Sharing information about your child with neighbors, acquaintances, or total strangers in your community is no different than the process of determining when, where, and how to share the same information with family. Weigh carefully the drawbacks and positives that may come from sharing this information. It is an issue of disclosure that you should discuss in advance with your child in order to be as considerate and respectful of his feelings as possible. As before, ideally, your child should be encouraged to be his own advocate as early as possible in order to decide how much or how little to tell others about his way of being, if it's even necessary at all.
Some parents find themselves exasperated and embarrassed by their child's public meltdowns. They may garner stares, raised eyebrows, whispers, or flat-out denouncements of “Why can't you control your child?” There are those who decide to forgo discretion and bluntly address gawking onlookers by revealing their child's diagnosis right there, on the spot. They may pass out “For Your Information” business-size cards that state, “My child has Asperger's Syndrome and this is what you might see,” followed by a list of meltdown behaviors or behaviors others may find quite peculiar. The mother of one young girl explained her daughter's prolonged staring at a neighbor exclusively in terms of her Asperger's Syndrome.
You may find yourself in the position of these parents who want to educate others and simply want a little patience and understanding in the moment. But are you best serving your child by revealing such intimate information, or are you fueling misperceptions and stereotypes — especially if you explain “This is Asperger's Syndrome” — at the height of your child's public meltdown? Aren't you, in effect, sending a message to the community that “This is what Asperger's Syndrome looks like”? You know Asperger's Syndrome encompasses many things, and your child's inability to endure certain environmental stimuli is but one sliver of who he is as a human being. Think of the impressions people take away with them after being told, “This is Asperger's Syndrome.” Would you want to be regarded in this way when you know you aren't at your best and you're coping the best way you know how?
Gradually you'll learn (through trial and error) the situations and environments not conducive to your child's sensitivities. Be careful of sharing too much personal information during public meltdowns. Contain meltdowns as quickly and concisely as possible (easier said than done, as this is what you'd wish for any of your children). Remember to ask yourself if you would be willing to offer strangers the same information about yourself.
As one mom asked, “Isn't it okay to express your anger, upset, and disappointment to your child for the way she behaved?” We're all human, and as the parent of a child with a different way of being, nerves will fray and are bound to wear thin. In these times, you would vent your frustration to any of your children. Bottom line is, parents can “lose” it from time to time, but before expressing your extreme dissatisfaction with your child's conduct, ask yourself:
Am I being fair?
Am I making this an issue about Asperger's?
Am I disclosing information publicly out of anger?
Have I been clear in giving my child concrete, visual information in advance about my expectations?
If you believe you've been fair, then remember to focus on addressing your child's behavior in the community as inappropriate to the environment, instead of making it about Asperger's Syndrome. The mom who “outed” her daughter when she stared at a neighbor too long had the best solution of all. She decided that, next time, she would simply point out that her daughter appreciated the diversity of people's faces, jewelry, and clothing. Another mom felt ashamed when her young son approached strangers to randomly discuss dinosaurs in minute detail but, instead of revealing his diagnosis, she explained her son's unconventional approach by simply saying, “He really loves dinosaurs.” Both moms were delighted with the way their positive “spin” created an opportunity for relationship building.