Tag Archives: Wrong Planet

Epidemic of Genius

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 correctit’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

The Third Glance, Theory for Autism and Flying

Two things – the first is that I wanted to mention a post I loved reading, written by E. of The Third Glance –  a 22 year-old autistic adult.  Her “Growing up Autistic: On Nature, Nurture and Abuse” piece is powerful, heartbreakingly honest and written with elegance.  Hers was one of the stories I was referring to when I wrote in the Evolution of a Perception post, “The abuse, the prejudice, the cruelty all of these austists have endured is staggering.”  Richard and I also loved her post – My Cat Is My Hero.  It’s beautiful, but then so is the writer, E.

The second thing I want to mention is an interview with Henry and Kamila Markam about The Intense World Theory for Autism on the blog – Wrong Planet.  It’s interesting, problematic in that I worry it will be misinterpreted by some, (leading to the type of  universal parental blame demonstrated by both Kanner and Bettelheim) but this quote was such an amazingly accurate description of what I’ve always suspected Emma experiences, I had to read it twice just to be sure I’d read it correctly the first time.

“The Intense World Theory states that autism is the consequence of a supercharged brain that makes the world painfully intense…”

They go on to say – “The theory was triggered bottom up from neuroscientific studies and the real changing point for us was when we found that fear memories were so quickly acquired, lasted longer, were difficult to erase and over generalized. This put all the results into context because the neocortex could render the world intense, highly fragmented and overly specialized while the amygdala would dial up the emotional component of the intense world making it potentially extremely painful and aversive forcing the autistic child to take refuge in a secure bubble. If they don’t succeed to take refuge through repetitive behavior, routines, rocking, and other types of behaviors, then they may display self-injurious behavior – like ants crawling all over your body. The diversity comes from the fact that we are normally diverse and if you add hyperfunctional circuits to that then naturally each autistic child will be even more different from each other. It is like taking all our normal differences to an extreme. This challenges society to accommodate autists, but diversity is the key to social evolution and so it is a good challenge.”

We are flying out to Colorado this morning.  I wasn’t able to get a single seat together.  I even called the airlines and begged them to do something. I told them we were flying with two children, one of whom is autistic, but they said there was nothing they could do.  We aren’t even in the same rows!  Wish us luck.

The Evolution of a Perception

As I wrote yesterday’s post about Emma’s progress in the past year, I realized how much my perceptions and views have changed since beginning this blog.  When Emma was first diagnosed I cycled through a series of emotions fairly quickly.  Some, like guilt, grief and anger hit me with a violence that took my breath away.  Others ebb and flow, while still others, like acceptance, came more gradually, but all of these things continue to change.  My ideas about autism, what that means to Emma and to us have changed.  I no longer believe there is a neuro-typical child named Emma hidden beneath guaze like layers of autism.  A child who, if we could just find the magic thing that would remove the autism, would emerge, intact, speaking in beautifully, articulate sentences, a child who would suddenly converse with us as though all these years had been silent practice for her grand debut.  I do not believe we can extricate Emma from her autism.

I have gone from thinking it was wrong for me to slap such a potent label on her, that it was kinder, gentler, more empathic to say – my daughter has autism – than to use, the more blunt and direct, “she is autistic,” to the question I now find myself continually asking – what would she say, if she could?   I don’t know.  Until she tells me, I cannot know.  But I won’t stop trying to find out.

In my search to understand Emma, I have found voices, and there are dozens and dozens of them out there, autists who, now in their 20’s, 30’s, 40’s and 50’s have blogs where they articulate what many cannot say with spoken language.  These are the so called “high functioning” autists who can communicate, some not verbally, but who have found ways to communicate through typing and other forms of communication.  Their opinions, their voices, often poetic, at times angry, despairing, brutally honest, always insightful, are making themselves heard through their blogs.  Finding these sites has been akin to learning there is a vast alternate universe.  There is so much I did not know, do not know, but want to learn.  Over the course of the past eight years, with the sole intention of helping my daughter, I have done almost every single thing many speak out against.  I didn’t know.  I thought I was fighting for Emma.  I thought my focus on a “cure” was a good thing, the noble thing, the thing that would release her from the bondage of autism.  It never occurred to me that my focus could be perceived as a kind of bondage in and of itself.  By the way, I am not beating myself up over this, or more accurately am trying hard not to, but am doing my best to listen and learn.

I know I’m wading into tricky territory here, with many differing opinions about “cures” and how that word is negatively perceived by those on the spectrum, and I don’t want to get into the semantics of it, only to suggest it is a dialogue that is important.  It is a dialogue I am trying to understand.  I want to understand.  One I hope I am coming to understand.

The abuse, the prejudice, the cruelty all of these austists have endured is staggering.  One of my favorite blogs, by the incredibly talented Julia Bascom, called Just Stimming is filled with such pain.  She writes so beautifully and with such honesty, I read her words and feel overwhelmingly grateful for her voice.  E. is another such voice with her blog, The Third Glance.  Then there’s Landon Bryce, who’s blog ThAutcast is peppered with youtube videos of himself talking.  Provocative,  passionate, he is always interesting and someone I would love to have a conversation with.  There is LOVE-NOS, a group blog with three authors sharing their views and thoughts, one of whom is Julia Bascom. Another group blog, Wrong Planet describes itself as – “a community designed for individuals (and parents/professionals of those) with Autism, Asperger’s Syndrome, ADHD, PDDs, and other neurological differences.”

The point is, these sites are educating me in ways I could not have imagined.

Someone named Kathryn commented on another blog:  “Here are two broad categories of parent attitudes about autism. (Others may exist, but these are common and pertinent.)

1. I want my autistic child to function the best he/she can, and will do anything I can to help him/her overcome the difficulties posed in his/her life by autism.

2. I want to have a normal child and will do anything to get rid of this autistic child’s autism, because then I’ll have a normal child again.”

I aspire to be the parent described in #1.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

Emma during gymnastics last Sunday