Light This Way: Musings on Autism 'Awareness'

It's April - the annual 30 days where we commemorate, celebrate, showcase, discuss, debate and generally spread "awareness" for things like Jazz (appreciation); Poetry; Confederate History (observed only in the Southern United States, according to the source - um, duh...and um, really?); Mathematics (curiously dubbed Awareness not Appreciation); and the obligatory list of disorders/differences/diseases and such, including Diabetes, Parkinson, Asperger's* and Autism.

Get "lit" for autism: A collaborative piece
by the bloggers of My Whac-A-Mole-Life; Pancakes Gone Awry
Yeah. Good Times.; Disability and Representation;
and, of course Edvard Munch.

On top of that, Autism gets its very own worldwide DAY: April 2nd. But surely you know that because anyone with a pen, keyboard, quill or cave wall has told us that already. And in the volatile blogosphere, boy did they! Take your pick. You've got your serious, snarky or poignant. Perhaps you prefer your awareness flavored indignant, sanctimonious, or rose-colored? There are posts ranging from curmudgeonly to cheerleader-y...and many combinations thereof. Are you pro-blue? Are you pointedly not? There's a blog post for you.

So where am I planting my flag today? The honest truth is, I don't know what to think.

We diagnosed my little girl very early, due to her pushy, uber-"aware" mom (ahem). Autism Speaks has a large presence in these parts, and it was the go-to resource. Their messages, videos ("No, I can't go for a bagel"**), and community spoke to me.

Then I became immersed in behavioral and educational endeavors. I read Jenny McCarthy's books. I fell in love with Holly Robinson Peete. My autism identity crises progressed to Floortime vs. ABA; sensory fulfillment vs. academic goals; the pros and cons of eating bark.

In more recent years, as autism in our home became not-at-all easier but more familiar, I expanded my circle and learned that (gasp) there are walking, talking adults out there with ASD. Possibly even living next door. Carly Fleischmann left us tearily hopeful. Yes! My child, no longer a baby, could and should have her own voice. Huzzah! And yet, she still doesn't really.

So when something as seemingly innocent as "Autism Awareness" turns into a maelstrom of blue-tinted noise, I don't know what to think. I want to be an advocate for all, but I'm just her mom. Her advocate. Her biggest fan. My own biggest critic.

So here's what I undeniably know:

• I love my daughter.
• Among countless other qualities, attributes, differences and labels, she is autistic.
• Many of the behaviors that qualify her as autistic can be pretty rough  - on her and those around her.
• Whether you are aware of autism; whether you accept autism...you will not want her sniffing your hair or picking your scabs when you meet her (especially if you too are autistic).
• I am sad that my child can't communicate, participate or engage in ways that are accepted and meaningful to others. She is sad about this too.
• We are human, and therefore we learn more about ourselves and each other every day. It's possible we are not always right. It's possible we are not always wrong. It's possible that we are both.
• Regardless of your opinion of my parenting or her potential, the following are critical to the autism community at large:
• Medical and insurance coverage (including for behavioral therapy)
• Caretaker respite and support; autistic individual support
• Accessible schools and environments that can accommodate sensory-driven behaviors, as well as academic pursuits and communication supports
• A world in which "quirky" behaviors and tendencies are not viewed as weird; where physical and social challenges are accepted and supported; and where we embrace differences of others year-round, in real-life. (For starters, how many people are quick to "like" that popular Facebook video of a disabled kid doing something cool BUT simultaneously shun the one doing cool things weekly on their son's soccer team?)

Do I want to "fix" my daughter? "Cure" her autism? I can't answer that here, because you don't know her. Or me. And the answer is complicated.

I love her unconditionally, and she makes me deliriously happy, angry, sad and inspired every single day. (Yeah yeah yeah, I know "all kids do that.")

So, autism schmautism ... she's my kid, and I want her to be happy and, as countless elementary school teachers say in their sleep, "meet her potential" - preferably with minimal Judgy McJudgerson diatribes and eye rolls from the masses. So if designating a day, a month, a year to that end makes a difference...I can live with that. (Although it would be a much better day if it included a nap.)

And if I've got it all wrong, I hope she'll tell me all about it one day. I'll gladly listen. In the meantime, check me off your list. I'm aware. Very. Very. Very. Aware.

*I wish our digital dictionaries and Autocorrect genies were AWARE of the words Asperger and Asperger's.
**From the Autism Speaks video Autism Every Day.

READ MORE AND SHARE YOUR OWN POSTS RIGHT HERE: Awareness Galore - An Open Collection of Autism Awareness Month Posts

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