Sunday, April 7, 2013

New book tells inspiring story of Jake Barnett, autistic boy genius

The Spark (cover image)
As I have written before on this blog, I am an adult on the autism spectrum (Asperger's).  Last year, in a previous article, I looked at some of the social pressures we autistic people face, and suggested that parents, therapists, and employers should focus on what we can do, not what we can't.

A case in point is the true story of Jake Barnett in a new book out this month entitled The Spark: A Mother's Story of Nurturing Genius by Kristine Barnett.   Not only is this an inspiring story of a mother's struggle with "experts" on behalf of her gifted autistic son, it is also a general formula for success.  Instead of struggling to get autistic children to give eye contact or play patty-cake, Barnett focuses on what they like to do and builds from that.

Jake Barnett is a genius, but if his mother had accepted the advice of the special ed people, his brilliant mind would have been lost to the world.  At age 2, she was told he would never learn to read or even tie his shoes -- in spite of his obsession with alphabet cards.  All the tests focused on things he was either unable to do or -- and this later proved to be the case -- too bored to do.  While his mind was studying light and shapes and geometric patterns -- things the teachers saw as mere useless distractions -- he had no interest in sitting in a circle with other children or playing with puppets, the usual kinds of expectations for toddlers.  And so he was mislabeled as hopeless.

Kristine Barnett refused to accept a "ceiling" for her son and decided to give him all the alphabet cards he wanted, as well as whatever other activities he found interesting, and work with him from there.  This was completely against all the professional advice -- even her husband Michael was skeptical at first -- but eventually it worked.  As long as Jake could focus on the things he loved -- astronomy, math, history, physics -- he was willing to work on the more mundane socialization skills. As he grew older, he did begin to communicate and socialize with other kids, but he was so far ahead of his age group in academics that by third grade he was dying of boredom and starting to regress back into his own world again.

The solution?  Get him into a special college program, and eventually into college itself.  At age 12, he became a paid researcher in quantum physics -- and solved an open ended problem nobody else had ever solved before.  In 2012 he was featured on 60 Minutes.

Now granted, not every autistic child is a genius.  My own IQ, as high as it is, pales in comparison to Jake Barnett.  But, as I read this story, I could not help comparing it with my own life. I saw some striking parallels, as well as many (sometimes sad) differences.  For one thing, I am 65 years old.  Back in the 1950s when I was in grade school, autism was not so well understood, and Asperger's wasn't even on the charts.  Because I had speech (I was talking at 9 months and could read a newspaper before I got to kindergarten), I was seen as just a bright problem kid who "does not work and play well with others."  But the signs were all there.

Like Jake and several other children in the book, I also retreated into myself between age two and three -- so much so, that I do not remember the names of any of my classmates, and only one teacher -- the one who locked me out in the hall when I had a meltdown.  By high school I was so bored (and so badly bullied) that I almost flunked out.  And I can remember none of my high school teachers or classmates either, nor did I bother to go to my graduation ceremony.  The only reason I got into college was because of my very high SAT scores.  Not until college did I begin to come out of my shell.

I also did not have such a kind, understanding mother as Jake does, either.  When Kristine Barnett talks about mothers of autistic children who "no longer even look at their child," she is describing my mother, may she rest in peace.  My mother had definite ideas of what she wanted her children to be, and I wasn't it.  My early obsession was with insects, which my mother found disgusting and tried to discourage.  Nice Jewish boys don't run around with butterfly nets.  By the time my sister was born, my mother had already given up on me.  She abandoned me emotionally and focused on her "normal" child instead.  An all-too-common story.  Today I wonder if we ever bonded at all.  My father used to call me "oblivious," and accused me of "not caring about anybody but myself."

So I ended up fumbling my way through life.  I sometimes wonder what I might have achieved if my family had nurtured my genius more, instead of lamenting that I never went to parties or the prom. (I did eventually find love and marry at age 33.  My wife and I are still together.)

I share my story, not to complain or badmouth my family, but to reinforce what Kristine Barnett wrote in her book: "...I believe that autistic kids hear their parents talking about patty-cake or asking for a hug, but they're just not interested in those things.  Have you ever been trapped at a party with someone talking about something you don't particularly care about -- sports maybe, or politics or classic cars?  Certainly people with autism are in our world.  They're just not thinking about the things we want them to think about."

I can relate to that.  Sports are so boring to me, I never bothered to learn the rules.  And fighting over a ball seems so utterly pointless.  I never have understood what all the excitement was about.  But show me a bug, and I can tell you all you ever wanted to know about it -- and then some.  The same is true of Jake's mathematics, which for him are not work, but a form of genuine fun.  (How many times have people told me that I "need to learn how to play"?  But I am playing, I just don't do it with balls and bats.  Academics are FUN to me!)

Jake long ago surpassed his mother's ability to understand his equations but, unlike my mother, she nurtured his genius and, at the same time, continued to be mom and surround him with love. She has what my mother did not: a philosophy that says every child is a unique gift of God and should not be crammed into a prefab mold.

Barnett's tells a wonderful story about a girl named Katy (p.148), who is severely autistic and does not speak, but loves to bake and decorate cakes.  Under Barnett's guidance, she got so good at it that she eventually found a job as a cake decorator.  A job that does not required much social interaction, where she can work alone in the back room to create her masterpieces.  Is this not better than wasting time trying to get her to give good eye contact and chat around the water cooler?

So I do hope that a lot of people read Jake's story and take it to heart.  This is not to say that we should never seek professional help.  But those professionals are not gods, they don't know everything, they make mistakes.  And maybe it is time for them to reevaluate their testing methods before we lose any more fine minds that are not willing to respond to patty-cake but who, like Jake, might be working on some revolutionary new idea.  After all, if (autistic) Bill Gates had not come up with the idea of a pre-recorded, loadable operating system (instead of programming each computer separately), you might not be reading this review online.  Think about that as we head, once again, into Autism Awareness Month.
See a slide show of Jake and read an interview with his mother

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UPDATE:  People keep asking me if Jake Barnett is Jewish, and that keeps showing up in the searches that got people to my blog.  He is not Jewish.  According to the book, his family are from a liberal branch of Mennonites.  His story is not here because I am Jewish.  It is here because I am autistic.


Richard Schwartz said...

Kol hakavod, Rabbi Gershom, for this very thoughtful, sensitive analysis. I hope that it leads to far greater understanding of the great potential that autistic children and adults have.

Yonassan Gershom said...

Thank you, Richard -- that's one of the reasons I write about it. So much has changed since I was a kid. Back then, they blamed autism on "refrigerator moms" who supposedly were not affectionate and didn't bond with their babies -- NOT TRUE!

But I think my mother might have been told this at some point, because I can remember her yelling at me, "I am not a bad mother, I didn't make you like that -- you made yourself like that!" At the time, I wondered, "Like WHAT?"

Anyway, we know so much more about the brain now, and genetics. Think about it: DNA was not even discovered yet when we were kids. And there were no MRIs or other imaging tools to observe a living brain. So we know a lot more. But there still is a strong push to "cure" autism instead of living with a child's individuality.

Anonymous said...

Knowledge is power. Perhaps your mother's "giving up" on you was a symptom of her powerlessness. Had the knowledge been available, things might have been very different.

By sharing your story and bringing Jacks story to our attention you might improve the lives of other children.

Again you show us different is not bad, just different.


Yonassan Gershom said...

Tony, I don't know if she was really powerless per se, but she was uneducated. (Though I suppose you could say education is power.)

In her generation (born in the 1920s), seeking psychiatric help meant you were crazy and carried a HUGE stigma. This was still true in the 1950s, plus there was a real fear of being sent to a mental institution.

I do remember the school giving me a huge battery of tests, after which the "I didn't make you that way" stuff started. My guess is, the school tried to talk to her about me, but she just could not deal with it. She simply was not open to psychology, period.

But then again, as I said above, they tended to blame the mothers back then, so that probably put her on the defensive. There's a scene in the Temple Grandin movie where her mother is also told the "refrigerator mom" theory, and she, too, rejected it. But Mrs. Grandin was more pro-active than my mom. She went on to advocate for her daughter. (Temple and I are about are the same age, so we are talking about the same era.)

My mother just sort of gave up on me, probably as a form of denial. But luckily, I was not sent off to some institution, which would have killed my "spark" for sure. I was allowed to live at home and retreat into my world of books and go wandering off in the nearby woods, and that's what saved me.