Friday, July 9, 2010

Don't Be Sorry

And don't feel bad for us. It isn't necessary. Go ahead and ask questions.

Whenever someone finds out about our ASD, there is that moment, that moment when they are deciding how to react. And to be honest, I have not been very consistent about my own reaction to them knowing. More often then not, reaction from teachers, doctors, friends and family has been "I'm Sorry". And I have swung wildly from defensiveness (I don't need your pity), to apologizing for making them feel bad for us.

I have settled for the moment on "Don't feel sorry. We are lucky". And I mean that, because in this journey I have seen children far more affected, families shredded, people living in a state of crisis day in and day out.

There is Autism, this very broad label, and there is OUR autism. Our own little version of it. The more I talk to other parents on the spectrum, I realize that everyone has their own version. Some seem worse than others, some are barely perceptible. What has helped me is to break down our autism, and analyze why certain aspects bother, while others scarcely register.

Yeah. I like lists. Am a list person.


  1. The more I've accepted Ellie's Autism, the more aware of how some of my friends have avoided me. They don't ask me questions about Autism, how I'm feeling, etc. Do they feel sorry for me? Do they consider Ellie "retarded"?
    I don't want people to feel sorry for me! I want them to feel comfortable asking me questions and not avoid the topic. Ellie and Autism is a part of my life. If you want to be a part of my life, then stop avoiding the subject. Should I say anything to these so-called-friends or should I avoid them too?

  2. I get the same thing, Tina. But I actually think at this point they are trying to treat us all as "typical" as possible. If I bring it up they are there for me, to listen to my endless laments, but for the most part we proceed as normal. No-one I consider my friend has avoided me. But I have seen a few parents slip away at the playground if the subject comes up.

    Autism is a strange creature. It can effect any family. Sometimes it is severe, sometimes it is barely seen. And it scares every parent or want-to-be parent equally. Maybe those that turn away are just too damned scared.