There are always questions we don’t like being asked: How much do you weigh? What do you earn? The one I least like hearing is: Why didn’t you do a prenatal test? People in Israel ask me that all the time, and the reason they want to know is that my son Danny, who turns 18 next week, is autistic. April 2 is World Autism Awareness Day, and all April is Autism Awareness Month, so these questions are very much on my mind right now – although I often joke that in my family, it’s always Autism Awareness Day.
When I tell the questioners that there is no prenatal test for autism, they often ask me a similarly intrusive and unwelcome follow-up: “Why did you have a second child, if you knew Danny was autistic?” The answer to that question is quite simple as well: My second son was born six weeks before Danny was diagnosed with autism, a disorder that severely impairs people’s ability to communicate and makes social functioning difﬁcult. I am grateful for that timing, because the truth is that I might have not had a second child if I had known about Danny’s autism – as siblings of children with autism have a 20-percent chance of having the disorder as well.
Besides highlighting the tactlessness that often characterizes Israeli society, these questions show a great deal about the attitude toward people with disabilities in general and autism in particular here. I have learned an enormous amount from being the mother of a boy with autism in Israel over the past 14 years – Danny was diagnosed with autism at age three in New York, and we moved back to Israel a year later in 2000 – but I started out just as clueless as the people who ask me these questions.
The queries indicate that the questioner thinks we would all be better off if my son – whom I love with all my heart and soul – and people like him, did not exist.
DANNY IS designated as a medium-functioning autistic, and it’s difﬁcult to describe him. As Dr. Stephen Shore, a musician and writer diagnosed with autism as a child, said, “If you’ve met one person with autism, you’ve met one person with autism.”
Danny isn’t an extraordinarily verbal savant, like the character in the movie Rain Man, and he isn’t a low-functioning person who can’t speak. Danny has his own difficulties and his own strengths. It’s hard for him to focus and learn. He is severely hyperactive, a quality that is often, but not always, a component of autism. And he still has tantrums when he is frustrated.
But Danny’s energy also helps fuel his many skills and interests: he swims, and won a gold medal at the Israel Special Olympics last year; he is bilingual; he studies piano; and he knows the name of every car on the road. But most of all, he is an extraordinarily affectionate person and often the ﬁrst one to notice and give me a hug when I am sad.
He doesn’t seem to have gotten the memo about how people with autism supposedly aren’t interested in others (they may not understand why people do what they do, and may misinterpret social cues, but that is extremely different from a lack of interest). One of my big problems with him in public is that he is too friendly to strangers, smiling warmly at shoppers in the Rami Levy supermarket and asking them questions about their lives. He likes to tell bald men, “You just got a haircut!” which gets a laugh – or a scowl. We encouraged him to talk and reach out to people, and now we’ve got to ﬁne-tune his friendliness.
It’s very difﬁcult and sometimes impossible for people with autism to lie, because it is hard for them to understand what is going on in other people’s heads and to manipulate them – try ﬁnding a politician with that quality. The ﬁrst time he lied, he was about 10 and told me had brushed his teeth when he hadn’t. I was ecstatic, and called his therapist to share the good news.
MY LIFE would be a quieter and easier if not for Danny, and my bank account balance would be much higher – although one of the silver linings in having Danny was that he inspired me to write a novel about families in the US raising children with autism, If I Could Tell You. Since it was published in 2012, I’ve received letters and emails from parents of children with autism all over the world, including the US, Norway, Argentina and Japan, and it seems we all struggle with the same issues.
But would Israel be a better country if there were no people with autism here? There’s an obvious consensus here that it would be, but I beg to differ. It’s a pressing issue for me and for all the families in which someone has autism, and not just this month.
Israel tends to lag behind the US in many trends, but not in the diagnosis of autism. The US Centers for Disease Control and Prevention released a shocking statistic in 2012: One in 88 children born in the US will be diagnosed with autism, and the ﬁgures are similar here. According to Alut – The Israeli Society for Autistic Children, one in 100 children get the diagnosis here, and the number of diagnoses of the condition jumped ﬁvefold between 2004 and 2011.
When Danny was born, in 1996, the ﬁgure was one in 2,500 in the US. No one knows exactly why there has been this explosion in the diagnosis around the world, but when your kid is the one in however many, you don’t have much free time to ponder it. The important message – for now, anyway – is that there are thousands of Israelis with autism, and there are only going to be more.
And awareness is growing. Yellow Peppers, the television series from the Keshet network, which tells the story of a family on a moshav whose son is diagnosed with autism, is enormously popular. Finance Minister Yair Lapid and his wife, Lihi, have spoken and written about raising their autistic daughter. And people in general are more likely to have some understanding of what the word “autism” means than they did a decade ago.
But awareness is just the beginning. In a recent conversation I had with Tami Bendavid Yona, chair of the Jerusalem branch of Alut, she mentioned some recent Facebook posts by mothers of children with autism (we’re mostly single mothers). “No one comes out and says it, but if you read between the lines, you see that they’re lonely,” she said. “People talk about awareness and accepting people with autism, but they don’t invite families with an autistic child over.”
Raﬁ, my younger son, observing the way people here react to Danny, has said many times, “People in Israel are either the nicest in the world or the meanest.” The synagogues in every place we’ve lived have embraced Danny as a member of the congregation. Once, when Danny was making noise during the morning service, one man got angry and an elderly man said, “Who does God want to hear? Us? No, God wants to hear him.” Religious people sometimes attribute all kinds of spiritual powers to Danny, telling me he is especially close to God. I am not observant, but I’m always happy to hear something positive.
Since people with autism have no identifying facial features – the way people with Down syndrome and certain neurological conditions do – it isn’t immediately obvious that they are different, until they do something that bothers people. And people are awfully bothered by my son, who often is often noisy in public (I know – we’re working on it), or jumps up and down when he gets excited about something.
He learned the words “stinking retard” very early in life, and those are words he hears too often, to my great sorrow. I try not to be bothered by people who make those comments, but obviously it’s not easy. Raﬁ, who can be ﬁercely protective of Danny, often shouts, “He’s not retarded!” I usually say that people who call Danny these names can’t be very happy with themselves, and it’s true. (The fact that “retard” is one of the most common insults in Israel speaks volumes about the Israeli attitude toward the disabled.) And then there are all those questions about prenatal tests.
BUT NAME calling is only a symptom of deeper problems.
Generalizing about a very complicated country is a dangerous game but, as the slogan goes, people came to Israel to build and be built. The Zionist ethos is focused on creating a new kind of Jew, one who is strong and independent. Autism – or any other disability, for that matter – doesn’t ﬁt neatly into that picture.
I can only guess that this is a crucial part of why it is often so difﬁcult to get your autistic child the services he (it’s usually a boy, because autism affects ﬁve times as many boys as girls) is legally entitled to. It’s difﬁcult to convey just how hostile toward parents the special-needs bureaucracy here tends to be. It makes other branches of Israeli bureaucracy seem positively benevolent.
I could give endless examples of the bureaucrats’ cruel disregard, even outright contempt – there is no other word – for the families they serve, but I will limit myself to one. A mother I know was told that her four-year-old son was being switched from one communication preschool, the euphemism for preschools for children with autism, mid-year. As any parent would, she asked why. “Why do you need to know that?” the bureaucrat snapped. She had to badger the ofﬁcial until she was told that her son’s diagnosis was changed from moderate, medium-functioning autism to severe, low-functioning autism.
IT’S BEEN an uphill battle to ﬁnd good schools and programs for Danny, but they do exist here. For a decade, he has received individual therapy sessions at the Feuerstein Center, also known as the International Center for the Enhancement of Learning Potential in Jerusalem. Founded and still run by Prof. Reuven Feuerstein, it has a unique method for teaching people who have all kinds of learning problems, including autism.
Feuerstein and his gifted staff look at the child’s strengths, and try to build on them. They also try to ﬁgure out why the child has trouble learning and how to teach him. When Danny arrived there, it was a game-changer, because he began learning to understand the world around him (including spoken language) in a deeper way than he ever had before.
Israelis tend to think everything here is a pale copy of what exists abroad, but that is not true in this case. People from all over the world – the US, Europe, Latin America, Australia, Asia and Africa – bring their children to the Feuerstein Center for intensive treatment.
He also attends a wonderful school, the Magshimim School at the Zionist Village in Jerusalem. The school uses what I call the Avihai Method. The principal is named Avihai Rivlin, and he and his staff simply decided that the pupils there can do much more than anyone else would think they can. In addition to academic subjects, they are learning the skills they need for real life, and they garden, care for animals in the petting zoo that includes goats and ducks (Danny’s favorite activity), learn carpentry, and many other activities.
There is a school newspaper, and the kids interview each other and the staff for it, make up puzzles and take photos. They go on three overnight camping trips a year.
My favorite part of their day is their free-time program. Many kids with autism don’t learn many of the skills we take for granted that all children know – bicycling, rollerblading and riding scooters – so at the school, they teach these skills to the pupils. When they have a free period, they cycle or rollerblade around the campus, and it’s nice to see the freedom and conﬁdence they have. It gives me a glimpse of possibilities for Danny’s future, and it’s a reassuring sight.
BUT THE future is quite scary for parents of young adults and teens with autism. The school system keeps our children until they are 21, but after that they move into the Social Services. The offerings there are improving, but it’s still bleak.
There are large village-type settings for young people with autism, but they are far from the Center of the country, and I would prefer Danny to be in a smaller framework closer to home, with more contact with mainstream people. In the big cities, people with autism tend to live in hostels and supervised apartments, and work in sheltered workshops. I don’t see a future for Danny sitting at a table assembling plastic gadgets – he can barely sit still even when an activity interests him.
In spite of all Danny’s gifts, independent living will not be an option for him, at least not in the near future. For one thing, he is still too impulsive to cross the street on his own, although we’ve been working on that with him for years. He calls cash “fresh money” and credit cards “plastic money,” but doesn’t truly understand the difference between them. There are many other skills necessary for independent adult living that he hasn’t mastered – yet.
When I look out into his near future, I envision a program for him that doesn’t exist yet. I’d like to start a small program that could be a blueprint for other families all over the country. In my vision, Danny would live on a kibbutz just outside Jerusalem, with three or four other young men who have medium-functioning autism, and a small staff. In the morning, they would continue to learn academics and other skills – Danny has only been able to begin to learn academics the past few years, because only now has he started to conquer his hyperactivity (medications such as Ritalin rarely help people with autism, and often have a harmful effect). In the afternoon, they would work in different areas of the kibbutz – caring for animals, gardening, carpentry, etc. At night, they could play music and do art – lots of artists now have studios on kibbutzim.
The idea would be to strengthen and develop the skills that would enable them to live independently one day.
And they would be living in a community of mainstream people, who they would have a chance to get to know.
That’s my dream for Danny, and for people with autism in Israel. I hope awareness continues to grow, and I hope Israelis will get to know people with autism better – and begin to understand that they are just as important a part of Israeli society as anyone else. ■
The writer is the movie and television critic for The Jerusalem Post. Her novel, If I Could Tell You, is available from Amazon, Barnes and Noble and iTunes. Her short stories have appeared in The Jerusalem Post, Commentary and several anthologies, including Love in Israel, published by Ang.-Lit. Press.