Ron Suskind is a Pulitzer Prize-winning journalist and the best-selling author of several books, including Life, Animated: A Story of Sidekicks, Heroes, and Autism (2014); Confidence Men: Wall Street, Washington and the Education of a President (2011); The Way of the World: A Story of Truth and Hope in an Age of Extremism (2008); and A Hope in the Unseen (1998). Through his books and articles he has tracked the achievements and disappointments of presidents, Wall Street’s impact on policy, and terrorism.
In addition to being an author, Ron was senior national affairs reporter at the Wall Street Journal. He has been a contributor to numerous television news programs, a writer-in-residence at the Harvard Kennedy School of Government, and he presently lectures at Harvard Law School. Ron also is the founder of Sidekicks, a company building technology for individuals with autism to navigate and connect with the world in new and enhanced ways.
Despite his extraordinary career, nothing can match the journey, passion, and accomplishment reflected in Life, Animated, both the book and movie. Ron and his wife Cornelia, a former journalist, were blessed with two sons, Walt and Owen. One day, Owen “disappeared.” In Ron’s own words, “an engaged, chatty child, full of typical speech… fell silent. He cried inconsolably…Wouldn’t make eye contact.”
Thus began Ron, Cornelia, and Walt’s journey to find Owen. Leo Sarkissian talked with Ron about the journey.
Leo: You and Cornelia did not allow the shock of Owen’s extreme behavioral change as a toddler to paralyze you. What spurred both of you beyond your natural resiliency?
Ron: We kind of were paralyzed at the start. We were stunned; it didn’t make any sense. I said to Cornelia, “a kid doesn’t grow backwards, how does this occur?”
Once we heard “autism,” that started to change things. We didn’t know what it meant, though we knew “Rain Man.” Doctors began to explain it to us. This was the time, around 1994-95, that definitions about the spectrum were coming to shape.
As journalists, we investigated it ourselves and we found more confusion about the underpinnings about autism than clear understanding of the etiology.
We kept busy, always trying things. This kept us from becoming paralyzed, or accepting a status quo. We weren’t too quick to judge what would be of value or not; we knew we would not be able to measure that at first.
It also probably helped that both of us had spent a lot of time questioning authority already as journalists. We were very comfortable probing with doctors asking them how they knew what they thought they knew.
Leo: During a very tough period in Owen’s life, when he was bullied and not making progress, you both questioned the professionals’ advice and renewed the animation journey. Given that experience, what would you want professionals to know?
Ron: What I want professionals to know is that in many ways, you as a professional need to authorize the parents to question you, because they won’t otherwise. I say this as an investigative reporter who is attentive to the way people tell you things.
If you are a person who is seen in authority or mastery, you have to authorize the others to be your companion to be in the search for answers as a professional. You won’t hear insights from them unless you do, and you won’t hear the new set of questions that you can answer as a professional.
Parents are the key actors in the effort to find a path to engagement and are more connected to the life of the child. Sometimes professionals are not thinking enough about what it feels like from the parents’ shoes.
The parents, even when they are capable, aren’t acting in a way that lets the doctor know things that the doctor isn’t expecting.
Professionals have to draw the parents out, almost as investigators. You have a child who can’t describe his status or how he feels so you have to rely on what the parents see. They offer the most valuable and accurate vantage point. Ask questions to burn off the illusions or assumptions that cloud what they are seeing.
Leo: What do you think you (and Cornelia) learned about yourselves in this journey?
Ron: Cornelia would say what we learned is that you have to trust what you can touch, what you know from the most direct experience. You are not going to rely on what other people say or see as the last word. We learned to trust ourselves to be able to know what is in front of us.
Cornelia has a great line: “remember to find the joy in your child.” The desire to fix them all the time for their own good – to be more successful in the wide world – is a constant urge for a parent who cares. But spending every minute of every day trying to fix somebody can’t be the foundation of the parent-child relationship. It’s got to be about finding love and joy.
We realized we could find him by living inside of his passion. That insight freed us from having to feel all the time that we needed to fix him. We found out in so many ways he wasn’t broken – different, but not diminished and not less.
Leo: Can you speak to the similarity between Cedric Jennings, the subject of your Pulitzer Prize winning work and Owen? (Cedric was ridiculed for his dream to enter an Ivy League school in his economically deprived, inner-city high school.)
Ron: Right after Owen’s diagnosis, I begin a journey, which results two years later in the Pulitzer Prize and then in 1998, the publication of A Hope in the Unseen. Life, Animated is about how Owen changed, but also it’s about how we all changed: Cornelia, me, and Walter. After Owen’s setback, I started to search for “left behind” people: in inner city America, in Afghanistan, in Pakistan, and in the hollows of Tennessee – people who had been discarded by society.
At the time, I didn’t realize that one of those people was living in one of our bedrooms. We unconsciously devalue other people based on things we don’t recognize: society’s judgments, cultural norms, and definitions of what success is and is not. We devalue certain people who are just different from us, with whom we don’t have an easy rapport about shared values or kinship.
So that is what is happening when I go to an inner-city, forgotten high school a few months after Owen is diagnosed. Cedric Jennings is separated by the bad luck of birth, race, poverty, bigotry and ignorance. Owen is separated from a life of opportunity and possibility by a neurological hand he is dealt.
More and more I began to see these things as not all that different. Cedric and Owen are people who did not fit, who mostly don’t fit in “one size fits all” models as things are constructed in this country and most countries. Cedric, having been in a high school that was mostly crowd control, was also decontextualized when he entered “our world.” He didn’t know the “supposed to’s” or how to get from Point A to Point B. Owen doesn’t know either – they both have interesting gifts and defaults; they both rely on their passions more than other people do.
Cedric was at risk of failing at Brown University and was returning home, because every time he tries to write a paper on educational theory and this junior high school he is observing, he can’t do it. It is so much like his experience that he gets angry as he writes it. So the night before his paper is due, he writes a 68-line epic poem on an educational theory; he handles all parts of this complex theory in rhyme. His passion is music, rap, and gospel so he turns the paper into a song! He passes the class.
What does Owen do? He finds his passion, memorizing 50 Disney movies, and invents his own language using his passion – so you can consider it a gift.
Freeing up the compensatory gifts through neuroplasticity can be a challenge, but the brain finds a way. For every area of deficit, the brain creates an equal compensatory strength. It often becomes the thing you are known for and carries your life forward.
Leo: You have a passion for helping others. Ron, can you share Sidekicks with our readers?
Ron: After the book came out, parents from all over the world were calling us. Now I see my child for who he is, but I work out of the home or I’m strapped for cash. What can we do as a family?
Cornelia and I got together with psychologists, technology professionals and others to develop a platform so that individuals could use their affinity – their passion – as a pathway for communication with their family or with anyone else.
Individuals with autism use their deep interests in ways that are more fundamental than the rest of us – as “code breakers” to understand their emotions and their place in the world. They can turn their affinity for dinosaurs, Disney, or anything else into a model for self-awareness or an emotional language that can connect them to their own sense of identify so they can share their deepest feelings. It’s something our kids can do that they don’t get credit for.
We use the latest technology to get them what they need to support their affinity through video clips. We’ve built Sidekicks as a window that helps parents to reach their children. They are having Iago moments just as I had – connections that take the parent inside an often-inaccessible place where the child is living. (Note: Iago, the parrot from Aladdin was the puppet Ron used when Owen verbally communicated with him for the first time after age three).
Once they visit that place, both parent and child can emerge together into the sunlight. That’s what we‘re doing. On the movie screen 40 feet tall, Owen sometimes seems one in a million; in fact what we’ll find a few years from now is that he’s one of a million. There are folks with ASD, with many capacities, that will startle us with their power.
The key is not to get too caught up in using the usual yardsticks in measuring value. There are many kinds of intelligence, but we tend to measure a very narrow band. Many folks who are neurodiverse are rich in various types of intelligence that are not measured and validated. We need to be able to measure those non-validated capacities so our kids can get credit for what they can do as opposed to simply dismissed for the things they cannot. Value them for the things they can do!
What we find through Sidekicks is that once you turn the passion into a pathway it becomes a telescope for what is visible when you tap intrinsic motivation.