TPGA editor Shannon Rosa was invited to participate as a parent and blogger resource based on her autism-specific iPad advocacy work, and found the event so incredibly positive that she'll be covering it in two separate posts. Today covers the opening talks by the hackathon's advisors, their specific takes regarding autism and technology.
The apps developed at the App Hackathon will be posted at HackingAutism.org as they are finalized over the next few weeks. Those interested in hosting or getting involved with a hackathon should contact Random Hacks of Kindness, RHOK.org.
A primary force behind the event was Phil McKinney, Hewlett-Packard's Chief Technology Officer, who said, "he didn't want to donate equipment or money. He wanted to work on something that would have real impact." He got involved after his speech therapist daughter did volunteer speech therapy work in Rwanda, and it was discovered she and her partner had become the only speech therapists in Rwanda. Some families drove two hours just to get a chance to meet with the pair of SLPs! This really touched McKinney, profoundly and emotionally, and bolstered his determination to bring resources to underserved disability communities.
When the Hackathon was announced at Maker Faire in May, the response was phenomenal, and continues to expand -- now autism Hackathons will be happening in New York City, in the UK, all over.
The hackathons are all-volunteer effort. The goal is to create tools that can help people with autism communicate, and contribute, and help the development community understand exactly how they can help people with autism in everyday life.
Chris Chirco from the Doug Flutie Foundation emphasized that his organization's focus is on supporting autism families, not on research and treatment. He said that autism families have lots of expenses, but limited resources -- that is why events like App Hackathon are so important. Volunteers are critical.
Andy Shih from Autism Speaks talked about his organization, about "what autism is," and what role technology can play for autism families. He wanted the Hackathon developers to understand that autism is idiosyncratic, and that as a result we need to talk about autisms, rather than autism.
Autism Speaks research includes autism prevalence, early detection/diagnosis, sibling rates, behavioral and pharmaceutical intervention. They are starting to invest in global prevalence studies, e.g., the Korea study. Autism doesn't just happen in the developed world.
How can technology make a difference? Tablets like iPads are affordable, portable, have predictable structure, are great for visual learners.
|Hackers don their white hats at the autism App Hackathon.|
photo (c) Steve Silberman
Bell considers PDD to mean "Physician Didn't Decide," and emphasized that autism is a spectrum disorder. He gave a nod to Stephen Shore with the saying, "If you've met one person with autism, you've met one person with autism."
He says autism is now ubiquitous, particularly on the political stages; there's also a strong media interest. It is also one of only three conditions recognized by the UN, in terms of having its own World Awareness Day
There is tremendous benefit to diagnosing autism early as possible, yet diagnosis age is around age four, and it's later for minority populations. This is a serious problem in terms of getting people with autism and their families the proper supports and resources. Plus 500,000+ children with autism will become adults over the next decade. They will need transition and workplace supports.
People with autism need to have a voice. And we need to listen to Autistics themselves, not just their parents. We especially need to remember that being non-verbal doesn't mean that you can't participate and communicate.
The whole goal here is to improve quality of life for people with autism
Shannon Kay is Executive Director of the May Center for Child Development, a school for children with autism. She talked about the impact of technology in a school with 1:1 instruction based in Applied Behavior Analysis (ABA) principals.
How technology has benefited students: it supports communication and data collection; it diversifies teaching tools; it's a versatile reinforcer [motivating item or tool]. The students that do the best with high tech devices tend to be those who have done well with low-tech systems like PECS. They also tend to have strong prerequisite communication skills, e.g., good matching skills, and have outgrown low-tech. But you can't just throw a tablet in front of a kid and say "hey, talk to me." Parents and teachers need systematic training,
The benefits of tablets and other communication technologies: They allow for easy access to a wide vocabulary, and they are portable. They also provide voice output, which can give Kay's students a voice that is more easily acceptable in the community; that value is immeasurable. Technology can be a bridge between the kids who use it and their typical peers.
Tablets are not a communication panacea, especially if kids have behavior and motor-control challenges. Some students will truly continue to need a dedicated non-Tablet communication device. But Kay is hoping that the introduction of a more efficient communication system can help reduce problematic behaviors.
Computers make great teachers for many kids -- they are consistent and predictable. They also make it possible to have quick two-second [ABA] inter-trial rewards, which results in much quicker learning. People can't move that fast to provide rewards between ABA trials without lots of training.
Technology/computers can make choosing rewards much easier and more flexible. Especially when customizable predictable content is available! Technology/tablets are also versatile reinforcers, they can compete with self-stimulatory behavior, or "stims." This high motivation provides rich opportunities for language development, beyond requesting and into commenting! Even for older kids and young adults. (Kay showed a video of a seventeen year old who had only recently developed commenting language -- which is social, as opposed to requesting language, which is not so much -- and did so using tablet technology.)
|Will Pate from Random Hacks of Kindness|
Addresses the Hackathon participants
photo (c) Steve Silberman
It's important to build tools that matter, not the first thing that comes into your mind. Open source technology can create the framework. But -- you have to work with the experts. Technology can't solve problems on its own. You have to ask questions, and seek early/often feedback.
It's also important to investigate potential licensing and copyright before jumping into any philanthropic hacking/coding/development endeavor. Make sure you check your employment contract! Your work might belong to your employer.
On getting started: first steps: assess team, make sure you have everyone you need down to testers, documentation, QA.
How do we build an entire app in a day? That's not the goal. The goal is a minimum viable project for testing and feedback.
On Wednesday 10/19, Shannon will report on the experience of attending and participating in the Autism App Hackathon.