AN ADULT WITH ASPERGER'S SYNDROME ANSWERS COMMON QUESTIONS
Reproduced with permission of Lars Perner from www.aspergerssyndrome.org
People frequently send me questions about autism and Asperger's Syndrome. These questions come from parents, and relatives, (potential) spouses of people on the spectrum and from people who either have or believe they might have an autism spectrum condition.
Below are certain paraphrased questions and my answers with identifying information removed. Hope these answers may be useful to others. Please feel to write if you would like clarification, discuss other issues, or talk about how issues raised may apply more specifically to the person of interest to you.
Why isn't every one with Asperger's doing well at school?
Paraphrased question: "I have a teenage son with Asperger's Syndrome. I am just curious as to why you are so clever and yet my son has also been diagnosed with Asperger and he is struggling at school. Yet I see that you have degrees etc. etc. and my son is not even passing subjects which AS children are supposed to be good at, in fact he is failing mathematics, science and technology. His social behavior is consistent with AS and he has narrow interest. He only does and talks about __________, yet when it comes to intelligence I don't see the connection could you please explain?"
Answer: Individuals who have Asperger's Syndrome vary a great deal from each other, so one would not expect two people with the condition to have similar skills. In fact, people with AS often tend to gravitate toward one extreme or another in terms of performance in different areas. I have some good verbal skills, for example, but I am severely challenged in the area of mathematics and in terms of spatial ability. Driving is, therefore, a considerable challenge to me. In elementary school, I had great difficulty initially learning to read although I improved dramatically over time. Also, my handwriting has always been very difficult to read and I have very poor skills in drawing pictures.
It is a common misunderstanding that people with AS are supposed to be good at math or science. Some are and some are not. Those subjects were never my strength. You might check out Liane Holliday-Willey's site at http://www.aspie.com/pages/1/index.htm for the same viewpoint.
In my opinion, the most important thing for someone with AS is to identify his or her special interests. Interests often change over time, so skateboarding may not be what your son will find interesting in the long run. For now, many educators have found it useful to incorporate the child's interest into as many subjects as possible. Your son might find more comfort, for example, with reading assignments that involve ________and math and science assignments that deal with this issue. If you have not already read my paper on "marketing" people on the autism spectrum, you may want to check out http://www.aspergerssyndrome.org/self-marketing.htm .
There are a number of good books available on AS. My recommended reading list is at http://www.aspergerssyndrome.org/books.htm . I especially recommend books by Tony Attwood, Mike Stanton, Stephen Shore, Jerry Newport, and Liane Holliday-Willey.
intimacy issues for partners of someone with aspergers
Paraphrased question: "I have lived for ___ years with a very intelligent man who will not accept that he is Asperger's. I see much of him in your self-analysis and read it to him in the hope he might recognize himself. Indeed, some of your comments struck home and I think he was encouraged by the fact that I was obviously trying to show him that I see Aperger's as being intensely admirable, and yes, as you say, indeed "superior" in many ways. Why am I emailing you? Because I want to know, can I bring someone with Asperger's to love me back? Physical intimacy comes at such discomfort that he seems to have given up."
Answer: "On the issue of
feeling more comfortable with having Asperger's Syndrome (AS), I
should first of all say that it is more useful to see AS as a way
to understand oneself rather than as either having it or not. Different
characteristics of AS will show up in different people to different
degrees, and it is difficult to draw a line in the sand at any point
to say whether one has the condition or not. Last year, I read a
very interesting book entitled A Short History of Nearly Everything.
This book discussed individuals who had made major scientific discoveries
in history, and these people all appeared to be rather eccentric.
It is clear, therefore, that people who are somewhat different have
made major contributions to the world that would not have been made
by "normal" people. It has been a great support for me
to grow up in a family of proud eccentrics where unusual characteristics
were seen as positive rather than negative. I am not sure what kinds
of experiences your partner has had in this regard, but it may help
to accentuate the positive. Temple
Grandin, in her books, makes this point. Tony Attwood also focuses
on making the best of AS in his book, but his focus is mostly on
children (although he does talk about how AS is often recognized
in fathers of children that he sees). Although written from a woman's
perspective, I also strongly recommend Liane Holliday-Willey's book
Pretending to Be Normal.
In terms of physical intimacy issues, I cannot offer much practical advice. I have never had physical intimacy with anyone and have never had an enduring relationship, either. This area in large part comes down to a matter of values, so I cannot say what is right in your case. My inclination would be to focus on non-physical aspects of the relationship, but I fully understand that this may not be satisfactory in your case. Jerry and Mary Newport have a book that deals specifically with physical intimacy issues and autism (although intended mainly for a younger group) that may give some more ideas. Although I recall that physical intimacy was not discussed much if at all, you may also find the book An Asperger Marriage of interest."
Why is there such variation between inviduals on the spectruM?
Paraphrased question: "It seems that I'll read one book about autism which says one thing then read the exact opposite in another. About half the things I read don't seem to apply to my son at all. About half seem to apply but, of course, not completely."
Answer: Books and information can be very confusing and you are correct that different books often say completely opposite things. One methaphor that I find useful to understand autism is and Asperger's Syndrome (AS) is El Niño, the weather pattern that did not just result in water getting farmer, as it did on the average, but also resulted in colder weather in some regions and extreme variations over time. Differences among people with AS are, in many ways, greater than similarities. Part of the symptoms of AS undoubtedly result from different brain structures. There is evidence that people with AS tend to have more, but shorter and less, dendrites (neural connections). In some parts of the brain, there is also more connective tissue.
One theory holds that prior to birth, a fetus has many more brain cell connections than can survive and that the connections lost and that different connections may have been lost among people with AS. This accounts for both special abilities and impairments relative to others. Some people with AS may have tremendous mathematical abilities and poor verbal skills while the pattern will be opposite for others. One large problem in autism is that perspectives by different groups of individuals will often be very different (see my essay at http://www.aspergerssyndrome.org/perspectives_on_autism.htm for more information on this.) The different experiences that different writers have had will often shape the very different conclusions they have reached.
The criteria for AS are somewhat arbitrary and vague. To me, it is more important to think of AS as a way to understand oneself and a family member rather than thinking of either having the condition or not. Unfortunately, there are some very powerful people in the biomedical community who believe in very strict diagnostic standards and hold the position that you either have AS or not. Their belief is that if the category is broadened to apply the diagnosis to too many people, AS will somehow become "less special." I do not agree with this view, but you may have heard it.
how can i help my child to deal with emotional outbursts?
Paraphrased question: "The thing that most interested me in your account was how you went from struggling with emotional outbursts to being very restrained as an adult. Do you recall how this evolution took place? Outbursts are my son's biggest challenge. By outbursts, I mean yelling, crying, stomping his feet. He never hurts anyone. He too is very attuned to rules and fairness. When his sense of how things should be is violated, he often has an outburst. Competition is difficult. He also has sensory problems that trigger outbursts, and he's inflexible. Are these the types of things you dealt with? If so, how did you overcome them? Can you think back to what it was like when you were ____ years old?"
Answer: "My evolution probably resulted in large part from learning that outbursts were not effective and gaining a better understanding of how to avoid them. To me, control of my situation has always been very important, and when encountering a situation where I felt less control, I would reach a state of despair and panic and do what I thought would change the situation. On the other hand, I have a strong aversion to confrontation. As I grew older, I was gradually allowed more control of the situation and I learned to understand and better predict what would happen. I also learned that other people, if nothing else, were "too stupid" to understand the "righteousness" of my way and that it was not worth the confrontation to attempt the to "correct" others.
With respect to triggers of outbursts, one thing to remember is the sheer exhaust that someone with AS may reach more quickly than others. I am extremely susceptible to irritation from noise created by others. Many people can fairly easily "tune out" background noise but that is more difficult for me. I now also know that I need time to "decompress" and allow myself to take this time.
On the specific issue of competition, this, too, has been stressful for me. One problem that I have here is the sheer frustration of having the outcome "hanging in the air" of uncertainty. Some people like the suspense of not knowing the outcome of a game; to me, that is frustrating and unnerving.
From the point of view of what I experienced at age ___, my greatest frustrations unquestionably related to lack of perceived control. What would have helped me most would be predictability.
One thing that frustrates me more than anything else is spontaneous requests and changes in plans. It is difficult for me to understand intellectually, and I can imagine how absurd it would sound to many others, but a offering me the opportunity to change a plan at the last minute (even if the offer is to change to something that I might be expected to enjoy more) is not likely to be favorably perceived. I remember one situation where my mother and I had planned to go to a Chinese restaurant. As we were nearing the restaurant, my mother asked me if I would rather go to the nearby Mexican restaurant that I also liked. I felt very upset and had difficulty understanding why (my mother was offering me another choice and did not ask me to sacrifice what I actually wanted). However, I felt frustration. First, I would have to come up with an immediate answer. Another problem is that I would also feel an obligation to think about the other person--did my mother actually prefer to go to the other restaurant or would she actually be sacrificing her preference? You can imagine how complicated this situation would have become if there had been several other people in the car and the question had been put to us collectively!"
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This story remains the copyright of Lars Perner. Visit his website at www.aspergerssyndrome.org