Autism, Asperger Syndrome and
Siblings
By Dan Coulter
During the past seven months, my wife and I have met an amazing
group of people.
In producing two videos about brothers and sisters of kids on the
autism spectrum, we’ve conducted 57 interviews with siblings and
parents.
People were incredibly open about their lives. About their hopes,
fears, and challenges. Most of all, about the ways they’ve found to
make things better for their families. We went into these videos
looking for “best practices” about siblings that we could share with
other families. We got that and more.
Working on these programs has kept me from writing articles as often
as I’d like, so I thought I’d take a break from editing and share a
few comments from our interviews.
One of the videos covers the autism spectrum and the other focuses
on Asperger Syndrome. The programs are divided into segments to
appeal to siblings of different ages. These quotes are from the
autism program’s segment for seven to eleven year olds, which I
happen to be working on today.
Let’s start with Alex, a wonderfully patient eight year old whose
younger twin sisters with autism used to bite the tails off his
dinosaurs and stomp on his Lego space ship, until he learned to put
his toys away where his sisters couldn’t find them:
“Sometimes when we go in the car, I have to watch my sisters’
movies, and it’s Barney, Wiggles or Teletubbies, …really little kid
shows...but I have to watch it…because that’s what you have to do
when you have autistic sisters or brothers. “
“Sometimes my sisters cry at restaurants so my mom or dad has to
take them out to the car, but if they keep crying, sometimes we have
to leave. So don’t get mad at that if they do that, because it’s
still just natural, because they haven’t learned how to behave very
well.”
“My sisters learn to do things from me because they watch me. Like
when I brush my teeth, they usually find a little toothbrush and
they use it and they try to do it and it’s making their teeth clean
because they’re starting to brush their teeth more often…”
“When Eliz and I are on the trampoline, we usually like to jump in
the middle, but I like to bounce her…and she goes to the side and I
bounce her and she laughs even more…and Emily likes that, too.”
“Emily and Elizabeth have begun to ask me for help when they can’t
get anything or need to know how to get it or do something…they grab
my hand and pull me to where they need to go.”
“I say, ‘Elizabeth, say cracker’ or ‘Emily, say marshmallow.’ But I
just keep saying it like that and they learn how to say it.”
“…if they want to sit down and there’s nothing there, sometimes they
come and get you and they make you sit and they sit in your lap. So
don’t get really mad at that, that’s just natural.”
You’ve got to be pretty understanding to be willing to serve as an
impromptu folding chair for your sisters. We interviewed Alex’s mom,
too. So we could at least partly see where he got his great
attitude. After these interviews, we could almost hear mom’s voice
gently counseling, “That’s just natural.”
Make no mistake, not every child we interviewed was as patient as
Alex, but they all had their strengths, and many had adapted to meet
their siblings’ needs.
Here’s what Jacqueline said about learning to deal with her
brother’s meltdowns:
“Actually, nothing helps unless I do something funny. Sometimes I do
funny faces or sometimes I just act silly, like run around the
house…and he laughs.”
DeP, whose brother is very high functioning and is “better at math
than my mom and knows more about chemistry than my dad” had another
approach:
“When he tries to take it out on me, my mom steps in. Then my dog
comes in and she has this cute little face. She helps out my brother
a lot. Then I just pick her up and give her to Cass. And he just
holds her.”
Other kids help their siblings communicate, Like Elianah:
“When he says something and the person that he’s talking to doesn’t
understand him, I can understand him so I tell the person that
Jaeden’s talking to what he’s saying.”
Or Jonathan:
“I speak sign language to Kevin because that’s the easiest way to
communicate with him.”
DeP also was one of the kids who explained how their relationships
had improved,
“I get along with him a lot better than I used to when I was about
six or seven. We used to fight a lot back then, but now, we help
each other out and we’re pretty much tight brothers.”
It was also great to hear kids bragging about their siblings, like
Briceño, whose family discovered that his younger brother, who
couldn’t speak, had suddenly begun using one of his toys as a
writing tool.
“Recinto’s strengths – he’s really good – at his last birthday there
was just a big explosion. He loves to write letters on the little
Magna Doodle thing and he’s really good at that.”
During our interviews, we found out a lot about how siblings learned
to get along with their brothers and sisters and what parents tried
that worked and didn’t work. We heard about a range of issues,
including kids often feeling that their siblings on the spectrum got
more attention from mom and dad.
One quick insight. The families that seemed to be dealing best with
autism or Asperger Syndrome made an effort to communicate early and
often. It turns out many parents tend to think their kids know more
about these conditions than they actually do. You might want to test
this with your own kids. Sit down with them and talk. Explain why
you’re doing what you’re doing. Ask them how they feel about things.
You may get some input you can use to make things better in your
family.
Well, I’m going back to editing videos. I may share more input from
the interviews in the next few weeks. This project is sort of my
world right now.
With all the help kids need from their parents understanding autism
or Asperger Syndrome, you can’t help but be impressed with some of
the insights they come up with on their own. Like Jacqueline,
explaining her 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.”
Wow.
ABOUT THE AUTHOR – Dan Coulter plans to release, “Understanding
Brothers and Sisters on the Autism Spectrum,” in April, 2007 and
“Understanding Brothers and Sisters with Asperger Syndrome” in May,
2007. You can find more articles on his website at
www.coultervideo.com.
Copyright 2007 Dan Coulter All Rights
Reserved. Used by Permission.
