My daughter will be tested for Asperger’s Syndrome soon and I’m unsure of my emotions. Except guilt. I feel guilty for not recognizing it sooner, for being so hard on her growing up, and I wonder if it has anything to do with my genes. Or if we’re both just a couple of introverted outskirters.
She was always odd and somewhat impolite and just… some kids make animal noises in response to questions and talk to themselves a lot, right?
We knew something wasn’t clicking early on. In second grade, the school system put her through a series of tests for just about everything and came up empty. No ADHD, dyslexia, or road rage or whatever else they tested for. Autism wasn’t on anyone’s radar then. The idea that she might have Asperger’s didn’t come up until several months ago. She’s eighteen now.
As most people are now aware, Asperger’s Syndrome is a high functioning form of autism. Each person is different, but most have problems with personal interactions. Without using the this-came-from-a-website-pamphlet verbiage, it breaks down to my daughter doesn’t adhere to the socially acceptable behavior norms.
And that bothers the muggles.
I want her to be able to fit in like I’ve (mostly) learned to do. And, yet… that bothers me too. Why should either of us have to fit in anywhere? We’re both nice people, just not necessarily friendly. We find most social interaction overwhelming. Or annoying. Often confusing. And completely unnecessary.
After a sentence or two with strangers she begins to shut down. Although, admittedly it’s difficult to gauge since everything with teenagers is “fine” or “good”. Anything is an improvement over animal sounds or completely ignoring people or grunting.
She gets visibly nervous if someone stands too close or brushes her as they pass. She shared a few months ago that someone touching her back causes her physical pain.
And, may your Gods help you if you try to hug either one of us without any advance “hey, I’m coming in” warning. I’ll cringe and possibly make a snide comment. She’ll probably cut you. Jokes aside, my daughter was carrying scissors around in her jacket pocket for a while, so cutting may have actually happened. There may be a very bubbly cheerleader type walking around with uneven bangs.
It still took several months to decide whether she should undergo the testing. I worried about the stigma. Then there’s the opposite worry – what if she doesn’t have Asperger’s? What if she’s just labelled weird or rude for the rest of her life and she’s on her own with no supportive community.
I also struggle with either one of us having to conform to the social norms in the first place. Or maybe it’s how the word normal is just thrown around. I’ve seen what’s considered normal. Those people are not always sunshine and rainbows. I sometimes read internet comments.
Whatever the root cause, it’s an unfortunate fact that we all need to learn to muddle our way through basic communication, so I’ve been working with her for while on the primary social skills, namely:
1) Look people in the eyes or they’ll think you’re a lying sociopath, which is weird of THEM.
2) Speak when spoken to even if the statement or question is incredibly stupid.
3) The ridiculous necessity of small talk (Hint: You can always default to the weather).
I know there’s a large community out there if she is diagnosed, but right now it feels lonely in this in between place. I was reminded last week by a couple of strangers that parenting is hard, there are no certainties, but we’re never alone.
We were waiting our turn for my daughter’s haircut and a woman walked in with a girl of around eleven, I assumed her daughter. They checked in and sat down near us. The daughter folded her arms and started swinging her feet, dragging the front of her flip flops over each time so that they actually did a sort of flip before smacking back into her feet with a flop.
Her mom leaned over and I anticipated a scolding to end of the foot dragging, but instead she quietly said, “Now remember – speak up and answer the woman nicely if she asks you a question.”
I glanced up from my phone. The assault on the carpet halted mid flip, shoes sticking up straight in the air. The girl looked over at the hairdressers busily cutting and chatting up customers.
Her mother looked down at her with the kind of look that required a response. The girl shook her head slowly as if she had just been told her kitten had died. Then she nodded slightly in reluctant acknowledgement. She twisted her shorts with both hands nervously and let her shoes fall back into place.
The mom opened a magazine and offered a semi-genuine smile in my direction, “Can you believe how hot it is this week?”
I could’ve jumped up and hugged them both.
But, that would have been me invading their space. And, yeah, I know how THAT feels. So, I just agreed that it was wicked hot instead before the mom disappeared into page flipping.
I air elbow nudged my daughter. She promptly jerked away as if I had actually plowed in to her arm and gave me the hell-fire gaze that indicated I should know better.
I asked “Did you hear that?” with a silent head nod and sideways glance instead of words.
She replied with a “What are you talking about now?” brow crinkle followed by a “I was happily in my own little world” eye roll.
I frowned in disappointment and raised one eyebrow, which all mothers use as the universal expression for “Don’t start with me”, before returning to my phone.
While we’re working on replacing facial contortion with voice activated communication, it was good to know we’re not alone.
I suppose I could’ve started a “me too” conversation with the mom and I almost did, but that would’ve been very social of me. Plus, it could’ve embarrassed our daughters or angered a stranger who thought her kid was just slightly immature and introverted – and maybe she is.
But, mostly I’m just not that social.
I silently thanked them instead. For being socially awkward, yet managing to make it through mundane conversations and social interactions. For existing.
Even if we never speak to one another.
As someone who found out that they had AS, when they were 40, i had to go back and look at a lot of things and re-see my life though different eyes. It doesnt pay to be hard on yourself, because that does not fix or change anything.
Whatever the diagnosis, it won’t change anything about the wonderful person your daughter is. She will be the same person before and after the diagnosis. The diagnosis makes it possible to get treatment. Also, another thing to look into — which probably wasn’t on anyone’s radar when she was little — is sensory integration problems. It sounds like she has some tactile defensiveness. That can go along with asperger’s/autism or stand on its own. It can cause some social awkwardness as well. That would be diagnosed by an OT. I’m not sure what therapy they might offer to someone that age … but it was very effective when we did it when my daughter was 4.