Communication
Extremes and Empathy
Published May 12, 2009 @ 12:50AM PT
Charlie tends either to be hyper-sensitive or hypo-sensitive to touch, I wrote yesterday: He requests deep pressure and applies to himself (by wrapping himself tight as a mummy in a fleece blanket when he sleeps); he can either be jarred, though, by a light tap of the finger, or not seem to notice it. Further, he also seems to favor strongly flavored food (as revealed by a recent liking for horseradish). So a "a radical new autism theory" written about by Maia Szalavitz in The Daily Beast made quite a bit of sense to me.
When it comes to feeling, Charlie tends to extremes, whether it's the deep, massage-like pressure or in terms of how he feels, senses, and experiences emotions. The "intense world" theory, which has been put forth by Henry and Kamila Markram of the Swiss Federal Institute of Technology in Lausanne, suggests that " fundamental problem in autism-spectrum disorders is not a social deficiency, but rather an overwhelming fear response." Further:
“There are those who say autistic people don’t feel enough,” says Kamila Markram. “We’re saying exactly the opposite: They feel too much.” Virtually all people with ASD report various types of oversensitivity and intense fear. The Markrams argue that social difficulties of those with ASDs stem from trying to cope with a world where someone has turned the volume on all the senses and feelings up past 10. If hearing your parents’ voices while sitting in your crib felt like listening to Lou Reed’s Metal Machine Music on acid, you, too, might prefer to curl in a corner and rock.
But of course, this sort of withdrawal and self-soothing behavior—repetitive movements, echoing words or actions and failing to make eye contact—interferes with normal social development. Without the experience other kids get through ordinary social interactions, children on the spectrum never learn to understand subtle signals.
Phil Schwarz, a software developer from Massachusetts, is vice president of the Asperger’s Associaton of New England and has a child with the condition.
“I think that it’s a stereotype or a misconception that folks on spectrum lack empathy,” he says. Schwarz notes that autism is not a unitary condition—“if you’ve seen one Aspie, you’ve seen one Aspie,” he says, using the colloquial term. But he adds, “I think most people with ASD feel emotional empathy and care about the welfare of others very deeply.”
Feeling too intensely, rather than less than the "typical" person and not at all---this would be quite the opposite view to some commonly (though not correctly) held dicta about autistic individuals as feeling too little; as being emotionally "withdrawn," "lacking empathy," and unable to detect the emotions of others.
Charlie, Jim and I and anyone who knows him well often say, is a very emotional kid.
Brain Wave Communicator
Published May 06, 2009 @ 04:00PM PT
Following up on the autism and motor planning and communication themes, how about this new development from University of Wisconsin?
Adam Wilson posted two messages on Twitter on April 15. The first one, "GO BADGERS," might have been sent by any University of Wisconsin-Madison student cheering for the school team.
His second post, 20 minutes later, was a little more unusual: "SPELLING WITH MY BRAIN."
Wilson, a doctoral student in biomedical engineering, was confirming an announcement he had made two weeks earlier -- his lab had developed a way to post messages on Twitter using electrical impulses generated by thought.
More at the lab's blog, Wired, and Wisconsin Public Radio.
While the new technology is talked of in the context of paralysis, could it perhaps be useful in the context of apraxia or dyspraxia? No motor planning needed... ?
Autism and Motor Planning
Published May 05, 2009 @ 03:57PM PT
A study at Kennedy Kreiger, First Neuroimaging Study Examining Motor Execution In Children With Autism Reveals Brain Activation Differences (popular account) examines brain-level differences between autistic and non-autistic children in motor execution--and finds them.
This is of interest to me, as motor planning is something I struggle with myself, and it is also reported by others on the spectrum. Apraxia or dyspraxia co-diagnoses are common enough that both myself and the other speaker on AAC yesterday, Joanne Cafiero, made specific mention of motor planning as relates to difficulties with speech (for the record, I have a speech apraxia Dx).
The study Infant and toddler oral- and manual-motor skills predict later speech fluency in autism (PDF) found a significant correlation between early oral and manual motor skills and later speech fluency. This study also suggests a link between motor skills and autism.
Of course not all people on the spectrum report differences in motor functioning, and not all people on the spectrum have difficulty producing speech. However, a fair amount of us do and I'm pleased to see more research being done in this area. I'm reminded of a quote from Lucy Blackman which I relate to very much (see Lucy's Story), "Being unable to say something, actually is the same as not being able to move in response to an instruction."
Recognition of the role of motor planning in autism could change the way people think about autism and communication--and in turn that could open more opportunities for us to have communication systems that function well for us.
When the Words Run Out (There's Some Other Stuff)
Published May 04, 2009 @ 04:35PM PT
I'm (well, OK, perhaps this is open to debate) a pretty skilled writer. I wasn't born that way though; I've studied. And practiced. A lot. I've worked hard; made communication with words a priority. To someone who reads this blog, it probably looks like the words just flow out every day, and, well, sometimes they do, but there's a lot that goes unseen too.
I've been writing pretty much non-stop for a week and a half. I've had to prepare two public testimonies for state hearings. I had the honor and privilege of being asked to present on one of my favorite topics, augmentative and alternative communication, to the IACC. I've been working on grant proposals for my research group. Extra lots of work means extra stress means I rely more and more on my keyboard and notepad for my communication, which means more writing, typing, writing--
However it may look though, words really don't come easily to me. Words are non-native to my thinking. They are the flattened, translated, always-less-that-accurate shadows of what I truly want to express. Words come more easily than they once did, but they are still hard work. Hard work that no one sees from the other side of the Internet from me.
I am, at this point, pretty much all word-ed out.
So, a reminder: not all communication happens in words. Nor is all communication best served through words. Some alternatives:
- Gesture
- Body language
- Sign languages
- Consistent idiosyncratic behavior
- Facial expressions
- Non-speech utterances
- Dance
- Music
- Visual arts
- Formal visual languages
- Touch
- more--what else?--but this is where I run the rest of the way out of words--
Stolen Dynavox & Safeguarding Communication
Published May 02, 2009 @ 06:27PM PT
We've written quite a bit about assistive technology and its numerous, potential benefits. While my son currently does not have one, the use of an augmentative communication device for him has brought up repeatedly, due to his limited speech. Currently, he does well enough talking. Another technological device come with benefits, for sure, but also new problems: We've been through a couple of iPods and iPod cases, and things get dropped, thrown, cast upon the lawn, left behind. Charlie brings his iPod to school (it's in the plans to teach him to put on his headphones and turn on the iPod when another student is vocalizing loudly or crying----this has been a long-time reason for him getting upset) and sometimes it hasn't made it into his bookbag.
8-year-old Casey Duncan's Dynavox was stolen from his mother's car in Liberty City, East Texas, last Wednesday, today's Typer Paper reports. Angel Duncan had saved for four years to purchase the device; Casey had had his Dynavox for only a year. Duncan thinks that thieves who stole it may have through the Dynavox---left in her car overnight as part of her son's routine---may have thought it was a laptop:
"I just hope they read this and turn it in somewhere, or a pawnshop realizes what it is and contacts law enforcement. He is really lost without it," [Duncan] said.
Ms. Duncan said even if she orders another device, delivery would take at least six weeks.
"I wish we could just get it back. It is not about the monetary aspect of it, but what it means to him. He has been unhappy since it was stolen. All he did today is write on his board that he was sad," she said.
Get Casey's Dynavox home-----I'll admit this case makes me think twice about technology (for the time being) and certainly of the need to take a lot of precautions. Communication by any means is a right(following up on Dora's post earlier today) and we need to safeguard it, legally and literally.
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.
Just Because I'm Quiet Doesn't Mean I Don't Understand
Published May 01, 2009 @ 09:11AM PT
[2009 Blogging Against Disablism Day submission]
About a year ago, coming home from doing an invited presentation at a national scientific conference (AAIDD's annual meeting if you're interested), I listened while the two middle-aged businessmen sitting in my row discussed, loudly, their misfortune at being forced to sit near me. "Well, at least it's a short ride," they consoled each other. I was unable to form words, too tired to pull out my communication device to set them straight, but believe me, I understood the message of discrimination.
Lucy Blackman writes in her book Lucy's Story, "My giggling, hand-biting, angry-singing days seemed to the staff [at the school] to be more frequent than my interactive cooperative ones. They could not know that my comprehension was good enough for me to be distressed by television news or even drama, such as the episode in Holocaust where intellectually disabled people were loaded into a gas wagon." Lucy Blackman also understood the message of discrimination.
A popular autism video included a mother saying, in front of her autistic daughter, that the only reason why she didn't kill her autistic daughter was because of a non-autistic sibling. Perhaps that girl too understood the message of discrimination?
And two days ago at the state capital, I listened to an hour and a half of invited and public testimony in front of the House Education Committee which included gems like, "He was so normal looking...if only he hadn't been so normal looking, it wouldn't have mattered so much that he was self injurious."
Yeah. I'll give a moment here for the urge to vomit (or perhaps the actual vomit) at that horror to pass.
These too, all these: messages of discrimination.
"Much of that was really hard to listen to," another self-advocate started her testimony off-script, responding directly, not quietly, to the message of discrimination.
We understand. We have feelings that can be hurt. She spoke out.
We are not to be discussed in the third person.
We are not to be discussed as objects.
We are not to be discussed as though we are not really there.
I sat at the speakers' table with my spankin' new ultra portable speech device and pressed the right buttons, "It is important that the state of Oregon consult with the cross-disability community regarding media, policy language, and promotional materials related to autism and other developmental disabilities. Like any minority, we need input into how we are being represented in order to combat stigma."
I pressed the right buttons, "Nothing about us, without us."
But whether I/we have the ability to press those buttons or not, whether I/we am/are silent or screaming, either way, believe me, I/we understand.
Just because I'm quiet doesn't mean I deserve discrimination.
