What is this Asperger's Syndrome, anyway? As I alluded to in my previous post, Neurological Disorder or Natural Diversity?, after many years of knowing that I was different, I finally learned why when I read Wired Magazine (The Geek Syndrome), which described an autism spectrum disorder called Asperger's Syndrome.
The more I read the descriptions of these people, the more I saw myself.The clincher came when, at the end, they provided a copy of Simon Baron-Cohen’s Autism Quotient Test, a questionnaire designed to indicate the presence of autistic traits. I took it on the spot and scored very high – and I realized I was onto something, and I began to learn about Asperger’s and what it meant to my life.
So, overall, what does it mean to have Asperger’s? How does it affect how a person interacts with the world? What are the challenges?
In general, people with Asperger’s generally have trouble with social interaction, communication, as well as regulation of the motor skills and sensory systems.They also can develop obsessive and compulsive tendencies, which manifest themselves in various ways. I’ve said many times that there are many “flavors” of Asperger’s – but I’ll touch on some of the common areas of challenge:
Many people with Asperger’s appear to be “nerds” or “geeks.” Kind people might call us “eccentric." Socially, we must learn by rote what your average person picks up by instinct, such as the interpretation of facial expressions, other’s emotions, or social overtures.
We may only sporadically pick up unwritten social rules, or we may not learn to execute them in an appropriate way. Like a computer, we must figure social situations out logically, and build sets of instructions for each situation, which makes interaction extremely painstaking and difficult. Because of this, we lag behind our peers in social skills, and may come to avoid social interaction altogether.
Many of those of us who have learned to cope with this in adulthood, have developed a comprehensive program, “social scripts,” if you will, to logically handle social situations. As these become more and more complex, the more we are able to “act normal” – but this is simulation. We think differently, and must shoe-horn our thinking processes into a social world that is, for us, completely alien.
It is also very difficult for many of us to learn to use and interpret body language. We may have difficulty looking someone in the eye, and may not use appropriate facial expressions. Because of this, we can be very misunderstood by people who cannot “read” what we are thinking and feeling through our body language, because we don’t know how to convey it or even realize that others do this. Many find it very difficult to look another person in the eye, or if they do, appear to do so in a way that may feel to the other person as “stiff” or “unnatural.”
Unlike people with “classic” autism, people with Asperger syndrome typically do not appear to have any significant delays in the development of language. Some of us even speak early, but the quality of our speech is different. Language is used in a very atypical way.
Like our social skills, it’s learned by rote. The social quotient is lacking – we don’t fully understand (until taught), the social aspects of language.To us, it begins as a simple means of information exchange, not as a means of connecting with people (for example, the concept and execution of “small talk” can be difficult for someone with Asperger’s).
We may not master the art of using inflection to imbue language with meaning, and so develop a very monotonous or odd manner of speech. We also frequently miss the social cues that tell us what language to use when, and how often – so we may talk too much, too little, use overly formal, or informal language, or use inappropriate language for a specific situation (for example, swearing in front of a boss, or speaking overly familiarly to an authority figure).
Ironically, some children can appear very advanced, because we will pick up very sophisticated “adult” language – either from listening to adults, or from reading books. This can lead to further social ostracization from other kids, who’ll say “How come you talk like a grown up?”
On the other side, seemingly “simple” concepts as pronouns may throw a person with Asperger’s. A child learning to talk may refer to everyone using the same pronoun, or refer to themselves in third person. The concept that a single person can be referred to using several different pronouns, and those pronouns can be used for multiple people, can be a difficult one. In another example, as a child, a person I know observed his parents referring to each other using their first names, or endearments such as “honey” – and adopted the same manner of address. All attempts during his childhood to break him of the habit failed. He never used “mama” or “dada”, or later “mom” or “dad” to refer to his parents. Although he now understands how most people address to their parents, in his adulthood, he still refers to his parents by their first names. The habit is ingrained.
From a young age, most people with Asperger’s develop a specific “pet subject,” which they will throw all their energy and time into learning. Most frequently, a person with Asperger’s will choose only one at a time (or as many people with Asperger’s will say, it chooses them), and it will become the core of their lives. The special interest often fall in to the areas of science, mathematics, engineering, or mechanics, but there are also many people who develop interests in art, writing, or other creative pursuits.
As adults, we will often be drawn by that special interest into our careers. Many scientists, computer programmers, and academics are believed to have Asperger’s. We typically have prodigious memories, which allow us to catalog and store large amounts of information, and a laser focus to acquire all possible information on a subject.
In order to keep order in our world, and cope with our other challenges, many people with Asperger’s develop a very rigid “rules based” way of doing things. Many struggle with change, and prefer, and almost obsessively maintain “sameness” in their world. Because of the lack of certain instincts, and our “script based” way of relating to the world, we have trouble varying routines. We have to rely on rote.
Because the nervous system is wired differently in a person with Asperger’s, we experience the world very differently. We can be oversensitive or undersensitive to certain stimuli. Smells or sounds that may not bother another, may be incredibly intrusive to us. We might not be able bear certain textures. The brain and nervous system my overload when any one sense, or combination of senses, is overwhelmed. A loud stadium, or big crowd may cause us intense stress and perhaps an angry outburst. Even certain types of lighting might cause distress.
Another symptom of a differently wired neurological system can be a difficulty in coordinating movement. In short, we’re often clumsy. A person with Asperger’s may struggle with sports, or other activities that require coordination. We may be unable to sense our bodies in space, and therefore constantly hurt ourselves by bumping into things. Further, handwriting can be a very difficult and laborious process.
While navigating the social realm can feel to us like driving a race car blindfolded, but many of us have learned to compensate. With the right teachers and mentors, we learn. As we get older, we learn. As I mentioned in my first post (referenced above), there can be many advantages. Because our brains are different, we think differently, which can lead to “out of the box” solutions that your average person does not think of.
Our extreme ability to focus, combined with our intense special interests can make us extremely effective in our field, whatever that may be. We typically have very good, sometimes encyclopedic memories, and have IQs in average to well above average range. Many “geniuses” such as Mozart, and Albert Einstein have been thought to have Asperger’s or high functioning autism.
So, those of us who learn to cope with the difficulties, can develop lives as fulfilling as any other. Just a little differently.