Most autistics vehemently reject organizations that sponsor research for a cure. Worse, the “Cure Autism Now” organization raised millions in the first few years of inception, desperate to eradicate autism. Motivated by their son’s decreasing independence, Hollywood producer Jon Shestak and his wife, Portia Iversen, pushed to reverse his regression, which they found to be very alarming.
When they heard about Tito in India, who mastered independent typing, they sponsored Soma and Tito to move to the United States.
Soma soon worked with more than 70 families in a short span of time, bringing RPM to a local school in Los Angeles, and eventually starting the Halo clinic in Austin, Texas.
Because of this dramatic history of how RPM came to America, one must be cautious about rejecting people with a harsh attitude around autism. Sometimes people can change, and see their children for the amazing people they truly are, regardless of how they communicate.
This story first aired on CBS 60 minutes in 2003, “Breaking The Silence (AKA Autism)” (watch full video at the end of this page). The episode opens with a grim look at autistic people. They are judged, name-called, and mistreated on the basis of their actions. When Tito enters the story, the attitude changes. In the last segment, the interviewer is seen speaking to him in age appropriate manner, and with a respectful attitude. Mother Portia is seen learning and spelling alongside her child.
Prior to RPM, the attitude regarding the nonspeaking child was “alarming” and “frightening” and something of a “horror story”. RPM has the capacity to push this attitude shift in society. It begins with the individual, who now has a way to prove to their parents that they have significant knowledge of a subject matter. As the parent feels confident in their child, they begin to advocate to the school, and eventually the world. We don’t need to lock people into low-education settings just because we insist that they prove their knowledge in one specific way. RPM is knowledge, and knowledge is power.
Dr. Michael Merzenich has been studying Tito for more than a year. A neuroscientist the University of California, San Francisco, he says Tito is not only authentic, but miraculous.: “There can be little question, in the writing behavior of Tito, that he’s providing the answers and that the answers are coming from his brain.” Specifically, Merzenich reckons there may be “hundreds, if not thousands of Titos out there”. Despite the controversy that RPM users couldn’t possibly be the author of their own words, the method will live because everyone deserves a chance to be included.
RPM RESOURCES: WHERE TO START
RPM is a method for teaching academics to non-verbal students, which may lead to independent typing. Many of my piano students use RPM. Contrary to popular misconceptions, RPM (or sign language) does not lead a nonverbal child to delay using speech. In fact, it promotes more fluid communication using an unexpected neural resource that is innate. See the 60 minutes documentary below (captions and transcript at the end of the page).
Here is a list of RPM resources and the information I recommend you to watch:
- Watch the movie from my https://hennyk.com/resources/ page: A Mother’s Courage: Talking Back to Autism – Documentary that highlights the Rapid Prompting Method, helping non-verbal individuals learn how to point to letters on a board. This is the beginning of communication, which leads to typing.
- RPM in the news: “RPM does not have clinical studies to prove it works. It does have hundreds of families who say it changed their lives…RPM demands that we dig deep, so children like Graciela and John Paul can be set free”.
- Ido Kedar on NBC Los Angeles, “Autistic Teen Uses Tech to Break Silence: “I Escaped My Prison”
- Tito (Soma’s son) and RPM, 9 minutes https://youtu.be/Nfiap3a7Tuo
- Videos on Soma’s page http://www.halo-soma.org
- Unlocking Faces RPM FaceBook Group for parents and practitioners, Sue’s group: This is where you can find some lesson plans. Also inquire about the secret “RPM Homeschoolers” group.
- RPM Basics – preparing a lesson from a book
- RPM Basics – Getting Started, # 1 (Choices)
- RPM Basics – Getting Started, # 2 (Spelling Stencils)
My first time introducing RPM to Lucien (8) . According to his mother, the school was teaching him the sounds of the alphabet, because he “can’t read”. Once I pulled out the stencils to increase the challenge, he spelled the word “child” without prompted on the spelling of the word. Within 20 minutes, he cycled through multiple levels of RPM, and proving his literacy, vocabulary, and critical thinking. (See description on video page for detailed breakdown).
Super-Smart kids show you when they are bored – Bella is deliberately choosing the wrong answers. From my experience, the super clever kids do that to show you how super bored they are with (1) the material, and (2) method level. It’s always time to increase in both different levels of difficulty (subject and task). Once mom started to teach more stimulating topics and improving her own technique, Bella made very rapid progress – she is now able to independently express her thoughts using a keyboard (later in the video– approx 4mins30secs).
RPM Global Support Network (Skype / FaceTime) – My FaceBook group for beginners to post videos of sessions and get feedback from others around the world:
Transcript of 60 Minutes Video:
VICKI MABREY: Over the past few years, statistics have shown a significant and startling rise in the number ofchildren diagnosed with autism. But there’s also been what some are calling an unexpected breakthrough in the disorder. It’s happened quietly, with just a handful of children, but it could have profound implications for nearly half a million children in the US alone. They are kids with autism, children many presumed are mentally retarded or locked in their own world, unable to communicate or even to think for themselves. That was the prevailing view of autism, until now. Tonight, we’ll introduce you again to the remarkable people who are breaking the silence of autism, a silence that led one couple on a desperate search for a cure.
00:45 MR. JON SHESTAK It’s like sometime between your baby’s first and second birthday, somebody sneaks into your house late at night and they steal his mind and his personality, and they leave his body behind.
01:00 MABREY For Hollywood producer Jon Shestak and his wife, Portia Iversen, it was like something from a horror film.
01:10 MABREY Like most children with autism, their son, Dov, appeared to be developing normally, a happy baby, learning to speak.
01:20 MABREY Then, at around 18 months, he lost the few words he had, stopped answering to his name and disappeared into the frightening world of autism.
01:30 MS. PORTIA IVERSEN I felt so helpless to help him, and yet, every minute, every day, I saw him getting further and further out of my grasp, and there was no expert out there to stop it.
01:40 MABREY Although there are varying degrees of autism, Jon and Portia were told their son had the most severe form. They were told he would never speak and probably was mentally retarded. Doctors said there was nothing Portia and Jon could do for him, except give him constant care and get on with their lives. Now, age 10, the only sounds Dov makes are unintelligible.
02:05 MABREY His behavior is filled with uncontrollable movements called stimming, or self-stimulation.
02:10 MS. IVERSEN Listen, people don’t want to do stuff with you out here if all you want to do is stim, OK?
02:15 MABREY How frustrated were you?
02:20 MS. IVERSEN The worst times, you know, were when he was–was in pain of some kind and we couldn’t figure out, you know, ‘Was it a toothache? Was it a stomachache? Did he have appendicitis? Did he break a bone?’ And he couldn’t tell us.
02:30 MR. SHESTAK That’s a–tha–that’s pretty helpless, and everything in you is saying like, ‘You gotta help him, fix him, make him feel better,’ and you don’t even know where to start.
02:40 MABREY If we wait for the feds to sort of actually make a…
MABREY Portia and Jon were told there was no cure and that there were very few scientists even doing autism research, so they formed a research foundation called CAN, Cure Autism Now.
02:55 That’s al–that’s a huge amount of work.
MABREY In just seven years, they’ve raised close to $20 million, making CAN the largest private supporter of autism research in the country.
03:05 MABREY But their biggest breakthrough didn’t come in the lab. It came from a boy their foundation brought over from India, a boy who seemed very much like their own son, but with some dramatic differences. This child is challenging every assumption about autism, turning the world of Portia and Jon and thousands of other parents like them upside down.
03:25 MABREY His name is Tito Mukhopadhyay, seen here when he was 10. Like Dov, he’s severely autistic. He, too, is almost mute and has little control over his body. Now 14, Tito still exhibits all the same symptoms of autism, but he’s doing what doctors, researchers and most parents of autistic children once thought impossible. He has learned to writeeloquently and independently about what it’s like to be trapped in an autistic body.
04:00 MS. IVERSEN I was able to ask Tito things I always wanted to ask my own son, Dov: ‘Why do you flap? Why do you rock? Why can’t you look in my eyes?’ You know? And Tito could answer all these questions.
04:10 MABREY Through his writing, he told her he flaps his arms because otherwise he can’t feel his body. He avoids eye contact because it’s difficult for him to see and hear at the same time.
04:20 MABREY What do you think the biggest misperception is that people have of people with autism?
04:30 MABREY What we are seeing in Tito is unprecedented. Bydefinition, people with severe autism have trouble with language, a notion that Tito shatters every time he puts pen to paper.
04:40 That they don’t have any understanding.’
04:45 TITO MUKHOPADHYAY Of…
MABREY Any understanding of what? ‘Of anything.’
04:55 MABREY When you first met Tito, were you skeptical?
DR. MICHAEL MERZENICH The nature of a scientist is to be skeptical, so I was surprised when I–certainly surprised, when I met him, to see the very compelling evidence that he was for real.
05:10M ABREY Dr. Michael Merzenich has been studying Tito for more than a year. A neuroscientist at the University of California, San Francisco, he says Tito is not only authentic,but miraculous.
05:20 DR. MERZENICH There can be little question, in the writing behavior of Tito, that he’s providing the answers and that the answers are coming from his brain.
05:25 MABREY If Tito seems a miracle of autism, this is the miracle worker–his mother, Soma, who gave up a career in chemistry to devote her life to teaching her son, even though doctors in India said he would never be able to learn.
05:40 MS. SOMA MUKHOPADHYAY At first, they told us he was mentally retarded because he looked that because he wasn’t doing anything. He wasn’t doing what a kid’s age level–a–a three-year-old child should do. He did not respond. He did not do anything.
05:55 MABREY Were you told how to teach him?
MS. MUKHOPADHYAY No, no, no.
MABREY What were you told?
06:00 MS. MUKHOPADHYAY To keep him busy.
Here, come. Run, run, run, run, run.
MABREY And she’s been keeping him busy ever since.
06:05 MS. MUKHOPADHYAY Find Pershing Square over here. Here. If you don’t look–where is it? Come on.
MABREY As a young child, she noticed he was staring at calendars, so she started teaching him numbers and letters.
06:15 MS. MUKHOPADHYAY What are the factors of six?
MS. MUKHOPADHYAY Say that properly.
06:20MABREY When he wouldn’t hold a pencil, she used a rubber band to tie one to his finger and taught him to draw lines and eventually to write.
06:25 MS. MUKHOPADHYAY Now why is it coming down the line?
06:30 MABREY If her method looks simple, just ask parents of other severely autistic children.
MS. MUKHOPADHYAY Sit.
MABREY They’ll tell you that, at one time or another, they too tried to get their child to type or communicate, with no success. But Soma’s method requires tenacity.
06:40 MS. MUKHOPADHYAY Write the F properly. Write it again. Write it again. No one will be able to read that.
06:50 MABREY For the past 11 years, this tireless taskmaster has spent every waking moment talking and teaching.
06:55MS. MUKHOPADHYAY Hey, now look at this. Oh, look at that.
MABREY …constantly prodding…
07:00 MS. MUKHOPADHYAY You’re not even looking.
MABREY …to keep Tito stimulated…
MS. MUKHOPADHYAY We get to put our names over here. How would that look?
07:05 MABREY …and his mind on track.
MS. MUKHOPADHYAY Look at that. No, not like that.
MABREY What if you slacked off? What would happen, do you think?
07:10 MS. MUKHOPADHYAY No, I did not, so I–I don’t know.
07:15 MABREY So you don’t even know.
MS. MUKHOPADHYAY I–I can’t even imagine myself doing that, yeah.
07:20 MABREY Her determination and her assumptions about Tito may have made all the difference.
07:25 MS. MUKHOPADHYAY There’s something? Where?
MABREY She never doubted that he could learn…
MS. MUKHOPADHYAY One, two, three. No.
07:30 MABREY …so she fed him a healthy diet of knowledge, from Shakespeare to geometry to music.
07:35 MABREY Tito, without your mother pushing you, how would your life have been different?
07:45 MS. MUKHOPADHYAY ‘I…
MS. MUKHOPADHYAY ‘…would…’
07:50 MS. MUKHOPADHYAY ‘…have been a…’
MS. MUKHOPADHYAY ‘I would have been a vegetable.’
08:05 MABREY ‘I w’–(gasps). ‘I would have been a vegetable.’ So it’s a good thing that she pushed.
08:10 MUKHOPADHYAY Yes.
08:15 MABREY He said he’d be a vegetable.
DR. MERZENICH I think that’s probably pretty–prettyaccurate.
08:20 MABREY Though Tito seems to have escaped that fate through his writing, he remains severely autistic. He can’t even pick up the pad and pencil to write without his mother’sconstant prodding and urging.
08:30 MS. MUKHOPADHYAY Write.
Write. Write it!
MABREY But when Tito does write, it is with astonishing insight, especially for a boy just 14 years old. He’s written hundreds of poems, including this one, which we watchedhim write from beginning to end.
08:45 MS. MUKHOPADHYAY ‘I have fancied a little dream, and the world is left unseen. With the light of your eyes, through the darkness of the night, I have held that little dream, beyond my world, beyond all scenes.’
09:00 DR. MERZENICH Tito is a beautiful example of the possible.
DR. MERZENICH Here, we have a boy that, largely through the empirical interaction of this boy with his–with his mother,a–a way has been found into his–into his ability, into his spirit.
09:15 MABREY Do you think that Tito is just one in a million?
DR. MERZENICH I think there could be thousands of–maybe tens of thousands of Titos out there.
09:20 MABREY Scientists will soon find out if that’s true. For the past year, Soma’s been testing her homegrown methods on a small group of children at the Carousel school in Los Angeles, the school attended by Jon and Portia’s son, Dov.
09:35 MS. MUKHOPADHYAY Here, Dov.
MABREY Like Tito, these nine- and 10-year-olds are severely autistic. Few can speak, and until recently, teachershad no idea if anything was actually getting through.
09:45 Who were the Native Americans there at the time?
09:50 MABREY Now they know.
MABREY In the space of a year, kids who were being taught on a kindergarten level are now being taught math, social studies and science like fourth-graders.
10:05 MABREY Karen Spratt was their teacher. She had been trained in applied behavioral analysis, a treatment which has been very effective in teaching children with autism. Spratt says she was skeptical since Soma’s technique seemed todefy most of the principles of ABA.
10:20 MS. SPRATT Soma did everything that I was told not to do, kind of, as a teacher. So, for instance, she talked constantly.
10:25 MS. MUKHOPADHYAY The sun rises in the east or not? Pick up.
10:30MABREY And that’s the exact opposite of everything that you had been taught?
MS. SPRATT It is. In my training, it was that you give basic directions and wait for a response and not to do–to verbalize too much because it could be distracting.
10:45 MS. MUKHOPADHYAY If 26 plus two is 38–28…
MABREY Instead of being distracting, Soma’s ‘Rapid Prompting Method,’ as she calls it, seems to keep the children’s attention focused long enough for them to communicate.
10:55MS. MUKHOPADHYAY Pick up. 98, good.
MABREY She ignores their erratic movements and wandering eyes and focuses instead on the mind locked inside.
11:00 MS. MUKHOPADHYAY Straight lines or the line of longitude?
11:05 MS. MUKHOPADHYAY No, it is the line of longitude. Now tell me…
MABREY Did you ever second-guess your approach? Ever think, ‘Maybe this isn’t right?’
11:15 MS. MUKHOPADHYAY No, no. I’m always sure of myself, what I’m doing.
11:20 MS. MUKHOPADHYAY Because it works. It works.
MABREY And she offers some astonishing proof.
11:25 MS. MUKHOPADHYAY Tell me, what do you like best?
MABREY Dov Shestak was one of her first students, since itwas his parents, Portia and Jon, whose foundation brought Soma to the United States, but they never expected this.
11:35 MS. MUKHOPADHYAY Math, yes? You like math. Here, we can do some math over here to show off.
11:40 MABREY After years of trying nearly every technique available for autistic children, his parents were astonished. Within six weeks of working with Soma, suddenly came full sentences, complex thoughts and words spelled correctly.
11:55MS. IVERSEN …R. It is a flower, and that’s a bulb.
MS. IVERSEN The best way I can put this is it seemed like I was seeing the kid that had disappeared seven years before.
12:00 MS. IVERSEN And suddenly, you know, it wasn’t just the one word or gesture I was able to get. It was whole–wholesentences and ideas.
12:10 MS. IVERSEN Keep going. I know what you mean, but finish it up.
MS. IVERSEN I was like a kid in a candy shop. I didn’t knowwhere to start, you know? ‘What’s your favorite color? What do you want to be when you grow up?’ I mean, you know, all the questions you ask a child over years.
12:20 MS. IVERSEN You know, every day there was whole new sets of things I was finding out.
12:25 MS. MUKHOPADHYAY Here, Dov, tell me, why do you like math so much?
MABREY They learned that Dov is interested in religion and history and is a surprisingly good mathematician.
12:35 MS. MUKHOPADHYAY …Y. ‘It’s easy.’
MABREY We asked Dov how he had learned so much when no one had formally taught him.
12:40 MS. MUKHOPADHYAY L-I–come on. Go ahead. Come on.
12:45 MABREY He told us that all those years when people thought he was lost in his own world, he was actually listening to everything around him.
12:50 MABREY You learned to spell, and you learned to do math.
12:55 MABREY Although Soma’s method has not been studied scientifically, Mike Merzenich is one of many researchers who think it should be taken seriously.
13:05 DR. MERZENICH I think it’s almost certain that this method can be used with many, many autistic children.
DR. MERZENICH And the initial indication, from these studies in Los Angeles, is that it might apply even to the substantial majority of these children.
13:15 MABREY That they might be helped by this method, by…
13:20DR. MERZENICH Absolutely.
MABREY …someone prodding them and telling them, ‘Think. Do, do. Act.’
DR. MERZENICH Exactly.
13:25 MABREY Scientists can’t help but wonder what other secrets Tito, Dov and others like them still hold.
13:30 MABREY Are you happier now?
MS. MUKHOPADHYAY Y-E…
MABREY But one thing is certain. The ability to communicate has had a profound effect on Dov’s life.
13:35 MABREY ‘Yes.’
13:40 MABREY He’s happier now, and you don’t have to be a scientist to understand why.
MS. MUKHOPADHYAY …S.
13:45 MABREY ‘I can tell others my feelings,’ and that’s why you’re happy.
13:50 MABREY After our report aired in January, Cure Autism Now received thousands of letters from families asking Soma to work with their children. Since then, she’s worked individually with some 70 kids with autism, and the results, parents tell us, have been remarkable. Soma and Portia are now finishing a manual that will teach others how to use the Rapid Prompting Method.