— April 5, 2019 —
The doors of the daycare fade in the rearview mirror as I steer my Ford Fusion toward Maple Avenue, easing into the flow of a Friday rush hour in the Chicago suburb of Naperville. It’s nearly 6 p.m. and my Dear Daughter (DD) is in the backseat, strapped in her car seat, sipping a smoothie and snacking on Lay’s barbeque chips. Suddenly, she blurts out, “Bluetooth audio.”
Boss me around. (“Daddy, go upstairs!” when I catch her doing something downstairs that she shouldn’t be doing).
Make requests. (“Chase me! Chase me! Please! Pretty pleeeeease!”).
Command attention. (She amuses us by singing the jingle from a TV commercial for a company that does home installations: “For quality windows, siding, and doors, call 866-4FELDCO”).
Express her feelings. (“I miss Daddy,” she told DW one morning last month when I was away on a business trip.)
The key to DD’s increasing vocality boils down to three letters: ABA. In June 2018, she started sessions of an evidence-based behavioral therapy known as applied behavioral analysis (ABA). Within three months, her expressive communication accelerated.
Like most things in life, everything is not for everybody. Some of my fellow autism parents shared that ABA did not help their child progress in ways they had hoped. That’s the thing about autism treatments and interventions, one size does not fit all. There are several approaches and each must be tailored to address a child’s specific needs. We feel fortunate that DD is responding well to ABA.
I wish she’d been able to start therapy sooner but, like so many autism parents, we had a six-month wait to see a developmental pediatrician for a medical diagnosis (required for insurance to cover the high cost of therapy).
Then we spent another six months switching to a health plan that covers ABA as a standard benefit and working with DD’s therapists and childcare team to arrange for 25 hours of therapy to be delivered each week—at her daycare. We felt it would be good for DD’s social development to receive ABA in a setting where teachers and staff have helped us care for her since she was six months old.
Having been with DD since she started early intervention services at 19 months, her childcare team has been a witness to our family’s autism journey and a key source of support. They too have noticed DD’s increased verbalizations since last summer and have marveled at her overall progress.
“It just goes to show that a developmental delay is a comma, not a period,” one of DD’s teachers said.
This inspiring perspective has echoed in my mind of late with the observances of both World Autism Awareness Day (April 2) and World Autism Month.
April is that time of year when you hear about the buildings and landmarks across the globe that are bathed in blue light to raise awareness about ASD, which the Centers for Disease Control and Prevention estimates effects 1 in 59 children in the U.S.
But as the advocacy organization Autism Speaks notes, the reported prevalence among white children is 7 percent higher than African-American children and 22 percent higher than Hispanic children – “pointing to potential missed or delayed diagnosis in those groups.”
That’s why I was happy to see Autism Speaks launch a public awareness campaign this month to encourage parents to have children screened for autism early and seek a diagnosis if needed. The campaign features Julia, a four-year-old Sesame Street Muppet with autism (pictured below), as well as resources at ScreenForAutism.org, a website also available in Spanish at DeteccionDeAutismo.org.
“Though autism spectrum disorder can be reliably diagnosed by age 2 for most children, the average age of diagnosis in the United States is between 4 and 5,” Autism Speaks said in a press release. “Early intervention is crucial; it can translate to a lifetime of impact by supporting healthy development, improving communication, decreasing challenging behaviors and leading to positive outcomes later in life.”
I’m reminded of the miracles that can manifest from early screening every time my daughter reaches a developmental milestone or simply belts out a chorus from “Ring My Bell.”
Early intervention works. Diagnosis brings services. Services bring hope.
Hope is powerful and necessary, but often not enough for some families and communities. The most recent research shows that socioeconomic differences play a key role in identifying autism: Children living in neighborhoods where incomes are low and fewer adults have bachelor’s degrees are less likely to be diagnosed with ASD compared to kids from more affluent neighborhoods. This finding was published in 2017 and is part of a major study of ASD led by Maureen Durkin of the University of Wisconsin-Madison’s Waisman Center.
So while we ring the bell on the importance of early screening, we must also continue to sound the alarm on the social inequality that drives disparities in diagnosis and, ultimately, life outcomes.
This post was originally published by the author at FatherhoodAtForty.net.