We were fortunate to have our boys’ autism diagnosis at an early age. People frequently ask me how I knew, so I thought I’d share how we got to this point. I touched on our autism diagnosis journey somewhat in a previous post, but I thought it could be helpful to go into more detail.
How it all began
It was December of 2014 and the twins were at Crash and Speedy’s 12-month well visit. All the usual questions ensued.
“Are they walking?”
“Yes, last month.”
“Solid foods?”
“We’re trying, but it’s not going well.”
“Any words?”
“None.”
I looked at the floor, willing the feeling of dread slowly rising in me not to flood me. Not here, not now.
“What about babbling? Any repeated syllables?”
“No, not really.”
I watched my boys motoring around the exam room in their diapers, silently, and with no indication that either of them realized there was anyone else in the room.
“Well, Meg, I think we refer them to the state intervention program. They were premature, and I’m pretty sure there are some developmental delays.”
He went on to explain that, because their respiratory systems had been so underdeveloped at birth, they’d spent most of the last year just trying to breathe, which didn’t leave them much time or energy to be clever. I agreed and we went ahead with the evaluation to see if they were delayed enough to be accepted into the state program. They were.
Next Steps
Fast forward a few months, and one very stressful stint in PICU with RSV, and we’re meeting with our Early Interventionist for the first time. She smiled, greeted them enthusiastically, and stood back to watch. I was so nervous, wanting her to see the best in my boys. She sat me down and had an entirely different set of questions for me.
“I see a lot of spinning. Crash spins himself, and Speedy spins objects. Is that a regular thing?”
“Yes, we think it’s kind of funny.” I chuckled a little sheepishly.
“Do they ever acknowledge each other? Play together?”
“No.”
“What about X-man? Do they interact with him at all?”
“No, but to be fair, he doesn’t really initiate with them, either.”
“What about toys? What are their favorite toys?”
“Well, Speedy likes anything he can spin…”
“I can see that.”
“And Crash is too busy climbing or spinning in circles. He really doesn’t play with toys.”
“And the spinning, how long does he spin?”
“He can go 15 minutes or more. He usually stops spinning and starts climbing. Then back to spinning.”
“And you told me that they’re not really on any solid foods yet?”
“No, anything with any kind of texture makes them gag if I can even get it in their mouths.”
She paused, obviously weighing her words very carefully.
“Meg, how much do you know about autism?”
Naively, I answered. “A good bit. I taught several kids on the spectrum in my orchestra classes.”
“Ok, but what about younger kids?”
I admitted that I hadn’t had much experience in that area.
“I see a lot of kids, Meg, and I’ve gotten pretty good at seeing things that maybe you as a mom could miss. We should probably have them evaluated for autism.”
She went on to explain how that works in our state and what steps we needed to take to get the wheels in motion. After she left, I turned to them in a daze. Suddenly, it was like someone took the blindfold off. There it was, right in front of me, and I had missed it. I knew that day that we owed that EI everything and more.
Not the end of the story
A few months later, had the exact same conversation about X-man, with the exception of his verbal skills. X-man talked early and was extremely articulate from the beginning. He could recite episodes of TV shows he liked, and tell you all about the different kinds of trains, the parts, and how they worked, but as far as carrying on a conversation, he just didn’t. As preschool progressed, his teachers would comment in amazement at his intelligence. They also expressed frustration at his inability to sit and attend, or his tendency to get upset if there was a break in the routine. They were also concerned at the difficulty he had interacting with his peers, with his rigid rules for play and general inability to “pretend play”.
“What you’re dealing with is two different parts of the spectrum,” our EI told me. “X-man is what we might classify as high-functioning. He’s highly intelligent, very verbal, and enjoys being around other people his own age. But he’s got some fine motor delays, some sensory issues, and is definitely having some social difficulties.”
“On the other side”, she continued, “the twins aren’t verbal, they have significant fine motor and sensory delays, and there’s pretty much no social interaction at all. They’re in their own little worlds. But I think you need to start trying to get your head around having three kids on the autism spectrum.”
Of course, she was right, and over the course of 18 months, all three of our boys were diagnosed with autism. I see the hand of God in the whole process because it all started with the pediatrician at their checkup and has continued through today. I would have completely missed the signs had it not been for that doctor and that EI.
Just Do It!
Everyone’s story is different. Every child with autism is different. A common saying in the autism world is “If you’ve met one child with autism, you’ve met one child with autism.” Please don’t look at our story and think a lack of similarity means there aren’t still things to consider. If I’m being perfectly honest, I knew the twins would have a hard time long before they were born. You can call it intuition, mama gut, whatever, but I’ve learned to trust my instincts where my children are concerned.
I can never stress this enough; if in doubt, ask for an evaluation. You have absolutely nothing to lose, and everything to gain. Early intervention can be a game-changer. Your child will always have an autism diagnosis, but early intervention can give them coping skills, social training, and self-regulation skills that they might not learn otherwise.
Where we are now
My kids have a long way to go. The twins are still largely non-verbal, and still show many of the markers for autism and developmental delay. X-man struggles in social settings, although we’re fortunate that he’s young enough not to notice much. He’s also still a very picky eater and has executive function delays. But, for all the challenges we still face, my kids have made amazing progress. X-man can hold a pencil and is writing and illustrating stories), and he has a couple of friends that he plays with at recess. Speedy and Crash have really come awake this year at school. They have made great strides in all areas and are general favorites in their classes and therapies. In this life, milestones are measured in inches, and it gets frustrating at times, but progress is progress. From where we started to where we are now, there’s just no comparison. Early intervention is worth it. Period.
An autism diagnosis can be very scary. It won’t do me much good to say otherwise. But there are plenty of supports out there for a parent facing a diagnosis for their child. One such support is my Facebook group, A Break from the Chaos. We are all about being supportive, positive, and encouraging wherever we are on the journey. Feel free to join us there!
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