I Forgot to be Sad

Posted by on Jan 16, 2011 | 1 comment

Someone said something that struck me in my heart of hearts last night.  I was chatting with several people about  Temple Grandin on Facebook, and realized that evidently she is not as well-known here in Canada as she is in the USA.

Dr. Temple Grandin, for those of you unfamiliar, is an amazing autistic individual who inspired a HBO movie starring Claire Danes.  Her story has, in my opinion, almost completely changed the autism conversation.  She is a brilliant person who has broken barriers as a woman, as a scientist and as a person with autism.

Claire Danes has won many accolades for her portrayal of Temple, and she just received a Golden Globe at this year’s ceremony.  One of my Canadian friends pointed out that while the movie seemed to be winning a lot of awards, she had no idea who or what Temple Grandin is.  I was surprised.  In the United States, Temple’s story has been heralded for over a year now.  In Canada, however, HBO is not as pervasive as it is in the US, and a lot of their programming gets lost in the shuffle. 

After I explained who Temple is, another commenter joined in.  “She has autism?  That’s so sad.”

This comment struck me sharply and immediately.  To begin with, it was obvious to me that this person, who did not know me or my experiences with autism, had no idea what Temple has accomplished.  To use the word “sad” in the same sentence with her seemed completely off to me. 

Then I realized that this comment was affecting me much more than just abashment at someone not understanding the greatness of Temple Grandin.  The immediate need to feel sadness for someone with autism, without knowing anything else, brought tears to my eyes. 

Autism sucks.  Autism is stressful, it is chaotic, it is nerve-wracking.  Autism can quickly turn an easy day hard and render simple outings impossible.  Autism affects entire families, not just individuals, and it is selfish.

And yes, for a lot of families, autism is devastating.  There are individuals so locked inside themselves they cannot have meaningful relationships or lead productive lives without elaborate intervention. 

For a lot of us, though, autism is also a magical, wonderful thing.  Autism has given my child the eyes to see things no one else around him can see.  Autism has helped me reach inside myself and find wells of patience I didn’t think I possessed.  Autism has made our family flexible, but stronger than I ever could have imagined.

When I realized for the first time that Jack was, in fact, autistic, I cried.*  I raged at the loss of a life that never was, never would be.  I stayed in a cocoon for several days and emerged transformed, looking at the world in a new light.  It’s been just over two years since we got his “official” diagnosis, and now autism has a cozy spot in our home.  Autism is an unlikely passenger in our lives, one we never expected to join us, but one we couldn’t imagine not having around now.

And somewhere along the way I forgot to be sad.   I think it’s shocking to me that someone’s initial reaction to autism is sadness, but then, they don’t know my child.  They don’t know my life.  Their eyes haven’t been opened to the things we see every day and used to overlook.

*Read “Jack’s Story” for the entire story

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