Tag: Autism Acceptance

Autism  Acceptance Month

Autism Acceptance Month

What do a lightbulb, a puzzle piece, and the color blue have in common?  Well, nothing actually, unless you’re talking about a potent marketing campaign by an organization who markets autism (Autism Speaks) much in the same way that another organization markets breast cancer (Susan G. Komen Foundation).

It’s March and we’ve made it through another winter full of snow days and illnesses and have come to (almost) spring weather relatively unscathed.
With this warmer weather brings an annual event which makes my eyelid twitch: Autism Awareness Month.

Now, don’t get me wrong- I get the need to raise awareness. Which leads me back to the lightbulb, the puzzle piece, and the color blue.  While the marketing is strong, has anyone actually learned anything from the Light It Up Blue campaign, the puzzle piece merchandise, the fundraiser walks?  Has anyone not already up to their elbows in autism actually walked away with a better understanding when April slips away and May is in full swing?

I’m going to say NO.  Because several years ago, I was among the population of people who knew nothing of autism.  Because I knew that people got blue light bulbs and wore their puzzle piece pins, but I had no clue what any of that meant. Because I still talk to families new to the diagnosis who feel lost.  And because the organization behind that movement really wasn’t trying to raise awareness- they were (and still are) trying to raise money.
Why are their chosen symbols a problem?

  • The color blue was chosen because the AS founders had an autistic grandson.  They literally chose the color because he’s a boy.  That’s the only significance.  There is a massive difficulty in obtaining diagnoses for girls and women because the diagnostic criteria only considered this to be something found in boys.  Autism looks different in girls and women, and this “blue washing” has basically ignored the girls who are fighting for the diagnosis that will help them obtain supports.
  • The puzzle piece has left the autistic community feeling as though they are looked at as having pieces missing.  This is never okay.
  • I don’t know about the light bulb, other than it was just a clever piece of marketing at the time.

Now, sure, they’ve reworded their mission statement to sound less inflammatory.  They’re under new leadership and they’ve even added two autistic people to their Board of Directors.  Two.  People.  But when you dig a little deeper, and I did, you find that their mission really hasn’t changed.  They state in their “For The Record” page (I’m not linking here- you can go find it but I don’t want to send people from my page to theirs) that because science tells us that there is no single “autism” that there is surely no single cure. Yes, they actually state this:

Screen Shot 2018-03-04 at 11.43.30 AM
I can’t help but notice that statement- there will be no single cure.

So, here is a short list of autism facts and information, to help with understanding/awareness:

  • Autism is a neurological processing method, not a disease (ergo, no “cure”)
  • The social “difficulties” that go hand in hand with autism are often a matter of neurotypical people not understanding the many ways in which we communicate (why we need understanding and acceptance)
  • Sometimes, behavioral issues come about when people are not provided with all of the information they need or the communication tools they need. This can be solved with the help of teachers, parents, therapists, and friends!

Now, did you need a blue lightbulb profile pic frame for that?  Would that photo frame on your Facebook profile have done anything to help anyone else become aware?  No.

And frankly, when the autistic community continues to very clearly say “AS is damaging and doesn’t speak for me!”, you really ought to listen.

SO.  What now? What organizations can and should we support to further autism acceptance and flip the script from [damaging and evil] to [a world of interests, a strong love for friends and family, and an uncanny ability to be open and honest]?

My top pick is Autistic Self Advocacy Network (ASAN, for short).

I want you to watch this video, if you please:

ASAN works to dispel the myths, present the facts, and to help people move out of “awareness” and into #autismacceptance.

I’ll continue the “who to support” conversation in April,  but I really needed to get this off my chest.

In April, and every month, I ask you to join me in moving the narrative in this direction.  Do you know someone who doesn’t know anything about autism?  Help them to learn, understand, and accept the members in their community who are autistic! Get to know the facts, and not the hype.  Understand that this is not a travesty, this is not an epidemic, this is a neurological functioning and neurodiversity (the many different types of ways people process the world around them) is a beautiful thing.

A widely accepted symbol for the neurodiversity movement- an infinity symbol with a spectrum of color.
Talking to your children about their autism

Talking to your children about their autism

I’ve had several people ask me about telling kids about their diagnosis.  I’ll admit, I may not be the right person to ask.  I’m so totally matter-of-fact about things, that in our house it goes something like this:

“So, little dude, you’re autistic.”

“What’s artistic?”

“A-u-t-i-s-t-i-c.  Autistic.  It means that your brain takes in a LOT of information and processes it (like a computer does).  This is true for everyone, but your brain goes about it a little differently.  It also means you might have difficulty with things that are too loud or too bright or involve too many people. And it also means that you may learn a LOT about one particular subject and then teach us all about it.  Cool, eh?”

It’s safe to say he has my sense of humor

The other day, Speedy was reading the back of my wine glass that we received from David’s Refuge during a respite weekend.  “Children with special needs aren’t sent to special parents, they make parents special.” He looked quizzically at me.  “Do you know what it means when they say ‘children with special needs’?” He shakes his head no.  Then he stops and smiles.  “Is it because of my autism?” “Bingo, kid.  You got that right.”_MG_7929

So here’s my thought on, well, pretty much everything.  Kids pick up EVERYTHING.  They hear and see all of it, especially when we think they can’t or don’t.  When kids hear the adults in their life talking about their strengths and their abilities, and talking matter-of-factly about the benefits of being autistic, they have a more positive view of themselves than the kids who grow up hearing only about the deficits, the struggle, the “I wish he was never born this way” moments.  Don’t get me wrong- we do have the struggles.  We do have the nights when I dissolve into a weepy puddle in my husband’s arms- or vice versa- because we just had never signed on for how much work this would be.  We do have to have deficit-based conversations at times (when our children are not in the building) because some access to services requires that conversation take place.  I end most of our family dinners with my head in my hands.

I don’t want our readers to think I’m all sunshine and roses.  No, lovies.  I’m coffee and wine.  I’m fried cheese and beer.  I’m hanging on to the edge of a cliff by my chewed fingernails.  I move through emotions so fast it would make your head spin, a fact which has often confused my acquaintances.  But it’s all Coping Strategy 101.  There is no manual for my children, which is why I write- so that you may have something to go by.  A weird combination of Instructional Manual, Coffee Table Book, Bathroom Reader and Comic Strip.

I recently attended a conference where the presenter said “If you’re considering writing a book, don’t.”

I’m not letting that dissuade me.