By: Matthew Orquia
Omegbhai Uriri first noticed changes in her daughter’s behavior when the child was 13 months old.
“I call it a before and after – bright and outgoing to withdrawn, non-responsive, non-engaging, sort of totally disengaged from the environment that she was in,” Uriri said.
The mother raised her concerns with her daughter’s pediatrician, who told her to wait and that every child’s development is different. When they discovered the child had an ear infection affecting her hearing, Uriri thought the concerns would disappear, but the problem persisted.
By keeping track of her daughter’s behaviors, Uriri was engaging in developmental monitoring, one of the first steps toward recognizing and diagnosing a childhood disability. To catch discrepancies as soon as possible, the Centers for Disease Control (CDC) provides a milestone checklist for children from two months to five years old that shows milestones for social, cognitive, language, and movement development. Parents can also track milestones on the CDC’s milestone tracker app, and experts recommend discussing the milestones with the child’s physician during visits. Uriri, for example, continued to voice her concern with the pediatrician.
“With each subsequent month, she was losing skills,” she said. “So we kept pushing.”
Uriri said her husband was the first to raise the possibility that their daughter might be autistic. As a result, she began researching autism and brought it up again to the pediatrician. The doctor did not think the girl had the characteristics of an autistic child but eventually referred Uriri to a neurologist for further evaluation. The neurologist said to wait until the child was at least five years old before trying to get a diagnosis.
At that point, Uriri’s daughter was almost three, and that’s when a friend recommended the family contact the Tennessee Early Intervention System (TEIS) for further testing.
They were referred to the Vanderbilt University Medical Center, where a pediatric psychologist evaluated the child. After two days of testing, Uriri’s daughter received an autism diagnosis about two months before her third birthday.
Don’t Wait to See
The Centers for Disease Control recommends that anyone uncomfortable with “wait and see” advice from their child’s doctor, seek a second opinion, and call their state’s early intervention system if the child is under three. For children over three, parents can call a local public elementary school (your child does not have to attend the school to be eligible) and ask for an evaluation. The CDC recommends saying this:
“I have concerns about my child’s development, and I would like to have my child evaluated through the school system for preschool special education services.”
Early intervention (EI) and diagnosis are essential because they have been proven to be among the most important things to help children with disabilities. EI is typically defined as care and/or services for children with disabilities within the first five years of life. These early years are when the brain is most capable of change and can be strengthened by positive early experiences, according to The National Early Childhood Technical Assistance Center.
Uriri’s experience with her daughter led to her becoming Community Relations Director for Autism Tennessee, an organization that provides support and resources to caregivers and families working with autism. Now she works to connect people with informational resources to ensure they don’t face the same challenges she faced.
Uriri acknowledged that getting a diagnosis and starting early intervention was just the beginning of the journey, but added that starting at a young age was highly beneficial.
“When I look at her now, I honestly know that if we had not started interventions early, she would not be as high functioning,” Uriri said. “Now she’s independent with her daily activities of living. She brushes her teeth, gets dressed, and takes a shower. But if we hadn’t done the interventions, maybe I would have to be brushing her teeth, getting her dressed.”
Although Uriri’s daughter was able to start receiving assistance at an early age, the therapy she received often had to be paid for out of pocket.
Applied Behavior Analysis (ABA) and music therapy were most effective for her daughter, according to Uriri, but the family had to pay for both because insurance and the child’s school did not cover those expenses at the time. However, the school provided speech and occupational therapy, and eventually offered music therapy.
Uriri said the work required to raise a child with a disability can be infeasible for some families.
“It takes a lot of work; it takes a lot of energy, and the honest truth is some families cannot afford the time commitment that it takes to do all those things,” Uriri said. “The best way to help families is to have programs that directly serve them in a way that’s convenient and easy to access.”