Mother and author Kristine Barnett, whose teenaged son Jacob was diagnosed with severe autism and now considered one of the world’s most promising physicists, is fighting to change perceptions and misconceptions about children on the autism spectrum. She spoke with Sonia Mendes about her parenting journey and her mission.
Kristine Barnett has lived through every new parent’s nightmare: being told to “adjust her expectations” for her firstborn child.
Jacob, diagnosed with severe autism, was just three years old when a special education teacher visited his home in Indiana and suggested Barnett take away her son’s beloved alphabet cards. Barnett and her husband, Michael, were told Jacob would never read.
The so-called experts were, in fact, dead wrong. Through an unconventional approach to working with Jacob’s autism, Barnett not only “mainstreamed” her son in time for regular kindergarten, she also unearthed a young mind brilliant beyond her wildest dreams.
At nine years old, Jacob started working on an original theory in astrophysics that many believe might someday put him in line for a Nobel Prize. Now 16, Jacob is considered to be one of the world’s most promising physicists, with an IQ higher than Einstein’s.
Since his family relocated to Waterloo, Ont., last year, Jacob completed the PSI Master’s-level program at the Perimeter Institute and is now working on his PhD research.
Barnett – a warm, soft-spoken mother of three – has a crystal-clear mission in life: To fight to change the perceptions that we have of children on the autism spectrum. She recently spoke with Parenting Times about her incredible parenting journey and her best-selling book, The Spark: A Mother’s Story of Nurturing Genius.
Parenting Times: In September, you were a keynote speaker at the Ottawa School Council Training Day – how was that experience?
Kristine Barnett: It was beautiful…we talked about communicating with parents and teachers, and from school board to teachers, and it was great to start some honest conversations about autism.
I want to speak wherever I can because I have this message that is so important – that we have to change the way that we’re looking at these beautiful, autistic children in our communities. When you’re faced with autism, it is so difficult and there is so much stigma and judgement in the way that you approach the world, so for me, I will always fight to change those perceptions and advocate for true acceptance.
PT: Undoubtedly, your book will resonate with any parent of an autistic child who faces never-ending therapy sessions and worries that their child is falling short of developmental milestones. What would be your words of advice to a parent in that situation?
KB: Therapy is important, but give yourself permission to have fun. When I work with new autism families, I’m always struck by how many of them have lost that basic ability to have fun. When a parent is faced with an autism diagnosis, there is an overwhelming sense of urgency – a feeling of being left behind and worry about never catching up.
When you’re so involved with the autism therapy schedule, you’re always thinking of goals. We have to remember the intrinsic value in playing in the sandbox, heading to the beach, playing under the stars or building a fort.
The wonderful thing about the newest research is that it indicates these relaxing activities – the simple, everyday childhood experiences – can boost the progress being made through therapy sessions. As parents, we have to be able to let go of the guilt and just be in the moment with them.
PT: Back in Indiana, you created two grassroots programs – the Little Light program as a mock kindergarten for autistic kids, and later the Youth Sports for Autism group. Both of these programs had a very strong sensory component, to make them attractive to the autistic brain. Tell me more about the importance of engaging the senses of autistic children.
KB: When I started out with Jacob, one of the things I realized is that he might be missing childhood experiences – that was the root of all the programs I did. Most of these experiences – like being up to your knees in sand, feeling the wind, jumping in mud puddles – are things a therapist would call “sensory experiences.”
These things are so important – we recognize the power of nature in healing – and I really feel that the more we’re able to let go, as busy parents and as professionals working with autistic kids, the greater the outcomes. These can be defining moments for our kids…like the times I spent taking Jacob out at night to look up at the stars.
If someone had told me then that Jacob would become a theoretical physicist, I don’t know that I would have believed them. I didn’t understand that when we were looking at the stars, Jacob was doing math and calculating angles and distances; sometimes what children do does not look like a checklist for success.
PT: You have faced more than your fair share of adversity – Jacob’s autism diagnosis, your second son, Wesley, being diagnosed with a neurologic disorder and your own health issues – a stroke at age 30 and a subsequent lupus diagnosis. When reading The Spark, I was struck by your incredible grit and determination – what kept you going during those difficult times?
KB: The truth is, we all have similar stories – we all have struggles, whether they are with an autism diagnosis or dealing with cancer or divorce. What’s important is to realize that you’re never alone – there is always someone in your community who is going through the same thing. Building community is very important to me, and it’s really grounded in my faith and my upbringing in a “modern” Amish family.
After Jacob’s diagnosis, we were able to build this autism community and my faith made me stronger and better able to lead people. When you struggle, you feel things in your heart and your spirit; by going through these challenges we have an opportunity to learn how to reach out and help another person.
PT: Your book has touched many lives and expanded our collective understanding of autism. In the years since Jacob’s diagnosis, has the perception of autistic children changed and where do we go from here?
KB: The idea that there is possibility in a child with autism is relatively new; when I first started talking about skills in children with autism, people thought I was crazy. To start looking for skills and talents is so tremendously powerful – that’s where we need to head in developing programs for children.
Every single one of the children that I’ve worked with – and I’ve worked with thousands – had a skill and an ability that they loved. I also don’t believe that autism is a rigid rainbow of low functioning and high functioning; Jacob was originally diagnosed as being severely autistic and he jumped around on that rainbow. The ability may not be astrophysics – it may look different, but it’s there.
I truly believe that every person on this planet is beautiful and has something to offer.
If you are parenting an autistic child and would like to connect with Kristine Barnett, she welcomes your emails at firstname.lastname@example.org.