By Kathleen Gaither, BSN, RN
Receiving a developmental delay or disability diagnosis for your child feels like a gut punch. Suddenly, questions flood your mind. What caused this? What does the future look like? Where do we even begin?
You may feel guilt, fear, and overwhelming uncertainty. To make matters harder, your pediatrician may not always have the answers, especially if most of their patients are neurotypical children.
This was my reality thirteen years ago with my son.
In 2013, autism rates were reported as 1 in 50. Today, they are closer to 1 in 31, according to the CDC.
First Steps
Our journey began when our son was about eight months old. He was not meeting developmental milestones, and due to ongoing concerns, our pediatrician referred us to First Steps Indiana.
First Steps provides early intervention services for children with developmental delays or disabilities. Therapies take place in the home, allowing children to learn in their natural environment. Services continue until age three.
Our son required speech therapy, occupational therapy, and behavioral support due to global developmental delays.
Aging Out of First Steps
When our son turned three, services ended.
Now what?
He still needed support, but we were suddenly on our own. I returned to our pediatrician for guidance, but the only resource provided was a flyer for a “special needs” information fair.
That phrase hit me hard.
Then came the words I wasn’t prepared to hear:
“Your son is demonstrating symptoms of autism.”
That was my breaking point.
As a nurse, my mind immediately jumped to outdated and inaccurate stereotypes. I thought of scenes from Rain Man and memories of a classmate who struggled significantly in school. I began to wonder: Is this our future?
Meanwhile, my son’s symptoms became more pronounced. He stopped making eye contact. His tantrums lasted for hours. He couldn’t communicate his needs. Sensory challenges grew, and his diet became extremely limited.
I knew early intervention was critical. But what did that actually look like now?
There was only one option left: attend the information fair.
ABA Therapy
At the fair, I felt overwhelmed by the information. But one approach stood out: ABA Therapy.
Applied Behavior Analysis (ABA), as defined by Autism Speaks, focuses on improving positive behaviors and reducing harmful ones through reinforcement.
A Board-Certified Behavior Analyst (BCBA) conducts an assessment and develops a personalized treatment plan.
We chose in-home ABA so I could be involved and carry strategies into daily life.
However, when our son reached kindergarten, we encountered another barrier. Our school district did not allow outside therapists in the classroom. This forced us into half-day school and half-day therapy.
Eventually, we had to stop ABA altogether, despite medical necessity. It was a frustrating and disheartening experience.
Family Supports Waiver
At the same fair, I learned about Indiana’s Family Supports Waiver.
This program provides services for individuals with developmental disabilities living at home. To qualify, families must apply for Medicaid, but parental income is not considered for children.
However, a qualifying diagnosis is required.
The Waiting Game
Wait times for services can range from eight months to three years.
When selected, families receive an invitation letter and have 30 days to respond. From there, you meet with specialists, choose a case management company, and begin building a care plan.
This process is time-consuming and often overwhelming. Finding the right providers may take multiple attempts.
But it is worth it.
Our Diagnosis
Getting a diagnosis is not easy. Waitlists can stretch for months or even years.
Our son was evaluated by a psychologist and diagnosed with PDD-NOS, a classification used at the time for children who did not meet full autism criteria.
Today, under the DSM-5, conditions like PDD-NOS and Asperger’s have been consolidated under the umbrella of Autism Spectrum Disorder.
Getting an Evaluation
If autism is suspected, pediatricians may refer families to specialists such as:
- Developmental-behavioral pediatricians
- Child psychologists or psychiatrists
- Pediatric neurologists
Today, finding providers is much easier through online searches. That was not the case when we began our journey.
A Better Path Forward
Looking back, there is one thing I wish I had known sooner:
You don’t have to navigate this alone.
Organizations like Easterseals provide a centralized approach, offering evaluations, diagnoses, and therapies all in one place. In fact, Easterseals is a First Steps provider!
Having that kind of support early on could have reduced so much stress and uncertainty for our family.
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Links Towards Help
