A film by Lisanne Sartor

I was recently taken to task by the mother of an autistic boy for saying in my SIX LETTER WORD fundraising video that Albert Einstein may have had autism.  She said,

“Your quip about Einstein et al, helps others to ignore and dismiss the reality of what autism very often ‘looks’ like, a vignette that so many people wish to ignore or never ever see.”

Being the lapsed Catholic that I am, I was immediately flooded by guilt.  Being the type A personality that I am, I was also defensive because I always cross my t’s and dot my I’s right?

Wrong.

When I went back to watch my video, I realized this woman had a point.  While I still believe there are historical figures like Einstein who probably had autism, I never specified that the autism spectrum is wide and the reality of autism is often far, far different than a high functioning “genius” whose quirkiness makes it hard for him or her to fit in.  And my intention wasn’t to discount those children and adults who can’t speak or can’t care for themselves or who live in group homes or – well, the list goes on and on because, as I’ve often heard said, “If you’ve met one person with autism, you’ve met one person with autism.”  The range of people out there who have autism is enormous.

I tell my children, “If you want people to know what you really mean, choose your words carefully.”  Well, I should follow my own lesson.  I thought a lot about this woman’s post and finally responded:

“I think you’ve made a great point. My intention was never to define autism as a nerdy kid or a savant or to ignore the difficulties of parents and children severely affected by autism. I live with autism every day and know the difference. The spectrum is wide and I chose to comment on one part of it. I should have been far more specific. I believe that children on all points of the ASD spectrum need to be remembered, respected and acknowledged, as do their parents. Thanks for bringing this to my attention.”

So here I am today, reminding people that autism doesn’t just look like Einstein or Rain Man or Temple Grandin.  Autism can look like a child who bites instead of speaks.  An adult who lists to one side and types to communicate.  A teenager who wears a helmet because he self-injures for reasons he can’t tell us about.  Very often, other people look away, unwilling to acknowledge the uncomfortable truth that there’s a human being in front of them, someone who thinks and feels just like we do.  And that human being has a family who cares for them.  It’s not easy for anyone.  But it is reality.  And I’ll remember that from now on.