By Dan Coulter
We’ve crossed the finish line!
Our DVD to help brothers and sisters understand siblings with Asperger Syndrome is complete. My wife, Julie, and I interviewed children and adults from sixteen families. While we heard a lot about difficulties and challenges, we also heard a lot of optimism.
This may have been because families who are willing to share their lives in a video about Asperger Syndrome are probably among the most dedicated in dealing with AS. We’ve found that the more active a family is in educating itself and others and advocating for a family member with AS, the more results they see. You’re more likely to be optimistic when you’ve seen things get better. Particularly if you helped make them better yourself.
We made this DVD so brothers and sisters could learn from the mistakes and successes of others who have siblings with AS. We divided it into different programs to fit the way siblings absorb information at different ages and developmental levels.
The siblings in the video 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 sibling’s strengths.
I remember a line I heard guitar player Leo Kottke use in a concert, about musicians building on each other’s work: “Brilliance borrows, but genius steals.” Whether you get ideas from a DVD 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 some quotes from the DVD’s interviews with some 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 teen-ager 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 times 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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The great thing about making this sort of video is that in researching approaches that can help other families, my wife and I get access to a lot ideas our family can use to support our own son with Asperger Syndrome. But we don’t feel guilty.
We’re just doing the “genius steals” thing ourselves.
Speaking of which, we’d like to thank Dr. Sandra Harris, co-author of, “Siblings of Children with Autism: A Guide for Families” and Lori Shery, President of ASPEN, for providing input to the “brothers and sisters” Asperger Syndrome DVD.
We were delighted to access their expertise.
Because we’re all in this together.
ABOUT THE AUTHOR – Dan Coulter is the producer of the DVD, “Understanding Brothers and Sisters with Asperger Syndrome.” You can find more articles on his website: coultervideo.com.
Copyright 2007 Dan Coulter Used by Permission. All Rights Reserved.