NEED I EXPLAIN? A Discussion on the Discussion of Autism

We love the park! It’s a place where kids can be kids.

When I watch Jack at our home, he seems pretty ‘normal’ to me. I am used to him. I understand why he is doing most things and I can predict much of what will come out of him. I am good with a lot of his autistic behaviors. In fact, I sometimes appreciate their often predictable nature.

And then we leave the house. I suddenly become hyper-aware of Jack’s behaviors and how he might be perceived. Here are some sample situations we’ve been in:

1. I stand at the park making small talk with other parents while watching him jump and flap his arms as he watches spinning playground equipment.
2. The nurse at the new doctor’s office is surprised by his small tantrum when trying to get him to step on the scale.
3. A friendly person at church asks him a question and Jack returns with a long, unintelligible response.

Now, I know exactly what’s going on: 1) spinning objects make him very happy= flapping arms 2) he is nervous around unfamiliar equipment and is awkward at following instructions, and 3) he is using echolalia, repeating a phrase back in response to an unsuspecting person.

Jack stops playing to ponder…something.

So my dilemma often becomes: Do I explain to random people that Jack is on the autism spectrum?

In most instances, I want to give Jack a fair chance.  I want to see what he’ll do and how people react to him as himself. The stakes aren’t very high: why does it matter if someone thinks he’s strange or doesn’t understand his response? Don’t most kids do and say weird things? Even if I’m uncomfortable with his behavior or it seems pretty obvious, with strangers I generally don’t say anything.

I think one of my reasons for keeping quiet is that I don’t want to create an awkward situation. What are inconsequential people supposed to do about his autism? What should they say to me and how do they treat him after I tell them? And what would I really say? “You probably noticed he is flapping his arms. (Did they notice?) He is flapping because he has autism and he is excited”?? Yes, it helps them understand that there’s something different going on. Yes, it helps them become more aware of autism by having me point out a real-life example. Is it helpful for my Jack for me to explain? As he gets older I would think that I shouldn’t be sharing his diagnosis with whoever is nearby.

It Depends on the Situation

In the case of the nurse visit, I was ready to step in with that information at any moment–if there was a problem. It was my little experiment to see how he’d do when being treated as typical. Jack figured out one tricky moment on his own and then I discussed autism with the doctor, who needed to know that information.

Now, here’s a different scenario: We moved to a new state and showed up at church in our new area. A clean slate. I was torn as I thought about dropping him off at the children’s class—should I just see how it would naturally go and bring up autism if there were issues? Or was it better to just tell the teachers as I introduced him so they would understand from the beginning? In this case, I decided it would be helpful to both Jack and the teachers to explain the situation. That way he could be treated with some understanding and there would be less frustration with his behaviors. I feel I made the right call as they were very willing to accommodate and love him.

Now let’s talk about family and friends.

When Jack was first diagnosed, then came the question: do we tell people straight up or do we wait for a strange encounter to occur? With family and close friends, yes, we just told them. We wanted them to know what was going on in our family and for them to gain an understanding and love for Jack. And we let the word spread as needed to other friends and acquaintances.

Once it’s out in the open, how often should we refer to it?? I think about autism in response to almost every reaction Jack has. As much as I would love to give a running commentary on Jack’s world to those around me, I try to hold back. I really do like talking about it (hello, I started a blog on the subject!) and I welcome any comments or questions others bring up. I know it’s NOT that way for every autism parent and we should all be sensitive to each other’s preferences. Obviously we’ll have to reassess our approach as he gets older, but so far we have seen success in being pretty open about Jack’s autism.

> I’d like to start a discussion on this topic: For those parents of kids with autism, do you keep quiet or do you share information with everyone?? And what would you like for people to do or say in response? If you do NOT have a child on the autistic spectrum, would you prefer for someone to point out their child’s autistic behavior or not? Thanks for your input on this tricky subject! <<