glad there wasn’t a therapist there to “correct” him. The repetition had a specific meaning. I wonder how often we miss the messages intended by the WAY in which our clients use AAC, messages we probably dismiss as quirks, oddities, or mistakes.
A year later. The same client has a newer AAC program, one with more flexible grammar and a much larger vocabulary. But he still doesn’t use it for much besides simple “I want” statements. And I don’t know how to encourage it, but here are a few things I’m trying:
- Using the device myself, in his presence. It’s hard, and time consuming, trying to express thoughts this way. Several times I’ve told myself I’ll only use the device and not speak for a given length of time… and invariably, I’ve failed and resorted to speech. That tells me a lot about why exploring the device during downtime is so important. You need to learn your way around so that when you actually want to say something to someone, it doesn’t take you ten minutes to locate all the words you need. I’ve said serious things and silly things and simple things. “I like music.” “I know this is hard work.” “You rock!” I’ve used it to ask him questions. He doesn’t answer often.
- Inputting the beginning of a sentence, such as “I like…” or “I feel…” and handing him the device so he can finish the statement. He’s done so once or twice. Not usually, though.
- Carrying the device around, and handing it to him when he seems to be trying to express something. What active 10-year-old is going to walk around holding something that size? Or any size? Something that fits into a pocket might work. Or having the device always set up in a specific spot so he can run over to it whenever he needs to. That can work at home and school and maybe the playground, but I realize that it’s a serious logistical issue. If you had to put in the effort of finding something or going to another room every single time you wanted to say something, how often do you think you’d bother for minor things?
He and I relax at the laundromat while his Mom goes to pick up his brother from practice. We both enjoy watching the laundry go around, hearing the regular swooshing of the machines. I find “washing machine” on his device.
“Washing machine. Washing machine.” Verbally, I add “I like watching the–” and complete my sentence on the device. “Washing machine.”
He looks up from the machine he is currently watching. I hand him the device, show him how to navigate to the “washing machine” button, under Appliances.
“Washing machine.” He says, then puts the device down.
“Washing machiiiine” I repeat verbally, drawing the word out, exaggerating. I giggle and he smiles. I pick up the device and find “dryer” next to “washing machine,” with an identical picture.
“Dryer dryer dryer.” I write. He looks at me, smiles. My own voice echoes the device. “Dryer.” I point at the dryers in the laundromat, even though I’m quite certain he already knows which is which. I hand him the device. I point to the button that says “dryer” and repeat the word verbally again.
“Washing machine dryer washing machine dryer dryer dryer” he writes.
“Cool,” I say verbally, “I like watching the washing machine too. And the dryer. But especially the washing machine.”
Doesn’t this conversation sound… familiar?
I… wow. Just wow. This is important.
As Amy Sequenzia so eloquently states: “ABA is not only abusive to Autistic children, it makes ableism and abuse acceptable. “Experts” want 40 hours/week of this and parents who don’t comply can lose their children. ABA creates a culture of normalized abuse.”
The following is a guest post composed of a series of writings by Bernice Olivas, who has generously agreed to share her experience. Hers is a harrowing story, but one that illustrates the dangers of demanding compliance on so many levels – and it is a story that needs to be understood.
It’s been two years since Nebraska’s Child Protection Services threatened to take away her children because she refused to place them in full-time (40 hrs/week) compliance-based training.
She and her husband were never accused of abuse or neglect, the only reason CPS was involved with her family was because her children are autistic and some…
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A good essay about an important event in the history of Disability Rights
A determined Georgia woman and her lawyer changed the landscape for thousands of institutionalized persons with developmental disabilities who yearn to live in their communities.
©Robin Nelson All rights reserved
Decatur, GA — Lois Curtis blew the chalk dust from her finished portrait and handed it to her young visitor. “That’s you!” beamed the 43 year-old self-taught artist. “I like to do pictures,” she exclaimed. Lois began sketching another face, of no one in particular, while humming a favorite tune to herself.
She might sketch a dozen pictures in an afternoon, or be content to write letters to friends, acquaintances, anyone for whom she might have an address. “Give me your address so I can write to you,” she said to her visitor as she reached for her ever-present cigarettes. “I like to write letters, too.”
Lois fills her days at the Peer Center in Decatur, a peer-run alternative…
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Are you planning an Autism Acceptance Event this April? Something that challenges traditional “awareness” by centering the voices and experiences of Autistic people?
PACLA wants to know about your event! We want to put together a resource for others to be able to participate and contribute to events in their neighborhood or city, or online where anyone can participate!
We’ve had enough “awareness”, let’s celebrate Autistic people this April with positive messages that embrace acceptance, inclusion and neurodiversity!
Image: Red text in upper left corner reads: Are you planning an Autism Acceptance Month Event? PACLA wants to hear about it! Red text in lower right corner reads: “We want to signal boost your Autism Acceptance Event onour blog! Live events or online events! Any event that celebrates Autsitic culture, pride…
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I work with kids of all ability levels. To me, they are all brilliant in some way, and I celebrate their every accomplishment.
There are the ones I know will go far, assuming no one breaks them too badly– the ones who show that “genius” streak already, in spite of language delays or motor skill difficulties.
There are the ones whose intelligence and potential I cannot judge at all.
And there are, at times, those I think will always need major support.
And I adore them all. I respect them all. They all deserve to be acknowledged as individuals and treated as real people. They deserve friends, fun, loving families. They deserve to have their preferences noted and their personalities appreciated. They deserve to be talked to, listened to (even if they can’t use words), read bedtime stories. They deserve to be dressed in nice clothing and taken out for treats. They deserve a turn at activities. They deserve the chance to try to do things themselves– over and over and over. They also deserve to have someone do things for them or assist them when needed.
There is this thing that happens sometimes.
Parent has an autistic child. Autistic child doesn’t speak, or their speech isn’t an accurate window into what they are thinking. Autistic child is presumed to be very significantly intellectually disabled.
Years later, a method of communication is found that works for the child, and it turns out that they are in fact very smart. Very smart! The parents are overjoyed. They begin talking about presuming competence, the least dangerous assumption, that not being able to speak is not the same as not having anything to say.
They are so, so excited.
And they start talking about all the incorrect assumptions they had. If we’d known, they say, we wouldn’t have done X. If we had known they could read, think, hear us.
And it’s a big problem, because the way they talk…..they think the problem was that they treated their child like…
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[Update!! Those who want a tool similar to this can download one for free from http://autismandhealth.org/%5D
I have heard many complaints from autistic people and other people with disabilities about their struggles in communicating with healthcare professionals, etc.. I propose a simple questionnaire for professionals to use. These would be standard intake questions, and the answers would be put at the front of the patient/client’s chart.
If you like this idea, please take this quick online survey!!!
If I get enough positive feedback, I will try to make this tool become a reality. I don’t know how, but I will try. Please help me spread the word.
(If you have trouble wti the survey, you can also comment here on facebook: https://www.facebook.com/notes/open-discussion-on-autism/suggested-questionnaire-for-healthcare-and-related-professionals/789224341139804)
This post is my new manifesto. I wish every parent, therapist, teacher, doctor, and autism researcher in the world had to read it. It may not be perfect, but it’s pretty darn close.
This week, I watched a community implode. I’m not going to talk about that, though, because it was very painful to watch people I love being treated so badly. But a lot of the implosion centered around a topic I do want to talk about. That topic is ABA – Applied Behavior Analysis, a common type of therapy for Autistic children. I watched people fight around in circles, chasing their metaphorical tails. It will take some time and lots of words to unpack this topic, but I hope you will stick with me on this because it’s so important and there is a lot that needs to be understood here.
Here’s the argument in a nutshell. It gets longer, angrier, and much more detailed than this, but I am exhausted just from reading the fighting, so I’m boiling it all down to two statements. And both statements are correct.
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