Wednesday, January 16, 2013

We all have autism

Things are changing here in Vermont and I had a meeting last week to get a case manager with the organization that will help us with services for TJ.  We were talking about his autism diagnosis and the re-definition of autism, and if he still is classified as having autism.

I said to the Intake Coordinator, "Oh yes, we still have autism."

It struck me how true that statement is - we all have autism.  My entire family.  It effects every one of us, in different ways, at different times.

My sweet Peter struggles with it the most, I think.  It's hard to have an older brother with autism, especially as they both get older and he can clearly see the differences between his brother and typically developing 12-13 year olds.  And when you're 11, and being cool is everything, you don't really know what to do with it.  We see it every day in him, in how he behaves, in how he reacts to us and to TJ.  Sometimes he wants to talk about it, sometimes he doesn't.  I just have to trust that he will find his way, with our help.

I hope I hope I hope I help him enough. 

Sean and I have autism, daily.  In dealing with both of our boys.  In everything they do, and in everything we do.

Our parents have autism, even if we don't hear about it.  I know it is often on their minds, hoping for his success, worrying about his future.

My nieces and nephews are beginning to notice that TJ is different from other kids.  They have autism, too.  They love TJ, and I'm really happy when they ask about his differences.  They are wide open and so not judgemental...their curiosity is pure and innocent.  This is how I wish everyone acted around him - knowing that autism or not, he's still TJ.

To their credit, most people who know us are wonderful around TJ.  Being close to us means our friends have autism, too.  Every now and then, however, I see the way some kids look at him, like he's some weirdo, and it kills me.  TJ could care less - if he does notice he does not care.  I'm trying to take his lead and follow suit, but it's the hardest part of being a Mom I've ever experienced.  It stabs at my heart.

I suppose in a lot of ways we are very lucky to have autism.  It expands our minds and our hearts, and opens up a part of the world we would otherwise never know about.  It has brought some amazing people into our lives.  It has bonded us as a family in such a powerful way.  Sometimes I find myself wanting to say "I didn't sign up for this!!!", but that's just stupid.  You never, ever, know what's going to happen, and there are no guarantees.  Like I tell my kids, "You get what you get and you don't get upset."

Well, it's ok to get upset sometimes.  But that doesn't change the fact that we all have autism, every day, and it's not going away.

And we are better for it.


  1. Hi there
    I'm a filmmaker from Australia and I've been following a family who have three sons, the eldest Aaron having autism. He was diagnosed around 4 years old, and Aaron is now nearly 30!
    Interestingly, when I last caught up with them (the family live in London now) they said the same thing 'we all have autism.' It is certainly true of them as everything they do takes Aaron's needs into account, even relocating from Melbourne to London 12,000 miles away.
    Interesting posts. Thank you for sharing!

    Mark Poole

    1. Thank YOU for reading! Your work sounds so interesting!

  2. "We all have autism" is so well said. We hear about so many families feeling isolated, sometimes not even daring to go out for fear that their autistic child will cause disruptions or harm. It's great you have solidarity and support. The National Birth Defect Registry ( help match up parents with others living similar experiences; it's a way to feel less isolated that can really help. Thanks for sharing your stories!

    1. Thank you so much for taking the time to comment! I agree - isolation can make living with autism a hugely difficult experience. People connecting are key! I'm so grateful you enjoy reading my posts. Have a great day!