I’ve written about nearly every topic under the sun on this blog. Light stuff. Heavy stuff. In-between stuff. But there’s one thing I haven’t written about. (I have on this blog’s Facebook Page, but not as an actual blog post.) And that is my 8-year-old daughter’s autism. I used to say her “autism diagnosis,” but that’s just a blip on our journey. Yes, the actual diagnostic process is fascinating, sometimes confusing or frustrating, but ultimately, it’s a phone call from a behavioral health specialist who confirms what you’ve known since your child was an infant. They’re different.
And it’s not like I’m scared to tackle tough subjects. I’ve written about my brother’s suicide, sexual abuse, my father’s death…big, hard-hitting things. But this autism thing? Folks, I’m exhausted. And sometimes the daily madness in our household must sound so strange from the outside, that I don’t have the energy to make. you. understand. And frankly? If people aren’t “aware” of autism by now? It’s not my obligation to teach them. It’s my obligation to teach my daughter how to work with her own unique mind to become the most healthy and kind human being she possibly can be. I didn’t say happy. I didn’t say successful. Will she be those things? Yes. But she’ll achieve those on her own. After the healthy part.
For a little backstory, here’s what I wrote last year on the FB page:
- At 9 months she began rocking on all fours in her crib and chanting repetitively to calm herself back to sleep.
- At 12 months she began head banging while in her car seat or sitting up on the couch.
- At 18 months she was speaking in full sentences, almost paragraphs.
- At 2, she would empty the bathroom cabinets and organize all items in groups by brand logo.
- At 2.5 her meltdowns became so severe I would cry myself to sleep at night not knowing how to help her.
– Then there’s the toe walking, the excessive (super excessive) talking, the strange obsessions and collections, the extreme anxieties…
I could go on, but it’s a bit exhausting. We knew. I knew. Her beautiful, intelligent, wildly creative brain was different. And it was. It is. Awhile back, our oldest daughter was officially diagnosed with mild/high-functioning autism, once called Asperger’s. She’s excelling in school, and we’re very optimistic about what her future holds. I’m talking about this now because girls with autism are vastly under-diagnosed, and the consequences are potentially dangerous especially when hormones hit during the pre-teen years.
Okay, okay. That was my reminder that maybe I *do* have an obligation to talk about this. Because sadly, MANY girls on the autism spectrum go undiagnosed. And the only way parents become aware to even consider the possibility that their daughter has autism is by other parents and autistic persons themselves to share their journeys. (And yes, around here we use autistic/has autism interchangeably, because I see it both ways, and goshdarnit, word policiing before considering intention is just not helpful.) I have SO much to catch up on. So many stories and posts I could write, and I probably should, because a lot of it would be helpful. We’ve got a great toolkit of resources, including therapy, medication, in-school assistance, and continual adjustments at home. She’s got this. We’ve got this. But sometimes…
I’m happy to say my daughter is still excelling in school academically, but socially is where the poop could hit the fan. Why the word poop? Because my daughter is obsessed with all things bathroom humor related. And yes, it’s not unusual for elementary kids to giggle at any mention of a backend bodily function, but combined with her hyper-verbal stimming, impulse control issues, and alternative awareness of social norms, this has been causing some issues lately.
Sadly, my daughter recently defaced a dear friends project with an unsavory word, and when I was told about it, my heart sank. Both because she had hurt a very good friend, and because I knew, I just **knew** this was going to happen. We’ve gotten a great handle on her anxiety, which means that behaviors she may have let boil and simmer inside are now coming to the surface. Most of the time, they’re harmless, but it means she’ll seem more and more immature and strange compared to her neurotypical peers.
But this? This was not okay.
“I didn’t know I did it. I didn’t know. I didn’t know…..I couldn’t help it!”
I could feel the pressure in the car rising as I sternly addressed her. She was extremely uncomfortable, but I just let her sit with that. I had expected her to say she thought her friend would find it funny, as this particular friend engages in silly banter with her regularly. But she didn’t. I could tell her confusion about her own actions was genuine.
“You HURT your friend. Okay? You made her cry. She worked hard on that and you ruined it. You need to apologize to her. And yes, you CAN help it. You can. You’re the only one in control of you. You’ll need some different coping strategies, but you CAN help it.”
She sat and stared at her hands. She was frozen. And I can remember feeling that way as a child. Ashamed. Remorseful.
“How do you feel? Do you feel bad about yourself?”
She shook her head yes.
“Honey, you’re not a bad person. At all. You’re a very sweet kid. But you made a bad decision. And this feeling you have? It’s called remorse. And it’s a good thing to feel. It means you know right from wrong, and you need to listen to your body when you feel this way so you don’t do the same thing again.”
For us, being “aware” of autism means being aware of how it affects someone’s every move and decision, because it’s something they can’t escape. Sure, we have strategies that help her be successful, but her mind is still autistic. She has her own unique “stims” or things that soothe her, and one of those things is words. That’s the hyper-verbal part. She needs to be either consuming or producing words all. the. time. And if a particular word or thought gets stuck in her head? It’s going to come out. Over, and over, and over. And sometimes, that’s hurtful to someone else.
So there it is. My first official post about our autism journey on this blog. Hopefully, I’ll have the energy to write more, because I’m eternally grateful to other people in the autism community whose stories have helped me. Like Diary of a Mom. And remember, if you’ve met one person with autism, you’ve met one person with autism. Each mind is unique.