When Norrin was first diagnosed with autism, family and friends were quick to offer both their support and their judgement. Their concern came off as criticism. But I guess that's just the way it feels when folks don't know what else to say.
He doesn't look autistic.
Doctors are too quick to diagnosis, he'll grow out of it.
My coworkers' neighbor's son has autism and they are like ____, ____ and _____.
He's not going to die from autism.
I can't imagine what it's like but you just have to get over it.
Like most parents, Joseph and I went through a mourning phase. It was such an isolating time for us. Autism felt like this loss and there was so much uncertainty. Though almost six years later the uncertainty has yet to leave us, I doubt it ever will.
Most of our friends and family have done their best to understand Norrin's autism. I say most because over the years we've had to distance ourselves from negative friends and family. Our circle of support is very small. Our circle only consists of people who get it. And the older Norrin gets, my fear is that less people will get it. Because now, instead of doubting Norrin's "normality," they say:
He has to learn.
You need to teach him.
He's too old for/to ____, ____ or ____.
Autism is easy (for lack of a better word) to accept from a cute and chubby 3 year old. People are more understanding of toddlers still teetering tiptoes. Because autism at 2, 3 or 4 can be cute. Autism as a tween or teen can be seen as intolerable. Autism as an adult male can be misunderstood.
I was reminded of this last week while watching Parenthood {season 5, episode 17 "Limbo"}. I have had a love/hate relationship with this show over the years. But I love the insight and story line that Hank (Ray Romano's character) brings to Parenthood. If you haven't seen it here's a quick recap:
Now in the last phase of [a major photo] job, Sarah and Hank have rented a professional-quality printer. When Max shows up for an afterschool session, he insists on using the printer and pushes Sarah off the computer, losing her work, despite her and Hank's best efforts. With the deadline looming, Sarah puts her foot down - no printing for Max until the Surfsport job is done - sending Max into a full-blown tantrum. By the time Sarah gets Max home, he's calling her a selfish fascist. Rather than apologize to her sister-in-law, Kristina runs after Max. When Adam comes home, an angry Kristina tells Adam all about what happened; clearly, Sarah doesn't get it, and it's time to have a talk with her... The next day, a thoughtful Hank can sense Sarah's still angry about Max. Sarah has found her "thing" in photography and so has Max, which for a kid with Asperger's can be a life raft on the stormy sea of life.
So in case you don't know, Hank has Asperger's - he actually has just been diagnosed. But back to Sarah. Sarah is Max' aunt - she knows that her nephew has autism but she is completely clueless on how to deal with him. She's pissed - at Max, Hank, Kristina and Adam. And she feels like she's owed an apology.
It was something that really struck me because I have been there with Norrin. Norrin is now 8 and I have seen some people in our lives lose patience with him. I've had to remind people that Norrin has autism and break it down for them and point blank say that Norrin is not the kid who will understand something just because you've told him three times. That's not the way it works.
Family wants to understand but sometimes they don't. Especially if they don't live with autism. That lack of understanding can be the thing that causes the rift. The lack of understanding makes birthday parties, holidays and special occasions challenging.
I was talking to someone about a recent family issue - all families have some kind of drama don't they? - and she said something that made so much sense. She said, "If you're friends with your family - that's great. That's a bonus. If you're not friends with your family, then you have to just find a way to stay family."
Labels: Atypical Familia, Autism, Autism Awareness, Parenthood
