Stop Keeping Score on Autism Awareness

To Whom It May Concern in the Media Industry: 

Today is World Autism Day.  Did you think I didn’t know that? So here you come, to do your part for Autism Awareness.  Do you think that by slapping that title on an article hearts will bleed, everyone will become aware, and you’ll change the world, all while tripling your overly analyzed stats? Am I supposed to smile and perhaps even tear up at your generosity for taking a day to recognize something WE ALL live with every day? Maybe I should share your article with my friends and family so I can spread and multiply your ignorance? Stop talking out of your ignorant bottom-line-driven Editorial Calendar and get real!

Who am I?

I’m the mother of five children. I’m a wife. I’m a daughter. I’m a sister. I’m a cousin.  I’m a niece.  I’m a friend. I’m a business woman. I’m a member of a community.  I am the mother of three children with Autism.  But, it’s not about me! And it’s REALLY not about you! That’s the problem.  You make these stories about you or some sweet victim of Autism, or the mom and dad burdened by the special needs of Autism and the mean public who misunderstands us. WHAT?! Why? I mean, just tell me WHY you would put it that way? In order for there to be awareness, you must build bridges and unity.  What you are doing is burning bridges and creating division, making it about Us against Them! Oh, just stop already! Would ya?

You’ve got it all wrong…

You are talking about the same things everyone else is talking about.  The same things we’ve been talking about.  Your insanity is keeping Awareness down! And we all know the definition of insanity.  It’s time you did something different! Doing the same thing each year is not raising awareness.  While I realize that the media is trend driven, you must stop using the most trendy nonsense to discuss Autism Awareness.  People already know that one in fewer and fewer kids have Autism, mostly boys, and it’s this awful thing that isn’t a disease. You’ve made it sound like Autism is one of two extremes; either Genius or a slight variation between dumb, dumber, and dumbest with little hope for a happy and productive future if we don’t COMBAT it and FIX it right now.  You focus on the people with Autism, their immediate families, and the people who are direct caregivers.  Sometimes you include the teachers. There’s more to the story! In fact,

I have a question…

Why wasn’t Jason McElwain ALREADY on that basketball team? CBS News reported that

“Senior Jason McElwain had been the manager of the varsity basketball team of Greece Athena High School in Rochester, N.Y.”

So no one had any idea this kid had skills?  If not, WHY NOT? If so, why wasn’t he already a PLAYER? Nowhere in the article can I find answers to these questions.  Didn’t anyone ever encourage him to shoot hoops during practice since he loved being a part of the team so much, even if it was as the “Manager?” This story was all about the Heroes of Autism, but it sounds like there were some Enemies of Autism along the way!   Everyone who ever shared in Jason’s life, lived with Autism, whether they were conscious of it or not.  Maybe if he had been put on the roster long ago, the story of the sweet boy given a chance and shocking the world because he was a bad-mamajama ball player WITH AUTISM, would have merely been the story of a boy who got a full ride scholarship to college because he played mad hoops! What if he had already been on the roster the entire time he was a Manager? What would the coach do differently in the future?

Hey, Jason, and Jason’s parents:

If you’re out there, I have some questions for you.  I’m talking about the real questions that should have been asked already, the stuff no one else is talking about! Couldn’t this be a valuable lesson for coaches everywhere? The story was made out to be about an amazing boy who was finally given a chance to take some jump shots and flew across the court instead! Awesome, but WHY hadn’t he been given the chance long ago?  This story sounds like it’s about INclusion, which we all know is a very hot Autism Awareness topic.  It sounds to me like this story is about a history of EXclusion, finally taking a turn for the better.  I’m not saying that someone did something wrong, but there is certainly more to the story.  There are important elements missing.  Without those elements, in all reporting about Autism Awareness, we continue to defeat the purpose.

The Media needs to Stop Keeping Score on  Autism Awareness, hoping only to one-up your media competitor with a better half-story for triple the impressions and site visits.

It wouldn’t be right of me to call you all out on the problem and not offer at least a few suggestions.  So here are some things you can talk about that WILL increase Autism Awareness:

  • Sometimes special needs parents are so concerned about their children’s “privacy rights” that we unintentionally put our children at risk, when people who should know their story don’t because that information is “private.”
  • There is a whole community of children without proper diagnosis because parents are afraid to label their children.  
  • Sometimes, navigating the politics of Autism is much more difficult for parents than simply raising their Autistic children without the support they are entitled to.
  • There is very little training offered to teachers who do not work in a special needs or inclusion classes.
  • As true when raising any child, parents must focus on, encourage, and nurture the strengths of their Autistic child.  
  • Friends and family often want to talk about it but are afraid to say the wrong thing.
  • Parents are afraid of saying the wrong thing too.
  • It is extremely awkward to have to intervene in a kiddie fight between your five-year-old Autistic son or daughter who understands less than your “typical” three-year-old niece or nephew about why their actions were wrong.  The three-year-old might understand that their own actions were wrong, but they are likely looking at you like a big not-fair-meanie-not-my-friend-anymore dummy because s/he got a time out while the other Autistic child got another heartfelt explanation with visuals about why their actions were wrong. This is not an easy concept for parents, much less children.  
  • Just because a child doesn’t like to make a lot of eye contact, is quiet, and REALLY likes certain things, doesn’t mean s/he is Autistic.
  • Many children with Autism have a really difficult time with transitions.  I’m not talking about the hard time most of us have with change.  I’m talking about those words-can’t-really-describe moments when you watch your child engage in self injurious behaviors like head banging, punching themselves, eyelid pulling, self biting, self kicking, because it’s time to go to school, and then time to come home from school, or time to change their clothes, or stop playing with a toy.  Those are moments parents just don’t always want to share.  They don’t want people to see those moments and judge them or their children.  But the parent sees something when the child is acting like their WHOLE WORLD is falling apart… in that child’s mind, the world IS falling apart.  And the parent’s heart aches.
  • Also from the CBS article referenced above, there was this very honest quote:

 “He’s a cool kid,” says guard Levar Goff. “You just get to know him, get used to being around him.”

That’s Real! Let’s talk about that.  

So, please, Media manipulators, start talking about the things no one is saying.  Build Autism Awareness by bringing people together, giving every voice a chance to be heard, especially the ones who aren’t talking about it at all.  Let’s find out why!

By:  Alicia Gonzalez