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Year of Awareness: Autism
As a young elementary school teacher in her early 20s, Michele Iallonardi’s knowledge of autism was limited.
“What I knew about autism back then was like, your kid seems fine and then all of a sudden, they have autism.”
For Iallonardi, that limited understanding changed suddenly when her son Jackson was diagnosed with autism; he was just 2 years old.
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“At around 12 months, I brought him to have an evaluation,” she said, recalling her concern when her son would not respond to her.
After what she described as a frustrating yearlong process including countless evaluations and therapy sessions, Iallonardi decided to look elsewhere for answers.
“I pursued other opinions, and he was diagnosed with autism when he was a little over 2 years old,” she said. “And I wasn’t shocked, but I was devastated.”
Iallonardi’s son is part of a growing population. While previous statistics from the Centers for Disease Control indicate that 1 in 88 children is diagnosed with autism, new numbers recently released show an uptick to 1 in every 68 children.
Even so, some see a silver lining.
Jennifer Keluskar, a clinical psychologist who works with special needs children, said as diagnoses and treatments evolve, so does the possibility of complete recoveries for many, if not all, of those who are diagnosed with autism.
“Our hope is to get individuals with autism to the point that they’re functioning well in society,” she said, such as finding “appropriate employment” for their abilities and sustaining friendships and other relationships.
A big part of the ability to achieve full recoveries, Keluskar said, is identifying the disorder as quickly as possible. “The earlier the autism is caught, the better the outcome is likely to be.”
Ten years post-diagnosis, Iallonardi said her son’s life has seen some significant improvements since being diagnosed. Iallonardi, now a board member of the Nassau-Suffolk Autism Society of America, said it took years to find a school that supported Jackson’s needs, but doing so was a blessing.
“Two years ago, we finally found a school that he loves, that we love, that’s perfect for him,” she said, adding that the Brookville Center for Children’s Services, which is a 40-minute bus ride from their Hauppauge home, allows him to participate in activities like art, music and yoga, all with the one-to-one support that he needs.
But her family still faces challenges.
She spoke about a time recently when Jackson got off his school bus and was upset but he was unable to tell his mother what was wrong. Iallonardi said it’s heartbreaking to comfort a 12-year-old the same way you would a baby.
“I hug him, I rub his head, I rock him,” she said. “Those are the things that I can do to help my 12-year-old, so that’s heartbreaking.“
Keluskar said she thinks the biggest importance of Autism Awareness Month is raising understanding and acceptance of children with autism.
“There are some people, for example, that still believe autism is the same as intellectual deficit -- or what we used to call mental retardation -- and that’s not true,” she said.
For Iallonardi, the month takes something of a different meaning.
“I think awareness is great, but, I feel what’s more important is action.”
She said while the traditional awareness items like bumper stickers, pins and T-shirts are great, they don’t do enough to create an understanding about the hardships created by autism.
“For autism awareness month, I encourage people to reach out to a family who has a child with autism, invite them over for dinner, invite them over for a playdate, offer to watch their kid or just be a companion to them or a friend to them.”
To Iallonardi and her family, the gift of normalcy is the greatest one of all because “when you have a child with autism, your life can be very isolating.”