“Well what does she have?”
“Autism.”
“Oh, she does NOT! I’ve SEEN autism, and that isn’t it.”
This conversation happened on my trip home. It was my grandmother, whom I adore dearly and I hold no ill will toward her for it…but it reminded me of the times the conversation has happened in other situations.
When being told of her diagnosis after 2 years of searching and waiting her (special needs) teacher said, “Really? Well, I’m surprised by that.” Other people look at her and then at me with the huge look of doubt and you can practically hear their thoughts – She looks fine to me.
It takes all of my effort to smile and nod and move on into different conversations. I have to remind myself that these people don’t see her day in and day out. They don’t see her meltdowns (she saves those for us), they don’t see the way disruption in her routine makes things wonky, they don’t see her when she gets off the bus after school so exhausted from working at her therapies in class that she crashes on the couch for two hours.
They see a girl without the typical red flags, that makes eye contact, that smiles (at us) and hides from strangers, that talks and laughs once she’s familiar with the situation.
They expect what the propoganda shows, children ‘locked within themselves’. They expect behaviors and habits they see on news reports and fundraising sites. They expect an autistic version of ‘normal’.
They don’t know the years of therapy she’s been to help her become verbal. They haven’t watched her for 4 years like us, like her doctors. They don’t know that just 6 months ago she COULDN’T express her needs and wants. That six months ago the only calming activity when she got overstimulated was DPPT. That she does have moments where she fits into what they expect to see.
And I am grateful that they can see the child they do now. Thankful for Early Intervention, thankful for Developmental Preschool – that those two services have helped her become what she is today…and I am frustrated that people can’t see beyond the stereotype, that they don’t see that the spectrum is wide, and we happen to be on the higher-functioning end.
Look beyond the label, look beyond the stereotype…see the child and accept her for what she is. And if you’re going to take the time to ask the question, take the time to see the years it may have taken to reach that diagnosis…to see the months of therapy and what they’ve done to help the child…not look and judge because it’s not ‘typical’.
Well said!!
Casdok´s last blog post..Stress
Don’t get mad at grandmother for not getting the whole ‘autism thing’… remember that I had to deal with an incorrect autism (unofficial) diagnosis from a phd nit-whit who SHOULD HAVE known better. You’re right, the levels vary so much that even the doctors can’t get it without the right testing.
And hooray for Early Intervention. I’m with you 100% on that!
Nicole (SAHM Ramblings)´s last blog post..Is Early Intervention Worth the Trouble?
Well, you do provide a unique complaint in my book. Here’s hoping she continues to learn behaviors that make people wonder, but that more of them will keep their thoughts to themselves.
And before I go look at your other posts, I really like typepad.com. (I get no kickbacks.) You look to be more blog-savvy than me, but they have taken pretty good care of my less-than-tech-abilities.
Here here! You echo my sentiments exactly.
They don’t realize that six months ago she wouldn’t have had a phone conversation with Aunt Jess and now she does. Quite well I might add. (Especially when she’s honest about how she’s not being good for Mommy.) That the first conversation brought tears to my eyes because she spoke to me and I could understand her, not hear her ‘hiding’ against you.