Sabrina, who was given a diagnosis of autism coupled with a rare genetic disorder, has exhibited aggressive behavior since she was a little girl. Now she towers over her parents. When she is happy, she gives them great big hugs, knocking them slightly off balance. When she is feeling shy, she crouches behind them. When she is frustrated, she sometimes hits them.
There have been so many 911 calls this past year that the family invited over several police officers and paramedics to meet Sabrina under more positive circumstances, when they weren’t restraining her or strapping her to an ambulance stretcher.
On that October afternoon outside school, Sabrina eventually calmed herself. It was just another day, soon difficult to remember, as Sabrina’s outbursts accelerated.
What the children and their caregivers are going through is not new. By adolescence, or sometimes earlier, a small percentage of children with autism become unmanageable for their parents, and no amount of parental patience or devotion will change that.
In interviews, parents across New York State described the same scenes of fear and helplessness: being attacked by an adolescent child, now bigger and more aggressive than before. The dread that their child might turn on a younger sibling. Their growing helplessness as their child’s self-injuring behavior — relatively common among autistic children — escalates. The emergency room visits when there was nowhere else to go. And their eventual realization that the family home may be the wrong setting for their child.
"For most older Americans, care will come from unpaid family members or friends, who contributed around $600 billion worth of free labor to the...