Though Andrea Libutti spent eight years studying to become a doctor, the only time she heard the word “autism” from the professors at her elite medical school was when they told her she was unlikely to see more than a single case of it in her entire career.
So when her first-born son Jack suddenly stopped looking at his parents at the age of 17 months, she did not put two and two together.
“Almost overnight, he just disappeared,” Libutti said. “He stopped looking at us. He started spinning everything he could get his hands on. He would grab the dog bowl and just sit there and spin it.”
Libutti enlisted the help of a professional psychologist, who followed her toddler around their home for almost four hours, trying and failing to engage with him. But she was still completely unprepared when the psychologist handed her a piece of paper with a diagnosis of severe autism. “My whole world came crashing down,” Libutti said.
“It was almost like I was taken out of my body,” she said. “If you’re handed a terminal illness diagnosis for your child, it’s probably a similar feeling. Because I just felt like all hope for his future was wiped out.”
Ten years later, Jack is a happy, healthy, thriving 12-year-old boy. Libutti, who still works as an emergency room doctor at Eastern Long Island Hospital, is the published author of a book about parenting an autistic child and recently started an online community to offer support and guidance to other parents like her.
“Once you go through the grieving process of losing that normal life you thought you were going to have, you realize all the amazing, beautiful blessings that you are going to learn from parenting a child like this,” Libutti said.
Just 30 years ago, only about one in 2,000 children was diagnosed with autism. That rate has grown explosively since then. In 2014, the Center for Disease Control and Prevention estimated that 1 in 68 children have an autism spectrum disorder. For boys, the disorder is even more common – one out of every 42.
“Even just 10 years [before Jack’s diagnosis], autism wasn’t something doctors were learning about,” Libutti said. “It just wasn’t on my radar.”
Since then, the medical community’s understanding of autism spectrum disorders has grown, but there is still a lot left to learn. For parents of newly diagnosed children, the amount information about the disorder – some of it conflicting and confusing – can be overwhelming.
Part of Libutti’s mission is to make information about autism available to parents in an accessible, comprehensive format. “There’s so many different channels of information on all the different aspects of the disorder,” she said. “I want to take all the different aspects – therapy, diet, supplements, behaviors – and put it all under one umbrella.”
To that end, she published a book last April through Hay House called Awakened by Autism. Part memoir, part guidebook, it details the journey of her son’s diagnosis and her search for answers and treatment.
What she found was the benefits of viewing the disorder from new perspectives – starting with the way parents and professionals are taught to understand the disorder.
“There’s this generation of children being raised under this umbrella of behavior modification, being told to stop what they’re doing day in and day out,” Libutti said. “I think there’s a more gentle approach that can be tied in with that.”
Children with autism often exhibit unusual, repetitive behaviors, such as rocking back and forth, walking around on tip-toes, twirling in circles and flapping their hands. State-funded therapy treatments, such as applied behavioral analysis therapy, tend to focus on stopping and discouraging those behaviors.
Libutti believes there’s a better way.
“It’s less about forcing the child to conform to what we want them to conform to, and instead approaching the child in a way that is respectful to them, to try to understand what is driving the behavior,” Libutti said.
Children with autism often have trouble processing sensory information and can become easily overwhelmed by everyday situations. That can lead them to engage in an unusual behaviors to try to soothe themselves , Libutti said.
“Hand-flapping isn’t socially acceptable, so we want to stop that behavior, but there’s a reason she’s hand-flapping,” Libutti said. “She’s got a sensory system that’s completely overwhelmed and out of whack. She’s doing the best she can to soothe herself and take care of herself.”
By demanding the child stop the behavior without understanding what is driving it, Libutti says a parent can actually cause the child to become further withdrawn.
“If you can approach the child with respect to try to understand the behavior, and take steps to help her with her environment and the stimuli overwhelming her, it will foster a human connection with her,” she said.
“It creates a lot of stress and anxiety and inability to move forward with these kids when you try to force them to do things your way, without that understanding,” she said. “And then why would they want to connect with you?”
For children struggling with sensory overload, an overwhelming classroom environment can also hold them back from reaching their full potential. When Jack was going into third grade, Libutti noticed that her son was becoming further and further withdrawn.
“I was losing him socially,” she said.
She found a homeschooling program called Son Rise that is geared specifically toward autistic children struggling with social interaction. She made the decision to pull him out of school in the third grade and has been homeschooling him ever since.
The results, Libutti says, have been astounding.
“Before, he wouldn’t look at his teacher, he’d be resistant, he’d throw tantrums, he would be totally disconnected,” she said. “Now he sits down and attends to her for two hours straight.”
Under the tutelage of his mother and two tutors, Jack is now reading aloud, writing in cursive, learning math at grade level and even beginning to speak Spanish.
“The last three years is probably the most significant progress that he’s made,” Libutti said.
Jack’s story speaks to another common myth about autism, she added. “A lot of parents feel like they have this really limited window – like, if I don’t do something now, by the time he’s five or six he’s going to be stuck like this forever. And that’s just not true.”
The most important thing that parents can do for an autistic child, she says, is to find their child’s strength and “run with it.”
“Every kid has a strength,” she said. “These kids are brilliant in many aspects. When you focus on their strength, you’ll find the key to opening up the future for that child.”
For Jack, that strength comes from his musical ability. He has always had perfect pitch, which means he can identify the pitch of a note just by ear. Because of this, his parents decided to get him piano lessons last October.
“And his piano teacher, who has never taught an autistic kid, is just amazed,” Libutti said. “He can just hear a piece and play it. He knows all the notes.”
A child’s autism diagnosis can be a life-changing and terrifying moment for a parent. But after parents get through the initial grieving process, Libutti hopes that they can see the blessings that their child’s future can hold.
“I just hope I can help parents look at it from a different viewpoint,” she said. “I hope they realize that it’s not hopeless. Their lives could really be amazing. These kids are really brilliant. There’s a lot of hope for them.”
