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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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

Maybe if you just tried harder… Things you SHOULDN’T say to someone on the spectrum.

This blog does not need a long introduction. The title says it all.

I wanted you to hear what NOT to say to someone with Autism/Asperger’s directly from the mouths of people who are on the spectrum.  Here are their words:

Simone B. – But you seem so normal!

Lorrain M.  – Oh but you have FEELINGS. Those people don’t FEEL.

Tama G.  – You can’t have it. You work with people. You talk normally.

Helen H.  –  Oh, everyone feels like that though.  That’s normal!

Tama G.  –  It frustrates me when people are surprised I have a husband and kids as if we couldn’t possibly have the same expectations from life. I am married with four kids. I was married and had my kids BEFORE I was diagnosed. I have had people say “I bet you would not have had kids if you knew BEFORE you had your children. Wow. What shocks me is that they somehow believe 100% that they are being some kind of supportive!!

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Vicki C.  – You are too old to have that. Only boys have Asperger’s.   Also,  “So that is your excuse.”

Ashley M. – Are you actually autistic or just a little? Aren’t we all just a little autistic?

Tabi J – I dislike it when people don’t realize that no two people with autism are exactly alike.  For example, both my brother in law and I are both diagnosed with Asperger’s, but he lives in an apartment building that have FULL TIME support staff while I live in a mobile home with my husband that we OWN. Not only that, he also takes about 20 some pills a DAY, while the only medication that I take in my life are OTC pain relievers, cold medication, and the occasional antibiotic.

Isabel C. –  It makes me nauseous when someone tries to negate my diagnosis in any way. I know best for myself what’s true and if someone really cares they will always be supportive in their words. Most of us who’ve figured out we have Asperger’s hold it kind of “dear” because it explains so much about who we truly ARE, so to have anyone negate it is negating the truest part of ourselves.

Julia R. – I know you’ve asked about what not to say to someone with AS, but what I find frustrating is how others can sometimes behave around people with AS. Both my older brother and I have had to deal with people staring at us strangely when we talk, and at times even looking as if they are uncomfortable having to speak to us at all. Sometimes the people we’ve just spoken to won’t even respond to us directly, but rather talk around and over us as if we’re mentally impaired, not aware, or not even really present. It’s annoying when I say something, and everyone within close proximity suddenly stops speaking, stares at me, and may not even respond. Often I’ll just keep talking, or find someone more open to connect with, but the stares and/ or silence can be frustrating.

Debby T.  – I always thought you were a bit weird!

Claudia A. – I think the worst thing I have ever personally been told was a very definite and confident “NO, you are not,” when I told someone I was autistic. Just like that.

T. A.-  I’ve seen Parenthood, Rainman, Sheldon Cooper, so I know all about Asperger’s

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Anne L. –  “Are you some sort of savant?  What is your special ability?”

John T. – When I try to explain that some of my behaviors are because of my Aspergers: “that’s a convenient excuse”.

 Chris H. – You’re too pretty to be autistic?!!

 Colin S. – Your grammar is too good to be Autistic. Plus, you know too much to be autistic.

Sara R.  – “I have a 7-year-old cousin with Autism, you’re nothing like him! You’re not Autistic.” Like what the heck, because I’d naturally be soooo much like a 7 year old BOY as a 20 year old FEMALE.  -.-

Tama G. –  We are all on the spectrum somewhere, aren’t we? Autism is popular now. It is the new adhd. Everyone gets diagnosed with it!  If you are a parent you get told “you must be devastated!”

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Aletheia K. – I don’t really like crowds much, does that make me autistic too?

Pam M. – “Why do you want to pin a label on yourself?”

Rachel T. –  Silence. Nervous laugh. Change of subject.

Ashley M. – But there’s nothing wrong with you.  Are you supposed to be disabled now or something?

Sara H. – You know there’s no cure for autism?

 Erika S. – I still see you as a normal person!   You must have a very mild type, because I don`t see it, and I have met autistic people. They look different.

Samuel H. – Wow, you must be really high functioning!

Corey F. – But you’ve always been like that!?!

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Renee M. –  It’s just a phase, you’ll grow out of (whatever behaviour)” Or “You could change/overcome that if you really wanted to”

Chace W. – Grow up.  Act your age.  Why can’t you just ____? If you’d only try harder.

Kelly Q. – You don’t really expect us to accommodate all your needs?

Riley K. –  You just need to…(insert “think more positively/stop being a know it all/lighten up/stop taking everything so seriously.)  You know, you could learn to be more social if you really wanted to.

Erika S. – You were not like this before. You could cope more. The whole AS is just an excuse

Susan D.  – well, we all have our issues/problems – said by a bully

Sue A. – “You don’t seem like an ‘Asperger’s patient’ because you look me in the eye when you talk to me and there is a connection.” My old shrink actually told me this!

Aletheia K – Everyone feels left out/friendless/alone in a crowd *sometimes*

 

When someone shares their Autism/Asperger’s diagnosis with you it is because they trust you. Listen to them.  For the most part, we are very straight forward and logic-based. If you are unsure how to be supportive, just ask.  “What can I do to support you?”

Dismissing our diagnosis by claiming “everyone feels that way” or listing the reasons we couldn’t possibly have Asperger’s does not help us.  Just because you’ve seen Max on Parenthood or Sheldon Cooper doesn’t mean you know what people with Autism are like. If you’ve met one person on the spectrum, you’ve met ONE person on the spectrum.  Are all non-autistic people alike?

“Asperger’s is sometimes called the Wrong Planet syndrome. This is because we feel like we come from a different culture and have a different way of perceiving the world”  – Tony Attwood.

For many of us, our diagnosis is something precious to us.  We’ve spent our entire lives feeling disconnected from others. We’ve spent our entire existence trying to modify our behavior to fit in and feel connected. Our Asperger’s diagnosis allows us to finally understand WHY we are so different.  It answers a lifetime of questions for us.  Once diagnosed, people with Asperger’s often seek out other people with Asperger’s and find that  – for perhaps the first time in their life – they connect. Don’t dismiss our diagnosis because you can’t understand it.

What CAN you say?
Watch for my next blog and see.  🙂  Until then.. remember this advice from the Autistic Self Advocacy Network:
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You make me feel disabled. Yes, you.

DISABILITY

When I think about my Asperger’s, I rarely think of it as a disability.  Most of the time, I don’t feel disabled.  I’m definitely differently abled.  There are weaknesses, but there are strengths too. I choose to focus on my strengths and work on my weaknesses.  Even though I prefer not to look at myself as disabled, there are things that friends, coworkers, and family members do that make me feel disabled and incompetent.

You don’t recognize that my body language is almost incapable of lying.

With practice, I have learned the art of conversation. Time has taught me that people really only want others to agree with them.  I can find a way to avoid hurting your feelings by complimenting your ugly dress without lying when you ask “Don’t you just love it?”  I can reply truthfully “That orange color is so bright and perky!” (Yes. The color is bright and perky but the dress is still hideous).   After years of getting it wrong and hurting feelings, I finally learned to look for something I like or agree with and focus on that particular attribute.  My words can express an agreement and hide my dislike for certain things, but my body language is almost incapable.

When I find something distasteful, I frown. I look disgusted.  It’s automatic. I have to remind myself to change my facial expressions.  I have to force myself to relax my face. Relax my furrowed eyebrows. Smile slightly. Nod.  It took many years to master the skill of NOT blurting out my opposing opinion.  If I don’t like you, it probably shows on my face. I have to remind myself not to shake my head “No” when I look at you.  It is almost impossible for me to act like I like you.  Because I cannot fake it, my friendship is genuine.  If I act like I like you, I really do.  Unfortunately, most non-aspies are the complete opposite.  Non-aspies are super friendly to people they like AND people they despise.  They are very dishonest in their interactions with each other. Because of this, they are unable to see the honesty in my interactions.  This leads me to my next point:

You say one thing, but do another and expect me to know what you mean. 

Social norms and rules are hard for me.  I’m a concrete thinker.  I see things in black and white. There is some grey, but not much.  When people say something, I believe them. When they say one thing, but do another it confuses me.  Should I believe what they say or what they do?


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 The non-Aspie (NA) girl in this comic clearly states she doesn’t like Kay. Kay is fake.  Yet when she sees Kay, she smiles and compliments the very attributes she just criticized.  Does she like Kay or not?  My aspie mind puts it together like this:

  • The NA girl SAYS she doesn’t like Kay but then ACTS like she does.
  • This NA girl must ACT the opposite of what she SAYS.
  • Wait!  She ACTS like she likes ME.  Does that mean she doesn’t?  Does she talk bad about me when I’m not around?
  • What do I believe?  Why is this so hard?

And Non-Aspies wonder why we hate socializing.  If I asked this NA girl about Kay, I can assure you she would say that she TRULY likes me, but not Kay. I am special.  I am different. I am not like Kay.  Yet the next time she is around Kay, she would be smile and compliment her and display every external sign of friendship. Which NA girl is the truthful one? The one talking to me or the one talking to Kay?  I can’t figure it out and it makes me feel isolated.

You make me feel guilty for things I cannot control and belittle how I feel.

Anxiety is anxiety.  Whether you feel anxious because of a tiny mouse or a large group of people, anxiety is anxiety.  People with Asperger’s often have sensory issues. Loud noises, loud places, new places can be very uncomfortable for us.  Even large family gatherings with people who love us can make us anxious. When you dismiss our anxiety with a wave of your hand and a roll of your eyes, you say our feelings don’t matter.  Your dismissal of my feelings increases my anxiety because I feel I have disappointed you. I feel like I cannot do anything right.

Because sensory issues play a big part in our lives, we often prefer specific foods.  Forcing us to try new foods and chastising us if we don’t proves to me that you don’t respect my boundaries.  I am an adult.  I know what I like and what I don’t. I prefer certain tastes and textures.  Personally, I find certain new foods overwhelming – so overwhelming that I will check the menu of a restaurant and cancel a dinner if I don’t feel there are any “safe” foods on the menu.  When you demand that I try a new dish, my anxiety increases.  I don’t like the way it smells. What if I don’t like it?  Then I have disappointed you again. I have failed.

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You don’t respect my need for stasis.

It is common knowledge that people with Asperger’s have a degree of rigidity but we are NOT inflexible.  We like predictable events. We do not like surprises. Respect that.  Don’t drop by unannounced.  If plans are going to change, give us time to adjust. We can handle managed chaos quite well.  As a nurse, I know there is no way to predict what will walk through the door at work. I anticipate this chaos and it is manageable. I know it will be chaotic.  I expect it.  When you know I like predictability yet you change our plans and surprise me, you are saying that my needs aren’t important.  When you surprise me and then act offended that I’m feeling discombobulated, you add insult to injury by making me feel like my natural reaction is wrong.  You make me feel like I don’t have the right to react.

Socializing is exhausting for us.  Most aspies have something they do to unwind. Some read. Some absorb themselves in a favorite video game or television show. We write. We crochet. We build models. We do puzzles. We do anything to disconnect from the world and escape back into our own mind.  We need this time as much as you need oxygen.  Socializing (for us) is the same a s physical workout is to you. It is draining. We need to recover.  When you don’t allow me to have my down time, you force me over-exert myself. I feel like I’m running on fumes. I’m short. I’m snippy. I’m completely exhausted.  When you act like my need for downtime is selfish, you make me feel like I can’t be myself  – like I have to be like you. You make me feel like the person I am is not enough.

When you do accommodate my needs, you are vocal about it.

Although you think you are, you aren’t being supportive when you say things like:

  • “I know Pensive doesn’t like to eat anyplace new, so THAT restaurant is out of the question.”
  • “You don’t have to try this appetizer even though I made it special because I knew you guys were coming. I know how you are with new foods.”
  • “I know how you get.”
  • “No. Go have your down time or whatever it is.”

These statements are all passive aggressive.  They imply you are trying to support me, but the support stops there. Asperger’s is a neurological disorder.  If I had a stroke instead of Asperger’s, would you say “I guess I’ll have to help you dress yourself, AGAIN?”  Would you complain that I often spilled while struggling to feed myself? No.  You wouldn’t. But you complain about accommodating my Asperger’s. You make me feel like a burden. You make me feel toxic – like I ruin everything I touch. You make me feel like the world would just be better off without me since I am just so damn difficult to deal with.

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You talk to me as if I am simple-minded.

Having Asperger’s does not lower my IQ yet I have had people suddenly start speaking to me as if I have an intellectual disability after they learn of my diagnosis. These are people who are supposedly aware of what it means to have Asperger’s. People with family members who have AS. Yes, I have Asperger’s, but that doesn’t mean you have to speak to me in one syllable words as if I were a toddler.  While I may lack social skills, intelligence is something I pride myself on. Talking to me slowly and clearly while nodding your head “yes” only makes your ignorance even more obvious.  If you are not sure what I need, ask.  My speech is not impaired. I assure you I can tell you exactly what I need.  When you talk to me like I am a small child, you dismiss me as an intellectual. You rob me of the attribute I am most proud of.

You do these things.

You do.

The people I love. My friends. My family.  My coworkers. In one instance you shrug your shoulders and roll your eyes to dismiss my Asperger’s and anxiety, but in the next instance you act as if I am so disabled by my Asperger’s that accommodating me is a burden.  Which is it?  Is my Asperger’s non-existent  or is it SO existent that it burdens you? You make me feel less than. You make me feel disabled.  You make me want to hide inside my mind because the fear of never being good enough is too much.

What can you do?

  • Don’t pretend to like me if you don’t.  You can be polite without being friendly.
  • Be honest and straightforward. Say what you mean. Mean what you say.  Don’t say it mean.
  • Respect my boundaries. Don’t force me to do things/try things I don’t want to do.
  • I am not neuro-typical. Please don’t expect me to be.
  • Recognize that I am a planner.  Let me know as soon as plans change.
  • Let me have my down time to recharge.
  • Don’t be passive-aggressive.
  • You don’t always have to accommodate me.  If you want to go, and I don’t – go anyway. My feelings will not be hurt. I would probably rather hear about it than actually be there.
  • Talk to me the way you would want me to talk to you. Don’t patronize me or talk down to me.
  • Research Asperger’s. Ask questions.

 

It boils down to respect.  Respect my limitations and celebrate my strengths with me. Just like you, I am more than just my weaknesses.

 

Toxic

Before discovering I had Asperger’s, I felt toxic.

Toxic to those closest to me.  Toxic to my family.

 There have been statements that Aspies do not have empathy. I could devote an entire blog to that, but not today. We DO have empathy. This meme below from The Aspie Coach explains it perfectly.

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Compassionate and affective empathy can be VERY overwhelming for us.

Complaining is a big part of socializing for neurotypicals (NTs). I know everyone complains, but NTs do it differently than Aspies. They often gripe just for the sake of griping. Family members would talk to me about issues with their spouses/family. They would complain about how miserable they were and how unhappy their lives were. They would list all the reasons for their misery and I would be their biggest supporter. I would feel their pain and want to cry. They promised to take action, and I encouraged them. I would champion behind them, willing to help in any way.

The only problem was this: When neurotypical people talk about their problems, they often don’t want to do anything about them. (Really!) They want to SAY they are going to leave their husband/wife. They don’t want to DO it. They want to SAY they are going to tell their disrespectful stepchildren that they cannot borrow any more money, but they don’t really MEAN it. In fact, the next day they are kissing their spouse and lending more money to their rotten stepchildren. They seem perfectly fine. It’s baffling. Although the NT person had come to terms with their feelings, I had not. I was still feeling deeply hurt for them.

I often did not know what to do with these intense emotions. I still felt hurt/betrayed by the people who had hurt my family. My behavior showed it. I had a hard time being kind or friendly towards those who had hurt them.  Instead of feeling supported, my family members would become angry with me for being hurt. They would say I was the person “causing problems.” I couldn’t understand. I was just trying to be supportive. To add insult to injury, my reactions would often cause them to become even closer to the person they were complaining about to begin with. Somehow everything would get twisted. It was no longer about the person hurting them. It was about ME reacting to the person who hurt them. It was my fault. I was toxic.

 

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Wouldn’t it have been easier and more logical for the family member to say “I’m upset with my husband right now because he called me fat earlier today. I know tomorrow I’ll be ok, but right now I need to vent.” I can understand that. I can relate. I won’t get upset because I know you’re just venting.

But no. People raise their voices, cry, and say things like “I am done! I’m just DONE! I can’t take it anymore. We are OVER. I’m tired of him calling me fat. I’m tired of him making me feel stupid! I need to leave him!” They are passionate. I can’t help but want to help them. Do you need me to call women’s shelters? Do you want to stay here? How can I help make it better? Some NTs actually go as far as to make plans. But then the next morning, all that emotion is gone from them and they blame you if you scowl at the husband. His behavior – calling her fat – is now perfectly acceptable. My scowl is not. “But.. Pensive.. I didn’t want him to KNOW I told you that!” Then why tell me at all? Why raise your voice and say you are leaving? Why not just be HONEST.

You see – for the most part – Aspies say what we mean and mean what we say. We think others do too.  Before I knew I had Asperger’s I felt like I was going crazy. People kept saying things they didn’t mean. I felt like I couldn’t trust anyone because people LIE constantly. They would say their stepchildren were moochers who didn’t repay their loans in one breath and deny the statement with the next. Mamby-Pamby. Wishy-washy. Which statement is true?

Another fine feature of being an Aspie is the inability to hide disdain. If I don’t like something, it is obvious. I have a hard time masking it. Family members became upset and afraid I would reveal our conversations.  They would tell me horrible things and then expect me to as if nothing was wrong. When I could not, they would say I was the problem. Toxic me. Again – it wasn’t about the other person’s awful behavior. I shouldn’t have pointed it out.

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Since discovering I have Asperger’s I realized something. I AM NOT TOXIC. I am not. I realize that my beautiful brain has amazing abilities but it also has limitations. My brain short circuits around people who constantly say one thing but do another. My brain is wired for honesty. My brain wants to believe that you mean what you say. It is too exhausting to try to sort through every statement to figure out which conversations are true and which are just conversations to “blow off steam.” It’s too much.

I explained this to my family and it was met with mixed reception. My request was simple: If you’re just venting, please let me know. It’s a simple request, but some people could not honor it. Although it was hard, I removed people from my life who could not respect my limitations. Some are people I love dearly. A part of me hates that we are no longer close, but a bigger part of me loves that I am no longer TOXIC.

Does your family make you feel toxic? You are definitely not alone. ❤

 

 

 

 

 

We’re introverts. You’ll have to get over it.

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Did you see the chart above?  I couldn’t have said it better myself.  NT (or neuro-typical/non-autistic people) relax by socializing.  For those of us with an ASD (Autism Spectrum Disorder) such as Asperger’s, socializing is the very opposite of relaxing.  Loud, crowded places (gyms, malls, etc) are over-stimulating. They are too busy. Too loud. Too much.

Being social and going to group events is exhausting to me.  When I go to church (Especially a new church), I tense up every time they say “Now turn to your neighbors and shake hands!”  UGH. No. NO. NO.  No thank you.  The social activities that are fun for the rest of the world are often overwhelming for us.  Too many people. Too much noise. Where do I put my hands when I stand here?  Do I look as uncomfortable as I feel?  Is there a corner I can go to? A cat I can pet?  Ugh.  The worst part is – we RECOGNIZE that we are uncomfortable and we HATE it.  People say “If you know what causes your anxiety then you won’t feel anxious!”  That is 100%, absolutely, totally NOT true.

You react with anxiety at the thought of a little tiny spider or a mouse. You know these tiny creatures make you anxious.  Are you less anxious around them because you know they cause anxiety? No.  We react with anxiety at the thought of socializing in group settings.

 

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Please don’t try and suggest “fun” ways to make it easier.  If you think there is something we haven’t tried, you’re probably wrong.

Please don’t make light of our anxiety because you don’t think it is a “big deal.”  I love snakes and spiders and bats and rats and all things creepy-crawly. I don’t understand why normal women jump on furniture and shriek at the thought of a 6 ounce mouse running across the floor or scream if someone hands them a frog. The difference is I don’t tease you for your response just because my response would be different. The mouse is obviously a big deal to you and I respect how you feel. Even though I may think your reaction is over-the-top and silly – I would NEVER try and make you feel less-than for your instinctive reaction. Please  give me the same respect even if you do feel my anxieties are silly.

Please don’t guilt us into coming to your social event or make us feel bad if we don’t go.  You don’t like Spiders and Snakes. We don’t invite you to hold a tarantula or enjoy the reptile house on your day off. We respect that you have your anxieties. Please respect ours.

The best way I can describe to you how I feel at parties is this: Imagine you are uncomfortable around rats and mice. I invite you to come to lunch with me in a room filled with loose rats and mice. I tell you not to worry because they’re all tame and they won’t bite you, but they will crawl all over your feet and the table we’re eating on. I might even expect you to share your sandwich with them.  Logically you know the mice are small and have no intention of harming you. Would YOU feel comfortable?  Would you ENJOY your lunch?  How would you feel if you declined the invite and I kept calling to say things like “Seriously. It’s all in your head. It’s harmless! What are you so afraid of?” “You never eat with me in the mouse room when I invite you. Why do I even bother being your friend?”  Can you see where I am coming from now? Can you see how unfair that is?

Please let us have our down time. Our quiet time. Our time to relax and refill the energy we need to take on the next day, the next situation. We’re not lonely. Although I know it may seem foreign to many neurotypical people – I LIKE being alone. If I’m home alone on a Sat night with a good movie or a good book and a slice of pizza, it IS a great night for me.

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Finally – please, PLEASE don’t tell us it is all in our head and we can just ‘get over it’ if we TRIED HARD ENOUGH.  You’re right about it being in our head. Our brains are WIRED differently. There are MRIs that have proven the electrical activity in our brains IS different from those of a normal ‘neurotypical’ person.  Telling us we could ‘get over it’ if we wanted to is like telling a person with Muscular Dystrophy that they could run if they just TRIED hard enough.  You would NEVER do that to them. Please don’t do it to us.

 

Labels… not just for soup cans.

Labels.  We use them all the time to describe ourselves.  Sometimes they are family related: Mom. Dad. Sister. Brother. Aunt. Uncle.   Sometimes they are career related:  Musician. Fry cook. Cashier. Teacher. Lawyer. Nurse.  Others we use to associate with a group: Deadhead. Geek.  Goth. Trekkie. Cancer Survivor. Some labels are racial or cultural.  Some are religious. We even use labels to describe how we look: Blonde.  Towhead. Ginger.  We use labels not only to describe ourselves but to belong to something bigger than ourselves.

When I label myself as a “Mom”, it signifies I have children and that I am part of the mom club. I understand stinky diapers. I can relate to eye-rolling tweens.  I am proud to be a Mom. No one disapproves if I call myself a mom.

I can also label myself as “Wife.” I can relate to other wives when they talk about the give and take of marriage.  I can associate with other wives as we joke about the ways our wonderful husbands drive us crazy. I am proud to be a wife. No one disapproves if I call myself a wife.

Another label: Registered Nurse.  I understand the joy and grief of patient care, I know how empathy, compassion, and a sometimes slightly morbid sense of humor are a vital part of being a nurse.  I am proud to be a nurse. No one disapproves if I call myself a nurse.

I could continue labeling myself with countless labels: Aunt, Sister, Friend, Hearing-Impaired, Bibliophile, Pet-Owner, Introvert, Christian, Liberal, Geek, Knitter, Writer,  and so on.  Even though these labels may not relate to each other, they all define me.  The picture of me becomes clearer when more labels are applied.  My niece might describe me as:  My brunette, geeky, knitting Aunt who is a liberal and a Trekkie when she’s not buried in her books (bibliophile).  🙂

Labels are just another part of the way we describe ourselves to the world and the way the world describes us.
HelloAspie
Aspie. That is another label I can – and DO use – to describe myself. I am an Aspie. I have Asperger’s. I know all too well how it feels to be socially awkward. I know the anxiety of being in a crowd around people I don’t know.  I can relate to other individuals with Asperger’s as we share our experiences about life on the spectrum. I am proud to be an Aspie.  I wish I could say no one disapproves when I call myself an Aspie, but that would not be true.

Learning I had Asperger’s was one of the best things that has ever happened to me.  I realized for the very first time in my life that there WERE other like-minded people out there.  I had spent so many years trying to figure out why I wasn’t like ‘everybody else’. I had wasted so much energy trying to change myself so I would fit in.  My Asperger’s diagnosis set me free.  I finally realized that the traits that I thought made me so different were the same traits that were perfectly normal for a person with Asperger’s.  I was normal. For an Aspie, I am completely normal.

When I told friends and family about my diagnosis, some said things like:

  • “Don’t label yourself.”
  • “Labels are for soup cans.” 
  • “Don’t let this define you.”
  • “It’s probably best if you don’t tell other people about it”

They said it as if  “Asperger’s” was something to be avoided.  They said it as if being an Aspie was a negative thing.
That is so disheartening to me.

 

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I have Asperger’s. I AM an Aspie.  Medical science states that my brain is wired differently than those who do not have Asperger’s.  Like my brown eyes and my light brown hair – it is in my DNA.  Because Asperger’s is a neurological difference in my brain,  it affects how I process information. Unlike being a nurse or a knitter, it isn’t a choice.  Choosing not to use the label “Aspie” to describe myself does not make my Asperger’s disappear.  Denying my brown eyes does not make them less brown.

No one would ever say to a person with Down’s Syndrome “Could you NOT label yourself with Down’s?”  No one would ever tell a person who has survived cancer NOT to say they were a “Cancer Survivor”.  I cannot understand why people ask us NOT to identify with Asperger’s.

To me, having Asperger’s is an important part of who I am in the same ways that being a mom, a wife, and a nurse are.  “Aspie” isn’t just another label. It’s the casual term for Asperger’s Syndrome.  Asperger’s Syndrome is a stiff white button down shirt.  Aspie is a soft, well-worn cotton tee that you’ve kept for years.  I can use the casual term because I am 100% comfortable with being an Aspie.  Like that old cotton tee, I don’t care if other people think it isn’t perfect. It’s mine and I love it. I don’t want to change. I’m done trying to fit into the cookie-cutter Abercrombie mold that I tried to belong to for years.  I’ll keep my soft, comfy tee even if it isn’t in style.  It’s my style.

Being an Aspie means I am part of the larger community of people living with an Autism Spectrum Disorder (ASD).  It is a community where  I am accepted exactly as I am, encouraged, supported, and loved.  In here we share our weaknesses and celebrate our unique strengths. Many in our community have been bullied, belittled, and excluded by their peers, their friends and even their families.  This community does not share the same social standards as the secular world.  Superficial things such as hair, clothing, make-up, name-brands, socioeconomic status, and popularity which are so important to the outside world mean nothing here.  Kindness, compassion, empathy, and encouragement are the traits that are embraced.   I am in awe of my fellow Aspies.  Even with all of the hurt and rejection they have endured, they keep reaching to others with compassion.  There is an amazing amount of reception and love here. It is a community I am PROUD to be a part of.

I will not deny my awesome Aspie-ness because others are not comfortable with it.  I will not deny it because I remember how lost and isolated I felt before my diagnosis.  I know there are others on the spectrum who feel alone because they have been told to feel ashamed of their ASD.  I have found that the more I talk out loud about being an Aspie, the more OTHERS talk to me about their children, their friends, or their spouses having ASD. These conversations might have never happened if I had followed the advice of friends and family who begged me not to “label” myself.  I talk openly about having Asperger’s so people can talk openly with me.

I AM an Aspie and I am proud.  If you have Asperger’s or if you are on the spectrum, you are not alone.  Let’s talk.

 

 

We are not alone.

“I’m never alone. I’m alone all the time.” – lyrics from Bush’s 1995 single “Glycerine”

These two simple sentences encompass how I have felt my entire life. Surrounded by people – people who looked like me – while knowing that inside I was alone and completely different from everyone else.  It wasn’t just something I *felt*.  It was something I had been told time and time again by peers, teachers, friends, and family.  I can’t count the times I heard the words Odd, Quirky, Weird, Strange, Geeky, and Nerdy. I’d be rich if I had a nickel for each time I heard the phrase “You’re a black and white thinker and the world is not black and white.”  My inability to express how I felt in a way others could understand gave the impression I was Cold, Unemotional, and Incapable of Being Hurt.  They thought my apparent lack of emotion meant I was “Strong” but inside, my inability to fit in made me an emotional train wreck.  (What does being strong have to do with NOT displaying emotion, anyway?).

I originally chose ET as the cover photo for my blog because I have always related to aliens.  ET, the aliens on the TV series “V”, the infallible Mr. Spock – any type of intelligent alien confused by the behavior of  humans.   Often in shows with aliens, the alien must disguise himself in order to infiltrate or fit in with humankind. I emulated their behavior.  I already LOOKED like everyone else. I just had to learn how to *act* like everyone else.  I felt like everyone had been given some kind of instruction manual on how to make friends and please people that I had not been given.

“Half of the time I don’t know what they’re talking about; their jokes seem to relate to a past that everyone but me has shared. I’m a foreigner in the world and I don’t understand the language.”~ Jean Webster

In time I became an actress of sorts. I created a social persona – a character I pretended to be at school and with friends.  She was goofy and over-the-top and liked to make everyone laugh.  People always seemed to like individuals who could make them laugh. As I have grown older, I have created several characters I play to function in the world:  The Work Me, the Friend Me, and so on. Like the aliens I identified with, I grew up feeling I had to alter my behavior and disguise my true self to fit in. I felt alone and wondered if I would ever be able to show anyone the real me and have them love me.

AlienAspie

Growing up, I never heard the word Asperger’s.  The word autism brought to mind the non-verbal child who rocked and played with a spinning top for hours on end.  There was no “high-functioning” in the autism world back then.  Like so many other undiagnosed “Aspies”, I was highly intelligent. By the time I reached 4th grade, my small elementary school told my parents I was reading beyond the high school level and they had run out of textbooks for me.  My teachers praised me. My peers belittled me. I was bullied in elementary school and junior high for being too smart.  I was naive and easily tricked by false kindness.  I was hurt often because I believed my differences were my fault. I wanted to believe that if I just tried harder, I could be like them.

Peer interactions quickly taught me it was better not to be too smart if I wanted to have friends. I learned how to dumb myself down.  In my freshman year, I went to a new high school. Traumatized by years of bullying, I talked to no one. I observed. For a year, I spent my lunch hour keeping a journal on behaviors.  I read every psychology book I could get my hands on.  I studied how students talked to each other. I practiced and mimicked their behaviors in the mirror at home.  A closed lip smile while tilting the head to the left with a little sigh meant “That is so sweet/I agree/or Awwwwe.” My preferred posture – arms crossed in front of my chest while avoiding eye contact was not appropriate.  It was during this year that I created the goofy friend persona that helped me survive high school.  She was emotionally exhausting to maintain.  After school, I would turn off School Me.  I had a large papasan chair in my bedroom. I would tilt it so it became a bowl and climb in and cover myself with a heavy comforter and sleep (like a big, aspie pot-pie).   I can’t count the number of times I cried “What is WRONG with me? Why am I so different?”

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Like others with Asperger’s I had a strong sense of justice. My moral compass was sound.  I did not drink. I did not do drugs. I did not party. Of course these behaviors only further alienated me from my teenage peers.  It wasn’t that I didn’t *want* too. I simply could not.  Doing these things was 1) Wrong and 2)meant I might lose control. If I lost control, the real me might slip out and then everyone would laugh at me.  I was the very definition of  “tightly wound.”  If school wasn’t exhausting enough, my life at home was a struggle.  My father worked out of town and my mother suffered from a manic-depressive disorder with episodes of paranoia.  That’s a long story for another time.  The bottom line is: for me, there was no safe place. No place to exhale. “Suck it up cupcake” was my motto. There was no other option.  I had to keep moving if I wanted to survive.

Every lesson I learned about social interactions, I learned the hard way.  Until last year, I believed I was still alone in the universe. My hope that the mother ship would someday come for me was fading fast. I was 39 and at a breaking point.  How much longer could I live in a world that would never accept me? How much longer did I want to struggle? How much longer could I be constantly misunderstood?  I had started a new job and experienced what so many others with Asperger’s face: Employers are less interested in your skill level and MORE interested in your ability to socially interact with your peers.

Work Me is excellent with our patients, but I often have no interest/energy in the small talk necessary to maintain peer relationships at work.  I simply don’t care about your new bag or your monogrammed hoodie. I’m not interested in the 134 pictures of your kid at Disney. (Maybe 10, but sheesh.) I have a very hard time pretending I do.  Past experience has taught me that when I feign interest – even if I think I am doing a good job of faking it – the other person ALWAYS knows it.  My director said that I wasn’t “aware how my interactions affected coworkers.”  She couldn’t tell me who I might have offended.  She couldn’t give me an example of something I said or did.  Just ‘try harder’.  Try harder? Without clear direction I felt lost. I over-analyzed every conversation.  I was afraid to speak to coworkers for fear that I might not ‘realize’ how I presented myself. Then I was afraid if I DIDN’T speak to coworkers they would think I was rude.  The thought of going to work made me nauseous. I needed this job. My family depends on my paycheck.  I felt like I was in junior high all over again. I was at the very end of my rope and almost ready to let go when I learned I had Asperger’s.

For me, my Asperger’s diagnosis was a great relief. It was the answer to my “Why am I SO different?” question.  I cried the first time I talked with a fellow Aspergian. I sobbed like a baby. It was the first time I found someone else like ME.  I went through counseling and read everything I could read. I’m still reading. I started an online support group on Facebook and “met” others with Asperger’s.  I call them my Aspie family and they are. They really are.  Asperger’s is a spectrum disorder and my “family” is all over the spectrum but we share a commonality in the way our brains are wired and the way we perceive the world. We know all to well the pain of being left out and misunderstood.  We all know how it feels to wonder “Am I really alone? Is there anyone else like me?”

Writing has been a form of therapy for me for as long as I can remember. Writing and music are my catharsis. They are often the only way I know how to purge my emotions.  I have wanted to write for such a long time, but I worried that I would not have anything to say that had not already been said.  A lifetime of being told I wasn’t good enough made me fear I would fail.  I couldn’t take another failure.

Recently at work, I had a conversation with an esteemed physician and her colleague.  We discussed parenting, children and somehow ended up on the topic of Asperger’s.  I felt comfortable enough to tell her about my diagnosis.  We had an amazing conversation about the needs of the Autistic community.

I shut off Work Me and turned on Real Me.

Autistic Me.

Flap My Hands Because I Am So Excited Me.

We chatted off and on for almost an hour.  She told me I was “Amazing”.  She called me an “excellent resource.” Her colleague said I should write a blog and then a book. He told me my insight was “invaluable.” The physician asked me to call her. She asked if I wanted to collaborate with her.  She discussed starting a possible Asperger’s Support Group.  She told me I really do need to start a blog. Me.  Not Work Me. Not Pretend Me.  Me. Autistic, Authentic Me.

I have become so accustomed to hearing what I am doing wrong – how I am less-than, that is has become a form of normal for me.  Hearing the words amazing and invaluable took my breath away.  Part of me was afraid that it was almost a dream.  That conversation gave me the confidence to banish (or at least shelve) my fear of failure.  I do have something to say.  No one has told MY story. No one else can.   I know there are others out there like me who have spent their lives looking for commonality. Connection.  I want to reach out to them.

It is so easy for those of us struggling with Asperger’s to feel alienated – alone.  This world reminds us every day of all the ways we are different.  Our fear of being ostracized keeps us from reaching out to others. I know it has kept me quiet for so long, but not any more.  I am tired of waiting to be picked. I am done shrinking. I am reaching out.  Take my hand.  I am going to end this blog and each blog thereafter with the four words I spent most of my life searching for:

You Are Not Alone.