Sensory Integration and Implications on Understanding Speech

by Dora Raymaker

categories: Acceptance, Accommodations and Community Inclusion, Communication, Science and Diagnosis

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

by Kristina Chew

categories: Acceptance, Accommodations and Community Inclusion, Health and Safety

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.

AS Emerging Film Maker

by Dora Raymaker

category: art and music

Published July 03, 2009 @ 04:00PM PT

Little Theatre's Emerging Filmmakers program in Rochester (NY) is featuring a film called Aging Trees of Knowledge: Part Five: My Legacy (Gittel Jaskulski). Here is local news of it. The film maker is Adrian Esposito.

The New York Office of MR & DD has a profile of Esposito, who found his expression through the medium of film. Esposito has been actively engaged in film making since the age of 12, and he currently has his own film company Espocinema. An interest he is hoping to turn into a career.

Here's the trailer for an AS-related film he made at 16. (not captioned, sorry)

Esposito's focus seems to be on history and human rights issues. A new film is planned "We Can Shine - From Institutions to Independence, will focus on the positive changes that have occurred in the treatment of people with disabilities and on self determination in their lives." The documentary is intended to focus on Willowbrook. Sounds like a project that is needed. Much looking forward to Esposito's work in the future!

West Virginia Legislation to Establish Trust Funds

by Kristina Chew

category: Housing and Daily Living

Published July 03, 2009 @ 02:20PM PT

Yesterday in West Virginia, Governor Joe Manchin signed into law new legislation that is designed to encourage the creation of trust funds for the future support of children on the autism spectrum. As reported in Metro News, under the new legislation, families with autistic children will be given a tax credit of up to $2,000 a year for contributions made to trust funds which are to be used when the children become adults; this new legislation is the "first of its kind in the country." Says Barbara Becker-Cottrill, Executive Director of the Autism Training Center which is located at Marshall University in Huntington:

"When you have a child with autism, you've got, really, constant worry about what's going to happen to your child when they become an adult......It's 24/7 concern and, then, the true worry is what will happen to them if you're not there to care for them and love them?"
....
"This bill will provide, not just the tax credit for families in the here and now, but I really think it's going to give our families a sense of security, a sense that the future is a little brighter for their child when they become adults."

That's the kind of forward-thinking legislation one hopes to see more of, for the times when children become adults, when everything isn't shiny anymore.

A Device is Just a Device

by Dora Raymaker

categories: Acceptance, Accommodations and Community Inclusion, Communication

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.

A (Pun-intended) Shot on Division

by Kristina Chew

category: Science and Diagnosis

Published July 03, 2009 @ 12:48AM PT

I haven't yet written here about Dr. Eric London resigning from Autism Speaks. So here goes.......

(Getting ready for being given numerous links to numerous articles, websites, studies studies studies pointing to a "link" between autism and vaccines (there is no link), informing me I'm wrong, and so forth.)

Dr. London was a member of Autism Speaks' Scientific Affairs Committee. In his resignation letter posted on the Autism Science Foundation's website, Dr. London specifically noted that Autism Speaks' position that "there might be rare cases of ‘biologically-plausible’ vaccine involvement" is "misleading and disingenuous." As has been pointed out 'round the internet (here is Newsweek's coverage), earlier this year, Alison Singer resigned from her position as Executive Vice President of Autism Speaks; she specifically cited "concerns about Autism Speaks’ policy on vaccine research" as one reason for her decision. Singer is one of the co-founders of the Autism Science Foundation, along with Karen Margulis London. And, Karen Margulis Longdon and Dr. London were co-founders of the National Alliance for Autism Research (NAAR) which announced it would be "partnering" with Autism Speaks back in February of 2006; a year later, another autism organization, Cure Autism Now (CAN) also went under the aegis of Autism Speaks.

So what's going on?

Leaving aside conspiracy theorizing and attendant superstitious musings, I wanted to reflect on Dr. London's resignation by picking up on a topic that Dora has been writing about, that of the divisions among the professional, parent, and self-advocacy communities.

Like many autism groups, Autism Speaks is an organization with a focus on research and science and the more amorphous concepts of "autism awareness" and "autism advocacy."

Read More »

AS Valedictorian: Be True To Yourself

by Dora Raymaker

categories: Acceptance, Accommodations and Community Inclusion, Legal

Published July 02, 2009 @ 04:14PM PT

The feeds are full of graduation stories this time of year, and Littleton (NH) had a graduation with a message about labels. The Valedictorian referenced his AS in his speech,

"I was born with Asperger's Syndrome," said Valedictorian Christopher Beaulieu during his address. "Being labeled as having Asperger's, I was told I couldn't do things such as telling jokes or giving speeches. Despite those assumptions, I have earned the opportunity to speak here today. I'm saying this because I'd like to make a point about labeling."

He advised his classmates and those in the audience to be true to themselves.

"Don't be a lemming. Follow your own path, even if it means some of your so-called friends might not approve of it," Beaulieu said. He received a standing ovation.

The Salutatorian sent the message in another way--instead of a spoken communication to the audience, she played a song on her clarinet; a medium that was more comfortable for her personally.

Assumptions, labels, and stereotypes are destructive after a point. There are so many benefits to being true to one's self (like an innovative way of giving a speech!). These young people happily have this to guide them at the start of their adult lives.