That was the first sentence on the front page of a newspaper in Albany, New York, this past weekend. The people who I saw reading it, in Saturday's edition of the Times-Union, all cried out in horror. It's the words "autism" and "disabled." They stop you, frighten you and break your heart, even if you don't really know what the word autism means.
And yet, at this writing that sentence from the newspaper is, in essence, the sum and total of everything most of us know about the death of Jonathan Carey.
And those words beg more questions than they answer.
Since I am the mother of a 19-year-old son with autism, people looked up from their newspapers and asked me, weakly, if I could guess at more. I told them that guessing was all I could do since I'd never met Jonathan Carey. But, I had a good hunch. Parents like me do. He sounded like a kid whose disability caused "behaviors," known less euphemistically as tantrums. A kid who, with the right techniques -- some of them educational and not spur-of-the-moment -- and the right well-trained aides could have been "contained" safely. His picture on the front page of the newspaper shows a skinny adolescent, more than a head shorter than his father. My own son, Dan, is muscular and more than six feet tall and, sometimes, he has those behaviors, too.
As for Jonathan Carey's short life: His parents kept him at home until he was nine years old but still not toilet trained. Ultimately, they put him in a highly touted private residential school hoping he would learn, simply, to go to the bathroom. They had to rescue him from that school. They said they found him bruised and lying in his own urine and they filed a law suit and railed at the government to back up their very strong suspicions -- and to get their own son's records, which were closed to them due to guilt masquerading as "privacy."
Jonathan Carey's parents then moved him to a state facility, a large institution where they said he was happy.
But, as part of a trip to the mall, sanctioned by that facility, he died
I don't live in Albany but this past weekend I traveled up there with my younger son Jack, who was playing in a hockey tournament. Along with being an excellent defense man, Jack is his brother's devoted "typical" sibling -- not an easy role. Before I left, another autism mother wrote me that I should enjoy my time with the "norms." With "normal" children. It would, as she and I knew, be good for Jack, too. He could revel in being away and forget about what goes on at home.
But as we drove North from Long Island, at a rest stop on the New York State Thruway, a boy in the parking lot clutched his younger brother as if he was afraid his sibling would run into traffic. The little brother looked old enough to know better but then he started to flap his hands. Far from the worst symptom of autism. But one of them, nevertheless.
Back in the car, Jack mused about his own brother: "When I was little I felt so alone. No one knew what was wrong with Danny. Now there are so many people like him." I started up the car, wondering how to respond. "Not that, that's good, Mom," he finished.
We got to Albany the night before Jack's first game and went to visit a cousin who told us about a mother with a newly diagnosed son. And about someone else who did not know what to do with an autistic teenager.
And then there was the news about Jonathan Carey.
Jack was among those who read the newspaper story and he was not so much shocked as indignant.
According to the front page article, we know that Jonathan Carey liked horses. Kids with autism often do, even if sometimes the horses move too slow and make them impatient.
As the days, weeks and months unfold we can only hope that his parents and younger brother will find out what really happened. It isn't much compared to a living kid. But in lieu of that, the facts could be all that they have.
Maybe there will also be some miniscule comfort for them if those facts help to prepare us as a society. Because when it comes to autism we are woefully unprepared. According to very recent news, one in every 150 children is being diagnosed with autism. We don't know how to cure those who need and want to be cured - or how to respond to the individuals who merely ask us to understand them a little better.
Even worse, we don't know how to keep them safe.