Early diagnosis made a world of difference for my autistic son

This is a post by Kimberlee Rutan McCafferty, author and mother to two sons on the autism spectrum and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). Kim is also the author of a blog about her two children with autism. And the author of the book called Raising Autism: Surviving the Early Years. 

When my eldest son was an infant, he rarely slept, and if then for short periods of time.

We had such a difficult time with breastfeeding.

While there were periods where he smiled and laughed and gazed into our eyes, there were many more times when he was cranky and fussy and we felt we couldn’t reach him.

At six months he started spinning everything in sight.

I took all these concerns to his pediatrician in 2004, but was told he was hitting his milestones, and not to worry.

When he wasn’t babbling as much as I thought he should, I was told he was probably following his father’s trajectory, a boy who didn’t speak for years and then communicated in full sentences when he was three.

My gut said he was different. The doctor said he wasn’t.

Until the day we went into his office for a scrip for reflux when my boy was seventeen months old, and walked out with a bunch of articles with the word “autism” in the title and a referral to a developmental pediatrician, as we were basically shoved out the door.

It’s 2023, almost twenty years later. My advice is this.

If you have any concerns about your son’s or daughter’s development, insist on seeing a developmental pediatrician or neurologist. It will probably take at least six months to get an appointment. Make that call.

In the meantime, contact your state’s Early Intervention and get the ball rolling on that. If your child is approaching three, contact your school district and start the process. Both take months.

My point is, don’t wait. Waiting won’t change a diagnosis. But not waiting can change the outcome.

My boy got his autism diagnosis at eighteen months, which was extremely early in 2004. Within a month I got trained and delivered thirty-five hours a week of ABA, hired two therapists to deliver another five hours, and made do with Virginia’s scant services of a few hours of OT and speech a month. I was a teacher, and although I had little experience with autism I was able to pick up the concepts quickly.

I do believe that early diagnosis and early treatment made a difference. If nothing else, it taught my son how to learn. Eight months after we moved to New Jersey he started pre-school at a little over three years old, and he did well. I believe all the ABA prepared him for it.

He learned to love school. He’s only been in three, and according to his teachers has enjoyed them all. He can communicate using his iPad to get his needs and wants. He can read on a first grade level. He can type in searches to a computer.

He smiles more.

I truly believe early diagnosis made a huge difference in his life.

If you’re concerned about your son or daughter, make the calls. If your child’s pediatrician demurs, insist.

If it’s your grandchild/neighbor’s son/grandniece, say something. You don’t have to say the word “autism”, just let the child’s parent know you’re concerned.

Don’t wait.

Waiting will never change a diagnosis.

But it can change a life.