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New Health Code Would Strip Asperger’s of An Identity

There is an excellent opinion piece in the February 9 edition of The New York Times arguing against my position that Asperger’s syndrome, or AS, should be placed outside the autism spectrum. Here’s my take, based on my experience writing about autism and having a family member with the disorder.

Long considered a high-functioning form of autism, Asperger’s is characterized by having difficulty interacting socially, repeating behaviors, and delayed motor functioning. However, Asperger’s has until recently maintained a separate diagnosis from autism, a complex neuro-developmental disorder defined by impaired social interaction and other behaviors. Beginning with the publication of the Diagnostic and Statistical Manual of Mental Disorders (DSM V) in May 2013, the American Psychiatric Association (APA) has recommended a redrafted diagnosis to include both labels.

The new criteria require that the symptoms begin in early childhood, deficits be measured in social interaction and communication, and there are repetitive behaviors and fixated interests. The full criteria can be found here.

The opinion writer, Roy Richard Grinker, is a professor of anthropology at George Washington University and author of Unstrange Minds: Remapping the World of Autism, and he makes the compelling case that “the change is welcome, because careful study of people with Asperger’s has demonstrated that the diagnosis is misleading and invalid, and there are clear benefits to understanding autism as one condition that runs along a spectrum.” Namely, Grinker cites the fact that Asperger’s can dispel the myth that people with autism do not have intelligence and hidden abilities and that they can have careers and meaningful social relationships alike.

While it’s hard to argue with the hope that Asperger’s can serve to reduce the stigma around autism, I fear this is a naïve claim to make. Cultural discriminations between the connotations of Asperger’s and autism still exist. There is no line in the sand, especially when it comes to school districts, government agencies, and even mental health professionals.

Individuals as well must come to terms with a new way of framing their identity. The Asperger’s Association of New England, an organization with more than 3,000 members, wrote a letter to the APA committee explaining that Asperger’s should remain separate because individuals with Asperger’s “have found AS a term useful in understanding themselves, and in explaining themselves to their families and communities.” Even Michael John Carley, the director of the Global and Regional Asperger Syndrome Partnership, told NPR in an interview: “I personally am probably going to have a very hard time calling myself autistic.”

A full analysis from all viewpoints can be found at the online resource community for autism and Asperger’s, WrongPlanet.net. While the APA is taking public comment before adopting the revisions, I hope you will share your views, whatever they may be.

By Melissa Feldsher

“Poignant” Temple Grandin is a Lens for Autistic Wonders

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I doubt I’m alone in saying I need another tearjerker, disease-of-the-week movie like, well, a hole in the head. Good thing HBO’s recent biopic, Temple Grandin, is no such thing.

Sweet, studied, and poignant, Temple Grandin isn’t about overcoming a handicap, but instead it shows us how to look at the world differently and succeed. The movie’s protagonist, Temple Grandin, is a graduate student who has Asperger’s syndrome, a complex neuro-developmental disorder defined by impaired social interaction and other behaviors.

Symptoms of Asperger’s and autism can include thinking of the world in a highly visual way (Grandin herself likens it to Google Images), which lends itself particularly well to the silver screen. In fact, the diagnosis has recently been re-classified as part of the autism spectrum disorder.

Were this just a tale of one woman just overcoming a diagnosis, I’d probably start to reach for the remote. However, Grandin, played by Claire Danes, is accomplished in her own right as a doctor of animal science at Colorado State University and a prominent consultant to the livestock industry, having designed more than 50 percent of the cattle slaughterhouses in the country. No need to worry: HBO bought a herd of humanely treated cows for the film.

Temple Grandin, played by Claire Danes in the HBO movie.

Temple Grandin, played by Claire Danes in the HBO movie.

Yes, it is through grit, grime, and determination that Grandin has reached such acclaim, but she also credits her unique viewpoint to her understanding of how to humanely treat animals. Perhaps the best example of this is her “squeeze machine,” which plays off the fact that many people on the autism spectrum are extremely sensitive to both touch and sound. She created a device that gently squeezes cattle on the way to the slaughterhouse to reduce their anxiety and nervousness. The machine, as well as Grandin, is profiled in far more detail in neurologist Oliver Sack’s excellent book, An Anthropologist on Mars.

In HBO’s Temple Grandin, Danes and cast do an Emmy-worthy job of making both slaughterhouse engineering fascinating, while making Asperger’s syndrome understandable. From a childhood diagnosis in the sixties — the Stone Age of “refrigerator mother” awareness — to an early introduction to ranch life via her distinctly warm mother, the movie explores both peaks and valleys with a deft hand devoid of Lifetime Channel sappiness.

As the timeline ricochets between present and past, from condescending doctors and callous peers in her hometown of tony Bronxville, N.Y., to a connection with animals and a slow mastery of social skills, Temple Grandin succeeds in conveying a savant who is absent of the shadows of Rain Man, the Dustin Hoffman movie about an autistic adult man. Part of Temple Grandin’s beauty is that the scope of the character’s life, and the skill of Danes, work together beautifully to convey the story of a woman who is really just a lens for a larger understanding of the many types of autism. She does not, as many autistic characters do, serve as a poster child for all those with the disorder.

The real Temple Grandin’s autobiography, Thinking in Pictures: My Life With Autism, purports to get down to the real issues affecting those with autism, and this film does an impressive job of the same.

Temple Grandin will air on HBO for the next few months.

By Melissa Feldsher

For the Deaf, Captioned Tours Wherever You Roam

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Picture this: You fly off to Rome, head to the Coliseum and, using your iPhone, play a video that guides you around the ancient arena where gladiators and lions once roamed. Later, walk across Piazza del Colosseo to the Roman Forum and view a video tour of the sprawling Forum ruins, taking in what was once the center of ancient Rome. If you’re deaf or hard of hearing, you can turn on the captioning feature.

This vision will soon be a reality, thanks to Keen Guides, an up-and-coming Virginia-based company that’s in the process of creating and selling short-format GPS-based video and audio tours for the iPhone and later, BlackBerry and Android phones. These tours — available in app stores — will focus on museums and popular tourist attractions; your phone can recognize the ones nearest to you.

Best of all, Keen Guide’s audio and video content will be captioned for the deaf of hard and hearing. Audio that is created by third parties, such as DC on Foot, will be enhanced with relevant images. Other accessibility modules that will be explored include sign language and cued speech. Down the line, Keen Guides wants to add audio described tours for the visually impaired.

Video: Audio tour of Lincoln Memorial

“All of our content will be accessible to the deaf community, and If I have to hire a staff of captioners, I will,” says Catharine McNally, the founder of Keen Guides who started the company two years ago. McNally, a museum lover who also has been deaf since birth, knows a thing or two about accessible excursions.

After graduating from Wake Forest University in 2006, McNally began developing braille booklets (for the blind) and transcripts (for the deaf) to help make museums more accessible. She took her endeavors a step further when she connected with a Wake Forest alumna, and the two began developing guides on mobile platforms. So impressive is the company’s model, that Keen Guides won seed capital in 2009 from LaunchBox Digital, an early stage investment firm and incubator.

keen people

With smart phones and GPS rapidly gaining mass-market acceptance, McNally and her team see an opportunity to take advantage of these trends. “There will be an increasing demand for immediate, relevant, and local information,” says McNally, “from educational content to local retailers, businesses, and restaurants.”

In April, Keen Guides will launch a Beta pilot in three cities: Washington, D.C., Austin, Texas, and Winston-Salem, North Carolina – cities with high technology adoption rates, strong tourism levels, and significant college and university bases, McNally says. The company has also contracted with Wake Forest and Gallaudet universities to develop campus tours for prospective students and other visitors.

So next time you’re in Rome, make sure you’ve got your smart phone with you, along with the Keen Guides app. With these great downloadable tours, you won’t want to leave home without it.

Related Articles: Q&A with Catharine McNally

By Michael Janger

A Few of My Favorite Things at ATIA

My favorite gadgets at this year’s Assistive Technology Industry Association conference, which featured more than 100 vendors, include two communications products and a new PDA for the blind. I also note some worthy mentions – gadgets that I liked because of their design or originality. Here’s the list.

ECO2

This eye-gaze system brings the latest in alternative input. For people who cannot use their limbs, nor speak (perhaps someone with ALS — Lou Gehrig’s Disease – or a person who has had a stroke), Prentke-Romich’s ECO2 is a great innovation. To calibrate ECO2, I followed a bouncing ball on screen while it recorded my eye movements – this takes all of 30 seconds. The program, a combination of words, phrases and pictures, can be operated using just the eyes, allowing someone to express their thoughts (and their gratitude for this program.) ($7,795)

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Proloquo2go
An iPhone/iTouch app for people who have trouble communicating, Assistive Ware’s Proloquo2go is genius. Founder Samuel Sennot designed the app earlier this year, and it has received rave reviews, particularly among the autism community. Users press icons to express phrases, comments, or questions – and it is cooler and less bulky than a traditional speech-generating device. ($189 plus the cost of an iPhone or iTouch)

BrailleNote Apex
If you’re not blind, you might not grasp the importance of having an all-in-one personal digital assistant strapped to your waist 24 hours a day. Simple tasks, like fishing for a pen or paper to write down a person’s telephone number, can be difficult when you can’t see what’s around you. The BrailleNote Apex is the thinnest (less than an inch) and lightest (less than two pounds) notetaker on the market, and is the latest model to come out of HumanWare’s lab. This PDA takes notes, reads books, plays downloaded music, streams Internet radio, has a web browser, Braille (or QWERTY) keyboard, and makes snow cones. Just kidding on that last one. ($6,195)

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Oratio
From HumanWare and Code Factory comes a the first-ever screen reader for the BlackBerry. It uses state of the art text-to-speech technology that makes the BlackBerry fully accessible to the visually impaired. Oratio is expensive, but there’s a discount for 50 or more license — making it a good choice for enterprise communications where the iPhone won’t do. ($449)

Worthy mentions

ChatterVox
Steven, a rep for ChatterVox, ebulliently demonstrated the power of this human-speech amplification system. While it looks like something you’d see on one of those fake-audience informercials at 3 a.m., ChatterVox really does boost a person’s voice up to xx decibels, allowing him to speak without straining – with no auditory feedback. This product is designed for those who can’t speak very loudly due to weakening vocal chords (many people with ALS have this condition). It also looks like it would come in handy for CEOS and teachers. ($285)

Optelec Compact Mini
Sure, you could just use a cheap magnifying glass to read those restaurant menus, but this thing is cooler. The Optalec Mini video magnifier is as small as an iPod and can increase font sizes up to 11 times with the press of a button. The FarView, its larger counterpart, has a built-in camera; take a snapshot of a far-away sign –- say, the train schedule at Grand Central station – and zoom in. You’ll catch your ride, without looking like Sherlock Holmes. (£295)

Read a 2009 New York Times article about the Optelec Mini.

optelec

Disability T-Shirts
I was hoping for edgier slogans, but these T-shirts from Dare2Dream were selling like hotcakes. Teenage boys had a preference for the black T-Shirt that read, Attitude Is The Real Disability. Rock on. ($12)

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ATIA has officially come to an end. Dynavox Mayer-Johnson broke down their exhibit village. The communications device company showcased their popular V Max speech-generating device, which also has an eye-gaze version.

By Suzanne Robitaille

Speech Recognition for the Deaf in the Workplace

NaturallySpeaking10

I didn’t get to too many workshops at the Assistive Technology Industry Association conference this year, because I only attended for one full day. I did stop into a presentation on speech-recognition for the deaf, led by Ed Rosenthal, CEO of Next Generation Technologies, a consulting firm.

Rosenthal is a certified partner, and been working for 20 years, with Nuance Communications Dragon NaturallySpeaking software, and says that the technology had its first real breakthrough about three years ago when it debuted its latest version — 10 Preferred ($199).

Now, Rosenthal says, he believes the speech-to-text program works well enough to be used as a real-time captioning tool for the deaf in the workplace. The Dragon program is said to work “three times faster than most people type, with accuracy rates of up to 99% right out of the box.”

In a demonstration, Rosenthal opened up a Word document and began speaking (into a wireless mike) at about 120 words per minute, pretending he was an executive at Toyota. Taking a page from the news – Toyota recently recalled 2.3 million cars — he spoke to a roomful of “Toyota salesmen” about the carmaker’s issues. The entire “meeting” was translated to perfection, with the exception of one line: “I’ve instructed all of our sales agents to stop selling our eight models until the Hollywood acceleration can be solved.”

Hollywood? Rosenthal quickly pulled up a word correction tool. The final document then read: “I’ve instructed all of our sales agents to stop selling our eight models until the problem with acceleration can be solved.”

Of course, Rosenthal (a has created an extensive profile for his voice, but says it takes around 20 minutes for anyone to set up a profile, which is done by reading a story out loud so NaturallySpeaking 10 can capture the speed, tone and inflection of a user’s voice.

Rosenthalsays he believes that for ad hoc meetings when an interpreter isn’t available for a deaf person, or if a hard of hearing person just wants some visual support at a meeting, then NaturallySpeaking can do the trick just fine.

I agree, that even with small mistakes, a person with a hearing impairment would welcome any kind of text to supplement a conference or meeting. I asked him about virtual conference calls – could an executive conceivably use NaturallySpeaking and push the text out via an instant message program? Rosenthal wasn’t sure, but he thinks it’s possible. At the very least, the executive (or his secretary) can email out a transcript of the call after it ends.

NaturallySpeaking works in Word, Excel, Corel WordPerfect and most other Windows-based applications. The Professional version ($899) is more ideal for the workplace because it also works in PowerPoint, Lotus Notes, and Microsoft Outlook. Either way, both versions can take advantage of corporate speak and save it in your profile. That’s great for when the boss needs those TPS reports by noon.