Monday, December 19, 2011

El Qué Dirán or What They Will Say (about Autism)

Even though I grew up in a bilingual home, I was raised speaking English only.  So Spanish became a way to keep me out of adult conversation.  And when the conversation lapsed into Spanish it usually meant: 

(A) I was in trouble;
(B) My mother was pissed;
(C) There was some serious bochinche; or
(D) All of the above   

At a young age I realized it would be in my best interest to understand key words and phrases.  "El Qué Dirán" being one of them.  The El Qué Dirán were whispers among women, rarely were the words said to your face.     

For those unfamiliar with El Qué Dirán, Urban Dictionary* defines it as: 
The unspoken belief in Latin-American culture that every person’s actions in society are subject to the scrutiny and criticism of every person they know. El Que Dirán is a way to regulate the behaviors of the fringes of Latin America, by concentrating the disapproval of their parents and friends through gossip.
Well, when you have a child with autism or any other invisible disability, the  El Qué Dirán goes to a whole other level.  You and your child become the target, the source of gossip and judgement by friends, family, strangers and educators.  And the things people think suddenly become okay to say.  Well, it's not really okay...but you know what I mean.

When you tell other parents that your child has autism they will say:

  • "Really, but he looks so normal.  Are you sure he has autism?"
    • And you start to wonder -what is normal anyway? 
  • "He has autism?  I don't understand, he's so smart, he can talk..."
    • Because they assume autism impairs intellect and/or the ability to speak
  • "Oh, autism is no big deal.  That's the diagnosis of the moment."
    • Even though they have no idea what it's like to parent a child with special needs
  • "He just needs a sibling - when are you going to have another baby?"
    • But they don't know, you've tried. You are trying. It just hasn't happened.
  • "He probably only acts like that around you."
    • Oh, I parenting skills are the problem. 

And when you talk to those other parents about how your child reacts in certain situations like being scared of Santa Claus, or understanding certain concepts or adjusting to new situations (like school or parties) or potty training they will almost always say:
  • "Oh autism has nothing to do with it, that's all kids."
    • Except you know autism has everything to do with it and that it's not all kids.      

When you are sitting in  IEP/school meetings, fighting for services and appropriate placement for your child, the DOE folks will say:
  • "You are killing your kid with services.  When does he get to play?"
    • Except your child doesn't know how to play.  That's why the services are needed.
  • "Are you one of those moms who doesn't let their kid drink milk or eat bread?"
    • Because even though they say they understand autism, they really don't have a clue.
  • "Just because you bombard your child with services, it doesn't mean you'll get the outcome you want."
    • Because they don't get paid to believe in your child.
  • "As a parent, I understand..."
    • And you wonder if they really understand because they didn't say "as a parent of a special needs child..."

And don't even get me started on some of the things family has said to me about autism.  That's a blog post in itself.
Then there are the things unsaid - the stares, the eye rolls, the shaking of the head while your child has a public meltdown.  All they see is bad behavior and even worse parenting.  They don't see autism.  How could they?  Your child looks so normal!

But it's not so bad.  Because sometimes they will say:
  • "Are you in Special Education? You work really well with him."
    •  No, but I've taken a few crash courses.
  • "He's lucky to have you."
    •  I'm the lucky one. 
  • "He's come such a long way."
    • He has!  And he has so much further to go.
  • "I honestly don't know much about autism.  Tell me more."
    • One of the very best things someone can say, I only wish I heard it more often.  

In the years since The Boy's diagnosis, I've learned to hold my head a little bit higher.  My skin's gotten a little bit thicker.  I've learned when to speak up.  And when to keep quiet. 

Because I know it's not about what other people say, it's what I do that matters.  

* This post has been sitting in draft for over a month, reading Tessa's (Apple and Autobots) post - Straight From The 'Fridge--Er, The Incubator  prompted me to finish it.  Head on over there, you'll never believe some of things she's heard.
And for more on the El Qué Dirán in Latina culture check out these 2 posts:

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AutismWonderland - written by Lisa Quinones-Fontanez - is a personal blog chronicling a NYC family's journey with autism, while also sharing local resources for children/families with special needs.