Defying Stereotypes Since 1976

Posts tagged ‘Asperger’s’

Isolation, Loneliness, and the Angry Aspie? An Open Letter to the World and My Readers

While I have always tried to be truthful and revelatory when writing posts for this blog, in this post I am probably speaking with the most candor, bluntness, and with the rawest language I have used in a long time. I don’t see the need for a trigger warning, except that I am speaking about negative events and feelings I have been keeping private for a long time. Also, I will be using more profanity that my readers are used to seeing here on WWA. If that doesn’t scare you, read on. I should warn you that some of this may not read very cohesively and might seem like a very long rant, but I have had a need for a long time to say some of these things.

Isolation and Loneliness
When I was a little girl, I was a veritable chatterbox. Some of my earliest memories from around age five or six involve inundating other children, people my family knew, and my own parents with an explosion of words – what I was thinking or feeling, what I had been reading, things I’d seen earlier in the day that I thought were really marvelous, spectacular, or even beautiful, and so forth. I’m even guessing that some of these were lengthy descriptions of something related to my Aspie “special interests”. I remember Dad having to tell me to stop chatting and eat my food at dinner, as I would stop eating at some points and just start talking.

You probably wouldn’t think that the above description fits me if you were to meet me today. Yes, it is true that I can be very opinionated and expressive. In the past, I’ve not hesitated to “put myself out there” in terms of my poetry, my experiences with being an Aspie, or other things that interest me (anyone that’s chatted with me online about The Doors can attest to this). However, within the last few years I have been finding myself feeling more isolated and lonely than I have since I was a teenager in the small town in which I grew up, trying to negotiate the social landscape.

Believing that it was not wise to allow too much personal information about myself on the Internet, I chose not to speak of my experiences and feelings in this regard until now. In and of itself, this would not be a big deal. However, events were going on in mine and my fiancé’s lives that only worked to add distrust and paranoia to our already growing sense isolation. Our family was certainly of no help and in many cases, caused the very problems we were experiencing. Other events upon which I do not care to elaborate began to make us feel even less secure and more fearful. Although it may not seem obvious to those who know me from the autism and poetry communities, I was beginning to feel the need to close myself off and withdraw. And that, my friends, was where I began to lose the idea that I understood or had a true grasp on reality.

What does this have to do with autism or Asperger’s? Plenty. I’m sure there are many autistics or Aspies reading this right now who can identify with the feelings of isolation and loneliness of which I speak. While I fight for the emphasis of the positive things that autism can bring to our lives – our unique talents and gifts that enrich ourselves, our families, and our societies – I also believe in authenticity and honesty in revealing my personal and unique autistic experience. We need to be honest about the loneliness and isolation we may feel plus the difficulties we experience while navigating a neurotypical world. I figure it’s been long overdue for me to talk about this in my own life.

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Status

ATTENTION ASPIES/AUTISTICS WITH AN OFFICIAL DIAGNOSIS:

ATTENTION ASPIES/AUTISTICS WITH AN OFFICIAL DIAGNOSIS: I would like to talk to you. I am currently working on an article about autism diagnosis in adults. Please contact me via email — woman.with.aspergers AT gmail.com — if you are interested in being interviewed.

-Nicole

The Souls of Black Autistic Folk, Part I: An Introduction to Paul Robeson

And here is
Paul, the man made out of crossroads, seven or eight men
in one body. Call him Othello if you like. He is
voice-colored and fist-worn with Jim Crow’s black feathers
plastered to his knuckles. He has a sixteen track mind,
almost drowned by man-made lightning. He was a
serif font road sign: Poitier and Belafonte read him and
found their way to the stage. Here is Paul.
(an excerpt from my poem, “Tribe”)

I began this exploration of being African-American and autistic a few days ago by mentioning Paul Robeson, an individual where Black history and autism intersect. I had encountered the premise that Mr. Robeson had Asperger Syndrome in Norm Ledgin’s book Asperger’s and Self-Esteem: Insight and Hope Through Famous Role Models about two years ago and was immediately fascinated by it. While other African-American historical figures such as George Washington Carver and Benjamin Banneker are proposed to have been autistic, Robeson is the only African-American who to my knowledge has been analyzed for autistic traits using any sort of diagnostic criteria. And since my online journey began in late April 2010, I have noticed a distinct lack of the African-American presence in the online autism community. In an act of echolocation, I seek our presence to find, confirm, and perhaps reaffirm my own existence and reality as an African-American autistic. So Mr. Robeson, I have chosen you as my psychopomp for this journey.

Paul Robeson

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Who Are We? Women, Autism, and Social Mimicry, Part II

Some of you may remember the Women, Autism, and Social Mimicry survey that I conducted back in November of 2011. As I mentioned earlier, I was aware of my own use of “scripts” for social interaction and was intrigued about the phenomenon of social mimicry among autistic women. This survey was meant to “take a pulse” or to get a sense of how common this might be.

I posted part I of the results of this survey in December of 2011. Due to personal issues in my life, I have been unable to devote the amount of time I have desired to the WWA blog until recently. Now I have been able to post part II of the survey results (questions 5, 6, and 7), which deal with the amount of difficulty with social interactions that the respondents experiences and whose social behaviours they mimicked. Questions 8, 9, and 10, which concern the reasons why respondents mimicked social behavior, bullying as a motivating factor, and continued mimicking, will be posted in part III. (Note: I initially intended to post this in two parts, but opted to post in three to aid in ease of reading.)

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Q5. Amount of Social Difficulty Experienced as Children/Teenagers

Women who took the survey were asked about the amount of social difficulty they experienced growing up — examples of social difficulty cited in the question included difficulty in making friends, playing with others, understanding social cues/facial expressions/tone of voice, and decoding unwritten social “rules” in their families or peer groups.

Most of the women who took the survey reported that they experienced either a moderate amount (33.49%) or a great amount (55.5%) of social difficulty as children and teenagers. This is nearly 89% of the respondents — and it’s not surprising, considering difficulty with social interaction is one of the most difficult and painful aspects of Asperger’s or other autism spectrum conditions.

3.83% of respondents reported that they were not interested in social interactions with others as children and/or teenagers. 2.39% reported experiencing a minimal amount of social difficulty, and .48% reported no social difficulty at all.

I received a variety of interesting responses by those who chose the “other” option (4.31%). A few of these stood out at me:

  • “Depended on situation: severe problems with family and random strangers, only moderate problems with self-selected peer group.”
  • “I had a core group of nerdy friends in school who accepted me as quirky. It was after graduating that I found it close to impossible to initiate or maintain any sort of social life.”
  • “Great amount of difficulty when I tried, much of my life I wasn’t interested in even trying.”

I found the first response very interesting because it was true for me at various times in my childhood and teen years. It was mostly true between ages twelve to eighteen and I attribute the major reason for my social difficulty with family members to the dysfunctional nature of the family in which I grew up. I’ve found that dysfunctional families can be the worst in regards to enforcing conformity to “status quo” — I believe that this tendency belies an attempt to hide the dysfunction from outsiders and thus any behavior construed to be even remotely weird, quirky, or out of the norm is regarded with suspicion or actively discouraged. While no exact data is available on the number of autistics who might have grown up in a dysfunctional family system, I imagine that it would be easy (albeit ethically and morally wrong) for other family members to cast them into the “scapegoat” role due to the perceived odd behavior and other challenges that come with autism spectrum conditions.

Q6. Frequency of Mimicking the Social Behavior of Others

Survey respondents were asked how often and how much they mimicked the social behavior of others as a child and/or teenager. Most autistic women in the survey reported a moderate amount of social mimicking (40.67%) and 32.54% reported a great amount of social mimicking. Some respondents reported a minimal amount of mimicking (12.44%), while 7.18% said that they were not interested in mimicking the social behavior of others. Less than 1% of respondents (.96%) reported that they did not mimic others’ social behavior at all.

6.22% of respondents chose the “Other” option and provided some interesting answers when asked to write in:

  • “This, of course, was different from my mid teens when my autism developed into Asperger’s Syndrome. From age 22, I was made aware of the importance of making (or faking) eye contact, faking certain body language, etc. – as an adult, I mimic much more.”
  • “I mimicked to a very small degree as necessary, but I was not interested in doing so. Only did because it was necessary.”
  • “I didn’t realize I was doing this until recently, when I look back.”
  • “I didn’t even realize that there WAS any social behavior that I could have mimicked.”
  • “I did not seem to pick up behavior ‘in person’ well at all. I did learn some mannerisms from fictional characters in books.”
  • “Again I was too socially aloof to even know there was a requirement or that I was not like everyone else.”
  •  “100%, that’s all I did. Every action was a concerted effort at pretending to be the people around me.”
  • “I didn’t start mimicking until I was in my mid twenties.”
  • “Just observed as a young child; began to try out hypotheses about how to act at about age 6; have continued that approach lifelong. Do, observe results, modify or not.”

The results to Q6 indicate that a large percentage of survey respondents moderately or greatly mimicked the social behavior of others as children and teenagers. One might look at the amount of social mimicry as a continuum, with more of respondents skewing towards frequent mimicking.I’m being careful not to draw larger conclusions, but I find it this result very interesting. Might the large percentage of social mimicking, if translated into the same results for the larger population of autistic women, be one of the reasons many of us missed diagnosis? Dr. Tony Attwood seems to think so, but I think this question should be explored further.

A personal note: If I had answered this survey, I would have probably reported a minimal amount of mimicking — I didn’t really start doing this until I was 18 years old and at college, which is similar to a couple of the “other” respondents above. In my case, I was sick of being alone and ostracized as I had been throughout high school and thought that the way to end my loneliness and to gain friends was to become more extroverted, as I’d seen from some of my classmates in high school. I thought that once I was way from home, that gave me license to act in any way I wished. Unfortunately, I began to reject my introverted nature and developed a lot of behaviors that aren’t natively my own, which I am still trying to unlearn now.

Q7. Who Did Respondents Tend to Mimic?

(For this question, respondents were asked to select all applicable answers and were allowed to select more than one to answer this question. Totals may add up to more than 100%.)                                                                  

Judging from the responses, those autistic females who mimicked the social behavior of other people chose a variety of models. (5.38 % of respondents to this question said that they did not mimic the social behavior of others.)

A large number of respondents (52.98% collectively) reported mimicking the behavior of classmates, playmates, and friends. 25.78% used the behaviors of both male and female classmates/playmates/friends as their models, 22.95% chose to mimic the behavior of other female classmates/playmates/friends, and 4.25 % chose to mimic male classmates/playmates/friends.

Altogether, 32.58% of respondents reported mimicking the behavior of family members. 16.15% said that they chose both male and female family members to mimic, 10.48% said that they chose female family members, and 5.95% reported mimicking male family members.

Breaking down by gender, 41.93% imitated the behavior of people from both genders (family members, friends, classmates, and playmates) while 33.48% imitated females and 10.2% imitated males.

9.07% of respondents chose the “other” option and gave a variety of explanations. Many of them reported imitating fictional characters from books, television shows, and movies. Some reported imitating teachers, authority figures, and other trusted adults. Others spoke of imitating celebrities and other famous individuals. I can relate to all of this because growing up, I did occasionally imitate classmates – however, I imitated fictional characters and celebrities more often. For example, I was a big fan of the television show “Punky Brewster” and when I was around ten or eleven, I began to imitate Punky, down to the way she dressed. Among other models I chose were both Pipi Longstocking, Denise and Vanessa Huxtable from The Cosby Show and Michael Stipe, the lead vocalist of R.E.M.

A few interesting responses regarding gender manifested themselves in explanations of those who selected “other”. Some reported identifying with males more or exhibiting what is generally considered male behavior. One woman had this to say:

 “As an adult with Asperger’s Syndrome and having only the occasional companion through my life who always tend to be male, I mimic male behavior and really struggle to learn femininity or how to identify myself as ‘female’.”

 Of course, statements like these raise more questions. I’m a strong supporter of being oneself and not conforming to behaviors expected for one’s gender if those behaviors are not naturally native to oneself. I believe that part of the problem autistic women encounter (and which I have encountered myself) is that we are confronted with gender norms and roles of which we may be unaware of or with which we cannot or do not wish to conform. I know I have found it difficult to find my own identity as a woman for these reasons. I find this particular issue intriguing and will be dealing more with it on this blog later.

To Be Seen, or Not to Be Seen?

To be seen, or not to be seen?

I have spent a good percentage of my 36 years of life trying to figure out the answer to this particular question, which has expressed itself as a tug-of-war dialectic in my heart, mind, and soul. And the truth is, some days, I cannot decide which it is that I desire.

I was reminded of this struggle of my own upon reading this post on The Third Glance blog. The author speaks her own childhood growing up with autism and I found some of her account mirroring my own. I’ve quoted some of her post below to illustrate what I mean:

“She knew that if she complained, the consequences would be even scarier at home. When she first told her parents she wasn’t fitting in, she would get ‘talked to’, told she needed to try harder, that she needed to stop using big words, that she was obviously deficient. When that didn’t work, the responses got scarier, so she stopped saying anything…She learned that repeating the big words she heard in books would cause the other students to laugh at her and tease. She learned that no one else cared what happened in her books, or what she had just learned about her favorite things.”

I was reminded of my own childhood and my own struggles. Years before I knew that I was autistic, I knew that I was different. While I’ve said this before, I say it again now because there are people wandering around, like I was, without answers. There are children, teenagers, and adults who struggle with the decision between conformity and difference every day. Some, like the author of Third Glance and me at various points in my own life, choose to become invisible:

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Aspie Poem: Code

Dear H: for those of us to whom words
sometimes do not easily run, saunter, or even
amble: we speak in code. We think in code. We
construct our languages painstakingly
like little Tolkiens, separated by time, distance, and space:
but the Hobbits and the Elves ain’t got
nothing on us. We have the dexterity
of pictures, objects, or even
moving film to send messages to world,

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Conspiracy Theories, Autism, Fear, and Life on the Crazy Train

Mental wounds still screaming
Driving me insane
I’m going off the rails on a crazy train

— Ozzy Osbourne, “Crazy Train”

I’ve been thinking a great deal lately about conspiracy theories. Or, more accurately, I’m fed up with conspiracy theories.

My fiancé and I have been discussing these theories against the backdrop of world events for the last several years. On our dining room table there is a stack of books a couple of feet tall that I’ve been meaning to read about conspiracy theories and related subjects such as the premillennial dispensationalist interpretation of the Book of Revelation and the fundamentalist Christian worldview. To be quite honest, I’m mildly fascinated with conspiracy theorists and I’m trying to understand how they think: if I’d had the time to read these books lately, conspiracy theories would have become another special interest by now.

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Altered Prisms Art Show @ CCAA Museum of Art, August – September 2012

The Altered Prisms Art Show, an exhibit featuring works by artists on the autism spectrum, will be hosted at the CCAA Museum of Art from August 10 through September 30, 2012. This exhibit will be accepting submissions by artists until May 1, 2012.

Submission Guidelines:

  1. Only artists on the Autism Spectrum are invited to participate.
  2. Each artist may submit a maximum of 3 images. Submission is not a guarantee of acceptance into the show.
  3. The deadline for submitting digital entries is May 1, 2012.  Images in jpeg format must be sent to bjartworks@mac.com.
  4. Paintings or drawings submitted must not exceed 18″x24″ (not including the frame size) and can be in any medium. Exceptions for sizes may be requested by contacting Gene Sasse directly at : exhibits@ccaamuseum.org.
  5. All entries must be framed or professionally presented (frameless pieces must have canvas edges painted, with no visible staples showing, watercolors and drawings must be professionally presented under glass or plexiglass) and ready to hang with a wire on the back.
  6. Artists will be informed as to their acceptance into the show by June 1, 2012
  7. Intake will be July 29 and Aug 2. Artists are responsible for delivery and pick up or shipping costs both ways.
  8. Take down will be September 30 between 4-5 pm or October 4 through 6 between 12-4 pm.
  9. Entry Procedure & Format:
  • Digital Entries ONLY. Please adhere to the following requirements for size of digital images.
  • Format: JPG
  • Resolution: 72 dpi with 1000px as largest dimension saved as a jpeg quality 10
  • File Size: Not to exceed 2.0 MB for each image submitted
  • Color Mode: RGB
  • File Delivery: Digital images submitted via email or disk
  • File Name Format: lastname_firstname_title.jpeg
  • Without your name in the file name we will not know whose art belongs to whom once all the images are placed into folders for judging.

Life With Autism: CNN Invitation to Share Your Autism Stories

Hello folks! Here’s an opportunity to share your story about autism and Asperger Syndrome.

CNN is inviting people to tell their stories about autism for World Autism Awareness Day on April 2 as part of their CNN iReport series. If you wish to participate, you’ll need to make a 30-second video and upload it to CNN. Visit their website for more details or to participate.

Short Film, “Letter to My Father”, on YouTube

Meet the Nicholsons.

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You can see all of them in the short film for my poem, “Letter to My Father”, which I uploaded today to YouTube. This film was featured at The Art of Autism Exhibit. The poem will appear in the 2012 edition of “The Art of Autism”.

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