Monday, March 7, 2011

Parenthood: Telling Your Child about Asperger's

How do you tell your child he has autism? Or, how do you tell your child he has autism when perhaps you are just hearing the information for the first time too? We asked some questions on our TPGA online community page and got some great answers. We also asked whether our community would be watching NBC’s, Parenthood last week when the topic was a featured story.

A young boy, Max (Max Burkholder) discovers he has Asperger’s when he hears his father Adam (Peter Krause) yelling at his Uncle Crosby. Adam shouts Get it through your thick skull, your nephew has Aspergers! Looking down from the stairs, Max says, I have Aspergers? What is...Aspergers?Stunned, the adults were speechless.

In the storyline, the parents, Adam and Kristina (Monica Potter) have apparently known for a while that their son has Asperger’s but decided he was too young to be told about it, even as they apparently set up OT and ABA over the past year.

Figuring out the “perfect time” to explain autism to your child may be near impossible, but the alternatives, ignoring it, or treating it like it is a secret, are likely to cause more harm, or make it harder down the road. One of our community members, Kassiane shared: “I was diagnosed at three, but it was a big secret until I was 18. I heard the word hyperlexia a bit, looked it up, then looked up autism and Asperger’s (I was 16). Yep, that's me. At 18 I obtained my pediatric records, and there it was, the bi...g bad A word. It wasn't a traumatic thing to find out, but I sure wish I'd known earlier.”

I tend to be skeptical whenever a sitcom tries to throw autism into a storyline, and it would be hard for any television program to write it perfectly, but Parenthood really did a pretty good job. “Well, what's Asperger's?” Max asks. Adam responds, “Asperger's is a form of autism.” Adam struggles, and tells Max that his brain is “wired differently.” As many of us might expect, the very literal-minded Max responds, "I don't have wires inside me. I have muscles and I have capillaries and I have nerve endings and I have blood and I have bone.”

The parents continue to blunder, tripping over each other’s words: Adam calls autism a disability; Kristina says, “Well, it's not really,” so Adam calls it a syndrome. Everyone looks frustrated. The heart breaker is when Max asks if his parents or sister have it. When they say no, the audience is left feeling like Max is even more alone, but it’s hard to tell as he escapes to his room, just as it might be hard for us to read our child's face if a similar scene played out in our own homes. The parents basically blow it; not grandly, not on purpose, but they get it wrong.

It was great to see that part too: messing up. We do it all the time as parents, even when we’re earnest and well-meaning. The good news is that most of the time, as in this episode, we do get a chance to redeem ourselves. Adam and Kristina seek help from their family therapist who provides a sort of script. Most experts agree, rehearsing in advance what you will say to your child can make the whole thing go more smoothly.

It’s also important to speak to your child at a developmentally appropriate level. Another TPGA community member, Stacey says, “My son is 4 and has asked what autism is. We told him it is a very special way of thinking...seems to be digestible so far.” Marj’s family was more direct, “We just flat out said, ‘You have autism. Your brother has autism. Do you know what that means?’ And we read him some great kids’ books on the subject. He now says, ‘Everyone has a little bit of autism. I think autism is like super powers. Mine is that I have touch super powers. My brother’s is super-hearing and super-speed.’”

I appreciated the dialogue that showed the resistance the father had upon reading the information from the therapist. It would be great if we all came very quickly to the acceptance phase, but it's far more likely that at least one parent would be in denial or not readily accepting their childs differences. He pushes back, “Qualities”, like being able to remember detailed facts, and “Difficulties,like developing friendships- “I think it’s just a bunch of positive language. It’s a bunch of lies.” And when his wife asks him to use the script he answers,  “I don’t want to memorize a bunch of facts that have been polished up to make it sound like he’s won something.” It’s painful to be confronted with a list of your child’s deficits, and a typical response is to be defensive. This can easily divide parents, when it’s even more important for parents to be “on the same page.”

As the episode closes, there is feeling of hope, and that the possibility for more communication is there. Adam, the resistant father, comes around to both using the script, and highlighting the more positive attributes of his son’s autism. Mom and Dad are clearly on the same team, and do a much better job of talking to Max again about his Aspergers.

My own son is nearly non-verbal, and it’s hard most of the time to figure out how much of what I’m saying he’s really taking in; and as it is with many children, its even harder to figure out what he feels about what he’s heard. Because we don’t really have the part of the spectrum at our house, that is featured so often on television, it’s hard for me to know for sure if this episode of Parenthood was a completely accurate portrayal, but I’ll be watching. As a member of the autism commiunity, I appreciated the very, very, good effort the writer’s showed, because as Debra, another reader, posted: “I still think it is a good way (precise or not) to bring the subject matter to light in the mainstream to those who don't know about it or understand it.

Having a child understand their autism provides a chance for a kid to name their own qualities and difficulties, allows them to be a partner in their therapies and education plans and to advocate for themselves. And we will just continue to educate our communities, because when they understand our children, obstacles can be lifted, and ultimately people with autism will have the chance to reach their full potential.


To watch this episode of Parenthood, click here.
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