ROCHESTER, NY (WXXI) – When Leilani McDonald was 2 years old, her mom became concerned about some of her behaviors.
Jennifer McDonald said her daughter wasn’t talking and would only make certain noises. Leilani would often marvel at her hands, and clap while walking in circles.
“I let it go for a little bit, but then I was like, let me just bring her in and get her evaluated just in case,” McDonald said.
Leilani was diagnosed with Autism Spectrum Disorder, or ASD.
According to the Centers for Disease Control and Prevention, ASD is a developmental disability often detected in early childhood that can cause significant social, communication, and behavioral challenges.
The CDC says about 1 in 54 children has been diagnosed with ASD in the United States.
It’s been two years since Leilani’s diagnosis, and McDonald said she still has moments when the emotional and mental demands of being a caregiver for a child with ASD are overwhelming.
“I’ll go inside the bathroom, just for a quick second, and I’ll cry,” McDonald said. “But then I’m like, you know what, let me get myself together, everything’s going to be OK.”
Parents often feel isolated after their child is diagnosed and in the early years, said Lisa Ponticello with AutismUp, a local nonprofit that provides support and resources for over 2,700 families.
“You don’t feel like anybody really gets it,” Ponticello said. “You yourself are still sort of exploring what’s going on and you’re sometimes jumping ahead to what will be, what might not be, and it’s you know, it’s too soon to do that.”
Ponticello said AutismUp has a private Facebook group where new caregivers can vent and get judgment-free support from a community that understands.
The group currently has over 1,200 members.
She said the benefits of this parent-run support group ultimately trickle down to helping your child’s development.
“Once you’ve built those relationships with other people, you feel safe, and you’re more willing to get involved,” Ponticello said. “You’re more willing to get your child involved in something that maybe you resisted because you were afraid.”
McDonald said she still relies mostly on her mother for support. She said she wasn’t aware of the Facebook group, but will consider joining.
She said for Leilani, she’d do anything.
“At the end of the day, she’s an amazing child, and I love her to death,” McDonald said.
This story is reported from WXXI’s Inclusion Desk.