Understanding Siblings with Asperger Syndrome
By Dan Coulter
A few years ago, my wife, Julie, and I made a video designed to help brothers and sisters understand siblings who have Asperger Syndrome. We interviewed children and adults from sixteen families. While we heard a lot about sibling difficulties and challenges, we also heard a lot about solutions and support.
Because I've been reading a lot about Asperger-related problems between siblings recently, I thought I'd share some quotes from the neurotypical brothers and sisters in the video.
They were not shy in talking about the challenges of dealing with embarrassing and annoying behaviors. But they also talked about gaining understanding -- and ways they’ve found to get past the challenges and help bring out their siblings' strengths.
I remember a line I heard guitar player Leo Kottke use in a concert, about musicians building on each others' work: “Brilliance borrows, but genius steals.” Whether you get ideas from a video or a book or a support group, “borrowing and stealing” is one of the best ways to experiment with approaches and find what works for your family.
Here are insights on things like standing up for your siblings, dealing with meltdowns, seeking counseling, and learning patience.
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Geneva is a teenager who talked about Asperger Syndrome and her older brother, Kenny.
“Just, he’s extremely literal. If you say ‘throw the computer in the back of the truck,’ he’s really going to do that. That’s actually happened.”
“He talks non-stop.”
“…he gets bullied a lot, at least he used to. Kids would make fun of him for just, the weirdest things…it was horrible. He’d come home crying off the bus, just ‘cause kids are cruel…I remember one time in particular, we were on the bus and one of the older kids was making fun of Kenny…saying he had chicken legs…I told him (the older kid), ‘YOU look like a chicken!’…and he was quiet after that.”
Aaron is a pre-teen whose younger brother, Brett, has Asperger Syndrome.
“He’ll hit his head on the ground and he’ll kick the drawers and he’ll kick his door and he’ll hit his walls and throw stuff around the room…”
“…my mom, she described a storm, like a thunderstorm when it’s really loud…and it’s scary…that’s how your brother or sister can be…”
“I’ve learned to either leave him alone for about ten minutes, or you can try and calm him down, but most of the time I leave him alone for ten minutes or so…and the storm will go away and he’s normal and it’ll be a normal day.”
“Brett is good at basketball and making jokes…I like Brett’s funniness.”
Laura is a teenager whose younger sister, Annie, has Asperger Syndrome.
“My sister’s really good at keeping up with the weather…she’s always watching The Weather Channel – so she knows what to wear. It’s really great in the family, she always knows what the temperature will be and if the sun will be shining.”
“When she comes home crying because of something one of her friends said to her, I’ll try to give her advice about dealing with other people, and most of the time she doesn’t want to take that advice. My mom will just kind of pull her aside and say, ‘Annie, your sister’s been through this, so listen to what she has to say.’ And then she does.”
“We went to family therapy for about a year, then we stopped going about six months ago because things had gotten so much better. The sessions were mostly based on how to deal with Annie, and the fact that she is different from other people, and I’d never really heard that before. I just thought she was an annoying little sister who had this thing, but I didn’t realize it was such a big part of her life.”
Ryan is a college student whose younger brother, Josh, has Asperger Syndrome.
“Josh, a lot of the time is to himself. He’s off to the side, he likes to be in his own little world. And he’s got kind of…I want to say, a downward pull, he wants to think that everyone wants to threaten him. For the longest time I’d yell at him because I’d say, ‘Stop crying, why are you crying? There’s no need to cry. I didn’t say anything!’ But to him, it’s a threat if you say something and…he can’t control the way he feels…”
“…when he needs his time, you give him his time. And when he’s ready to come out and be social again, then he’ll come out.”
“And I try my best to introduce him to all the people that I know so he doesn’t feel uncomfortable and alone.”
“…when he’s doing something that he wants to learn about or that he’s interested in or that I’ve done, he’s extraordinarily lively. He’s very happy. And that’s when he gets to his loud stages where he’ll laugh and he’s way up there. I love to see him laugh, but when something is funny he is, horrendously loud, he’s over the top… sometimes I’ll take his hand and I’ll give him a little squeeze on the hand and that’s kind of his cue to kind of like ease it down a little bit.”
“Josh is amazing at directions… he can give directions to anybody to anything, if you are anywhere in the US, he’ll tell you where you are…I get lost all the time, directions are not my thing and…I’ll call Josh, now...when like, I’m out on the road….I’m like “Josh, I don’t know where I’m at” and he’ll say like, ‘What’s around you?” and I’ll tell him and he’ll know exactly where I am. It’s really cool.”
Ken and his wife have two teenagers, a son and a daughter. Their son, Ryan, has Asperger Syndrome.
“…There will be a huge amount of ups and downs…but…eleven years after the diagnosis, our child has greatly exceeded the expectations that not only we had, but that any of the medical professionals had at the time…in my opinion there’s a huge amount of light at the end of the tunnel.”
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In addition to the video about focused on Asperger Syndrome, we made a similar video in which we interviewed siblings of brothers and sisters on the broader autism spectrum. Like the siblings in the Asperger Syndrome program, they had their own frustrations, coping mechanisms, and special insights.
One of the comments I particularly remember came from eight year old Jaqueline, explaining her younger brother’s lack of speech skills: “He doesn’t really know how to talk that much, but I’m sure he’s saying something in his mind.”
Sometimes being a sibling helps you develop an empathy that no other relationship can match.
ABOUT THE AUTHOR – Dan Coulter is the producer of the DVDs, “Understanding Brothers and Sisters with Asperger Syndrome” and "Understanding Brothers and Sisters on the Autism Spectrum." You can find more articles and information on his website: coultervideo.com.
Copyright 2014 Dan Coulter Used by Permission. All Rights Reserved.