Friday, July 8, 2016

Life Animated

Life Animated - a movie about the journey of an Autistic man and his famous family.  
Many of you know that I and my children are dyslexic and that is something that drives my work with the robot teams.  The other side of the spectrum of brain structures is Autism and Aspergers, which is also very frequently seen in the offspring of engineers; affecting about 50% of the families of our college friends and several kids on our team.  It seems for us that families we know fall into one or the other category, having a genetic predisposition and thus dealing with the fall out of not being neuro-typical.  

It is also no secret that my husband and I are now on our second set of careers, I have been using needlework as a way to fund passions and give the flexibility that is needed to be available to deal with the needs of our kids.  He is doing the same too - having built several large companies in the speech recognition area.

When looking for something else to do that was flexible, I encouraged him to do something socially responsible.  Maybe it was penance for inventing the systems that have you "say 1 if you want it in English, 2 if Spanish".  (You can ALL thank me for that backdoor out of the menu - 'operator'.  I insisted during the first company).  But I wanted him to find a way to use his incredible talents for the good of man.  So he is helping several companies who want to use speech recognition to do good things in medicine, education, and other areas.  One such company is about to launch their product and it is luckily timed with a movie that premiered on Friday - and I just have to talk about it after keeping mum for so long.

Ron Suskind - You might have seen him
on TV this week. 
Ron Suskind is a pulitzer prize winning author and reporter who has specialized in the stories behind complex financial and world politics.  He is gifted with words, frequently interviewing our presidents and other power brokers.  So it might come as a surprise that his second son, Owen, is autistic.  You may have read an excerpt or heard an interview with him about his more personal book; Life, Animated, Sidekicks, Heroes, and Autism.  It was about the surreal life he and his family have led for the last 20 years - interviewing the President during the day and returning home at night to live in a make-believe world of Disney movies in order to communicate with their son.   Well, his son's life has been turned into a documentary which won awards at Sundance and is getting rave reviews at every film festival from Cannes to Tribeca.   They were on Nightline together last night. (Ron is a frequent talking head - he popped up in the American Experience documentary on Walt Disney! I had to laugh a lot when I saw him as a Disney expert in that movie recently).

It was very exciting to have the opportunity to view the film several weeks ago in a private showing for a small group of us in Cambridge before the USA premiere in NYC on Friday.  Even more fantastic to have Owen join his parents on stage and take our questions.  I had seen Owen on The Daily Show last year and knowing his history - it just makes you choke up and cry.  I encourage you to watch the trailer and if the film is showing anywhere close to you in the next few weeks, go see it.  You don't need to know a child who is autistic to have the film resonate.  As Roger Ebert said:
An animation in the film capturing the moment when Ron
used a favorite puppet of Owen's (side kick of Jaffar in Aladdin)
to talk to Owen and get a response for the first time.

It’s impossible to completely divorce my reaction to Roger Ross Williams’ remarkable “Life, Animated” from two of the most definitive roles in my life: father and film critic. For the former, the film emotionally forced me to consider my relationship to my sons as it captures a father whose life forever changes when his son’s autism puts up a wall between the two of them.   - Roger Ebert, January 23, 2016
The film is strikingly honest in the feelings of the family, both in the tragicness of autism and the hopes that their long (very long) road to reaching Owen took.  But it doesn't gloss over the harsh realities of the future and the limitation that Owen faces in a world more suited to 'normal'.  But one line sticks with me over and over from the movie - one that Ron has said to me in relation to our dyslexia as well.  "Who defines what a meaningful life is?!"  It is something that my neighbor, a robot parent and world famous psychologist, has said as well regarding their oldest child who is developmentally delayed due to epilepsy and is currently going through the same types of trials and tribulations of becoming semi-independent as a young adult in this world, just as Owen is filmed doing during the movie.  She is the most lovely and loving girl!  Her mother and I have spent many a night brainstorming job prospects with her on the porch and ways she can have a meaningful path forward that makes her happy to contribute to this world.

Who defines what a meaningful life is?  That is so true and understandable by myself and the parents of any non-neurotypical child, whether they be affected by Downs Syndrome or Autism or Dyslexia.  The film is full of powerful thoughts and surprisingly much laughter (The discussion between Owen's older brother and him about having a girlfriend is just priceless!).

Ron has been a fun person for my husband to work with.  His stories of behind the scenes with powerful people are always interesting and hilarious.  It is quite funny to hear on a Monday who called over the weekend to ask for advice - often I see news clips on CNN related to these 'guess who called' quips.  He contacted my husband when he wanted to turn his method of reaching his son, called in the field 'affinity therapy', into a tool.  Being one of a handful of best known experts in speech recognition, he quickly helped Ron put together a demonstration of the idea and they have been off to the races ever since.

Sidekicks application to help a parent or therapist communicate
with an autistic child using their affinities 
Sidekicks is a speech to text and text to speech application for smart phones that helps Autistic people communicate with others and navigate the complex world we live in.  It leverages the affinities that autistic people have and breaks down the anxiety barriers to communication using the device as the conduit.  The stories of the pilot users that my husband has brought home has brought tears to our eyes for months.  Parents turning to the test runners with tears in their eyes after their child told the  device what their favorite food is - they never knew as the child almost doesn't speak to them at all.  It isn't magic, but something that a therapist or committed parent can use to reach another level of communication depth with the autistic person.  As my husband recently pointed out, its just like the games I developed for my son when he was 6 to make memorizing the flash cards of the most common words (I, them, the, or, at) more engaging.  They didn't get used by themselves - it took me using them with him for over an hour a day for an entire summer to make progress (yes, that is how dyslexic my world-class robot guy is - couldn't distinguish those words without constant practice every day for months!).  But as every parent who only has 18 years to arm a child who isn't neuro-typical for the world - or a world without them someday - any tool that makes that time more effective is a life changer.

So that is my 2 cents - go see the movie if you can.  It is uplifting without having sugar and false hopes spread all over it.  Having met Owen and knowing his parents, its true.  Many, many years of hard fought work to reach him using the means that resonated with Owen.  I have another friend from MIT whose autistic son will be entering college this year - having known him all his life and how much early intervention there was and the very hard work of both of his parents, a more engaged life can be achieved by many autistic people.  It takes time, parents who will do anything that works, the gang of committed therapists (Cornelia Suskind is quick to point this out when you meet her), and tools that help them work with the child.



  1. tricia,
    you probably have this memorized, but it is so true to you life

    You are the bows from which your children
    as living arrows are sent forth.
    The archer sees the mark upon the path of the infinite,
    and He bends you with His might
    that His arrows may go swift and far.
    Let your bending in the archer's hand be for gladness;
    For even as He loves the arrow that flies,
    so He loves also the bow that is stable.
    kahil gibran

  2. What a profound story. Thank you so much for sharing it and spreading the news. Blessings!