The risks involved with sharing
Despite my belief in full disclosure, I will admit there are many times I wish I had never even mentioned the words, «Asperger’s Syndrome». I have met with some very real prejudices and some very painful misunderstandings on several occasions when I have tried to explain to strangers, friends and even family members, what life with AS is like. I wish I could say I understood their reluctance to be open, empathetic and caring, for if I did, I would find peace. But, I cannot. I fill with anger each time I recall the reactions that have left me cold, frustrated, furious, embarrassed or worse, ashamed of who I am. Still, as an educator, a mother and a person affected by AS, I believe it is best for me to tell people what I can about AS for, in so doing, I hope to dispel the notion that we are in any way less capable or less deserving.
In order to ease the negative consequences that follow disclosure, I have formulated a few coping plans I try to rely on when need be. Simply put, I feel I can react in one of four ways, depending on who I am speaking to and on how deeply I have been upset. For instance, I find that the better I know the person, the easier it is for me to be devastatingly angered by their negative response. In comparison, I expect little empathy from someone who I think has no vested interest in my well being or no real ability to understand the nuances of AS. With those boundaries in mind, I have decided I can
(a) relax and be patient in the hope that my sharing of information will eventually elicit respect and sensitivity;
(b) put the negative reaction behind me by reminding myself I do not have the power to change the minds of everyone I come into contact with;
(c) keep in mind that anger will do nothing but stand in the way of my self awareness and my progress or
(d) choose to disassociate myself from the person I am trying to express myself and AS to.
No matter how I choose to deal with the opinions of those I discuss AS with, I try very hard to convince myself that the benefits of sharing are well worth the costs. I tell myself that no matter what happens, I am ultimately in control of how I will react to those who meet my good intentions with their own rude behavior or misguided words.
If you decide to share what you know about AS, be prepared to face the following kinds of scenarios.
1. Because AS is often so very subtle to the casual observer, people may assume there is really nothing inherently challenging, but rather that those involved are simply using the latest psychobabble as a way to make excuses for behavior that might be considered generally unacceptable.
2. Once people learn all that is involved with AS, they may consciously decide to exclude you from their social gatherings, clubs, committees, employment and other group-oriented situations.
3. After sharing the information, people may mistakenly think you are «just like» those with more mild or more severe neurologically or psychologically based developmental disorders, therefore confusing the issues and not offering the right kinds of treatment, support and expectations.
4. Once you realize others know, you may be tempted to withdraw from society, suddenly feeling too exposed and vulnerable to others’ criticism and stares.
Deciding who to tell and how to tell them
When I first discovered the key to my differences could be found in AS, I told virtually everyone I came into contact with as much as I could about AS, as quickly as I could. It was not long before I realized there might be a more satisfactory way of my doing this. Somewhere along the way, I came up with a few different ways to tell different people about my AS, each time depending on the dynamics of our association, how I think they will react to my disclosure and how close our relationship is. Very simply, this generally puts people into one of two groups: those who need to know and those who might not need to know. I never let myself think I will never tell anyone anything. I always keep that option available, in case I need to play it. How you make your distinctions is obviously up to you, but it seems obvious to say that some relationships will depend more on full disclosure than will others. Some in fact, will all but require you to tell at least something about who you are and how AS works with you. If asked, I would define the «needs to know» and the «might not need to know» groups as follows:
(a) People who are in a position of some authority over your actions or future. This group might include your teachers, employers, athletic coaches and even police officers. Without some knowledge of AS, these people will be unlikely to help you meet your needs, but very likely to completely misunderstand your intentions and concerns.
(b) People with who you are developing a strong, trustworthy and deeply important relationship, perhaps a romantic interest, a very close friend, relatives, roommates or co-workers. These close acquaintances need to know a bit or a great deal about AS, if you expect them to appreciate your differences and be empathetic to your idiosyncrasies and overall lifestyle.
Individuals you turn to for advice or support, such as your religious leaders, your counselors, your social workers and your physicians. With AS knowledge in hand, these people will better know which kinds of support to offer you.
(a) Virtual strangers you turn to only when you have to, such as salespeople, food servers, receptionists, administrators or repair people.
(b) People you come into occasional contact with in classrooms, at work, at the gym, in your neighborhood, etc.
(c) Distant relatives or old friends you rarely keep in contact with.
(d) Your children’s teachers, friends, and the parents of their friends.
(e) Strangers you are likely to meet only once, for example people you meet while waiting in line, sitting in a crowded theater or walking on a busy street.
Possible disclosure strategies
Deciding who to tell is sometimes the easiest part of the plan. It is usually more complicated for me to decide how to disclose. Normally, at least one of the following disclosure strategies will prove to be beneficial.
1. Collect and distribute one or two sets of AS research files. In one set of files, collect a variety of reference material that will easily and quickly explain the disorder in layman’s terms. Consider using personal accounts and stories, general pamphlets and brochures, video tapes, and your favorite books on the subject. In a second set of files, kept specifically for those who crave or need more knowledge, add academic journal articles, academic textbook titles and research institutions’ project reports. (See Appendix VI for a list of helpful resources.)
2. Invite those who need to know about AS to a local or regional meeting or conference on autistic spectrum disorders.
3. Using your favorite form of expression — written, spoken, videos, slides, photography, dance, art, etc. — tell your own story of what AS means in your life, even if you are not the person with the diagnosis.
4. Prepare a business card that contains essential information about the syndrome that you can hand out to strangers whose help you might suddenly need. For example mine reads:
«I have Asperger’s Syndrome, a neurobiological disorder that sometimes makes it difficult for me to speak and act calmly and rationally. If I have given you this card, it probably means I think I am acting in a way that might be disturbing to you. In short, Asperger’s Syndrome can make it difficult for me to: speak slowly, refrain from interrupting, control my hand movements and my blinking. It also makes it hard for me to follow your thoughts so that I might misunderstand what you are trying to say or do. It would help me if you would speak calmly and answer any questions I might have, clearly and completely. I apologize if my behaviors seem inappropriate. For more information on Asperger’s Syndrome, please write: ASPEN of America, Inc. P.O. Box 2577, Jacksonville, Florida 32203-2577».