Communication
Take Action for Accessible Communications
Published July 09, 2009 @ 04:00PM PT
Especially as auditory processing can be an issue for people on the spectrum (not to mention deaf and blind people on the spectrum, not to mention all people in general!), the 21st Century Communications & Video Accessibility Act of 2009, H.R. 3101, is an important piece of U.S. legislation. This act would require, among other things, video captioning and descriptions for internet video programming and widespread accessibility of text messaging on mobile devices. The focus of the act is on accessibility for Internet protocol based communications and emerging technology. Whoot!
From AAPD, here's the checklist for this bill:
1. Contact your Member of the United States House of Representatives. Ask him or her to cosponsor H.R. 3101. Be sure to telephone, send E-mail, and a letter. Find your Member at https://writerep.house.gov/writerep/welcome.shtml
2. Write your two U.S. Senators and ask them to sponsor and introduce a similar bill to H.R. 3101. Find your Senators at http://www.senate.gov/general/contact_information/senators_cfm.cfm
3. Use the bullet points...[on the AAPD site] as appropriate and include any personal stories about lack of access.
4. Thank Rep. Ed Markey for his leadership by using the Email Contact form at http://markey.house.gov/index.php?option=com_email_form&Itemid=124
5. You can find a copy of this legislation on http://www.Thomas.gov soon by typing in the bill number -- H.R. 3101.
6. Pass this Action Alert along to others and encourage them to send letters & E-mails, make phone calls and to complete online contact forms. Be sure to mention "H.R. 3101" in any text or calls made.
7. If possible, please send a copy to AAPD of any letters sent: AAPD, 1629 K Street NW, Suite 950, Washington, DC 20006. Attn. J. Simpson
I've put together a change.org action that covers the letters of support to House Representatives item 1.--please take a moment to personalize the letter and send it out to your legislators!
If anyone reading this would like to convert some of these other points into change.org actions, feel free--remember you can create (respectful and on topic please!) actions here too.
Breaking the Habit
Published July 09, 2009 @ 12:45AM PT
Stiff as a board.
When Charlie was much younger and didn't want to go wherever we were going, he'd arch his back so hard that---like that proverbial board---there was no way we could debend him. Often Jim and I found ourselves each holding one of his hands as he, in essence, swung between us (the back-arching also seemed to involve curling up his feet). I'll admit that we felt pretty bad to be dragging (carrying) our little boy; we had to marvel at the strength of his arms.
In those early days of parenting Charlie, I guess you could say we were forever pulling with force rather than with control. We were both pretty new to parenting when Charlie was diagnosed with autism in July of 1999 (is that why I'm remember those days, because it's now been almost ten years?). (I just remembered how we spent that hot Fourth of July in Minnesota---we drove out to the suburbs west of Minneapolis and Charlie made a memorable dash into Lake Excelsior and of course I hadn't brought any extra clothes; he conked out on the way home then was awake far into the hot night.)
As each day passed, Charlie seemed more and more insistent on doing things a certain way and one way only. Notably, when walking down the path from the front steps of our duplex to the sidewalk, he would, could, only go right. Attempts to lead, pull, and carry him to go left resulted in screams of an ear-curdling sort (and, it just occurred to me, of a sort that he himself would not tolerate these days), more back-arching, and the like. We gradually learned one reason for Charlie's insistence on right not left: On the street to the right was a low stone wall whose intricate patterning Charlie would have spent hours pacing back and forth before.
We've since learned that Charlie is certainly drawn to such patterns and sometimes creates his own as a sort of communication. Back then in the spring and summer of 1999, we felt simply helpless and stuck with Charlie in a box with rigid sides and no openings. Sometimes we felt like we'd never be able to walk beyond that old stone wall. And, as the days passed, even standing in front of the stone wall---what Charlie seemed to be indicating he wanted to do---made him no more happy or at ease then turning left down the path; he was agitated, weepy, unhappy.
Over the years, we learned how to help Charlie move through and beyond these rituals, even while (1) seeing how we ourselves are in need of some of our own routines and rituals (morning coffee.....) and (2) realizing that his need for order and routine is as much a strength. Indeed, as parents of a child on the spectrum, we frequently find ourselves trying to balance between the same old same old and gently pulling Charlie forward.
To Communicate and How, That is the Question
Published July 05, 2009 @ 04:18PM PT
Communication's been on my mind a lot this summer.
We're constantly seeking ways to help Charlie communicate better in words and language, even as Jim and I are ever trying to understand what Charlie is saying to us, with words and (as if more often the case than not, due to his limited verbal ability) without. We've consequently been looking much more at augmentative communication devices while being careful to note that, as Dora posted, a device is just a device, and that, while Charlie has a lot more that he would like to communicate, there's more than likely no magic machine that will lead him to start regaling us with paragraphs. (Though I wouldn't be unglad if that did happen.) (It would certainly be interesting.)
Always encouraging to read about a story like that of Colin Monichon in yesterday's Mercury News (California). Monichon just graduated from Branham High School. He's on the autism spectrum and was able to transition from from special education to "on-level, mainstreamed courses"; he uses a Lightwriter to type out what he wants to communicate (he does not speak):
Colin began school at an early age and enjoyed attending. But "as I got older," he wrote, "the classes changed and became more like baby-sitting. We would sit in circles and the teacher would sing. I was in a severely disabled class where they did not expect us to learn how to read.
I got hit a lot by a big kid in class because they did not have enough staff to watch everyone. That is when the school first gave me an aide. I had only four picture icons (to express personal needs) and no other way to talk."
.......
After proving his cognitive skills through his new means of communication, he was transferred to an inclusion program, where he faced new struggles.
"I missed school at least one day a week because my aide did not come to school," he wrote. "Many days, my aide and I spent more time walking the playground than we did in class. I then spent a year being home-schooled because the district could not find me an appropriate aide or include me in regular education. I was very lonely and missed being around other students and people my age."
Give a student a communication device and he'll.................. communicate.
Sensory Integration and Implications on Understanding Speech
Published July 04, 2009 @ 12:07PM PT
Many of us on the spectrum report a lot of difficulty making out what people are saying. Some of us have been additionally diagnosed with auditory processing disorder (sorry about the "in children" insistence in that article--it's otherwise a good article and the info is true of adults as well). Difficulty separating foreground from background noise is commonly reported. Earlier this year I posted on mono-sensing and understanding speech and questioned whether difficulty integrating vision and hearing might contribute to auditory processing issues.
Now it seems like there's some science backing up our experiences from City College of New York's Dr. John J. Foxe,
"Sensory integration dysfunction has long been speculated to be a core component of autism spectrum disorder (ASD) but there has been precious little hard empirical evidence to support this notion. Viewing a speaker's articulatory movements can greatly improve a listener's ability to understand spoken words, and this is especially the case under noisy environmental conditions.
"These results are the first of their kind to verify that children with autism have substantial difficulties in these situations..."
Foxe goes on to describe the implications this has for classrooms--that smaller, quieter classrooms that are more accommodating of auditory processing difficulties are a good idea.
"Being able to detect speech in noise plays a vital role in how we communicate with each other because our listening environments are almost never quiet. Even the hum of air conditioners or fans that we can easily ignore may adversely impact these children's ability to understand speech in the classroom."
Again, children children children, but these issues are definitely not limited to children! The science doesn't generalize, but the concepts likely do (at least they do in my experience as an N of 1). Environmental system hums, lighting hums, the shuffling of papers and clattering of pens and shifting in seats--all things that as a graduate student I fight through in order to make out what the instructor is saying. And background noise is always there--it does not "turn off." This makes listening to speech something that is exhausting, fades in and out, and is deeply unreliable.
Autism may be less "mysterious" when our experience of the world, such as our experience of others' speech, is better understood. This can pave the way to more accommodating environments which may lead to more opportunities and a higher quality of life.
image is a spectrogram of a man saying "19th century," source wikipedia
A Device is Just a Device
Published July 03, 2009 @ 09:59AM PT
Anyone who reads what I write here (all 6 of you ;-P) probably knows that I'm a huge fan of assistive technology. However, it's important not to mislead about what an assistive technology really is.
I almost passed up Weighted Belt for Autism? -- Research Summary because, well, it's not, in fact, anything resembling a "research summary" (or even a well written or interesting article). But then it is pretty illustrative of this theme. Why would anyone think the application of a piece of assistive technology--a weighted belt--would be a "cure" for anything? Any more than a car is a "cure" for not being able to run really fast?
Sometimes unrealistic expectations get put on a device. Once a man observed me use my speech device--something I have high levels of skill in. "I want one just like that," the man told others, and VR purchased him one. Then I was asked to help show him how to use it.
Now, I touch-type 80 - 90 words a minute, have been using typing-as-conversation for decades, my communication processes function natively in writing far better than they do in speech, and I've had benefit of working with an SLP who specializes in assistive technology. Unfortunately, the man is an exceptionally slow hunt-and-peck typer with a preference for speech over writing. And I am no SLP. This lead to some disappointment.
Or, here's a second story: My state has a lovely program to enable all individuals to have telephone access. I have a speaker phone through this program, and my speech device right next to it. However, I don't use the telephone any more than I did before I had this system. Because, well, I don't have any better phone skills than I did before I had this system. I still have no clue when it's my turn to speak, can't understand most of what an unfamiliar voice is saying, and any number of other things that make using the telephone functional.
The two-parter key point here is that, one, assistive technology can make a HUGE difference in the types of activities that are available to a person. I can do things with AT that I could never dream of doing without. But, two, this is not because of the device itself. A device is just a device. What makes a device truly functional is the individual who uses it.
Whether it's technology for sensory needs like a weighted belt (or my beloved extra heavy, knee-high boots), or a speech device, or a telephone, or anything all else, the usefulness of the item is going to depend on the skill, needs, and personality of the person using it as much as it is on the device. And successful use of a device is akin to successful use of a car or a computer--it's not a cure for anything, it's technology that enables us to do things we could not do otherwise.
Silence, Talking, & Dogs
Published June 28, 2009 @ 12:30AM PT
I've been writing a bit about communication, language, talking, speech lately---this is one of my favorite topics, and not only because of all the hours days years time we've been sitting on the floor with Charlie or observing him arranging things. It's actually because of something that not's about Charlie, but about me. (The animals come in a bit later.)
I was no talker when I was a child. Indeed I was quite the antithesis of a talker. I was extremely shy (my mom has told me that I would burst into tears if someone said "hi" to me or just looked my way; only my parents and one favorite uncle were "allowed" to carry me, or I'd really cry). I just really did not like talking and it wasn't until I was a junior in college that I started to raise my hand to answer questions. (In other words, I spent years and years desperately hoping that I wouldn't be called on.) And, when I did start to try to volunteer answers to questions, from the moment I raised my hand my heart would be beating doubly or triply fast, my face and palms got hot, my stomach caved, and by the time when (if) I got called, I started by mumbling out something incoherent.
In college, I was an editor for an "alternative newspaper." Many member of the staff were much more verbally dexterous than me and I suspect that trying to keep up with them during regular all-nighters to get the paper out honed my own ability to talk. Jim hails from the part of (northern) New Jersey where many of those college friend were from, so I guess you could say I've had many more years to finesse my verbal sparring skills, and teaching students from the age of middle school teaches one to be quick on one's feet, and with words.
Maybe some of this is why, while always wishing that Charlie was able to talk more (how different things would be if he could just tell us what bothered him at school), I've often felt that, talking or not, he's always communicating something, even if in fragments and bits of words and sounds. And so I had a bit of an odd feeling about some things in a recent Scientific American article about whether or not dogs can talk.
Art Speaks
Published June 25, 2009 @ 02:13PM PT
I've been writing about using less talk and more visuals to help Charlie throughout the day, and in communicating with him. It's occurring to me that these visuals and images aren't necessarily how Charlie visualizes things. They're based on what we think might be an accurate, or at least a helpful, representation, of how he takes in the world.
I know we could be really really wrong. I was reminded of this recently when I showed Charlie a card for "bike riding" and he said "black car"---I took another look and there was the back end of our car in the photo, to the left of Charlie astride his bike: Same photo, different focuses.
The June 23rd Miami Herald reports on an exhibition of artwork created by developmentally disabled adults. There's an interesting twist in how the artists were asked to conceive of their work:
It isn't always easy for someone with autism to communicate -- much less share their innermost feelings.
But for Miami Beach artists Stewart and Dena Stewart, helping those who are hard to reach put their emotions on canvas has become a calling.
For months, the Stewarts -- co-founders of the Beach-based Center for Folk and Community Art -- have helped a group of developmentally disabled adults create pieces of artwork that reflect their life stories.
''We asked everybody to write something about what they would like people to know about them,'' said Stewart. ``Then, based on what they've written, we show them how to create their own artwork to go along with the stories.''
So far, Charlie has not yet shown himself inclined to represent his thoughts, wishes, ideas in writing. So we keep looking, though I'm still regularly stumped about how to understand what he's thinking. Arrangements like this one help quite a bit: It seems that he sees things in terms of patterns of colors, textures, materials (metal and plastic utensils) and shapes. Things get placed into rows (and the hardwood floorboards help).
All of which gives me a lot to think about.
