Monday, January 18, 2010

The Outing of A Gal with Asperger's Syndrome - What Did I Do?

Welcome to the second post of my Aspierations blog! 

I'm going to let you in on a secret.  I'd been wanting to make my first post for months but I was too anxious, too scared.  The fact of the matter is that this is the first time I am officially outing myself as a person with Asperger's Syndrome.

Am I ashamed of having AS?  No.  BUT, I'm not exactly sure how to deal with the potential response from family, old friends, business customers and aquaintances who might happen across this blog.  It's one thing writing to people I have never met.  That's a heck of a lot easier than pouring out my heart, baring my soul, allowing myself to be vulnerable and realizing that someone I actually "know" is possibly going to read this.  I don't have the best social skills, after all....

You see, I'm 42 years old and I've been living with the mask of a neurotypical (NT) my whole life.  That doesn't mean I ever felt like I "fit in" but it means my life history is a culmination of experiences where I often found myself "acting", following memorized social scripts and trying to assimilate into a world where I often felt like I was an outsider.  Being high functioning academically and having an entrepreuneurial spirit, I was blessed with a skill set that allowed me to found my own business. 

Workwise, that is where I am at today, working from home full-time running an online collectibles business called Count Your Beans Dolls and Bears (check my business blog) with my husband and raising our two children.  It's a good thing too because although I found traditionally defined "success" in the corporate world of the Silicon Valley, that lifestyle and culture was just NOT for me. 

Most people who see me will probably have no clue I'm an Aspie, unless they are possibly on the spectrum as well.  For most of my life, I think I did a pretty good job of appearing to "fit in"on the surface.

Maybe people who know me can shed some light.  Did my plain hamburgers and picky eating tip you off or was it my "unique" sense of fashion?  Was it the fact I always felt more comfortable with guys than gals?  Was it that I could memorize facts with ease but could never keep my desk and room organized? My interest in numbers, patterns, statistics and individual sports?  My clumsiness and awkward social graces? Or was it the fact that I was a quirky goofball with an odd sense of humor?  Feel free to comment in the comments section if you want.  I'm able to laugh about it... well, most of it.  Some of those 80s outfits I wore were just atrocious.

I'm sure there will be family and people who grew up with me, bowled with me, worked with me, perhaps even dated me that are never going to believe that I am on that wonderful and amazing entity called the Autism Spectrum.  Once they read more about it, they'll realize that not only am I a shining spectrum member but some of their teachers, friends, co-workers and perhaps family members are too! 

When I grew up, Asperger's had not yet been defined.  When we heard in the schoolyard that someone was autistic, it was someone whose characteristics were more prominently defined.  Think "Rainman"... Of course this is not how it is defined today but that was an earlier stereotype.

I was a tomboy and hung out with the boys during a lot of grade school.  I had a few girl friends in elementary school but a couple moved away and I didn't know how to keep the others once I got into junior high.   As I got older, I got involved in acting and other creative pursuits.  I was athletic and I bowled, played tennis and liked individual sports.  I lived in the Silicon Valley of California and was totally into computers and video games too.  (Shocker, I'm sure...)  In retrospect, I realize that a number of the people that I assimilated towards in friendship as I got older are quite possibly somewhere on the spectrum themselves.  When you hang out with people that are kind of quirky too, your idiosyncrasies become a lot more "normal". 

At any rate, I didn't fully realize I was an Aspie until just last year when I attended the Autism Society of America conference with my husband, John, my oldest son, Justin (10) and my youngest son, Ryan (3).  Of course in the 100s of hours of googling and reading research about autism since our kiddos were diagnosed with Asperger's Syndrome and Autism Spectrum Disorder respectively, I had a pretty darn strong suspicion I had Asperger's Syndrome as well.  I just had not processed, accepted and embraced it.  I was not ready at that point to be who I was or let my light shine.

Today I am taking that next step on the journey.  Although I was not a particularly religious person growing up and didn't attend a particular church, my parents had excellent morals, wonderful and kind spirits and I was brought up believing in and respecting God.

It was after I attended the Autism Society of America conference last July that I felt what I can only describe as a "calling" from God.  For perhaps the first time in my life, I felt that I was being directed to something bigger and better and that vision was Aspierations -- Come As You Are, Let Your Light Shine.  I want to help empower those on the spectrum and those who care for and love them.  I want to make a difference in this world.  When I was attending seminars at the ASA conference, it hit me hard that there were not a lot of adult females that were speaking publicly about their lives on the spectrum. As such, there were probably many more women out there living undiagnosed and wondering how to make sense of their lives.

I hope to be one more voice... a candid and encouraging one, a humorous and fallible one, an honest and inspiring one.  Although this post is probably more serious in tone than my normal writings, I tend to try and use humor and compassion when sharing anecdotes and reflections on life. 

Thank you for reading this!  I'll try not to make all my posts so lengthy.  It's something I always need to work on.  As my Dad would always say when opening up my holiday cards to him and seeing my handwritten sentiments, "what are you trying to do, write a book?"  Well maybe that too!

If you'd like to follow me, I invite you to do so!  Feel free to comment too. I'll try not to take it too personally!

Karen

12 comments:

  1. I commend you on your courage to speak out and wish you the best with your blog.

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  2. Very interesting... I can relate to a lot of what you said about growing up. Sometimes I have wondered if there is a little touch of the spectrum in me too (and some other family members too) although certainly not to the extent that my boys have. I appreciate your willingness to share your story, and your positive attitude :).

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  3. Dear Karen,
    I'am the mother of an Aspie boy, who is now almost 16. Once, a doctor told me that most of the times one of the parents have AS too. Or someone very close. When I think about that, I can find a lot of "coincidences" in me, my husbund or even my brother. I dont't know if I'm an aspie, but I can believe that there are some points of contact. Anyway, I've learned how to overcome some difficulties (mainly social) and I can say I'm happy! That's what I try to help my son to achieve: the capacity to face problems and to be determined to overcome them. Always! Each victory must be celebrated.
    Thank you very much for sharing your experience. I'll be back :o)

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  4. Thank you so very much for your comments! It really means a lot to me to know that my words are being read. It inspires me to continue sharing and getting to know other Aspierations friends such as yourselves! :-)

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  5. hi karen, I am a mother of a aspie son who is 13, and was diagnosed this year in may. I have quit full time work to homeschool him and spend more time with him. I believe that I am also aspie but not offically diagnosed.

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  6. Hello!
    Thanks so much for stopping by my blog. I remember what it feels like to have our sons freshly diagnosed. (It was a little over 2 years ago for both.)

    Coming to terms with my own Aspieness took a little bit more time and then it hit me like a ton of bricks!

    I was inspired to find a lot of great resources for women on the autism spectrum. If you haven't yet visited the Autism Women's Network, they have a lot of great information there.

    http://autismwomensnetwork.org/

    If you are on Facebook, there are also a variety of Facebook groups that can be enlightening and empowering.

    I wish you the very best in homeschooling your son, learning more about him and about yourself. It is certainly a journey filled with a lot of winding paths.

    I have found although there are certainly challenges of knowing that I am an Aspie too (like disclosing my two sons' diagnosis to teachers but not feeling ready to let them know I'm on the spectrum too), I find that the freedom that comes from finally being able to start getting who I am, why I did certain things growing up and why I do certain things now is very liberating. Scary at times, but at least I now have something I can deal with.

    If you haven't taken the Aspie Quiz online, you might want to check it out. There is a link on my blog. It isn't an official diagnostic tool but if you do eventually seek a diagnosis and you have taken that test with results indicating Aspie, you might want to bring it along. Women Aspies are a lot different presenting than men.

    Wishing you the very best!
    Karen

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  7. I have been searching for other mom's on the spectrum! I have not been officially diagnosed but I definitely have traits that I cannot deny. :-) I am so happy to have found you. I look forward to ready your blog.

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  8. Hi Angel!
    It's so nice to know another mom on the spectrum has found Aspierations! Aspiegirl power! :-)

    It's great having you here. If you ever have any questions, just let me know and I'll do my best to answer.

    I write about a lot of different topics and try to create a balance of serious, heavy, deep and real stuff, funny anecdotal stuff, whimsical stuff and whatever hits me at the time I'm writing.

    If there is anything in particular you want to read about, there is a search bar on the side as well as a short list of popular Aspierations posts and also a labels section with links to different topics.

    If you haven't done so already, there is also a great site called the Autism Women's Network at:
    http://autismwomensnetwork.org/

    I have found a lot of Aspie women there as well, some of them Moms like us! :-)

    Thanks again for stopping by! Hope to see you here again!

    Karen

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  9. Hello SFlorman!

    Welcome to Aspierations! :-) Glad to have you here and I hope you'll be checking back and posting again soon!

    Karen

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  10. Thank you for finding the courage to "out" yourself. It's funny you use that term because I think of it in terms of coming out of the closet and relating to being gay but now that I think of it more, it fits for anyone who is hiding behind differences that they may know about but be afraid to admit to. Karen, I knew you in some classes growing up and I won't say here who I am but you always had a smile for everyone and I don't know how to say it but an air of innocence and sweetness. I know you were wickedly smart and played sports too. I would not have thought of that as possibly being autism but I know now there is so much more behind it all. My sister's son and daughter are both autistic and they are so different and yet in odd ways the same. The daughter who is 12 reminds me of how I remember you. We (you and I) may not be close and I wish when I was back in school I had gotten to know you better. Good luck in all you do.

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  11. Hello Anonymous,
    I too usually associate "outing" with a gay person who comes out to their family and friends. Interestingly enough, while in my teen and early adult years, I was friends with a lot of people who happened to be gay. We didn't usually talk about that (some I know never officially "came out" to me), we were just friends and we were accepting of each other. I was friends with many before I think they may have even realized they were gay. Certainly I did not realize I was an Aspie growing up because that term wasn't around then.

    I'm not sure how "close" you and I were but I truly appreciate you coming to my blog and posting your thoughts and compliments. Feel free if you're comfortable at any point in time to look me up on Facebook (if we're not friends there already) and I'd be happy to connect / reconnect!

    Best wishes in all you do and may your sister and her family find hope and strength in their journey too!

    Karen

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