Like other people, those with Asperger’s Syndrome are often creative, intelligent, interesting, productive and learned in countless ways. They are often kind, warm, gracious, loving, funny and enjoyable. And like everyone, AS people have their share of hardship, their share of disappointment and dismay. It can be harrowing to see life through surreal lenses that warp and tangle and convolute the most simplest of activities; activities that the neurologically typical consider ordinary, things like shopping and driving and studying and keeping a job and paying bills and visiting with friends. It can be sad to find that no matter how deeply committed the effort, tenuous results may be all that follow. It can be demeaning continuously having to ask strangers for help, friends for support and family for guidance. It can be lonely living in a place so foreign to too many.
Yet, no matter the hardships, I do not wish for a cure to Asperger’s Syndrome. What I wish for, is a cure for the common ill that pervades too many lives; the ill that makes people compare themselves to a normal that is measured in terms of perfect and absolute standards, most of which are impossible for anyone to reach. I think it would be far more productive and so much more satisfying to live according to a new set of ideals that are anchored in far more subjective criteria, the fluid and the affective domains of life, the stuff of wonder… curiosity… creativity… invention… originality. Perhaps then, we will all find peace and joy in one another.
Appendix I
Explaining Who You Are to Those Who Care
Debate rages among those in the Asperger’s community whether or not people with AS should tell the world about their challenges and idiosyncrasies. Those who choose to keep their AS private can often find creative ways to work through the social norms and educational systems that surround their lives. But for many, particularly those who are profoundly affected, it might be more effective to educate others about the disorder both in general terms and as it applies to their own situation. Whether or not you make the decision to tell everyone or anyone about your Asperger’s is a matter of personal preference. However, the odds are high that there will come a time when at least a small circle of friends, family members, educators and physicians will have to be told, if you are going to receive the advocacy and support you will need to embrace the world comfortably. If the time comes for sharing AS with others, consider the following items as guidelines for discussion.
The potential benefits of sharing
Personally, I believe in full disclosure. I have never hesitated to tell anyone and everyone as much as I know about AS, particularly as it affects my life today. I have convinced myself that people cannot possibly react to me in ways that are valid and real, if they do not first understand the hows and whys of my thinking and acting. For instance, on the surface I am quite sure I can appear edgy, pushy, and much like the prodigal nonconformist, while in reality, down in my heart where it really counts, I try my best to be kind and decent. It is just that sometimes my best is not easily recognized by the outside world.
I see my peculiarities as static that interferes with others’ ability properly and accurately to tune into what I am trying to communicate. When I tell all I can about that static, I do much to erase its effects, leaving the real me to surface as best it can. I think my telling lets me stand a better chance of making a positive connection with everyone around me, be they strangers in a store or my closest friends and family members.
Specifically, any number of. the following reasons might suffice as reason enough to disclose. I rather think there are countless more I have not thought of.
1. You will not have to be as concerned with concealing stiming, ticking, sensitivity to sensory input, social confusion, and other AS traits, when you are around those who know, because you will know they realize those actions are often part of AS behavior and, therefore, nothing to take exception to.
2. Once others have been told about AS, they can become more capable and aware resource and support people.
3. The sooner the general public comes to realize what AS is and how it manifests itself, the sooner AS will meet with broader acceptance and understanding.
4. Perhaps when people know you have AS, they will be more supportive if you choose not to volunteer for certain projects that would be too challenging, for example working as a teacher’s aide or speaking on behalf of a group in a public forum.
5. Friends may learn not to expect you to befriend them as they might have otherwise expected.
6. When you explain AS to others, you might help them to identify AS in other people they know who have yet to be diagnosed.
7. Through educating others and sharing the issues of AS, the chances are you will come to really enjoy and appreciate who you are, no matter how different you may be.
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 discov
ered 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:
1. Those who need to know
(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.
2. Those who might not need to know
(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».
5. Keep AS reference materials visible in your home to entice visitors to read them.
6. Send the names of the people you want to educate to regional and national organizations that provide informative newsletters and or magazines.
7. Devise a list that specifically describes many, if not all, of the things you do which can be attributed to AS. For instance you might list some of the following: I am easily agitated in large crowds; I tend to get too close to people when I talk to them; I like to rub other people’s heads; When you frown, I do not know if you are sad or angry or lonely. Include as many symptoms as you can so that people are not tempted to dismiss your concerns and tell you everyone has those difficulties; the sheer number of your challenges will convince them that you have more issues to deal with than most people do.
Appendix II
Survival Skills for AS College Students
I have heard several speakers at AS conferences say that universities are filled with AS types. With a great big grin on my face, I applaud that sentiment. With a strong support system and a healthy interest in a field of study, those with Asperger’s will often find they have just what it takes to make their college years a wonderful experience. Where else but in college can you obsess on your interests and get rewarded for doing so? In what other setting could you create your own sense of style and convention without looking like you missed the point? What other environment would allow you to talk to everyone you see, no one at all, or even yourself, without missing a beat? In other words, where else could you bang your own drum so loudly? No where else that I know.
In truth, going to college is a big step forward for anyone. To be certain it never becomes a giant push backward, you should choose a college that offers a variety of programs and resources designed to meet your special needs. This implies that you will have to tell at least a few people at your college about your AS. Most likely, that list will include most of your professors, a guidance counselor, an administrator who has the power to design your curriculum and course schedules, and possibly someone in your housing unit (unless of course you make the choice to live alone). Use the following list to help you decide which kinds of support systems you might wish to seek when you begin looking for the college/university you think you could attend.
Support systems for social impairment
1. Help improving your social skills
(a) Classes in speech communications, sociology, psychology and dramatic arts programs give those with AS a wonderful opportunity to learn more about social skills, albeit on an academic level. I am convinced I learned most of what I now know about social skills because of the many hours I spent in courses such as Interpersonal Communications, Intrapersonal Communications, Nonverbal Communications, Voice and Articulation, Mass Communications, Oral Interpretation of Literature, Acting, Social Psychology, Child Psychology, Psychology for Special Education, Sociology and General Psychology. Somehow, I was able to dissect the nuances of human behavior far more effectively when I was a student studying it as a science than when I was an individual trying to figure it all out through experience and intuition. If asked, I would recommend AS students enroll in as many of these courses as they can, realizing, however, that it might be wise to enroll in some of them as a listener and not as a student working toward a grade. Some of the courses require a great deal of intrinsic knowledge that if missing because of the AS, would make it hard to master the material in the short t
ime a course typically provides.
(b) Ask your counselor if the university has, or could establish, a friendship group for people with AS and related syndromes.
(c) Ask your counselor to help you find career placement workshops that would teach you how to interview for jobs, write a positive and strong resume, dress in a professional manner and discuss your AS with a future employer.
(d) Try to establish a «safe» place on campus where you can go to relax and re-group, perhaps something like a corner of a quiet study hall, a remote area of the library, a park bench in a campus garden or a special exhibits room in the university’s museum.
2. Help establishing relationships with peers
Everyone with Asperger’s Syndrome realizes it can be very difficult to establish close friendships. However, college life affords unique opportunities to make a variety of casual friendships all of which can serve to make the college experience more pleasant and successful. An empathetic college will provide many opportunities for students to meet one another by promoting special interest groups across campus. Ask your guidance counselor to help you find a group made up of people who share your interests or hobbies and then do what you can to make a friend or two from among that group. If your social skills are markedly weak, you might share this information with your counselor who could possibly help you establish a friendship with another student who has volunteered to act as a peer tutor or mentor who would help other students find their way around campus, study, car pool, shop for necessities, find research materials, fill out important registration and information forms, etc.
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