I don’t even like to think about it—having a child with autism, a constant living source of pain—yet Margie Dienstag has found courage and purpose in her fight for her son and has joined with others. At a recent meeting, where she was the very last to speak to the Mayor, she told a horror story of her son acting out in response to a hidden pain and being rejected by hospital after hospital. Finally, she told hospital staff, “OK, don’t take my son, take me,” and then “do with my son what you will.” After Margie relayed this nightmarish encounter, de Blasio paused and quietly asked that she talk to his assistant to set up a personal meeting. We will report on the Mayor’s actions in the next issue.
As an advocate for special needs, I have, for the last few years, met with mothers who have poured their hearts out to me about the nightmares they live with their children who have autism. Every child is different, yet every one of these stories created the same fear, the same horror for me—because I knew these stories were real—and I too might sooner, rather than later, cross this horrific bridge.
I have supported a friend through her ordeal with her son Chris, a nine-year-old autistic boy, who has spent several months going in and out of emergency rooms because of uncontrollable tantrums. I first went down this path when my son, Ryan, was taken to Bellevue a year ago. He was so out of control that I felt it was unsafe to take him home; he needed to have his medications adjusted.
We made the trip by ambulance from his afterschool program. Once there, Ryan calmed down after four hours. They told us that they didn’t know what to do for him—it was best to take him home. The second trip was to Roosevelt Hospital; I brought him in by taxi. We waited again for over four hours, spoke to several nurses, a fellow psychiatrist, and a pediatrician, only to hear that there was absolutely nothing they could do, and were asked to leave.
Finally, on January 8th, Ryan, whose medication again seemed to need adjustment, had a huge episode at school. He came home still uncontrollable, and went into such a rage with his caretaker that we had no choice but to call 911 and demand to have him evaluated. This tantrum looked more like a psychotic episode, so he was rushed to Beth Israel (according to the EMS, Bellevue was not taking any incoming patients). Once there, they were adamant that he was in the wrong place. The doctor only gave him some Ativan to try to calm him, even though they saw how out of control he was. Again, he was dismissed without anything, not even a thorough examination.
Thirty-six hours later, this time unable to control him at home, I took him to St. Luke’s, where I was told by a friend that they have a Comprehensive Psychiatric Emergency Program (CPEP). An exam was done, and they discovered that Ryan had a severe ear infection and a swollen testicle. A sonogram was performed confirming some congenital abnormality and fluid retention. At this point, they decided to keep him in the pediatric psychiatry unit.
After four days, Ryan went home, having increased one of his medications. During his doctor’s visit the following day, he had such a major meltdown that the EMS took him back to St. Luke’s. This time, he had to be given shots of Thorazine for at least two days. They increased another medication, and after six days, he was released. None of the tests requested by his doctor were ordered—not even the neurological testing. While there, I asked for a pediatrician to check his sinuses and his tongue. Apparently, once in the psychiatric unit, no doctors come in for visits. I was told to go and see his regular doctor as an outpatient, or take him to the ER.
Obviously, there isn’t one single hospital that is equipped for care of kids with autism in crisis. The rare times when they do take them in, it is only to warehouse them, to give the parents a very short break. The City needs to address this calamity. We need a dedicated autism clinic where parents can take their children in times of crisis. What is available now is not adaptable to those with autism—it is for mental health patients—nor is it suitable for patients who suffer from sensory issues. We need professionals who know and have experience working with autistic patients.