Wednesday, May 28, 2008

Robison

THIS IS FROM www.AGEOFAUTISM.com and TOO COOL not to share here!!! Many of know John, after all!

What I'm about to write will be astounding to all of you, too good to be true to others and (sadly) heresy from some who'd prefer to keep autism treatment at a stand still. You ready?



How's this quote from John Elder Robison, Aspergian and author of the best selling, LOOK ME IN THE EYE, to whet your interest: "Science is making real solid progress to remediating some symptoms of autism." Let me repeat that: "REMEDIATING SOME SYMPTOMS OF AUTISM."



My version of the quote goes something like this: "Holy $#it! John, my tall Aspergian friend, is making perfect eye contact with me, he can read my emotions in my face and he is animated! How the heck did that happen?"



Let me back up for a second here. Last night I spoke at the monthly meeting of ASCONN, the Autism Society of Connecticut, greater Hartford region. Thanks to Beth Katten and Melissa DuMont for coordinating the meeting (and the taboo Wheat Thins.)



I was scheduled to present with CAMMIE McGOVERN who, like me, has a chapter in Embracing Autism. Cammie had a family emergency and couldn't attend. So I called my friend John Elder Robison. "John, what are you doing tonight? Want to come to Hartford?" I asked with my fingers crossed. "Sure! I'll tell the group about that new study at Harvard."



John is the master of understatement. That new study is testing Transcranial Magnetic Stimulation on several people with Aspergers and the results have shocked everyone involved. People who were unable to make eye contact, read facial expressions and empathize are suddenly able to do all three. Without losing any of their keen intelligence or in John's case, their wit.

I saw John last night for the first time since last winter. I can see real, physical changes in him. It's crazy! His voice modulates up and down. His facial muscles move more than they did, showing emotion. When we first met last spring, he told me he had trained himself to glance into someone's eyes every 30 seconds or so, just for a moment, to establish an appropriate social rapport. He had trained himself to do that. It wasn't natural for him. Last night, he looked straight into my eyes while we spoke without flinching. (Now that makes a girl feel good! LOL!)



There were at least two people in the audience who had met John and me last December at an event at Elms College, and they too were taken by the visible changes in John. One gal said, "You don't look at the floor when you speak anymore."



Yup, John Elder Robison has had some of the symptoms of his Aspergers reversed in a trial that is currently underway in the Harvard University Neurosciences lab. Here's the story:



The study is being conducted by Dr. Alvaro Pascual-Leone who is a Professor of Neurology at Harvard Medical School and Director of the Center for Non Invasive Brain Stimulation at Beth Israel Deaconess Medical Center. (TMS Lab) The tests are scientifically trackable and verifiable as eliciting real changes in the brain. Functional MRI proves it. The treatment is non-invasive and painless. My insufficient summary of the theory behind the study is that everything our kids/people with autism need to function is in their brain intact. But that our kids are running the "wrong software program" and thus are impaired. TMS allows the brain to run the proper software. In other words, our kids are NOT brain damaged and their wiring is just fine, they just aren't using the tracks they need to. And the proper tracks can be turned on!


After hearing of John's experiences, the scientists were stunned to hear other study participants describe new insights into their own emotional intelligence. One participant told of reading the emotional meaning in sentences for the first time, and another talks of "seeing what I'd been missing." Can you imagine the impact of that? It takes my breath away. It appears that the test subjects who have seen results are very pleased with their newfound abilities. In other words, losing some of their autistic traits has not diminished them.

Even better, the doctors never expected the results of this treatment to last more than a few hours at most! And yet, they are lasting far longer for John and the other participants. Currently, more than a month.



You can learn much more than I can explain at John's blog HERE. He expects this story to hit the mainstream media perhaps as early as this Fall. The testing is being done on verbal adults at this time. But the researchers will likely add more significantly impaired people as the tests progress. Perhaps including children at some point, if ethics allow.

I can't tell you how beautiful it was to watch John talk to me with full on eye contact. Not because I didn't enjoy my friend exactly as he was when his eye contact was fleeting. Not for a minute. But because he is obviously so pleased himself. I asked him, "So, what color are my eyes?" (He'd said that prior to the test he could not tell you people's eye color.) "Blue!" he said with certainty.

I'd like to thank John for allowing me to share his story here at Age of Autism. I've made a few changes to the original piece with John's input. Mark Blaxill is our science guy and now I know why. But I'll keep you posted on developments.

Here are some photos that illustrate the changes in John. The one below is the first time he and I met last Spring.





Johnandkimmeet_2

Here's a photo from the Book Expo America in NYC last June. Note the similar facial expression in John.



Kim_and_john_bea

Now look at this recent photo from his blog. And take a look at his face.



John_smiling



What do you think? See a difference? (Um do you think it's just me? I made him look so serious?) ;)




Kim Stagliano is Managing Editor of Age of Autism.

13 comments:

Trish Ryan said...

Wow--that is so incredible! Thank you for sharing this. You must be so encouraged!

GFCF Mommy said...

Oh, Kim, this takes my breath away! How exciting! I also read John's blog about it. Truly fascinating.

Katherine

Amanda said...

HOLY COW!!!

So your saying we just need to reboot them? Turn them off and on again? That's just brilliant!

Kim Stagliano said...

Brilliant. Painless. Non-invasive. Safe (so far.) And the best part, the PHARMA companies can go F themselves!!!Just wait to see the FIGHT they put up over this. Drug free CURE? Makes Autism Speaks' Prozac study look archaic.

Kathryn said...

This thrills me to no end. I will check out John's blog. I can hardly believe it!

Robin said...

Wow, it is like medicine on Star Trek.

Kim Stagliano said...

Robin, you're exactly right! Live long and prosper.

Michelle O'Neil said...

Smiling happy here.

Like John in the last photo.

The Muse said...

Hey Kim,


It was great to see you last night. John had told me that you were going to be in town so I thought that I would surprise you. I wished that I could have stayed until the end so that we could have talked; but I had a babysitter for my son so I had to leave to get home. I wanted to see your reaction to the changes in John's personality since the TMS. It is wonderful to behold, isn't it? He seems SO happy and bubbly. He is far less serious and brooding. He even laughs now and jokes around. It is like he has come to life and blossomed. I KNEW that you would be impressed with his progress. Imagine what this research is going to do for the treatment of not only autism, but depression, stroke victims, and other neurological disorders.


I am filled with hope.

Kim Stagliano said...

Hi! I nearly fainted when I saw you sitting at the table! Still gorgeous, woman.... YEs, the changes are almost surreal. And the best part is that John is so happy about it. All gain and no loss. What could be better? The eye contact is mind blowing. The voice change. The animation. Look at those photos from last summer. From a handsome stoic man to a handsome engaged with the camera man. I can't wait to learn more and I'm so grateful John let me share the story.

K

The Muse said...

Hey Darlin'

I KNEW you'd be excited by his progress! I came to witness your reaction and had hoped to share in the discussion. This is a real breakthrough for autism -cutting edge neuroscience. I am SO psyched by the possibilities of this research. The results of this study also reinforce the concept of the power of positive thinking with hard scientific data. Neurons that fire together wire together. Thus, as they say in my church, "Thoughts held in the mind, reproduce their own kind." And "Whatever we think about expands." This research confirms what theologians have been preaching for centuries. The complex architecture of the brain has evolved to bestow upon us many innate gifts. Einstein believed that as a species we only really utilize only 10% of our brains power. Moreover, the human mind has the potential of many savant like abilities. Carl Jung referred to it as the "Collective Unconscious". We just need to learn HOW to tap into these immense powers of collective intelligence, i.e. "The Kingdom of Heaven is WITHIN us."

TMS may be one way to awaken this dark matter in the brain.

kyra said...

it's true! i had lunch with john a couple of weeks ago and i could easily see the difference!

it's very exciting!

i LOVE that science is now supporting what those using RDI have already seen (though MUCH more gradually), that remediation of autism is possible and IS HAPPENING!

Anonymous said...

I'm happy for John. I guess you know that in some cultures looking someone in the eye, especially someone considered to be in a superior position like a boss or a teacher, is considered rude.
Dogs find prolonged eye contact to be a form of aggression. My standard poodles use a sidelong glance unless they're feeling very playful and secure. It's what feels natural to them.
Many people find it hard to carry on a conversation while making eye contact. There's nothing wrong with them. I don't feel insulted or offended if someone prefers not to make eye contact with me. I'm usually so deep in my own thoughts that I don't even notice.