A Walk inside My Mind: Living with Asperger’s
I have thought of many ways to start this paper and I will more than likely think of many more before I am done with the writing, editing and reading of what I have written here. However, I guess the best way to start really is to say that which will be apparent to the reader soon enough. This is a personal piece and though I hope to write many more papers that have more serious and scientific emphasis, this is not a paper for that purpose.
I have spent many hours talking with people from many different lifestyles and during those many conversations, I have told many stories about my life. Some of the people that I have spoken with have indicated in words and facial responses that they would read a memoir that I have written about my life… and I respond much the same: The only reason a memoir would be interesting is if you know me, otherwise there are people far more interesting than myself in the world that have better stories to tell. I have no wish to clog the already full bookcases with a simple story that only a handful would like to read. In addition, I have no wish to relive my life in the ways that a writer would need to. I have lived it, verbally told the story, and I move on.
Nevertheless, it seems that there is a story in my life that I feel is worth telling in the written word, and not because it is an emotional tale, but rather a rational and simple one that I hope, many others would be able to gain insight on. My goal is to provide a point of view that will help others understand the points of view of loved ones around them. I am writing about the interaction of a personality and a ‘gift’ inside of my head, and I only hope that it will help more people than I will receive criticism for it.
What is Asperger’s Disorder?
Asperger’s Disorder has been a victim of stereotypes and misperceptions over the years and part of this is due to the relationship that Asperger’s has with Autism. Asperger’s is a form of high functioning Autism and part of the Autism Spectrum Disorders (Sicile-Kira, 2004). Autism, in its lowest functioning forms, is a disorder much like Mental Retardation, so many individuals that hear the term “Asperger’s” assume a person is mentally retarded. There are many believed cases; including believing much like it was in the time of Jesus Christ, that the parents did something terrible to cause the child to be disabled. I am often amazed by how many people pity me or feel sorry for me or treatment me as if I am deaf and dumb when they hear that I am confirmed with Asperger’s. And then there are many that believe that I am a genius when they here Autism in reference to me… though my last online IQ quiz put me at about 140, but I think that happened because I was having a good day. I would ask the reader to please set aside the stereotypes now even if they are partly correct, and those with experience will probably agree with me.
While Asperger’s is part of the spectrum of Autism, I like to think of Asperger’s as the cousin of Autism: different but from the same family. When I discuss the relations of these two disorders to others in conversation, I will often draw out the image below on a sheet of paper or a napkin:
High Functioning ——- Asperger’s ——-  ———Autism—————–Low Functioning
Asperger’s patients are not always aware that they have the disorder or that there is even a problem. In a lot of cases of Asperger’s, the individual will find ways to adapt to the environments they are in with either a focus on logic or a selection of friends that are willing to spend time with an eccentric person. Asperger’s individuals tend to have high intelligence but not always are they geniuses (as has been portrayed on television) (Sicile-Kira, 2004). Many experts in the study and management of Asperger’s argue that though it is part of the spectrum of Autism, it is also a different expression of the disorder. As a result, a person that has experience with an Autistic person might be able to understand shared traits of an Asperger’s person but not in reverse.
We obtain a diagnosis of Asperger’s and Autism by looking at three important areas of how the person interacts with others in the world around them: Social, Communicative and Organizational (though some people will call it ‘restrictive patterns of behavior’) (Mesibov, Shea & Adams, 2001). I am not going to spend time on the process of diagnosing or the criterion, but I will spend a paragraph discussing each of the areas affected.
Social is often the area that comes to the attention of care-takers and others first. Autistics like to be alone a great deal or they with use barriers between themselves and others like computers, screens or other devices. Many autistics will also have a difficult time with social rules and norms, in some cases refusing to follow them unless there is a reasonable and logical explanation for the rules. In many ways an Autistic child is asking why to every social rule that is put in front of them and if there is no reason for the rule, they will dismiss it.
Communicative is the next area, and this does not refer only to verbal communication but also nonverbal. Many people with Asperger’s remain undiagnosed because there is still a stereotype that only people with low or no ability to speak are Autistic. Robison (2011) does a good job of discussing many different social behaviors that can communicate the wrong information, but do not make any sense in a real communication. Most Asperger’s patients like their communication to be simple, straightforward and direct, and finished definitively. In the books I have read by Asperger’s and the conversations I have had, most of them like the communication to get to the point, complete and move on. Moreover, at times this can seem very rude to other people, thus communicating the wrong information in the interaction.
The final area is with organization of objects, life activities, and thoughts. If you spend a long time with a person of Autism Spectrum Disorders, you will notice that many of them ‘have a method to their madness’. The organization is multifold because it assists the person with many areas of their life. The first is in keeping track of information, because the Asperger’s brain will process through thousands of bits of information while trying to figure life, other people and the world they live in. The other reason for the organization is a need to feel in control of their environment. People of Autistic Spectrum Disorders are often easily stressed and as a result, many will develop tools and routines to help cope with stress (Dubin, 2009). The last reason for the routines is so that nothing is forgotten or neglected, because while living in one’s one little world, sometimes you will forget to feed the cat or take out the trash. The routine helps to keep the little things in life taken care of.
I have had many people ask me about the causes of Autism/Asperger’s and there are many different theories and ideas. One idea that I thought was the most logical was found in Mirroring People by Iacboni (2008) in which he say that Asperger’s and Autism, are at least partially caused by a low population of Mirror Neurons in the brain. Mirror Neurons are the parts of the brain that help children to learn social behaviors and emotional cues and how to empathize with others that are around them (Iacoboni, 2008). In addition, Iacoboni (2008) points out that the dysfunction or low population of these Mirror neurons could be connected to many of the social difficulties that people with Asperger’s suffer from. Many of the social difficulties include: not understanding a joke if the punch line is implied, not understanding others’ emotional response to an event that they are unrelated to, and not being aware of social cues such as a person attempting to engage attention or attraction. I have been referred to as socially dense because of traits like these, and Robison (2011) points out many different rational skills that are used wisely in order to not socially alienate from the desirable group. The cause of the low population of mirror neurons is unknown but there are a few theories that are genetic, environment, or even evolution.
There a hundreds of books and articles on Asperger’s, Autism and Autism Spectrum Disorders and at the end of the writing of this article I have included the books to which I referred. I believe that they are all good sources of information.
Who I am now and in the past
Before I start, I should explain a little of whom I am. I am a 31-year-old woman and a budding academic in the field of psychology. I am currently teaching psychology and working to put my pen to paper or type my thoughts and ideas with the goals of improving the theories of psychology. Many consider me an individual of high intelligence and a rational observer of the human situation and its relation to the world. I spend time with friends and family and in all considerations thought to be a rather ‘normal’ person. The one way that I do not seem normal deals directly with my means of expressing emotion, as in there is not an intense and at times notable expression of emotion. For this reason, I have been accused of having no emotion, and there has been a couple of times that I have been asked if I am a sociopath. As I have been teaching for the last year, it is interesting to see many of my students responding to me as if I were cold as ice and I even had one call me egotistical, which I have never been called that by anyone before.
My life up until I turned 20 was not easy, and some of that could be due to a difficulty in my expressions of stress while growing up in a world that went from using answering machines to cell phones in a handful of years. Couple this with the many other difficulties of adolescence in the 1990s and turbulent world of my family, which I will not get into. What I will say that the trials I lived through not only helped me to develop a strong constitution as well as an interest and a heart-felt attachment to the subject I have made my occupation. I had someone ask me if I went in to psychology to figure out what was wrong with myself or someone else and I stared at them feeling confused (they thought I was angry at the question). After a moment I responded that I did not think there was anything wrong… instead I was trying to figure out people, I felt like I did not understand other people.
While reading this monologue, please keep in mind that I am an intellect, teacher and psychologist first before all other things and second to that, I am a human being. It is important to the writer that these concepts and ideas are first in my identity before everything else that this paper explains. I write this with the idea of being helpful to the larger psychological community and to help other humans because that is the most important part of whom I am.
My point of view on having Asperger’s Disorder
I have talked to many different people about my having Asperger’s Disorder and I have gotten many different reactions. One reaction was to ask me if I thought of the prevalence of my having this disorder as a disability and my response was “No, I see it as an explanation”. The reason I choose the word explanation is that I could see that I did not think about information in a ‘normal’ way. From the first psychology class I took in high school of the final paper of my master’s degree in psychology, I could plainly see that I did not think through information in a ‘typical’ way. I even went so far as to try to map out my thinking on a sheet of paper as a surveyor would with city streets. Even this simple act seemed weird to many that I showed it to… though they also said, ‘that is who you are and what you do.’
One concern that was brought up about acknowledging this explanation is that it gives me an excuse for anti-social or asocial behavior. I said in response that I do not see the excuse, but instead the way to develop tools to not behave in anti and asocial behavior. Tools that I might need would be doing some of the writing I am doing now, knowing that I need to spend time alone and understanding the ways in which I can better manage my resources and goals. As well as seeing the traits that I need to improve on that are typical of having Asperger’s. I passionately stand by the belief that a psychological disorder is no different from a medical disorder in the ways that people deal with it. Some people will use medical disorders as an excuse for avoidant and maladaptive behavior, while others will see it as a means to develop fulfilling relationships and benefiting goals. A disorder is only a disorder if the individual allows it to be a dictate on life and choices. I believe that both fate and free will work hand in hand, the determining result is the agreement an individual makes with himself or herself and the god (or lack thereof) that they believe in.
My family expressed concern about allowing the disorder to label me; however, I do not believe that I this disorder label me. Instead I view having Asperger’s as a pleasure and a gift. I think of my mind as a cave of wonders that I now have a map to and I am ready to explore. My explanation is also my joy, my gift, and my ability to provide the world with the ambitions of my goals for my career in psychology. I hope to use my mind to help the world understand more of the functions of the mind and help a few great minds to find their own way to improve the world we live in. People with cognitive disorders like Asperger’s see the world differently… much like standing in different locations in a room will help you see the room differently. Some people stand in the center and other stand in corners, when you combine the points together you get a better map of the whole.
Asperger’s affects what I believe
When I started to read and learn more about Autism Spectrum Disorders, my goal was to be able to provide accurate information to my students about a disorder that is growing in diagnosis and public awareness. There is a lot of misinformation and criticism with regards to this disorder and as a teacher it is important to provide correct information. I did not expect to find myself in the pages I was reading. I knew that I was a bit ‘weird’ and I have always made an effort to understand each of the traits. After I became more aware of the collection of traits that comes with the Asperger’s ‘package’, I felt that I found a mirror reflecting what I did not know. I later found out that I was diagnosed with Asperger’s as a child but never told of it because of other concerns and difficulties in my life at the time. Also there was very little information about the topic and that was a tentative diagnosis.
One of the traits that struck me first was the need for alone time. However I choose to spend that time, I still need it. I have tried to force myself to be a highly social person in the past and the result of a forced period is the same: me being angry with other people and confused. As a result, I have learned that it is okay to take a break and stay home for a while, or be introverted from time to time and even restrict social interaction to one or two people at that moment. Many of my close friends and family have become use to me sitting in silence during group conversation and this is because the many conversations going on around me can be over-whelming. I have also learned that when it is time to go home, it is okay to go home, and most people have learned to not stop me from leaving.
Another trait that struck me was the routines and organization behaviors, of which I do a great deal. I have my bedtime routine, my dinner and dishes routine, and I even have weekly routines for chores and other tasks. I spent a lot of time thinking about the routines and I realized that the need for the patterns partially needed for stress control. I have experience with non-verbal autistics in the past and was trained and warned about never changing their routines, which of course, suited me just fine. Though I have learned to appreciate and in some cases, enjoy change, I have a difficult time with permanent changes and large changes (such as moving to a new city or changing jobs). The number one thing I have learned to help me cope with this is to tell others that I am upset, what I need, and telling myself that it is okay to be frustrated.
Telling people the truth about my reactions and me has been my greatest tool in help me to maintain friendships and relationships. Because I have a difficult time with display of emotions (one person pointed out that if I did not say that I was falling asleep on my feet, they would not be able to tell looking at me), I have learned to speak my emotions and take actions (such as giving people hugs) to indicate how I am feeling. I have also learned to tell myself that it is okay not to express my emotions all the time, and that I am perfectly welcome to be stoic when I need to be. Most Asperger’s have a difficulties with be touched and it has taken a great deal of work and talk to express to people when it is okay to hug me and when I need my space. The lack of emotional affect has been my greatest challenge and has got me in difficult situation more time than I can account for. Emotional expressing is one of the most important ways for humans to communicate with each other and having a hard time expressing emotion leads to a large amount of misperceptions of how I am feeling.
There are number of frustrating things about not expressing my emotions to the same dramatic details of others around me. One is that if I do not seem to be feeling anything (displaying apathy) I have been ‘given’ emotions or told how I am feeling. Often the given emotion is no where near what I am actually feeling and it is frustrating to anyone to be told how you are feeling. The second is having other people deflect their emotional state on to you or having other react to you as if you are a mirror that they are watching themselves in and they do not like what they see. This behavior often is followed by the first frustration of having others tell you how you are feeling. The third frustration is in misinterpretation which happens often. Many misinterpret my tone or statement for a more dramatic emotion than is being conveyed. I have simple logical statement understood as being angry or rude, even through email and text message. The last frustration is being ignored because there is no dramatic show of emotion and as a result other assume that you are fine when you are not and need some one to ask “are you okay?”
My favorite trait of Asperger’s/ Autism is the ability to solve puzzles. Though many people enjoy puzzles and like to disassemble and reassemble puzzles, the Autistic brain will apply this to life and other events. Most Autistics are highly rational people in the way that they think and as a result, they will spend a great deal of time piecing information together as if it were a puzzle. As a result, many of them will develop the skills to form puzzled pictures and ideas together, drawing together lines of association. There are a handful that have used these ingrained and learned thought skills to organize their lives, cope with stress and become great scientists, inventors, and thinkers.
Autism Spectrum Disorders have a long way to go before it’s completely understood by most people in the world, but for the time being there is more interest and as a result, there is more research performed. I discovered that I am a high functioning Asperger’s a little over year ago and have found myself become a home-grown expect on the topic. However, the point of this paper was a means of expression from a person proud to be on the Spectrum of Autism. I was able to see that my brain is in fact different from others and from that I draw my strength, understanding and hone my talents. Though I am looking for ways to help deal with some of the unpleasant traits of Asperger’s such as high stress, social anxiety, and tunnel vision (literally), I feel confident that there are ways to do it without taking synthetic medications. At the moment there are connections being drawn from the supplement “choline” and coping with Autism. There is a brief article on ‘livestrong.com’ that is a good start to hopefully a growing body of information on the use of this supplement.
Learning to live with your self is a life long task and having an explanation as to why to stand out a little more than other people is a way to help. The final thought on this topic is a few words of advice. First, autistics need time, whether it is brushing teeth or thinking, they need to go at their own pace. Second, autistics do feel and deeply even if they are not always able to express those feelings in words or actions. And last, rational thinking is not a why of insulting you or not getting jokes. Most autistics are highly visual (see pictures more than words in their minds) and as a result the information does not come across as words or sounds would, result is a rational processing of information.
I read in one book that the numbers of people with Autism Spectrum Disorders is increasing to almost one in 100 people. Why the numbers have gone up is any one guess but it would be a help to see a study of the populations of world to see how many people have Autism on some level or another. With more information of the true numbers there might be better theories about the causes of autism as well as how to help people better cope with the frustrations in the future.
Dubin, N. (2009). Asperger Syndrome and Anxiety: A Guide to Stress Management. Dexter, MI: Thomson- Shore.
Iacoboni, M. (2009). Mirroring People: The Science of Empathy and How We Connect with Others. New York, N.Y: Picador.
Mesibov, G. B., Shea, V. & Adams, L. W. (2001). Understanding Asperger Syndrome and High Functioning Autism. New York: Kluwer Academic/Plenum Publishers.
Robison, J. E. (2011). Be Different: Adventures of a Free-Range Aspergian with Practical Advice for Aspergians, Misfits, Families & Teachers. New York: Crown Archetype.
Sicile-Kira, C. (2004). Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger\’s Syndrome, Pervasive Developmental Disorder, and Other Asds. New York: Berkeley Pub. Group.