Our Autism Diagnosis, 9 Years Late – Scary Mommy

Our Autism Diagnosis, 9 Years Late

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So, my nine-year-old is autistic.

I can’t tell you how many times I sat down over a 2-month period and tried to formulate something that boils down to these three little words: Rex has autism.

“Hi Ms. Valentine,” the school psychologist said over the phone one day last October, “Do you think you could come in this week so we can go over Rex’s IEP results?”

Rex has had an IEP since he first started public school, but the move to Nevada required a full accounting and new testing.

No problem, great, I was happy to go in and talk about Rex. He was doing amazingly well, he loved 3rd grade and his reading and writing had progressed in leaps and bounds. Of all my kids, Rex had made the smoothest transition from Germany to Las Vegas.

I sat across from the school psychologist and happily leaned in to the visit, thinking this was an easy review and I’d be out in a flash. My military husband was away on temporary duty assignment for a four-month stretch and I was handling things alone, but for a basic meeting it was no biggie.

“So, isn’t Rex doing great?” I said.

“Well, he is doing great. He’s an amazing kid, I’ve spent a lot of time reviewing his IEP this past month and talking to his teachers,” the psychologist started.

“Yeah, they send great notes home and he’s just flying along,” I said. Clueless.

“Yes…um…his testing was very extensive in Germany and they really did a thorough job,” she said.

“I know. We had an awesome group working with us there.” Still not picking up on her body language, tone of voice, hesitancy. She continued.

“Well, I really think…I mean, after talking to his teachers and his speech therapist…well, we really think Rex is autistic.”

Silence.

What? “What?” I kid you not, my tongue went numb and my throat started to close. I felt like I’d been unexpectedly punched in the nose.

“We’ve been observing him and I feel like we need to run a few more tests, with your permission of course.”

“Wait, I don’t understand,” I said, trying not to throw my shoe at her head. “We have had him tested—repeatedly—since he was 5-years-old. Specialists, amazing developmental psychologists…you are telling me that every single one of them missed this? That you’re seeing something different?”

She then went on to explain that while they had tested him more than once for autism, many of the symptoms don’t really test out until after the age of 8 or 9. For example, you can tell a 6-year-old, “It’s raining cats and dogs,” and they’ll look confused because they don’t get it. But a 9-year-old isn’t that literal. They pick up on social cues and know instinctively when a person is joking.

Rex misses those things. Completely. Tingling sensations started in my legs and my head felt abnormally heavy on my shoulders. She continued to talk.

For a moment all I could hear was one thing: your boy is broken. He’s not progressing; he’s not catching up; he’s not like the other kids. It’s not just quirkiness and anxiety, he doesn’t work right and he’ll never work right and you can’t fix this and and and and…

It is a very humbling moment for a parent, the moment when you choose to step out of the protective emotional bubble you have so carefully created and really listen to what someone is trying to tell you. Something that had worried me and bothered me even though so many great doctors had ruled it out. Were they all wrong? Was I fooling myself?

I was alone, my husband was so far away, I had no family and no friends to lean on, I felt like the weight of Rex’s diagnosis was resting on my shoulders. For 10 seconds I considered leaving. Just walking out, refusing to speak to this woman who had the nerve to suggest that my child—

“Okay. What do I need to do? If you think it’s possible then let’s run the tests. Can we start now?”

It was the hardest thing I have ever said in my entire life and I had to say it fast before I lost my nerve.

Suffice it to say, by the time we were done with the first test (it was given verbally and demanded that I really consider some of the tiny clues I had so conveniently glossed over in my mind) I knew. I knew it, I knew what the other tests would say, I knew that even though he was the exact same boy he’d been when I walked into the meeting, I was changed.

I sat in my car and couldn’t even leave the parking lot. I called a girlfriend and she let me cry really ugly for a long time. Gah, I can hardly write this because it makes my throat tight. I can just see that beautiful blond boy of mine who loves to—”spend alone time”—with his terrarium. He’s so charming and so delighted by the simplest things. He’s bright and kind and thoughtful, he worries about me and his stuffed animals alike and loves alliterations…

And he’s autistic.

It didn’t take long for our reaction to his diagnosis (my husband’s was very positive and amounted to total relief) to click into place with a sense of rightness. You don’t know how liberating a diagnosis can be until you finally have one and decide to embrace it. No more worries about his animal obsession, his food anxieties, his social oddities or his complete inability to tell when his dad is teasing him. It explains so many things.

My boy is autistic and that knowledge has changed our life.