...I'm Just a Little Unwell: Coping with Asperger's Syndrome
Note: This is a slightly revised version of an essay I wrote for Honors English in 2012, hence the citations. It was never published outside the class so I think it fits within HubPages' terms and conditions. Since then, Asperger's syndrome has been declassified, but I refuse to accept that. I won't let a bunch of doctors take away such a huge part of my identity even if it's a part that I hate.
I am about five years old, lounging around at home on a normal evening with hardly a care in the world. Everyone is at home and I am enjoying their company. My mother is cooking something for dinner on the stove and when I walk into the kitchen to investigate, I notice that its odor is decidedly unpleasant. “That stinks,” I inform her.
Instantly my father speaks up from the next room. “Don't talk to your mother like that,” he snaps.
Why? I wonder to myself. I'm only stating an objective fact. But I am not in the mood for a confrontation this time around (although on other occasions I have been) so I come up with the perfectly logical solution of plugging my nose. This way my mother doesn't have to hear me complain, and I don't have to smell her cooking.
Moments later I find myself wondering why the heck I am being hauled off and spanked. I yell “Sorry!” but to no avail. How, I wonder, was I supposed to know that was unacceptable behavior? No one had ever explained such a scenario to me.
Incidents like this are probably not atypical during childhood – I wouldn't know, having only experienced one childhood firsthand myself, but children do seem to have a knack for brutal honesty. What I do know all too well is that similar gaffes have persisted and had negative repercussions up to and including the alienation of my best friend from college. It was only within the last few years, with the help of a doctor's offhand comment and an Internet search, that I began to grasp why everything was so difficult. I have Asperger's syndrome. I won't pretend it's the most pressing issue in the world, but it's the one I'm most familiar with so it's the one I'm going to focus on for now.
Asperger's syndrome is a disorder on the mild end of the autism spectrum which affects, at the very least, one in a thousand people (Sainsbury 13). Tony Attwood says, “Perhaps the simplest way to understand Asperger’s syndrome is to think of it as describing someone who perceives and thinks about the world differently to other people” (Attwood 12). Yes, that is the simplest way, but it doesn't really give an idea of what to look for and expect. The syndrome was first described in detail by an Austrian psychiatrist named Hans Asperger in 1944 (Hénault 15), hence the name. The symptoms vary from person to person and provide both advantages and disadvantages in life.
Above all however, “Aspies” (which is a much cooler term than “individuals with Asperger's syndrome”) lack instinctive understanding of society and human interaction. This in turn causes lifelong difficulty with friendships, romantic relationships, and pursuing education and careers. Although these problems persist for me I've observed that the more awareness I raise among my peers, the more understanding and compassion I get and the easier life becomes. It's essential for parents, educators, and Aspies themselves to be more aware and understanding of this issue. When they are, we can all help one another feel comfortable and work through difficulties. Great strides have been made in that regard but they aren't quite enough, not quite yet.
Aspies have a very hard time forming and keeping relationships with their peers in childhood, adolescence and even adulthood. I certainly had and still have friends, to be sure, but I have never been entirely comfortable around them and I am rarely the one to initiate conversations or anything like that. The main issue is that Aspies like me share autistic traits which impair social interaction, such as difficulties in communicating non-verbally, sharing others' interests and emotions, and sustaining conversations (Freedman 18).
It's always very awkward when I'm talking to someone and I know I should be putting more inflection in my voice and more expression on my face, but I just don't know how to do it realistically. Yet that's nothing compared to when I try to do or say something in a social setting, based on my own best judgment and observations, and everyone expresses genuine perplexity as to why I would have thought it acceptable.
Clare Sainsbury, who also has Asperger's, writes of her childhood: “I don't understand the children around me... I used to think that they were silly, but now I am beginning to understand that I am the one who is all wrong... It's as if everybody is playing some complicated game and I am the only one who hasn't been told the rules... I think that I may be an alien who has been put on this planet by mistake; I hope that this is so, because this means that there might be other people out there in the universe like me.” (Sainsbury 8). This is exactly how I felt, although I never described it with that particular metaphor until one of my middle school friends actually asked me if I thought I was an alien wearing a mask. I didn't really but I tried to pull my face off just in case. True story.
Of course there are other people out there in the universe like her and like me; on this very planet, in fact. Finding that out was sort of bittersweet – I'm happy to not be alone in my struggle, but on the other hand I could insert my name into almost any of the stories and descriptions I've read, so I don't feel very unique. I chose to focus on the positive aspect regardless. As far as I'm aware I haven't encountered any Aspies in person throughout my life so I have usually preferred to be alone, with my dog or with the internet. In public I often find myself going to great lengths to avoid my own friends because, though I like them a lot, I often much prefer holding conversations with my own thoughts.
It's been convincingly suggested that solitude is in fact healthy for people like me as it allows us to relax from both social pressures and sensory stimuli, making us happy and making it easier for us to learn and explore our interests (Attwood 56). I have found this to be true and was glad to see it written by a professional, because the idea that solitude is always somehow a bad thing is a false one that should be done away with.
However, civilization functions in such a way that being alone isn't always an option for even the most solitary of lifestyle choices, and so the problem of social interaction still must be confronted and dealt with somehow. Aspies should be prepared for society, but so too should society be prepared for them – I've learned the hard way that it does no good for me to overcome my fear of social situations when people only justify said fear by shunning me for being strange and creepy.
Asperger's syndrome as it relates to sexuality is a subject which has received little attention except by a few researchers such as Tony Attwood and Isabelle Hénault, but I feel it worth mentioning because we're animals at heart and sex is a big part of our lives. Puberty in Aspies is the same as in the general population (thank goodness) and sex education can likewise be handled in the same way, but with an emphasis on colloquial terminology which will facilitate unmolested interaction with peers (Hénault 19-20). In other words, high school students talk about sex all the time and if an Aspie is to fit in he must understand them. I certainly learned a lot more about it from daily lunchtime conversations with friends than from anywhere else.
When the time arrives for romantic interests and marriage, the same social handicaps as always still apply but are even more frustrating; yet certain traits of Asperger's syndrome, varying by gender, can in fact be endearing to a potential partner (Attwood 304-306). This was exciting and surprising news for me. The list is actually quite extensive and I recognized some of the traits in myself (though not all, as the symptoms vary here just as with the syndrome proper) and that gives me hope for the future. Talking about these things with a young Aspie who is feeling doomed to a life of loneliness may do wonders for his self-esteem. Even I am starting to believe that not every guy has to be a jock.
Notwithstanding, issues still come up in these relationships and form a strain on romantic partners. There's the social ineptitude as I said but perhaps the most difficult problem is when an Aspie manages to hide his or her differences during the courtship phase and, once married, surprises the spouse by dropping the facade and becoming an entirely different person (Attwood 306). Such a facade is something I tried to keep up for many years and don't recommend for anyone with this any sort of condition. It's much healthier and more beneficial to be open about these things and work them out with others; in this situation it helps the Aspie to get the support he needs and probably find someone who's better suited to him anyway.
The most common problem, however, is loneliness. The spouse is often lonely because the Aspie is less interested in socializing with mutual friends and less able to verbally express his or her love (Attwood 306-307). Mutual openness and understanding can only be attained when this syndrome is widely known about and talked about long before the point of romantic relationships. One thing I find myself able to communicate about is my lack of communication. Then, when a relationship is underway, the Aspie will be better suited to meet the partner's emotional needs and the partner will be prepared for and not hurt by the Aspie's emotional shortcomings.
Although I've painted a bleak picture thus far, I am glad to report that having Asperger's syndrome certainly doesn't doom people to a lack of success in society and the world. Indeed, several famous and successful individuals throughout history have exhibited characteristics of the syndrome, such as Isaac Newton, Albert Einstein, Lewis Carroll, and Nicola Tesla; and strong evidence from documents and acquaintances indicates that several others have as well (Ortiz 155). In many such artistic or scientific examples it's even probable that the mindset and worldview of the syndrome played a significant role in their success, for it can “lay the groundwork for dynamic career paths, or directly contribute to their vocational pursuits, achievements, and aspirations” (Ortiz 122).
Hans Asperger himself wrote that autistic children (by which he meant to include those with Asperger's) seem more than others to have a “predestination” for certain careers that are naturally suited to their unique talents (Attwood 292), especially in fields like science and engineering which require intelligence and attention to detail. It's not a coincidence that scientists and engineers have a reputation for being socially awkward, but there are worse things to be. Personally my affinity for non-human animals is leading me to work with them for a living and help endangered species.
However, as mentioned, solitude is not always possible and social skills are a necessary component in every career path, which often makes for a difficult process that should be met by parents with careful planning in the early years. Dr. Sarita Freedman says “It is crucial to help students develop greater awareness of their strengths and weaknesses, interests, cognitive abilities, and skills in an effort to guide them through this very important decision-making process. I recommend that students undergo a complete neuropsychological evaluation by a private practitioner in their sophomore or junior year of high school” (Freedman 164).
This includes deciding whether one should even go to college or not, although that's becoming more and more necessary and most of them certainly have the academic qualifications for it. Parents and educators can not only help with social skills but also look at the Aspie's interests and proclivities and help him figure out which career paths he may be “predestined” for. Without such preparation Aspies are often caught off guard by the psychological stresses of college or the workforce in spite of often having great intellectual prowess. I know I was. By far the most difficult part of gaining my independence was that suddenly most of the social interaction required to meet my needs became my responsibility alone, and it still terrifies me.
Society has already adapted somewhat to the needs of Aspies within the last century. It all started, naturally, with the diagnosis of the syndrome by Hans Asperger in 1941, but it wasn't until forty years later in 1981 that psychiatrist Lorna Wing made note of the differences between this syndrome and traditional autism, and in her paper she was the first to give it the name “Asperger's” (Attwood 35). In the intervening years people with the syndrome were still classified unofficially as “undesirables” and no one knew what to do with them.
For example, John Ortiz recalls that although he had been the equivalent of today's honors students in his native Cuba, his 1961 attempt to enroll in an American school led to him being classified as “mentally retarded”. This was partially due to his difficulty with English but mostly due to his other quirks, and in any case nothing whatsoever was done to help him (Ortiz 14). This is reminiscent to me of all the mentally unstable people in the past who have been locked up instead of receiving psychological treatment. Society messes everything up on its first try, but it gets better over time. All we can do is push for it to get better faster and I'm grateful to live during and become a part of this transitional phase of history.
Awareness has since risen dramatically, as evidenced by the number of books on the subject within the last couple of decades. Sarita Freedman is one of many who describes in detail a list of social and other skills that Aspies should be trained in by parents and psychologists for success in areas such as personal communication which are crucial for functioning in society (Freedman 21-22). However, even today many teenagers with Asperger's describe the same difficulties at school as adults with the syndrome remember having, and many of these difficulties date back at least as far as Hans Asperger's original 1944 paper on the subject (Sainsbury 9).
I'm no exception. I've described how I feel in public. Awareness and understanding haven't extended far enough to make all Aspies comfortable in society and help them reach their full potential, but it's entirely possible that this will change rapidly within the next decade. I was born in the early nineties when awareness was just getting off the ground, while those who come after me have an increasingly better chance that their parents and educators were and are aware of their issues and willing to help. I know my parents would have helped me more if they had known how, and I think something as simple as Dr. Freedman's list would have made a big difference. Even the mere knowledge that I wasn't alone could have helped immensely.
Although teaching these skills is beneficial, there is no need to fundamentally change Aspies to be just like everyone else. Indeed, this is impossible. I have learned some social norms and skills over the years – a discouragingly small amount, but some nonetheless; for example I now understand that “How are you?” actually just means “Hi”, “Have an open mind” means “Agree with me”, and “Be yourself” means “Choose an accepted form of weirdness”. I also managed to learn sarcasm early on in life and took far too much advantage of it.
Yet in the majority of cases whenever I manage to act like everyone else I'm just that; an actor. I'm pretending to be someone I'm not so that others will be comfortable, because many of them can't seem to cope with the way I am. That is, until I tell them about my syndrome and they feel guilty because apparently that somehow changes everything.
Now, I'm not suggesting that we completely restructure the workings of society for the exclusive benefit of one in a thousand people. Nonverbal communication and certain social rituals exist for good reasons or, if not, at least because that's what works for the majority of people. Yet society has already learned to provide accommodations for people with a variety of handicaps, and although this one is less tangible and harder to work with it should be treated the same way.
When I first heard the “Asperger's” term a few years ago I was mystified and slightly offended; now, a higher and higher percentage of the people I talk to about it know it exists and often have at least a vague idea of what it is. I hope to push this trend even farther. When Asperger's syndrome is demystified and no longer perceived as something to be embarrassed about, Aspies will meet with greater patience and acceptance, and our lack of normal social skills will cease to be a cause for anxiety and low self-esteem.
People will realize that when we do or say things “wrong” it's just the way our minds work and that's usually okay. We'll have the confidence and understanding to work things out with parents, educators, employers, friends, and romantic partners, and to focus instead on the benefits and advantages of our condition. I don't know yet what else can be done but this in itself would please me and others very much.
Attwood, Tony. The Complete Guide to Asperger's Syndrome. London, GBR: Jessica Kingsley Publishers, 2006. Internet. Accessed 2/25/2012. http://site.ebrary.com/lib/usulibraries/docDetail.action?docID=10182480
Freedman, Sarita. Developing College Skills in Students with Autism and Asperger's Syndrome.
London, GBR: Jessica Kingsley Publishers, 2010. Internet. Accessed 2/25/2012. http://site.ebrary.com/lib/usulibraries/docDetail.action?docID=10447005
Hénault, Isabelle. Asperger Syndrome and Sexuality : From Adolescence through Adulthood. London, GBR: Jessica Kingsley Publishers, 2005. Internet. Accessed 2/26/2012.
Ortiz, John M.. Myriad Gifts of Asperger's Syndrome. London, GBR: Jessica Kingsley Publishers, 2008. Internet. Accessed 2/23/2012. http://site.ebrary.com/lib/usulibraries/docDetail.action?docID=10251454
Sainsbury, Clare. Martian in the Playground: Understanding the Schoolchild with Asperger's. Lucky Duck, 2000. Print.