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
Emma's Hope Book 
I love reading posts by you two 🙂 This one in particular is great. A very smart man once said: “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” (That man was, of course, Albert Einstein, a person many believe to have been Autistic)…
Honestly, it is my goal for the world to view Autism not as an epidemic, tragedy, and #1 problem to eradicate, but rather a difference that there are tools and therapies available to mitigate so that the individuals who exhibit it are able to function in the best way they can. And I want this before it is possible to test for genetic markers in pre-natal screening. Because *regardless* of whether those of us on the spectrum are all “140 IQ-level geniuses” (wouldn’t that be fantastic?), we all have something unique and important to bring to the world. And that should be maximized, celebrated and honored.
Love this post, Richard. So beautifully reflects what I too, feel.
And E. always love hearing your thoughts on the subject. Your world view is one I absolutely share. Thank you for commenting.
Thanks for the positive feedback E. You have been such an inspiration to me. I wish every parent of an autistic child knew about your blog and took the time to read it.
Same goes for you A! Every word of it!
Dear E,
Your blogs/replies are definitely inspirational. In the future posited by Markram and elaborated by Richard we so called “normal” people because we are the majority, may actually turn out to be the backward ones stuck in “the good old days” when science, technology, spirituality, even quality of life had not been thoroughly explored.
When autists become an evolutionary jump forward into the unknown, but only suspected, education will change, forms of communication will change, and even Richard (and I, although it’s a bit late for me) would be able to grasp the mathematics behind quantum mechanics and string theory!
Keep on posting, Ariane, Richard and E! I love it and can only hope that more every day will receive the comfort and positive outlook on the quality of living that all your messages inspire..
Paula/Mom/Grandma
You rock Richard!! :O)
Thanks so much for you support Becky!
After I read this I had to get up from my desk and walk away for it brought a flood of emotions. I thought about Ted and his experiences in school and their reactions to him and its impact on me.
Ted’s IQ has been tested as high as 160.
That is hard for me to write.
I realized today I have been conditioned to think that is a negative and to be quiet about it. His high intelligence was treated like a condition that needed to be fixed. It caused problems because he wasn’t like everyone else and school didn’t know how to accomodate him.
This morning though I flipped my thinking. I thought about how differently he would have been treated if instead of being a star brain he was a star athlete. Star athletes behavior is often overlooked. Schools cancel classes to have pep rallies for them. Oh my gosh if you are the mom of a star athlete you can talk and talk about your kid. They get write ups in the paper, they even get special clothes to wear so they can be easily identified. No one considers that bragging.
If I told another parent my kid had an IQ of 160 they would think I was a braggart. But I am not saying that to brag, I am saying it just like I say he has brown hair, or can hit free throws, it’s just who he is, his gift, not something to be cured, but something to be crafted.
I say let’s cheer for the unique and incredibly talented brains of our children with autism. There is no fixing required here except, of course, for those who think there needs to be fixing.
Sorry I went on for so long, but thank you for the “aha moment.”
Hi Charlotte! Just saw this comment from you. I am just beginning Rachel Cohen-Rottenberg’s memoir (the second one) entitled, Blazing My Trail: Living and Thriving With Autism on my ipad. (Because I am “thorough,” I am simultaneously reading her first memoir, in paperback, entitled The Uncharted Path: My Journey with Late-Diagnosed Autism.) By the way, Rachel has agreed to write something for the Huffington Post series! Very exciting.
In her book she talks about exactly this. The idea that what in a NT is considered an asset in someone on the spectrum it marks them as “different,” or “weird” or… pick a word. If you haven’t read Henry Markram’s “Intense World Theory for Autism” do. I provided the links in both Richard’s post and on one of mine. It’s a game changer, as they say. Markram even goes so far as to say – autism may well be the next step in evolution – which Richard and I love and talk about all the time now.
Emma is only ten, but she is not at grade level, not close, but she is progressing and while she doesn’t exhibit obvious “brilliance” because of her issues with language and processing, I do not doubt for a second that she is anything but. Richard and my job is figuring out ways and methods to help her brilliance express itself in ways that can be recognized and fostered. Love being in touch with you!
By the way I am having this blog updated and redesigned so that one can subscribe, be notified of additional comments. I will have an archive, a blog roll, and categories to make it easier to navigate. As well as the ability to tweet, (do you tweet? I do but it’s done automatically so I have no idea how to respond to anyone elses tweets and actually don’t know how to tweet spontaneously!) Since I began this blog almost exactly two years ago and post Monday through Friday there are just a tremendous number of posts, making it overwhelming (I imagine) for those who, like me, want to see the beginning, but may not want to spend the next month of their life reading every single post to get there. Not sure why I’m telling you all of this, other than I just went off on a tangent and am feeling apologetic that this blog is so unorganized and difficult to navigate. Oh dear…
Charlotte, thanks so much for sharing your thoughts and feelings on this. I totally get what you’re saying about the jocks vs. nerds mindset of American culture. As a society we seem to value aggression and dominance so much more more than intelligence and compassion. I hope that is changing. I see positive signs of that with young people participating in anti-bullying programs. Yet sadly, just as smart kids who express themselves differently are often the target for teasing, exclusion and derision, the statistics show that autistic kids are bullied much more than NT kids: http://www.huffingtonpost.com/2012/03/28/autism-bully-aspberger_n_1385603.html
Personally, I couldn’t care less whether or not Emma is a genius. I couldn’t love her more or think she’s any more special than I already do. Emma is awesome, plain and simple. Besides, there are so many ways to measure intelligence that are not taken into consideration in standardized IQ tests. We have known for a long time that she has an incredible memory and, near-perfect pitch when she sings. She also has one hell of a sense of humor and loves performing — ask anyone who has been to our house for dinner. In my mind, Emma’s most superlative feature is her inner beauty. She is so incredibly pure and direct in expressing herself — utterly without guile or the need to impress others. She simply is — and what she is — is wonderful. She is so happy much of the time — ‘blissed out’ as I like to say. Sometimes her bliss is connected with movement — on the carousel or jumping up and down in a bouncy castle. Other times she is in bliss looking out a window. She sits there with a huge smile on her face — needing nothing, wanting nothing, perfectly content. To me, the bliss itself is genius. How many gurus and yogis and Zen Masters sit looking at a white wall all day, attempting to free themselves from themselves? One of my favorite Zen master sayings is: No self…no problem. Emma has no problem with her self. Genius.
Richard – such great thoughts. I totally agree with you on all counts. Perhaps my favorite line of all – “Emma has no problem with herself. Genius.” It’s such an accurate description of Emma. And you’re right. It’s genius and so is she!
I will most definitely get the book.
I think we as a society get very caught up on labels – skin color, ethnicity, religion, genius, cognitively-challenged. I wonder if there will be a day when we are all just people, and we present how we present and it doesn’t matter about labels because we see what is most important, our beautiful humanity.
And oh my gosh, the comment about different kinds of intelligence is so spot on. Ted, as I said has a high cognitive IQ, but tests of his social skills and daily living skills had him at an IQ of 48. There was a day when I wished I could take about 50 points off his cognitive IQ and attach those points to his DLS IQ then I thought, maybe then this will all be okay. I stopped thinking that way, stopped thinking about the arbitrary numbers from all the tests, because that was reconfiguring my son, trying to get him to conform rather than seeing and accepting him for who he is.
I love my son just the way he is.
As you love Emma just the way she is.
There is so much beauty in seeing what is.
And there is so much peace that comes from not resisting what is.
And there is laughter. The laughter. Ted laughs more than anyone I know. And Ted has more self-awareness at 20 than I had at twice his age. I tell him he is my mentor and finally at 46 he has said, “Mom, I think you are finally getting it.”
To borrow from Louis Armstrong, “They’ll know so much more than I’ll ever know and I think to myself, what a wonderful world.”