So You Got an Autism Diagnosis. Now What?

How one family navigated the challenges of getting services and help

By Elizabeth Varela, publisher of Macaroni Kid Lakewood, Calif. April 25, 2019

April is autism awareness month. Macaroni Kid publisher Elizabeth Varela, who lives in Lakewood, Calif., shared her family's journey after her son, Raul, was diagnosed with autism in 2014.

My husband and I started to suspect something wasn't quite right about our son's development when he was just 10 months old. He didn't smile much. He didn't look for us when we called his name. Instead, he stared blankly at the ceiling and didn't make any attempts to interact with us. 

He was officially diagnosed with autism when he was two.

Getting a diagnosis is scary for many parents because you don’t know what that means for your child. For others, it’s a relief to finally know what is causing your child to act the way he does.

For us, it justified what we already suspected about Raul and answered many concerns about his behavior. But it was also terrifying and overwhelming. 

We were first-time parents. We had no family history of autism. We didn't know anything about it or know anyone on the spectrum.

That meant I had so many more questions than answers in those uncertain days.

Was this a disability? Did this mean he had social issues? Did he have a learning disability? What did autism mean for his future? What should we do next? How can I help my son?

Raul, who was diagnosed with autism at 2.

Asking the right questions and taking the right steps in a timely manner can be crucial in getting the right services set up for your child. But not knowing where to start can be paralyzing. 

For us, it felt like there were too many questions and not enough people to help answer them in those early days. Here is how we moved forward during those first months of our family's autism journey:

1. Ask questions

I asked a million questions of my son's pediatrician and the pediatric psychologist who evaluated him. I asked even when it seemed repetitive or if the answer seemed obvious. I shared my vulnerability and ignorance with them. I didn’t know what the diagnosis really meant for my son other than he had autism and he would have some challenges, so I asked everything I could think of about autism and what to expect.

2. Be persistent

We were told Raul would need occupational, speech, and behavior therapy and that we should wait to hear about a referral. We waited a week, and then I started calling. If my son needed all of that help, why were they taking so long to call? To me, every minute counted. No one will fight for my son as much as I will. Doctors and insurance companies see hundreds of kids with autism every day. But to me, this was very personal. So I kept calling. Raul was not going to fall through the cracks.

3. Understand it takes time

But even while I was persistent, I soon realized that setting up services takes time. It took us just under three months to get the actual services started for my son. It seemed too long to me, but I've since met other parents who waited more than a year to get services started. While I got frustrated making daily calls and sending emails, I feel like we benefited from that work because we didn't have to wait as long to start his therapy. By the time Raul was two and a half, he was receiving 45 hours of therapy and early intervention a week.

Raul at an early intervention class. 

4. Seek out support

Talking to our pediatrician and psychologist helped me gain knowledge about autism, as did talking to other parents who have kids on the spectrum. They let me in on what they knew, which gave me new ideas on where to turn for help. I also joined several support groups online and in person. I truly believe in the autism support community, which welcomed every question I thought to ask. 

5. Find an advocate

We found advocates who work on Raul's behalf. Raul's regional center caseworker and his case supervisor turned out to be two of my favorite people in this world. They helped with transitioning us into a school, understanding IEPs, and making sure we knew our rights as parents and the rights of our son. 

My son is now six and a half and while we are still on a path with a lot of twists and turns, we feel that we are headed in the right direction because we have established the support we need to move forward in a positive way. That support, along with our love, means our son will thrive.

Elizabeth Varela is the publisher of Macaroni Kid Lakewood, Calif. These are her experiences of finding support for her son with autism while living in California. Each state has different laws and policies in regards to insurance and services, so your experience might be different than her family's.