Portia Iversen tells the incredible story of how her son Dov learned to communicate and how many other children benefited from the same treatment.
My husband and I started the Cure Autism Now foundation when our son Dov was between one or two years after he was diagnosed with autism – this was about thirteen years ago. We did it because, although early intervention is so important, we could see that the therapies that existed and even exist today were not going to make as big a difference for him as we wanted.
We started the Cure Autism Now foundation to fund biological research because, believe it or not, thirteen years ago the government was only putting about $5 million a year into the disorder, into research.
So, cut forward, Dov is nine years old and research is really getting going – much better actually – excellent scientists are getting involved, neuroscientists, people from other fields are coming in, from Alzheimer’s, related fields, the government is putting more money in. But every night when my husband and I come home, there’s our son Dov still as autistic as ever – he can’t talk, he can’t tie his shoes, he can’t dress himself, he’s in a pre-academic curriculum.
Around that time I heard of a boy named Tito who lived in India and his mother. I managed to bring them to the United States, through our foundation because I heard that this boy Tito appeared to be extremely low functioning, in other words, if you just ran into him, you would think he was very retarded, he couldn’t speak, there was nothing about his behavior that suggested he had any kind of cognitive ability. But then, in fact, he could handwrite, and he could point at letters and type, and in this way communicate, and actually he had an above average IQ.
So, once I heard about that, of course I didn’t know if this was one in a million, or were there more kids like this? Of course, it crossed my mind, could my son ever do this? But I wasn’t too hopeful only because with a severely autistic child it can take a year to teach them a simple thing like eating with a spoon or something like that.
Anyway, we brought them to the United States and Tito turned out to be a kind of Rosetta Stone or an incredible window into autism. He was able to tell us so many things that we had not understood before. For example, the first thing I ever asked him really, because I wondered about my own son, was, why do you flap your hands (which is what autistic kids do) and rock, what makes you do those things? He said, “I can’t feel my body,” I should say he typed, “I can’t feel my body, I get an anxious feeling and when I move my body like this, it calms me down.” And I thought, wow, we must be wrong about a lot of things.
Anyway, we were, and Tito, very generously, participated in quite a bit of psychophysics and neuroscience type of study, and revealed quite a lot particularly about autistic people who are more severely impacted because we almost never get to hear from them.
So, during this period of time, Tito’s mother Soma began to work with my son Dov, once a week for thirty minutes. And as I said of course, being a mother, I hoped. But thinking logically I knew that there probably wasn’t much chance since Dov was already nine. But she was able to get him to start communicating and then I went on to study what she was doing and watch her working with other children for close to three years, trying to understand what was going on and trying to fit it into a neuroscience model and a developmental model because I felt that it was really asking a lot of people to try to accept or understand that someone with such disordered behavior could be so intelligent.
Once I saw that my son could communicate, I knew that there were probably more people like this. Tito’s mother Soma did go on to volunteer at his school and he was in a small classroom, there were nine kids, and every kid in there did begin to communicate to different degrees, I mean, they had a variety of types of autism, all fairly severe.
For instance, there was one child that had autism and CP [Cerebral Palsy] and he was able to learn the alphabet and start to spell out little three letter words and count, but these were things beyond anything that anyone imagined he could do.
Then there were other children. There was a girl in there, and it was eerie because she just took to it immediately, she already knew how to read and that is not as uncommon as you might think.
So, my idea of how this could be after thinking about it and studying it for a long time, is really that, if you go off track between, let’s say six months and eighteen months of age, of being able to interact with human beings, there’s no reason why your cognitive ability, your cortex, couldn’t continue to develop without any means for you to really let people know how much you’ve learned.
One of the first things I ever asked my son once he began to communicate was, what have you been doing all these years? Because he was nine years old, he was in a pre-academic curriculum, we really didn’t know what he knew. He pointed out the word "listening" and I think that kind of said it all.
So, I do think there are a lot more of these children and I think a lot of research needs to be done and that it needs to be translated into educational method and communication method.