Maybe you don’t know this…

hello my name isSometimes I wish I could wear a button.

Or something similar.

Like this name tag.

<———

It would open up the door to the conversation that I seem to be having more and more often these days. “Hi Tara. Can you explain to me what having Aspergers means?” Then I could go on this longish (but really short direct and to the point cause you know I have Aspergers) rant about lack of social filters / eye contact problems unless I initiate (and really like you) / most people think I’m kind of rude but in fact very sensitive yadda yadda yadda, blah blah blah and thank you for taking the time to listen and hopefully this will help us both understand each other a little better from here on out.

Having Aspergers sucks big hairy fucking monkey balls.

Having to explain that you have Aspergers sucks even more.

asperger_symptomsEven this blog post is upsetting me. The last couple of weeks I’m finding myself trying to stop the world spinning around me and explaining again and again that “No, I’m not rude. No I’m not trying to be mean. I’m sorry that sounded harsh. Smiling doesn’t come naturally to me. Rules are very important to me. I don’t have the same social filters as you. Have you ever heard the term parallel player? Yes, I would like to sit with you but don’t know how to initiate social interaction. No I’m not talking down to you.  No, I’m not insensitive, I just don’t know how to process emotions like you do…”

I work at Costco. I love my job. It’s sweaty. It’s physically demanding. It’s fast paced and somewhat chaotic (but very controlled). I roll hot dogs. I stick my hands in elbow deep soapy water and wash dishes. I haul garbage. I swirl ice cream around on cones. I wear a hairnet and say “howdy” when I’m ringing in someone’s order. It’s much much much different than my professional life as an interpreter and the money is about 1/4 of what I’m used to making. But I love it and I’d like to stay at Costco for as long as possible and climb that “corporate” ladder like it’s no one’s business.

But

The interactions of late with people not a) knowing and b) understanding what it means to have Aspergers leaves me feeling very frustrated and ashamed of myself. Most days on my drive to work I fret over whether or not I’m going to do something wrong (and by wrong I mean NOT wrong like steal money but wrong like say something that offends someone or not interact properly). That seems to be happening a lot.

I’m really sorry I have Aspergers. I’m embarrassed by it. My whole life I’ve been described as the following (meaning the people I am close to usually at some point say this to me): “You know Tara, I thought you were a real bitch when I first met you but then you turn out to be one of the nicest people I know”

I can’t even begin to explain to you how hard I work at keeping this little (and by little I mean super fucking BIG) part of me swept under the carpet. It’s like being downstairs and running upstairs every 30 seconds to make sure the lights are turned off. I’m constantly checking to make sure my Aspergers is turned off…funny thing though, you can’t turn it off. Ever. So I’m constantly apologizing for my behavior that isn’t a behavior.

“I’m sorry I said that”

“I’m sorry I make noises”

“I’m sorry that wasn’t my intention”

“I’m sorry I needed clarification”

“I’m sorry the light is bothering me”

“I’m sorry it’s too noisy”

“I’m sorry that sound raises my anxiety”

“I’m sorry I’m sitting apart from everyone”

“I’m sorry I’m rocking”

I try to explain it in a joking manner: “Think of me like Sheldon from Big Bang…Just not as smart“. I try to explain it simply: “my brain is wired a little differently than most”. I try to explain it in everyday language: “It’s like I’m driving around in a particular car, that I know really well and then all of a sudden I have to stop, look for a new car, get in, figure out what’s what and what’s where, recalculate my driving directions, get to where I’m going then go back and find my original car in order to continue on with my day…that’s what it feels like when something happens I wasn’t expecting like someone saying hello.”( <—- I’m not joking.)

I really want to just be the best I can be. If I could wish anything away it would be this part of me that is so entrenched in my cells. I don’t want Aspergers to keep me from reaching my potential with Costco or with anything. I try to bend to what I think other’s want to see in me and yet by the end of most days I’m so emotionally distraught that I *might* have said something / done something wrong I spend the 10 minute drive home crying and second guessing my ability to just.be.normal.

Sometimes I wish Aspergers came with a bodily warning of some kind. Something recognizable so that people could whisper to each other “ooooooooh look at Tara. She has Aspergers. You can tell because her left ring finger is purple (or maybe my right eye would be down by my mouth or something)” That way when people approach me there is a hush hush of patience before the first word is spoken to me. Instead I have to deal with “another member complained” or “maybe try not to be so direct next time”… When you see people with Down Syndrome or in a wheel chair or missing a limb or something really obvious you pause ever so slightly and then react. That’s what I wish for with me. Just to pause before initiation. To understand the reaction and to not make assumptions of my rudeness or my lack of compassion.

I’m extremely sensitive. Case in point. Last week I was over at my in-laws and an adult deer walked along the path behind where they live. It was injured. Still walking but one leg was obviously in serious trouble. I’m still constantly thinking about that deer. Is it alive? Is it eating? Is it suffering? I lay awake at night wondering what has happened. I stare out their window wondering if I’m going to see it. Should I leave food out just in case? This will go on as long as my in-laws live there. No lie. Every time I’m over there I will look out the window and wonder what happened. That’s also a part of my Aspergers. I’ll probably cry over that animal later today because I don’t know how to process emotions and I’m writing about it right now.

I’m not making excuses to just accept my Aspergers. I recognize that what comes out of my mouth most times sounds rude and I’m always apologizing because it helps me to understand what’s appropriate (by society’s standards) and hopefully teach me to do something differently next time.

I am, however, asking the world to have a little more patience with trying to understand what can’t be seen. I know it’s difficult in this fast paced, don’t look back, react first, we all should be the same kind of life we live. I try really hard. I try really really hard…

And just in case: “I’m sorry”

21 comments to Maybe you don’t know this…

  • This has been hurting my heart and simultaneously infuriating me every time it happens. I think it was me who suggested you actually wear a button so that people would be curious enough to ask instead of just ASSUMING everything.
    You have NOTHING to apologize for. You have NOTHING to be ashamed of. Who you are and how you process things with or without aspergers will almost certainly get complaints in a fast paced front-line customer service environment.

    I bet if you ask about any single co-worker they’ve all had members complain and they’ve all had rushed moments of reaction that could take back.
    What is says about you is that you constantly try and be better. You’re always seeking ways to improve. You work hard, every day. And all of that along side of who you are (with aspergers). You’re successful and sensitive and loving. It is not your fault that a 20 second interaction is misinterpreted by someone else.

    I love you and your sensitivities and your quirks, they make you, you. My T. I wouldn’t want you to change an iota to please this world. I do however wish along with you that the world could slow down and recognize that everyone has a story and the joy of it all is knowing more about one another.

    xoxo Your Mimi

  • Carla

    Im sharing the hell out of this post…hope thats ok.
    Have you read JOURNAL OF BEST PRACTICES? I recommend that to everyone who has or knows or meets or loves someone with aspergers.
    which is everyone.

    xo

  • it’s tough Tara. some people are never going to fully understand. I think if your employer knows and you could get more comfortable instead of being ashamed it could open doors for you. easier said than done i’m sure. My stepson has PDD-NOS and when we finally got that diagnosis EVERYTHING MADE SENSE. We all had counseling to get some tools to live with it and now that we know and we deal and we are open it’s much better. Better for him most of all. He still struggles. He got bullied in school (he’s in a better school now, one for kids with autism/aspergers/pdd-nos and other high-functioning disabilities) . He doesn’t always know how to explain what he’s doing/feeling/meaning. But we love him. And we love you. You have nothing at all to be ashamed of my dear. it’s easy to get fixated on the “bad” or the “wrong”, I know. Try to focus on the good though. I bet if you are open people will accept you with open arms. We all have our thing. You have yours and we wouldn’t want you any other way :)

    xxxxx

  • Jennifer

    Hey T!!!
    i love you just the way you are!!

  • Colleen

    Sending big giant hugs. And I was crying after reading first paragraph. It hurts my heart that people misunderstand others and misjudge them by simply assuming things about them when they first meet them. As a mom who sees this happen daily, it just hurts. I love you, and I hope people realize how special you are, and look beyond first impressions and see the Tara we get to see.

  • I’m sure this wasn’t an easy post to write. Thanks for sharing a little glimpse into your world with us. LOVE you!! xoxo

  • Oh, the deer. I can totally relate. I feel as though I worry about animals so much more than I do people sometimes.

  • I hate that you feel like you have to apologize for who you are. I love you just the way you are, but of course, that’s easy for me to say since I don’t have to live in your head/world and hear/feel how the world’s reaction makes YOU feel. You are wonderful just the way you are, T, and anyone that doesn’t understand…well, they just don’t understand. Doesn’t make them a bad person, necessarily, but my hope and wish for you is that you can find a way to see/love/value yourself because of your inherent self-worth, NOT affected by how others see you. It’s all easier said than done, though! (((hugs)))

  • Hi Tara,
    Great post. My son has autism and I often find myself explaining his behavior to other people. Posts like this one help people to better understand what autism/Asperger’s is like.

    BTW…I’m a Polar Ambassador, too :)

    Hugs,Jenny

  • I have OCD. I totally get the people interaction thing.

  • Jessi

    You know if anyone can Identify and understand what you’re going through its me. Remember I love you always and that you aren’t alone in your feelings. <3

  • KCLAnderson (Karen)

    You are are such a role-model…on so many levels. It’s because of people like you, who are willing to share and be vulnerable and honest, that things change for the better for others. And it’s not fucking easy! So thank you. I am sharing because I know several people who are married to someone with Asbergers or who have children who have it or who work with someone who has it.

  • Just like Meegan said Tara, I think you are so kind and caring. Customer service jobs are HARD with all the constant interaction with different people, I know what I used to go through with just anxiety, which is probably 1/8th or less of what goes through your mind. I had to make the choice to not be in a work environment where I constantly have to be uber polite and “customer is always right” and always feeling and showing my best. I’m in awe that you can do it! I wish I could wear a “be nice I have anxiety” button, but ironically I don’t want to either, because “what will people think about me having anxiety? (<-anxiety response). I also agree with Meegan that perhaps, when you feel you can do it, talk to your coworkers about if they have ever had a customer complain, I bet they have! People complain about customer service all.the.time, because people are very entitled and judgy when given the opportunity, which is why customer service is so challenging! I have many friends and colleagues on the autism and aspergers spectrum and I think its the "have narrow, sometimes obsessive interests" part, because I most of them are from the local sci-fi convention here in Minnesota every year, lots and lots of geeks! They are "geeked out" about their sci-fi interests and hobbies and can "obsess" aka "get super geeky" over them, but man they make the best CONvergence Sci Fi conference co-volunteers, fans and friends!! :)

  • Thank you for writing this. First of all, like Mimi said, you have nothing to be sorry about or to apologize for. If someone has a problem with you being you, that’s THEIR problem, not yours. I wish I could have you come to my school and talk to my teachers. It would help them understand the students they are working with on a daily basis so much better than any education I could give.

  • I love you so very much. And I’m sorry you feel like you have to say you are sorry because you have nothing to be sorry for! AND: until you posted about this (I think you did once before) I had no idea! and just thought you were one of the most wonderful and lovable people I had ever met. So there.

  • What an incredible post…..anyone who knows you either from reading here what you write from the heart, or who is blessed enough to have met you in person loves you for you, Don’t apologize for it….it’s all part of you.

    My only thought is that the “I’m sorries” make you Canadian….eh?

    Hugs my friend!

  • You know I have mad love for you T.
    In all honesty, every time you’ve shared your experiences as someone living with Asperger’s I struggle to see these symptoms you deal with on a daily basis. Even after being aware of them, I still don’t recognize them when I interact with you. While I know they consume you at times and maybe even make you feel less than, please know that they have never impeded my willingness nor ability to connect with you. For me, they truly are non-existent and a non-issue.

    You are so loved.

    *smooches*

  • Candace

    Hi Tara,
    I can relate to this post. I don’t know whether I have Aspergers, but I have very poor eye contact and people don’t seem to like me much. I think I come off as a know it all, but I don’t mean to. I just have a hard time pretending I don’t know something about a topic (I read a lot). I’ve kind of given up on social interactions, and I just avoid them.

    I can also relate to the extreme empathy for animals! That’s supposedly a pathology of some kind, but if it is, I wish more people had it! I enjoy your blog. I think we all struggle with internal conflicts, and hearing someone else talk about theirs makes us feel a little less bonkers. Thanks!
    Candace

  • Ann

    Since you’ve posted this blog, I’ve thought about it often and wanted to reach out and show my support. With most of your blog posts, T, they are so touching and leave me thinking about my own life and how I treat and interact with other people. I don’t have the right words to say most of the time. Just know – you are loved, you are supported, and you are wonderful. <3

  • This couldn’t have been easy to write, but thank you for sharing!

    I have a friend with asperger’s. She’s quirky, and needs to do things at her own speed, and is sometimes unnecessarily hurtful. That being said, she can also be relied upon to always give her honest opinion, she is very loyal to those she loves, and she follows her passions to an extent which most people envy. And even in the situations where, due to her lack of filter, she goes too far and says hurtful things, she always sincerely apologizes when it is brought to her attention.

    Yes, people with asperger’s are notably different socially than those without asperger’s – but different does not mean worse. I wish you the best!

  • Elizabeth

    Tara, as a mom of a teen with Asperger’s, I have to say THANK YOU for trying to give the world a look inside your mind. My daughter still surprises me sometimes with unexpected reactions and behaviors, but I can tell when she’s overstimulated and taking in “too much” of the world around her. And only recently have I learned that individuals with Asperger’s are actually very sensitive, and that what seems like emotional distance can be a defense against feeling things too deeply.

    I worry about her out in the world – she’s graduating from high school next year. I don’t know how or if she can manage independence at times, and I know that there’s a limited understanding (and a lot of misinformation) about Asperger’s and autism. I pray that she’s able to remain true to herself, and that she finds understanding friends and employers along the way. Thanks, again, Tara, and keep on doing those things that make you happy!

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