Communication
AAC Again: Beyond Words
Published June 23, 2009 @ 12:26AM PT
Magnetic stimulation is to be combined with behavior therapy in an NIH-funded four-year clinical trial. It's reported that a pilot study "found that patients with autism 'have fewer tantrums and repetitive behaviors symptomatic of sensory overload after a low-frequency magnetic field is pulsed around their brains through a coil placed near the scalp.'" According to Dr. Manual Casanova, the research is "exciting because it involves no drugs and virtually no side effects" (from WKJK).
While I continue my investigations into/debate over/preparations for starting Charlie on an augmentative communication device (have you signed this pledge?), it occurs to me that I've been forgetting one thing.
Charlie does communicate. Not always with words, it's true. I know that we need to focus on words or some sort of communication that would be readily understood by anyone; it would not do Charlie any good ultimately only to speak a sort of idiolect that only Jim and I kind of understand. On the other hand, all while we're teaching him to talk, he still has plenty that he needs to let us know.
And sometimes, you know, the mountain has to go to Mohammed.
In other words, Jim and I are constantly striving to learn to understand what Charlie is telling us in ways other than with words.
Making Communication Easy
Published June 19, 2009 @ 09:49AM PT
Communication is an active, dynamic process between two or more people. It is not something a single person does or does not do, it is something people do together.
Most people want communication to be easy. They want to exchange messages with each other quickly and efficiently. Most people want most things in their lives to be easy. A hard puzzle may be a fun recreational challenge, but when it comes to getting the day-to-day necessities of life accomplished, easy is almost invariably chosen over hard.
"Why is it," I asked a therapist once, "that sales people treat me poorly when I try to talk to them, but are just fine if I pass them a note card with a question written on it?"
"Because the cards make communication with you much easier for the sales people," the therapist answered. "Because people want communication to be easy."
That exchange made an impression on me; it caused me to re-inventory my tools for communication and begin thinking of communication in terms of how to make it easiest rather than how to make it look the most "normal."
But there is a balance point too--while I work very hard to make communication easy for others, others also bear an equal responsibility to make communication easy for me. Someone told me recently that they know a speech language pathologist who makes a person on the spectrum generate speech sounds, but has never taken the time to figure out what sort of communication the person actually uses--let alone attempted to make communication easy--and has no interest in doing so. Speech is not being used as communication. (Disclaimer: I am not coming down on SLPs in general here--my personal experiences with SLPs have been different.)
Yes, those of us who communicate in non-standard ways should make an effort to make communication easy for others--if only because it in turn will make the exchange easier for us since there will be less confusion and resistance from our communication partners. But also, others need to make that same (and sometimes a bit extra) effort for us. We like things to be easy too. And sometimes it's not even a question of ease--we may need others to make that extra effort to communicate with us on our own terms because otherwise we can't find our way to the common ground where communication can occur at all. Communication is a two way street.
Four Ways to Communicate Better
Published June 12, 2009 @ 04:00PM PT
I'm writing a presentation today on self-advocacy for people who use non-standard communication, and seem unable to hold a thought about anything else in my head. So I'm posting related to that rather than anything more "newsy." Here are the top four things I wish people understood better about communicating with me.
1. Don't make assumptions. Difficulty with speaking and difficulty with thinking are not the same thing. Don't assume that because a person isn't using speech, or because a person's speech sounds very different from most people's, that the person can't understand what is going on, is not capable of their own self-determination, or doesn't have something important to say.
2. Communicate with the person, not with the communication aid. This includes both mechanical devices like speech synthesizers or communication boards as aids, and human translators, be they sign language interpreters, just a friend, or anything else. Never talk about someone in third person ("Can she talk?"); address the person directly ("Can you talk?").
3. Slow down. Many alternative communication methods are slower than real time speech. It's extremely difficult for a person who is used to real time speech to learn how to take turns appropriately with an AAC user, and it can take a lot of time and practice to get good at it--be mindful, and be patient. Real-time speech may also be a little less "real-time" to articulate than folks are used to and also necessitate a slow down. In other words, this item may be more difficult than it sounds. But it's critically important.
4. Be open and communicative. Communication via something besides real-time speech, or even "unusual" speech, can be intimidating for people who are not used to it. Devices can be off-putting, it may be difficult to understand how to react or respond, or to know what the protocols of conversation might be. I've found for my part a few instructions up front on things like, "I can hear you just fine," and, "Please don't talk until I tell you I'm done," or even a joke to help put the person at ease, "I'm not really a robot, honest!" can help a lot with this. However, the communication partner also bears equal responsibility to be communicative about their own needs, "Should I just talk normally?" or "Can you turn up the volume a little?" etc.
Context-Smart AAC
Published June 11, 2009 @ 09:15AM PT
When I saw the headline about a new innovation in Augmentative and Alternative Communication (AAC) Software 'gives children a voice' (or the Guardian's version Device offers hope to children with communication problems) I had my usual cranky thought "why not adults too?" But when I read the article it became immediately clear that, yes, this case, the kid reference really is being used 100% appropriately; the current implementation of this technology does not translate into adult usage at all. However, the broader technology definitely could translate for adults, and is really quite exciting!
The technology uses various sensors to record what a person does during the course of their day at primary school, hence both the name of the technology pilot program "How was school today?" and the reason why the current implementation is quite literally just for kids. The information recorded by the sensors is then used to generate stories about what the person did at school that day, filling in names and activities, and using natural language processing to make it coherent and put it all into neat grammar. The child can then review and edit the story, delete anything they don't want shared, and add remarks like "that was boring."
Next steps for the software involve making it work in additional contexts, and making versions that are appropriate for autistic kids (no longer assuming the child uses a wheelchair perhaps?).
This technology is very interesting for a number of reasons, one being that it sounds like it assists with figuring out what to say as much as it assists with the actual saying. I may be able to use my speech device to tell someone about my day, but I typically have no clue what about my day could possibly be interesting or relevant to others. Most of the time I seem to guess wrong (occasionally with near-catastrophic effect--"you're supposed to tell someone when you have nearly chopped off your finger!" oh, oops...).
The research was done at University of Dundee. Here is the University's page on the project.
The Times Online's story How was school today? Now disabled pupils can tell the story also notes that the principle investigator on the project has cerebral palsy--one more plug for why it's so important to include people who actually use assistive technology in the creation of that technology. We know what is useful to us!
Eager to see what this technology develops into (and finding time to read the academic papers).
Photo source http://news.bbc.co.uk/2/hi/uk_news/scotland/north_east/8081410.stm
Monday Autism News Potpourri
Published June 01, 2009 @ 10:06AM PT
1. Hiss on more state budget cuts that affect developmental disabilities services. Budget cuts last week garnered a huge protest in California and another protest in Louisiana. Budget cuts in Tennessee also made the news.
2. Yay on art. Crossroad Arts in Australia, among other really cool projects, runs an art program for people on the spectrum. A quote from the CEO and director Steve Mayer-Miller in that article:
"The core belief of Crossroad Arts is that participation in the arts helps to build stronger community relationships through celebrating differences and uniqueness," he said.
"The young people with aspergers and autism conditions that I mentor throughout the year have the opportunity to participate in performance pieces that focus on their abilities, not their disabilities, which is great to see."
Art, diversity, and focus on strengths--neat-o!
3. Yay on P2G. USA Today ran a positive a story on Proloquo2Go specifically intersect autism. (But hiss on Ronald Leaf for not understanding what he wants isn't what matters!)
4. Yay on Easter Seals and Newsweek. Easter Seals thanks Newsweek for Claudia Kalb's article Erasing Autism and emphasizes quality of life and supports to boot in its blog post last week, Thanking Newsweek for providing a voice for people with autism. Thank you Easter Seals too, especially for this statement,
The social service community and society at-large must change to ensure that decisions are not being made for individuals with autism, but instead are being made with individuals with autism.
Indeed!
Words Aren't All They're Cracked Up To Be
Published May 30, 2009 @ 12:29AM PT
Special. Spectrum. Severity. When the subject is "autism," a lot of words take on different meanings.
Indeed, communication has become a whole other game for Jim and me over the years with Charlie. He's taught us both to slow down the fast talking and to be better listeners and, too, to learn to listen to communication that doesn't always involve words. And when Charlie does talk, single words tend to take on meanings far beyond what are expected. "No," for instance, sometimes seems to mean something more like "no I don't want to do that right now let me think about it for a few minutes and maybe I'll do it then, capiche?"
(Often, "no" said by Charlie does means no.")
Of all the things that I write about regarding autism, communication is one I've returned to often (indeed, it's a topic that Dora and I both seem to refer to regularly). Teaching Charlie to talk has been a big focus of his education. Charlie's been doing speech therapy since he was two years old. He can say the sounds of all the vowels and consonants though not always clearly. This year, though, he hasn't been doing as much speech therapy or, rather, he hasn't been wanting to do as much: I'm suspecting that sitting at a desk and working on his articulation has started to get a lit-tle tedious after ten years, and gone are the days when the therapist did things like blowing bubbles or winding up wind-up tours to capture Charlie's interest.
A Little Talk and a Lot of Pictures
Published May 29, 2009 @ 12:22AM PT
![](http://www.change.org/photos/wordpress_copies/photo_2-300x225.jpg "\\"Relax\\" card for Charlie\'s activity schedule")
Talk talk talk.
But a picture now---it's worth that proverbial thousand words.
Over the years of being with Charlie, Jim and I've become more and more aware of how much we talk. Jim's a long-time fast-talking Jersey guy (though the real fast talker in the family was actually his mother, when she was better). I started off shy and quiet (liked Latin because I didn't have to converse, just memorize columns of endings and vocabulary) but I'm a reasonably big/fast talker now (gotta keep up). The two of us can let off long bouts of verbiage (and we both go to Charlie's IEP meetings.......).
I'm third-generation Chinese American and my family is more inclined to be quiet. Our family get-togethers always involve food, Chinese and otherwise. Silence has its power too; silence, too, can speak; silence can be a way of communicating, too.
Charlie, as noted here, is a boy of limited words, and with plenty to say. He had apraxia when younger; years of speech therapy (including oral-motor therapy), articulation practice, and physical activity and exercise (to build up his muscles and muscle control) have helped tremendously. Charlie's regularly encouraged to speak in his classroom. In the past few weeks, he's been speaking spontaneously and more often. Yesterday, standing by the kitchen sink, he caught my eye, smiled, and said "Hi." In the YMCA pool last Saturday, he announced "I got the boat today"----the pool was not as busy as usual due to the Memorial Day holiday and Charlie was able to play with some of the pool toys, without anyone hollering "I want that next!" in his ear. And while it's certainly necessary to model talking and speech for Charlie, Jim and I have learned to slow it down and speak at a pace that suits Charlie who, for all of his struggles with articulation and word recall and auditory processing, prefers speech to other forms of communication.
This is why we've yet to seriously start teaching him to use an augmentative communication device though lately some other things have been suggesting that Charlie may soon be ready for one.
