Making Sense of An Autism Diagnosis

In February we received some news that we had been waiting on for six long months: Ez is on the Autism spectrum. In some ways it was a complete shock to us, and in other ways we knew on some level for awhile, if that makes any sense. I knew that he displayed sensory issues and had several meltdowns in extremely loud environments. I knew that his speech was behind the curve. But it wasn't until he started preschool last September and his teachers brought their concerns to us that all the signs of autism really started falling into place. We started the process of getting him assessed, a process that took way longer than we thought it would, and involved three separate appointments, one that was mostly me talking with the doctor and getting what felt like hundreds of pages of questionnaires and forms to fill out, the second was the actual assessment, and the third was when we got the news. 

The time between that first appointment and the second (about a month and a half) was the roughest part of this journey for me. I tend to exaggerate because numbers aren't really my thing, so they either fall into the category of "a lot" "average" or "not a lot". I'm telling you right now that I'm not exaggerating when I say that one of the forms I had to fill out asked me no less than SIX times if my kid was weird. 

Is your son/daughter weird?

And then, I guess, in case I didn't know what that question meant, they followed up with:

Do his peers find him weird?

Does his teacher find him weird?

Does he react oddly in certain situations?

Has anyone ever called him weird?

And, the kicker:

Do YOU find him weird?

Let's just say I had a lot of sleepless nights over those stupid questions. At first it was a visceral protective "if you call my kid weird one more time I'm gonna punch you in the face" parental reaction. (And I swear, I'm not a normally violent person. At all.)

Once I got mostly over my anger at the wording, I started dwelling on another troubling facet of an autism diagnosis - doctors don't understand this disorder enough to even nail down the symptoms properly. "Weird" is not a symptom, yet there it is, being used as a tool to diagnose autism. Being diagnosed with something that doctors don't completely understand adds a whole new level of anxiety to the process, and unfortunately it's one that, for the time being at least, we'll have to learn to live with. I'm comforted by all the strides that have been made in understanding autism in the last few decades, and I'm hopeful that even more knowledge will present itself in the near future, but for the moment we've had to learn to sit with the anxiety of not knowing. Not knowing if the treatments they recommend today will still be considered the best treatments a few years from now. Not knowing the cause or even exactly what the differences are in how his brain is processing information. Not knowing things is not one of my strong suits. In the age of Google, it seems like I can get answers for most things in a matter of seconds, but this is not one of those things, and it has been hard to process that.

I want to stop for a moment at this point just to say loud and clear, I am not at all saying autistic kids are weird and those assessment form questions are NOT my own words. I don't even think being weird is bad. However, when you start hearing it in relation to your kid it makes all the mama bear protective instincts go on high alert.

So that was my thinking from about late September until past Christmas, and then (sorry, I know this is long, but you're getting months and months worth of thoughts compacted into one lengthy post) I switched gears to thinking, so what if he is weird. Every person I know on an intimate level is weird. People in general are basically weirdos. Myself included.

Every recent Disney movie touts weirdness. Follow your own path. Be yourself. Your differences are your strengths. And that stuff is so easy to get behind until you have teachers saying to you, (in nicer words), your kid's weirdness is a problem. 

These past few months are when it really started to hit me about what makes parenting so tough. When they're babies it feels like the no sleep and keeping them alive thing is tough, and then they turn into toddlers and you realize just how easy you had it with a newborn, and then you start getting into the emotional stuff and the decisions that will impact them for the rest of their life and realize THIS is the hard stuff. 

Now we're navigating that path of finding a very fine balance between staying true to Ez and his "weirdness" while also giving him all the tools he needs to thrive in school and beyond. For us at the moment, that means lots of assessments through Ez's new ABA therapy, the school district, an occupational therapist, and then we move forward with new plans and schedules to help him in the areas he needs help. This is still a very new process for us, and there's so much we're learning on a very tight curve, but, through it all, Ez continues to impress me with his resilience. Even when he's declining to answer questions an hour into the assessment, I'm impressed that he's using full sentences to do so ("I don't want to answer that question" or "I already answered that" 😂). We're learning to celebrate the little victories along the way. 

The thing that helped me get past all those questions was realizing and really focusing on the fact that calling Ez autistic doesn't change a thing. He has always been, and will continue to be, our Ez. Autism is not a label that can sum up Ez as a whole, nor any other person who has been diagnosed as autistic. Those questions on those forms don't sum him up. They take all his worst qualities and ask them repetitively, but they left out all the best stuff. 

I read a quote that sums it up well: 

"If you've met one autistic person, you've met one autistic person." 

All autistic people are unique, all people are unique. 

So, just to balance things out, here's a little note for you, Ez, so you can always remember some of your best traits that you won't find on any standardized forms:

You are the most stubbornly determined boy I've ever met (aside from your father), and also the snuggliest and most loving. You're so empathetic and in tune to people's emotions and will always try to make someone feel better if they're upset. You work so hard to learn new tasks, and you always succeed. You love to sing and dance, you show unprompted gratitude, and you are one of the most festive people I've ever met (tied with me and Gangy). You've come so far this year, in language, potty training, going to school (and spending time without any family members around for the first time ever), being a big brother, and learning so many new things. It really is astounding how much you've grown in a short year, and I'm so impressed with how well you've handled so many big changes. And, most of all, you're brave. You do hard things even when they scare you, and that makes me (and your daddy) so, SO proud of you. 

And a note to you, Decky, (who hasn't gotten much mention here, but will also be assessed this year), 

You are an uncontainable ball of energy, yet you also have a tremendous amount of focus. You will sit there and examine something and take it apart and put it back together until you get how it works. You don't have a ton of words in your vocabulary (not English ones, anyway), but you're still one of the most communicative people I know. Your daddy and I joke that if the four of us were ever stranded in the wilderness, we'd have to rely on you for survival. When you want something, you find a way to get it, and often that involves scaling furniture. You give the sweetest out of nowhere kisses. You don't know the meaning of fear. Your unbridled joy at the sight of balloons or bubbles is one of the greatest joys to witness. The sound of your giggles is one of the most infectious sounds in the world. You make your daddy and I so, SO proud.

A little note on this post, which has been sitting in my drafts folder since one sleepless night, months ago, when I was struggling to make sense of all the thoughts and emotions swirling around in my head: - I almost didn't post this. Part of me feels that this is Ez's (and possibly Declan's) story to tell and it's a big thing to share online. But, one of the things that has helped me is reading other family's and individual's accounts of living with autism. Every journey is unique but it is still helpful to see that others have successfully navigated these roads before. So, after months of sitting in my drafts folder, I decided to send this post out into the light of day and maybe one day someone else feeling these similar emotions will read it and know they're not alone.