An autism mom explains how receiving a diagnosis at an early age can benefit your child’s development.
It all started with the spinning.
I remember walking into our living room and seeing my six-month-old son sitting upright on our hardwood floors, spinning his toy aquarium bowl as if his life depended on it. I recall thinking, “I’ve never seen him do that before.” Although, to tell the truth, he had just begun sitting upright, so he hadn’t yet had the opportunity. I walked past him into the kitchen, started lunch, and thought no more of it.
Soon the spinning would become an obsession, with Justin relegating hours to manipulating any round object he could get his hands on to move in his desired concentric circles.
Looking back, that was one of the first signs that my son was developing differently.
There were other signs too—he didn’t sleep through the night, not even once, until he was 10 months old. Reflux was his constant scourge. He spent many hours unhappy despite my best efforts and howled whenever we took a ride in the car. I had known motherhood would be hard. I just hadn’t known it would be hard all the time.
My son is on the spectrum
My eldest son Justin eventually received an autism diagnosis at the tender age of 17 months, one month after a disastrous pediatrician’s appointment whereby my son’s physician thrust some misprinted articles with the word “autism” in the title at me as I was hustled out the door, shaken and distraught.
Receiving a diagnosis at 17 months was incredibly early back in 2004 (it’s still early, even now). At the time, we were living in Virginia, where Early Intervention (EI) services are spotty at best. My adopted state did not recognize an autism diagnosis back then in terms of therapy—we would eventually receive only six hours’ occupational therapy (OT) and two hours’ speech therapy per month, compared to the 35 hours per week of a mix of therapies we would eventually have when we relocated back to New Jersey.
After Justin’s diagnosis we hired a Board Certified Behaviour Analyst (BCBA) to train us and two other therapists so that we could deliver about 35 hours a week of Applied Behavioral Analysis (ABA) therapy to Justin. If my memory serves me right, we were able to start his program when he was 19 months old.
Had we known he had autism around the six-month mark—he could barely sit up at that point—I’m not sure what type of intervention we would have offered him. As it was, I was constantly talking to him, engaging him, trying to make him happy. I don’t think the extra year of therapy would have changed things drastically. However, an autism diagnosis at such a young age would have been extremely helpful for other reasons.
Adjusting to our newfound reality
As soon as we got the diagnosis we were thrown into a whirlwind of tasks to accomplish. We first had to hire a BCBA and interview and hire therapists to help us. My husband had to navigate the world of insurance to see if any of this was covered—which it wasn’t! We had to tell family and friends. There were hours spent on the internet to see if there were any treatments we deemed safe and effective to try.
Basically, autism consumed our entire lives.
Benefits of an early diagnosis
The fact is, it is helpful to know as soon as humanly possible if your child is on the spectrum because there is so much to accomplish. Even if EI in your state is excellent, there are still home visits to hold and potentially a waiting period until therapists can be found.
At the time, in New Jersey, there was a six-month waitlist to get into any developmental pediatrician’s office to obtain a diagnosis, which is helpful when going through the process to be identified for preschool special education. The latter took about four months until Justin was eligible, a process we were able to start months before he turned three so he could start school right on his third birthday.
The truth is, the earlier you know, no matter how hard it is, the better.
My advice to any parents out there who have concerns about their child’s development is don’t wait—ACT EARLY. Make that appointment with a developmental pediatrician even if there’s a long wait. Call your local EI agency and set up evaluations as quickly as you can. All of this may take months—DON’T DELAY. Tell your family and friends about your concerns so you can get a support system started as early as possible.
It may turn out your concerns were for nothing—but, if you are correct, you’ve already begun helping your child just by being aware that they may need help.
Make those calls!
Just remember that at this early age nobody knows how things will turn out for your child. Have hope for a safe and happy life.
Never give up!
This article was featured in Issue 120 – Epilepsy: High Risk for ASD Kids