Back-to-school shopping, new sneakers and first-day outfits, sharpened pencils and fresh notebooks in oversized backpacks by the door: As a parent, these are the images I’ve come to associate with the start of every school year.
But with my 20-plus-year history as a developmental pediatrician specializing in autism at Albert Einstein’s Children’s Evaluation and Rehabilitation Center, I have an added association with the start of the school year: a particular type of phone call.
The call may come on the very first day of school or by the end of the first week. The typical scenario is that a child arriving for his or her first school experience in mainstream pre-K, kindergarten or (occasionally) first grade is recognized by a teacher, principal or someone on the school staff as being unusual and likely in need of a smaller, therapeutic class setting.
Could the child be autistic? Can you see him or her quickly to help sort this out? These are the kinds of tense inquiries I expect at this time of year.
Familiar scenarios and questions
The scenarios described in the calls are familiar, but varied. I have heard from school staff members about a newly enrolled kindergartener who seemed unable to communicate with staff or peers. Other children have repeatedly run out of the classroom. And nearly every year a child arrives for kindergarten who flaps his hands while spending the first day of school counting the cubbies, or watches the minutes change on a digital clock rather than interacting with his peers.
These inquiries and scenes lead to questions of my own: What is it about these children or their families that has led to such a delay in diagnosis of a clear developmental disability?
We live in an era when autism is a household word and most children are diagnosed with autism spectrum disorder by the age of 3. Parents often initiate evaluation due to concerns about autism, and various systems are in place to screen and refer children displaying behaviors that cause concern. What I’ve learned is that answers to why parents delay seeking diagnosis are as varied as the children themselves, and that parents are not always forthcoming about their reasons when asked.
Why there is a delay in seeking autism evaluation
On one occasion, I received a phone call two hours into the first day of the new school year.. The school psychologist told me of a 6-year-old who had arrived for his first school experience and was presently under the table in the classroom reciting scenes from the movie Cars while rocking back and forth. I found myself assuming that perhaps the child had just moved to the area, perhaps from another country. Or perhaps he was in foster care with a history of neglect. Or perhaps an administrative snafu had contributed to an error in class placement.
When I met with the child and his parents a couple of days later, I was surprised to hear that there was nothing especially unusual about the social history. The mother was in the health care field and the father a college-educated manager. This was the couple’s only child. They were aware that he was not speaking as expected, and also had not been toilet trained until quite recently. These issues were the reason the family had not sent the child to school previously, believing that he was not yet ready for pre-K. The parents felt that he was very smart. He knew his letters and was starting to read. There seemed to have been limited contact with other children, and the family was isolated to a certain degree. They sent him to first grade only because it was mandatory, and they brought him in on that day with their fingers crossed.
Hmm … Was this denial? Lack of information? Isolation from other children and systems that would have set an evaluation and services into motion earlier?
The importance of early autism diagnosis
Contrast that child and his family with another regular occurrence in my practice: A child of 1½, 2 or 3 brought to me by anxious parents with concern that the child’s severe tantrums, language delays or other behaviors are signs of autism. At the end of a lengthy session with a complete history and physical examination, eliciting all of the parents’ concerns and with an opportunity to observe, play with and test the child, I am, on a regular basis, able to assure the parents that autism is not the issue. Rather, it is something more common, readily treatable or likely to improve with development, and not the generally lifelong condition of autism these parents feared.
With autism a household word these days, in the news, a topic of discussion on daytime and late-night TV, it seems as if a family must actively avoid confronting such a diagnosis when signs are present. If there wasn’t a child bearing the consequences of a late diagnosis I could chalk it up to parental choice. But there is a child at the center of these phone calls I receive during the first week of school, and that child who somehow didn’t get diagnosed with autism until 6 years of age missed out on the early diagnosis that leads to the early intervention that results in the best outcome in terms of social and learning capability and family functioning.
As I write this, a new article on identifying and treating infants 6-12 months of age showing signs of autism has been published. The study pilots an intervention (InfantStart) for symptomatic infants and follows them through 3 years of age. At that time, they found that the majority of the small sample experienced resolution of their autistic symptoms and age appropriate learning skills. Wow — identification of autism at 6 months, as opposed to 6 years of age — led to this excellent outcome.
The start of the school year isn’t only about new backpacks and shoes. Intertwined with the new material objects is the excitement and anticipation of another year of making friends, growing, and learning. As a specialist in early intervention, I find my thoughts naturally turning to ways of optimizing each child’s learning. When it comes to children with autism spectrum disorders and other developmental disabilities, early identification and early intervention are vital.
At the start of yet another school year, my hope is that in the future, all children arrive with not only all the school supplies they need, but also having received the therapeutic supports that have readied them for the academic challenges of a new school year.
Lisa Shulman is a neurodevelopmental pediatrician and director, infant and toddler services, Children’s Evaluation and Rehabilitation Center (CERC), Albert Einstein College of Medicine, Bronx, NY. She blogs at The Doctor’s Tablet.