Like many people with autism, my son Danny enjoys Pixar movies and he likes seeing them over and over. Recently, one exchange from the original Toy Story movie started going through my mind.
Buzz: Sheriff, this is no time to panic.
Woody: This is the perfect time to panic!
For me, it’s the perfect time to panic, because Danny turns 21 next week and this is his last year of school. Since he was diagnosed with autism at the age of three, I hoped that he would be able to live and work independently when he grew up. I fought for him to be in mainstream classrooms with a shadow teacher when he was younger. And Danny is doing very well, but he hasn’t “lost his diagnosis.” He is friendly and loves to talk. But he’s more likely to chat about our cat that died during George W. Bush’s first term than tell you about what he did today. He loves going to all kinds of places, but can’t travel on his own because, although he navigates like a GPS, he is so impulsive that he doesn’t look both ways when he crosses the street.
He has been working on these issues for years, but it would be absurd to think that he will master them by the end of August, when his school year ends.
Nothing in my life has ever been as scary as trying to figure out what will be with Danny when his father and I can no longer care for him. It’s like knowing you will have to jump off a cliff and not knowing whether your child will be left wandering alone near the edge while you are on your way down.
We live in Israel, and for the first time, I feel that I would probably be panicking even more if we were in America, where we’re from. When the US has a commander-in-chief who openly (and gleefully) mocks the disabled and the incoming Secretary of Education will not affirm her support for the Americans with Disabilities Act, this truly is the perfect time to panic.
In Israel there is still the lingering legacy of the country’s quasi-Socialist past, which means that there is some commitment to caring for the most vulnerable people. There are some good work and residential options for those with autism. But there aren’t nearly enough of them and those that exist need more funding than what they receive from the government.
So the non-profit programs here raise money – or try to – from private foundations and donors, mostly from America.
And in America, well-meaning but misguided disability activists have been focusing on funding only programs for people with autism that are “in the community,” meaning that any work or housing option where special-needs people are together is verboten.
I spoke to an American disability-rights activist a few years ago about creating small apartments and outdoor workplaces in rural areas for people like my son. But the activist’s goal was “changing attitudes” toward disability, and suggested my son live with mainstream people his age.
I tried to explain to him that there are no college students who would be willing or able to build their work, study and social schedules around giving my son the 24/7 support he needs, but the activist wouldn’t listen.
Yes, acceptance is a good goal and it’s nice that there is a muppet with autism on Sesame Street now. But acceptance won’t get my son across the street safely. As Kim Stagliano, the mother of three daughters with autism, wrote in the online newspaper, Age of Autism, last year, “Acceptance means nothing until programs are prepared.”
In Israel, there are some wonderful therapeutic communities for people with special needs, among them Kishorit, a kibbutz in the Western Galilee, which offers a wide array of living and work options. Its members get the supervision they need to live as independently as they can. Parents in Israel — and even from abroad — would do anything to get their children into Kishorit. Kfar Tikva is another special-needs community, with a similarly long waiting list. An organization called Shekel provides residential, work and leisure activities for people with special needs all over Israel.
But none of these programs would satisfy the activists.
Insidiously, disability activists’ political correctness is playing perfectly into the hands of the most inhumane budget-cutting bureaucrats and politicians, and it looks likely to get worse in the US under President Trump.
Last summer, in a moving article in Rolling Stone about his son, Luke, who has autism and fragile X syndrome, Paul Solotaroff wrote: “That word – ‘integration’ – is a stealth missile these days. It’s being used by executives in state and federal governments to champion the rights of autistic people while defunding their programs and housing options.”
I’d like to invite the disability activist to whom I spoke, and all those who share his philosophy, to spend an hour, just one hour, taking care of a low-functioning person with autism. Call it the Autism Challenge.
I suggest this challenge for two reasons. One, obviously, is so that they can learn, first-hand, how much skill and patience it takes.
The second is that they may find these people on what researchers Helen Tager-Flusberg and Connie Kasari have called “the neglected end of the spectrum” –those who cannot speak for themselves and who lack the skills to blog about how autism is just part of their identity –to be likable, funny, interesting and worthy of serious attention.
Once these activists look more realistically at people with autism, they should develop and fund much-needed programs that will help those on the spectrum to thrive.
I’d love it if someday the Toy Story line I won’t be able to get out of my mind would switch to, “I’m not worried. You shouldn’t be worried.”