By Jeanie McAfee, M.D. 5/23/05
Children and adults with Asperger’s Syndrome or high functioning autism (AS/HFA) have core neurologically-based deficits in social-emotional and communication skills. Without specialized help with these skills, even the brightest person with AS/HFA may end up unable to make and keep friends or hold down a job. I have worked with several adults with AS/HFA who were honors students right through college and graduate school and then graduated, only to find that they could not hold down a job. One of the main reasons for this deplorable situation is that the person with AS/HFA has trouble relating to other people on the job. He or she may say or do things that come across as socially awkward or downright rude, such as ignoring co-workers when they say hello, talking about their own pursuits with no apparent interest in what the other person may have to say, or making negative comments about people’s work, appearance, or habits, either directly to the other person or right in front of him or her. To make matters worse, after being fired, the employee with AS/HFA may never understand the real reasons why he or she lost the job.
In addition to problems holding down a job, the individual with AS/HFA all too often ends up with no close friends, and with slim chances of finding a spouse or soul-mate. This happens because of profound problems with social-emotional understanding. These individuals can have a great deal of trouble understanding feelings (including their own), and as a result they may appear to be detached and uncaring, or, at the other extreme, out of control of their feelings. So a husband with AS figures that since he told his wife on their wedding day that he loved her, he doesn’t need to say it again (unless he changes his mind, of course!). Or a fifteen year old boy with HFA who has just won the school math contest jumps up and down with happiness one minute and then yells and sobs the next minute because any kind of strong feelings, positive or negative, overwhelm him.
Folks with AS/HFA generally have a lot of trouble understanding the unspoken rules that govern how one must act around other people in order to get along socially. For example, imagine that you never learned the rules that tell you what you can safely say to your eight-year old classmate versus what you can safely say to your great aunt Tillie or to your classroom teacher. Say, for example, that you are a typical first grade boy with a propensity to use what we adults like to call “potty language”. (This disease of the mouth reoccurs, but with more sophisticated language, in many boys when they reach puberty, as any parent of a thirteen year old male can tell you.) So you go around during lunch and recess happily sharing with your classmates observations like “I heard Johnny fart!” to the tune of “Nanner, Nanner, Nanner!”, sung at maximum volume to the delight of all of the other little boys (and the disgust of all of the little girls, which is even better). But imagine that one day you happen to notice your favorite teacher trying to get away with a nice quiet toot. Having experienced, for a short time at least, the elevated position of prince of comedy amongst your classmates, you decide to try out the same number on the teacher. And then, for no reason that you can discern, your usually kind and friendly teacher turns into a different person entirely. Not only does she not laugh like she is supposed to, but she gets you in trouble. For the life of you, you can’t understand what you did wrong, and so you add one more piece of evidence to your growing belief that people are not logical beings and the world is not a fair place at all.
If you are a person with AS/HFA, chances are that you have a hard time reading other people’s non-verbal cues (body language, facial expression, and tone of voice), which, by the way, make up about 70-80% of what we communicate. (Amazingly, our words only count for about 20%-30% of what we communicate to each other when we talk.) Most people need to read non-verbal cues in order to make accurate guesses about what other people are thinking, feeling, and intending (for those who are uninitiated, the fancy term for this is “theory of mind” or the ability to “mind read”). If you can’t read non-verbal cues and you don’t understand or predict other people’s thoughts, feelings and intentions, you will repeatedly mess-up in your interactions with others. Imagine for a moment being an eleven year old kid with AS who can’t tell when your mom is in a good mood or a bad mood, even when it’s abundantly obvious to everyone else in the family. Think of the possible consequences of this. Say your mom was already having a bad hair day and then finds out that your dad just chopped down her extremely rare bongabonga tree in the back yard. You must understand that this was a tree that she had loved, nurtured, and coaxed along for the past nineteen years just like it was one of her own children. Now without warning her husband has just upped and chopped it down because, he innocently explains, he was tired of raking the leaves. Say you were to choose just that moment to start describing in detail a long list of Yugi-Oh cards that you want…imagine your confusion when your beloved mother reacts to you with something other than her usual calm and friendly words. More evidence of the illogical and fickle nature of people, even of people that you love.
So much for the bad news. The good news is that people with AS/HFA typically have many talents that can make them highly valuable as friends, lovers, and workers. They can have an extraordinary ability to focus on one isolated topic without getting distracted by other, unrelated input into their brains. This can lead to achievements that help the rest of us enjoy an enriched quality of life and a better understanding of the universe in which we live. Many of our major advances in literature, the arts, computer technology, mathematics, and other sciences were achieved by people with AS/HFA. For example, Mozart and Einstein probably had Asperger’s Syndrome and one of the traits that made them appear “different” from other people, (namely their perseveration on their respective areas of interest) was also the very trait that allowed them to make such great contributions to human knowledge and experience. In addition, many of our students, friends and loved ones with AS/HFA are superior in their loyalty, honesty, and logical thinking. Their senses of humor can be magnificent, and their memories for facts mind-boggling.
The other good news is that there is a rapidly growing body of knowledge about AS/HFA out there, and as our knowledge increases, so does the number of possible interventions. So how can we choose the best treatments for our student or loved one with AS/HFA? When we are searching for social-emotional and communication skills interventions it helps to recognize that AS and HFA are neurological conditions based in the brain (with a strong underlying genetic component). It now appears that certain centers and pathways in the brain that control communication and social-emotional skills do not function normally in people with autism spectrum disorders. Therefore, it makes sense to look for programs that will either re-train these areas to work more normally, or train other brain areas to take over these tasks. We know from experience in working with other brain disorders that this is possible mainly by identifying specific skills that need to be taught, breaking down these skills into small steps, and then slowly teaching each step, building the next step on those that have been previously learned (commonly called scaffolding in educational circles). This takes time. A typical social-emotional skills curriculum will take the average person with AS or HFA a few years to master with periodic updates afterwards. So prepare for the long haul. The payoff will be seeing your loved one or student obtain the skills that will help him or her live a more full and independent life.