HECKENLIVELY ON THE OMNIBUS AUTISM PROCEEDING: 5/21
DAVID KIRBY: FEVER, VACCINES AND "MITOCHONDRIAL AUTISM"

TODAY JOHN ELDER ROBISON CAN LOOK ME IN THE EYE

RobisonWhat 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.

Comments

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Jocelyn Abao

Hello, can my son be treated with TMS too? He is 21 years old. Please.

andrew

My name is andrew Shepard im a senior at lincoln high in rhode island and im doing my senior project right now and i have to pic a topic to do it on. I chose aspergers because i have this disorder and whould like to learn more about it. this is my core question What are the necessary accommodations for a student with aspergers to be successful in school? If you have any information that will help me in this that would be great. please email me back thank you for your time

Elizabeth Hensley

What I absolutely LOVE about this is the part where it says he did not lose his brilliance in other areas. Because if this article had not made that clear there is NO WAY I would have let anyone do this to me. Knowing that I am so very eager to figure out where to get this and how to fund it. I have gifts I would not trade for all the social skills in the Multiverse! See my websites.

Michael Forbes Wilcox

Kim, I have my own version of the story at http://www.mfw.us/rTMS-experience

I completely agree with your assessment of John's change.

Very exciting!

And, yes, there are serious ethical issues involved here, and some risk. Still, I plan to continue to be involved. At my age, I have very little to lose and probably a lot to gain.

Lindy Schultz-Holcomb

WOW!...I am a mom to a 17 year old boy who fell into Autism at 18 months and then lost all speech after a tetanus shot at age 3. He still does not talk(He has spoken 11 words total in 14 years)He has no academic, self help or social skills, although he looks like a typical good looking 17 year old boy. Through researching for my son, I have figured out that not only is my older brother(57) very obviously undiagnosed ASpergers...but also myself as well. I know exactly how John has felt throughout childhood...I have always wanted to have friends, but could never figure out how...I have always tried to find ways of "getting out of myself." When you get into adult hood you learn how to live a solitary life. I find it hard to make eye-contact, do not like touching people or for people to touch me....and the excrutiating thing is...I DON'T KNOW WHY! I have 3 beautiful teenaged kids, but rarely hug them , and I really hate myself for that. I just don't think of hugging I guess...I LOVE my kids more than life and I hope they know that...I have hugged them while they are sleeping, getting up realizing I forgot(again) to hug them goodnight...One positive thing is that I feel that I understand my son more than anyone else ever could...I promised him I would never give up, that I would find a way to get him out of his Autism, and he rewards me with a huge smile...I would like to get him into this study...and me also, so that I can better FOCUS to help my son. Lindy

John Elder Robisn

Kim, if you go to my blog today there is a post with video clips before and after TMS, and I think the difference is pretty striking.

Carlene Chavez

He looks peacefully instead of stressed! Thanks for sharing this amazing story.

Nicole Beurkens

This is great, but there is another way to accomplish the same results without having access to the advanced technology described! We have seen changes exactly as you described here through using the Relationship Development Intervention (RDI) approach with children, teens, and adults. What you say about remediation of autism is true - it can, and does, happen! We have to look at treatment with an eye for understanding what the core deficits are and how we can help an individual overcome the obstacles as opposed to just compensating for them. This is where "traditional" autism treatment/therapies have failed us.
Nicole

Contact the TMS Lab

Here is the contact us info from the TMS lab. I found it by clicking onto the TMS Lab link in the article.

http://tmslab.org/contact-us/

Good luck. Hope the person gets relief.

Marci M. Enos, Ph.D.

How does one get into the study. I have a great (adult) candidate, not only an Aspie but also depressed.

Lisa

What a fantastic story Kim. This is really amazing. And a special thank you to John for sharing it with us. This story will provide much hope to families that only wish to help their children.

Questions?

Thanks John Robinson for answering my questions.

This comment -

"* At this moment I have ridden the change for a month. It's not "they" who have to back off . . . it's a mutual decision based on hos I feel. No one forces anything upon me."

surprised me. We come from a subset of the population where a "medical" regimen is forced on our kids, whether or not their fragile immune systems are in a position to withstand it or not. Heck, they take our kids to court and vax them against parental wishes. Happy to hear there is someone somewhere that allows for patient choice and is flexible enough to accomodate those choices.

Glad to hear you are doing well and liking the change :).

John Elder Robison

Questions? posed a few questions for me. I'll try and answer . . .

At what frequency do they have to get these treatments?

* We do not know the frequency yet. I have received one treatment in each target area, and a month and a half later, the principal effects are holding and possibly increasing.

Will it be permanent or require re-treating? No one knows. Will the effect be the same on others with autism? We've seen effect in other study participants. We need to do more tests.

Is the effect of the TMS lasting or will it wear off after a while? What's going to stop the brain from going back to where it was before treatments began?

* I sort of answered this above. In my case, I think the thing that stops my brain from reverting is the knowledge that there's a better path for me, so I fight to keep it.


How is he coping with the change in his emotional make-up, this has to be hard to deal with. In other words, is there some bad stuff that he's not telling us about ;)?

* There has been some period of adjustment, but so far, it's integrated into my psyche as if it were always there. At this moment, there is no bad side I'm hiding.


When do they intend to back off and let him ride out the change - I hope they intend to do that if this is experimental. You would not want to push too much since you don't know what the long term effects are going to be like.

* At this moment I have ridden the change for a month. It's not "they" who have to back off . . . it's a mutual decision based on hos I feel. No one forces anything upon me.


Lastly, how much will this cost the average Joe?

* It's too early to speculate on cost. TMS is used for depression, though, and for that the costs are a few hundred dollars per treatment.

nhokkanen

This story gave me goosebumps. How wonderful that he is enjoying his newfound abilities. I hope that other consenting adults will have similar opportunities.

People with clinical depression lose abilities and emotions, and sometimes gain them back with medication -- a joyous reuniting with oneself. I wonder what it's like to feel something you've never before experienced....

Kim Stagliano

The study is very small to start. Adults who can speak and relay their changes to the team. John will blog as they decide to accept lower functioning adults and children - children pose an ethical problem. Only pediatricians are allowed to test them with unproven products like Gardasil on a regular basis. Whoops! Did I say that? ;)

Jim Witte

As for how much it will cost the average Joe? Same answer as everything - whatever the market will bear. With the drug companies in charge of everything? It will probably never get out of the lab.

TMS is already approved in Canada for treatment of depression, so I suppose DAN! docs there might be able to use it off-label if the off-label rules are the same as with the FDA. Here, the FDA approves *deep-brain implantation* of electrodes for depression, but won't approve a totally non-invasive treatment! Makes me sick..

This brings up an interesting idea - could the action of TMS in Asperger's and in depression be linked? Oxytocin is also used to treat ASD, and that neuro-hormone is also involved in the brain centers that mediate emotion and depression..

Gail

Are there any age requirements for these treatments? Are there any side effects?

KarenAtlanta

We have seen a similar situation with an adult Aspie in our city receiving biomedical care with a DAN doctor and HBOT. It's quite miraculous and kind of blows away any notion that there is a ceiling for recovery.
Go Harvard!

Questions?

Thanks Kim, interesting. And I have some questions if John Robison can answer them.

At what frequency do they have to get these treatments?

Is the effect of the TMS lasting or will it wear off after a while? What's going to stop the brain from going back to where it was before treatments began?

How is he coping with the change in his emotional make-up, this has to be hard to deal with. In other words, is there some bad stuff that he's not telling us about ;)?

When do they intend to back off and let him ride out the change - I hope they intend to do that if this is experimental. You would not want to push too much since you don't know what the long term effects are going to be like.

Lastly, how much will this cost the average Joe?

Harry Hofherr

Kim, this is so encouraging I can't describe it. Thanks for telling us all about it.

Kent Heckenlively

Kim:

That is just staggering and so hopeful. Especially given John's high profile because of his book I think this is going to have an amazing effect. I'm going to print a copy up now for my lovely wife to read.

All the best,
Kent.

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