This is an essay I wrote recently:
In search of a term to find those who have given up searching
Imagine you are given a list of words, words that are unfamiliar to you, words that today we might call search terms ‚Äď and you are asked to guess which words will become very familiar to you over the next decade. Could you guess?
Eventually our lives become filled with familiar terms ‚Äď terms that describe not only what we know but also reveal what we are searching for. In his book ‚ÄėSearch‚Äô, author John Battelle calls these words or search terms our ‚Äúdatabase of intentions‚ÄĚ. Much of the work that goes on in the world of internet commerce busies itself with the daunting task of trying to determine these words - the search terms that define us.
Autism, PDD, Applied Behavioral Analysis, Picture Exchange System, floor time therapy, gluten free diet, thimerosal. Thirteen years ago I had never heard of any of these terms except one: autism - and I didn‚Äôt really understand that one very well. Little did I know how very well I would come to understand all of these terms and hundreds more like them in the years that followed my son Dov‚Äôs diagnosis of autism.
By the time Dov was three, we had already run through most of the intensive early interventions with little results and his therapists were telling us that if he wasn‚Äôt speaking yet, he probably never would. It was about this time that my husband Jon Shestack and I started the Cure Autism Now foundation to fund autism research. It was at one of these scientific meetings sponsored by our foundation that a researcher told me about a boy named Tito who lived in India. He was severely autistic, yet this boy could read, write and communicate - and he even wrote poetry, the researcher said.
Anyone who knows anything about autism will tell you that lack of communication is supposed to be at the core of the disorder and so the existence of someone who was severely autistic yet had excellent language skills seemed impossible. So much so, that when I first heard of Tito, I suspected he must not really be autistic, or if he was, that he must be one in a million. But that didn‚Äôt stop me from doing everything in my power to find him. The possibility that a person like Tito could exist was the first glimmer of hope, no matter how impossible, that I had ever been given since Dov was diagnosed with autism at the age of two. After several months of searching, I finally found Tito and his mother in a most unlikely place ‚Äď an internet caf√© in Bangalore where they had established a Yahoo account.
It was the summer of 2001, when Tito and his mother Soma first came to the United States, sponsored by the Cure Autism Now foundation. Over the next two years we visited neuroscientists around the country as Tito provided researchers with an amazing window into autism such as they had never seen before: here was a nonverbal person with severely autistic behavior who could actually describe his own perception and experience.
Tito‚Äôs mother was eager to try the communication method she had developed for her son with other autistic children and soon she began to work with my son Dov. In a matter of weeks Dov began to type out words and sentences and we experienced the shock of a lifetime when we discovered that he had been understanding us all along. This was a turning point in all our lives, a kind of modern day miracle, wonderful and frightening all at once. How many more children were there like Tito and Dov, I wondered? There was one way I could think of to begin to find out. In the fall of 2001 Soma began volunteering at Dov‚Äôs school, working with the nine autistic students in his class.
Anyone who knows anything about autism will tell you that mental retardation is a hallmark of the disorder, affecting 80% of those with autism. But only a few months after Soma began to work with the students at Dov‚Äôs school, all of them had started to communicate to varying degrees, some more and some less, but every child had far more cognitive ability than anyone had ever suspected.
It seemed that the method Soma had developed for her son might be very important, even the basis for a universal approach to developing communication abilities in nonverbal autistic children. The method itself consists of verbal and visual prompts that help jumpstart the process of joint (shared) attention to stimuli in the environment, in real time. Joint attention is something that typically develops in the first year of life but fails to develop in young children with autism. It turns out that joint attention to the alphabet and phonics can be used to teach literacy which in turn can be used as a bridge to communication. Unlike most methods used to teach autistic children, Soma‚Äôs method did not require eye contact or social behavior as a prerequisite for learning, but instead concentrated on establishing synchronous joint attention regardless of behavior.
I began to realize that this communication method could be as big a deal as sign language or Braille. But how could I get word of it out to the world? I decided to write a book.
‚ÄėStrange Son‚Äô was published in 2007 by Riverhead Books. It‚Äôs the story of my journey to meeting my son and getting to know him, but more than that, it is a cry for recognition of the countless number of nonverbal autistic children who could remain locked into lives of isolation unless they are given a way to begin to communicate.
Today my son Dov is 14, he has long hair, prefers wearing a jean jacket and like girls. But he also still has autism which means he cannot speak and needs help with almost everything. The amazing thing about Dov is that he didn‚Äôt begin to communicate until he was nine years old, and it was only then that we discovered a boy we had not known before. A smart, caring, wonderful boy who, when we asked him what he had been doing all those years, simply spelled out: ‚Äúlistening‚ÄĚ.
In those years before Dov could communicate, the top search terms in my own personal database of intentions were: ‚Äútreatment‚ÄĚ and ‚Äúcure‚ÄĚ. Instead I got ‚Äúcommunication‚ÄĚ and for that I am very, very grateful. Of course I still want treatment and a cure for Dov, but the ability to communicate with him is a precious and unexpected joy.
After my book was released I was contacted by many parents and educators wanting to know how to start a nonverbal child on the road to communicating. By this time I knew a handful of people who could successfully teach children using the communication method that had worked for Dov. One of these was the researcher Marion Blank, at Columbia University in New York. Dr. Blank had developed a method of teaching literacy and communication to autistic children that reflected many of the same underlying principles I had observed in Soma‚Äôs approach. Blank shared with me that many of the nonverbal autistic children she‚Äôs worked with, were already able to read by the age of six or seven, simply as a result of exposure to spoken and written language.
How could I connect people who knew how use this method with those who wanted to learn about it? What about an online social network - a community akin to Myspace, for anyone who wanted to learn more about this new communication method? I launched just such a community (www.strangeson.com) shortly after ‚ÄėStrange Son‚Äô hit the bookstores.
But I soon encountered an unforeseen problem. The very families I wanted the most to connect with were nowhere to be found on the internet ‚Äď they had run out of search terms to try. If they had a nonverbal child with autism, who was over seven or eight years old, they had probably tried every therapy available and watched as these therapies helped other kids but not theirs. These families became increasingly isolated over time, more afraid, more sad and even ashamed as the unthinkable option of ‚Äúplacement‚ÄĚ in a residential facility became ever more inevitable. These are the very families I needed to find. But these families had given up searching. There were no longer any words they could type into the computer that spelled hope; the hope of finding treatment or a cure, the hope of finding help and support, the hope of finding a decent school, the hope of finding some way to improve the life of their child. In fact, the term hope itself had departed from the vocabulary of their hearts.
‚ÄėStrange Son‚Äô was reviewed in the New York Times recently and in the week that followed a lot of people bought the book. I hoped they might be getting it for someone they know who has a nonverbal child with autism. Search terms, I reminded myself, have been around for a long time, even before computers were ever invented. Perhaps the only search terms you really needed to reach out and find these families who have fallen off the radar, were the old fashioned human kind, sometimes known as ‚Äėfriendship‚Äô, sometimes even known as ‚Äėlove‚Äô. I dearly hoped this was true and that these terms were alive and well in the database of intentions of the friends and families of parents who are struggling to raise a nonverbal child with autism.