Autism | Our Diagnosis

Rivers is autistic.  

Thats really hard to type, harder than I expected.  I’ve known on some level for years, I can back date the red flags to before he was crawling (what’s thats saying about hindsight?).  By the time we had our medical evaluation it was simply a formality.  I did not shed a tear, I was not emotional, it was simply something that I checked off my to do list that day.

Acceptance though, that’s a different story. 

Let me back track a little bit. There was a time I thought I couldn’t have kids.  And not just because we tried without success (we did); but I was told so, by an expert.  But he was wrong.  And every day I am so thankful he was. We miraculously were able to have children without fertility treatments.  I may share more on that journey later.  But I feel like it’s important to understand the ache of an empty womb and the desperation I felt to become a mother. 

All the flags were there.  Speech delays, motor delays, excessive stimming (I’ll elaborate on this later) and sensory issues.  But navigating the world of parenting for the first time, I had no baseline for what is considered “normal”.  By the way, I hate the world normal, and you will likely never hear me say it again.  But seems fitting in this context. Around 2 and a half I sought out an evaluation.  The primary concern was speech, but he was a hand flapper and those two things together were basically the only signs needed to diagnose him with autism.  Only, they didn’t. 

ECI was an amazing experience for us, not everyone can say that.  But we are the lucky ones, it was perfect. But at 3, we aged out and moved to the school district.  Much to my surprise, he qualified for PPCD (preschool programs for children with disabilities).  His speech was doing so well, and he really had few other concerns developmentally so I was shocked.  Not to mention, he didn’t have autism right? 

I opted out of PPCD initially.  Probably my deepest regret (so far) as a mother. He was still napping at the time, and they only had an afternoon spot available.  And I foolishly thought a “regular” preschool would be better for him.  He would be around “normal” children and somehow absorb their normal superpowers.  I bet you can guess how well that worked.  But needless to say, we found ourselves in PPCD, which was transformative.

We continued in private therapy as well. At this time the therapist expressed their concerns with autism. I dismissed their assessment as we had been evaluated twice (neither time medically) and neither gave us that diagnosis.  I mean what do therapist, who specialize in neurodiverse children, know about autism anyway right? 

We continued down this blissfully ignorant path for several months. But the signs were there, I noticed. And if I am being honest, Rivers did not have many behaviors I considered autistic. I have since learned that there is no “autistic” behavior. It’s a spectrum. Every child is unique just like every human is unique. And yes there are many commonalities, but autism presents itself in different ways for different kids.

Our official diagnosis came late in 2018; he was 6. It was an 18 month waitlist from the time I applied to the Child Study Center to our actual appointment. I could have gone elsewhere, there are plenty of pediatricians that will diagnose autism with a considerably shorter wait. But I needed that time. Time I could live in denial, or at the very least, hope. Time that I could process what I knew was inevitable. Time to get comfortable talking about autism. I still need time.

But here is the thing. I don’t want you to feel sorry for me, or for him. He is incredible. And he is so much more than his diagnosis. Autism comes with struggles; it’s a journey and I won’t pretend it’s easy. It is not.

But most days are wonderful. I have been given this gift, an extraordinary child. He is the kindest person I have ever met; he doesn’t have a mean bone in his body. He willingly shares his favorite toys, he finds things his bother would like and gives it to him. He is amazing. If only every human was this kind, we would live in a beautiful world. Most boys his ages play baseball and video games. Rivers’ favorite thing to do is use painters tape to make handles for random objects and try to get doors to close “by themself”. His favorite toy is a safe. He is completely unaware that these are things most people do not find enjoyable or fascinating. His world is magical and interesting, a place where painters tape sparks joy. If only life were that simple for the rest of us, am I right?

So this is a little bit about our story. It’s a little sappy, and it’s not particularly eloquent, but it’s ours. Thanks for reading.