Telling a Child He Has Autism

Tuesday night was a big TV night for many of us who have children with autism. NBC’s Parenthood, which has tackled the topic of autism spectrum disorders since one of its characters, Max, was diagnosed with Asperger Syndrome back in season one, did a great job creating anticipation with promos for the episode where Adam and Christina Braverman would finally tell their son about his diagnosis. (I was personally equally interested in seeing Crosby get his rump kicked after cheating on fiance Jasmine.)

Before discussing how some reveal the news to a child, I have to make a couple of quick points about the show itself. Not to be a critic but it was a little surprising to us that Max’s character hadn’t before now figured out, at the very least, what autism is… at most, that he, in fact, has it.  Consider this:

1. I can’t imagine a kid so bright would spend several hours a week with a tutor working on Applied Behavior Analysis concepts without wondering why he was working with her. Max asks questions about everything he doesn’t understand, how could he really have gone so long?

2. In the scene where they finally talk about his diagnosis, Max asks. “What’s Aspergers.” His parents say it’s a form of autism. He replies with, “What’s autism?” Last season, the whole family teamed up to walk for autism, with Max being the most excited to help. If he’s so intelligent and curious, wouldn’t he have asked those questions then? They talked about it quite a bit in that episode.

I get it that this is television and not real life but it seems a bit unreasonable that a child his age (approx 9 years old) wouldn’t know that he was on the spectrum… Just sayin’.

But all that aside, Parenthood did a good job not only creating thought-provoking content to open the door to  discussing the topic, but did us all a service by not wrapping things up in a pretty little bow at the end. Adam and Christina’s journey may not look like ours at home, but it’s a great reminder that we all process and handle things differently. Adam’s realization that their family life now has a new “normal” was something parents of a child with any disability can relate to.

Ok, now to real life.

When Jacob was finally diagnosed with autism after 4+ years of early intervention, I couldn’t imagine going another day without him knowing what was going on. We were adamant that providing our son with enough age-appropriate information would empower him, and help to prevent him from being blindsided by potential comments from anyone at school or in the community.

We probably could have used the guidance of a professional but Jeff and I decided to just tell it to him straight, the way we always have with big topics. Hey, I’m the mom that talks candidly about death, stranger danger, the human body, abuse, and challenging real-life situations… how could I possibly keep this from him?

So, as we sat down for a snack one afternoon, we had “the talk.” (The following conversation is a recollection of actual events but not a word-for-word account)

“Hey Jake, I want to talk to you about something.”

“What is it?”

“You know how we’ve had those classes at the other school and how we saw Dr. Erica and sometimes have meetings…”

“Yeah.”

“Why do you think we do that?”

“I don’t know.”

Well, I think it’s because you have a special brain.”

“I do?””

“Yeah, you know how you could read when you were four and how you do all that cool stuff, adding letters, remembering really small details and figuring out math?”

“Yeah.”

“That’s part of your special brain. Your brain is able to do stuff some people — even grownups — can’t do. But it can sometimes make some things harder too. Like you know when you don’t like loud noises or want to leave when it’s crowded or maybe have trouble talking to your friends sometimes…”

“Yeah.”

“Those are some of the harder things for your brain. Like everyone, you have some easier stuff and harder stuff… but your brain also can do things a lot of people can’t. What your brain has is called autism. So those meetings are to help you with those things that are hard, so you can focus on all the cool things your special brain can do.”

“Ok.”

And that’s how our almost-6 year old discovered he had autism. There were no tears, arguments or pressing questions – it was a simple five minute discussion that served as a long-term conversation starter, a topic we would return to as questions arose over the following months.

We are not perfect by any means and, frankly, I was and still am flying by the seat of my pants. But I know my kid and one thing we constantly try to drive home with all three of our kids is that we’re on the same team and how important trust and honesty is to our family. Now, when kids ask Jacob about leaving the class for speech or occupational therapy, or why he has a tutor at his house five days a week, he knows enough to communicate with others and understand that what he has is not some horrible curse, but just his own unique challenge.

Whether your child has a disability or you’ve had to discuss a serious topic,  when and how did you talk to your child? And for those who haven’t, what’s your plan?

Advertisements

3 responses to “Telling a Child He Has Autism

  1. We didn’t tell my son till he was about 8….he wasn’t as “Asperger-y” as Max is (or your Jacob) 😉 He wouldn’t have gotten it till then – even though we’ve been doing the walk since he was 5 and even had shirts made with “Team Reece” on them. Even though he’d had 3 years of ABA and 5 of speech therapy….we eventually came to the decision that we would tell him because his 2 younger siblings were starting to question things.

    A really good friend of mine (and autism guru – her son is in his 20’s and she has written books) in years prior to this told me to lay the seeds…..similar to what you are talking about here. For years we would say things like, “Wow, I like how your brain figured that out – mine doesn’t do that!” or “Playing sports aren’t for everyone – we’re all different. If you prefer to take a chess class, that’s fine.” or “I know it’s hard to get unstuck from thinking about computers all day long….that’s part of how your brain works, but there are things we can do to keep your attention on your math.”

    When it came time to tell him about autism, he wasn’t surprised at all. I think he felt better because he had a name for it. We were never that family that pushed it under the rug – we were always open with it with friends and family, so why not be open with him? The key is to lay groundwork so that when they are developmentally ready to hear it, they aren’t shocked. Oh, and my other kids had also heard this dialogue over the years so they weren’t shocked either.

    The main thing we had to be careful about is that he was not allowed to use it as an excuse – because he tried 😉 He told his then special ed teacher in a moment of frustration, “I can’t do it! That’s too hard – I have autism, you know.” Ha! Luckily, she laughed and told him, yeah – look around sweetie – so does everyone else in here!

    Now, at 12 and 1/2, Reece has spoken to his general ed class about his autism and how it affects him. I’m glad he feels confident and safe enough to do that.

  2. Great first post – We have a few friends who have children with a form of autism.. It’s difficult – One has Asperger’s and two have a child with severe autism… The oldest is 15 and he is so very innocent.. You can’t help but love him.. My daughter has been friends with these children since she was very little and her heart is for these children and she decided a long time ago that she wants to be a doctor/advocate/something that will help improve the lives of these children and their families… And my kid’s heart – I can see you helping to do some amazing things… I know she will be a frequent visitor of yours.. She is 14 and is new to the “blogging” world..

    Love
    kelly
    I’ve Become My Mother
    Kelly’s Ideas
    Amazing Salvation

  3. Great post, Jackie! When Emma started communicating with us (at 9) you can imagine that we were trying to backtrack and remember ALL the things we said since we never got good at self-editing ourselves in front of her. She had sat in on a few evaluations where psychologists and therapists never thought twice about saying that she had autism as well as saying many other things about behaviors and such. We did too, of course. So now that I know she was listening to that, even when she appeared to be “in her own world” – and listening to pretty much EVERYTHING, I have been able to ask her about it how she feels about knowing she has autism. She typed out “I’m fine with it”. I think the knowing somehow empowers her in a sense. She wants to help other kids like her and it’s helped her to hear other encouraging stories from other kids. I know that things she’s heard about herself have been painful in the past. I’m not sure if this was the best way that a kid should be exposed – straight out and so uncensored but she seems okay and pretty self-assured. I think knowledge can lend way to self-empowerment.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s