Here's the set up: I had a dental cleaning today (and can I just interject that I really, really dislike dental visits on a good day); my dentist popped in to say hi and check on the family, asking specifically how Evan was doing. After she left, the hygienist asked what was wrong with him, and I told her that he has autism. Her face fell and scrunched up all at the same time, her shoulders dropped and her hand when to her heart; "I'm so sorry", she said.
I immediately felt weird about her reaction. I didn't feel right. Her reaction didn't feel right.
"No, it's o.k.", I said, sitting myself taller in the chair. "He's good."
The hygienist went on..."My Aunt's daughter had Ash-berger's, and she went through hell".
Yes, the misspelling is intentional. You can imagine my eye strain as I withheld my eye roll, though I couldn't even vocalize a reaction because I was still taken aback by her first comment.
To be fair, this woman meant no harm or disrespect with her statement; in fact, I would argue in her favor that she was doing her best to be empathetic and to connect with me. The Gretchen of 5 years ago, honestly, would have a) started crying, and b) said, "thank you", while appreciating that someone was acknowledging my struggle. The Gretchen of 1 year ago would have felt the same, but without the crying.
...today's comment felt Unwelcome. Unwanted. Uncomfortable.
So, what's changed? How did I go from there (yes, please feel sorry for me) to here (I don't like the way that comment feels)? This is what had me thinking this afternoon.
And, here is what I ended up with - somewhere along the line, within the last year, the last 6-8 months really, Evan became AWARE. He's trying to figure out this autism thing, what it means inside his body, and what it means out in the world. From Day One of his diagnosis, we said we would never, ever be embarrassed or ashamed of autism, and that is what we've taught him. Yes, there are tough days and hard work, but autism is also amazing and we are trying really, really hard for him to see that in himself.
Just a few days ago, Evan was making a comment to me that started, "some autistic people...", which really made me pause. It was the first time I've heard him talk about autism in language that is not 'People First'. Disability advocates have fought tirelessly for everyone to adopt People First Language, which places the person before the disability (i.e., the person with autism, versus the autistic person); this is somewhat controversial within the autism community because there are many people with High Functioning Autism that proudly call themselves Autistic. In general, our family practices People First Language; we rarely refer to Evan as 'autistic' but instead say 'he has autism'. However, when I heard him say, "some autistic people...", he meant people like him and what I felt was pride. Not shame. Not degradation. Not disadvantaged. THIS, this is EXACLTY what we are trying to instill in him.
I think, then, what made me so uncomfortable earlier today was that in the look the hygienist gave me I saw pity. Pity, however, is not even in my emotion catalog and I didn't like the way it looked when she offered it up.
You can feel sorry for my stress, you can feel sorry for Evan's stress, you can feel sorry for the hardships that surround us. You should never, not ever, feel sorry for Evan. I would take away his autism for the struggles it causes, but I would never strip Evan of his being.What I learned today was how far I've come emotionally on this crazy autism ride, and, more importantly, how great Evan is doing in his personal acceptance of being an autistic person. Relentless Forward Progress.