A sneak peak at Tony Gentry's findings and some exciting
implications
Last month Tony Gentry, director of the Assistive Technology
for Cognition (ATC) Laboratory at Virginia Commonwealth University (VCU),
enrolled the final two participants of a 50-person randomized trial on PDAs as
vocational aids for adults with autism. The study is funded by the National
Institutes on Disability and Rehabilitation Research (NIDRR), and involves a
range of participants with autism (from those who do not speak to those who
experience, primarily, social obstacles).
Although the data won't be fully crunched until the spring, the results
are already proving significant: "Of the participants in the study,"
Gentry reports, "all have learned to use these devices, all have continued
to use these devices, and all have required less vocational support than they
would have without these devices."
Across the country, Vocational Rehabilitation agencies
provide supported employment services to persons with intellectual
disabilities. Job coaches help persons with cognitive differences learn
routines and tasks and problem-solve the social and behavioral challenges that
may come up at work. Gentry believes his data will demonstrate that a $200
smartphone or iPod Touch can save hours of these services (often billed at
$50/hour). "It won't put any job coaches out of work," he reassures,
"because they are already so overworked, but in the future more people
could be served, and the supports will be more effective."
VR agencies are sure to take notice of these findings,
particularly with devices that require such a relatively small investment.
However, the vocational benefits to deploying PDAs with persons with
intellectual disabilities may be just the tip of the iceberg for what's
possible. Indeed, Gentry has found that for some individuals, using simple
strategies with PDAs helps broaden horizons far beyond the workplace.
Riding that tiger
Gentry’s fascination with PDAs dates back to 2000, when he
directed a community reintegration program for persons with brain injuries.
There he used memory books with clients to help with basic routines for daily
living. Memory books--small photo albums showing a sequence of tasks--can be
very effective. But at the brain injury program, Gentry says, he often came up
against a limitation, "No one would remember to look at them."
The agency, however, was well-resourced. So when a
psychologist on staff purchased a Palm Pilot for his own use, it caught
Gentry's attention. The Palm Pilot (then about $500) had a reminder-alert
feature. "I remember thinking this is what's been missing!"
At Gentry's prodding, the program's medical director
eventually purchased five Palm Pilots to trial with clients. One client, a
lawyer, took to the slick device right away. “So I asked him what his wife most
nagged him to do,” Gentry says, “and then programmed it with audible reminders
for those daily routines.” Gentry learned of the success of this strategy at
the next staff meeting. “His wife barged in on the meeting (usually not a good
sign…) She wanted everyone to know how that PDA had changed her life!"
After this experience, Gentry wrote a grant, and then a
dissertation "So I've been riding that tiger ever since." Today as an
associate professor of occupational therapy at VCU he tells all his students,
“In helping your clients, when you see something that works, grab it!”
Some basic apps and that one nagging question
Gentry says the most difficult aspect to his work at the AT
for Cognition Laboratory is the pressure he feels to keep up with quickly
evolving technology. Yet he also stresses that the vast majority of his
research participants benefit from just a few basic apps, most of which come
already built in to their devices. "Everyone in the study has a work
folder with the Reminders app, the Clock app, and maybe one or two more, to help
them stay on task during the day."
Equally simple is his message for how to deploy a PDA.
"We use assessments, etc., but what it comes down to, really, is the
question I first used with the lawyer at the brain injury program: what are the
things you most get nagged to do? And we build our adaptations from
there."
In 2012, The Journal of Vocational Rehabilitation published
three case studies that Gentry and his colleagues gleaned from the NIDRR-funded
PDA trial [1]. The cases detail how job supports are successfully provided
using task lists, audio or video recordings, Clock reminders and other apps. In
one example, Jeffrey, a young man with autism, used an iPod Touch to support
his janitorial work at a fast food restaurant. His occupational therapist
scheduled Clock reminders with different sounds to cue him to review task notes
(both audio and visual) and move him through his responsibilities. Jeffrey, we
learn, readily adopted the device and used it successfully after just one week
into training. He enjoys it, takes care of it, and is apparently so reassured
by what it provides him that he no longer exhibits self-calming behaviors
stereotypical to autism (such as spinning in place and humming). A year later
his manager reported, "[Jeffrey] is methodical, hardworking, thorough, and
we’ve even caught him sharing a smile with the line cooks now and then.” All of
this is accomplished with the Touch's built-in apps.
In another case study, Grace, a 60-year old woman with
autism and mild cerebral palsy, uses her Touch in a similar way at a clerical
job. Clock reminders help her to switch or complete tasks, and custom-made
videos are her way-finding tool for the workplace maze. But unlike Jeffrey,
Grace also uses her Touch to get to work, deploying apps as tools to empower
problem-solving for issues that had begun to make her commute dangerous. Her
Touch reminds her to go to the bus stop (Clock app) and phone the
transportation company if her bus is late (Contacts app). Music and podcasts of
favorite radio shows help her to stay calm while waiting, and a custom-made
video (Camera app) models what waiting should look like and how to call her employer if she will be
late.
Grace's job coach, Stephanie Lau, trains Grace to use these
tools to manage her commute successfully. Particularly helpful is the
video--which they made together--featuring Grace waiting safely for the bus. By
reviewing the video when she feels anxious, Grace no longer steps off the curb
to look for the bus (or leaves her pocketbook on the bench to do so).
Remarkable affordable transformations
In some cases using basic apps deployed in these simple and
thoughtful ways has a dramatic and motivating impact on users. "What I
really love," Gentry says, " is how when people are in control of
remembering to do things--managing their tasks, not having to get nagged all
the time by a supervisor, job coach or a parent--there's a self-efficacy piece
that kicks in. It's true for any AT, but it's especially wonderful to see with
a device that is so inexpensive and readily adapted to people’s needs."
Indeed, the media has paid generous attention to the
benefits of the iPad and iPod Touch for some individuals with autism. But this
attention has focused on apps for augmentative and alternative communication
(AAC), and the iPad as an academic and social skills learning tool. Outside of
communication, little notice has been paid to the potential consumer technology
has for helping adults with intellectual disabilities or autism achieve new
levels of self-agency (perhaps because that story has yet to break). Gentry,
however, has witnessed some remarkable transformations.
His favorite example is not actually about a study participant,
but a woman he met early during the course of the project. "Ann," age
32, has autism and an obsessive compulsive disorder. Gentry is introduced to
Ann at a group home by the home's manager. The manager knows Ann is not ready
for employment, but hopes Gentry can help her anyway; after all, she already
has an iPhone, which she uses to check the weather and repeatedly call her
mother. Indeed, when Gentry speaks to Ann, he learns she talks to her mother
for upwards of five hours each day, calling to ask for guidance on what to do
next. It was a situation that was draining to them both.
Gentry says his goal became, "How can I keep Ann from
calling Atlanta?" His answer is to make video recordings with iPhone’s
built-in Camera app. Instead of calling her mother for reassurances, Ann could
learn to make and play videos of her mother talking to her about key issues
that bother her during the day.
Ann took to the strategy right away, relying on the videos
for guidance, instead of phoning her mother. Eventually Ann began making
recordings of herself, providing the inspirational self-talk she knew she'd
want in insecure moments. And finally her need for recordings faded altogether.
"She learned to self-talk," Gentry reflects, "which is what we
all do, really. She internalized the messages."
For Ann's mother the experience was so life-altering that
she came up from Atlanta to visit Gentry in his office. "She talked for a
half an hour about all the thousands of dollars they'd spent trying to help her
daughter and how nothing had helped like the iPhone videos. She wanted as many
people to know as possible."
For Ann, the experience was like moving through a portal to
a new life and new self-understanding.
"It was like a test case in the power of
self-efficacy," Gentry emphasizes. "Once she regained all those hours
she had spent on the phone, she began asking herself, what else can I do? What
do I want?" Ann has since moved out of the group home and today lives on
her own. She is learning community living skills with an occupational therapist
and uses her iPhone to meet each new challenge. “She uses videos for finding
her way from her home to the grocery store. She uses apps for grocery shopping,
apps for how to interact with others, apps to help remember people’s names and
things. Watching her evolve has been amazing. We learned a lot from Ann about
how these tools can help."
Of course there are many apps on the market for behavioral
management and reducing anxiety. But a key lesson Ann taught Gentry is that
when it comes to receiving instruction or reassurances, often nothing works as
well as the voice and/or face of a loved one (or at least that of your own
therapist), and personalized video clips make that possible on PDAs. It's a
lesson the AT Lab later applied for the benefit of Jeffrey and Grace and many,
many others. (Needless to say, Ann's mother is thrilled).
The emerging landscape: every day AT, everywhere, for
everybody
During the five-year period of this study there have been
some dramatic changes to the technology landscape and cultural shifts as well.
Gentry's funding began in 2008, a year after the release of the first iPod
Touch, a year before the first iPhone, and during a time when many service
providers still wondered if adults with autism were even capable of learning to
use or care for PDAs. Now, as the study is wrapping up, the consumer mobile
tech revolution is in full swing, and autism awareness has broadened and
deepened most professionals' understanding of the autism spectrum and community.
But back in 2008, it's likely few would have predicted Gentry's dramatic
outcomes for vocation, never mind a story like Ann's.
Today smartphones are becoming ubiquitous. And for AT
adoption, this development may be just as powerful as the original Apple "cool-factor."
Mobile tech devices are not only what everyone wants (dissolving the stigma of
AT), they are also what everyone has. "Handheld devices are becoming a
part of the everyday landscape, like a pair of glasses," Gentry observes,
"and because rehabilitation professionals now have smartphones themselves,
teaching them to use them with individuals is very easy." They are happy
to install apps, and they know how to do it. "It wasn't like that three
years ago," Gentry chuckles, "but it is now!"
Learn more from Tony Gentry about video modeling and other
AT at this VCU Autism Center for Excellence (ACE) Web page.
____________________
1. Gentry, Tony; Lau, Stephanie; Molinelli, Alissa; Fallen,
Amy; Kriner, Richard. “The Apple iPod Touch as a vocational support aid for
adults with autism: Three case studies.” Journal of Vocational Rehabilitation
37 (2012): 75–85. Print.
