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Posts Tagged ‘technology’

Collaboration, technology and making things

September 19, 2011 5 comments

This post is by Marc Sirkin, Autism Speaks Chief Community Officer. He spent this past weekend with Autism Speaks staff and a few incredible volunteers at Maker Faire NYC, a DIY conference that featured among other things cutting edge 3D printers, a wheelchair transport vehicle, a life sized mouse trap and a solar powered Carousel. He spent the weekend in a state of surprise, awe and laughter.

Creativity, innoviation and outlandish ideas are alive and well at something they call “Maker Faire.” Autism Speaks, as part of HP’s Hacking Autism initiative had the incredible opportunity to have a booth this past weekend at the event, held at the New York Hall of Science. If you are unfamiliar with Maker Faire, it is the premier event for grassroots American innovation. As the World’s Largest DIY Festival, this two-day family friendly Faire has something for everyone – a showcase of invention, creativity and resourcefulness and a celebration of the Maker mindset.

Basically, it is where kids of all ages go to make and build stuff. You can learn to solder, get a basic understanding of electronics and programming and for the rest of us, it’s an opportunity to get a very early glimpse of what’s to come.

As it relates to autism, it’s an incredible outlet for those interested in math, science, computers, programming and with building things. The Hacking Autism project, which we’ve blogged about before is the perfect blend of what’s great about Maker Faire and the response we got was absolutely incredible. Hacking Autism was launched in June 2011 to seek new ideas for technology applications beneficial to people with autism. Hacking Autism crowd sourced ideas for applications from all across the autism community, including families and practitioners. As demonstrated by the above concepts, the Hacking Autism initiative sought technology-based ideas to open up learning, communication and social possibilities.

After two live web chats (First, Second) the advisory committee selected some of the best ideas which Phil outlined in his talk. You can get a preview of some of the top ideas selected in the official press release.

We met family after family that had connections to the autism community; parents, caregivers, teachers and those on the spectrum themselves. We were blown away by their stories and their need for additional help, services, and software. They were thrilled with the possibilities and the innovation of Hacking Autism.

As I wandered around, I talked to people about autism and technology and met people from different companies who all had connections to our world and to our cause. We made new connections, got new ideas and were inspired by our time there. In the end, as we were packing away our materials and getting ready to head home, we learned that our booth and Hacking Autism had won and editor’s choice blue ribbon – apparently a very big deal! I of course snapped a pic and tweeted it immediately!

In thinking about our time at Maker Faire and the coming hackathon, I’m even more encouraged and inspired to push ahead in these new areas to find new connections, to keep learning about autism and to ultimately find new ways to make a difference for all those touched by autism.

P.S. Joey Hudy stopped by our offices on Friday and was featured at Maker Faire with his 3x3x3 cube technology. Joey is a “maker” and describes himself in the following way on his website, where he sells his creations: “I’m a 8th grade boy. I have Asperger Syndrome. I spend all my time building and making cool stuff.” Follow him on Twitter and visit his website

Hacking Autism LIVE Chat Transcript

September 7, 2011 2 comments

On September 6, the first Hacking Autism LIVE Chat was held, where members of the Advisory Board discussed ideas submitted by the community.

The Hackathon event will bring together Hacking Autism’s Advisory board, experts in Autism, technologist and people on the spectrum. This catalyst event takes the ideas submitted to the Hacking Autism website to a multidisciplinary group to actually create applications for people to use free of charge.

The next chat will take place on September 13, please be sure to join here!

7:02
Welcome to the first live chat for the HP Hackathon!
7:03
This chat is text only – you’ll interact with us via the live chat client that you are logged into at different times. We have a special group of our advisors also on the chat with us – and we’ll introduce them in a a few moments.
7:03
The Hacking Autism Hackathon has pulled together a volunteer group of software developers with leading autism specialists to work together to develop groundbreaking, touch-enabled applications for the autism community.
7:04
Tonight’s chat is all about improving a few of the best ideas and creating a conversation with you about this program. This is the first of our 2 scheduled chats.
7:04
In mid-October, we’ll be at HP offices for the live hackathon, taking the best ideas and matching them up with volunteer development teams to actually build the apps you’ve submitted!So far, we’ve had some 245 ideas submitted! Thank you!
7:05
Have you submitted an idea to hackingautism.org yet?
Yes!

 ( 35% )

No, still thinking of a good one!

 ( 65% )
7:07
How tonight is going to work…The first part of the chat will be fairly structured… we’ll show you 3 separate ideas, and for each idea ask you a few questions and then start to brainstorm on how to improve the idea. More on that in a moment…Meanwhile, I’d like to briefly let you know who you’ll be interacting with tonight from our advisory committee…Phil McKinney with HP
David Canora with Disney
Marc Sirkin with Autism Speaks (and the fast fingers, I’m doing the typing tonight)
Peter Bell with Autism Speaks
Shannon Kay with May Institute
Kate Grandbois with Spaulding Outpatient Center for Children
7:09
Ok, great… here’s how tonight’s chat will work:First, we will present an idea and ask via interactive poll if it is clear what the idea is…Then, we’ll ask for feedback and input on the idea (i.e. do you like it, or not) via another short pollFinally, we’ll brainstorm a little on some good features – just submit your ideas and questions when we prompt you and we’ll share responses with the group as we go…Ok… are you ready? Here’s the first idea…
7:10
Idea 1 Stress Thermometer
7:10
Comment From Quinton Hall

I have a 12 year old brother that has autism like symptoms. What type of applications are available for him. I have been a very important role model in his life thus far.

7:10
Hi Quinton! It is great what you are doing and your brother is lucky to have you. We can send you two place. Autism Speaks has recommended Apps herehttp://www.autismspeaks.org/family-services/resource-library/autism-apps
or you can visit the Hacking Autism App Gallery here -http://www.hackingautism.org/apps
7:11
There were several entries submitted for this concept including:An ap that brings calm for autistic children when they are at high stress level or burn out. Something visually calming- with sounds that calm perhaps starting at a louder volume and automatically slowing down and quieting as their stress level subsides.I’d love to see an app that‰Û_tells caregivers- who do not know about autistic behaviors- how to see the signs of upcoming stress and inturn meltdowns- that are happening to our kids- and how to avert them. IE: a child is clenching their fist…that means they are rageing inside and will be heading toward a meltdown. If we can avert them they will be less. It is called Rumble- Rage and Recovery. We never want the Rumbling to reach the Rage stage.I would love to see an app that allows someone with Autism who is nonverbal to communicate their level of stress and anxiety…a “stress thermometer” where they could mark with their finger their level of anxiety.Take a moment to read the submissions…
7:12
Do you understand the basic concept of “Stress Thermometer?
Yes

 ( 73% )

No, it’s unclear

 ( 27% )
7:13
Do you like this idea?
Yes love it

 ( 67% )

Unsure

 ( 33% )
7:15
Ok.. now it’s your turn… submit ideas to improve the idea, or ask questions!
7:16
“Guest” asked for some more details about this idea… basically, it’s a way for to help someone communicate an absract idea of stress.
7:17
Comment From Guest

The concept of a stress thermometer seems clear enough, I could use one of these myself, and maybe autistic folks could use one for other people. But what would it actually do?

7:19
A stress thermometer could be used as a replacement behavior for inappropriate behaviors (for example, replace aggression with using the “I’m angry” setting. The app could track the usage across times and situations.
7:19
Comment From Betty

Will this thermometer change colors as the person’s mood chsnges??

7:19
Comment From Joeliene

Would this be done through a series of icons almost like emoticons that the child could indicate an emotion or what they are feeling at the moment?

7:19
Joeliene – sure! Great idea.
7:20
Comment From Guest

I like the concept…. and having a way to demonstrate the stress level could be helpful.

7:21
Comment From Valerie K

We use colors, each identifying the stress level. Green=1/calm, blue=2/not so calm, Yellow=3/aggitated, Orange=4/frustrated, Red=5/MAD

7:21
Valerie – excellent!
7:21
Comment From Ronnie

Could it be personalized? perhaps with visuals that are used in their daily life or would they need to be training on this new visual?

7:21
Comment From Cindy

I like the idea!

7:22
Comment From Calebs Mom

agree with Joeliene I Can see that idea working

7:22
Ronnie – Peter Bell from Autism Speaks added that perhaps we could even license characters for the thermometer – Power Rangers, Pokemon etc… Very cool :)
7:23
Comment From julie hudy

Ronnie – cool idea :)

7:23
Ok everyone… let’s transition to the next idea… idea 2 Bullying “Lifealert”I’d love to see an app that‰Û_can protect our children from Bullying! This APP can be a direct message to the school of any incident any time. May be we can even efforce schools to pushish bullying just like they would do for any other asault. “Super B” will enable our kids to feel protected at all times and send a message with names and specific situations to the school and hopefully a copy to their parents. My dream would be fro every teacher to say on the first day of school….Please download “Super B” and use it any time! We will make sure your confidenciality remains protected and Bullyest be held responsable!!Thank you for your consideration!I’d like to see an app that provided children (particularly middle school children) with examples of how to address comments from bullies. I am currently working working towards my Masters degree in speech pathology and Florida State University and help run social skills groups at the Center for Autism and Related Disabilities (CARD) in Tallahassee- FL. In working with middle school-aged children- they have shared with me numerous times that the concepts they learn they can’t apply. They tell me that in middle school “if you’re not cool- no one will talk to you”. So many times- the concepts we teach them- they are not even able to practice because they already feel like they don’t fit in and do not communicate very often to similar age peers. When they do initiate conversation- however- they get made fun of or picked on. I think having an app that can demonstrate appropriate ways to respond to such interactions can be very beneficial and provide concrete examples. This may be done through a combination of a social story with text for additional support and details.
7:23
Take a moment to read…
7:25
Do you like the idea of a lifealert type service for bullying?
Yes

 ( 87% )

No, not really

 ( 13% )
7:26
Comment From Mark Anthony

I love the Super B idea. I worry all the time how my son will deal with Bullying in Junior High.

7:26
What questions or suggestions do you have for this concept?
7:26
Comment From sean

bullying is a reality and anything that can helpful like an application would be beneficial and maybe be intoduced to school

7:26
Comment From Rachel

I love the concept, but unclear how it would help / what it could do.

7:26
Comment From Betty

Yes I LOVE the Super B idea!!!

7:27
Rachel – a simple app with social stories and perhaps even a way to alert teachers/aides about how to respond to bullies
7:27
Comment From Steve-Aspie_Dad

Bullying “Lifealert” – We need more anti-bullying awareness and prevention. Anything to help protect our children would be appreciated greatly!

7:28
Comment From Lynelle Majors

good idea but how can we actually get our kids to use it…. my son would never do it.

7:29
Lynelle – not sure to be honest! That’s why we’re brainstorming about the concept. Some kids might not want to “tattle” but in some situations it could be useful.We’re also wondering if this app could also include “social” stories to help kids learn how to handle different situations.
7:30
Comment From Lindsay

Bullying I think might always be an issue for children with disabilities! A lifealert system would be a great idea!! Expecually since theres alot of autistic children who don’t talk or can’t express they’re feeling or whats going on outside the home

7:30
Comment From Suzi

I think the idea could be a great tool – especially if it offers both a way to alert others – i.e. track occcurances & gives social stories for possible responses.

7:30
Comment From Sherry

My son is in Kindergarten and is already being picked on by kids on the bus

7:31
Comment From Andrew

Thats an amazing idea. I have Aspergers, and I’m quite High Functioning, and the symptoms aren’t there anymore for me, but yes, I think this is a great idea for those who are low-functioning.

7:31
Sherry – that’s terrible. Please alert your school officials!
7:31
One of the things the app could also do is educate parents on how to address the issues, explain their rights and more.
7:31
Comment From Keith Ringled

Would this be an alert that is immediate. So that personel can respond when incident is happing?

7:32
Keith – ideally.. yes!
7:32
Comment From Nexus

i think it may be a good idea, however I see great means of abuse to come from it.

7:32
Another benefit could be tracking both for individuals as well as across a geographic area, school or district.
7:32
Comment From Kelli

would this app be affordable?

7:32
Comment From Darcy

I think that in some instances it could be great. Even if used only when telling is trully needed.

7:33
Comment From Nexus

now are we talking about online bullying or real life bullying

7:33
Nexus – potentially both actually.
7:33
Comment From Calynn

That would be great… I love the idea. My sister gets bullied and she has ASD so i think this is a very useful app

7:34
Comment From Guest

if it were immediate it would be hard to abuse…because officials can respond right away

7:34
Comment From Jerry Scott

Most Jr. High Schools that I’m aware of don’t let kids use phone during the school day – immediacy would be a problem. An app that walked a kid through a re”port of bullying “time, place, etc” might be very useful to get an accurate picture of what happened.

7:36
Jerry – great point although it is possible to get a device like an iphone or ipad written into an IEP accomodation.
7:37
Comment From Sonia

how would this app work for a kindergarten student?

7:38
Comment From donna

I would also like to see the app have features available to teachers, (especially general education teachers) to use to educate/inform their general ed students about how to accept others that are different (those with ASD). If we help to teach awareness and spread information it might cut down on bullying due to misunderstanding.

7:38
Sonia – good point – there is no universal solution to any of these apps!
7:38
By the way.. if you have app ideas…. please submit them at www.hackingautism.org
7:38
Ok… let’s go to idea #3… Storyboarding/Social stories
7:39
I came across a realy cool p[rogram through my6 sons speech therapist. Its for easy story boarding. YOu can use there pictures or your own- including photographs to make a quick story board or evets calender for your chyild. Might be cool to inlude one the kids could use themselves to show us what they want or need.An app that will enable me to write social stories on the fly on my son’s iphone.I’d love to see an app that‰Û_easily allows parents and therapists to create social stories based on a combination of “packaged” pictures and personal photos. It would provide a template for pages with a drag and drop interface to allow the user to develop the story and add appropriate text. It would then be viewable as a sort of slideshow or could be printed. My grandson LOVES his IPAD- so it would be nice if it ran on the IPAD as well as PC systems. A really great addition would be a library of animated icons or pictures to help make the story lively.
7:39
Comment From Leah

Definitely needs to be tailored to different ages.

7:40
Do you understand the basic concept of Storyboarding/Social story
yes

 ( 84% )

no

 ( 16% )
7:40
If you were wondering…. the ideas submitted were copied and pasted here – we didn’t change a thing!
7:40
Comment From Michael Needleman

You could build the app to age appropriateness. One interface for kindergarders, another for middle school, another for high school. Becoming more complex over time.

7:42
Comment From Leah

The storyboard app is an excellent idea. Parents go crazy taking photos and laminating and printing.

7:42
Comment From Suzi

Love this idea!

7:42
Comment From Jerry Scott

I love this idea – if my daughter could select a situation from the screen and then review the story board – it would really help her get through a lot more situations on her own.

7:43
Comment From Lynelle Majors

I think it would be great if the kids could input their own situations and stories….my son has a hard time telling the difference between that actually happened and what he wanted to happen

7:43
Have created your own storyboards?
Yes

 ( 54% )

No

 ( 46% )
7:43
Comment From Keith Ringled

I Struggle as a creative person. I sometime find it hard to put together a social story on short notice. This could be benificial. If the pictures and stories get to generic I know my son would lose interest.

7:44
Comment From donna

It would be good if there were a combo of pre generated pics as well as you can upload/use your own photos. this would make it most relevant

7:45
Comment From Ann

I like Donna’s idea of both generic photos and uploading your own.

7:45
Comment From Guest

The ability to search the internet for images would be great

7:46
Comment From Michael Needleman

Adding location awareness to the app so it would present pictures based on physical location might be a cool feature.

7:46
Comment From Jerry Scott

Maybe we are limiting ourselves in this concept a little – with the video cameras on the phones/pads, why have a story board when you can have a “Social story video”

7:46
Jerry.. yes!
7:47
A bank of good “pre-fab” examples would be great, and then you could replace/edit them with your own images/videos…
7:48
Comment From Jerry Scott

I picture taking a video of my older daughter brushing her teeth the “right way” then having it play while my daughter with autism brushes hers

7:48
Comment From Guest

Having the ability to share your story via email or social networking is also fantastic

7:48
Comment From donna

Great idea Jerry! I enjoy that a lot

7:49
Comment From Ronnie

Jerry that sounds great! But I do think social stories on boards have a place. I had a student who got too caught up in the “business” of a video (whether he was in it or not) and really needed the organization of a 1-2-3-etc picture story

7:49
Comment From Suzi

If video were used, my daughter would likely be upset if the reality didn’t match exactly.

7:49
Ronnie – perseveration is a real issue to consider. You are right.
7:49
Comment From Jerry Scott

I think the ability to share the user-generated content with many of these apps will be one of the most important features. As parents and caregivers, none of us has the time we would like to spend developing these types of things.

7:50
Jerry – amazing concept!
7:50
Sharing social stories with each other, and allowing people to customize them on their own devices, and share them back again. Terrific.
7:51
Ok, let’s transition to some open discussion and questions… submit any questions or comments you have now! We have about 10 minutes left…
7:52
Comment From Joeliene

What is the timeframe on development of an app – once the hackathon is complete?

7:53
We can send you two places! Autism Speaks has recommended Apps here http://www.autismspeaks.org/family-services/resource-library/autism-apps
or you can visit the Hacking Autism App Gallery here -http://www.hackingautism.org/apps
7:53
Joeliene – great question… it all depends on the complexity of the app
7:54
Also, developers are donating their time and efforts!
7:55
Comment From Jerry Scott

I am wondering if we could use computer science students to some of the development. Could we structure the app development in such a what that professors could offer chunks to their students to do as projects?

7:55
Jerry – we’re using professional developers to ensure we’re building quality apps
7:55
Comment From donna

how often are those resources updated with newly found or newly created apps?

7:55
Comment From Guest

price range on the apps?

7:56
Guest… all free!
7:56
Comment From Joeliene

And, then how will they be made available at large – for purchase, free, iTunes

7:56
All depends on what actually gets built!
7:57
Comment From Rachael

have you considered a panel of older ASD individuals to give ideas that would have helped them when they were younger?

7:57
Rachael – John Robison is part of our committee and yes, we’re always looking for suggestions and ideas.
7:58
Wow, that was terrific! We’re going to have to wrap the chat up now… THANK YOU for participating!Next week, we’ll hold another live chat – same place, and same time, 7pm EST with more ideas and more time for discussion.Meanwhile, if you are in the NY/NJ/CT area on Sept 17 and 18, we’ll be at Maker Faire… stop by if you are planning to attend and watch the Autism Speaks Facebook/Twitter/web site for information and volunteer opportunities.
7:58
Comment From Jerry Scott

H.A. – Thanks for your efforts, on behalf of all the parents here we really appreciate it!

7:58
Comment From Joeliene

will this live chat remain available for other to read if they could not participate?

7:59
Yes – there is a live transcript available for the chat.
7:59
Please provide additional ideas on www.hackingautism.org – we are still accepting new ideas!
7:59
Comment From Rachael

thank you so much for looking out for new ways to help our kids :)

7:59
That’s all for tonight – thanks everyone!


Hacking Autism – Using Technology to Give People with Autism a Voice

August 9, 2011 2 comments

When touch-enabled computing was introduced to the world, no one could have anticipated that this technology might help open up a new world of communication, learning and social possibilities for autistic children. Yet it has.

Hacking Autism is a story of technology and hope and the difference it’s making in the lives of some people who need it most.

Hacking Autism doesn’t seek to cure autism, but rather it aims to facilitate and accelerate technology-based ideas to help give those with autism a voice.

Share Your Idea

If you could design a touch-enabled software application for the autism community, what would it be? Maybe it’s a game or a learning tool or even something that could assist caregivers. We want your ideas.

Visit our Facebook tab and help us hack autism!

HP has teamed up with Autism Speaks and the Flutie Foundation with its Hacking Autism initiative, and now offers special pricing to the autism community. Sign up here to take advantage of these great deals – and read more to get your special coupon code.

Once you register, you can receive an additional $50 off any pre-built TouchSmart PC by entering DTTM2937 at check out! Click here for terms and conditions.

John Robison Discusses IMFAR Technology Demonstration with Alex Plank at IMFAR

Autism Speaks Science Board member John Elder Robison is the author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventured of a Free-Range Aspergian. You find out more about his IMFAR experience, here, here, and here.

Alex Plank, an autistic adult who founded the online community Wrong Planet. Alex is a graduate of George Mason University. You can see more of Alex on his Wrong Planet YouTube channel.

To find out more about ‘Innovative Technology for Autism’ visit here.

Technology and Autism

March 7, 2011 75 comments

Welcome to this installment of ‘Topic of the Week.’ These topics stem from submissions from our community. If there is anything in particular that you would like to see featured, please contact us!

Have you, or someone you know on the spectrum, used assistive technology to help communicate? Are there any applications you favor? What are some pros and cons of using assistive technology for those on the spectrum?

In this coming week’s ‘Community Connections,’ Family Services will devote a newsletter to technology and autism. Signup and receive here!

Innovative Technologies Help Identify Patterns and Reveal Solutions in Autism

August 30, 2010 3 comments

A recent study reports that a quick brain scan could be used to screen for autism.  The study, from senior author Declan Murphy, Ph.D., of Kings’ College London, has garnered considerable attention from the media for its potential to change the way we identify autism spectrum disorders (ASD).  There is, however, another interesting aspect to this story. The investigators borrowed methods from a field of computer science and engineering called machine learning.  These tools are most effective in finding patterns in sets of data that are large and heterogeneous for use in classification.  Using a set of five measurements that are based on structural features of the human brain, the authors found that different patterns emerged for adults with autism when compared with typically-developing adults and also adults with ADHD.  Importantly, no single brain region or feature alone was able to discriminate between the groups.  When considered together, however, these features were selective approximately 90% of the time.

Machine learning techniques are also being used to classify symptoms in the hope of identifying meaningful subtypes of autism that can lead to tailored effective treatments.  Curtis Jensen, a computer science engineer in San Diego has applied these techniques to the ARI database of symptoms from over 40,000 parent surveys. to identify symptom clusters that suggest possible relationships between symptoms that may be useful for identifying subtypes of autism.  According to Jensen, the clusters “make sense”.  For example, those subjects that score high in the fear or anxiety clusters tend to have lower intellectual disability. Similarly, although challenges with language communication are a defining feature of ASD, the obsessive-compulsive cluster seems to experience the least language difficulty.

Machine learning methods are not alone among the computer science tools used to benefit autism. For many years, the Interactive Technology for Autism (ITA) initiative from Autism Speaks, brought together researchers with expertise in computer science and engineering to seek solutions to problems faced in autism.  Now, through a $10 million initiative from the National Science Foundation, researchers will combine computer vision, speech analysis and wireless physiological measurements to assist with early diagnosis and behavioral shaping.  Collaborators at Georgia Tech, Carnegie Mellon University, University of Illinois at Urbana-Champaign, the University of Southern California and the Massachusetts Institute of Technology (MIT), will be aiming these powerful tools at social engagement and other behaviors.  By analyzing video collected in clinic visits, at schools and also at home, the group hopes to develop tools for screening autism and evaluating the effects of therapy.

Several of the principal investigators involved in the recently awarded NSF grant are long standing members of the ITA steering committee. According to ITA co-chair and Associate Director of the NSF grant, “Organizations like Autism Speaks play a vital role in funding pilot investigations needed to demonstrate scientific feasibility of innovative approaches that lead to larger-scale, federally-sponsored research programs”. Stay tuned as we learn more from the new field of Computational Behavioral Science.

How Technology Can Improve the Future for My Daughter

June 24, 2010 22 comments

This guest post is by Susan Schober. Susan is a 4th year Ph.D. Electrical Engineering-Electrophysics student at the University of Southern California (USC) Viterbi School of Engineering and a mother to a young daughter with autism.

Eva and I

I was searching for answers to my questions.  Will she ever speak?  Will she have a normal life?  What can I do to help?  What caused this thing called autism? What about her future? I read tons of books and searched the internet for some kind of direction. I felt totally lost. Helpless. Confused. Sad. I was even embarrassed to tell people. In fact, only people I absolutely trusted knew my secret: my three-and-a-half-year-old daughter, Eva, was diagnosed with non-verbal autism.

After Eva’s first birthday, which was filled with presents, laughter, and friends, she came down with a fever that lasted for two weeks. Her words and eye contact left at this time, never to return. Her big beautiful brown eyes developed a glassed-over look. Where was the little girl with the rosy cheeks that smiled and giggled constantly? All that remained was an unresponsive child that stared at our ceiling fans or at the leaves blowing in the trees. She acquired weird habits like her love of collecting anything plastic, especially gift and credit cards. More recently, she became obsessed with computers and anything electronic.

Her current fascination is fine with me though, as I myself am a Ph.D. Student in Electrical Engineering (EE) at the University of Southern California (USC). At USC, I am completing my doctorate in Ultra-Low Power Radio Frequency/Analog Integrated Circuit Design.

The Diagnosis

One of the first challenges occurred when Eva was one and a half years old.  She was referred by the Regional Center of Orange County to OCKids for a diagnosis. It was pure luck that Eva was to see Dr. Pauline Filipek, who is a specialist in autism spectrum disorders (ASD). Dr. Filipek’s nurse, Teri Book, who would eventually become a great friend, was in charge of scheduling the barrage of tests – which including blood work, EEGs, EKGs, hearing, vision, ultrasound for gastrointestinal issues, and genetics – that followed to get a more accurate picture of what was going on. The official diagnosis came in a 40-page report a few months later. I read it over and over with tears in my eyes.

Eva’s Early Start program started soon after. Her therapies included physical, speech/language, Occupational Therapy (OT), and Applied Behavioral Analysis (ABA).  My mom would always joke that Eva had a full-time job as her work schedule would last 25-30 hours a week, on average.  It was hard seeing her frustrated, but we stuck with the program.  She slowly learned basic sign language and worked with the PECS (Picture Exchange Communication System) to organize her daily activities.

On one of her follow-up appointments with Dr. Filipek, the doctor tried to get Eva to look in her eyes. This was no easy task. However, Filipek would not give up and finally Eva gave in.  Eva looked in Dr. Filipek’s eyes for a brief second, and cracked a big smile—the first smile in a year. I almost fell out of my chair. Dr. Filipek whipped around and looked me square in the eyes and said, “There IS a little girl in there wanting to get out. It is OUR job to help her.” That was all the fuel I needed to start my quest to find a way to help Eva overcome autism.

The Class

It was by chance that I met Professor Olga Solomon and found that USC had a wide variety of research interests in helping those with ASD. That chance came in September 2009 in the form of an email forwarded to the Electrical Engineering Department at USC’s Viterbi School of Engineering where I study. That email was titled: “SEMINAR: Enhancing and Accelerating the Pace of Autism Research and Treatment: The Promise of Developing Innovative Technology by Matthew Goodwin.” When I received that email, I did a double take. It was addressed to my USC account and it said the word “autism.” I thought by accident I had gotten one of my many autism related newsletters or therapist’s emails in the wrong account for some reason.  But when I read it for the third time, I realized that yes, there was a scientist coming to USC to speak about integrating engineering techniques into research on autism.  I thought it so strange and beautiful. I had to go.

At the end of this eye-opening seminar, Dr. Solomon announced that she would teach a class in the Spring 2010 semester titled “Innovative Technology for Autism Spectrum Disorders” funded by Autism Speaks. The course would unite the fields of engineering, occupational science, neuroscience, psychology, anthropology to give a full view of the technological advances in the world of ASD.  Every week, the students would read articles about ASD science and technology, blog about the readings, and invite the authors to present their research in the class. The course was too good to be true.  I believe I was the first person to sign up.

The students came from a mix of backgrounds, including engineering, computer science, and occupational therapists.  I struggled with being open about the fact that I was a mom of a daughter with autism.  When it was my turn, I blurted it out.  This was the first time I had ever told people I did not know about Eva’s autism and it was therapeutic. This small action opened the door for me to use my engineering background coupled with the knowledge that comes with being a parent of a child with ASD. I was so happy; I was not embarrassed anymore. I was here because of my unique experience and my desire to help and to find answers and solutions.

The first few weeks were dedicated to making sure the students had a strong foothold in what ASD was and what current methods exist to aid those with autism. The first speaker was Portia Iverson and we read about her experiences raising her son with autism through an excerpt from her book “Strange Son.” I was so touched by the passage that I wrote in my blog that I was going to buy the book and finish reading it.. The class day came and I received the most touching gift: Dr. Solomon obtained a copy of the book and had Portia sign it for me personally. I read the book in two days.

Each week following the first, the class had wonderful speakers; these included my favorites: Shri Narayanan – a well known Electrical Engineer who deals with speech and signal processing techniques, Skip Rizzo – a Virtual Reality (VR) guru, and Gillian Hayes, who works in pervasive computing for ASD.  After each talk, I made every effort to speak with the lecturers in order to ask questions and broaden my knowledge. Most importantly, I wanted to say “thank you” and shake their hands. I had such an overwhelming feeling that in order to solve the puzzle of autism, every approach, story, and effort was an important  piece to be considered in the autism equation.

At the end of the semester we worked in teams with mixed backgrounds to develop an innovative idea to apply to the field of autism. My group’s project was to develop an interactive VR and pervasive computing program to help diagnose children with autism living in rural areas where there are not enough resources or doctors on-site to make a diagnosis. We collectively wrote a grant proposal which, if accepted and funded, could be applied to disaster areas like that of Hurricane Katrina or Haiti. Using technology such as video and wireless sensors to gather data (including heart rate, sound, and body movement), the VR system could be set up in a remote area and used by a doctor or trained therapist at another location to make an initial assessment for a child suspected of having autism.  This, in turn, would allow that child to receive an accurate diagnosis, including a recommendation for therapy or medical attention as needed. Not all families are as lucky as I was to live in an area with access to top doctors, therapists, and research facilities dedicated to autism. Hopefully, with a portable system like the one proposed, costs, such as travel expenses and doctor fees, can be greatly reduced and children suspected of having ASD can receive effective treatment quickly.

Looking Forward

Now that the class is over, I can look back and confidently say I am so grateful for the experience and connections I have made though the semester.  The autism technology course has opened a whole new world for me. I signed up for the class because it intrigued me for the obvious reasons.  I wanted to know more about autism and what was out there that could possibly help heal my daughter.  What Dr. Solomon’s course gave me was a basic, yet solid understanding of autism and a way in which I could personally contribute my engineering skills and unique background to forming innovative technologies to improve the lives of individuals with ASD.  Looking forward, I would love to continue to further my research in ASD technologies using both my insight as an engineer and a mom of a child with autism.

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