Monday, August 30, 2010

"Hell is other people"

Just back from a two-week family vacation (posting blog entries en route), I’ve been thinking about how that famous line from Sartre’s “No Exit” applies to parents of autistic children. For, so often, it’s the presence of other people that makes life with autism most challenging. If we autism families had the planet to ourselves, life would be so much easier.

True, being the parent of an autistic child, having contributed my share to his genetic makeup, I’m not the most social being on earth. In particular, I’m not the kind of person for whom the sudden appearance of strangers in a place I’ve been occupying by myself (or with my close kin) fills the heart with joy. 

But when one of the close kin you’re with is prone to loud outbursts, bumping into people, grabbing their fingers, charging through groups instead of saying “excuse me,” calling us “dumby a*hole,” holding forth on taboo topics, and, finally, wandering into rooms uninvited, turning on the ceiling fans, and photographing them with his camera, the sudden appearance of others in previously unpopulated settings makes the heart sink.

Yes, J’s public behavior, overall, has improved over the years. But, with every half inch he grows, with every half tone his voice descends to, and with every phoneme, vocabulary word, and syntactic structure he masters, public expectations of him keep rising, and rising, and rising. Once he starts looking like a full-fledged adult, what sort of “other people” await us?

4 comments:

Mrs. C said...

I laughed out loud! We have an entire autistic CULTURE in our family, tell you what. We make life hell for other people, however unintentionally. :)

And you are brave. I haven't taken children away from home on an outing lasting more than a couple hours for several years.

Deirdre Mundy said...

My kids AREN'T Autistic (just young and ADHD) and I understand what you mean!

Strangers have expectations=-- and you never know in advance what those expectations ARE. Will they be overly permissive and encourage behavior you're trying to put the kibosh on? Or treat GOOD behavior like it's a federal offense because it's never good enough?

I can't even imagine how hard it gets when autism enters the mix.

One thing that I think may help, at least in the next 10 years-- people are more aware of autism, so they may be more likely to think "Oh, he's autistic" and just stand back and let you parent without getting in the way...

Or is that unrealistically hopeful?

Katharine Beals said...

Interesting... If these hopes of a more autism-tolerant society come to pass, they may have the unintended consequence of letting *every* kid off the social niceties hook! On the other hand, it sure is nice to parent without others getting in the way.

1crosbycat said...

Three years ago this weekend, my brother and his family came to visit. At one point, my asperger son did something - getting upset and mouthy or something, I cannot recall specifically - and I took him into the laundry room to talk about it. He also did not sit nicely with the other kids to eat (outside at picnic table), and did not follow nice rules like "no drinks outside the kitchen" like my brother's kids. Afterwards, he and his wife criticized our parenting harshly, and when we pointed out they have 3 very compliant children and have no idea what life is like in our house, they replied they have friends with an autistic son. Judgement is everywhere. We are fortunate that our son is fairly well behaved in public, but when we travel, he gets agitiated, angry, obnoxious, rambunctious and its all in a little hotel room with the six of us.