Every April I am reminded to adorn my house with blue lights, post infographics on social media and give to my “favorite charity”. I field well-meaning comments from family and friends letting me know they are thinking of me, and asking where they can donate in honor of my son. It’s “Autism Awareness Month.” And to be quite honest, it aggravates me. In my experience working with ASD families, I’ve learned I am not alone in my aggravation.

Before you stop reading, this is not going to be a rant about how others are too insensitive and autism is really really hard and no one understands my life, blah, blah, blah. Instead, what I’d like to do is briefly express my feelings about this occasion, to help you understand why many ASD families feel the way I do. Then I’ll direct you to some “best practices” for those of you who wish to truly honor our families.

 Is Autism a “Disorder”?

First, I say “families” because autism is a whole family disorder. And yes, I said it…“disorder”. I am not a believer that autism is simply a different way of thinking or a way our brains are evolving, or a diagnosis that’s been around forever but we just have better ways to identify it now. I have experienced it as a disorder in the truest sense of the word.

The Oxford dictionary defines the word “disorder as:

  1. “a state of confusion”

or

  1. “to disrupt the systematic functioning or neat arrangement of.”

 My Family’s Experience

When applying that definition to my household, that is a drastic understatement.

For my family, it has been a game-changer. It encompasses everything about our daily life. Let me say that again…EV-REE-THING. From what we eat, to how we decorate (or not) our home, to how many days a week I can work, to how we sleep (or don’t), to when I go grocery shopping, to how I spend my free time (Did you say free time? What’s that?).

It dictates when and if I can drive my daughter to her friend’s house, and whether or not that friend can come spend the night. It determines where we spend our money, and which bills can be paid late because we opted to spend “extra” on a new not-covered-by-medical-insurance therapy, medication or autism conference. All of these things have been influenced- or dare I say determined- by autism in our household.

Autism Regression Nightmare

My son, Ben, who is now 17 was diagnosed with Autism at age 3 ½ after the disorder slowly took over his entire system, stealing milestones one by one, like apples being plucked off a tree before they’ve had a chance to ripen.

Speaking in 2-3 word sentences…pluck!

Waving bye-bye….pluck!

Eating a variety of foods…pluck!

Making eye contact and sleeping through the night…pluck, pluck!!

Gone. All gone.

These milestones were replaced with autoimmune symptoms such as chronic constipation, food allergies, skin rashes, screaming, night terrors, unexplained fevers, dark circles under the eyes, tummy aches, head aches, and an inability to self- soothe.

Stuff that wasn’t covered in the parenting manual.

I think you get the picture.

Shifting From Awareness to Support

So perhaps that’s why devoting a month to “autism awareness” angers me a bit. We are all too “aware”, as is everyone who knows us.

I’ve made peace with the disorder. I’ve accepted that it is part of our lives and that my son is more than the disorder and all that good stuff. But I think the part that bugs me is that the month of April has become an opportunity for national autism organizations to pad their bank accounts. Autism walks, autism ribbons, autism t-shirts, autism bumper stickers…

I feel like little like Kramer in that Seinfeld episode where he refuses to wear “the ribbon” and gets chastised severely for it.

“Why will you not wear dee ribbon?! Everyone is wearing dee ribbon!”

Now you may be asking,

“But, isn’t it important for these organizations to raise as much money as possible so we can stop the epidemic?”

Yes and no.

Maybe that’s a topic for another whole blog series. So hold off for a moment on lighting up your blue lights. Today, I want to make you aware of what autism families need.

What they REALLY need…is not awareness…not for you to understand them better…or even empathize.

They need support.

So what does that look like?

I’m so glad you asked…

Go to Part 2