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We are a listserv for families of individuals with Aspergers Syndrome
ANNOUNCEMENT!!!
We no longer meet in person. Our group has joined together with ASA York for our meetings. Please visit www.autismyork.org for meeting information
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 is the writer/producer of the INTRICATE MINDS videos that help students understand and accept classmates with Asperger Syndrome and other differences. You can read more articles on his website at: www.coultervideo.com.
Copyright 2006 Dan Coulter All Rights Reserved. Used by Permission.
Sending Clear Signals
By Dan Coulter
My son is a careful driver. He uses his turn signals and appreciates other drivers who do the same -- especially when he sees folks who don’t. I appreciate products I have to assemble that come with clear instructions -- because I’ve wrestled with some that didn’t. I also appreciate callers who leave clear answering machine messages -- because I’ve had voicemail where callers rattled off a phone number so fast I couldn’t understand it. I didn’t feel kindly as I replayed the message again and again trying to catch the call-back number.
I believe most of these communications transgressions aren’t intentional. I think most happen when someone is in a hurry or distracted and absent-mindedly assumes that someone else knows what he thinks or intends.
Communicating poorly seems so obviously wrong and annoying when someone does it to us -- and so innocent when we do it to others.
Like my son, I’m in the habit of using my turn signals, but there have been plenty of times when I could have communicated my thoughts more clearly.
It’s easy to assume that you’re communicating effectively when you’re not. Say you’re talking to a coworker about something your boss did, then you change the subject and start talking about a customer. After a while you get another sudden thought about your boss and say, “He really should have told us before he switched the schedule.” Your coworker is confused because he thinks you’re still talking about the customer. He didn’t follow your mental process as it switched back to the earlier conversation.
Sometimes the problem is familiarity. I remember my wife complaining that she couldn’t understand the instructions from workers at the department of motor vehicles where we used to live. After giving the same directions to people in line thousands of times, the workers rushed through them and ran their words together.
In one of my corporate jobs, our department bought a computer-controlled multi-media presentation system. The day we were scheduled to learn to use it, the trainer called in sick and they sent a sales person to fill in. As a teacher, he was a disaster. He ran through the instructions so fast that none of us could keep up. Then he got impatient because we weren’t absorbing his information barrage. He knew the complex system inside and out, so its operation was obvious to him. He thought we just weren’t listening hard enough.
As parents and teachers, we need to be careful not to make these mistakes with our kids and students. I’ve spent more than two decades in communications-related jobs, and I learned early that success isn’t measured by what you do or say, but by what your audience absorbs.
With a new school year starting, parents can clearly communicate to kids that you have high expectations and that you’re available to help them succeed. You can follow this up by helping your student get into the habit of having homework done before bedtime, setting out clothes, organizing backpacks and gym bags, and making other preparations. Of course, your focus should always be on helping your child take on these responsibilities himself. You also want to communicate to teachers that you take an active part in your child’s education and that you need to hear promptly if there are any problems that your child needs to address -- or any opportunities that might enhance his school year.
Teachers need to communicate their expectations to students and be clear about the kind of work and quality of work it will take to excel. It also helps to let students know how to ask for help if they’re having trouble with the coursework -- especially in ways that won’t embarrass them in front of other students. Always posting assignments in the same place, handing out written instructions and posting assignments on a school website are good options to ensure students know what work to do and by what deadline. By providing clear expectations and instructions, you’re serving as an excellent role model for them to follow when it’s their turn to communicate.
When it comes to the nuts and bolts of communicating, here are some “best practice” tips I’ve picked up over the years that can help get a message across whether you’re trying to connect with one person or a thousand.
THINK BEFORE YOU SPEAK. What does the person you’re talking to know about what you’re going to say? Is he familiar with it, or is the subject new to him? This will help you choose your words.
START WITH A HEADLINE. Headlines are designed to tell readers as much as possible about a story in the fewest possible words. Starting with a headline helps your listeners mentally prepare to absorb what you’re going to say. For example, your headline might be: “Mom and Son Make List to Shop for School Supplies.” Next you translate your headline into real language and say to your son, “We need to go shopping for school supplies today. Let’s make a list of what you’ll need.” This communicates your plans for the day much more clearly than musing aloud, “You can probably use last year’s binders, but we need to get you some paper refills...”
USE INVERTED PYRAMID STYLE. This is a technique journalism students learn early. Basically, it means you put the most important information at the top of your story and the least important information at the bottom. That way, if someone only reads a part of the story -- or if an editor cuts off part of your article, the readers still get the information they need most. When you’re giving instructions, whoever you’re talking to gets the same benefit if the first words out of your mouth cover the key points you want to make.
There are exceptions to this rule. For example, you may want to build suspense and then surprise your listeners for effect. But in most cases, your audience will appreciate your giving them the big picture and then filling in the details.
TREAT YOUR AUDIENCE AS CUSTOMERS. Thinking of your audience as customers can help you keep them interested by meeting their needs. Consider what they want -- and use it. Trying to convince teenagers to use good grooming? Appealing to their need to impress the opposite sex is usually a good tactic.
BREAK OUT OF YOUR RUT. If you routinely give the same instructions or information, it’s hard to maintain your enthusiasm. Look for new words, or new methods, to deliver the goods. Finding fresh ways to communicate helps keep you energized and makes your audience more receptive.
BE CONCISE. It’s easy to lose an audience. Saying what you have to say in as few words as possible can help you stay within listeners’ attention spans and help them remember what you’ve said.
SEEK FEEDBACK. Watching faces while you talk or asking your audience for questions can help you make sure you’re not wasting their time -- or yours.
ENCOURGE NOTE TAKING. If your message or instructions are long or complicated, taking notes can help your audience lock what they hear or see into their memories. People have better recall after they take notes, even if they never look back at what they’ve written.
To sum up, the next time you’re about to communicate, put yourself in the position of the person or group that you’re trying to reach and think,
- What do I really need to get across?
- How would I like to get this information?
- How can I be interesting, clear and concise?
As for turn signals, try thinking about how well drivers are communicating every time you see them using or neglecting their turn indicators.
Effective communications are always worth an extra thought.
ABOUT THE AUTHOR: Dan Coulter is the writer/producer of the video, "Manners for the Real World: Basic Social Skills" and other educational products. You can read more of his articles on his website at: www.coultervideo.com.
