Disclosure and Self-Understanding
So the diagnosis has been made. Now what? Once you obtain an Asperger's Syndrome diagnosis for your child, you are faced with another significant hurdle: disclosure. With the advent of diagnosis, you will likely be required to interact with others — family, friends, neighbors, doctors, and educators — for the purpose of discussing the diagnosis. You will need to use discretion with disclosure. Please be mindful of being careless of when, how, and with whom you share information, especially if it occurs in your child's presence. Remember, you're talking about a child, and the child is not defined by the diagnosis. Always remember the concept of the self-fulfilling prophecy. If your child overhears you discussing the diagnosis more often than her gifts and talents and her amazing way of being in the world, she will likely become defined by the diagnosis exclusively. When you appear comfortable readily disclosing sensitive information, you model this behavior for others who think it perfectly acceptable or necessary. And so begins an otherwise avoidable downward, perpetual spiral.
As early as possible, empower your child as the keeper of information. As a parent, you will know best when, where, how, and under what circumstances you broach a discussion about Asperger's Syndrome with your child. As with any sensitive discussion, you will want to:
Follow your child's lead by sharing as much or as little information as needed.
Balance the discussion by highlighting everything you love about your child.
Underscore that the diagnosis is just a name — nothing else has changed.
Be prepared to answer any questions your child may have.
Give your child the opportunity to write, draw, or otherwise make concrete the information as she envisions it.
Talk about disclosure as the concept of being choosy or very selective about when, where, and with whom personal information is shared.
Regardless of your child's age, she is now your partner in all matters of disclosure. This is the respectful response to supporting the child with Asperger's Syndrome. This means that prior to arbitrarily sharing personal information about your child's diagnosis, you check with her first to:
Ask permission to disclose.
Explain why you believe it is necessary.
Be open to being flexible if she protests.
Offer opportunity for compromise.
Discuss the best, most gentle, most respectful way to disclose the information.
One mother lamented that her child's psychiatrist expects her to disclose sensitive information in front of him, even though her son implores, “No mom, don't! It's embarrassing!” First, how very fortunate she is that her son is self-aware enough to be a good self-advocate at his young age. There are ways to privately share information that doctors and others require. For example, information may be faxed, mailed, or e-mailed in advance of appointments instead of openly discussing the most humiliating aspects of one's “perceived” behavior so publicly.
There is power in numbers. If you can establish relationships with other parents, caregivers, and teens and adults with Asperger's Syndrome who are also self-advocates, you can advance the respectful concept of “nothing about me without me.” This means that, in a variety of professional and community-based environments, your child has the right to be involved and contribute to all discussions thus creating positive change in how Asperger's is perceived and discussed by others.
Of her son's control over disclosure, Linda says, “I do not need or have to explain my son's overreactions in a public place. It is really no one's business. I let my son choose whom he tells. Which, as a matter of fact, is practically no one.”
Rather than setting aside time for your child to single herself out and reveal her way of being with the entire school class, you may wish to encourage a classwide discussion of all the students' collective differences and similarities during which your child shares as much or as little as she wishes.
Still, others do select to disclose information as a personal choice. Bonnie's son Noel wrote a wonderful letter to his classmates. It is a lovely way to conclude this chapter and Noel has given permission for others to use his letter to adapt for their own use.
I have Asperger's Syndrome, which is on the high end of the autistic spectrum. This means that I experience the world very differently than you do.
You're called “neurologically typical,” or “NT,” because you don't have ASD. Please don't call me “abnormal” or refer to the other kids as being “normal,” because you all seem pretty abnormal to me. I am just not typical because I am wired differently. I like my differences. They give me abilities that most NT's don't have.
Being with lots of people and having conversations that interest you and not me are two things I work very hard at. I don't mean to seem rude when I turn the conversation to my interest. If this is getting in the way, you can tell me that we need to switch topics for a while. I learn best when you relate what you are trying to teach me to one of my interests. I know this might seem strange, but this is just the way people with an autistic experience are. Relating information to my interests enables me to keep track of many details.
Social skills do not come naturally to me, so I try to keep learning. I usually like to be around adults more than kids, because they are more interesting. I prefer facts over opinions and feelings.
Remember that I don't automatically understand what is going on in terms of verbal and nonverbal communication. People don't always say what they mean, and they use metaphors or a lot of words to say something. This is not how I communicate. I appreciate it when people notice when something doesn't make sense to me and reword it so that I know what they mean. I may not understand what seems very clear to you. Or I may seem rude — although I don't mean to — in the way I speak because I tend to be very direct. Please have patience with me, and explain clearly to me when my way of relating might cause a problem.
Comments like, “Change your attitude” don't help me much. But if you tell me what behavior is bothering you, then I can understand.
Relating to other people is hard work for me. Like other people with autism, I like to have friends, but I also like to be by myself. It is very important that I am allowed to have some “alone time,” especially during the times when I am with other people. I try hard to think of other people's feelings and make eye contact, but this doesn't come naturally to me. So could you have a little patience if I come off sounding rude, and explain to me clearly how I could do it better? As long as I am in the mood for it, I try to fit in around people. But this can really wear me out.
Sometimes my thoughts come rushing into my head like an avalanche. I'm not sure which one to hold on to, and I might pick the wrong one, which might make you mad.
This happens especially in the morning and at night. If I seem distracted, you can help by giving me only two or three instructions at a time. When this happens, it's better if you come close to me to tell me rather than call to me across the room. Be clear, and remember that my visual and tactile senses are strong, so maybe you can use this to help me. At home I use a lot of pictures and lists to help keep me focused. Remember, I am trying to do my best.
Most people can think of these five senses: hearing, sight, taste, smell, and touch. Did you know that balance and motion are senses, too? My senses often work pretty differently than yours do.
For example, high-pitched and loud sounds, like the singing at church or a vacuum cleaner, really hurt my ears and can be unbearable. I try to have earplugs with me because this helps. Sometimes I'm asked to talk to audiences and they want to clap to show their appreciation. For me it would be better if you would just pat your arm. Thank you.
Like most people with ASD, I tend to think in pictures. I like bright colors like red and orange. If you want me to remember something, it helps if you can show it to me visually. I like to create pictures, watch cartoons, develop visuals on my PC, and play video games.
I don't eat much, and the food has to be mild. Vanilla milk-shakes and pumpkin pie are my favorite foods. I like crunchy foods too, like cereal and carrots. When I get thirsty, this sense can be very strong, so I have learned to carry water with me. When I feel stressed or anxious, I've learned that it helps to drink through a straw or eat cereal. Pretty cool, huh?
Tied in with taste is the sense of smell. Strong smells can make me feel sick. Please don't make me eat foods “to be like everyone else,” but also, my mom says I should eat as much as I can, and whenever I can when I am in the mood to eat. Touch, balance, and motion are three senses that really help me when I feel anxious or uncomfortable. A firm touch from you or a place to swing can really help. Sometimes I hang my head upside down or squeeze a ball when the feeling of people around me is too overwhelming.
Change can be hard for people with autism. Some warning or explanation before a new activity helps me a lot. Also, transitions are easier if I am given the schedule ahead of time. It helps me to have it written down so that I can see it.
Time is a strange concept for me. When I'm bored, time seems to go by twice as slow as a snail. But when I am doing something I like, it goes twice as fast as a cheetah. Try to understand that I don't experience time the same way you do.
Someday I hope to use my knowledge and abilities to invent things that will really help people. Did you know that people like Albert Einstein, Thomas Jefferson, and Marie Curie had Asperger's? Many people think that Bill Gates does, too. I hope to be the next in line of these great scientists and thinkers.
Sometimes I get frustrated because I have to work so hard to fit in and conform to your way of being. But I like myself. God has been good to me by giving me a nice family and letting me be smart. I hope that what I do in the future with my special gifts benefits you someday.
Thank you for your patience and for taking the time to read this. I hope you will be my friend.