Asperger’s, Autism, and Social Media: Sanctuary or Setback?

Facebook, Twitter, LinkedIn, online forums and other forms of social media allow people all over the world to connect. In the online Asperger’s support groups I belong to, members with a confirmed Autism/Asperger’s diagnosis and those who self-diagnose/suspect they may have Asperger’s are equally accepted. No “proof” is required for an Aspie group to embrace you. Because there are so few mental health professionals that care for adults on the spectrum, many adults search the internet looking for answers.  Social media has been a lifeline to many people with Asperger’s, but it can also stifle their personal growth.

 I’ll start with the positive. Here is how social media helps a person with Asperger’s:

It helps answer their questions about Asperger’s.  Many people with Asperger’s have felt alienated for most of their lives.  After realizing their quirks may be caused by Asperger’s, they go on a hunt for answers.  It’s not uncommon to see these types of questions in an online aspie support group:

  • “When I eat, I eat each one of the foods on my plate completely before moving on to the next food. Is that just me or is it an Aspie thing?” 
  • “People always think I look upset but that’s just my natural facial expression when my face is at rest.  Is that an Aspie thing?”
  • “Does the sound of motorcycles make anyone else want to cover their ears? I have always HATED the sound of motorcycle engines.  Is that because of Asperger’s?

People ask all kinds of questions trying to determine which behaviors are governed by their own personality and which behaviors occur because of their Asperger’s. There are books and other types of media to help answer questions, but connecting with other people who have Asperger’s not only answers questions, it helps them feel less alone (especially when another members says “I do that too!”)

 Online communities allow Aspies to make friends – real friends – for maybe the first time in their lives without the stress of being socially correct.  Being online removes the stress of eye contact, correct posture, correct tone and appearance.  You can sit in your favorite ratty pajamas and make a friend without ever having to brush your hair or put on shoes.  Because the groups are Aspie support groups, there is already a commonality in the group: Asperger’s. No painful conversations trying to find some mutual connection. No internal dialogue about remembering eye contact or not standing with your arms crossed. There is safety behind the screen.

It allows us to have a dialogue with someone who thinks the same way we do.  When I talk with my friends who have Asperger’s, we have a different type of conversation. I can’t explain it exactly except to say we speak the same language. We’re straight-forward. We don’t get offended. Our conversations are logic-based, yet we laugh. We share. We know we don’t have to pussy-foot around conversation to make our point. There is a connection there that is amazing. It’s so nice to NOT have to explain your point of view because the person just gets it.

Unfortunately, the use of social media can also inhibit the social skills an Aspie needs to function in the real world because:

Support groups are designed to be supportive without being constructive.  Almost all of the support groups on social media are managed by other Aspies and not mental health professionals.  There is often no accountability for behavior.  You are simply allowed to be who you want to be as long as you aren’t intentionally attacking another person.  There is always someone to like your post.  It doesn’t matter what you do. If you’re a grown adult who likes to take pictures of her beanie baby dolls in different poses, someone tells you that you’re awesome! If you’re a grown adult who believes there is an alternate universe made up of fake Figgi humanoid characters and that for every human there is a Figgi, and you spend your entire day talking about the magical Figgis who live in Figgiworld, people tell you that you are awesome!!  They even encourage you! “How are the Figgis doing today?”  You can be as immature as you want to be and you are AWESOME!  It’s like one of those Barney episodes where the kids exude approval by constantly nodding “Yes” and smiling no matter what happens. It’s surreal.

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These groups are fantasy worlds. In the real world, if a 35 yr old woman walked up to her coworkers to share pics of her beanie baby dolls in different poses, she would not hear that she is “Awesome!”  She would be told that childish things are for children. If a coworker started talking about humanoid creatures in an alternate reality that “really, really are real! and I love Figgi Bon Jovi!!” they would be ostracized and laughed at.  Because these behaviors are accepted and encouraged in social media groups, Aspies may not learn what is socially appropriate. 

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Because they are not discouraged from hyper-focusing on their obsessions, they may not learn how to manage their obsessive thoughts. They may become even more confused when they do try to interact with people in the real world by behaving the same way they do in their online Aspie groups. In the Aspie groups, the behavior is rewarded positively with praise and compliments. In the real world they are chastised and excluded. They may not understand why they are not successful with interactions in real life and may choose to remain in an online support group world instead of interacting with the real world because the online group accepts them without asking them to adapt to the social norms of society.

When Aspies hide in the sanctuary of an online community that never asks them to push their boundaries, they may stop growing.  We learn by challenging ourselves. If an Aspie finds a safe sanctuary that allows them to play with toys, be as immature as they want to be, and never leave the safety of their bedroom and their pajamas, they may stop trying to interact with the world. This can be crippling.

Making online friends is wonderful. I have met some of my dearest friends through online groups, but in order for a person with Asperger’s to be successful in the real world, they have to learn how to socialize in person.  They have to learn that while it is normal for an Aspie to have some sort of obsession (dolls, trains, sci-fi), it is not considered “normal’ in the real world. Coworkers and friends will not want to hear yet another rousing tale of the difference between two types of trains even if you find it exhilarating.  Eye contact, although uncomfortable, is required.  When you constantly avoid eye contact, people believe you aren’t trustworthy.  There are other social cues – body language, tone, etc than can only be learned by interacting in the real world. It can’t be done by hiding behind a monitor.

With all things, moderation is key.  I believe it IS important to have a place to go where you have friends and are accepted, but I also think that we shouldn’t use that place to hide from the world.  To me, a true friend is a person who is completely honest. A true friend tells me I have lettuce in my teeth. A true friend lovingly tells me when I’m being too loud. A true friend reminds me that although my latest Leonard Nimoy/Star Trek bag is indeed “Fascinating”, I may not want to spend the next hour discussing Spock because our other friend wants to talk about her new baby.  A true friend helps me be a better me because she is truthful with me in a constructive way, and I would rather have that type of honesty than someone who just applauds my every action and tells me I’m “awesome!”.

Thank you Leonard Nimoy.

I was not diagnosed with Asperger’s until last year, but I knew I was different long before then.  As a child, I knew I was not like the other children. By the time I was in 4th grade, the school told my parents that I had completed all the reading comprehension textbooks that were available, and I was reading beyond high school level.  They didn’t know what to do with me.  To keep me busy during reading time, I was assigned to the kindergarten class to be a teacher’s aide.  While I was proud that I could read so well, I didn’t like being different.

I had difficulty relating to peers.  My black and white thinking made it difficult for me to understand the world of grey other children lived in.  Other kids seemed to be able to throw caution into the wind and just play.  Spontaneity was a foreign concept for me.  I wanted structure and predictability.  My ideal playground was a thick book filled with delicious facts about my latest obsession.  Teachers didn’t help.  They made the other children aware that I missed reading because I was different.  Almost every day I knew I would hear “Does anyone besides Pensive know the answer to question 4?” even when my hand wasn’t raised. The intellectual gap between me and my classmates was a chasm that was often too wide for me to cross. Their thoughts seemed childish to me.  I had difficulty understanding social situations and making friends.  Although I was the first person others went to for help with academics, I was the last person anyone picked to play with – if I was picked at all.  This is a trend that has continued into my adult life as well.  I wanted to play, but I didn’t know how.  I wondered if there was anyone else out there like me.

I only had to look as far as my television.  There he was.  Brilliant. Intelligent. Brave. Logical. Spock.

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Star Trek.  Boldly going where no man had gone before.  In my mind, William Shatner’s dramatic acting style paralleled the way my peers over-dramatized their issues.  Every. Thing. Was. Just. So. Darn. IMPORTANT!  Captain Kirk’s actions were often guided by intuition and emotions.  Like Spock, I often thought his choices were reckless and not well planned.  He would get the crew into a dangerous situation and then rely on Spock to help get them out.

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Spock, on the other hand, was exactly like me.  He reveled in logic and information.  Reading and studying a new subject was “fascinating”.  He longed for friendship, but he didn’t know how to be a good friend.  He never seemed to grasp the hidden social rules that dictate human behavior.  With a beanie cap on, he could almost pass for human except that he couldn’t. His behavior and his manner of speaking would give him away every time.  No matter how much he tried, people always knew he was different and they treated him differently because of it.  Even though he was intelligent and had studied human behavior, he struggled with interpersonal relationships. He often did not understand sarcasm and inside jokes. I would even say he is a bit naive when it comes to human behavior.  It annoyed me that Captain Kirk often appeared smug when he understood some human nuance that Spock did not.  It felt like he was saying “because I am more human than you, I am better.”  Sometimes I just wanted to wipe that smug smile off of his face.  Spock was the only person I had “met” that was like me.  I was certain Vulcans were real.  I was certain I was Vulcan.

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**picture description **  Picture of Leonard Nimoy as Spock wearing a beanie cap from Star Trek episode “The City on the Edge of Forever”

I was also certain that my parents could not be my parents. My mother had an 8th grade education and I surpassed her intellectually before I completed 4th grade. My mother read and wrote at a less than 6th grade level.  She relied on me to write letters for her and read road maps for her.  A part of me viewed her as inferior because I was smarter.  It was another example of how I felt a lack of intimacy and connection to other humans. I asked to see my birth certificate many times.  I often thought I was adopted. I was sure I was somehow related to Spock.  My parents assured me Vulcans were NOT real, and I was not Vulcan. With confidence, 10 yr old me announced that if I wasn’t related to him, then I would MARRY Spock when I grew up.  I don’t think my parents had the heart to tell me that Spock was old enough to be my father’s father and the Star Trek I was watching had been filmed more nearly two decades before I watched it.

As I grew up, I realized that Spock (and Vulcans) weren’t real.  Still, I loved Spock.  Although Vulcans were not real, SOMEONE (Gene Roddenberry) created him. Maybe, just maybe, he created him after someone he knew. Someone like me. That meant that somewhere out in the big, wide world there could be another person like me.  A real-life 100% human Spock.  That gave me hope.  The idea that there was at least ONE person in the world like me kept me going when I felt isolated and alone.  I wanted to know more about the man who played Spock.  In true Aspie form, I researched and read everything I could get my hands on.

Image*IMAGE DESCRIPTION: Leonard Nimoy wearing a tshirt with a picture of Spock on it. Above Spock’s head, a speech bubble says “Leonard Who?” ***

With all my research I discovered I didn’t just love Spock. I love Leonard Nimoy as well.  In real life, Leonard Nimoy is very different from the Spock character he portrayed. Spock focuses on Science and Nimoy is all about the Arts and Philanthropy. He is not only an actor and director, he is also a poet, an artist, a photographer, a women’s rights activist, and a very free-spirit.  He is the opposite of Spock in almost every way.  In his autobiographies, he discusses how he often had to fight to keep Spock true to his character. Writers and others involved with Star Trek would want to change Spock and make him more “human”, but Nimoy would not allow it. I can imagine it would have been easier for Nimoy to let others turn Spock into someone more like the man he was in real life, but Nimoy was a fierce advocate for Spock. I love him for not letting others change Spock.  I love him for recognizing that Spock is perfect – just the way he is.

Every time I get a twitter message across my phone from Leonard Nimoy, I smile and thank the heavens that he is with us for another day. I really love that man.  He invites the entire twitterverse to be his family – his honorary sisters, brothers, children, and grandchildren.  He is the epitome of acceptance.  For me, there is a symbiotic relationship between Spock and Nimoy with Spock representing my Asperger’s and Nimoy representing a person who has complete, unconditional acceptance for those who are different.

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Just as the writers tried to make Spock more human, the world tells individuals with Asperger’s that they need to change and be more “human”.  Before my diagnosis last year, I didn’t understand why I was different.  I felt I was unlikable and unlovable if I tried to be my true self.  I spent my life constantly evaluating and re-evaluating my behavior and personality to learn what I could do to make myself more acceptable to others. It felt so unnatural to keep changing my behaviors, but I longed for acceptance.  I could not understand why others didn’t see the world the way I did.  I could not understand why I didn’t see the world the way did.

I know now that my brain does not process information the way most of the world does. While the world processes everything in color, my brain processes information in black and white. I don’t know that I will ever be able to fully understand the complexities of interpersonal communications.  Like my favorite Vulcan, I can study it, but I don’t have the same inborn ability to absorb it by osmosis as the rest of the world does. So at best, I can study it and provide a fairly decent imitation of it. It helps me get by in the world but sometimes I feel that I will always miss that connection that the rest of you have naturally.

Since my diagnosis, I have met many other aspies online and most of us share a common love for the logical Vulcan.  We relate to him. We see ourselves in him.  We see how the rest of the world loves and accepts him and we hope someday they will love us and accept us as well.

So, thank you Leonard Nimoy for being the free-spirited, kind-hearted person you are.
Thank you for all the times you preached against bullying or mistreating those who are different.
Thank you for portrayal of Spock and for fighting so hard for someone who is so very different.
Thank you for keeping Spock true to Vulcan form.
Thank you for the hope Spock gave me and the feeling that I am not alone.
Thank you. Thank you. Thank you.
May you continue to Live Long and Prosper ❤

With love, from one of your honorary grandchildren,
Pensive