Home > Science > How Technology Can Improve the Future for My Daughter

How Technology Can Improve the Future for My Daughter

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.

  1. Tasha
    June 24, 2010 at 4:40 pm

    Susie and Eva are awesome! Best of luck as you continue to figure out this difficult disorder.

  2. Julie
    June 24, 2010 at 8:05 pm

    We just stared our three year old with neuro biofeedback and wow progress central! I am interested in learning more about Eva that is so wonderful! Oh we live in Florida and Sophia our daughter does the feedback at CNS Wellness in Tampa.

  3. richard fauth
    June 24, 2010 at 8:43 pm

    Susan- I am the father of an autistic child and a mechanical engineer. I know there are many children with autism who have parents with technical abilities and have wondered why some type of organization could not be founded in which we could use our abilities to try and invent better technologies for use by our kids. as an example, Zac browser is an attempt by the grandfather of a child with autism to help children with autsm surf the net- and there are many more folks out there like you and me who would likely donate our skills if sources of funding research were available- anybody else have an idea how e could pull that off?

    • Susan Schober
      June 25, 2010 at 4:45 pm

      Hi Richard! Thank you for the nice comments. I actually had the same thought, as there are many parents who are engineers, scientist, mathematicians, and/or musicians that have a child (or children) who are on the autism spectrum. One of the great books my father (who is also Electrical Engineer) showed me was: “The Einstein Syndrome” which came out of Stanford. Here is a link to the book:

      http://books.google.com/books?id=680LYsUXPZAC&lpg=PP1&dq=Einstein%20syndrome&pg=PP1#v=onepage&q=feynman&f=false

      There are some great facts in there including that Einstein and and the awesome physicist, Feynman, did not talk till after the age of 4. In my class there is another child who’s father is an engineer, and every time we see each other at parent-teacher meetings, him, my dad, and I have lively discussions about this. If you have any ideas or know an organization (hey I’m totally in if you want to a co-founder of one with me!) dedicated to people like us who have an autistic child, let me know!

      • September 7, 2011 at 12:11 pm

        We at Foothill Autism Alliance http://www.foothillautism.org are trying to put together a panel of speakers for our November meeting centered on the issue of new technologies esp the iphone and ASD. We would love to have you and your team speak to us. Ours is a group of volunteer parents who arrange educational talks and social events for our community, and as such, I have an 11 yo moderately functioning son. Many thanks for all you do.

  4. Christina Baker
    June 25, 2010 at 1:56 am

    Thank you for sharing your heart and thoughts with us. Susie and Eva will make a positive impact in so many people’s lives. I say this not because I know them personally, but because of the characters these ladies are.

  5. Sarah
    June 25, 2010 at 8:40 am

    Portia Iversen’s book, “Strange Son” is singularly my favourite book over our family’s journey these past 6+ years.

    Odd that this book taught me more about my son than any other at first glance, as I have a very “high functioning” son – but not odd when you finally understand that I do not have a visual processor. Our VB therapists, me, etc. where frustrated with his difficulties completing puzzles, etc. (which made no sense when everything you read tells you your child is supposed to be visual).

    Reading her book was like peeling a fascinating onion (I like onions :) ). I credit her with helping me to comletely understand my son, to close the loops of understanding.

    But her book wasn’t only fascinating re: visual/verbal. What really floored me (as if that wasn’t enough)… was the politics of science (and has allowed me to understand the bias from one university to the next – forget DAN!s, etc. – I find the politics/divisions between different university camps to be truly fascinating).

    I too have become a science junkie. Largely, due to the fact I am married to a university research scientist/prof – in a totally unrelated field – who has challenged me – and my decisions every step of the way – “prove it.” So, I’ve been reading, reading, reading every day – and still do.

    But Portia Iversen, has taken this academic interest to a whole other level (besides of course, the organization and drive to start CAN with her husband). Her knowledge and understanding is staggering. Portia Iversen is MY HERO. And she always has been since the day I read her book (I have you beat, I remember reading through the night and finished around 4:00 am).

    And to you, Susan… thank you. You will make a wonderful contribution to our community. Thank you.

  6. Bonnie Yamane
    June 25, 2010 at 4:33 pm

    We began using SMARTBOARDS in our special day class pre-K-1st(primarily ASD students) two years ago with some very good results. Has anyone else been doing so and would like to share strategies or results?

  7. June 25, 2010 at 5:22 pm

    I wish this course could be made available to all parents and teachers.

  8. Pauline
    June 25, 2010 at 9:47 pm

    You have a beautiful daughter! I’m so sad as in January, we had to admit our son to both a crisis center and now a care home as we could not keep him at the home. He not only has “No Fear of anything”, but he has no sense of Danger. He can hop a 6′ fence like you or I could step over a brick. I love him, I miss my baby (even though he’s 12) and even though he’s considered one of the top 2 most difficult cases of Autism at our Northern California branch of Kaisers, if there’s anything, just anything we can participate in to help him, may I (we) please? Thank you Ms. Susan and thank you all for any research what-so-ever.

    Love from I don’t know how to fix my broken heart,
    – Pauline

    • Susan Schober
      June 26, 2010 at 7:59 pm

      Hi Pauline,

      I am so sorry for all your hardships. Autism is sometimes really difficult. I can understand as Eva is super independent and has to be watched every minute. Just stay positive. I wish you the best.

      Susan

  9. Sandra Hauge
    June 26, 2010 at 12:25 pm

    Bonnie:We started using visual schedules and social stories with my son who has ASD. But I recently came across a program for the iphone, ipod touch, or ipad, called iprompts. It is an app that you can do visual schedules, or choices, and set timers. And you have access to millions of pics and can add your own from a computer. I don’t have an iphone, or the others, but am going to get 2 ipod touches for both of my ASD high functioning children, ages 5 and 11. They are currently testing an autism specific app that looks great too. Look up ipromts on YouTube and there is a video about how the app has worked well not just for ASD kids, but other special needs kids as well.
    Susan: Thank you for all the valuable information, and books that I can check out. I have a son, age 5 and a daughter, age 11 on the spectrum. Both are high functioning, and my daughter wasn’t tested until age 10, after my son was diagnosed at age 3. (my husband had recognized that he had autustic characteristics by 6 months, so we had done some early intervention on our own very early, which helped him very much.) I had never heard of autism before, and sure wish I had recognized earlier my daughter exhibited autistic characteristics. Because she is very smart she learned to adapt over time, which left her just short of an official diagnosis, and I was told yes she is ASD, but had adapted well enough we can’t give an actual diagnosis, but she needs some help. Without an actual diagnosis it is hard to find help. Any ideas on how to help an 11 yr old with autistic type issues who is brilliant intellectually, yet delayed socially in many ways? I have all kinds of knowledge about early intervention, and such because of my son, but the help I get for him, would be difficult to apply to her.
    Also, with my son, we used a variety of things to help him. As you know you will try about anything to help your child out of the “fog” of autism. We use ABA, picture schedules, and social stories. We make games out of learning information. We have used Teach 2 Talk and Teach 2 Play videos and Chipper Chat. We also took him off of milk, and switched to soy milk, which suddenly I had a child with an imagination and that talked much more. We were about to implement the “autism diet,” and make huge changes in what our family ate in order to possibly help our son more, when a friend of ours who didn’t know our son was ASD, called my husband. They were talking about life, and turns out we both had ASD kids. His child was non verbal, while ours was verbal. He told us about a nutritional product they tried that worked really well for their son. After a month of use they started noticing positive changes in behavior, and after 4 he said, help mom. We agreed to check it out, and ended up trying it. After about a month we saw significant behavior changes as well. After another month, his ability to say sentences without getting stuck and repeating himself over and over almost disappeared. He has been on it for almost a year and now is flying through ABA programs, has no gut issues anymore, and is more and more a typical child. He still has a few “quirks” but is amazingly better. And the best part was we didn’t have to take away most of the foods he would eat, to help him, as he would only certain foods. It is called Reliv. Two “shakes” a day, and we use The Classic, Innergize, Fiberstore, Arthaffect, and ReversAge. We make the shakes with all different juices, and soy milk, with whatever flavor of sugar free syrup he wants. Its just total nutrition, good for you even if you don’t have health issues. It isn’t a cure, but combined with early intervention, ABA, PT, ST, OT and structured lifestyle with consistant parenting, we have come a long way from the kid who wouldn’t talk more than a word here and there, and wouldn’t let anyone touch him, and showed no affection toward anyone. It has been hard work, but worth every bit, when my son comes up to me and wants a hug and kiss and says I love you mom. If you want to check out Reliv, they have a website: http://www.reliv.com. Explains the science behind the products and who the scientists are. One is the man who was involved with developing Enfamil formula.
    I really enjoyed your story of you and your daughter, and have some new avenues to check out. Thanks for all you do to help other families with ASD kids.

    • Susan Schober
      June 26, 2010 at 7:51 pm

      Hi Sandra,

      Since Eva is so young, I am still gaining a lot of experience raising her. To possibly help you understand your children better since they are on the high functioning side, I would highly recommend Temple Grandin’s book (which we read from in the class I mentioned in my blog above):

      http://books.google.com/books?id=hZ59QgAACAAJ&dq=temple+grandin&hl=en&ei=3I4mTK23BsXhnAfEypG9Bg&sa=X&oi=book_result&ct=result&resnum=1&ved=0CCgQ6AEwAA

      I learned some great things from this book, for instance in the class, we read an excerpt then did a comparison with all the students to see how they really thought: in words or in pictures (as a majority of ASD individuals do). Weirdly enough out of everyone in the class, I was the only one that thought in pictures. I actually remember perfect pictures of things when I bring them up in my head (this probably helped a lot in circuit and my Organic Chemistry course). Here is an example of an Autistic individual, Stephen Wiltshire, who did not talk till he was 5 (an amazing story):

      It is unfortunate that she cannot get the official diagnosis she needs and I recommend getting a second opinion if at all possible so you can know better how to proceed.

      One more recommendation could be music therapy. This could probably help your children greatly.

      I wish you luck!

  10. June 26, 2010 at 2:15 pm

    Susan,
    I wish you all the best with the important work that you have decided to take on here in applying communications and VR technology toward people with autism. You have a beautiful daughter, and she is blessed to have such a caring and resourceful mom.

    Three Cheers!
    audiobrian

    • Susan Schober
      June 26, 2010 at 7:57 pm

      Thank You! :)

  11. June 27, 2010 at 12:05 am

    Can’t wait to see what comes of your work, especially with regards to reaching out to more isolated autism families – whether rural/remote or expatriate.

    My son has had lovely success with his iPad, with general ed/play apps for kids as well as those for kids with autism. We’ve been thrilled.

    I really like iCommunicate for icon-based retrieval of social phrases he’s working on, Stories2Learn for making social stories (there’s a video of one of his stories in the link below), and First-Then Visual Schedule for, well, you know.

    http://www.blogher.com/ipad-nearmiracle-my-son-autism

    Always a fan of technology, and looking forward and outward,

    -Shan

  12. Gale
    June 27, 2010 at 12:59 pm

    Susan,

    Really glad to hear about this project for you and other students at USC. I can’t imagine a program such as that without the input of a true parent of a child with autism. They were so lucky to have you and your family experience coupled with your professional expertie. Parental input and family experience are perhaps the most important aspects of any technology solutions venture for ASD. Is there a place where one might find references for the foundational research behind this project?

    I am happy to hear that technology solutions are continuing to be researched and created for ASD. There has been are a real evolution in ASD-specific software programs and virtual reality approaches. What is great is that they use what appears to be the research-based and identified preferences of people with autism for electronic media that touches the heart of both their over-selective quality of thinking that brings them such joy and focus to become experts on topics from the minutiae to the grand. Also, these technologies incorporate the visual aspects of learning as you mentioned above.

    Did your group use any video-modeling concepts in the development of the projects? Also there are some software programs, a few developed by programmer/developer/parents of children with autism, which might good for future projects to take a look at and as a source for more ideas.

    What a wonderful experience! Congratulations.

  13. Pauline
    June 27, 2010 at 2:21 pm

    I owe everyone an apology. Thank you for your recognition Susan and I apologize to all other parents with our beautiful children for being such a downer. I gave my son 12 years of pecs, sign-language,(direct hit via communication), structure, etc. I’m thrilled to see other people find “Happy/Educational” tools for their sweeties. I’m thrilled to see other children prosper. I’ve always told my husband “It’s so nice to hear happy”. Hearing people/general public laugh during these tough economical times. In this case? It’s nice to “Read” happy. God bless you all. With my utmost respect, – Pauline

  14. Susan (Schober) Bernhardt
    January 17, 2011 at 5:41 pm

    Susan, I was just browsing my maiden name, and I was thrilled to find your article on autism. I have a 14 year old autistic grandson. Most of the time my son and I are the only ones who are able to interact with him. I met Zach when my son started dating his mom, and Zach was five years old. He could not talk. Zach and I spent hours talking into mirrors and fans. He can now talk but our conversations are somewhat limited by his interests and mental ability. A swimming pool allowed him to work on language and physical problems. Zach is loving and has a sense of humor and pride. My (his) problem is that he sometimes gets frustrated, violent, oppositional, and very upset. Sometimes I know what triggers these spells. Sometimes they just start at random moments. I wish I could stop this behavior. Any hints?

    • Susan Schober
      March 31, 2011 at 11:35 pm

      Hi Susan! I just saw your post and think you are so awesome for being such a great mom. Professor Solomon who taught the class I mentioned has been involved with using dog therapy with autistic children. Maybe it would be possible to try this out with your son? She highly recommended to me North Star (http://www.northstardogs.com/autism.shtml) dogs for my daughter in the next few years. We had a speaker come in and describe the amazing work they have been doing with trained dogs to help autistic children who display behavior disorders. I wish you lots of luck! Stay Strong!

      Susan

  15. January 18, 2011 at 1:35 pm

    Research into educational uses of technology as well as electronic media preferences of those autism, has revealed that many folks with autism learn better (evenly, functionally and with generalization of knowledge) and more quickly when they watch video examples of play routines, skill steps, and even social exchanges as opposed to strictly natural environment teaching (people showing, doing, telling, repeating, etc.) It may be that with video examples, one can be engaged in a preferred format and selectively attend to it and learn without distracting sensory input. There are many software programs available that might help though they may not be individualized enough for your young man. See Carol Gray of Social Story fame with Mark Shelley, father and computer software developer, teaming on the DVDs called StoryMovies which are video social stories. If you go to http://www.dttrainer.com/files/storymovies-handout.pdf, you will be viewing a description of them at the DTTrainer website of Karl Smith also a software engineer and father of a child with autism. He produces software that offers a supplemental and alternative discrete trial learning platform with rewards, data collection and customizing capabilities as well as “video-modeling.” I believe he has created or is working on social examples for video-modeling. Of course, Michelle Garcia Winner has developed the most recent stateoftheart in understanding social thinking for more higher functioning ASD or Asperger syndrome. However, her principles and approaches are quite fundamental to thinking social on many levels. There are DVDs available to learn more at her website: www. socialthinking.com Yyou might also want to see the Teach2Talk DVD series using videomodeling http://www.teach2talk.com/teach2talk-social-skills-series.html. hope these resources are helpful. This blog and the links offered have been very helpful to me. :)

  16. July 18, 2011 at 6:00 pm

    Learn more about technology & autism at KiDA’s 3rd annual Summit on Autism at UCI’s Bren Events Center on September 17, 2011. Experts from MIT (Matthew Goodwin) and Harvard (Howard Shane) will share about using technology to advance communication, connection, and development in kids with autism. More info at http://www.kida.com/summit

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