Running head: A CULTURE OF LONELINESS: ASPERGER SYNDROME

A Culture of Loneliness: Asperger Syndrome

Tiffany S. Campbell
Bowling Green State University
International Communication
COMM 4090
Dr. Lara Martin Lengel
May 1, 2015

A CULTURE OF LONELINESS: ASPERGER SYNDROME

Abstract

Persons with Aspergers Syndrome make up about 1% of the population. Of that 1%, most of
them are men. This paper wants to offer the female perspective, seeking to explain that
Aspergers is not just a disability, but truly a culture. People with Aspergers have their own
thought processes, a way of doing things, and even language. Presenting a resource for
ADULTS, because a majority of information regards children with Aspergers. Adults diagnosed
late in life or just finally accepting they are a part of the Aspergers culture can benefit from the
following. This paper offers a place for non-Asperger adults to begin to understand the Asperger
culture and see Aspergers outside of popular culture. Providing an opportunity to view
Aspergers as a way of life. Showing the life of pain, it can sometimes be. A life, full of
confusion and at times lonely.

A CULTURE OF LONELINESS: ASPERGER SYNDROME

A Culture of Loneliness: Asperger Syndrome

Hot water, burn baby, from the movie Rain Man or Dr. Sheldon Cooper is the standard
reference point of adult Asperger culture. One may even associate Dr. Gregory House of House,
M.D. or the latest Sherlock Holmes with Aspergers Syndrome. Within these examples, adults
with Aspergers are portrayed as exceedingly intelligent, geeky, weird, unemotional people that
have no need to be around other people and throw fits. Aspergers is more than those
representations.
Asperger Syndrome (AS/D) discovered over 50 years ago by Han Asperger, a pediatric
doctor from Vienna. Defined as an autism spectrum disorder (ASD), one of a distinct group of
complex neurodevelopment disorders characterized by social impairment. Additionally, the
clinical definition includes communication difficulties, and restrictive, repetitive, and stereotyped
patterns of behavior. ( Asperger Syndrome Fact Sheet, 2014). A more tangible definition
would be: a lifelong social disorder characterized by the lack of empathy, little ability to form
friendships, one-sided conversations, clumsy movement and intense absorption in a special
interest 1 (Klin, Volkmar, & Sparrow (Eds)., 2000).
Another important point to note is about 1% of the worlds population is on the autism
spectrum. More than 3.5 million Americans live with an autism spectrum disorder. It has
increased by 6-15% each year from 2002-2010. (Facts and Statistics, 2014) AS usually
diagnosed in children, and it is five times more frequent in males than females. 1 in 68 children
diagnosed in the United States of that 1 in 42 boys (Facts about Autism, 2015). One of the
reasons girls are harder to diagnose is that females have the ability to pretend that everything is
okay or normal. They accomplished this with coping and camouflaging skills (Attwood,

Personal emphasis

A CULTURE OF LONELINESS: ASPERGER SYNDROME

2008, p. 46). AS can also be harder to diagnose because of its comorbidities. Comorbidities are
the conditions that co-occur with the condition. 70 percent of people with AS have one comorbid
psychiatric condition, and 40 percent have two. Examples of comorbidities include: depression,
bipolar, AD/HD, and social phobias. It is not uncommon for AS persons have a learning
disability such as dysgraphia or hyperlexia (Bashe, 2014, pp. 6478).
As earlier mentioned, AS is most often diagnosed in children, although adults are
diagnosed later in life. While, the statistic is unknown late diagnoses occur often. Maturing as an
undiagnosed AS, is more painful than not knowing. Life as the weird kid, that does not want to
talk to anyone or to be avoided for lack of understanding is painful. Not understanding the reason
one does a particular thing, why people are upset, and why no one understands is also confusing.
Being turned away or misjudged by the common misconceptions are unclear and painful as well.
Thus, with personal experiences, interviews, and other scholars' research this paper seeks to
explain what classifies Aspergers as a culture. In addition, it seeks to understand how the
Asperger culture functions within the general culture, and the meaning of membership in the
Asperger culture.

A CULTURE OF LONELINESS: ASPERGER SYNDROME

Definitions
The concept of culture is broad and difficult to define, just as the following are. These are
terms and definitions used in this paper.
Alone separate from others: isolated, without anyone or anything else: not involving or
including anyone or anything else. Feeling unhappy because of being separated from other
people 2(Merriam-Webster, n.d.)
Asperger syndrome (AS) - a lifelong social disorder characterized by the lack of
empathy, little ability to form friendships, one-sided conversations, clumsy movement and intense
absorption in a special interest (Klin, Volkmar, & Sparrow (Eds)., 2000).
Aspie - an affectionate term for a person with Aspergers
Autism spectrum disorder (ASD) - a serious neurodevelopmental disorder that impairs a
[persons 3] ability to communicate and interact with others. It includes restricted, repetitive
behaviors, interest, and activities. A single disorder that includes disorders that were previously
considered separate- autism, Aspergers syndrome, childhood disintegrative disorder, and
pervasive developmental disorder (Autism spectrum disorder, 2015)
Communication- the construction of meaning through symbolic exchange (Lull, 2000);
verbal or nonverbal exchange between individuals 4
Culture- the set of characteristics which distinguish one group from another, which can
be merged with an ideology, collective articulations of human diversity (as cited in Pieterse,
2009, p. 47) The integrated pattern of human knowledge, belief, and behaviors that depends upon
the capacity for learning and transmitting knowledge to succeeding generations. The
characteristic features of everyday existence (as diversions or a way of life) shared by people
(Merriam-Webster, n.d.)
Lonely- sad from being alone, causing sad feelings that come being apart from other
people (Merriam-Webster, n.d.)
Neurotypical (NT) - a person not on the autism spectrum 99% of the population

Personal emphasis
Defined as child, but changed by author
4
Authors definition
3

A CULTURE OF LONELINESS: ASPERGER SYNDROME

Being Part of a Culture: When it is Hard to Maintain Relationships

Belonging is a basic human need. Belonging to a culture distinguishes you from others.
When a person has AS, they have a hard time belonging. It is a common misconception that
Aspies do not desire to belong. Aspies have the want to have the connections just like anyone
else. In fact, they value the friendships and relationships more than anything. They just have a
hard time forming and maintaining the relationship (Bashe, 2014, p. 375). Being an Aspie
myself, I understand the value placed on friendships. I also understand how hard it is to maintain
the relationships. I do not have very many people in my life I would call a friend. There are
people that I talk to, the people I talk to more than others, and everyone else. As far as friends I
think I have four at the most and depending on how I feel that day. Observing the hardship not
only within myself, but with others in the culture we can relate to Bashes statement.
Lacking the social skills to understand nonverbal cues, AS people have a hard time with
what NTs would call simple and polite. For instance, knowing when it is our turn to talk,
showing any interest in others activities, or even fully comprehending the meaning of love can
be difficult for AS people. Other contributing factors to the problematic personal relationships of
the AS person may include and not limited to: emotions being confusing, uninteresting, or nervewracking. The AS person may prefer to stay home, and easily upset by changes in routines and
transitions (Stanford, 2003, pp. 2627). We tend to have one-sided conversations. We hyper
focus or get so excited about what we have to say we forget that it is supposed to be the other
persons turn. During an interview, Susan, an Aspie told me she once had an hour

A CULTURE OF LONELINESS: ASPERGER SYNDROME

conversation and then three days later she realized the other person had never spoken (personal
communication, 2015). This apparently lacks an emotional connection.
Not being able to fully understand emotions causes a problem with AS and NT
relationships. For instance, one of my actual friends was sad, and I felt as if he had been for too
long and needed to get over it, so I stopped interacting with him. It hurts his feelings. In
situations like this NTs feel emotional and affection deprivation(cited in Attwood, 2008, p.
307). These actions are not intentional, but they happen.
Another reason that it is difficult for the AS person to forge a friendship is TRUST! Trust
can be hard to obtain by an Aspie. An AS person expresses how much they like a person by how
much they trust them. Since the AS person does not read non-verbal signals and they sometimes
take things literally, lying to them is effortless. Once they have been lied to or been blatantly
deceived they learn the skills to handle non-trustworthy people (Aston, 2003, p. 27). For myself,
telling a person how much I trust or feel safe with them is the most powerful and exceptional
words I can utter. It is me telling a person I will do anything for them, my heart forever, even if
broken, will always be theirs. That is the case of any relationship. When I asked a group of AS
people what trust meant to them, 70% without hesitation said, Everything! Joe went on to say
If I cant trust you then I will not talk to you. If I find out I have been lied to once, then that
means everything was a lie. I dont like liars (personal communication, 2015). I have to agree
with Joe. As a culture Aspies are honest people, a bit too honest; yet, at times they can be
inadvertent liars. Not to be lying for the sake of lying, but storytelling that makes one the
hero. Lying is a way of fitting in or escaping reality. It can also be a way to deal with extreme
stress or loneliness (Attwood, 2008, pp. 2526).

A CULTURE OF LONELINESS: ASPERGER SYNDROME

Aspies are upset easily by changes making it hard to maintain relationships. It is also a
common misconception about persons with AS, being violent people. The AS person may be
feared. The fear can sometimes stem from just the outward appearance of an AS person. AS
people have a gaze or stare. Most tend to avoid eye contact and when they do make eye
contact it is too long, or it is indirect eye contact. This lack of, intense, or indirect eye contact
makes an NT feel uncomfortable or as if they are being ignored (Bashe, 2014, pp. 2021). The
lack of eye contact comes from a sensory issue that affects Aspies.
AS people have sensory, tactile issues. It can range from a sensitivity light, sound,
touch, taste, smell, or a combination. When stimulated, an AS can have sensory overload
(Attwood, 2008, pp. 271272). This overload is a very anxious, fear-filled experience. Upon
having this experience AS persons deal with it in a variety of ways. Children may completely
melt down and throw a tantrum. An AS adult hopefully has learned coping skills and will have
other ways to soothe themselves, sometimes including a complete shutdown. In general at this
point the stereotypies (repetitive motor movement), or stims (self-stimulating behavior) are
used to combat this overload. Examples of this are hand flapping, finger flicking, rocking,
spinning, and so on (Bashe, 2014, pp. 2022).
Personally, I do not look directly at people. I find a distant object or several different
objects to look at in the persons general direction. Pointed out to me, I do not often smile, which
makes others think I am mean. Sometimes makes them think I will assault them without
provocation. That is not the case; I do not look at people since I try to figure out all the things I
should know. I try to figure out the persons non-verbal communications. I try to figure out if
they know I am different. I am looking to see if they are looking at me and try to read their mind
of what they are thinking about me. This becomes painful, because of the sensory overload. Due

A CULTURE OF LONELINESS: ASPERGER SYNDROME

to all of my senses being affected tactically focusing can be a problem, especially when I am
hyper-focusing on something. I have to focus that hard to communicate. The overstimulation
comes in, and I have to fall to my stims. I am a rocker, a finger flicker, and under extreme
conditions a crier. Seeing my stims makes NTs uncomfortable, nervous, and sometimes scared.
I love my church and participate regularly. It is a large church with three campuses and
because of my coping and camouflaging skills lots of people know me. People view me as a very
outgoing and happy person. They tell me all the time how my smile or kind words make them
feel better. Therefore, when they found out, I have Aspergers they were shocked. The way a lot
of them found out was when I had a meltdown at church.
It was the day the campus I attend moved into their new building. There was so much
new, I could not take all the changes and break down. I cried and just rocked. It made
everyone around me try to comfort me and figure out what was going wrong. Wanting to be
alone to calm and refocus, I got very heated with them.
After I had calmed down, I was told how much I scared them. They did not know what to
do. It was out of character for me. My children tell me how nervous they get when I start to rock
and flick my finger. They have never seen a full blown meltdown, but the one they saw really
scared them. Others being afraid of me upsets me, making it hard to maintain a relationship.
Knowing there is a culture of people dealing with the same thing makes it better.

Being an Aspie: You are Not Alone

This paper has touched on the difficulty of being a part of a culture when it is hard to
maintain relationships. As defined above maintaining a relationship is not what makes a person a

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10

part of a culture, particular characteristics are. One of the distinguishing qualities of the
Aspergers culture is difficulty maintaining relationships.
People on the autism spectrum have some similar and different experiences. There is also
a difference in opinion of if a person suffers from autism and is in need of a cure. I have been
very thoughtful in not using the word suffer. I believe Aspergers is not something one suffers
from, but autism is a part of what makes you, you, just like the color of your skin, your height,
your hair or eye color. Unlike your hair or eye color, autism is something about yourself you
cannot change. It is not an illness it is a neurological developmental disorder. Some NTs believe
that we are something to be fixed or healed. However, this paper is focused on the individuals
within the culture and how they feel. What does it mean for a person on the autism spectrum to
be autistic?
I asked a group of people with Aspergers from all over the country 5 what does it mean
to be an Aspie? Our cultural answers were quite similar. One of the first things we have in
common culturally is the sense of being alone. Sam from the United States said, Being alone
and scared feeling distant from my partner,(personal communication, 2015) is part of being
an Aspie. Karen from the United Kingdom said, I feel alone and scared. People think Im
yampy [crazy]. It does me [my] head in (personal communication, 2015). Mel from the United
States said, Just being all alone and no one understands you or how you feel (personal
communication, 2015). I recognize the feeling of being alone. I can be in a room of people and
feel all by myself. Kaitlin from Australia said, One feels alone in a room full of people
(personal communication, 2015). We learn how to hide these feelings of loneliness when around
people. I know how to laugh and smile, but inside I am sitting in a corner of a dark room. There

The answers were given both orally and written. People with autism have grammatically problems. This is
intensified when they are bi-lingual (Hughes, 2012)

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is this common sense of being alone amongst the culture. Thus, making us not alone and part of
the Aspergers culture, a culture of loneliness. This is only one of the examples I was given.
Not only do we feel alone, but some are better communicators than others. We learn to
hide and cope with our lack of social skills in different ways. Like Mac from United States who
states I can function socially thanks to 4-H [Head, heart, hands, and health agriculture club] and
studying people. But, every moment is a constant battle (personal communication, 2015). I have
always been in something requiring social skills. I was involved in cheerleading and dance for
eighteen years. I was also a girl scout for about seven years. I was never good at reading faces
and emotions, but thanks to being a part of the Deaf community in which facial expressions are
essential for communication that has improved. An example that I read was hilariously accurate
of how some Aspies can hide their lack of social skills better than others.
Want to know about social impairment? Im still steaming about the other nightwe
went to a party for my work. All of my colleagues were there. He talked too loudly.
Hed only talk to people about the new handheld device hes working on, then he
walked away when people tried to talk back to him. He complained about the catered
food, saying it was gross. He complained loudly about the temperature of the room.
He stood so closely to people that one woman thought he was making an advance on
her and, the worst, he passed gas loudly while talking to my boss. Now thats social
impairment (Stanford, 2003, p. 70).
I am very grateful my mother unknowingly had the wherewithal to help me with my social
graces. Although, I am sure the man in the story was genuinely apologetic and embarrassed.
Being in crowds can be such a stressful and painful place.

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Mel expressed Always playing pretend. Having people tell me that I am not like the
other people with autism they know. Smiling and pretending that didnt hurt me (personal
communication, 2015). Ever since being told that I do not smile much when I am around people
I have to think continuously about smiling. That adds to the list of things I have to focus on, with
each addition becoming more and more painful. Freddy from Canada describes Pain with
overstimulation is like an itch you cant scratch turning into a burning then being set on fire.
[Its] Pain within myself for being selfish and irritated. The pain of never being normal. Having
a bunch of other people around [not] like me is pain. Having my wife that understands me is not
pain. Having a wife that takes [on some of the] pain and split[ting] it (personal communication,
2015). Freddy has a wife to provide solace and a sense of relief from the pain, but not all Aspies
have that.
Some turn to animals for a sense of comfort. Mel stated she [goes] going home and
crying myself to sleep with my dogs (personal communication, 2015). Kaitlin said I only have
animal friends as they usually dont let you down or not love you for just being you (personal
communication, 2015). As I grew up in a house with large animals that were not of any comfort
to me, stuffed animals and books were my comforts. I still find solace in books, but God has
taken the place of my stuffed animals. Plus I know I can always turn to my sister for comfort,
because of the level of trust, comfort, and lack of judgment. As outlined animals are loyal and
nonjudgmental making them an excellent source of relief among the members of this culture. A
majority of the people interviewed mentioned maintaining relationships with other humans is
challenging.
Relationships are a common struggle, because a common myth is AS people do not have
empathy, feelings, or want relationships, which stated before, is far from the truth. Some Aspies

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cannot pretend well enough to make and maintain a relationship. They want friendship or notice
they need a friend, but cannot maintain one over time (Stanford, 2003, p. 99). Kaitlin asked,
And how one is to get friends and keep them when not educated or shown what is correct
[interpersonally]? Not ring [call] them weekly or what is the protocol and social etiquette
(personal communication, 2015). Mel finds no one understands what joy and stress that it [is]
all [at] the same time. Not having anyone understand, (personal communication, 2015) is what
makes sustaining relationships so hard. Karen also wants to know Why cant anyone
understand, (personal communication, 2015) how difficult it is to have Aspergers and uphold a
relationship. I am a communicator, very stubborn and struggle with the relational aspect of life.
More so of being in love long term relationships than any other relationship. That is because I
have to share my life, feelings, thoughts, and emotions with someone on an intimate level.
Intimacy is a skill I do not think I will ever master. As an Aspie, I have a hard time
understanding emotions. Growing up I learned to share my feelings was not such a good thing. I
was always made to feel insignificant or that I was overly excited for no reason, which led me to
shutting down and not producing any emotions outside of anger, sometimes joy.
Conclusion
I read something an Aspie said I thought was so very profound Because we alienate
ourselves at first, and then society alienates us, we have no good reason to seek out friendships
other than the basic human need to belong. It is unsurprising to me that many with Autism and
Aspergers alienate themselves by choice. He continues: We want what anyone in their right
mind wants. We want to be loved. And we are stubborn people (Gayamali, 2012). Wow! With
that being said to conclude, we stand in the background, scared, alone, and trying to fit into the
foreground. Globally, people share the same feelings and painful experience when living with

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14

Aspergers. While reflecting on the interviews and scholarly research I found that within my own
encounters, other people with Aspergers share occurrences and a culture is built upon the
foundation of having shared ideas and characteristics this proves Aspergers is a culture. For all
that people with Aspergers feel, they are alone yet, somehow it brings us together. Together in
this culture of loneliness.

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Bibliography

Asperger Syndrome Fact Sheet. (2014). Retrieved April 15, 2015, from
http://www.ninds.nih.gov/disorders/asperger/detail_asperger.htm
Aston, M. (2003). Aspergers in Love Couple Relationship and Family Affairs. New York: Jessica
Kingsley Publishers.
Attwood, T. (2008). The Complete Gude to Aspergers Syndrome. Philadelphia, PA: Jessica Kingsley
Publishers.
Autism spectrum disorder. (2015). Retrieved April 19, 2015, from
http://www.mayoclinic.org/diseases-conditions/autism-spectrum-disorder/basics/definition/con20021148
Bashe, P. R. (2014). ASPERGER SYNDROME: The OASIS GUIDE (Expanded T). New York:
Harmony Books.
Facts about Autism. (2015). Retrieved April 16, 2015, from https://www.autismspeaks.org/whatautism/facts-about-autism
Facts and Statistics. (2014). Retrieved April 16, 2015, from http://www.autism-society.org/whatis/facts-and-statistics/
Gayamali, C. (2012). 5 important facts and misconceptions about Asperger s syndrome. The Week.
Retrieved from http://theweek.com/articles/469278/5-important-facts-misconceptions-aboutaspergers-syndrome
Hughes, V. (2012). Study finds grammar tics in children with autism. Retrieved April 28, 2015, from
http://sfari.org/news-and-opinion/news/2012/study-finds-grammar-tics-in-children-with-autism
Klin, A., Volkmar, F. R., & Sparrow, S. S. (Eds.). (2000). Asperger Syndrome. New York: The
Gulford Press.
Lull, J. (2000). Media, Communication, Culture: A Global Approach. (P. Press, Ed.) (Second).
Cambridge, UK: Blackwell Publisher Ltd.
Merriam-Webster. (n.d.). Retrieved from http://www.merriam-webster.com
personal communication. (2015). Personal Communication.
Pieterse, J. N. (2009). Globalization & Culture Global Melange (Second). New York: Rowman &
Littlefield Publishers, Inc.
Stanford, A. (2003). Asperger Syndrome and Long-Term Relationships. London and Philadelphia:
Jessica Kingsley Publishers.

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Appendix of Referred Personal Communication

Kaitlin (Australia)
You think there is something wrong with you as you think you are different. Like I ask
Why does everyone say how are you and they dont give a stuff? Why is there a certain way
to do stuff? Surely a better way would improve stuff and why? And how one is to get friends
and keep them when not educated or shown what is correct. Not ring them weekly or what is
the protocol and social etiquette Feelings are hard to express. One feels alone in a room
full of people. Bullied as a child and adult. I had only animal friends as they usually dont let
you down or not love you for just being you. You might be a hoarder or OCDer or a counter,
or pancer or afraid of crowds, or dont want to leave the house. Want to write stuff down cos
you are slow at remembering and planning. Depressed or feeling better dead than living. The
world is a horrible placeout there there is light at the tunnel We must support each
other as only an Aspie knows.

Mac (US) Im not sure. I am 45 and didnt even know what AS was until 6 or 7 years ago when one of
my daughters teachers figured out my daughter was. Ive spent my life feeling like a
defective toaster. I can function socially thanks to 4-H and studying people. But, every
moment is a constant battle. I am still looking for a job that I can be happy with and make a
living (personal communication, 2015).

Sam (US)Being alone and scared. Not knowing what I am supposed to do. Having people think I do
not care about their feelings when that is all I care about. Feeling broken and never special.

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17

Knowing there is stuff I am really good at, and no one cares. Feeling very distant from my
partner. Being happy with myself, because I know there are others like me

Mel (US)Always playing pretend. Having people tell me that I am not like the other people with
autism they know. Smiling and pretending that didnt hurt me. Trying to give people a break,
because they do not understand what it is like being use. Going home and crying myself to
sleep with my dogs. Not having any true friends to talk to. Just being an alone and no one
understands what a joy and stress that it all the same time. Not having anyone understand.

Freddy (Canada)PAIN!!!!!!!!! Being full of pain all the time. Pain with overstimulation is like an itch you
cant scratch turning into a burning then being set on fire. Pain within myself for being
selfish and irritated. The pain of never being normal. The pain of being bullied and the pain
of finally fighting back. The pain of the constant pressure to explain to people what it is
wrong me. Having a bunch of other people around like me is pain. Having a wife that
understands me is not pain. Having a wife that takes the pain and splits it. Thats all I want to
say.
Karen (UK)I feel alone and scared. It makes me barking. People think Im yampy and it does me head in.
I dont fancy it. I just want to ha[v]e people understand I just fancy things just a little more
passionate. Im not trying to be cheeky it just happens. Why cant anyone understand?