Friday, May 30, 2008

Another participant's view of TMS

I've been telling you about the TMS project for a little while now. So far, all you've heard is my side of the story. Tonight I'd like to share (with permission) the account of one of the other participants in the study. I found it quite moving. I've posted it just as I received it . . . .

Communicating with a Different Brain

Imagine this.

When you are born, you're given a pair of glasses to wear. These are special glasses, which have a patch totally covering one eye. The other eye has the peripheral field of view blocked, so that you have a very narrow field of view. You put these glasses on as soon as you open your eyes in the morning, and take them off the last thing before you close your eyes in the evening.

You also have a little bit of cotton stuffed in your ears, so that you can't hear things quite clearly. As you grow up, your experience is one of seeing a small field of view in just two dimensions. Since you don't know of any other way of seeing, you think that you can see things quite well. You think that everybody sees in this way.

As you interact with other people, you may notice that some people may appear to see differently than you do, or hear things differently. You find that you are very good at focusing in on the details of the small field of vision that you have available to you. You may find it hard to understand why other people don't see the details. When you're with a group of people, it may be hard to follow the conversation, because you don't quite hear clearly. It may also be hard to look from person-to-person as quickly as the conversation moves, since you have such a narrow field of view. It can be quite confusing. You may miss things in conversation.

Imagine what it would be like if you could take the glasses off and all of a sudden see in three dimensions, and notice peripherally what was going on. Imagine what it would be like if you could take the cotton out of your ears, and hear things more clearly.

There are researchers in Boston who have found a way to stimulate the brain in ways which opens up the narrow field of view, and enables one to hear communication more clearly. They are currently working on preliminary studies using noninvasive brain stimulation to influence communication, and I recently participated in a study which was quite remarkable in showing me how my brain is wired.

I wanted to share my experience, in hopes that other people may be interested in participating in these studies, which may prove very helpful in treating communication difficulties.

Those of us participating in the study were given several communication tests prior to and after the stimulation sessions. The tasks included reading sentences, speaking them out loud, and evaluating the sentences which someone speaks aloud. My experience of communication before and after the brain stimulation was remarkably different.

As we went through the different phases of simulation, I became aware that my reading had been rote initially, and I wasn't getting the full meaning out of what I had been reading. After the brain was stimulated, I started getting more meaning from the sentences. At one point, I was also able to understand the emotional content of sentences, which I had not been aware of previously. It really felt like I had been seeing in two dimensions, and could now see in three dimensions.

After the final simulation, I realized that my normal way of communicating while reading aloud involves a complex mental process, which goes on subconsciously. This involves reading the sentence, deciding what emotion it is supposed to convey, and then deciding how that needs to sound in my voice before I speak. However, after the stimulation session, I was able to understand the emotional content, and speak the sentences with natural emotion in my voice, without having to do any mental processing about it.

I also noticed a difference in the way I saw the woman who was reading sentences. Initially, I focused in on the content of her words, and didn't see the larger picture. As I went through the stimulation sessions, I started noticing more of the larger picture, and noticed what was going on besides the exact content of her words. I also started to be able to pick out sentences which I had taken literally when I first heard them, and was able to understand meanings of the sentences other than a literal interpretation.

The changes in my communication after the stimulation could be described as similar to the difference between looking at things in three dimensions rather than two dimensions, or seeing things in color, rather than black and white. I don't know if this is accurate or not, but it seems to me that this difference in brain function could account for some of the differences in communication between people that have Asperger's and neurotypicals.

It was quite amazing to be able to feel the range of emotional content of communication immediately after the stimulation was done. It was also sad to lose that once the effects wore off. Hopefully, the researchers will find ways to stimulate the brain so that the brain will be able to continue to function with a broader field of view, and communication can increase in meaning and depth.

15 comments:

Strange Behaviour said...

What a remarkably fascinating point of view.

In my quest for information on TMS, it somehow skipped my attention that the effects are briefly lasting. Also, it is still difficult to overcome my hopeful skepticism.

MonarchMom said...

John - I am assuming this approach is not recommended for anyone with seizure activity, even if relatively dormant. I seem to remember that restriction when reading about similar treatment for chronic depression unresponsive to medication.

It's fascinating -- keep the info flowing. I for one have always been interested in new thinking and possibilities. When I got into trying to understand autism and its related issues, I was actually shocked by how little we know about brain functioning, especially compared to other parts of our body. There's all kinds of undiscovered possibilities out there waiting to be brought forth!

Kim Stagliano said...

Magnificent.

Petra said...

John,

Please keep sharing on how you and others perceive the effects of TMS. This is absolutely INCREDIBLE!!

(and from your previous posts about YOUR experience.. if the effects of TMS make YOU happy, well, then that makes ME happy)

John Elder Robison said...

Strange Behavior, the effects of TMS were thought to be temporary if done once, and they last longer the more often the particular stimulation is repeated.

It's true that the peak effect was temporary, but if you read Kim's post at Age of Autism, you'll see that there is a so-far permanent residual effect. And that's quite a powerful change.

That observation seems true for both myself and the writer of this essay. And that's kind of remarkable, because it shows the mind has a strong desire to hold onto this track once it gets it.

Monarchmom . . . the frequency of this particular TMS does not induce seizures, and I would not be so quick to rule the treatment out in your own case.

Whenever we do this, we're in the hospital and have a neurologist on staff, but we've never actually had a seizure incident though we are prepared.

I guess in your case, the answer is, we don't know yet.

kyra said...

amazing! i'm soooooo intrigued about this TMS. it's remarkable and so significant that the other subjects in the study are having the same experiences. wild. i can't wait to hear more.

Polly Kahl said...

What struck me most about that dscription was how lonely and uncomfortable it must feel to know something is not quite right with how you're seeing things compared to how most others see them, but not being able to figure out what is causing it or what you're doing differently. You know that you're missing something but don't know how to correct it, or even how to articulate what it is so others can understand you experience. How incredibly frustrating.

Keep up the great work John.

Foresam said...

John,
Have they tried this with anyone who can't speak yet to produce speech?

Mari said...

Amazing.

Michelle O'Neil said...

Thank you so much for sharing this John. I'm going to forward this and your previous TMS posts to Riley's teachers.

ChrisEldin said...

Thank you for sharing these posts. I am filing this information to share with my sister, whose son is an Aspergian. Truly fascinating stuff.

Holly Kennedy said...

This truly is amazing.
I'd love to hear more from your point of view, John.

Mike said...
This comment has been removed by the author.
Chumplet said...

I certainly hope this breakthrough treatment continues to make big strides. On a much smaller scale it reminds me of when I was a kid with increasingly bad vision. Every time I got a new pair of glasses, I suddenly saw everything with such clarity I rejoiced.

I saw your brother on our CTV station this morning while promoting his new book. He mentioned you!

Kathy Dyer said...

Hi John-

This is amazing-thanks for doing this---I think the autism intervention field is going to take a quantum leap.

Researchers in the 70's identified a tendency in children with autism to respond to a restricted ( an often irrelevant) portion of stimuli, and called it "stimulus overselectivity'--and this resulted in all sorts of problems in learning and socialization-as you may well imagine-

This work you are doing seems to be related to that phenomenon--and offers great hope that help is on the way.

Kathy Dyer