April is Autism Awareness Month … Let’s Get This Party Started

Permission to use image.

LOOK! Up in the sky! It’s a bird! It’s a plane! It’s Autism Awareness month when every mother of an ASD kid on the face of the planet with a Facebook account inundates her news feed with autism memes, cute autism t-shirt fundraisers, the color blue, puzzle pieces, autism jewelry, links to confessional mommy/daddy blog posts updating their family, friends and all of social media about their child’s latest accomplishment or very bad day; we are a “tell all” society with a no holds barred glee for sharing our intimate family stories about Life With Autism, stories that become videos of 10 year old “Johnny” who spent the day in a diaper because he’s not yet toilet-trained and is on his third meltdown of the morning … which his parent couldn’t wait to upload to her news feed for God knows what reason she convinced herself was well-meaning because you know she didn’t once stop to consider her child’s right to privacy because hadn’t she just watched a video of someone else’s autistic child (excuse me, “child with autism”), having a worse meltdown than hers so it must be “let’s upload autism videos on Facebook day,” because everyone else did and that makes it okay for her to do it too.

Except it’s not.

Look! Up in the sky! It’s a bird. It’s a plane. It’s Autism Awareness Month for 2016 where images, stories and statistics about autism crowd out all other Facebook noise and we’re no closer to any kind of agreement about what all of this means.

Picture a memorial candle casting a shadow on columns of grey letters: names of dead children in top-to-bottom rows against a black background. At the top of this image in white script font is the phrase “April 1st Day of Remembrance.” Along the bottom of the photo these words: “For the Autistic Children Who Lost Their Lives After Wandering.”

“April is Autism Awareness Month And We’re Not Fooling Around.” Here’s the catchy headline for a blog post from a company that provides human services software for home care and human service provider agencies across the country. Pulling statistics from the Center for Disease Control 2014 (CDC 2014) and similar online sites to call attention to the seriousness of autism spectrum disorder, they wish everyone a “Happy April.” (medisked)

Take a nose dive into one of the never-ending topics that finds it way into millions of autism conversations playing over and over again in a wheel of infinite suggestion and possibilities. Read Nicholette Zeliadt’s essay in the April 1, 2016 online issue of The Atlantic: Where the Vocabulary of Autism is Failing -Terms Like “low functioning” are short on nuance and long on stigma.

Welcome to my world.

From our Facebook friends at Asperger’s Support Network on this first day of Autism Awareness month (April 2016):

:) APRIL IS AUTISM AWARENESS AND ACCEPTANCE MONTH
Give us a LIKE if you see this in your Facebook News feed.
What are you doing to help raise awareness and acceptance this month? :)

“Acceptance.” How did that word get in there?

This year, that word appeared in some of the Facebook shares that filtered through my news feed before things got crazy. The Thinking Person’s Guide to Autism (TPGA) got things started by sharing a blog post written by Shannon Des Roches Rosa: Forget Awareness. Let’s Make it Autism Acceptance Day.

Rosa writes: “Why acceptance? Because autistic people like my teenage son Leo deserve the love and respect that come with acceptance, not merely acknowledgment that autism exists. Awareness is passive. Acceptance is a choice.”

Over on the Autism Women’s Network’s Facebook page, is a history lesson of previous Autism Awareness campaigns shared in Nona Mova’s post: Autism Doesn’t Make Me Blue: How to Support Autistic People This Month .

For years, the autism conversation was dictated by neurotypical folks who experienced autism through their second-hand lenses: parents, grandparents, pediatricians, siblings, aunts, uncles, teachers; all of them screaming for that dang-blasted ‘cure.’ “We’ve got to do research so that we can find out what causes autism so that we can FIX it!” became the rousing battle cry that can be traced back to 2005 when an organization called Autism Speaks was founded by former NBC chief executive Bob Wright * and his wife Suzanne as a means to help their grandchild. With a $25 million donation from a family friend, they were off to the races, becoming the “world’s leading autism science and advocacy organization,” while managing to piss off a lot of people along the way: parents, grandparents, siblings, aunts, uncles, teachers and, most importantly, people on the autism spectrum/autistic people, who fiercely insisted that autism was/is NOT a disease; who questioned how an organization that failed to include autistic individuals in
leadership roles could honestly reflect the real concerns of individuals on the
autism spectrum, so that, not surprisingly, the 2015 April is Autism Awareness Month was a huge backlash against Autism Speaks with images, stories, blog posts and more urging everyone to boycott Autism Speaks, starting with that infamous blue light that became the visual representation for the vast numbers of boys diagnosed with autism which is always a sobering statistic and continues to prompt more discussion among disability experts.

Today, Autism Spectrum Disorder (ASD) is about 4.5 times more common among boys (1 in 42) than among girls (1 in 189) and is also the fastest growing developmental disability. Some of us already know this but, if this is the first time you’re hearing autism, autism spectrum disorder (go back and rearrange the word order and capitalize letters to your heart’s content), click on all the links and catch up to the rest of us!

Speaking of those 1 in 189 girls, where are their grown up peers and what are they up to? (Gentle reminder that you’ve already met Nona Mova. Come meet a few more.)

This excerpt pulled from The Girl With the Curly Hair’s Facebook page as part of her 2016 “Today (4/1/16) is Autism Awareness day” message:

“ … understand being sensory overwhelmed is like having ten thousand pieces of glass broken inside your head, and every sensory input adds to that making your head feel like it’s going to explode, bleeding on the inside.
 If you know someone on the spectrum, rather than letting them know what you think is good advice, please ask how they experience things and why it is so difficult for them. That will get you a lot further. (this status can apply to everyone with autism, and not just adults of course) *Nele

Cynthia Kim, a freelance writer of both fiction and non, received a diagnosis of autism in adulthood. Read her book, Nerdy, Shy, And Socially Inappropriate A User’s Guide To An Asperger Life . (Down boy, there are NO affiliate links in this essay.)

As she writes in the introduction:

What I’ve written … is what the experience of being — and of becoming — autistic has meant for me. There has been much to discover — about autism and about disability, about compassion and community and self. I have spent hundreds of hours reading and researching, measuring theory and practice against my own experience. It’s not an exaggeration to say that “all things autism” has become my new special interest.

The process of writing this book, of unpacking the hard and sad and joyful aspects of my life in the context of Asperger’s, has changed me more than any other experience in my life. (pg 19)

I haven’t checked but, I don’t think she’s on Facebook. However, not only is Judy Endow on Facebook, she’s been blogging for quite a while at Aspects of Autism Translated, writing books and generally making the world a better place for us all. And she always has something to say!

As you continue to explore “all things autism” on your own, expect to find articles, blog posts, essays and statistics on disability inclusion in the workplace as it relates to adults on the autism spectrum. Because a lot of those autistic kids grew up and they’re out there: looking for work, going on job interviews, getting hired, promoted, and/or fired … just like everybody else. Some of the kinds of conversations taking place in this arena use words and phrases like: disclosure, disability inclusion, accommodations, the Americans With Disabilities Act, equal opportunity employers and, celebratory nondiscrimination statements like this one: “ XYZ company does not discriminate. XYZ promotes and values diversity within its workforce and provides equal opportunity to all qualified individuals regardless of race, color, creed, age, marital status, sex, gender, religion, sexual orientation, gender identity, gender expression, national origin, veteran status, or disability.”

Savvy advocates like myself, scour the internet for companies that include diversity statements, hoping that businesses and organizations wholeheartedly embrace this mindset. We know that meaningful employment for everyone benefits from the ambitious recognition that diversity in the workplace offers substantial ROI to employers and blissful satisfaction for us all.

And bliss is a wonderful thing, isn’t it?

We’ve come a long way. Think back to the year 2005 when an autism diagnosis was the scariest thing in the world because pediatricians were clueless and couldn’t tell parents where to go for follow-up, insurance coverage was a pipe dream and, if you were the parent of a child newly diagnosed with autism, you stepped into a bottomless nothing. I don’t have a crystal ball but, I have noticed that disability change seems to happen on a large scale every 10–12 years which is the time span from kindergarten-12th grade. Hopefully, in the years ahead, we can work faster than that to create more than awareness and acceptance.

What could be more than that?

A picture is sometimes worth a thousand words and so, I’ll end as I began, with an image and a few choice words. Someone who always seems to be one step ahead of the rest of us and who demonstrated that admirable quality early on this month, is the consummate gentleman, M Keller (Invisible Strings) who created and shared this compelling image on his Facebook page:

Created by M Keller of Invisible Strings & published w/permission.

In a world that is constantly spinning out new stories as it rushes to keep up with new developments, family stories, opinions and all of the messy and joyful insights into what autism is and means to so many of us, isn’t this what we should be celebrating?

If you read til the end, thank you for that. If you want to keep up with my advocacy work, joining my subscriber list gives you early-bird updates. Even better, if you’ve liked what you’ve read, please share it with your peeps!