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The Journey of the Diagnosis: Autism Spectrum Disorder

Autism Spectrum Disorder. In 12 years of teaching, I’ve heard this word truly thousands of times over. From strategizing for a student, to special education IEP meetings with parents, to professional development meetings on ideas to help kiddos. However, the last five months have shown a side to ASD I never imagined nor could have genuinely understood unless I walked a mile in my own shoes, the same shoes so many parents have worn on the other side of the tables in those many meetings to help their child succeed. The things I didn’t realize in all these years was the journey of the diagnosis, the challenges with insurance and therapy, and the confusion of all the details in Autism Spectrum Disorder.

Our journey began last fall with a concerned eye on the fact that my little man – who was on the verge of his 2nd birthday – wasn’t speaking. He wasn’t even really babbling or making much in the way of noise. (However, somehow he still managed to learn and say NO with mastery. That’s sheer toddler power in-play LOL.) There were other things as well – an incessant need to line up his belongings, dislike of loud spaces, and an incredibly hard time reacting to any communication from other humans were just a few. The day we took the photos attached, he had a full-blown meltdown over the…THE WIND (see below as he wanted to cover his ears)!  So, there we were. What began as a conversation with First Steps to start their process of therapies once weekly, became referrals to Riley Pediatric Diagnostics to then conversations with Autism Therapy facilities.

In six months, over days and days and days, sometimes I’ve been on the phone with insurance and exploring the therapy and government disability services waivers for upward of three hours at a time. Other days, I’ve gone in-person to sign documents, take tours of therapy centers, and meet with doctors. All the while, trying to balance our normal life in career, health, and home. In the midst of all these various appointments, we all ended up pretty sick for a stretch and then too, a couple days had to be taken from working, something I don’t love, but as a mom, I’m learning to accept that thankfully the majority of people don’t even realize HOW MUCH TIME is involved in getting services situated for a child with my son’s needs which aren’t even a shadow by comparison to what many families need facilitated.

That phrase, “Be kind, for everyone is fighting some battle you know nothing about,” Has really resonated with me. We have been going to parties and gatherings and it’s not like I wear a billboard that says, “My child just isn’t into playing with the group,” Or, “Please realize that saying his name repeatedly – and LOUD – is not how things work for us.”  I’ve had days at the grocery where he has been over-stimulated and wanting to climb on basically anything he can find, and the leering look from other parents that he’s just ill-behaved hurts my stomach to internalize. NO, the climbing you see and the grabbing you watch is just part of his passion to explore something with his mind that his mouth couldn’t explain at the time. But there I’ve been, feeling insecure because people don’t know us personally. Be kind.

What I didn’t know were the headaches that come with the insurance for Autism (ABA as it’s called) Therapy.  We have a gracious plan that will (praying as I type that) cover 100% once we get all the exact diagnostic tests run in a few weeks.  There are SO MANY STEPS.  First, the referrals which take 10-ish days to go through, then the calls to set up the appointments which are months and months or weeks and weeks of waiting, but THEN comes the acronyms for all the diagnostics. A STAT test is different from an ADOS, and a BASC is shoved in there too, and then the exact type of doctor must match the insurance provider’s stipulations for the steps to come. So needless to say, I am a mom who can state that I called 16 doctors in a set of two days and got nothing but answering machines. And I forge ahead. Logging my interactions, dating my calendar with the hope that this appointment or that waitlist doesn’t turn out to be a bust in some way of this journey.

To the families I have sat across from in these dozen years I’ve taught, I value your story as a family, now more than ever before. It’s just so insanely true that you really cannot understand the experience of another human until you have walked a mile in their shoes. And for some…that mile is going to be many years-long and many stones overturned. So like, are my shoes more like hiking boots, maybe a durable Chaco or a sturdy Keen sandal even, for this journey? Seems appropriate.

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