Fourteen-year-old Tito Mukhopadhyay struggles daily with the challenges of severe autism. Though nearly non-verbal, Tito can communicate independently and is a prolific, talented and published writer. For more information and writing samples, visit http://www.canfoundation.org/tito/index.html
Portia, your son Dov is autistic and you and your husband Jon Shestack first brought Tito and Soma to the U.S. What have you learned from them?
Many families and autism professionals have written asking about Tito, his mother Soma, our son Dov, and the new teaching method Soma has pioneered. This method is called the Rapid Prompting Method (RPM). We are working with Soma to produce a teaching manual for parents, teachers and professionals, which describes step-by-step how to implement this teaching method. And we very much agree with the basic assumption that how an autistic person acts on the outside is not necessarily a reflection of who they are and how they think on the inside. We would rather assume competence.
The teaching method which has met with some early success., and through which we now communicate with our son Dov, is not a cure for autism. That will require much more medical research, and we are working hard on that front every day.
How can others learn Soma's techniques?
As parents we understand the sense of urgency that many of you feel in getting this method to your own child. Soma is working hard on getting a first draft of the RPM manual written, and we hope to have a beta test version of it available on the CAN website by June 1, 2003. People will be able to try it out and give feedback before the manual is published.
Can this method be taught to teachers and used in classrooms?
Yes.
Do you think this could work for other autistic children?
It is probable that many could learn to communicate better with this method.
Can Soma work with my child?
Not at this time, but the manual will help you get started.
Are there any workshops available?
Not yet, but there will be in the future.
What kind of letter board does Soma use?
She uses either an ABC or QWERTY (keyboard) configuration, depending on whether the child knows the alphabet or not. The letters are typed or written on a piece of paper or cardboard. Eventually, she trains the child to work on a portable keyboard such as the Alphasmart.
My child can talk -- could this method still help him?
There are many people with autism who are verbal, but tend to use language more as a "stim" than for communication. Soma is testing the method with verbal children whose speech is of limited use for communication. More will be known about this in the next year.
Is there any scientific research on RPM?
The study of this method is part of CAN's larger Neuroplasticity Initiative, which is being led by Dr. Michael Merzenich from the University of California at San Francisco. Dr. Merzenich is an international authority in the field of neuroplasticity and has pioneered important technology to help people with dyslexia, including the computer teaching method Fast ForWord. As we search for effective biological treatments and a cure for autism, CAN is also always looking for ideas that can make an impact for people with autism today. Our goal is to bring the cutting edge of technology to bear upon the communication problems with autism. This initiative is actively creating a new hybrid field, bringing together the wizards of technology and neuroscience along with experts on autism, therapists and people with autism themselves.
What are the recent key developments in finding a cure for autism?
The most exciting news in neuroscience in the last five years is the idea of neuroplasticity -- the concept that the brain continues to grow and change throughout life. There have been amazing breakthroughs in the treatment of stroke and dyslexia through neural retraining. Using specialized education techniques, the brain is able to rewire around damaged or undeveloped areas and re-regulate the way it deals with sensory input. CAN's Neuroplasticity Initiative would compile an integrated team of scientific leaders to focus on bringing these techniques to bear on autism to find ways to retrain the brains of people with autism -- from the very young, to adults and even to those most affected who in many instances are not able to speak at all.
What type of research does CAN fund?
Cure Autism Now funds genetics, environmental co-factors in autism, neuroplasticity and a large portfolio of basic biological research in autism. CAN also works to increase federal funding of autism research and was responsible for the recent funding of eight centers of excellence in autism research by the National Institute of Mental Health.
Where are CAN chapters located?
Cure Autism Now has volunteer chapters in Los Angeles and Orange County, California, Northern California, New Jersey, Baltimore/Washington D.C., Seattle, Philadelphia, and Chicago. Please check the CAN website for information on local activities.
Can Soma and Tito travel and give presentations?
Through the CAN website, we can give Soma your request. It is difficult for Tito to fly, and therefore, he travels infrequently. We are helping Soma create a video of Tito and some the children she has taught, so that she may give presentations herself. She will respond to your request as soon as possible.
You, Tito, and Mike Merzenich, Ph.D., were on "60 Minutes 2" and "Good Morning America" in February, 2003. Any way to see that?
Tapes can be ordered from CBS News. Please visit www.cbsnews.com and click on "60 Minutes 2."
In the Closer To Truth program, "How Does the Autistic Brain Work?" Tito's descriptions are disturbing. Have other autistics described the experience?
Tito's descriptions of sensory stimulation match those of other people with autism. Gail Gillingham Wylie, MSc., an autism consultant and workshop presenter, and her husband Clay Wylie have made the effort to collect these descriptions from a variety of sources and used them to create an "autistic perception" experience for people to try out. I haven't had a chance to do it myself, but I've heard it was very interesting. You can contact them at exgr@telusplanet.net
Quotes from participants of the Super Sensory Sessions:
"The most frustrating thing was not being able to be successful at anything. Visually, auditorily, tactilely. You didn't want to touch. You couldn't hear. The light hurt. I was totally unsuccessful. Everything was a failure. One of my thought processes throughout the session was how important it is to make them, the children with autism, successful and to know where they're coming from."
"I kept telling myself, 'I can master this. I can do it. I know I can do it.' And then you fail. I was surprised at how it made me angry. It was making me angry that I couldn't hear it and succeed. I thought if I listened hard enough I will do it, but it didn't work."
"This experience showed me how autism can break your spirit when it comes to learning. All my energy was used to focus and refocus and re-concentrate in order to try and get the information, but it was impossible. There was no way to succeed, so why not give up."
"The little boy in my class -- his first reaction is to hit, and boy, in that session, did that impulse come out in me too -- I don't know. Because I was just so -- my palms were clammy, and I was about to take it out on anybody. I can understand -- well, not totally -- because you never can, but I'm going to go back to school with a totally different understanding when I look at that little guy, and he gives me one of those sucker punches or something. I can see where he's coming from. It must be horrible."
"This experience allowed me to understand that there is something in the room that my son is reacting to, and that his behavior is telling me about this reaction -- instead of my thinking that his behavior is something inappropriate that I must stop."
"I knew there was an end. There were a couple times when I felt like, 'I'm going to get out of here! I'm going to get out that door.' But I was adult enough that in my head, I knew it was coming to an end. I could hold out longer than you could torture me, as much as it was bothering me. Can you imagine never knowing when it is going to stop?"
"The ying/yang between pleasure and pain was really present for me. The smoke gave me a headache that cut through my brain like a knife, and yet its visual beauty gave me something to focus on that wasn't static in the room. When they chided me for blowing the smoke and told me to stop, I just thought, "No." What are you going to do to me that is worse than what you are already doing to me."
"I completely and consciously disregarded what they wanted of me. This made me realize that my son is not disregarding me because he is disobeying, or because he doesn't like me, or because he is manipulating me to do something else. What he is telling me is that my instruction is not relevant to him."
"Then I started to do the hand things and my anxiety level just shot through the roof. I started getting really anxious, and I couldn't focus on anything. It all started to drive me crazy. I began to fantasize about taking a sledge hammer to the drone in the boom box. As I became more aggressive, I kept telling myself, "No," as I got up to early to take this in to get thrown out. The residual effects of the anxiety and aggression lasted for several hours."
"The anxiety I was feeling made my stomach hurt. In order to ignore it, I began to focus on the radio and then I realized I had started singing along with the songs. I needed something to connect with, in the room, and the radio did it for me. I still feel a lot of stress."
"When you turned off that last tape recorder, a huge weight fell off of my shoulders. It was like there was no more stress. The prickly pen bothered me and the burlap I forgot about, but when you turned off that tape recorder it was like another world. Peace had finally come to this room."
"The worst for me was the absolute discomfort of having you stand over my shoulder, and I could hear you breathing. Knowing you were there. Being as still as possible. Not caring about the movie, or the burlap or anything. Just not wanting to get into trouble. I didn't care if I learned anything. I just didn't want to get into trouble."
"My first instinct was to withdraw inside myself. I know why that would be the number one coping strategy -- to not wanting to be part of it. It's so uncomfortable."
"This experience has humbled me. I have so much respect for people with autism now. I don't think that I would be able to live if I had to deal with this all of the time."
Have you had contact with Tito lately?
My encounter with Tito on the show was the first time I had met him, and it really had an impact on my view of autism. Because although he had a very difficult time communicating with the world and staying fixed and focused, it was clear that through the work that his mother had done with him that he had found a channel of communication that other autistic children do not have. And what made me change my mind is the fact that I saw there may be locked behind this socially impenetrable situation a mind that is every bit the same as ours except that it just can't get through. It can't communicate, has trouble focusing, has trouble holding onto things. I've thought a lot about what it was that Tito's mother did for him, and how that impacted his brain so that he became as communicative as he is.
Have you spoken with any colleagues about Tito?
Recently, I had a conversation with Mike Merzenich from UCSF. And Mike has some very interesting ideas having to do with coherent activity in different parts of the brain and how plasticity -- how changes in the organization of the brain -- may, first of all, be the underlying cause of conditions like autism. He's also working on a way for these kids to interact with a computer to react to timing signals. He thinks it might be possible for them to create or improve their communications channel, starting first with the computer and then broadening that out to people.
How do we represent information in the brain?
Information can be represented in the brain in many different ways. For example, if a neuron fires several spikes, the information could be represented by the number of spikes, but it also could be represented by the time at which the spikes actually occur. And there's evidence in fact that the timing might be important for things like attention and it may be the ability to pay attention and to focus on a single sensory stimulus that is really at the heart of autism. And if we understood more about the temporal coding part of the brain we might be able to perhaps come up with a cure for autism.
In your opinion, is temporal coding the main way the brain works?
It's very unlikely that temporal encoding is the main way that the brain works because of the fact that we know that it is sometimes present and sometimes isn't. It varies with your mood. It depends on what you're focusing on. So if it's important, it's going to be important for the higher level of processing rather than basics like recognizing an object or being able to throw a baseball. Those things are probably based on rate coding. But things that have to do with your ability to think, for example, and be able to focus your attention, might be related to the time that the spike occurs -- not just how many spikes that occur.
Describe further "the binding problem."
There's a controversy having to do with how information that belongs together stays together. For example, if you have a red cup, how does the redness of the cup and the shape of the cup, how is that bound together? That's called the binding problem. And there have been different solutions that have been suggested for it. In my view, I don't think it's a real problem. I think that the brain is quite capable of representing those properties by different groups of neurons firing at roughly the same time, but they may not necessarily have to fire their spikes at exactly the same time. And then it actually makes a lot of sense from the perspective of freeing up the actual timing, to use that for something else -- not for binding the information together, but rather for enhancing or amplifying the information.
What kind of brain imaging techniques are available?
Brain imaging in humans and functional magnetic resonance imaging in particular has really opened up a whole new era in the study of humans. For the first time, it's possible to study -- non-invasively -- activity occurring in different parts of the brain during things like language that cannot be studied in any other animal because we are the only animal that has the ability to communicate with language.
What are the key developments in the field right now?
The field that I'm working in right now, which is bringing theoretical ideas and computational models to the brain, is a field that is really one of the newest areas of neuroscience.
As someone who studies the brain in detail, what do you think, does the soul exist?
I think differently from a lot of my scientific colleagues in that I save a place for the soul along with all things spiritual. So for me, not everything has to be explained for me personally by a molecule or an atom, and so I put the soul in the category of those mystical things that touch us in life that, you know, I don't think we have a molecular explanation for.
What causes autism?
There's a wide range of speculations regarding what causes autism. But when identical twins are born, one of whom turns out to be autistic, there's a 90 percent chance that the other member of the identical pair will be autistic. When fraternal twins are born -- and so they're not genetically identical -- and one of them is autistic, then there is a zero percent to 15 percent chance the second one will be autistic.
That difference suggests a very strong influence of genetics. Now, it also may well be that the genes that are involved in autism somehow place that individual at greater risk or more vulnerable to environmental events, like exposure to viruses or toxins. That's a possibility. Autism may be caused by a reaction to a virus or toxin.
What developments would help us understand the causes of autism?
Autism is a disorder in which children live a long, natural life. They don't die, so you can't look at the brain after they die. So how do you study it? More effective methods for neuroimaging are required, methods that allow imaging down to describing details of cortical areas and structure. That would be a key way to study the features in their brains when they are most flagrant - at the time the child is two or three.
Whom do you most admire and why?
Actually, right now the person I most admire is Terry Sejnowski. The reason is that he has a very positive, very proactive and energetic approach to science, and his interests are wide-ranging, and he understands the excitement of a lot of different areas of neuroscience. And it's with that emotional and psychological attitude, as well as that intellectual attitude, that allows him to integrate across many domains; and that's what's needed when you study a developmental disorder because developmental disorders are very complex.
