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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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. ❤

 

 

 

 

 

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.

 

donttell

 

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.