"To take some time out and not think/To sit by the sea and not worry," sings my son Danny, who was diagnosed with autism almost 17 years ago. The lines are from a Hebrew song (and in that language, they rhyme) by the late Arik Einstein, a singer who was Israel's Frank Sinatra, The Beatles and Pete Seeger rolled into one person. Danny, along with many Israelis of all ages, is a big Arik Einstein fan.
As I take a little time out now as World Autism Awareness Day rolls around again and look back at the year in autism, both around the world and in my own home, I'm trying not worry.
While Danny used to rely on unvarying routines to stay calm, now he's making room for some small changes. Once he was hesitant to sing -- I don't know why, and he can't tell me -- but now he sings often. The song about taking time out is particularly evocative for him, I think partly because "Time Out" is a kind of Israeli chocolate bar that he likes. He is comfortable with tangible things, and it seems likely he thinks the song is about having a chocolate bar while sitting by the sea. But on another level, I'm sure he does relate to the idea of relaxing and not worrying.
However, there were times this year, as the news was filled with dozens of stories of low-functioning children and young adults with autism wandering off and dying, often by drowning, when it was impossible not to worry. A just-released study by Autistica, an organization in Britain, revealed that people on the autism spectrum die 18 years younger than others on average.
As the mother of a son who is characterized as medium-functioning, Danny's safety is always a concern. He has many skills, but paying attention to traffic before he crosses the street is not one of them yet, even though his teachers and I have worked with him on this for years.
For parents of medium- and low-functioning children and young adults (I am not crazy about these terms, but I don't have any substitutes), current public discourse about autism, as framed by neurodiversity advocates, can be disheartening. This kind of debate tends to characterize people with autism as just another interest group whose needs have to be taken into consideration. Any talk of treating autism, of trying to improve the communication and social skills of people on the autism spectrum, is often seen by these advocates as discrimination or even hatred. Their argument is that people with autism are simply different from others, and any attempt to help them is tantamount to oppression. Many of them write their thoughts about this issue on their blogs.
For those parents like me, who would burst with happiness if our children were high-functioning enough to read and get incensed by Op-Ed pieces about autism and blog about their feelings, this debate is beyond irrelevant. We love our children and want them to live long, productive lives, like any other parent. We want them to become as independent as they can be, and we want them to learn the skills they need so they are not so vulnerable. We want them to be able to tell people what they need. We want them to understand that they can't rush into oncoming traffic. We want them to be able to swim if they fall into water. And we want them to develop skills that so that they can have some kind of employment. If some people see us as narrow minded and uncaring because we want our children to be able to do they things that these advocates apparently take for granted, so be it.
They say history is written by the winners, but it's also obvious that history is written by those who can speak and write. This year, two major books focused on the history of autism, telling the stories of people who can't theirs.
John Donvan and Caren Zucker's In a Different Key, which was a New York Times bestseller, is a fascinating look into the history of autism and current attitudes toward the condition. It is especially interesting when the authors explore the misconceptions about autism -- among them, Bruno Bettelheim's "refrigerator mother" theory -- that set back efforts to understand and research the autism's neurological roots.
Steve Silberman's Neurotribes: The Legacy of Autism and the Future of Neurodiversity, also a bestseller, is another history of autism, with an emphasis on the development of the neurodiversity movement.
The most memorable quote on autism I read this year was from a New Yorker article on both books by Steven Shapin: "Neurodiversity activists confront parents of severely autistic children in exchanges that are as full of pain as they are rich in irony. Activists insist that there should be no more talk of pathology and no more programs for treatment and cure; the parents are outraged that activists who place themselves on the high-functioning end of the spectrum have no real understanding of the serious disabilities afflicting children at the other end, and are undermining the gains in treatment and recognition achieved over so many years."
Autism has not only been prominent in book publishing, but also on the US presidential campaign trail. Hillary Clinton was the first candidate to come forward with a comprehensive plan for extending autism treatment, research and services. Donald Trump, on the other hand, chose to fan the flames of the anti-vaccination debate rather than offering any actual plan to support people with autism.
In a strange turn of events, Robert De Niro, the actor who is one of the founders of the Tribeca Film Festival and is also the father of a son with autism, included a movie by Andrew Wakefield, the disgraced former doctor whose falsified research was the cornerstone of the anti-vaccination movement, in the documentary section of the festival. After a public outcry, he withdrew the film from the prestigious festival. Perhaps this is the last gasp of this discredited theory, which has been extremely influential around the world. I know that because Wakefield's study was published in the respected medical journal The Lancet, I stopped having my children vaccinated. When The Lancet retracted the article and Wakefield was stripped of his license, I had them vaccinated, with no ill effects. I think that the anti-vaccination theory continues to attract adherents among parents of children with autism because it is the only game in town. There is a great deal of medical research into autism, but no one but Wakefield and his supporters claim to know what causes the condition. It can be hard to accept the randomness of autism, and so the idea that there is a clear cause for it is very seductive.
As Danny sings the next line of the song, "Give your heart a rest from all the pressures. . . the soul wants a little rest," I realize that sometimes that is the best plan. Just to take a break, to let yourself rest. For parents of children with autism, and people with autism themselves, it's easier said than done. But it's a good goal.