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.

demi-lovato-and-selena-gomez-on-barney-and-friends-800
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!”.

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10 thoughts on “Asperger’s, Autism, and Social Media: Sanctuary or Setback?

  1. I love the picture about showing things to internet friends vs. real friends. I’ve never joined an Asperger’s group online, but I have found the blogging world of autism to be beneficial in learning about Asperger’s and trying to figure out what is normal and what might be Asperger’s.

  2. Nicely written.

    Personally, as somebody with autism, social media has been a great way for me to polish my social skills in a safe(r) environment where I can take my time to formulate the right response and not feel under pressure. 🙂

  3. You know, usually I read things from you and I think “YES!” but this one made me angry. Why? I’m not part of any online support groups. Never really have been. HOWEVER, I think you make some assertions that are a bit unfair to people who participate in these communities. Yes, I agree that we should make sure we’re not living in a fantasy world. Yes, I think there can be some danger of falling into that trap. But no, I think the trap is not as easily set as you are claiming it to be, and most of us are well aware of this.

    However, we do have interests that fall outside the general realm of “acceptable or age appropriate”, and we spend our *entire* day-to-day lives hiding them from coworkers, or being told by everyone in “real life” that we are horrible people for it, and losing respect for something that is completely trivial. Is it really a problem for a 35 year old to enjoy playing with beanie babies? NO. It’s not. Sure, it’s not what most 35 year old women would do for fun, but lets be honest: is it hurting anyone? NO. Is it hurting the woman? NO. Does it give her satisfaction and make her happy? YES. Then it is not a problem. It can become a problem if that is the only thing the 35 year old does, and they do not do their paid job or anything else so that they can instead play with their beanie babies. But if that’s how they unwind after a long day of hard work and socializing, I am having a difficult time seeing how it is bad for them to share something like that and show their interests. It’s nice, every now and again, to get some positive validation. We don’t get it anywhere else. We don’t get to share our interest anywhere else. So is it really a problem for a 35 year old woman to take pictures of her beanie babies after work and post them to a support site saying “this is how I enjoy to spend my free time”? It’s called “free time” for a reason.

    Please don’t take this as an attack on you personally. Usually I love your posts. This one just touched a nerve, and I wanted to explain why. I hope you can understand that I am simply disagreeing with (some of) the idea you have presented here and not with you on a general level.

    • I am not offended 🙂 As always, my blog is based on my observations so they’re filtered through my experiences. I know my experiences are not the same as everyone else’s. It hurts my heart to see so many grown aspies who don’t work because they have never been able to acquire the skills they need to socialize in the real world. With the lack of mental health professionals willing to treat adults on the Spectrum, those skills can be difficult to acquire. I don’t want you to think I believe online communities have no value. I think there is great value in the online support communities. We finally have a place to talk to others who are like us and understand us. That is priceless.

      Unfortunately, I have seen some aspies that seem stunted because of the 100% acceptance. I have met some very juvenille adult aspies who have nothing to challenge them to mature. I know these support groups are not our parents, but I’m going to compare it to parenting for a moment. When my sons signed up for soccer last year, at the end of the 2nd practice my oldest said he didn’t want to do it anymore. It would have been so easy for me to say “Fine, let’s quit.” Truthfully, I hated driving to the 3x a week practices and sitting outside. Instead I said “We just started. Let’s give it three weeks. That’s less than 10 practices. If you still don’t like it at the end of three weeks, you can quit.” By the end of the third week, he LOVED it and wanted to do soccer this year. Had I not nudged him and embraced his unwillingness to try, he would have missed out. When we have an environment that tells us “You’re perfect 100% of the time no matter what you do” I worry that it doesn’t challenge us to grow. As much as I know I would prefer it sometimes, it really ISN’T ok to spend day after day locked in your room away from the world with the internet as your only outlet. It isn’t healthy. The constant approval and placation that we receive from the groups can be addicting. “In my online group, I can do no wrong so why would I ever want to face the world.” There are some aspies that think that way and that worries me because it’s not healthy. Being stagnant never is. Even if growth is uncomfortable, we should always try to keep growing.

    • I agree.
      This just seemed like a “in the real world people are impatient and unkind, so we should all be impatient and unkind to each other” thing.
      Like… if online friends hadn’t showed me that I have value even if I’m not “mature” or “socially appropriate”, I would be dead.
      And you can never make eye contact and have imaginary friends and constantly rock back and forth and never wear anything that isn’t purple, and still be a wonderful unique person who puts good things into the world.
      And “online world social skills” are also social skills, and they’re as good as “real world social skills”.
      And a “real friend” might tell me that I have lettuce in my teeth (or they might not! I won’t think someone is a bad friend because they don’t tell me I have lettuce in my teeth), but someone who tells me to “look at them” and “have quiet hands” and “talk like a normal person” is not someone I want to be friends with.

  4. Now you’ve got me wondering about the whole possibility that I could have mild(?) Aspergers…ha. I’ve learned so much and am ALWAYS learning about Autism since my 4 yr old was diagnosed a couple years ago. I have seen so many similarities with his oral sensory sensitivity to mine. Little by little I wondered if I must just have a SPD(texture eater/avoider all the way)…but I have other things that I’ve recently questioned, also, and now you’ve got me thinking I need to read up a little more! Thanks 🙂 the first sample quote you gave is exactly me. Not only do I only eat one food at a time & prefer them not to touch each other, but I always make sure the last bite I have is going to be a “good” one. Does that make sense? Maybe it’s just OCD?i will probably never know! anyway….thanks again. Everything about this post makes sense to me. I’m very thankful I have found the autism parent community!!

  5. Hii! I’m on the spectrum (formally diagnosed). I like this post. There are some things you wrote that can be both a “yes” and a “no.” It’s really dependent on the person, but I think you already said that, so I’m being redundant.
    Remember that, as it’s a spectrum disorder, some of these “very juvenile” Aspies may simply be farther along on the spectrum than others. That said, you make some good points about the pros and the cons that these communities can present for an individual.
    Personally, I’ve gotten understanding from Aspie forums (like Wrong Planet), but I’ve gotten a good social training ground in various online social games. The lessons I’ve learned in those have helped my real-life interactions tremendously.

    Not sure what I’m getting at here. Just thought I’d share that, and thank you for the post! 😀

  6. I am learning a lot about Adult Women with Aspergers through research, life experience and conversation.
    There are ALL types of Aspie women.
    Parenting styles play into this result Big Time!!
    Here’s an example: The spoiled, doted on, only-child Aspie daughter. And an emotionally sensitive Aspie Daughter raised by overly critical, narcissitic disordered, self-serving parents.

    TWO…..radically different upbringings.
    EQUALS….
    Two….. Radically different results.
    DAY and NIGHT.

    just a thought.

  7. My impression of this post was that it’s attacking a straw man. Pretty much everyone I’ve known in online groups knows that there’s a difference between sharing their interest with the people who are OK with it and bothering people at work who aren’t. It seems to be shaming Autistics with “non-age-appropriate interests.”

    I’m also a member of a Facebook group for people who collect antique sewing machines. Presumably the author would either assume they are in a fantasy world where you can burble on and on about different sewing machines and not distinguish between group members and other people in their lives. Or maybe they’d presume the sewing machine collectors are not on the spectrum and would know better because it’s OK to have a collection if you’re not autistic.

    • You certainly have a right to feel this way. I have a right to feel the way I do. We all have the things we are hyper-focused on. For some, the interests are “non-age-appropriate”. I personally don’t like it when I am in an Aspie support group talking about the issues we are facing with real people in the real world and another member wants to share how she dressed up her dolly today. My interest/obsession is Star Trek. I am involved in several Star Trek groups. Why? Because I have recognized the importance of sharing my personal interest with others who share my interests. It took a long time to learn that the rest of the world isn’t interested in my ability to correlate everything back to a ST episode or the Star Wars movies, but I have learned it. Just like you joined a sewing machine group. You’ve probably figured out that the rest of the world isn’t interested in antique foot pedals and bobbins. If you work, you have probably learned that your coworkers don’t want to see photo after photo of antique sewing machines or hear the history of the sewing machine or really have much of anything to do with sewing machines. Even though I think they are pretty cool. That’s why there are special interest groups. To connect people who share their love of a certain subject.

      Sometimes we think we are supporting people when we are actually enabling them. I have seen Aspies create alternate universes “The Niggis!” where they claim every person on Earth has a doppelganger in the Niggi world!! (I know..the name is so similar to an offensive word. I did NOT come up with this.) They share their fantasty “Niggi” life with everyone. They have a crush on Niggi Channing Tatum! Niggi Brad Pitt and I are best friends! These are adults. Not children. When people encourage that, I feel they are encouraging these people to live in the fantasy world they have created. That is a real problem for aspies. We tend to WANT to stay in the fantasy inside our head because we can control everything there. It is safe there. But… it’s not REAL. Too much time there can be damaging. We need to be in the outside world. We need to spend the majority of our time “in real life”. We need to learn that there is a time and a place for our obsessions – fictional or not.

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