HOW GOOGLE IS SHAPING THE FUTURE OF AUTISM
The transition into adulthood is challenging for everyone — even more so for someone severely autistic like our 14-year-old grandson, Christian. Our best hope is that he is able to eventually achieve some level of self-sufficiency and self-esteem. But well-matched places where severely autistic persons can learn to live on their own are as difficult to come by as a loving and exhausted parent’s willingness to let go.
If we only knew more about Christian’s specific autism we might be able to design a passage to maturity and even helpful treatments and therapies not obvious to us today. What a gift that would be.
In fact, we are closer than ever to this possibility because of a collaboration I initiated several years ago with unlikely partners: Google, Autism Speaks and Toronto’s Hospital for Sick Children. Our project, called MSSNG, ultimately aims for a deep dive into the whole genomes of autistic children and their families. Isolating and better understanding specific kinds of autism would reveal more about particular causes, treatments and even cures.
This sequencing of whole genomes generates billions of data points that must be managed, analyzed and shared to be meaningful to scientists, researchers and others who can help crack the code to autism and other deadly conditions. So Google brings its data-taming skill to the autistic gene study expertise of Dr. Stephen Scherer at the Hospital for Sick Children.
I am sure the findings they unlock sequencing 10,000 autistic genomes by year’s end will make a difference to Christian and so many others with Autism Spectrum Disorder (ASD) — but how soon, no one can be sure. And so for now our family, like so many others, struggles to fill the gaps as Christian moves through his teen years.
The truth is that we’re making this up as we go — the families, the educators and the medical professionals who tend to Christian’s care.
What we need, now, is the same level of commitment and collaboration among qualified researchers who can mine and leverage the data trove that Google is storing on an open Cloud platform. It represents a new level of open science that scientists and academicians preferring to work on their own seldom engage in. But technology’s bounding advancement, pressing urgency (with the incidence of autism 1 in 68 children worldwide), and Christian’s suspended adolescence demand nothing less.
