Federal Judge Edward Korman prefers to be direct, and he doesn’t take no for an answer.
When his daughter was first diagnosed with autism more than 30 years ago, there wasn’t much support for families with children on the spectrum. In order to get the support their daughter needed, The Kormans were going to have to find their own way.
The Kormans first noticed things were not quite right when their daughter was only about 18 months old. “She seemed to have a kind of selective response to sound,” the Judge told Autism Speaks in a recent phone interview. “Drop a dish on a tile and there would be no reaction at all… on the other hand, she obviously heard things… she heard things on Sesame Street, music or something, and she would go to [another room] because she heard it…”
At first they were worried it might’ve been some kind of ear infection, and so they took her to their pediatrician.
“She said it was nothing.” He recalled.
This would not do, so the Kormans took their daughter to what is now the New York Center for Hearing and Communication to see if they could diagnose the problem. There she was tested for hearing difficulties.
“They made these tremendous noises and asked my wife to act as if nothing had happened. Well, the reflexive response in her eyes ruled out a hearing problem.”
They were then referred to New York Hospital where their daughter was diagnosed with Pervasive Developmental Disorder.
“At that time it was useless. It was an unhelpful diagnosis because you couldn’t start educating yourself on what to do. Nowadays you can google the phrase, but back then— they had the word ‘autism’, but nobody was using it.“ He laughed slightly at the memories of their frustration during that time.
Their next step was to find a pediatrician who would take their concerns seriously.
‘The thing that I liked about [their new pediatrician] was that she’s was a no-nonsense woman and she told us right away that she doesn’t deal in sugar-coating stuff... ‘she was gonna tell it to us the way it is, not the way we wanted to hear it.’
In the battle to find a diagnosis, the first victory was won, but it was only the beginning.
The Kormans tried anything they could to mitigate their daughter’s challenges. First, a kind of "therapeutic nursery" which the Judge described candidly as "a total waste of time," then a program in New Jersey before finally settling at a school for autistic children in Staten Island.
The school initially refused her entry because she was too young, but once again the Kormans’ persistence paid off and their daughter was able to receive the support she needed.
Their daughter was now in a supportive environment where she received help, but the challenges didn’t end there. Judge Korman spoke openly about some of the difficulties special needs families face now. “ABA for 12 hours a day is very costly—there aren’t enough resources.”
The rise in prevalence estimates of autism over the last several years has raised significant awareness to the point where many families can now get some of the support they need. “Thirty years ago there weren’t as many of us, but nowadays it keeps growing.” Recent CDC estimates place that number to be one in every 88 children has an autism spectrum disorder. “It is of course, a problem that so many more are diagnosed, but at least we’ve reached what I call a critical mass so that more families can be heard and get some of the support they need.”
And Judge Korman is well aware that need doesn’t stop when a child becomes an adult. “What people don’t realize is that these children grow up and that they still need help. And what happens after [the parents] are gone? My wife is eight years younger, so hopefully she’ll be around for a bit.” He said, adding another small laugh as he acknowledged the complexity of the situation.
Having two children on the autism spectrum-- their son is also on the spectrum but much less severely affected, having graduated from college and is high functioning--has influenced the way Judge Korman handles his professional career as well..
Although ironically he himself has never presided over a case involving a person on the spectrum, he has, according to a recent article in the New York Times, occasionally increased awards to families who have members with disabilities or other impairments.
“I understand the practical implications of families who are affected by things like this.” he said, citing the way another judge, Thurgood Marshall, helped to educate his colleagues about the realities that African Americans faced. By simply sharing with his colleagues some of his own first-hand knowledge of life with a child on the spectrum, Judge Korman has raised awareness throughout the judicial system and beyond.
This practical knowledge has also had a direct effect on how damage awards have been given out under this tenure. “I want to make sure that not only the child is secured, but the family receives some help as well.” He acknowledged that many people see, rightly or wrongly, those with disabilities as a burden to the family, and so in his opinion they do deserve a little extra help.
Judge Korman and his wife visit their daughter weekly and are encouraged by her progress. “People don’t quite understand this, but one milestone in our lives was when she began to understand the difference between yes and no.”
Judge Korman’s spirited tenacity has helped him discover the blessings of having children on the spectrum. He noted that his late father was very close with his daughter. “Sometimes these things bring out reserves of empathy that people don’t realize they have. It was almost that he loved her even more because of it.”