I spoke to Joe about the time he spent describing the Benedicts’ quest to help Sabrina for this article. He visited the family and kept in touch for months. He watched and listened as Sabrina’s parents endured the daily setbacks and breakdowns that had become difficult and even dangerous because she had grown bigger and stronger than both of them.
What is most revealing about the family situation?
What really struck me is that there are hundreds of these families, like the Benedicts, who are clearly in crisis, and they are surrounded by a range of organizations and agencies that know they are in crisis and agree that there are something has to be done, but nothing happens for months and sometimes years.
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There’s a mismatch between what government agencies agree on and the family’s experience — hours of battle many times a week, sometimes by the side of the road, often involving multiple police officers, often in the freezing cold.
Why has the pandemic made things worse?
In March 2020, people’s routines and structures collapsed — routines that are even more important for autistic children. The son of a Brooklyn father couldn’t accept that the school was closed. Until his father drove him and showed him that his school wasn’t open, he wouldn’t go on for the day. This would repeat itself over many days.
So there has always been more demand than residential school places that may be ideal for some children with greater needs like Sabrina, but that has now become a bigger mismatch as more families are in crisis. It takes years and in the case of the Benedicts, the father had to quit his job.
Is there a fear that calling in the police could lead to children being shot?
There was definitely the fear that the next encounter would be terrible, that she would be Tased or worse. In her case it is a small town. The rescuers knew the family. Sabrina would leave school and walk along a busy road. There was a real danger of being hit by cars.
What does society not understand about this problem?
Many autistic children do not have these problems. But there are others in worse situations than the Benedicts. We really need more words in our language – for crisis, for family responsibility. I wouldn’t have understood the behavior and the burden on the family if I hadn’t seen it.
