Below is another epic length post from Richard. You have been warned!
I’m a science nut. Ariane, not so much. I constantly pester her with the latest science news I’ve gleaned from books, articles, documentaries, the Internet. I just can’t get enough of that crazy science stuff. One of my greatest frustrations is that I have some kind of math glitch in my brain which prevents me from learning much of what interests me, especially the nuts and bolts of physics and of course, higher mathematics — which I would really love to understand. Despite my brain-freeze, or math dyslexia, or whatever it is — I love numbers. I’ve even been known to do numerology readings. In short, I’m a seeker. Like many other non-scientist science lovers, I want answers to the BIG questions. Why are we here? What it’s all about?
For people like me, “What if…?” is a favorite lead-in phrase. When I heard Henry Markram’s TED talk and then read his Intense World Theory for autism and an interview where he theorizes that all autists could be genius savants and (here comes the real mind-blower) autism may be the next phase of human brain evolution – well, my mind grabbed that football and ran for the goalposts.
What if the Intense World Theory is correct? What if Markram is also correct in his theory of autistic genius? What if Emma is a genius savant too? What if all her friends at school are? What if every single one of the autists born every year are geniuses, or savants or genius savants? What if the staggering ONE PERCENT of infants now born every year with autism are ALL genius savants? What if new learning therapies like Marion Blank’s system catch on, and a whole lot more of all those savants born every year are able to communicate all the knowledge and insights they possess.
What if…(add your own far-fetched speculations here).
Well…if Markram is correct…it’s a massive game changer…for all of us.
Here are some staggering stats: it is currently estimated that 2.2% of the human population possess IQs of 140 or more (the extremely arbitrary genius IQ cut off). Since the world population recently topped 7 billion (and since I suck at math I’ll gladly use that nice round figure), then 2.2 percent of 7 billion equals 154,000,000 million geniuses walking around. And since IQ tests for autists are notoriously inaccurate (particularly for those who are non-verbal) – then many adult autistics and those born every year will not be crowned with the genius laurel wreath, yet nonetheless they may possess staggeringly high intelligence coupled with the uncanny insights that their unique perception of the world provides them.
The annual birth rate is now between 19 and 20 million people. One percent of those babies will (eventually) be diagnosed as autistic. What if every single one of these 190,000-200,000 autistics turn out to be genius savants? What could be accomplished with that kind of creative horsepower, if acceptance and encouragement furthered their interests and yes, obsessions? Or at the very least, what fruits might be harvested if they weren’t bullied, teased, ridiculed, marginalized and segregated? If their abilities weren’t so consistently and grossly underestimated?
It’s something to think about. I’ve been thinking about it all the time now.
When Emma first received her diagnosis, I knew next to nothing about autism. I just knew it was bad. A terrible tragedy. The loss of our hopes and dreams for a ‘normal’ life and a ‘normal’ family. Something to grieve over. As the years went by, my perspective gradually shifted. Emma’s nearly continuous blissed-out happiness and her mischievous sense of humor made it a lot easier for me to deal with all the difficulties she had with sensory issues, changes in her routines, communication problems, etc., etc. — and all the difficulties I had coping with them.
Since we found a learning therapy that actually works, my fear-based perspective has altered dramatically. Emma can read, write, add, subtract and speak in complete sentences. She loves to learn. She carries her favorite books around everywhere. With the recent oxytocin boost, we now walk down the street hand-in-hand – a behavioral shift as radical and unexpected as it would be for me to teleport to Mars.
Now Ariane and I are blissed-out with happiness much of the time. Our exposure to the writings of adult autistics has been as consciousness expanding as anything we’ve ever experienced. Beautiful voices telling sad, poignant, frustrated and hysterically funny stories of what autistic life is like from the inside. WrongPlanet introduced us to Henry Markram’s Intense World Theory for Autism, which have radically altered our perspective – permanently, I hope.
The epidemic of autism has been a rallying cry for myself and most parents of autistics who were and/or are desperate for a cure. If we hadn’t discovered Dr. Marion Blank’s program I might still be feeling the same way. If I hadn’t read Henry Markram’s theories I would never have entertained the possibility that the epidemic of autism could also be the epidemic of genius – a phrase I keep repeating over and over like a mantra.
What if? What if?
In the not very distant past, nothing short of a complete cure for autism was an acceptable goal. My goals are different now. I know Ariane’s are too. We want more effective treatments, therapies and learning programs that help autistics cope with the difficulties they face and make it easier to navigate in a world that doesn’t necessarily correspond to their perspectives. We want more research into the causes and the neurological differences, not so autism can be prevented or eliminated, but so the difficulties can be mitigated. We want ‘normals’ like ourselves to be more kind, compassionate, helpful, encouraging, inclusive and aware that the kid or adult they are looking at as a weirdo, gimp, or even a retard, might well possess intelligence far in advance of their own. They may be more sensitive, insightful, kind, creative and inventive than those whispering, pointing their fingers, snickering or simply turning away because all they can see is the ‘handicap’ – and they cannot bear to look at it.
When Ariane was pregnant with Emma and Nic, we opted out of having an amniocentesis. The doctor told us that there was a real possibility of miscarriage. “Don’t do this unless you’re prepared to terminate the pregnancy if you find out your baby has Down’s Syndrome. There’s no point in taking the risk unless that’s your intention.”
That was not our intention. We both agreed that, “We’ll take what we get.” We got Emma. And we are incredibly fortunate.
When the human genome was first sequenced it cost over a billion dollars. Now anyone can have their own genome sequenced for under $1,000 dollars. Soon it will cost less than a hundred dollars. Couples wishing to have children will be able to identify every gene marker that may indicate a susceptibility to autism.
With that knowledge will come new decisions. What choices will be made?
Ariane and I still have many decisions to make regarding how we can best advocate for Emma and help her learn and communicate and understand the world she lives in. We want many things for her, but we don’t want Emma to be cured anymore. We want her to be supported and encouraged to learn at her own pace. To express herself in her own unique and wondrous voice. When/if she is able to communicate in the manner of many of the autists whose blogs we’ve been so incredibly moved and inspired by, we want to discover what she has to say about her life, her loves, her passions and fears and hopes.
Then Emma’s Hope Book will be fully her story, instead of our story about her.
For more on Emma’s journey through a childhood of autism, go to: Emma’s Hope Book