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Saturday, March 16, 2013

Autism in public places

This article  ( link ) is getting a lot of buzz today.  It talks about a huge issue in autism---how do we balance our childrens' rights to be out in public with the rights of those they might be somehow disturbing?

My feeling is that common courtesy on both sides goes a long way.  I would not take Janey to a quiet restaurant or movie, because she would not be quiet.  If I were paying for a movie or fancy dinner, which in these days is a financial stretch for many of us, I would not want to be unable to enjoy myself because of noise.  That includes of course other types of noisy people, like those who talk during movies or those who get drunk and disorderly in restaurants.  However, if a place is public and has a built in noise level, or if it's a place Janey needs to be and has every right to be, I expect others to be understanding of her.

I have burned into my mind for all eternity two times that Janey was in a place she had every right to be and she and I were treated rudely.  One was on a commuter rail  ( here's that blog entry ) and one was in a doctor's office she had an appointment at ( read about that here ).  Both incidents still make me cry to think about them. They were, to me, clearcut examples of how people should not react to someone with autism, someone with differences.

However, there are many, many times Janey has been treated with kindness and understanding.  As she gets older, people are more able to see she is different, and they see that we are all trying hard.  Tony takes Janey to stores a lot, and at the stores where she is a regular, she is treated like a star, almost.  She usually gets a lollipop at the register, and she gets a lot of smiles.

Most of the world, though, is in-between.  There are so many times that I am made upset not by outright rudeness, but by staring, or disapproving looks. The ultimate example of that happening is in this post ( link ). I am not a person who is going to put Janey out there into situations to prove a point.  Nothing in this world makes me more uneasy than being the center of attention or being singled out.  But short of keeping Janey home at all times, it's impossible not to get into such situations. Janey makes odd noises.  She cries sometimes.  She jumps around.  She talks oddly and repeats phrases.  If that bothers people, then I do have a problem with that.  None of those actions of hers hurts others.  None of them are illegal, or keep others from doing what they need to do.  I am not going to hide her because she might make someone uncomfortable.

The article that got me thinking gave a great example of a case where I would draw the line, where I would remove Janey from the situation.  It told of a man with autism that would eat food right out of the hot food bar at Whole Foods.  That is a health and safety issue, and a rudeness issue.  If Janey starts to do something like that, I firmly tell her no, and if she continues, we leave.  I don't expect exceptions to the rules for Janey.  She needs to learn what she CAN learn, so that she CAN be out in public.  But her just being autistic, without doing anything unhealthy or illegal or wrong, is not grounds for her not being welcome in public.

In a perfect world, everyone would be striving to be as kind and fair and understanding as they could.  That's not this world.  I need to be strong enough to stand up to the jerks out there, and also understanding enough to find that balance between Janey's rights and the rights of others.  It's not easy, but then again, not much about this autism parenting gig is.


mknecht24 said...

Agree 100%. Courtesy extends both ways. Everyone has a right to be out in public, but I try to make sure 1. that Lindsey is reasonably comfortable and 2. that she is behaving appropriately (within her ability to do so). I am also much more sympathetic when I see other people having problems in public for whatever reason. We are all human. If Lindsey ruins your lovely trip to CVS (haha - shout out to Janey!), get over it. It's not like I'd let her ruin your wedding. And regarding food bars or buffets, I avoid them...I've seen plenty of little kids (and big kids) putting their dirty hands right in the food trays. No thank you.

Suzanne said...

I love that---ruining a special trip to the CVS is a lot different than ruining a wedding! And that's the perfect way to put it---behaving appropriately with her ability to do so. That's all we can ask. And being out today, I saw a very lot of kids that were not being asked to do that, and they weren't autistic in the slightest. And now you have made me never want to go to another buffet---thanks for that!

anabel said...

You can't make everyone happy all of the time. Yesterday I got honked at by a man who was very annoyed with me because I took too long to move on a green light. I also drove at the speed limit, which I could see through my rear view mirror, almost made him pull out all the hairs on his head. When the road split from one lane into two, he zoomed past me onto what I'm sure must have been a very important affair.
I'm sure Janey must get annoyed with people too. We all have to put up with things we don't like, but it seems when someone is disabled in some way, and not acting "normal" it makes the jerks come out in droves. Autism is not an excuse, but it can at least explain. Obviously, some places are just not right for kids, but we're not going to lock them up in the house all day so someone somewhere isn't annoyed by them on a train or something - the horror!