Sunday, September 4, 2011

Wearing My Heart on My Hat

One of the unique challenges of parenting a child with high-functioning autism is the invisible nature of the disability.  For William is definitely a normal looking kid.  (Actually, he’s darned cute, if I do say so myself!)

One friend told me that “It’s lucky he looks so normal.”  To her it’s a good thing, that William can “pass” for neurotypical in the superficial world.  And, maybe it is in some ways. 

But in other ways having a child with an “invisible” disability can be a drawback, especially when your child’s behavior doesn’t jibe with his “normal” appearance.

William is a social type that one book describes as “outgoing but odd”.  He is preternaturally friendly, and it doesn’t matter if you are standing in line at Starbucks -- he wants to meet you.  And ask your age, birthday, favorite color, favorite number, and if you have a Wii.  

People have generally been solicitous of him, sometimes even charmed.  But as he gets older, and bigger, this “outgoingness” seems a little odder. It can come across as prying, precocious and maybe rude.  And I’ve noticed people at the dog park, the ball game, and, yes, in Starbucks, who don’t quite know what to make of him.

If he was a child with Down’s Syndrome, or had an obvious physical disability, it would be different.  Unexpected behavior would be attributed to the disability, even if it wasn’t actually related.  

With autism, not only is the atypical social behavior related to the disability, it IS the disability.  How ironic -- this social disability that would be beneficial to be visible in society, is unseen.

So I wore my “Autism Awareness” hat a lot this summer.  To the dog park, Target Field, the State Fair and all over Boston.   It’s a subtle message, but people sometimes make the connection.  I saw a young mother on the swan boats in Boston’s Public Garden noticeably relax as William was "making friends" with her daughters when she saw my hat. 

Though it says “Autism Awareness” on it, this is what I hope the hat says to those we meet: “I am the mother of this boy with autism.  His disability makes it hard for him to socialize according to the ‘normal’ rules.  Please talk to him and see his heart, his soul, his optimism and his love. Thank you.”


  1. I really identify with this. my son Aidan started second grade at a new school. We are from California and his friends there knew him from preschool. Now the kids here don't know him, don't understand him and he is having a difficult time with the way they are perceiving him. it is breaking my heart. The way you describe your son reminds me of mine. It's nice to identify.

  2. Your beauty shines through as Mom. Again, I appreciate your honesty. What you did by wearing your hat shows the world that you love your son and you want to help the world love him. Kudos and Thank You.