In some ways I cannot help but be happy I have found a mostly comfortable place to rest. A point in life that sits balanced between neurologically typical and Asperger’s Syndrome. In other ways, I meet who I am with a certain amount of sadness, for I often wonder what parts of me I had to leave behind before I came to this place in my life. Would I have been a better writer if I had allowed my skewed take on the world to find its way to paper? Was there a wonderfully quirky and surreal book hidden beneath my idiosyncracies that will now never be found because I can bridle so many of my old habits and thinking patterns? If I had not been taught and encouraged to be as social as I now am, would I have found a different but somehow more satisfying kind of individualized lifestyle? Would I have avoided my irritable bowel syndrome and my panic attacks, if I had not tried so hard to pretend to be normal?
Of course, I will never know. But still I do not want to lose sight of these reflections, because they help me to remember that everyone has the right to figure out their own normal, even as they have the right to know, see and touch how things might be if they work hard to control their differences, if they work hard to modulate, if they work hard to follow the commonplace sense of being. And when all the figuring out and reflecting is finished, the point will remain, that everyone should be afforded a great deal of freedom and respect as they choose who and what we will become.
It can be cozy and warm and right living within the walls of autistic spectrum disorders, particularly those that are as pliable as the AS walls, for there is nothing inherently wrong or undesirable about the need to live alone, to embrace eccentricities and quirks and even blunt speech. There is nothing terrible in having a disdain for certain senses and a craving for others. And there is not one reason why the term normal should not be an exceptionally relative idiom. I look at those who wear their AS more obviously than I do with a bit of envy. I admire them their ability to share their brilliant differences. I applaud them for their self-acceptance. I thank them for their realism. And I hope that as we continue to explore the nature of autistic spectrum disorders and the lives that are touched by it, we are able to find much richness and goodness in our common bond. Perhaps then, society will not come to the consensus that those who keep their AS traits intact, either as a conscious choice or because they were never quite able to combine their abilities and exceptionalities any differently, are people who are less than acceptable, less than honorable.
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.