April is Autism Awareness Month and April 2 is Autism Awareness Day, but in my home, we are always aware of autism, because my son Danny, who is almost 27, is on the autism spectrum. Lately, when he comes home for the weekend, the first thing he asks to do is to chat with Daniel.
Daniel is Dr. Daniel Orlievsky, professor and director of an international postgraduate diploma program in clinical practice and research in the autism spectrum at the Catholic University of Buenos Aires. They met when Orlievsky was in Israel to give lectures a few years ago. We reconnected during the pandemic when Danny began chatting with Orlievsky via Zoom but through writing.
Orlievsky asks Danny questions about his life and Danny responds by typing his answers on my computer. Having grown up in the special education system in Israel since his early childhood, Danny has never received formal education in English, but has picked up enough on his own and from Sesame Street so that he can type simple sentences, like, “I take the train.”
He tells Orlievsky about subjects that are important to him: outings, how he likes to annoy his brother, his duties in a workshop where he makes wooden toys, what he wants to have for dinner, etc. Unlike so many people on the autism spectrum you read about who suddenly turn into geniuses when they are handed a keyboard, he doesn’t write philosophically about life and the universe.
But unlike the vast majority of those cases, his typing is completely his own. I don’t hold the keyboard. It can take him a while to find the letter he is looking for, but Orlievsky is patient. The words are from Danny, not from a caregiver orchestrating the typing.
Dr. Orlievsky's research
It’s a method that Orlievsky has developed over more than 20 years that he calls the Phaedrus Approach and it is detailed in his writings, most recently in a chapter in the book, Emerging Programs for Autism Spectrum Disorder published by Elsevier in 2021. His research shows that learning to write activates a different part of the brain than that which is used in speaking and that developing this skill can provide people on the spectrum with a different and potentially life-changing way to communicate and express themselves.
He and his staff are willing to put in the time to teach this method, which, in the case of severely impaired people on the spectrum, can mean investing years in teaching them the alphabet and the mechanics of typing. The fact that Danny has taken to this therapy, which to him just seems like a fun way to talk to Orlievsky, is encouraging to me. It should also be encouraging and intriguing to anyone who cares about people on the spectrum, because it shows how much they can accomplish when someone is willing – and able – to take the time to give them a new and meaningful tool for expressing themselves.
While that might sound like an obvious proposition, I am describing it because more and more often, I feel that people want to see autism as a lovable quirk, and not a serious neurological condition that can impair a person’s global functioning, to the point where – like my son – they need 24/7 care for life. People who claim to be on the spectrum often talk in the media about celebrating their autism: It is part of them, it makes them who they are and it’s all good.
WHILE FOR some people, this is true, this concept can play into the hands of policymakers and bureaucrats who want to cut budgets for helping people on the spectrum. Simply put, if autism is a great gift, why allocate money to educate and care for people who have it?
While of course there are some people on the spectrum who can live independently, there are also millions of people like Danny, who need a great deal of support to get through life and many need much more help than he does. While Danny is fluent and literate in two languages, like many people on the spectrum, he is impulsive to the point where he cannot cross a street by himself because he does not pause to look at the traffic.
People on the autism spectrum are 40 times more likely to die in an accident as children and, according to a 2017 study published in the American Journal of Public Health, the average lifespan for a person with autism is 36. Other studies have put that number at 54, still chillingly young.
While he was in the education system and since he left it six years ago, the focus of what he learned was on basic living skills, which is understandable. No program was ever set up or funded enough to work at teaching him the writing skills – in English or Hebrew – that he is learning now. I hope that in the future more people on the spectrum will get the opportunity to do the kind of learning that Danny is doing now.
As Orlievsky wrote, “There are two paradigms that we challenge [with our method], the first one is that it is generally believed that children first acquire spoken language and then they learn to write. When children don’t develop spoken language and seem not to understand it, nobody tries to teach them to write, but we have seen that teaching writing can be incredibly valuable and meaningful.
“The other paradigm is that if children don’t develop spoken language by the age of seven or eight years old, they have a bad prognosis. Through our research, we have learned that there are reasons to think that those paradigms can be wrong for many nonverbal and minimally verbal children with autism.”
I can see that in his mid-twenties, Danny is continuing to develop and that the writing he is doing with Orlievsky is very meaningful for him. He has never been calmer, happier or more social and is learning new skills on every front. While once, he could not tell me what he was doing at the carpentry workshop, now he answers, “I’m painting giraffes and dragons.”
While there is no problem if he misspells something in his work with Orlievsky, Danny has started correcting himself and asks me to tell him how to spell words he doesn’t know. This year, during Autism Awareness Month, I wish people understood how much work there is still to be done with people like him and how much they can learn.
The writer is the movie and television critic for The Jerusalem Post and the author of the novel, If I Could Tell You.