Not Defined by Autism

There's a saying about autism that is very true---"If you've met one person with autism, you've met one person with autism"  I've been thinking lately how the word "autism" can mean very little, even when modified by the sometimes politically incorrect low or high functioning labels.  This fact was brought home to me strongly when I tried taking Janey to a vacation event run by the local autism agency.  It was an animal show---or I think it was, as we couldn't actually stay for it.  After a half hour free play time, which Janey tolerated because Tony came with me and stayed with her every second, all the kids were supposed to sit on the floor near the man showing the animals.  I was amazed that most of them did.  Janey, however, did not want to be there any longer, and showed that vividly by kicking me in the face.  I got the message and we left.  I felt extremely low for that ride home.  If Janey couldn't fit in in a crowd of kids with autism, where in heck would she EVER fit in?

After lots of thinking, I realized that was a harsh conclusion for me to come to.  Janey has a unique personality.  ALL kids have unique personalities.  But in picking "autism" as the word to describe Janey, only a little part of who she is gets highlighted.  She IS autistic---she's been evaluated at least three times and meets the criteria for that diagnoses.  But she's more....

Janey is VERY easily bored.  That fact came alive this vacation week.  Neither of her brothers were around, and Tony worked half days.  Although I did my damnest to keep her entertained, Janey hated this week.  Janey likes activity, movement, noise, excitement.  She doesn't need a lot of down time.

Janey has next to no patience.  If she asks to do something, and I don't do it immediately, she freaks out.  If she wants to snuggle, she wants to snuggle RIGHT NOW.  If she craves a walk to the ice cream store, it has to happen IMMEDIATELY.

Janey has a hair trigger.  This relates to the first two.  If Janey is bored, and if she wants to do something to relieve that boredom, and I don't do it immediately, she lashes out.  I was hit over and over and over during this vacation week, almost always because I wasn't doing what Janey wanted to do.

Those are three mostly negative facts of Janey's personality.  Here's some positive ones...

Janey enjoys being out and about.  She doesn't have a real craving for routine.  This is where the standard view of autism doesn't much serve Janey.  Her happiest day this vacation was when Tony and I took her for a long drive to parts of the state we hadn't seen before.  Just seeing the scenery, stopping here and there for a bite to eat or a run at a scenic turnout, resulted in a super day.  She did get mad at one point when she wanted her shoes off and that didn't happen immediately, but overall, the day was a dream compared to the other vacation days.

Janey is passionate and enthusiastic about things she likes.  If you have a view of kids with autism being self-contained, you aren't picturing Janey.  When music comes on that she likes, her excitement and joy are completely infectious.  She goes into a state of total happiness.  Last night, she discovered "The Pink Panther" on YouTube, and her hysteria over the antics she was seeing was something else again.  She can get excited beyond belief at pesto, at Chinese food, at TV shows, at seeing someone she loves.  She loves things hard.

Janey has a wonderful sense of humor.  She likes nothing better than the whole family being together laughing at something.  One way to get her out of a bad mood is to put on a funny show or movie we all like and laugh loudly at it.  She says things that I think are designed to crack people up, and she loves it when people laugh.  The other day, at the ice cream store, she got chocolate milk instead of her usual ice cream.  The clerk commented on that, and Janey said "I totally need a drink!"  The whole place fell apart laughing.  I swear Janey knew what she was doing.

I imagine that every parent of a child with autism could write something like I have just written---aspects of their child that define them, outside of the ones that autism dictates.  It's why what works for one child with autism might very much not work for another one.  It's why I have a hard time sometimes with advice that is general, advice about "what works for kids with autism" Janey's particular blend of attributes makes her who she is, not her autism.  She's a challenging kid----there's no question about that.  But I don't think it's her autism that makes her challenging, any more than it's her autism that makes her such a firecracker.  She's Janey.