When I hear that ping between 7 and 9 p.m., my heart leaps, because I know it’s my son, Danny, messaging me.
Danny, who is 21 and has autism, recently became a member of a kibbutz for people with special needs in the north of Israel, where he works in a recycling center. He’s having a great time, making new friends and living more independently than I would have dreamed possible just a year ago. He still comes home for the weekends, but I don’t think I’m on his mind much during the week. These messenger chats are more for my benefit than his.
Last year on World Autism Awareness Day, my son was still in his final year of school, and I was incredibly anxious about the future, as if I were stepping off a cliff with no net.
And I wasn’t alone. Parents all over the world who have young adult children with autism search hard for places like this kibbutz, where their children can flourish and achieve some measure of independence.
I am American, but Danny’s father is Israeli, and we moved to Jerusalem when our son was 4 years old. I stayed in Israel after Danny’s father and I divorced partly because I knew it wouldn’t be any easier for Danny in the U.S. My New Yorker friends who have children with autism were having just as tough a time figuring out their kids’ futures. Israel has many problems, but it also has universal health care and many services and benefits for people with disabilities (though there’s always room for improvement).
I was incredibly anxious about the future, as if I were stepping off a cliff with no net.
The worldwide shortage of adequate programs for people with autism has been written about often, especially in light of significant cuts in Medicaid funding in the U.S. this past year. The kibbutz where Danny lives, like most special-needs programs in Israel, is financed by a combination of government funds and private donations, but even the best and most successful programs constantly scramble for more funding ― in Israel, in the U.S. and around the world.
Never has it been so essential for people in the autism community to come together and fight back against these draconian cuts.But there is a crisis within the autism community, one that makes unity impossible, and that’s the lack of agreement about what autism actually is and what people on the autism spectrum actually need.
Many disability activists on the autism spectrum work, live independently and advocate for more tolerance in communities and the workplace. But there is another side of the autism spectrum,a side professors Helen Tager-Flusberg and Connie Kasari have called“the neglected end of the spectrum,” comprising people who can’t speak for themselves.
Even within this group, we see a great range of abilities and needs ― some with limited speech are still able to express themselves, but others struggle. However, a common thread is that many, and perhaps most, of these individuals need 24-hour supervision. Otherwise, they may wander off and get hurt. A recent study out of Columbia University found people with autism were three times more likely to die of injury than the general population. The average age of death for an individual with autism? Just 36 years old.
As the mother of a son who is generally categorized as “medium-functioning,” I loathe the high- and low-functioning labels attached to people with autism, so I will avoid them here. But however you characterize the two sides of the spectrum, it’s a fact that there are no reliable statistics on how many people with autism can live independently vs. how many need constant supervision and support.
Those with the loudest voices tend to get the most attention in situations like these, and in the world of autism, those who can speak for themselves often seem to advocate without considering the needs of those who can’t utter a word. This divide makes it difficult to navigate the reality of what my son ― or anyone else with autism ― requires.
In an ideal world, Danny would have told us what he wanted when he finished school, and we would have honored his wishes. But in the real world, things transpired much differently. A representative of the Israeli social security administration visited my son’s school when he turned 18 to determine if his father and I should be given legal guardianship. One of the questions the representative asked was where Danny wanted to live.
His response? “I don’t want to talk about it.”
Change scares Danny, and we introduced him to kibbutz life gradually, with plenty of visits and overnights long before he moved in. Had Danny been able to participate in this discussion about his future, I can’t tell you how delighted I would have been. But at a meeting about a potential group home setting, the head of the organization turned to Danny after describing the home and asked if he had any questions.
Danny said, “How are you feeling?”
Even the best and most successful programs constantly scramble for more funding ― in Israel, in the U.S. and around the world.
My son is one of the lucky ones who can speak, but Danny still can’t make long-term choices ― and, as he told us clearly, he doesn’t want to.
Everyone on the autism spectrum should be considered when deciding how to allocate resources, including those who write about inclusion policy, those who can’t say a word and everyone else in the middle. Not knowing the number of people on each end of the autism spectrum muddies the waters to the point where it’s hard to think clearly, let alone create policy. Dr. Stephen Shore, a professor who is on the spectrum, once said, “If you’ve met one person with autism, you’ve met one person with autism.” This makes it very difficult to improve life for those on both ends of the spectrum.
I don’t know the best way to bridge this divide but, as they say in Alcoholics Anonymous, the first step is admitting you have a problem. I do know, however, that the divisiveness that has driven the debate about autism policy in the past does not help anyone.As Steven Shapin wrote in The New Yorker, “Neurodiversity activists confront parents of severely autistic children in exchanges that are as full of pain as they are rich in irony.”
People on the autism spectrum (and their families) often suffer unavoidable pain, and infighting within this community only adds more stress. The conflict between the highly articulate activists and the families of those who can’t speak for themselves means that this community can’t properly address policymakers.That makes it much easier for the budget cutters to take away much-needed services ― and avoid introducing new ones.
Before he ends our chats — usually by telling me he loves me and that he wants to go to sleep — Danny asks me to confirm when I’m picking him up for the weekend, and I do. He wants to be at the kibbutz, living his life, but he also needs to know when he will next see me. Any autism policy needs to embrace these contradictory needs and the needs of all people on the spectrum.
Hannah Brown’s novel, If I Could Tell You, is about families raising children with autism. She is the movie and television critic for The Jerusalem Post and she has written for many publications, including The New York Times, the New York Post, Newsweek, Jewish Quarterly and The Daily Beast.