accommodations
PDA Yay
Published July 27, 2009 @ 04:58PM PT
An article from the Star Tribune (MN) iPods may help Asperger's kids navigate life mostly highlights the use of iPods for social prompts (interesting correlation perhaps with the Scientific American story on verbal prompts for AS which deserves a post all its own). It may be fair to expand the scope of usefulness to Personal Digital Assistants (PDAs), prompts, and the autistic spectrum in general.
A PDA with calendar, tasks, and reminder capabilities can be great for those of us with little sense of time. Many organizational programs have graphical capabilities for people who don't resonate well with numbers or words. Notes, tasks, and reminders also can also substitute for short term memory. The awesomeness of PDAs with a built in GPS is invaluable for those of us with a tendency to confuse easily, especially in new places. PDAs that take pictures can help with memory, navigation, orienting in new places, all sorts of things. And PDA applications with favorite sights, sounds, and games can soothe the nerves. Best of all for anyone with executive function issues is that there is only one does-it-all device to keep track of, not a ton of separate calendars, notebooks, devices, etc. to lose, forget about, and curse.
As a long-time PDA user (as soon as they became marginally affordable over a decade ago), I am quite serious when I tell people my executive function skills are present not in my brain, but in my PDA.
The obvious point here is that a PDA can be an invaluable piece of assistive technology for autism-specific "stuff." Plus, PDAs are mainstream, even "cool," so there's no weird looks for using one.
The less obvious point is that it can be beneficial to think about what sort of tool can give a person a skill they don't otherwise have, rather than pouring energy into trying to find a way to make that person have the skill unassisted. What actually works is more important than appearances.
It's Not About the Stuff: On product placement & blogging
Published July 15, 2009 @ 02:27PM PT
The Federal Trade Commission is looking closely at "product placement" on blogs and online more generally. Eager to get the word out, companies are only too glad to send out samples of their products to bloggers. As yesterday's New York Times reports:
The proliferation of paid sponsorships online has not been without controversy. Some in the online world deride the actions as kickbacks. Others also question the legitimacy of bloggers’ opinions, even when the commercial relationships are clearly outlined to readers.
And the Federal Trade Commission is taking a hard look at such practices and may soon require online media to comply with disclosure rules under its truth-in-advertising guidelines.
A draft of the new rules [a PDF file of these is here] was posted for public comments this year and the staff is to make a formal recommendation to be presented to the commissioners for a vote, perhaps by early fall.
Starting when I was blogging on Autism Vox, I've received emails to get autism-related "stuff" from devices to help a child sleep to supplements. I've only said yes to books, many from Jessica Kingsley Publishers, which produces a number of titles about autism. I try to write briefly about most, while not always able to do full reviews. On my list to complete before the summer is over are: A more complete review of The Horse Boy and also a review of Boy Alone. I also have a copy of the revised Engaging Autism by Dr. Stanley Greenspan on my table, as I'm curious about what's been changed since the first edition. (Actually, there's a part of me that just wants to write reviews of books about autism.)
I also did request and receive a copy of the Transporters DVD and appreciated being able to show it to Charlie to see what he thought about it. (He wasn't interested at all.) I don't think I would have been able to have said anything beyond speculation without seeing how Charlie responded to the DVD. It's been no to other stuff. Also (so you know), I get a regular supply of emails about autism conferences, autism videos, studies about autism, studies about various health topics (obesity, for one), and usually say "thank you, I prefer not" to writing about most.
I am getting a little on my ethical high horse here. But what I really wish to note is that, as Dora put it, a device is just a device. There's so many things that get touted as "helping autistic kids"; the best thing that anyone any gave Charlie was their free time, their compassion, their regard; their patience to really get to know him not based on preconceived notions of autism, but based on actual experience.
We used to joke that not only did we choose the toys to give to Charlie as Christmas and birthday presents; it often felt that we were choosing the toys for ourselves, as we had to teach Charlie to play with them and, indeed to be, interested in them. In twelve years of parenting Charlie, one lesson finally learned is that he pretty much chooses what he wants, based on what is around him, and his preference has never been for any neat new techno-dohicky. Lately the thing he first asks and reaches for has been a strand of olive green worry beads. Charlie's often just been asking me for "green"; we quickly supply the noun so his request is a bit more precise. And those worry beads were mom-and-dad-supplied (meant to be gifts for friends at work; they didn't mind that Charlie claimed them).
And no, not planning to go into any kind of business marketing those as the latest "stress-reducer" for kids on the spectrum. Just glad to have stumbled upon something that Charlie likes!
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.
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
No Fireworks For Our 4th
Published July 04, 2009 @ 12:39AM PT
Lately my son Charlie has been overwhelmed by sounds. This is still a fairly new development: When he was younger, while other autistic children were putting their hands over their ears and crying at barking dogs, Charlie would be unrattled. It's been in the past year that Charlie has clearly become highly, and painfully, attuned to sounds. Certain sounds---those barks, a metal object hitting the floor, someone's loud voice---has evoked a more extreme response, leading us to think, something literally hurts when Charlie hears those sounds.
Jim and I have been listening very closely to the sounds around us and, with Charlie, cringing at every Harley that passes the black car on the Garden State Parkway and tuning in carefully to the volume and pitch of our own voices. Seeing Charlie bow his head and cover his ears when no one is talking, we've realized that he's hearing everything in the background: Fluorescent lights, air-conditioners and fans, the pool filtering system. Charlie sometimes puts on his iPod and noise-canceling headphones, but sometimes just listening to even preferred sounds seems too much. I've been shopping around for noise-canceling headphones of all types (like the kind you use to mow the lawn with) and stuff like a summer-weight hoodie (Charlie always liked having a heavier fleece one in winter). (Suggestions for dealing with this are quite welcome.)
At home, we can keep things quiet, but none of us (Charlie in particular) could hardly stand just to stay in here: Out we must go, seeking to put a little control on the situation with pictures and schedules, explanations and stories. Still, we can't control every single sound. Ambulances will go screeching by and motorcycles, especially because it's summer, it's gotten hot after a rainy June, and, here in the US, it's the Fourth of July weekend.
Which brings me to the subject of fireworks. The Fourth of July falls on a Saturday this year so it's become the reason for a long weekend, with celebrating starting yesterday (and I heard fireworks even on Thursday night). We won't be seeking out any fireworks displays tonight, but some thunderous noises from the sky are going to be inevitable. Charlie's been curious to see the bright displays in the past, but I'm suspecting he'll have his head down and hands over his ears this year.
As in everything with Charlie, we've been trying to figure out the proper balance between changing and accommodating, and gently seeking to desensitize him to some of the sounds out there. A balancing act it is and one also requiring us to (like any parents) measure out how much to protect Charlie from what irks him, and to coax him into learning to live with it.
But I'm still glad fireworks are pretty much a one-time-a-year thing. It's a noisy enough place out there already.
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.
Exclusivity for Inclusion
Published July 02, 2009 @ 10:14AM PT
A special surfing group for ASD kids seems to be meeting with success. Reminds me of ASD night for both kids and adults at the Long Beach Aquarium. And also, some recent dances. What all these activities have in common is that they are exclusive to people with a specific set of needs. Is this a problem with "inclusion?"
Concepts of inclusion have always been hard for me to come to terms with. On one hand, I do not (obviously!) want to be discriminated against, denied an education, or denied any sort of opportunity I may want to seize. On the other hand, I frankly do not want to be included in most "community activities" and often resent the insistence of others that I be included. Good grief, the last thing I want to do, for example, is go shopping at a mall (or as I call it "maul")! Include me in a quiet afternoon hike instead, please! I often feel like that the word "inclusion" is used to mean "participate with all the others in all the same activities" which has never sat well with me.
At the ADA Section II and III talk, the speaker gave a fascinating example of inclusion. People with disabilities are to be included in the same activities as non-disabled people, except in the situation where in order to enable equal access, the activity needs to be modified. For example, a museum tour for people who are not blind would involve not touching the art; however, a special museum tour for people who are blind might involve people being allowed to touch the art.
In the rush to include include include, its important to not loose sight of what inclusion is supposed to be doing. It is not meant to simply fill a seat, to say, yes, this autistic person is in the same setting as non-autistic people of the same age. It is meant to actually include--to enable us to participate effectively in activities that are also open to others. Should we want to participate! (Never lose sight of self-determination.)
This may mean that, like the blind people at the museum, activities need to be created just for us. This isn't bad--it's good. It's the reason why some civil rights laws were created. For us at times, being included does not mean being forced to do the same things in the same way as others, but to do the things we actually want to do in the way that works best for us.
