Recent events and some self-reflection have led me to ask some serious questions about women on the autism spectrum and the phenomenon of social mimicry. Throughout my life, I have found myself using “scripts” for social interactions – and what I mean by “scripts” are those habits, practices, and routines that I use within various situations. However, I have never found any of them to be natural and even as I have gotten older, nothing in this arena has become natural – these habits, practices, and routines still feel like “scripts”.

Two things caused me to question my use of “scripts”. First of all, while watching Phillip Zimbardo’s presentation at Harvard University on his book, “The Lucifer Effect” (WARNING: GRAPHIC IMAGES AND TRIGGER-POTENTIAL MATERIAL ARE IN THE VIDEOS), my fiancé and I encountered a startling fact during part four of the presentation: in an experiment in the early 1970’s in which students were told that they were to give electric shocks to a puppy to aid him in learning, 100% of the female students continued to shock the puppy all the way up to perceived dangerous levels (I say perceived because as Zimbardo reveals during the presentation, the puppy was only being given a light electrical shock). In contrast, 50% of the male students in the study continued to shock the puppy up to the perceived dangerous voltages. I was disturbed and taken aback for two reasons: 1) this certainly might challenge the notion that women are more compassionate and caring and thus would NOT shock the puppy, and 2) what this might reveal about women, conformity, and any tendencies to consent to following perceived expectations even if harmful to oneself or someone else. Dr. Zimbardo went on to say that the high rate of compliance was possibly linked to the tendency of women of that era to obey male authority (as they were conditioned to do even decades ago). However, the question remained with me: do women, autistic or otherwise, tend to “go along with the crowd” and cave into perceived expectations to receive favor or acceptance?

 My mind immediately turned to my thoughts of social mimicry, my “scripts”, and the reasons I use them. Before this presentation, I had been wrestling with questions of self-acceptance as well as trying to gauge my own perceived need of acceptance by others. These imperative questions included:

• Do I really need to fit in with others or be accepted by them?
• Is it in the best interest of an autistic or Asperger women to learn how to be socially “normal” or should she simply be the person that she is, even with the social awkwardness?
• Are social skills simply tools to achieve a desired result, or are they part of one’s person, heart, and/or identity?
• How genuine can using “scripts” be if they are not the natural behavior of the person in question?

Secondly, I remembered all of the conversations I’d had with my fiancé about habit and mindfulness, as well as our observations that the women in our lives had often “went along with the crowd”, going along with friends, coworkers, classmates, or even other family members and often failing to stop and think about the reasons for their actions. What also brought this point to bear recently was this post from a former classmate of mine about ritual, habit, and the importance of stopping and thinking about one’s action. All of this has really caused me to stop and ask serious questions, including:

• Are women more prone to seek social acceptance?
• Is this true of autistic/Asperger women, and if so, why?

I then recalled that Dr. Tony Attwood had suggested that women and girls on the spectrum have a tendency to attempt to fit in social by observing the accepted behaviors of their group or culture, and then imitating them. Now, my curiosity was certainly aroused and I decided to begin investigating these questions in order to find answers – which not only pertain to myself and my own life but may pertain to other women in the spectrum. You could say that the big, burning question in my mind is: WHY?

To begin my investigation, I asked women on the spectrum last month to take this survey about themselves and their social mimicking tendencies. 209 women responded before the survey closed at 12:00 AM EST on Saturday, December 10. I would like to extend a heart thanks to those women for their generous participation and their willingness to reflect on these questions regarding their own behavior.

The Results, Part I

In this post, I am releasing the part 1 of the results of the Women, Autism, and Social Mimicry Survey. I will reveal the general demographics of the respondents, with the data about social mimicry in the next post to come.

Q1. Type of Autism

The majority of respondents — 86.12% — reported that they had, or thought they had, Asperger Syndrome. Other responses are as follows:

PDD-NOS – 4.78%
Classic Autism – 4.31%
Other – 3.83%
Other type of Autism –0.96%

“Other” write-in responses varied but included items such as “unsure – somewhere on the spectrum” and “atypical spectrum disorder, Asperger-like”.

Q2. Age of Respondents

There were nearly equal numbers of respondents in the 35 – 44 year-old group and the 45 – 54 year-old group (32.54% and 30.14% respectively). Other responses are as follows:

18 – 24 years old — 22.49%
55 – 64 years old —  9.09%
65 years old and above — 5.26%
13 – 17 years old — 0.48%

Q3. Diagnosis Status

 Many of the respondents — 50.72% — indicated that they had been diagnosed with autism, Asperger Syndrome, PDD-NOS, or another type of autism spectrum disorder by a professional.

29.19% of respondents indicated that they had diagnosed themselves with a spectrum disorder.

14.84% indicated that they were considering the possibility that they have an autism spectrum disorder but have not yet been diagnosed nor have they self-diagnosed.

5.26% responded with “Other” and indicated a variety of situations, including: an inability to obtain a professional diagnosis due to health insurance issues; conflicting diagnoses; comorbidities in addition to a possible autism spectrum diagnosis; and belief that they may be on the spectrum based on the diagnoses of their own children.

Q4. Age of Diagnosis, Self-Diagnosis, or Consideration of Possibility of an Autism Spectrum Condition.

Many of the respondents — 33.49% — indicated that they were diagnosed or self-diagnosed between the ages of 25 and 34. 27.27% of respondents indicated that they were diagnoses or self-diagnosed between 35 and 44 years old

Other responses include:

45 – 54 years old — 12.44%
Below age 18 — 11.96%
18 – 24 years old — 11.48%
55 – 64 years old — 3.35%

Interestingly enough, none of the respondents indicated that they were diagnosed or self-diagnosed at age 65 or older.

Basic Profile of the Respondents

Based on the responses above, I’ve constructed a general profile of most respondents who took the survey. Again, we have the caveat: if you’ve met one person with autism, you’ve met one person with autism. However, the results indicate a few general patterns and some information about typical respondents.

 Mostly, they were women with Asperger Syndrome: many had an official diagnosis with a significant amount of self-diagnosed who responded to the survey. Typically, they were middle-aged women, with about even numbers of Generation X and Baby Boomers (please forgive the terminology – I am aware of the debate as to where these generations begin and end). Finally, many of the women were diagnosed or self-diagnosed between ages 25 and 34, with an almost even number diagnosed in the beginnings of middle age (35 – 44).

One question I pose about the respondents is why these particular kinds of autistic women responded to the survey. I would propose that like myself, they are middle-aged women with Asperger Syndrome diagnosed in recent years who have sought community on the Internet to connect with each other and understand their own experiences. I am also curious to know how much of the autism community these women comprise and am interested in the results of further exploration.

A Few Other Notes

The limitations of my type of Polldaddy account did not allow me to ask more questions, so this survey is to be taken as an informal attempt to find out how widespread the phenomenon of social mimicry is amongst autistic and Asperger women, when the mimicry began, who the women mimicked, and to elucidate the reasons why.

As you can see, I collected a basic amount of demographic data to in order to compose a picture of respondents. Due to the international nature of this survey, I did not ask for racial/ethnic/nationality data. However, at some point, it would be interesting to survey different autistic women from different racial, ethnic, and national groups to see if the results differ from group to group, as culture can play an impact on this kind of behavior. I also did not ask about differences between cis- and trans-women, as I feel that this may also require a follow-up study to determine what, if any differences exist between the two groups.

Coming Up Next

In part II, I will post the results of the remaining six questions of the survey. In future parts of this series, I will offer some analysis based on the results and further research. Please stay tuned as I continue on this fascinating journey.

Until Next Time,

Nicole

Despite recent events, I am carrying on with an effort to research the issue of women, autism, and social mimicry. As I have mentioned before, Dr. Tony Attwood suggests that women and girls on the spectrum have a tendency to attempt to fit in social by observing the accepted behaviors of their group or culture, and then imitating them. I am curious about this phenomenon of social mimicry amongst women on the spectrum and would like to find out how common this is.

I invite women on the autism spectrum (both officially diagnosed and self-diagnosed) to take my Polldaddy survey. It is a short, ten question survey intended, and both cis- and trans- women are invited to participate. Please click the link below to go to the survey (which will pop up in front of your browser window). If the button below does not work, you may link to the survey directly at: http://womanwithaspergers.polldaddy.com/s/new-survey.

Please pass this on to other autistic women! My goal is to find at least 100 to take the survey.

UPDATE: I’m keeping the survey open until midnight on December 10, 2011 to give more people a chance to take it. There’s been a rather large response to the survey — thanks to Autism Women’s Network, Autism Blogs Directory, The Thinking Person’s Guide to Autism, and Canddi on Facebook for helping to spread the word.

Take the Women, Autism, and Social Mimicry Survey

-Nicole

Unfortunately, my domain, womanwithaspergers.com, has be re-registered by another party and no longer belongs to me. The WWA blog is a victim of domain drop catching. I plan to register another domain within the next week or so.

In the meantime, please use http://womanwithaspergers.wordpress.com to reach this blog.

UPDATE: domain mapping is turned off, so this should fix the problem of the ability to read some posts. I will be cleaning up links throughout the next week, so if you click on a link to some older content and it does not go where it *should* go, please be patient with me. This will be fixed soon.

Thank you,

Nicole

A few things to think about this week:

1. Bullying is a widespread problem and can affect anyone regardless of race, class, nationality, gender, sexual orientation, or ability status.
2. Bullying is a common problem for autistic children. Estimates of the amount of autistic and Asperger children who are bullied run anywhere from 40% to as high as 90%. (See this story in the Boston Herald and this citation by the National Autistic Society UK.)
3. Bullying does not only affect children. According to the Workplace Bullying Institute, around 35% of workers have experienced bullying firsthand.

I’d also like to mention some of my writings about bullying: “Workplace Bullying and the Autistic Employee” and “Why Me?“, two parts of a to-be-completed series I authored about autism and workplace bullying.

I’ve also had my own experiences with bullying, mostly encountered as a child and teenager. One of my earliest memories of being bullied is from third grade. I attended a school in the district that had more special education offerings than the rest of the schools, and I needed speech therapy due to a bad ear infection which made me mispronounce the diphthong “th” as the letter “d”, amongst other things. Oddly enough, that’s not why I was the target of bullying, and to this day, I can only guess why the kids in question chose to pick  on me. At that age, with less than average experience being around other kids (due to our frequent moves) and no other siblings, I lacked social experience with other kids. That, plus the social foibles and difficulty reading other kids that Aspie children are prone to, were likely a recipe for disaster. I was singled out as the “weirdo” and was constantly asked if I was retarded. I never knew how to answer my tormentors — I simply froze in fright and said nothing. After one disastrous incident where I was teased and provoked until I bit the kid who bullied me, I chose to play alone for the rest of the school year with the exception of one boy, Lance, who I still felt comfortable around (and looking back in time’s mirror, I half wonder if he was also an Aspie too — but that’s a whole ‘nother post).

That summer, we moved to another city, and I encountered bullying again in the schools I attended. This happened again when we moved across the country and I attended yet another new school for fifth and six grade. But the worst of it I encountered during junior high and high school. As I look back, I consider it a bit of a miracle that I not only survived, but that I do not carry more scars than I do now.

After my parents separated, my mother and I moved to Middletown, Ohio, where I attended the last half of sixth grade, junior high, and high school. It is small town with a large steel mill, a small population (I believe in the 40,000 range when I last lived there), and a rather cliquish atmosphere at the time — everyone had known each other since their youth. To make matters worse, I was a multiracial kid in a town which was rather segregated socially in terms of race — white and blacks usually did not socialize together, and the other multiracial kids simply identified as black; but I’d been used to growing up in neighborhoods where whites, blacks, Hispanics, Asians, and First Peoples lived side by side. And I had undiagnosed Asperger’s and displayed many on the laundry list of Aspie traits: social difficulties, inability to read people, narrow interests, and higher than average vocabulary.

It wasn’t long before I was the target of bullies. It mostly began in seventh grade and persisted until my senior year of high school. In my case, it was a few individuals who persisted in making my school life a living hell throughout those five or six years of my life. The black bullies made fun of me for “acting white” or “talking white” because of my vocabulary. The white bullies made fun of me because of my hair (or lack of interest in styling it), my narrow interests, and even my patterns of speech. I was shoved into water fountains and lockers; provoked to cursing one of them out in front of a teacher (which landed me into in-school detention); played tricks on; and excluded. I sought solace in my books, my writing, and my inner fantasy life and tried my best to hold on until I graduated and left.

As an adult, I have tried my best to heal from both the bullying at school and the bullying/abuse I experienced at home. Sometimes, thinking about these memories is like pulling shrapnel out of my skin — it hurts, and I can see the visible wounds that each piece leaves behind. Writing about this pain is one way I try to reckon with it. I am slowly healing, but it has only been recently that I have been able to begin *truly* conquering my suspicion and fear. My goals are to be less paranoid about what people think and say about me and less likely to wonder if tricks or plots are being executed behind my back; these fears generally fall into the “disconnection and rejection” domain of early maladaptive schemas that I discussed in this post (part of a continuing series on stress and anxiety), which include beliefs that the world and most, if not all, people are generally untrustworthy, cruel, and will only purposely hurt or reject.  Unfortunately, the kind of bullying that autistic and Asperger children encounter commonly help form and/or reinforce these kinds of negative core beliefs and the distrust, fear, and paranoia that accompany them.

I offer this poem, “High School Jungle“, as an impression of my experience of having been bullied. I sincerely hope that during this week and beyond, awareness can continue to be raised about the problem of bullying. Too many hearts have been broken and too many lives have been lost to bullying, and it needs to stop.

-Nicole

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”.

I have posted a few new pieces for Autistics Speaking Day, which is November 1, 2011. Check out the links below for my contributions this year:

• “Threads” (Poem)
• “Finding One’s Voice: Art, Autism, and Communication“
• Autism and Asperger Poetry at Raven’s Wing Poetry

Enjoy…and speak up on November 1!

-Nicole

So much of the dialog about autism focuses about how we as autistics cannot and do not communicate. I’ve noticed that the emphasis seems to be on our capability (or lack of) to communicate with speech, and I sense an underlying assumption that limits human communication to the realm of speech. Besides the distinction of high-functioning versus low-functioning (which I think are somewhat limiting concepts), verbal versus non-verbal serves as yet another division line between autistics. I feel that the emphasis on verbal communication in autistic people promotes a severely limited idea of how autistic people can and do communicate which does not allow for alternate methods.

So, leaving aside speech, what do we have? When speech fails us, we find alternative methods, whether consciously or not. I believe strongly in the power of art to communicate what perhaps cannot be expressed adequate or at all by normal methods. The preponderance of autistic artists – poets, writers, musicians, visual artists, and others – evidences a capability to tap into other, non-traditional means to say what we wish and what we mean.

What Is Communication?

I’ve been thinking about the broader concept of communication and reaching back to my undergraduate days studying communication – both mass media and interpersonal communication – and remembering a few basic premises that I learned during my studies. Communication, as I recall it being defined during these studies, consists of: a sender, a receiver, and a channel, with the receiver sending feedback and noise as a possible interference – and communication can be implicit or explicit, written, verbal, or non-verbal (body language, for example). This definition is very broad and inclusive of various methods of communication.

Examining myself, I can identify the various ways I communicate to others. Since I am verbal, I can use speech. Sometimes, however, I find speech (especially unscripted speech) somewhat limiting – though I have an extensive vocabulary containing what might be called “low incidence” words, there are times I just cannot access mentally what I want and need to express myself. Judging from what I have read about other Aspie’s/Autie’s experiences with selective mutism, I do not believe that I am alone. I feel that I have a need to be precise, to find the exact words to express the exact thought in my head. Otherwise, I am not sure that my message is understood.

Then of course, these is body language. I find that my use of body language is somewhat limited. Going back through my diagnosis report from last year, the clinician who diagnosed me with Asperger’s also noticed this limitation. Expanding out to other values such as tone of voice, even those items can convey messages. But in my case, I also recall that others have mentioned my tendency to speak in monotone. Being as I regularly read my poetry and spent nearly four years as a disc jockey at one of the campus radio stations as a undergrad student, I find that if I consciously control my tone of voice, I can make myself sound expressive and responsive; however, if I’m not paying attention, it is monotone.

Art, Autism, and Communication.

Three things started me thinking about this whole topic: 1) Amanda Baggs’ video, “In My Language”; 2) Autistics Speaking Day, and 3) art itself as a communicative force. First of all, I came upon Ms. Baggs’ video this past summer and watching it, I found myself intrigued at seeing how she communicates and interacts with her environment, as well as her statements about language.

Secondly, I remembered last year’s Autistics Speaking Day and how in the face of some silence on Twitter, Facebook, etc. we spoke, and spoke a great deal. That day, we communicated by blog posts, poems, Tweets, Facebook status updates, videos, you name it. Last year, I wrote the poem “Speech” as part of my offering for Autistics Speaking Day, which is a meta-poem as I describe how exactly I speak through poetry.

I have said before that it is much more native to me to communicate with the written word. Since my knowledge in the area of brain functions is still not what I would like it to be, I must admit that I am not entirely sure yet why this is the case. Dr. Temple Grandin has offered an explanation that parts of an autistic/Asperger brain being over-wired (namely the frontal cortex) and others being under-wired (for example, the limbic system); her mention of brain wiring makes me think that this could lead to a possible explanation.

Alternatively, it simply may be because with the written word, I have more time to consider what I wish to say, and the exact words that will convey my thoughts. On top of it, I do an act of translation in my brain, since I am a primarily visual thinker – the translation is from pictures or moving film to words. The process is more evident when I write poems, but it does exist with most of my writing as a whole.

Of course, one must consider how the message begins in the first place. Below the pictures in my mind, there is still more: the emotion. Emotion is the first well, I believe, from which a good deal of creative communication emerges. For me, the emotions turn themselves nearly instantaneously into pictures – and when felt about a particular subject, the pictures become finer and more detailed. For a musician, the emotion would lie beneath and emerge as sound either through instrumentation or the human voice. For the visual artist, it may emerge as images and colors which then find their way out through brushstrokes, 3D illustrations, oil pastels on canvas, and so forth.

Emergence, by Nicole Nicholson

Is this process any different than that of a non-autistic artist? Maybe not. And I must admit, I would love to learn more about the artist communication processes of other autistics/Aspies. However, I think the major point of notice with an autistic artist is that the medium he or she works with more easily gives voice to what maybe in a moment of speech he or she cannot express adequately, or at all. This quote by violinist and filmmaker Laura Nadine underscores exactly what I mean:

“There is no other way for me. I am locked inside my mind like gold in the belly of a fortress. My lips are not witty enough, my spoken words misplaced. It is only through poetic prose inspired by music that I can even begin to seep beneath my mind’s locked doors.”

Also, consider these words from artist Kim Gerry Tucker, recently featured on Awe in Autism’s website:

“Artistic expression is an important, even therapeutic means of communication — to be able to “go to another place” for a while, especially since I struggle with effective communication.”

And that is exactly what we do: we go to another place within ourselves. I know I am in that place when I can shut my eyes and see my poems and moving pictures…all I have to do is take notes and describe what I am seeing. I can rewind, replay the images and catch detail I didn’t the first time around. I can freeze frames until I have finished translating them into words. For an autistic person, being able to withdraw inward a little, go to that place, and tap into what is there can mean a difference between being able to communicate and being silent and shut up. That “place” is a healthy, good place for any one of us to be in…a place where we can find the message and the meaning and let it flow out through our particular talents.

Letting It Go

Examining myself, I have concluded that there are several ingredients that I need in order to be able to create and communicate. I would probably sum it up with this equation:

Desire + Skill/Talent + Time + Peace of Mind = Art

Again, these are probably the same things that anyone would need to create and communicate, but for me as a spectrum artist, I find that they are more crucial.

The first, desire, one might think would be pretty obvious – you’d have to want to create in order to even do so, right? But truthfully, desire is where it all begins. Oftentimes I have witnessed people with the desire to create kid themselves into thinking that they cannot create – and I have even done it to myself. For example, I have somewhat limited drawing and illustrating skills, but I do not allow that to stop me from sketching or drawing, which I do sometimes to illustrate or accompany a poem (for example, “You Don’t See It”). During the moment, you take your desire and work with what you have.

That leads me to: skill/talent. I clubbed both of these together to encompass both those with a natural talent and those who have manually learned their art through instruction (i.e. both the prodigies and the non-prodigies are included here). Words come naturally to me, so that is the primary medium with which I work. I have some drawing and illustration skills, and can play both electronic organ and guitar at beginner’s level. I am willing to build by skills in both of the later, but I turn to words first. One can view skill/talent as the tools in one’s toolbox to allow oneself to communicate and let the message come out.

And if one is a novice/amateur/etc. at the chosen art, then he or she still has the tools to express him/herself. I began as a twelve year old with a ninth-grade reading level and vocabulary and during my high school years, reading every book I could get my hands on to soak in their words and beauty. Kambel Smith began with a Christmas gift of an easel and painting supplies. We all start somewhere and have the potential inside us to grow, become greater, and express ourselves in greater ways.

Now, I must address an important element: time. For me, a poem can take anywhere from five minutes to two hours to write, depending on how long it is and how well I am able to concentrate, see the images in my head, and pull them out. I even have poems that took me three months, or even a year to write because something wasn’t quite right the first time I tried. Other artists need differing amounts of time to create and communicate, but the bottom line is that time needs to be allowed for that creation to happen: time to ponder and then time to turn the intangible into the physical.

The last element, at least for me, is peace of mind. This is not to be confused with peace of emotion or feeling, although some may need all of these to be able to create. For example, I have channeled from some of my darkest emotions and brought forth the resulting melancholic colors into poetry; I have channeled words from my past pain and my present pain. But I find that if I am anxious or worried, the words just will not come. Perhaps it is the opposite for others – that writing gives vent to their worries and anxieties – but anxiety stops the projector in my head or makes it go on endless loop.

Conclusion

I thank Father and Mother God for the talent They have given me. Because of this, I have the means to express who I am and what is within me. I could not image a world in which I could not write; I cannot fathom how much would remain locked up inside of me.

When speech fails us, there are other ways to get our messages out to the world. I believe that within us, there are entire cosmoses that have yet to emerge into the tangible in their full spectrum colors. I would encourage tapping into those universes to see what one desires to express, and find a channel of communication to bring them out. Let us not limit ourselves to our lips and ourselves a disservice by believing the lie that we have nothing of value to say.

In closing, I leave you with an excerpt of my poem, “Speech”:

This is what happens when speech becomes futile. You see,
I have three mouths – one on my face, one below my belt, and the
last one existing in the center of my brain. It grows teeth
as the words come, busting through bloody gums that eventually
send speech down the nerves of my arms and into my fingertips. Magically,
the teeth turn into type, this hushed silence
that you are reading right now…
Listen carefully. Don’t
read my lips. You won’t find anything there today.

A short film for my poem, “Letter to My Father“, will be shown during the exhibit.

Please share/Tweet/post on FB/reblog/etc.

You can also follow @AutisticsSpeak on Twitter.

If you’re not familiar with Autistics Speaking Day, then here is the post by Corina Becker at No Stereotypes Here that started it all.

And I will be participating both on this blog and at Raven’s Wing Poetry.

“High School Jungle” was published in Hyperlexia Journal on Friday, October 14. It was written about my own experiences with being bullied in high school.

Hyperlexia Journal is a literary journal about the autism spectrum that publishes poetry, fiction, and personal essays. The editors of Hyperlexia seek “genuine and truthful writing about autism”.