I recently returned from a 10-day vacation from my position as a developmental pediatrician. I specialize in the early identification and management of autism at Einstein’s Children’s Evaluation and Rehabilitation Center. The night before returning to work, I decided to check my voicemail.
Since my last vacation, a new office voicemail system had been installed. It seems that I now have an unlimited amount of space for messages. Even though I left an “out of office” message with a host of options for redirecting calls to another number, I found that I had 79 messages. I pondered a plan for responding to this deluge.
I decided to start by organizing the messages based on urgency. There were 50 calls that I deemed urgent in one way or another. I think that the pattern of the calls represents an accurate sample of the types of issues facing families of children with autism.
Thirty of those urgent calls came from parents whose children I had seen previously, though some not for several years. The majority related to frustration surrounding lack of therapies or problems with a school placement. Parents described concerns that their children had made no progress over the past year or even regressed; that their children were denied needed services; that they had been found ineligible for various school programs for children with autism. There was a frantic phone call from a parent whose child had been thrown out of daycare for aggressive behavior and another from the mother of a young adult who had aged out of his special-education program but for whom no supervised work situation had been found. The mother was unclear who would stay home with him since he couldn’t stay alone and she worked.
There was a call from parents desperate for a place in a group home because the father had become ill, and another call from the mother of a teen with Asperger’s who had begun college but was having significant difficulty. There were multiple calls from parents asking for help in obtaining ABA services, an evidence-based treatment for children with autism that can be difficult to find, and a family who wanted me to speak to the lawyer they had retained to help them sue the city for a private-school placement.
Then there were the calls from frustrated, tired parents experiencing difficulties relating to their children’s behavior. There were children who had left the apartment, or run away in the street. There were children who were behaving aggressively. One situation had resulted in a relative being seen in the emergency room. Others children were very hyperactive or not sleeping and their parents begged for medication. There was a family referred to the Agency for Children’s Services by a neighbor due to their child’s nonstop crying. There were families that had lost their Medicaid and needed a medication refill. Nearly each and every message overflowed with raw parental emotion and stress.
Twenty of the urgent phone calls represented new referrals, children not yet seen at the center. Typically the calls came from either a mother or a father, but there was a smattering of grandparents and foster parents, a call from a daycare provider and a call from a pediatrician.
The calls from the parents and grandparents were the most heart wrenching. Four of the new referrers called twice, with the second message in each case clearly more desperate for help than the first. A number of the parents sounded panicked, practically crying on the phone. They said such things as: I was reading an article on the early signs of autism in toddlers and I recognized my son. I read something. I heard something on the news, or on late-night TV. A friend of mine said. My pediatrician said. I got together for the first meeting of a Mommy and Me group, or for a reunion with my Lamaze class. I went to a family get-together and my aunt expressed concern. These calls often come in late in the night or in the wee hours of the morning, the concerns clearly keeping the callers awake.
As I peruse this list of “emergency” phone calls I responded to the next day, I experience a flashback to a conversation I had with my pediatrics chair 25 years ago.
That was the day I told him that I was planning to pursue fellowship training in developmental pediatrics. This was a change in direction for me from another specialty, and the chair, whom I loved and respected, expressed his disappointment. He used strong words along these lines: “Pursuing child development as a specialty would be a waste of my training and my mind.” It was a hard conversation for me but I remember telling him that I felt this was where my passions lay and where I felt I could make the greatest contribution. He ultimately gave his blessing.
When my plans became known to my fellow residents, I took quite a bit of ribbing. Most of them were going into ICU, emergency medicine or cardiology. They would joke that while they were dealing with the real emergencies, I would get paged in the middle of the night with developmental emergencies such as: “Doctor, doctor, my child isn’t speaking!” to which I would surely respond that it could wait until the morning, or next week, or next month’s or year’s appointment.
But as my phone messages clearly document, there are developmental emergencies. Concern about autism on the part of a parent or grandparent is an emergency. Public service campaigns have made it clear that it is important to diagnose autism as early as possible, the sooner to begin the behavioral therapy that has the potential to yield the best outcomes.
Parents with concerns about autism in their toddlers are in great distress, concerned that the life they want for their children is at risk, and that every minute counts in the race to early diagnosis. But even with a diagnosis, the emergencies are far from over. Parents view themselves often in a “fight” for the quality of life of their children with autism: fighting for educational and therapeutic services, against systems that make things more difficult than necessary, that are frankly adversarial or that don’t seem to understand the stressors parents of children with autism are dealing with on a day-to-day basis.
So, yes, there are developmental emergencies and I responded to each and every phone call and I’m working out a plan to address those emergencies one by one.
Lisa Shulman is a neurodevelopmental pediatrician and director, infant and toddler services, Children’s Evaluation and Rehabilitation Center (CERC), Albert Einstein College of Medicine. She blogs at The Doctor’s Tablet.