Autism and Butts

So, it happened. We got the diagnosis. ASD-1, formerly/informally known as Asperger’s Syndrome.

I couldn’t sleep Monday evening. I was so tense about the upcoming appointment. Plus we had a whole dumping of snow that was threatening it from even happening. Thankfully the winds and roads cooperated enough and we made it. I didn’t know what to expect. I genuinely didn’t know if we were going to get the diagnosis. This doesn’t mean I doubted Navy’s autism - because I didn’t. The stress and worry was because I felt so sure, so 100% sure that I knew what it was, but so unsure that the doctor’s would (ever) see it.

But. She saw Navy. Truly saw her. We found the help. We landed in the office of somebody who saw the big picture. Who listened to our concerns, read the novel of notes I had compiled, and listened, really listened. Navy took the ADOS test, a standardized test that screens for certain ASD behaviors. And guess what? She “failed” it. Meaning, that test did not detect autism. But in other reports, paired with notes from her OT, her sensory profile, written assessments and our experiences with Navy on a grand scale, the psychologist was able to see the bigger picture. I’m grateful we landed in an office with a doctor who considered the whole of Navy, instead of simply turning us away because of one dumb test.

A friend recently reminded me that I don’t owe anybody our story, or experience. But I would have benefitted (and did benefit) tremendously from reading about people like us. Autism is gaining the nation’s attention, but girls are still widely under-diagnosed. Their behaviors manifest and show differently. And again, the data and standards (like the ADOS test is based on) are from years of studying and observing boys. Listen, I’m as open minded as can be on the subject matter of gender fluidity, but it’s not untrue that little boys and girls are socialized differently - from the very beginning. So for the point of this issue alone, the behavior of the differing genders absolutely plays a role in why so many young girls continue to go undiagnosed. I’m sharing this because Aspie girls are like unicorns. They’re hard to find. And I have one. I think exposing my unicorn could help others uncover their own. 

Autism is a broad spectrum of behaviors. Navy absolutely fits the broader profile; she socializes differently, has intense fixations, sensory issues, and is rigid in her expectations ... but she is very atypical. She is incredibly smart, and sharp. She’s bubbly. She can make great eye contact, and share joy. The psychologist warned me, “People will very likely doubt this diagnosis. They won’t see the behaviors. They’ll doubt the autism is present.” And you know what? They already have, and did, and do. She told me it was as if Navy had just crossed the threshold of the spectrum, or as my Father-In-Law says, she has “one foot over the line”. It’s enough to go unnoticed, but enough to wreak havoc on life. And really, that’s been the most frustrating part for us - trying to peel back the layers of silent suffering we’ve watched our girl experience. I don’t expect the world to see it, but it doesn’t make it less real.

I bet you all have a butthole. Good news for me, I won’t see it or experience it. But it’s there, right? Navy’s autism is like a butthole. (I was doubting this analogy until right this second.) It may come in handy from time to time, but damn, it’s a butthole. It’s not on display, but it exists. I don’t care for the world to acknowledge it (the austism, let’s move on from butts) because I was never after the validation. All we’ve ever chased was the help.

We start dyadic therapy next. I’m excited to learn more, as it’s a therapy we will experience together. I’m anxious/nervous/worried/thrilled/thankful to uncover new techniques to help the whole of my family’s life move a little more seamlessly.

I have a small network of Moms that I know that have children on the spectrum. They have experienced massively different obstacles and challenges, but their undertones and care is identical. They have reached out, soothed, and inspired me. They’ve given me pep talks, emotional hugs, encouragement, but most helpful: They’ve echoed the frustration, and raw feelings that my family has faced. They’ve showed me the nitty gritty, and I’m eternally grateful to hear their war stories. I think their transparency with me has continued to inspire me to be an open book - who knows who may be out there reading this and feeling validated from the similarities.

I expected to cry when I got the news. So many Moms had that experience, even when they expected it. I didn’t cry. I felt relieved. But, not the giant wave of relief I was expecting. I think a wave of relief hits you when you get good news. This wasn’t good news - it was anticipated news. And grateful as I was - I didn’t leave celebrating. I felt numb, and a bit overwhelmed. Johnny cried. My Mom cried. I just went back into Mom mode and hustled to get appointments set and change our educational course of action. (After talking to the psychologist we decided it would be better to give Navy another year in preschool, versus the “Young 5’s” program we had been pursuing. Young 5’s is like a trial kindergarten - it’s all day, 5 days a week, but doesn’t count academically. Kids with late birthdays - Navy’s is in August - as well as kids with developmental delays, etc are often in the mix. Navy was a strong candidate, but I think full time school would be have been a bit much for her. So another year of preschool it is!)

The wave of grief kind of hit me later in the day. And I’ve felt the mixed bag of emotions since then. I cannot deny the relief. I was heard. Navy was seen. But - it’s not like anything got fixed. And fixing it, isn’t really in the cards. Adjusting to it is - and that means work. Loads of work. And maintenance. I think the permanence and longevity of it all was really what shook me up. Knowing that my girl has a lifetime of battles ahead really roughed up my heart. But I can’t think of a stronger spirit to face these challenges head on ... Navy, as I’ve said many times, is a force!

I sincerely appreciated all of the support y’all have given me. Turns out, there are LOADS of Moms out there with battles just like my own. I didn’t know how many parents of ASD kids I knew, until I opened myself up. So many people have sent us well wishes, love, encouragement, and kindness. Thank you - it has helped float me through some of the harder moments for sure. From here, it’s just one step at a time. As they say, onward and upward. And because I like to wrap things up with a bow - please continue to cover up your butts.