Evan has autism.
He was diagnosed just before his second birthday.
Autism is a lifelong condition that does not go away.
There is no cure and nobody disputes his diagnosis.
“Tell them I said it’s a slam dunk,” one of his doctors recently told me, referring to a call that I was about to make to get Evan scheduled for hours of appointments and testing required for another autism diagnosis. “Maybe that will somehow eliminate some steps in the process.” To get our health insurance to cover ABA therapy (Applied Behavioral Analysis), Evan needs a current diagnosis, even though he already has one from what the insurance company would consider “an approved autism evaluation center” and even though autism doesn’t exactly go away.
Seriously, five minutes of observation is probably all anyone needs to confirm that Evan is on the spectrum. Plus, we probably have enough autism-related paperwork to fill an entire boxcar on a freight train. From school IEPs to doctors’ notes, we’ve accumulated more reports than Americans had complaints about the last presidential election.
Yet because we want insurance to cover this intensive and expensive ABA therapy, we find ourselves on a six-month waiting list for a current autism diagnosis.
That’s right. Six months to tell us something we already know. What about those families that don’t know? They are on that same list, and we are delaying their diagnosis because ours isn’t current.
Ask Evan. He’ll tell you he has autism. Mostly he’s proud of it, but today was one of those exceptions.
This morning, we were outside, waiting for the bus, when suddenly, he sprawled himself face down on the cold cement and shouted out for everyone to hear, even though no one did, “I hate autism. Autism sucks.”
What he hates is the sound of sirens. The noise. The unpredictability of when they will come and how long they will last. It’s an all-out assault on his senses. Even though he has been dealing with this for almost his entire life, Evan has yet to find the ability to tolerate the sound of sirens even though it typically lasts for no more than 30 seconds.
His response to hearing the sound isn’t pretty. The severity of his reaction depends on how his day has been going. Today, he was already agitated because the bus was 20 minutes late.
After being outside for 15 of those minutes, we heard the distant wail of what was probably a fire truck. It didn’t matter how faint it was; Evan heard it.
“Go away you stupid truck!” he shouted. He continued to scream and cry and probably threw in some kicking for good measure. His actions and language were uncomfortably close to being violent. In truth, he isn’t the kind of kid who would intentionally hurt someone or himself, but he cannot control these meltdowns. We’ve tried, with limited success, to address these behaviors. Now we hope to use ABA to help Evan help himself navigate through a world that can be unpredictable and scary to him when it doesn’t play by his rules.
Insurance companies are notoriously frustrating; it’s as though they must be difficult to survive. I think they figure we’ll give up before we jump through all their inexplicable rules. We will not give up. In this case, we have no choice but to play by their rules. We will call to see if there are cancellations, we will stay on multiple waiting lists in hopes of getting the soonest appointment (also not fair to other families) and we will hang on for the entire six months if we have to just to get my son a diagnosis he already has – and wears proudly on most days.