In Autism’s Shadow

in autism’s shadow      5.12.12

My last blog told the story of how my friend came to grips with her son’s autism. This entry looks at the situation from her younger son’s perspective.

For several years after the diagnosis, Peter watched his parents’ world revolve around his brother. Plenty of second-born kids grow up in their older sibling’s shadow, but try having an older brother with autism. Peter had just turned 1 when his parents got word of TJ’s diagnosis. And, as Peter is quick to point out when things don’t go his way, “It’s not fair.”

An early photo of Peter.

Looking back, his mom, Lauren, agrees. It wasn’t fair that Peter had to sit on the sidelines for several key years so his parents could focus on TJ. As Peter formed his first words, his parents lived in fear that TJ would never do the same. When other kids played at the Gymboree, Peter stayed home so a legion of specialists could play games with TJ.

Taking one for the team
It was not fair, and there was no choice. For kids with autism, the early years are critical. Autism has a way of locking a kid’s skills behind a thick wall. Who that child might become is buried deeper, bundled tighter, and takes more effort to tease out than with typical kids. The fact that Peter’s parents got right on the ball with TJ worked out for the whole family. TJ is fully verbal. He goes to public school. Friends seek him out. He will have more opportunities and greater independence than if he’d been treated like just another toddler. And none of this came without sacrifice.

Peter at a recent soccer game. Off camera, TJ cheers him on

Lauren and Sean have done their best to make those first years up to Peter. They make dates for one-on-one time with him. They bring him to a therapist where he can talk about things without guilt or apology. And now that Peter plays basketball and soccer, they bring TJ to his games. Sometimes TJ’s brotherly support consists of a brief, “Go Peter,” before he returns to the book or drawing pad he always brings along. But he is there and Peter knows it.

Autism through the eyes of others
Peter sees the way people look at his brother. In the summer, Lauren takes the boys to a local pool where Peter plays with the other kids while TJ invents his own games. He can spend a full afternoon dancing with his own shadow. One day Peter saw another kid staring while TJ did his unusual dance. Some kids might have pretended not to notice. Some might have said that wasn’t their brother. Peter went up to the kid and introduced himself.

“That’s my brother, TJ,” he said. “He has autism. If you want to know anything about it, you can ask me.”

This was a good day for Lauren, and she believes it was good for Peter too. He got to be an expert, and he got to help another kid understand something about autism and his brother.

Other days don’t go as well. Some days he comes home upset, like when a kid with autism in his class gets picked on and he can’t make it stop. One day a girl in his class told him TJ is a loser.

“He came home really upset,” says Lauren. When she asked if he thought his brother was a loser, he said, “No, he’s my best friend.” When she asked if what the girl said mattered, he said, “Well, it hurts.” Lauren told Peter it hurt her too. Then the two of them talked about things he could say if it happens again.

The brothers in a recent picture. Peter is now 10 and TJ is 12.

I don’t know if I could be so diplomatic. And Lauren has fantasies that aren’t as  socially acceptable, if only vengeance would make matters better instead of worse. “So I tell him it hurts my feelings too,” she says. “So he knows we’re in this together and maybe he won’t feel so alone.”

Hero one day, frustrated brother the next
Compromise doesn’t come easy to most kids but autism makes it even harder.

TJ likes to play the same game over and over again, Peter likes variety. They make a deal: If Peter plays TJ’s game, then TJ will play Peter’s game. The only problem is that  TJ often doesn’t want to play anymore when it’s Peter’s turn to choose the game. Part of this is kids being kids. Another part of it, and Lauren treats it this way, is a chance to hold TJ’s feet to the fire.

“Some days he gets it and plays Peter’s game, and some days he can’t do it,” Lauren says. Which means that sometimes Peter compromises and TJ refuses. On some remarkable occasions, when TJ feels bad about a fight they’ve had, he hugs Peter really hard and says he’s sorry. Sometimes Peter hugs him back but if he’s still mad, he pushes TJ away, and reminds anyone who will listen, “It’s not fair.”

Read Lauren’s blog about her boys, life, and really awful sushi.

About Joanne Barker

Joanne Barker is a healthcare writer and editor who lives in Somerville, MA.
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6 Responses to In Autism’s Shadow

  1. Fascinating! I haven’t thought about the impact of autism on siblings, particularly younger siblings. It’s an issue that I’m certain most parents of an autistic child struggle with.

    • It’s true. I also wonder if there’s something akin to survivor’s guilt for siblings of kids with autism. Given how complex most sibling relationships are already, this only further complicates matters.

  2. Kelly says:

    Moving article. Siblings of a child with special needs is a topic that doesn’t get enough discussion. They are very often unsung Heros of the family.

  3. Lauren Jordan says:

    I never thought about it like survivor’s guilt Joanne – that’s really interesting! I think it changes every day for Peter – some days it could be a survivor’s guilt thing, other days he’s just mad and wants everything to be “normal”. And most days he’s just fine. But I do know that the attention he requires definitely changes as he gets older. I love your writing Joanne – you are wonderful!!! XOXO

    • Thank you for weighing in Lauren. It will be so interesting to know how Peter’s experience and perspective changes over time. You and Sean have certainly given him room to express his feelings, even though he can’t have everything he wants.

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