Tuesday, June 10, 2008

The challenge and opportunity of autism from Medill at Northwestern University

A few weeks ago, Dianna Heitz of Northwestern University's Medill School drove up to film me for a story on Asperger's. She's got a brother on the spectrum, so she had a personal stake in the story, and she did a really nice job.

It's called The Challenge and Opportunity of Autism

http://news.medill.northwestern.edu/washington/news.aspx?id=93475

Here is a story about the making of the story . . .
http://news.medill.northwestern.edu/washington/news.aspx?id=89355

But there's another story in the background, and you'll have to watch several videos to figure it out. Watch me in the video link above. Then go to the links below, and watch me on television this past fall and winter. Look for the changes . . . what do you see?

http://www.cbsnews.com/sections/i_video/main500251.shtml?id=3317288n

http://video.google.com/videosearch?hl=en&rls=WDIA,WDIA:2008-22,WDIA:en&q=john%20elder%20robison&um=1&ie=UTF-8&sa=N&tab=wv#

http://video.google.com/videosearch?hl=en&rls=WDIA,WDIA:2008-22,WDIA:en&q=john%20elder%20robison&um=1&ie=UTF-8&sa=N&tab=wv#


I'll tell you. All the links above were filmed before TMS. The Medill interview at the top is post-TMS

So you'll see the results of the TMS experiments, just as Kim Stagliano described on Age of Autism last month. Take a look at both and tell me if you see any changes. I think I do, but I'd like to hear what you all think.

So please let me know . . . . I'll hold my breath . . .

28 comments:

Cindy said...

I see it - I most definitely see it.

momof3feistykids said...

Yes, I see it too. The difference is pretty dramatic.

Ellen Zschunke said...

I see it as well - in the videos before the TMS, you seem uncomfortable in your own skin and afterwards there are just mannerisms and tone of more natural conversation. Kudos and thank you for sharing your journey!

Kim Stagliano said...

Hey, John! I know you did most of your work for heavy metal bands like Kiss, but after seeing you in person, I must paraphrase the Monkees: "Then I saw his face (do doo doo doo doo doo) now I'm a belieeever!"

Here's my post from last month that John's references from Age of Autism:

http://www.ageofautism.com/2008/05/john-robison-ca.html

He's "top of the blog" today too. This research is too astounding for mere words. It gives a Mom hope, and really, who doesn't deserve hope?

Polly Kahl said...

Having seen your videos along the way and your debut at the NYC B&N, but mostly from having lunch with you last Aug 31, I think the change is astounding. Really astounding. It shows in the last two pictures of you posted here as well. You're connecting on a whole new level.

pogosplace said...

I definitely see a change.

Is it the TMS or simply a new comfort in your old skin with the public persona?

Either way, I am grateful for your customer who broke the rules for psychologists interacting with friends and I am particularly grateful for you for sharing it all with us.

Woof!

Helen

megiammatteo said...

I can see a difference - post TMS you just seem more relaxed and also it seems that you are able to speak with more ease, as though the words were coming more easily. This is wonderful, thank you so much for sharing your experience - this is incredibly helpful and hopeful.
Moira - mom of 11 year old with Autism.

kevathens said...

I'm, like, completely jealous.

Ronald said...

John,

On a scale from 1 to 10, your body language increased from 2 to 8.

The inflection in your voice increased in range. The timing/rhythm/cadence of your voice has become more relaxed and expressive.

Before, your hands and arms were fairly motionless when emphasizing a point. Now you have meaningful gestures that are naturally timed and they compliment the expression in your eyes, in your voice, and on your face.

Your gaze is less penetrating (or locked) and more emotive.

Before, your mouth/lips/jaw were tense and the expression accompanying humor might easily have been mistaken as a snicker -- now you flash a more relaxed smile in those quick moments.

Overall, the before videos gave an impression that communication was laborious -- the after video shows that communication 'just naturally happens' while expressing purposeful thoughts.

It would be interesting to know if you experience sleep differently now too (change in dreams perhaps or level of restfulness), and whether you perceive your environment differently. I'm inclined to believe that many pathways have opened up at the same time as the ones responsible for improved expression.

Congratulations and thank you too for sharing your journey in order to help others.

Kathryn said...

Wow, I agree with Ronald - what he said! I am interested in how you feel it has changed you.

angelsfree2be said...

You seem more relaxed--conversation seems easier. Do you feel the effects of TMS are lasting/permanent? If not, how long does it last? Watching your before and after videos, TMS seems very promising. The very best of luck to you John and please keep us posted.
Sherry

fromitaly said...

Sincerest thanks from parents of children with autism in Italy for having shared this amazing transformation!!!
Evviva!
Ornella, from www.emergenzautismo.org

Tiyanasmom said...

Yes. There is a difference! You seem more comfortable and relaxed since your treatment! I want to see if I can get that treatment for my daughter!

The Anti-Wife said...

Hi, John! You do seem more comfortable now.

cblakey said...

Wow. The difference is striking. You look different, but how do you feel? Can you go into more detail about the treatment? Thanks so much for reporting on this. It is very encouraging.
-cblakey

deenonna said...

In the Northwestern video, you were very engaged with the interviewer and showed emotion in your voice. The words flowed so easily and you seemed very relaxed. Yes John, there is a dramatic difference.

I am new here and look forward to hearing more about TMS. Thanks so much for sharing your experience. I look forward to meeting you when you are at St. Charles, IL in the fall.

Dee - Grandma of 9 yr old with Aspergers

Michael said...

John,

I have not only watched your behavior evolve over the past few months, I've commented on it on my own blog.

See http://www.mfw.us/rTMS-experience

I attribute part of your change to the practice you've gotten in public speaking; I know from my careeer on Wall Street that one can learn to fake it pretty well after enough experience.

But, I also noticed a dramatic difference in your ability to make eye contact after the TMS experience. I don't think that's something you can "learn" as quickly as you did just by practicing. I think some circuits in your brain were strengthened (if that's the right word) by the TMS.

I'm very excited by the research being done.

My brother (one of two) just had a stroke a few days ago, and lost his ability to speak. It's slowly coming back, but he remains paralyzed on one side of his body. If he has trouble recovering, I might see if he is eligible for TMS treatment/experimentation. This incident has made me appreciate the work being done at the TMS Lab all the more.

Cheers!

kbasinger said...

I think your talking seems more fluid. You didn't hesitate as often and appeared more comfortable and personable. Awesome!!

drewdude52592 said...

I don't know if u read these comments but i just want to say i'm a big fan. I'm actually a sophmore (soon to be junior) at the same high school you went to for that one year and i'm also a person with asperger's syndrome. When my mom recommended your book Look Me In The Eyes to me i was a little skeptical since i've read many books about people with asperger's and didn't really like em too much, but i gave the book a try

My god was I impressed. I can't believe all the things you've gone through. It was as if some kind of god saw all the troubles you went through with your mom and dad and decided to give you the best life any person with asperger's could live. I mean come on now, how many people are given the chance to be a roadie for those two unbelieveable rock bands? You're one heck of a lucky man.

Reading the final chapter where you talk about your father's death made me sting inside. I recently lost my father, but it seemed like i was unable to feel anything at all. You were very brave to deal with all the pain that was inside you during those final minutes. Something I felt that I should've dealt with when i saw my father for the last time.

I just want to sum this up by saying that when i grow up, I want to have similar success that you gain through the years. And if it means to deal with nasty people or to go through heartbreak or any of those things, then I'll face it and come out on top because after reading about your experiences with that, i know that even a person with asperger's could tough it all out. Thank You Mr. Robison

-Andrew

Kim Stagliano said...

Andrew, I'm a Mom of three girls with autism (not Asperger's) and your insightful, heartfelt comment here just made my day. I'm sorry you lost your Dad.

Kim

Strange Behaviour said...

I hope you had a very happy Father's day. I think all parents raising kids on the spectrum deserve to be extra-happy!

John Elder Robison said...

Andrew, I do read the comments, and thanks for your letter. If you're in Amherst High, do you know about AANE? If you're involved, perhaps I'll see you at one of the functions

Polly Kahl said...

Andrew, I agree with Kim, that was a wonderful comment. I have a close relative with Asperger's. He's now 50 and is brilliant but functions on a daily basis at a very low level. I noticed that like him, you communicate with written words very well. You'd never know you're Aspergian from your writing. Thanks for sharing and I hope you get to meet John one day. He's a sweetie and a great role model. Good luck to you, and keep writing!

Theresa said...

Mr. Robison, I see the differences too although maybe they don't seem as dramatic to me because I've not seen many videos of you and don't know you personally as some members do. However, I too am curious exactly how long the effects of TMS are expected to last. If the effects are expected to last long term or permanent - even if they are short term the treatments could be effective in aiding speech therapy and social skills therapy. I think those suffering from AS could pick up these skills faster with the aid of TMS, allowing people to appear more like their peers socially sooner rather than after years of training or practice.

As a side discussion, do you often or have you ever had people say to you "I don't know how to take you" or something to that effect because you're too quiet or your facial expressions are not descriptive enough? If so how do you respond to that? I heard that recently and have from time to time over my life and I find it an annoying remark. Then I feel obligated to work harder to present myself more friendly and easy going and kind of resent that I can't just be my quiet(sometimes) self and sit and observe what's going on around me.

How do you handle so many public appearances? Don't you get into moods in which you really don't want to have to go out and socialize? Or are you able to just show up wherever you are told? How does that work?

Sorry if I'm prying too much I have no one else to ask these questions....

Theresa

drewdude52592 said...

actually john, i've never heard of AANE, but i'll def look it up thanks!

Wenshine said...

I also see the differences the others have posted - great descriptions, ronald and michael. In the pre-TMS videos I see a subtle rigidity and deliberateness, a certain discomfort in the body language and cadence of speech, and what appears to be eye contact through an act of will rather than a natural engagement. (These jump out at me because I see very similar things in my undiagnosed husband.) In the post-TMS videos, there is a definite ease that was not there before, eye contact that seems much more natural (ironically by not always being direct and constant) and just the slightest smile at appropriate times that was absent in the earlier videos. The body language telegraphs more humor - there's even an interesting twinkle in your eye when you talk about being called a monkey face or worrying about people laughing at you after writing the book, conveying the irony in how things turned out. I hope that's what you meant to convey... Fascinating.

I wrote to you recently about my husband and my dawning understanding of his Aspergers. I don't know if your writings will help him, still so very resistant to any self-assessment or exploration, but they certainly have helped me tremendously. I hope you will be speaking in Maryland some day. (Are Hopkins or U of MD doing TMS studies? Just in case my dear man comes around...)

Kellie said...
This comment has been removed by the author.
Kellie said...

John,
Do you know of any current research about the genetic link between Geniuses and Aspergians?
Kellie