Communication (Is Not Speech) Is a Civil Right
Published May 02, 2009 @ 12:02PM PT
The American Speech-Language-Hearing Association (ASHA) states,
It is the position of the American Speech-Language-Hearing Association (ASHA) that communication is the essence of human life and that all people have the right to communicate to the fullest extent possible. No individuals should be denied this right, irrespective of the type and/or severity of communication, linguistic, social, cognitive, motor, sensory, perceptual, and/or other disability(ies) they may present.
I heard a story of an autistic boy who uses American Sign Language as his primary means of communication. The public school refused to provide him an interpreter on grounds that he is not deaf.
I heard a story of a school system that only allowed its students to use their communication devices at school, but not at home. Imagine being allowed to speak for 5 hours each day and then having that ability taken away from you for the rest of the time.
I read a story about the misconception that AAC is undesirable, when for many of us it is truly our greatest freedom.
My head is mostly tracked into this topic right now between my first intensive (and highly successful) use of Proloquo2Go last week, and preparing a presentation on AAC for the IACC for Monday, so that's about the only topic I can manage a post on today.
It's an important topic though.
Communication is a civil right.
Communication is not speech.
Don't overemphasize speech at the expense of communication.
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Comments (14)
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Dora is committed to improving quality of life for individuals on the autistic spectrum--including herself! She is Co-director of the Academic Autistic Spectrum Partnership in Research and Education and a member of the Autistic Self Advocacy Network's Board of Directors.
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If an autistic child is not acquiring expressive speech on his/her own, then establishing an alternative means of expressive communication that is reliable, trusted, and respected, should be Job 1.
And to the extent possible, and as soon as possible, that means should be made *extensible*. For example, starting with pointing to or pushing buttons for pictorial symbols for Yes, No, and basic requests -- but then teaching literacy and keyboarding together, so that new words can be spelled out.
Progressing through basic phonetics and sight-words, to extensibility through invented spelling, to extensibility through grammatical constructs and etymology, etc. And -- *very* important -- recognizing and leveraging *autodidactic* acquisition of literacy. In this day and age of Sesame Street and even less targeted media, there is *way* more of that than is appropriately recognized. You want to engage what the student is ready for -- not stifle them by guessing too low about their capabilities, and not frustrate them by guessing too high or not mitigating a barrier which needs to be mitigated for them to progress.
The reason this should be Job 1 is that expressive communication is fundamental to getting needs met and problems solved in constructive ways. Ability to communicate will help bypass the lion's share of maladaptive behavior and, conversely, abuse.
The big autism organizations do not push anywhere near hard enough to get AAC, and support in using it, into the hands of people who need it, and whose lives can be greatly transformed for the good by it.
Posted by Phil Schwarz on 05/02/2009 @ 03:08PM PT
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Thank you Phil.
Getting an AAC system for my child early on made a tremendous difference because behavior is communication. Producing speech was more than a matter of motivation for her, but of years of motor and speech therapy to get to that point. PECS was the modality that worked best at that time, but it could have been anything else that would have been the straightest line to functional communication.
We still worked on speech concurrently and she does speak now, but we still use some AAC for her and for me (we both use typical gesture, some sign and text).
As to Dora's point--I've seen too many instances of AAC not made available, not accessible due to funding issues, not respected or restricted through thoughtlessness or convenience, much as described in the post. I take her point that that makes it a civil rights issue. And I agree with you, Phil, that's it an issue that needs more visibility and emphasis by advocacy organizations.
Posted by Regina Claypool-Frey on 05/03/2009 @ 04:29PM PT
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Dora, thanks so much for this extremely important post. You know personally how feel about this topic, and I can only hope a lot of educators start getting this message loud and clear.
Posted by Jane Rake on 05/02/2009 @ 03:32PM PT
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This is a hugely important subject. I've had problems in the past with government agencies and legal tribunals preferring phone or in person and not even offering email at all for access to services. (And then there are work supervisors who never answer their emails.) I wrote an essay on it a while back that made it into an entertainment weekly. It's here:
http://www.straight.com/article-210536/give-autistic-adults-chance?
btw, what does AAC stand for?
Posted by Anemone Cerridwen on 05/02/2009 @ 04:35PM PT
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Hi there, I love your essay! Thank you for posting the link to it.
AAC stands for Augmentative and Alternative Communication
Posted by Dora Raymaker on 05/02/2009 @ 05:52PM PT
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Such an important post, Dora, and so relevant to what we struggle with in our daily life with my son, Nik. He is so clearly motivated to learn and explore, so bright and inquisitive. But he does not have adequate means to convey his most basic needs, let alone the thoughts and nuances which must inhabit his facile mind. He has some rudimentary sign language but struggles b/c of fine motor coordination and PECS has not been successful (or even appealing) for him b/c of poor visual acuity and tracking. Yet, so many educators persist in the belief that "all autistics use PECS" (yes, an educator did actually say that to me once!). My son couldn't care less about PECS but if you gave him a device with buttons and sounds and sequences he could figure out...he'd be flying. (Yes, we're working on getting one, too.)
Posted by Niksmom . on 05/02/2009 @ 05:42PM PT
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Thanks for your comment. The PECS fixation (or rather, critical need to think of solutions other than PECS) is an issue I'm definitely taking care to highlight in my talk. Brightly.
Posted by Dora Raymaker on 05/02/2009 @ 05:47PM PT
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Ms Raymaker
You have indicated what you oppose (PECS fixation).
What do you propose?
Particularly for those persons with Autistic Disorder who have extremely limited communication skills by any means, speech or otherwise?
Or do you deny their existence?
Posted by Harold L Doherty on 05/03/2009 @ 01:48AM PT
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I wonder if you read the original comment from "Niksmom" before posting this response/question. The point is not that PECS shouldn't be used, the point is that a teacher who says "all autistic people use PECS for communication" is ignorant of all the other possible ways to help foster communication. If electronics are more appealing and engaging, why not allow them to be used as opposed to forcing a single solution (in this case PECS) down their throat. If its working for you, fine. If someone else gets better results from Proloquo2Go, fine for them. A rigid approach that implies that "all autistics" must do whatever, is bound for failure.
Posted by Cornelia Rivers on 05/03/2009 @ 06:21AM PT
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Well, one of the possible difficulties someone might have with PECS could be related to difficulty understanding how the pictures (especially if they are line drawings and not particularly realistic ones) correlate with real world objects and events.
So someone with extremely limited communication might benefit from (as was mentioned) an electronic device with a different sort of interface.
Or a communication system involving photographs, or even perhaps of small replicas of real objects (perhaps that could be carried in a small bag?).
Or a system that entailed, say, sound or music or tactile feedback (like a device a person could press buttons on that played songs or spoke numbers associated with particular things or events).
I am sure PECS works very well for some. But in general it is good to avoid assuming any one thing is going to absolutely work for all autistic people. I mean, what if an autistic person is also blind? In that case they'd have to find something that didn't involve pictures at all.
Posted by Anne Corwin on 05/03/2009 @ 11:56AM PT
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"Use your words" doesn't mean only vocalizing--and communication is a two-way street. Nobody asks neurotypicals to substitute active speech for the body language that is so important to "true" communication--and that in AS kids like my son can be missed (by him) or completely miscontrued (by them: e.g., avoiding eye contact = shifty, deceitful in Anglo-European societies.) In these things I am a complete utilitarian: if it works, use it. If it doesn't work, find something else. And don't stop advocating and expanding understanding, battling ignorance, and being positive.
Posted by Toms Mom on 05/03/2009 @ 05:59AM PT
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One time, on discovering I'd managed to use ultramarine blue in everything I'd painted for nearly a year, I asked my teacher, "Is that bad?" My teacher answered, "Wrong question. The question is, 'Does it work?'"
That always stuck with me as a profound reminder in life in general--it's not really what something is that matters, but whether that something is having the desired effect.
I'm rather fond of the utilitarian approach myself :-)
Posted by Dora Raymaker on 05/03/2009 @ 10:50AM PT
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@Toms Mom. "if it works, use it. If it doesn't work, find something else".
That is the game plan I have used.
Posted by L I on 05/03/2009 @ 10:38AM PT
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I don't get it. I don't see why the boy who speaks only sign language can't have a interpreter or folks can't communicate in the way that's best for them... Makes no sense.
Posted by Shondolyn (Synesthesia) Gibson on 05/03/2009 @ 05:34PM PT
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