Disclosure: Two Hands-On Examples


Many parents know that disclosure—telling others about their child’s Asperger Syndrome—can help the child better understand and accept him or herself, and become a better self-advocate. It can also help others better accept and support the child (or teen or adult). However, many of us wonder: Where should I begin? What should I say—and what should I avoid saying? Below we offer some practical help from two families who took the plunge—with good results.

“Lucy” and her mother made the presentation below to Lucy’s class in 3rd grade, and again in 4th grade.

Lucy: My mom and I are here to talk with you today about Asperger Syndrome. AS is something I live with every single day of my life. I’ve had it since I was born, but we didn’t know it for sure until I was 5 years old. My parent’s told me about it just before I turned seven. It doesn’t mean I’m stupid, it just means that some things are harder for me. We’re going to talk to you about a couple of those things today.

Mom: What we did know about Lucy was that she was a wonderful, enthusiastic, loving daughter and sister. We also noticed that she was really smart!

How old do you think children are when they usually begin to say words and sentences? [Lucy calls on 1 or 2 kids.]

Lucy was just seven months old when she said her first words, and spoke in sentences when she was just over one year. She even sang happy birthday at her first birthday party. Sometimes people with AS talk very early.

Another thing she did when she was really young was jigsaw puzzles (as big as 24 pieces)—even if she’d never seen them before. We were amazed!

We also noticed was that Lucy had certain things she really, really liked and others that she hated!!

Lucy: I used to love Winnie the Pooh! I knew all the characters, memorized books, and recited them—even as a baby.

People with AS have brains like sponges. What do sponges do? [Lucy calls on kids.]

Mom: Lucy and others with AS can soak up a ton of information about topics they are interested in.

Lucy: These are called special interests. Some of my special interests have been Toy Story, The Emperor’s New Groove, Anne of Green Gables, bionicles and Legos, math, computers, Game Boy, Neopets, Mario Brothers, Harry Potter and puppets. I can overfocus on these and learn almost everything about the topic. Sometimes I focus on them too much and can get stuck on a topic. I bet most of you know what my current special interest is. [Six kids raise their hands.] That’s right: dogs!

Mom: Lucy has learned an incredible amount about dogs. When our family has a question about dogs, we ask Lucy!

Lucy: Often because I’m so interested in dogs, I have a hard time paying attention to topics other people are interested in, or playing games that don’t involve my special interest. It can seem like I’m not a good friend when I don’t want to do what others want to—but it’s just that my mind gets stuck in my own ideas. Sometimes a friendly reminder and a little extra time will make it possible for me to tune in to others’ ideas or games. I can also get stuck when it comes to my school work! In fact, I almost never want to do anything new, and unfortunately almost everything is new! I need time to think about it and get used to the idea—then I can try it.

People with AS also have very sensitive senses. My most sensitive senses are hearing and touch. It feels like dynamite’s exploding when there’s so much noise, especially when a lot of different people talk at one time. My ears can’t focus on one conversation….I hear all of them but can’t pay attention to any! That’s when I might get upset and scream or yell.

Mom: Imagine what that would be like. For you, it might be like having the TV, radio, and CD player on, and a parent talking to you at the same time. What do you think that would be like? [Maybe frustrating, upsetting.] That’s how it is for Lucy sometimes. It would help her if you could all be aware of how hard she has to work to deal with all of that noise. The noise is actually painful to her.

Lucy: I also don’t like to be touched, especially if I don’t expect it—so if someone bumps into me, I can get very upset.

I get upset more than most kids, even about things that might seem like no big deal to somebody else. I’m working really hard to find better ways to react when upsetting things happen, but it’s very hard!

Mom: Who likes surprises? Lucy, do you like surprises?

Lucy: No! It’s really hard for me is when things happen that I don’t expect, or if something is new.

Mom: We didn’t used to understand why, when Lucy got birthday presents, even if they had to do with her special interests, she didn’t like them until she got used to them. For example, once she got a Winnie the Pooh chair and it took her a long time to want to sit in it. Now that she’s older she can handle some unexpected things better, but it’s still best for her to know things in advance.

Lucy: Another thing that’s hard for people with AS is being in groups. I’m not a big group person. It’s hard for me to focus on more than one person, especially if more than one person is talking. I like to be independent. Sometimes it’s a lot easier for me to do my work by myself. That’s why I sometimes go to Ms. O’s room. It’s quieter and less distracting, and I can focus on my work.

Mom: If you think that you have things like the ones we talked about, that does not mean that you have AS. There is a lot more about AS that we didn’t talk about. Everyone has some of the feelings we talked about sometimes—it’s just that with AS, those feelings and reactions are much stronger and harder to control. People with AS tend to be very honest and are also loyal friends.

We’re all different in different ways—such as our race, our religion, or who is in our families. And some people, like people with AS, think differently.

Lucy: There are also lots of things we have in common. We’re all in 4th grade. Like all of you, I want to do my best, follow the rules, and be accepted. I want to have friends and to be a friend. If you want to learn more about AS we can leave this book in the classroom [“Can I Tell You About Asperger Syndrome?” by Jude Welton]. It’s about a boy named Adam who has Asperger Syndrome. Do any of you want to ask a question about Asperger Syndrome now?

9 of Lucy’s 18 classmates asked questions. So many children were interested in borrowing the book that the teacher decided to read it aloud to the whole class the next day!

“Catherine” is 17 years old. She writes:

The first presentation about AS that I ever gave was for my 4th grade class as part of the program now called “Understanding Our Differences.” My mother did a good part of the actual presenting. She took a sieve and poured in a mixture of sand and rocks. The sand slipped through the holes, while the rocks stayed in the sieve. My mom said this demonstrated how the brain works for a person without AS. When processing a given scenario, the brain lets all the unimportant information go and keeps only the important things. She then filled a solid bowl with the sand and rocks, to represent how the brain of a person with AS works. My mom took pinches of sand out to show that the brain does filter out unimportant things, but much more slowly than a neurotypical brain would.

Four years later I did a presentation on my own, for my 8th grade class. Once my peers knew about my AS, they understood a bit more about me and why I do certain things. For example, I would always get upset whenever my team didn’t win the competitive games we played in class. They would tell me things like, “It’s only a game.” I knew that, and it was very embarrassing for me not being able to handle defeat maturely. After my presentation, they stopped reminding me.

One of my most recent presentations was given for my high school faculty. I got up there and did my best. I had a copy of my speech in my hand, so that I could refer to it if I needed to. Also, I relied on my actor’s training. Afterwards, a lot of people told me what a good job I had done. I was grateful for their positive feedback. Below are excerpts from my presentation, which was also printed in the high school newspaper:

You can’t tell by looking at someone if that person has Asperger’s Syndrome. You have to recognize it in his or her behavior patterns.

In all of the cases that I know of, people with AS don’t know how to understand the “social cues” that other people send out. With patience and effort, people with AS can learn to read those social cues. Personally, I think that I can now understand these cues fairly well, but life for me used to be quite different.

When I began middle school, I found that my old friends were beginning to meet new people and try out new friendships. Because of my AS, I had a lot of trouble holding onto my old friendships and trying to forge new ones. My years at middle school were lonely ones…

With nobody for me to tell my problems to, my peers began to seem almost hostile. I remember walking through the hallways of Newton North, always afraid because I assumed that the students I passed were thinking horrible things about me. In the middle of sophomore year, I finally began to get to know some of the other students. My view of Newton North as an unfriendly place gave way to the more true view that it is a place with very friendly people and lots of opportunities, but a really crummy building! I still have trouble making friends, but it’s a lot easier for me now.

I used to find pop quizzes and fire drills very frustrating because I didn’t know when to expect them, but now I can handle them. People might not have been able to figure out by looking at me that I dislike surprises.

Life has been difficult for me because of AS, but it has also been quite enjoyable. I know that AS can be a challenging condition to live with, but I also know that it can have its benefits. Because AS has no visible signs, I don’t have to deal with my peers giving me funny looks. However, I do have to be clear about letting people know what will help me.

Catherine’s parents later received the following note from the high school principal:

Last Tuesday at our faculty meeting your daughter was part of the presentation about special education. She was terrific! She made a speech to the whole faculty, which in itself is a formidable task, and spoke articulately and movingly about her experiences at Newton North. She spoke particularly about having Asperger’s and its effects on her social life. I received many comments from teachers after the meeting about how wonderful the presentation was and how they will now think differently about their teaching. I know you are already proud of Catherine; I will only add that her performance and her presentation at the faculty meeting made us all proud.