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!”.

What’s IN that? Don’t worry. You’ll love it. *sigh*

Autistics and new foods. We sniff. We scan. We ask “What’s IN that?” We may even poke it with a fork or touch it first. I’m more than certain our inability to hide our emotions makes for some great faces during all of this sniffing, prodding, and inspecting.

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I want to start this blog by sharing something that my wonderful friend (and fellow Aspie) Aletheia Knights shared with me.  After sharing this comical (but TRUE) link about “picky eaters” on her Facebook, she described the Autistic struggle with food better than I ever could.

Please check out the link and then read on.  For those who don’t know me personally, #16 is a spot-on impersonation of me.

http://www.buzzfeed.com/robinedds/terrible-moments-in-the-life-of-a-picky-eater

 

 

Did you really read the link above?. ^^

 

 

 

You did?   Ok, read on.
My friend Aletheia says:  “This is all so true. Like many people on the autism spectrum or with other sensory issues, I am a resistant eater – a term some medical professionals use to distinguish our issues from ‘picky’ eating. Most picky eaters can learn to broaden their tastes, and may feel comfortable trying a new food after having been exposed to it a few times. For resistant eaters, this is almost impossible. Trying anything outside our culinary comfort zone, whatever that may be, is almost unthinkable – it’s as if it doesn’t even quite register in the mind as falling into the category ‘food’ – and can be a tremendous source of anxiety. For many people, trying something new is a fun adventure; for me, it’s an actual accomplishment. If you tell me to eat what’s served or go to bed hungry, I won’t even have to think about it – I’m just tremendously relieved I have an option other than ‘eat it.'”

Amen buddy.

In the past, I have tried to describe the tremendous anxiety I feel at the thought of trying new food, but Aletheia nailed it.  It is an anxiety I have carried with me my whole life. Even as a child, if a friend invited me to stay the night, I had to know what was for dinner first.  Casserole – with all the foods mixed together? Without even asking my mom, I would say “Sorry. My mom says no.”   Fried chicken and mashed potatoes? “Let me ask my mom!” 🙂

As I have gotten older, I realize that fear is irrational yet it is still there. Always there. The same way others fear teeny little mice (irrational too!), I fear new foods. The only difference is that it is acceptable to go running out of the room at the thought of a six ounce mouse. It is not acceptable to run out of the room at the thought of a six ounce dish of calamari. Calawhat?  No thank you. Give me the mouse any day.

If it were just the food, I think I might be able to tackle it, but it’s the social pressure that comes with it. People EXPECT you to try new foods. They EXPECT you to want to eat your food mixed together and *gasp* touching.  There is almost zero sympathy for those with food anxiety – regardless of your age. Children are mocked and belittled and told their feelings don’t matter “Just TRY it. Here…. open your mouth! What are you? A baby?”  The mocking doesn’t stop when childhood ends. The social pressure ADULTS place on each other to try new foods (especially gourmet food) is as bad as the social pressure teenagers put on each other for sex or drugs or drinking. “Come on? Seriously?  You won’t try it? One little bite isn’t gonna hurt you. You’d like it if you just tried it. Come on.  You know you want it.”    No. Actually, I know I do NOT want it. Thank you very much. My  personal favorite is when they know you have an aversion to a certain food (mushrooms… *shudder*) and they tell you “But you can’t TASTE the mushrooms.”  Yes. I guarantee you I can.  When you find a certain flavor repulsive, it is even more distinguishable.

Whether someone is on the spectrum or not, please be considerate of their tastes.  If they don’t want to try a new food, let it be. More for you, right?  It doesn’t matter if they’re 8 or 98.  It isn’t right to belittle or pressure someone into doing ANYTHING they don’t want to do.  Just because it’s easy for you doesn’t mean it’s easy for me.  Are you ready to carry a jumping spider in your palm? A long-tailed rat on your shoulder?   A glorious smooth green snake around your neck?  What about snuggling with a bat? Come on. Just try it. You know you want it.

I mean.. I would.   🙂  Who wouldn’t love a face like this:

 

 

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A note to my readers (if you survived that gorgeous jumping spider).  I just want to tell you that I continue to be amazed by you.  All of you. I love when you connect with me on twitter and facebook. The letters you write me are so treasured. Your tweets and posts on facebook make me smile. I love when I see one that makes me say “I knew I wasn’t the only person that thought that!”  I am just so blessed to have this opportunity to ‘meet’ all of you and so, so grateful for social media that has allowed us to connect.  ❤   There is a whole *universe* of people like me out there. People just like you.  My heart is just so full ❤

 

It’s YOUR fault that I behaved badly.

There is a power that some people possess that has always confused me.  Certain people have an uncanny ability to avoid accountability for their actions by twisting and stretching the situation so that you are the reason the problem exists. These people are emotionally volatile and by the time they’ve finished, they can almost convince you that it’s not their behavior that is the concern. It is your REACTION to their behavior that is the problem.

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These people have a magical way with words that always manages to clear them of any responsibility or wrong-doing.  Their ability to  flip a situation around and make you feel guilty is mind-boggling. Usually it happens so fast that you don’t even realize it until all the drama is over.  I’ll give an example:

You have a friend you go to lunch with.  Maybe she realizes she’s being rude. Maybe she doesn’t, but when she wants the waitress  she waves her hand in the air, wolf whistles and shouts “Hey! Over here!”  It embarrasses you. When the waitress does come, she is really demanding and rude. “I know they give you onions on the side, but I want you to dice them for me.”  “I want lemon for my tea but don’t put it on the glass. Bring an extra dish for it to sit on.”  “This butter for my rolls is too hard. Go find some soft butter.” On top of all that, she leaves a lousy tip. $1. No matter what her meal costs, she always leaves a dollar. It’s gotten to the point where you don’t even want to go out to lunch with her anymore because it is so embarrassing. If you just avoid her, you know it will turn into a big deal. You decide to talk to her about it.

You tiptoe. You approach slowly. “There is something I’ve been wanting to talk to you about. When we go out to eat, you are not polite to the wait staff.  You ask them to go above and beyond for you. You whistle and wave at them. You only leave $1 tip.”  Probably you drag this conversation out a little longer but for the sake of the blog, that’s the gist of it.

Your friend immediately reacts.”WHAT? So you’re sitting here trying to tell me that I’m rude? So you’re taking the side of a waitress – someone you don’t even KNOW?  You’re saying that when I go out to eat I shouldn’t ask for my food to be cooked the way I like it because it’s TOO DEMANDING?”

You try to explain, but your friend isn’t listening. She’s intent on making this YOUR fault. Not hers “So I’m at a restaurant paying $2 for a glass of tea and when it’s empty I’m NOT supposed to signal the waitress?!? I’m supposed to just wait until she has the TIME to fill my drink while my food gets cold? That’s what you expect? That I shouldn’t order my food the way I want and shouldn’t expect my drink to be refilled?!? Why the hell even go? Fine. You win!! You want to be that way? Don’t ever worry about going to a restaurant with me EVER again!”

 


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You’re shell shocked. What just happened here?  You check yourself. You ask others if they would deem her behavior rude. Yes, they would. Yet she’s turned it around and made it so you are the jerk with unreasonable demands.

For all Aspies, these types of arguments are hurtful.  For some Aspies who experienced bullying or abuse, these types of arguments are even more damaging. Because so many of us were bullied or endured abuse from our families, screaming and yelling causes us to shut down. It mentally reverts us back to that small, scared child who cannot defend him/herself: that child that just wants to shrink into the pavement and disappear. We are so distraught by the anger and the yelling that we cannot even defend our position. We just want to melt into the wall.

What’s even worse is that for many non-autistic people, fighting like this is acceptable. They scream. They yell. The next day they are fine. We aren’t. We’re still trying to find a logical, sensible solution to the problem. We’re still trying to figure out what part of our approach was so repulsive that the person reacted the way they did. We’re swimming in a sea of lost. More than likely we are blaming ourselves because we’ve always failed at “reading people” that it never occurs to us that the other person is IN THE WRONG.

They say things like “I got mad. I’m  over it. YOU need to get over it too”  AS IF it were that easy for us.  We need to analyze. We want to know why. What caused it? We want to break it down into micro-particles so we NEVER make that mistake again. All the while, never realizing that it wasn’t our fault. 

We have been taught that we are the oddballs – the ones who are different, so when people react differently than we think they should, we automatically assume it was our error. It’s NOT. 

I wish I could tell you how to deal with individuals like this. I’m still trying to figure it out myself. It’s hard when they are your ‘friends’ but it is even harder when they are your family.  Maybe some day I’ll know how to approach them better. Maybe some day I’ll be able to stand my ground. But for now…I’ve taken the first step by realizing that at least this time… this time… *I* am not wrong.

Have you had an experience like this?  How did you react?

I’m jealous of your Asperger’s

I’ve met a lot of different people with Autism and Asperger’s and sometimes I get a little jealous. Maybe I shouldn’t admit it out loud, but I don’t know where else to say this.  I guess I’m jealous.

I go online and talk with other adult Aspies,  Many of them don’t work.  They live at home with their parents. They spend their days focusing on their special interests. They are online as often as they want to be.  They don’t have to get up early. They sleep in. They set their activities to their own circadian rhythm. The collect their shiny things. They flap their hands/stim when they need to. They are basically free. Free to be themselves.

I realize not all Aspies have supportive families, but many of them do.  Their parents are accepting and supportive of their disability. They have been sheltered. Their home is a safe place. The only downside is having to follow the rules their parents establish, but hey.. it is their parents’ house. Sometimes I get a little bit jealous of all that.  I never had that.

Although my mother was never officially diagnosed, I am quite certain she was bipolar (manic/depressive) at the very least. My mother had two moods: Angry and Sad. Occasionally, on the very, very rare occasion she was happy. But she was never just comfortable. She was never content. My childhood was very turbulent and maybe some day I’ll find the strength to write all about it. For now, just for now, I’ll give you a few small details.

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**Photo Description: Me and my Mother **

My mother was a very emotionally unstable person. She had only an eighth grade education, and not a very good one at that.  Her lack of education made her very defensive. She believed there were only two sides to everything. Her side and the wrong side.  If you disagreed with her, you were on the wrong side.  The wrong side brought her wrath – physical and emotional abuse.  I spent my childhood tip-toeing on eggshells.  Although the adage is a joke, in my house, it rang true: “If momma ain’t happy, Ain’t nobody happy.”

My mother had no friends, so I was expected to be her best friend and agree with her no matter what. To side with her always. To be her champion. To defend her even if she was wrong.  For any child this would be difficult. For a child with Asperger’s it was even more difficult.  I was torn between my desire to avoid my mother’s wrath and my strong Aspie compass telling me to always defend what is right no matter who was wrong. Stimming behavior – flapping hands, etc was not allowed. I pulled at the skin of my lip. I still do today. It was the only thing she couldn’t stop me from doing.

I was never allowed to recede to my room and disappear. I wasn’t allowed to meltdown ever. A meltdown would have brought on more physical and mental abuse. “Why are you crying? Do you want me to GIVE you something to cry about?!?!”  I learned quickly to keep my feelings inside. My mother’s love was always conditional. She only loved you when you were doing something nice for her. This behavior taught me to be codependent from an early age and believe my self-worth was based upon my actions. I felt unlovable unless I was doing something to deserve love. The sense of worthlessness she instilled in me took many, many years to overcome. Like many abusers, each violent outburst was followed by gifts.Toys.Things. Because THINGS equaled love. Deeds equaled love. Yes, she had hit me, but she had BOUGHT me these toys to SHOW how much she loved me. And you could not reject those gifts or you were rejecting her. They were meant to be displayed and exalted. It was an emotional roller coaster.  It was exhausting to be her daughter.
Image**Picture descrition: Me with my shelf full of toys. Mon chi-chi’s, Benji dog, Mickey mouse, etc. All to show how much I was “loved.”

I felt trapped growing up. I felt like I was never allowed to be myself.  Because my mother’s moods were so volatile, there was never a way to predict how she would react. For a child with Asperger’s, this is the equivalent to living in hell. We need routine. We are black and white thinkers. We need cause and effect. These things help us feel like things are under control. In my house, the same action did not always bring the same reaction. Having a mother who throws dishes at your head if you forgot to clean out your cereal bowl yet doesn’t bat an eye if you intentionally misbehave makes life extremely unpredictable. I never knew what to expect. Never knew how she would react. Never wanted to go home. Anxious isn’t a big enough word to describe the anxiety I grew up with. I felt caged. Trapped. Pacing back and forth in my too-small container unable to break free.

I had my first job when I was 15 and had my first apartment at 17. I am sure I did terrible at my first job. I know I was terrible at managing my first apartment. I left home to escape her. To escape her cruelty. To escape her emotional demands. To escape that house.  Without meaning to, without realizing it, my mother forced me to learn the skills I have used to survive in the non-autistic world. I had to get a job to get money to leave home.  I had to get out.

So when I moved out, there simply wasn’t an option to return home. I had to learn how to get a job and KEEP it. I had to learn to survive on my own. I am not saying my parents never helped me. My parents loaned me money. My father helped me on many occasions. I would be lying if I said I did it all on my own completely. But I never wanted to go back. Home was not a safe comfortable place for me. There was no one to wrap their arms around me and tell me it was ok that the world was so rough and that I could try again tomorrow. That was a fantasy. A Disney movie. That wasn’t my life.

So I’m a little jealous when I see these grown adults with Asperger’s that still live at home. They have supportive parents who hug them and love them and tell them “everything is going to be OK.” Their parents tell them they are perfect just the way they are. They don’t have to change for the world. Their parents don’t force them to ever take a step outside of their comfort zone. Their home is their sanctuary. They don’t have to pretend to be something they’re not to survive.  I see that as a sort of freedom I never had.

The freedom to feel safe with my own family.
To feel loved unconditionally.
And I’m a little jealous.

But it’s a little catch-22 for me.  While I have some jealously towards those who live the life I never had, for the first time in my life, I feel some gratitude towards my mother who didn’t baby me, didn’t coddle me, and didn’t allow me the option to fail. Because her actions pushed me out of the nest so forcefully, I had to learn to fly. And I did.  I wonder if I would have learned the skills that I have now if failure had been an option. If I had been allowed to retreat to my room and hide under the covers, would I have ever pushed myself?  If I knew in my heart that I could always go home and home was a safe, fuzzy place, would I have succeeded? If my parents had sheltered me from every failure because I was different, would I have tried as hard as I did? Would I be the person I am today? College educated? Married? With children? With two jobs?  Or would I still be living at home, single, free to flap my hands and fidget with my shiny things and have my meltdowns. Free to be exactly who I am all of the time.  I’m not sure. I’m just not sure.  And then I wonder…which one of those things really is free?

Light it up what?? I’m puzzled.

Right now, across the country, across the world, people with Autism/Asperger’s are arguing amongst each other.  And it has to STOP.

There is a large divide in the autistic community.  Many people who have autism/Aspergerer’s feel that Autism Speaks (A$) does not speak for us.  I empathize and understand completely. Autism Speaks strongly promotes the idea of a “cure” over the idea of acceptance. They have no one with Autism on their board of directors. They produce advertisements, small films, etc. about what a burden autistic people are to society. I could go on and on about why there is no love for A$ among the autistic community, but I won’t. A simple Google search will display multiple blogs and many articles that have already been written on this subject, so I am not going to go into it here.  What I am going to talk about is the divide among autistics because of Autism Speaks and why this divide works in their favor.

World Autism Awareness Day is April 2nd. Since 2010, Autism Speaks has been telling the world to “Light it up Blue!” for Autism. Major landmarks in the US and all over the world light up blue starting on the eve of April 1st throughout April 2nd to show their support/autism awareness. It has become quite popular.   The campaign has been successful.  All over the world when people hear “Light it up blue” they think of autism.

Image*image description: Various worldwide landmarks lit up in blue.

Online on different social media sites I see groups of autistics arguing over the Light it Up Blue campaign. In protest of Autism Speaks, some groups proclaim we should “Light it up GOLD!”  Another proclaimed “Light it up in Rainbow Colors!” Other groups are holding polls to determine exactly which color we should “Light it Up” (as if anyone is asking us.)

This same debate continues over the iconic puzzle piece that is used to represent Autism. (Even though Autism Speaks was not the FIRST organization to use the puzzle piece to represent Autism, they are the most recognizable.)  Again, across the interweb in different groups autistics are arguing with each other over this symbol. They argue our symbol should be a ribbon or some other icon. Then the debate continues on what color the ribbon should be. Not blue. Heaven forbid.

While they’re arguing over what color to light it up and whether or not the puzzle piece should represent us, I’m just puzzled.

Don’t they see what they’re doing?

By arguing amongst each other we are failing. And we are failing miserably. Here is why:

Alltistics/NTs/Neurotypical people all over the WORLD are already familiar with the puzzle piece and they LOVE it. They don’t care what we think of the puzzle piece.  I’m a nurse. I have a puzzle piece badge holder. It was a gift from a friend/coworker who wanted to show her support for my Asperger’s.  She has no personal connection with autism, but when she saw a badge holder with 4 puzzle pieces inside a heart, she immediately thought “Autism” and bought it for me.

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I am so grateful she did. I can’t count the number of positive conversations I have had with patients and family members about autism because they recognized the icon.

Just for a moment, let’s pretend “Autism” is a brand name. When people who don’t have a personal connection to autism think of autism, what is the first thing they think of? The puzzle piece.  The entire World thinks “autism” when they see the puzzle piece.  Whether we like it or not, we have a logo that is already recognized all around the world!

We’re wasting valuable time and resources trying to change an already beloved icon. I asked people (non-autistic AND autistic) what the puzzle piece meant to them.  Even among actual autistics, only a sparse few knew that the original logo featured a crying child and signified that people with autism don’t “fit”. Instead people thought it meant we are like a puzzle that is in need of being solved. Others said we are a small piece in a bigger picture. Others said it meant we were unique. As a person with Asperger’s I have always found that the puzzle piece was a very illogical choice if the original goal was to show that we don’t “fit” because a puzzle piece’s only job IS to fit. And you know what happens when you try to force a puzzle piece to fit where it doesn’t belong? It damages the piece(s) involved.

While autistics argued yay or nay to the puzzle piece, one thing was consistent: all of the non-autistics I spoke with LIKED the puzzle piece. The only divide I saw was among us – autistic people. There were so many reasons why some autistics liked/disliked the puzzle piece.  It doesn’t change the fact that the entire WORLD thinks “autism” when they see the puzzle piece. The energy we spend arguing over whether or not we need to fight to change the symbol is wasted energy.  Instead of trying to change an already world-famous symbol, we might try changing our perspective about what it means instead.  Like so many others, I had no idea that the original concept meant we didn’t fit. THIS is what I thought the puzzle piece meant. I still do.

 

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The same goes for “lighting it up blue (LIUB)”.  When I have talked with non-autistic people about the light it up blue campaign they say it means “Autism”.  They don’t say “Autism Speaks”.  The truth is, unless they have a personal connection with autism, the LIUB campaign is just a flash in the pan on their facebook wall. They comment “Yeah, I saw that big ferris wheel was all lit up for autism”.  They really have no clue. Everything is just Autism to them. Not Autism Speaks. Just Autism.

Divided, we fall.  When I see the facebook groups/social media sites with autistic people viciously arguing over the puzzle piece and the color blue, I cringe. I am ashamed.  What do we look like to the outside world? A bunch of people who can’t even agree on a color? A bunch of people arguing over a puzzle piece logo. To the outside world, it looks frivolous.  There are already so many stigmas about autism. Autism Speaks encourages people to think we are child-like, immature, and not able to make our own decisions. We are reinforcing this belief when non-autistic people go online and see we can’t even agree on a color. We’re fighting against each other over a color and we wonder why we can’t get people to take us seriously.

We need to refocus our energy!  I can’t say it enough. We’re arguing over a color. A color. While we are doing this, we remain divided. You know who ISN’T divided? Autism Speaks. They keep moving forward and campaigning for more money while we sit around fighting over the color blue.  It needs to stop.

Instead of fighting an uphill battle to change the beloved puzzle piece or light it up green, purple, or cotton candy colored, we need to use that energy to change what really needs to be changed: Autism Speaks.  In today’s social-media inspired world, companies are bending to public pressure.  We need to spend our energy educating friends/families/non-autistics how Autism Speaks is hurting us.  We need to put pressure on A$ to CHANGE their policies. CHANGE their practices.  We need to encourage them to truly become what they say they are – a voice for people with autism.

Because in the end – changing the puzzle piece and changing the color mean absolutely nothing if we don’t change the biggest source of false information on autism.

 

I am not fine Taco Bell.

I love you Taco Bell, but your drive thru is making me uncomfortable.

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When I pull into any other drive-thru, a voice comes through the box and thanks me for choosing their restaurant. The cheerful thank you is followed by “I’ll take your order whenever you’re ready.”

Not at Taco Bell.

I pull up to the speaker box in the drive thru. A voice comes through  “How are you?”

What?

How am I?  What? I don’t know. I’m hungry. I mean.. I don’t know.  Do I answer? Do I just order? I don’t really want a CONVERSATION. I just want a Taco. Maybe a bean burrito. Definitely a churro. Churro. Mmmm… Wait. How am I?

It throws me off. Every. Time.

I have Asperger’s, so I struggle with social niceties anyway. I’ve learned it is polite when someone asks how you are to say “Fine, thank you.”  It is a pointless exchange. A waste of breath because the people asking usually do not care how you really are, yet we say it all day. How are you? Fine.  Ugh.

Why Taco Bell?  Why?  Does your cashier REALLY care how I am today?

Why can’t your employees just say “Thank you for choosing Taco Bell!  I’ll take your order whenever you are ready.”  That’s a polite and honest exchange.  The truth is, you want my order and my moolah.  I want your tacos. It’s fair really. So why the facade?

The next time I pull up to Taco Bell and that voice warbles through the speaker and asks “How are you?”  I may just answer honestly. I’m exhausted. I just finished a twelve hour shift. I am eating this meal in my car on my way home from work so my kids don’t get jealous that mom got Taco Bell while they had to eat a home-cooked meal. (Oh the horror). I’ve been taking care of everybody else all day long at work. I’m pooped out. I’ve been smiling and talking and being polite all day long and I’m done. I’m just DONE. I just want to scarf down my tacos and pray that I get more in my mouth than I do on my shirt.  The last thing I want is another fake conversation.

I love you Taco Bell, but please… just take my money.

For those who think most people really “mean it” when they say “How Are You?”  I give you this 🙂

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When Logic Fails: Asperger’s and Grief (part two of two)

How does a person with Asperger’s process death? Do we experience grief the same way that neuro-typical people do?  These were my questions as I struggled to understand my personal grief when my niece died last October.  In my last blog, Goodbye Small Fry, I talked about the death of my niece Vanessa.  I shared the story of her loss so you could see what a profound loss it was.  I wanted you to understand that it wasn’t a small loss to me. It was a deep, searing loss.  My life is filled with memories of my nieces and my daughters together.  I lost a piece of myself when she died.

After her death, I felt like my grief was somehow different than the rest of my family. Like a typical Aspie, I tried to research it.  I googled Asperger’s and grief. I found almost nothing pertaining to ADULT grief.  There were a few scattered articles on explaining death to your aspie child.  I reached out to my Aspie community.  Those who had experienced a loss were very supportive, but many of those who did not have a similar experience could not relate.  They wanted to, but without any personal experience, it was difficult for them. I did not get upset. I understand all too well how it feels to not be able to ‘be there’ because you cannot understand – no matter how bad you want to.

When I removed “Asperger’s” from my Google search and just searched for grief and death, I saw an immediate pattern.  Most of the results talked about Elisabeth Kübler-Ross’s five stages of mourning and grief.  According to the web, these stages are universal: experienced by all people everywhere in the world. They can be experienced in any order and with varying levels of intensity. People grieving can go back and forth between stages as they work through them. Acceptance, the final stage, can take years to reach and some people may never reach it.   Here are the five stages of grief:

1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

It is said that one must experience all five of these stages in order to feel more peaceful about the loss they have experienced.

I can only speak from my own experience, but as a person with Asperger’s, I disagree.

As heartbroken as I was, I did not feel I experienced grief the same way as my neurotypical family members did. While my family members struggled with the first four stages of grief,  I only struggled with one.

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I had no denial.  My niece’s sudden aneurysm left her brain dead. Connected to a respirator and different monitors, she appeared to be sleeping. The respirator made her lungs expand and collapse – it gave the impression she was breathing.  Even though a piece of my heart wanted to believe that she was still “in there”, my brain knew she was gone.  It would not allow my heart to fantasize that some day she might come back to us.  She was gone. It was logical.  There was no denying it.

I did not experience anger either.  I watched as others felt angry at varying things, but I could not feel anger. Angry at what?  There was nothing to be angry at.  No one would have ever thought “aneurysm” in an otherwise healthy sixteen year old girl. To me, there was nothing/no one to be angry with.

I watched her mother and father bargaining.  I listened to the “if only” statements.  “If only we had..” “If only she had…” I could not feel the need to bargain because my logical brain understands we CANNOT go back in time. There is no do-over. There is nothing we could have done and there is nothing we can do now that will ever bring her back to us. There are no bargains to be made.  All the “What ifs” in the world cannot change where we are now.

Depression, however, hit me like a brick wall. Overwhelming sadness consumed me.  I felt immobilized by my sadness. Immobilized and confused.   I cried for my niece. For the loss of her. For the loss of all of the things she will never do. For the future she will never have. For the memories she will never make.  My heart broke for her.

I felt like every ounce of my energy was poured into processing the depression I was feeling.  I am not in any way minimizing my family’s grief, but at times I wished I could feel denial, bargaining,  or anger – anything but this crushing depression and sadness.  In my head I imagined we were all given a “pitcher” of grief.  Where they had four glasses to pour their grief into, I only had the one and I couldn’t stop it from overflowing.

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For individuals with Asperger’s, I believe there is another facet of grief that we feel.  A facet that maybe only we are capable of feeling – Internal Conflict.  Aspies are logic based.  In almost all instances in our lives, logic automatically overrides emotion.  The brain prevails over the heart almost every time and the heart stays quiet.  (I realize the “heart” doesn’t actually control our emotions, but for the rest of this blog, I am going to refer to the part of the brain that controls emotions as the heart.)

As I was trying to process the loss of my niece, I realized that for the first time in my life, my logical brain and my emotional heart were at war with each other.  I could not function.  Logic failed me here. 

My heart wept. It did not try to reason. It just hurt.  I felt like there was an elephant sitting on my chest. I couldn’t breathe. I didn’t want to move. Everything was a reminder that she was gone and that fact was too much for my heart to bear.

My brain, on the other hand,  argued non-stop:
You believe she is in Heaven. Why are you sad for her? Isn’t Heaven a better place than here?”
“Would you want people to be sad for you if you were in Heaven?” 

“You believe you will go to Heaven some day, so you will see her again. This isn’t goodbye. It’s goodbye for now.” 
“If she were on an extended vacation and could not see or talk to you – would be you sad for her? No. You would be excited for her so why are you sad now?”

Of course, my brain was right.  All of these things were true, yet I was stuck in this looping cycle between my brain and my heart.  Logically there was no reason to be sad. Heaven is better than Earth. Logically it made sense. So why did I hurt so badly?

This loop of brain vs. heart vs. brain vs. heart continued because I could not stop hurting no matter how logically I tried to process it.

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It was maddening.  For the first time in forever, my heart trumped my brain. I was at a loss. I did not know what to do with myself.

I talked with a counselor who explained. “You aren’t grieving for HER. You are grieving for YOU. For YOUR loss.”

That had never occurred to me.  Why hadn’t that occurred to me? It wasn’t the loss of HER future memories I was grieving, but mine.  It wasn’t the things SHE would never do, but the things *I* would never do with her.  I had spent the days after her death helping and planning and doing for others.  These are things I am good at.  For some unknown reason,  I needed permission to grieve. Permission to think of me during this time.  Permission to put logic on the back burner.

I still struggle with grief. I still  attempt to understand why I grieve. It isn’t logical, but like I said, the heart trumps the brain on this one.  The tears come and there is no amount of thinking that can stop them.  I’m not sure if that is the final stage of grief: acceptance. If it isn’t, I’m not sure I will ever find it.

I’m still coping with her loss.  The first of every month is the anniversary of her death.  I used to feel that it was one month further away from her. Further away from the last time I saw her face. Further away from the last time I heard her laugh. Further.

I don’t think of it that way anymore. That was my heart’s way of thinking.

I still prefer logic. And logic tells me that every month is one month closer to her because even for me, death is inevitable.

 

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If you are struggling with grief and this blog has touched your heart in any way, leave a comment.  It’s nice to know there is someone out there. ❤

Goodbye Small Fry: Asperger’s and Grief (part one of two)

There were four of them. Four girls, but Vanessa was always the smallest.

My daughter Ali and my oldest niece Christina were born in  1995 – just two months apart. Immediately inseparable. Both had blonde hair. Both were calm, logical, book-reading girls. When they were small, people used to think they were twins.

My stepdaughter Tori and my youngest niece Vanessa were born four months apart from each other. They were both two years younger than their big sisters.  They were so very much alike. Both were brunettes. Both were girly-girls. They loved to sing and dance and shop and drive their big sisters crazy.  Together, the girls were my Fantastic Four.

My youngest niece Vanessa was always tiny.  I even called her my “small fry”.  She may have been small in size, but she was big on personality with a big, beautiful smile to match.

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Pictured above:  L-R on the rocks:  Daughter Ali, Niece Vanessa, Niece Christina,
Pictured on the Right: In the back, daughter Ali, Niece Christina. In the front, Niece Vanessa, Son Joe, Stepdaughter Tori.

The girls have grown up together. From diapers to driver’s licenses – always together.  I look through my photos and see picture after picture of them smiling, playing, laughing.   Family vacations to Disney, Universal Studios, Holiday World.

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Pictured above: Stepdaughter Tori, Daughter Ali, Niece Christina, Niece Vanessa. Son Joe in the front
Pictured to the right, Ali, Vanessa, Christina

We’ve always been close.  We’ve always lived near each other.  My brother and my niece’s mother divorced when the girls were five and three, but I stayed close to the girls and their mom. The truth is, I couldn’t bear the thought of not being close to them.  We all lived in Arizona. When I moved to Illinois in 2000, my nieces and their mom followed soon after.  Together again.

In 2012, my husband and I moved our family to Florida.  We didn’t feel bad.  The girls were getting older.  They were busy with their teenage lives. The oldest girls – Christina and Alison – were going to be seniors. Soon they would be off to college.  It was time for us to relocate.

Christina and Ali  graduated high school last year – May 2013.  Christina was old enough to drive, and last summer my nieces drove down to see us (and the beach).  The girls were together again.  They took an overnight road trip to the Wild Adventures amusement park four hours away.  They went to the mall and the beach. They were teenagers being teenagers.  Two 18 yr old and two 16 yr old girls.  I wanted them to have this time together.  Life after high school and college changes everything. People get married. They move away.  Life pulls even the closest people apart.  I wanted them to have one more good summer vacation before the older girls went to college.  We didn’t know then that it would be the last time we would see Vanessa.

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Pictured above: The girls at the Wild Adventures Theme Park June 2013. Vanessa, Tori, Christina, Ali
To the right: Selfie in the car June 2013: Christina, Tori, Ali, and Vanessa

At the beach they made a crazy sand castle and put their intials on it: CAVV.   They took turns posing with it. Below is Vanessa and their castle.

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Sunday, September 29th, was just like any other day. It was just after six in the morning. I was on my way to the hospital to go to work when I got the call.  Vanessa’s mom said she needed me to come right away.  Vanessa had fallen and hit her head. It didn’t look good. They had life-flighted her to Kosair’s Children’s Hospital but she wasn’t responding. Could I come now?  I called in to work and turned the car around. I stopped long enough to pick up my daughter Ali. My husband stayed home to watch the boys.  My stepdaughter was in Tennessee with her mom.  There was no way she could come with us. On the way from Florida to Kentucky, phone calls kept coming in.  I spoke with the nurse taking care of my niece. Pieces of information filtered through: pupils fixed and dilated. Aneurysm.  Hypoxic brain injury.  I am a nurse. I knew these terms.  I knew what they meant but I couldn’t process them. I just needed to get there.

We drove all day and made it to the hospital late that night.  The prognosis wasn’t good.  She didn’t fall and hit her head.  She collapsed because an aneurysm in her brain burst.  She told her mom goodbye, walked out her front door and collapsed.  A neighbor started CPR almost immediately and they took her to the local hospital. At first, they thought there was hope so she was life-flighted to Kosairs, but there was nothing that could be done.   It was already too late.  Her brain was already too damaged.  The team of doctors had pronounced her brain dead that afternoon.  In order for her to be officially brain dead, the doctors would do a second test the next day.  If she failed those tests, she would be considered brain dead – legally dead.  Dead? I couldn’t even process that word. Look at her there.  She looks perfect.  Dead? no. No. NO. NO!!

I think brain death is the absolute worse death possible really.  It makes you feel so helpless.  I’m a nurse and even with all of my nursing knowledge I could not seem to believe what the nurses and doctors were telling us.  I’d look at her little chest rising and falling and her heartbeat on the monitor. I would hold her hand. She was so warm. But they kept saying “she’s gone.”  In my head, I knew it was the respirator that was making her breathe still, but… I just could not convince my heart that she wasn’t sleeping.  I can remember kissing her on the forehead and her mom saying “You’ll wake her up…” and cutting herself off and crying as she caught herself.  We all wanted her to just wake up. Please. Please. just. wake. up. Vanessa. Please. But she didn’t. She couldn’t.  She never did.

The next day, October 1st, the doctors tested her again.  She failed their tests for the second and final time.  They declared her dead via “brain death”. It was official. They were so nonchalant.  We were so heartbroken. Dead.  But..she’s so warm.  Not a scratch on her. We were reeling.  They were saying she was already gone, but looking at her lying there,  it didn’t feel like she was gone.  Even though we didn’t want to, we knew in our hearts they were right.  The brain does not heal.

Vanessa had only had her license for only a couple weeks, but she had agreed to organ donation.  We wanted to honor her wishes.  Two days later, she became an organ donor.

The hardest thing – the thing I still struggle with – is knowing that in order to honor her wish to be an organ donor, we could not turn off life support.  Her heart would beat and her lungs would breathe until the transplant team took her organs.  It felt like we were sending her into the operating room to die even though they had officially pronounced her ‘dead’ the day before.  We honored her wish, but it hurt so much to not see her take her last breath. To not be there and hold her hand. It felt like we were sending her into the OR to die alone.  I don’t think anyone can understand how that feels. I know her gift will help others avoid the grief we are going through now and I don’t regret it.  It just hurts.

The organ donation people were very nice.  They made fingerprint necklaces for us with paint and clay. They put her handprint on canvas for us. This is what we have now. Memories and photographs. Fingerprint necklaces and handprint canvases. It just isn’t enough. ❤

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Pictured above: Vanessa’s handprint on canvas-my daughter Ali painted the scene around it.
Pictured to the right: A collage of pictures of Vanessa.

Vanessa was well-loved. She baked crazy cupcakes and brought them to school.  She played soccer. She swam. Because she was so small, they called her Baby V.  After she passed, her classmates at William Henry Harrison High School in Evansville, IN wanted to do something to honor her.  They decorated an overpass with the words”We R Vanessa Strong.”  They knew she loved Marvel’s Avenger’s and made “Vanessa’s Avenger’s” shirts. Without being asked to, they sold the shirts to help raise money for her services and medical care.  They sold out of the first batch of shirts within the first few hours.

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At the first football game after she passed, the stands were filled with fans wearing Vanessa’s shirts. Even the opposing team – Castle High School – filled their stands with Vanessa’s shirts. So much love.

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Pictured above: Vanessa’s High School: William Henry Harrison High School

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Pictured above: The opposing team: Castle High School

I think about those words “Vanessa Strong” and it makes me smile.  I think about her tiny little frame. Her great big smile.  Her silly faces. Her fun-loving attitude. Her laughter. Vanessa Strong?  I don’t know.  Vanessa Spunky. Vanessa Enchanting. Vanessa OhNoShe’sNotSingingAtTheTopOfHerLungsAgain.  Vanessa WhatDidYouPutInThoseCupcakesNow?  But I would have never thought Vanessa Strong.  That’s what we are.  That’s all we can be now.  Strong.

We love you small fry and we miss you. Every day. ❤

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Pictured above: Stepdaughter Tori and daughter Ali in their Vanessa’s Avengers/Vanessa Strong shirts.

If my story has touched your heart, please take a few seconds to comment. ❤

You have the power to change lives.  Register to be an organ donor at your local Department of Motor Vehicle or here –> at Donate Life

 

NT Bingo

I shared this on twitter, tumblr and in some fb groups, but I thought I would share it here.  I can feel very anxious when dealing with people who are dismissive of my Asperger’s. My stomach feels knotty and I feel like I have to explain everything. Usually, it doesn’t matter how much we explain, if the person patronizing us doesn’t want to learn/listen, they aren’t going to.  So I’m done.  I’m done explaining my Asperger’s to those who really don’t care to know about it. 

Instead of feeling nervous or feeling like I owe them an explanation, now I remain silent and play NT Bingo. Maybe you call it Alltypical Bingo.  You really can call it whatever you want.  It works like regular bingo. You put a mark on your card to match their unsupportive statements.  If you get a bingo, reward yourself for your patience.  I used this just the other day with someone. Instead of feeling overwhelmed and anxious to explain myself, I sat back and smiled and thought “Boy, if she keeps this up, I might get blackout Bingo!” 

Hope it helps you as it has helped me. Remember, the middle square is free. Just like their ignorance.

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Pensiveaspie Expressions of PosAutivity: #AutismPositivity2014

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I wanted to write a blog about all the positive and supportive things friends/family members have said to us.

I wanted to fill this post with hope and love so others could be inspired, so I reached out again to my aspie groups and asked for their stories.

What I found was disheartening. I guess I should say what I didn’t find: support.  When I asked my fellow aspies to share hurtful things friends and family had said to them, I was overwhelmed with responses.  When I asked for positive and supportive things from friends and family, I gave them over a week to respond.  Still, the answers were sparse:

Wendy W. – “Wow, that must have been tough

Candice S. – When I told my husband, his reply was “I know” in a very casual tone. His 2 words said everything. They said that he loves the way I am and that includes the AS.

Kelly S. – “Don’t worry, you’ve always done things in your own time.”

Sue A. – “I’m glad you found answers and are embracing who you are.”
“Thank you for being so open and sharing your experience!”
“It’s good that you know this about yourself and what you can do to work on the things you want to improve on.”

So I changed the question.
Last night, I asked “Tell me something that another ASPIE has said to you that made you feel loved and supported.”  I was delighted to see this many responses in less than 24 hours!:

Abby N. – I am kind and understanding

Colin S. – I‘m glad to have met you. Your knowledge is a gift.

Aletheia K. – “I’ve felt the same way all my life, but you actually put it into words!” Or, more simply and profoundly: “Me too.”

Aubrey M. – “We are so much alike”

J.J. B. – My aspie friend has helped me by just listening and not judging

Ron K. – I understand.

Claudia A – Well, you are different. I think it’s great, and if someone doesn’t like it they can go f*** themselves.

Alyce A. – Twins!

Debby T. – We can be weird together!

Julia R.  – Being with other people with ASD can be amazing, especially if you have similar interests, and similar ways of being and communicating. I have several family members with ASD, and just being around them can feel so good because there’s no pressure to be anything different. Also I’ve finally started to understand and appreciate how earlier generations of people with AS in my family organized their lives so as to benefit from the positive aspects of AS and to minimize the more challenging and potentially disabling parts. So it’s not so much what anyone has said, it’s just the sense of the pleasure of feeling completely normal while being around others who are very similar. While also learning from them that you can be autistic and live a good life.

John T. – You guys are the only Aspies I know and you always say nice things to me.

Anne. L. – The facilitator of the Aspie Womens Group commented on how lucky my daughter is to have an Aspie Mom. I bring a level of insight and empathy to her parenting that it is unlikely an NT parent could. I really hadn’t thought about it that way before.

Sherri S. – I admire you a lot. You seem so self-possessed and competent and unruffled.  You have a golden heart.  That’s not weird. I do that too! It is more than just words. It’s a feeling of connection and acceptance. Immediate, unconditional acceptance.

Robin H. – Often times, when others say they have “been there”, they say it with a sharp tone that we’ve learned means we’re stupid and implies “quit your whining you aren’t the only one”. Whereas when my friends who are Aspies say they have “been there”, it is explained with distinct empathy showing their hearts are in sync with mine. If only the rest of the world could know how lonely of a place it is when others do not connect in that way with us.

Kerrilynn H. – You are an inspiration to others. You help others in their journeys by being so open about mine.

Anna W. –  You’re not mad, you’re not wrong, and I rather like you.  You’re neither mad nor hopeless, you’re wonderful.  You are Anna and regardless of what label anyone chooses to slap on you or whatever metaphorical box you may be put in, you will still be Anna.

Ashley M. – I know you asked what supportive things others have said to me, but being supportive of others makes me feel loved and supported myself!  Here is something another Aspie said to me: You give me strength. Because you have been so open about your Asperger’s, I finally feel like I have the strength to find my own voice. Thank you for always being so supportive.

Jenny S. – I get you. Nobody had ever told me that before.

Wendy W. – I feel a connection with you that I’ve never felt with anyone else before- I feel like we’re twins.

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I was sad to see such a lack of support from our friends and family.  At the same time I was overjoyed with how accepting and supportive other Aspies are to each other.  Sometimes, our family isn’t our best support system.  Sometimes, we have to find our own.

If you have Asperger’s or Autism and you are not feeling supported by friends and family, reach out.

There are many support groups online – especially on facebook.  Search twitter for #aspie. Email me.  There is connection and acceptance here. There is friendship here.  You are most definitely NOT alone. ❤
Go where the love is.

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