Finding Ourselves on the Autism Spectrum

I want to thank everyone so much for the extraordinarily warm welcome I received yesterday upon starting my little blog.  I was all set to run and hide like a scared rabbit, because I’m overly sensitive to criticism and rejection, but you made me feel interesting and accepted.  It really makes me want to write more. Part of me is still a bit nervous, though, and I’ll tell you why.

(Inserting disclaimer here: In real life I’m usually much less serious than I am finding myself here as I write this.  Humor is the main coping mechanism for most of life in our family, but for now I seem to be working through some things.  Please bear with me. )

To be honest, a part of me is wondering just how far this acceptance will go and how long it will last if I keep sharing what’s going on in my head.  I’ve developed this concept of myself as someone people only like as long as they don’t look too closely, and as long as I keep up appearances.  I’ve gotten better over the years at knowing the standard things people find acceptable for me to say.  It goes along well enough for a while.  Then I gain more confidence, start to relax more and filter myself less, and somewhere along the line the atmosphere in the room changes or someone makes a comment, and I realize again that I really am some sort of other and not part of the group at all.  At least that’s how it seems to me.

I’ve been getting a different reception here, and I enjoy so much exchanging ideas with people who have their own perspectives on things that matter to me.  It’s such a breath of fresh air, and I keep wanting more.

The relationships I have with people in my daily life mostly seem to revolve around whatever it is that we have in common.  I guess that’s normal enough. Usually it’s kids.  Occasionally a hobby or pet or a common life experience.  And there’s Facebook, where I can momentarily connect over a difficult or amusing moment in my day or someone else’s, and then we drop right back out of each other’s lives again. 

I actually do enjoy being in touch with more people this way than I would otherwise.  I can’t manage long phone conversations or evenings out very often, so it’s a way to keep up on what people are doing and to share what I’m doing without having to have dozens of separate conversations.  I also sometimes enjoy the brief exchanges I have with other parents on the school playground or at the door at the beginning or end of a playdate, although that tends more to be  if I’m having a good day.   Still, it’s all very limited involvement and within pretty “safe” subject areas. 

Once in a while there will be a longer conversation while the kids play in the neighborhood pool, or when we lose track of time waiting for them to finish some activity they are doing together.  It seems like those longer conversations mostly happen with parents who have at least one child with special needs.  Even if the issues are different, we can talk about something real and meaningful to us, and we can share at least some of those moments that other parents aren’t likely to experience or understand.  Plenty of people in my neighborhood or on my friends list will be happy to listen to a story about my car troubles or my kids’ last visit to the dentist.   They just don’t know what to do with a story about my teenager having an anxiety attack that takes up my whole afternoon or not being able to get himself dressed in the morning because he can’t stop staring into space long enough to put something on. 

I’ve had one good friend for most of my life who loves to bounce ideas back and forth with me , and I treasure that relationship.   We can talk about spiritual things and practical things and even autism things, because she has spent much of her career as an exceptionally insightful special ed teacher.  This friend is actually the one I credit with taking me under her wing and helping me to fit in and find friendships as a lost adolescent Aspie girl.  She has always thought I’m funny and interesting and unique in a really positive way, and she’s never asked for more than I have to give.

I told this friend pretty recently about my deciding that I am on the spectrum, and she responded with love and respect for my feelings.  There was also a certain amount of disbelief that I could in any way have something that’s considered a disability.   To her, I’m wonderful just as I am, and I truly love her for that.  At the same time, it helped me to realize that much of my life experience has really been kept all to myself.  Over at Life in the House that Asperger Built there’s a discussion going on about challenges and  limitations, and I especially relate to a comment passed along from a friend of hers by Rachel Cohen-Rottenberg about having to “pedal harder than other people just to get to the same place”. (Thanks, Rachel).  Because I end up looking like I’m doing OK – at least for the periods in which I am out “performing” – nobody gets to see how much effort it took to get me there or the limit on how long I can stay before turning back into a pumpkin.

It’s hard to share with people things about myself that I know they just don’t feel.  Come to think of it, I’m not exactly sure why that is.  I suppose it just emphasizes to me how different I am.  Even if they are being kind, I feel self-conscious.  It’s so unburdening to be able to say that I’m depressed or anxious or I just can’t think right now because the TV is too loud or the kids are all talking at once or I just need to be away from people for a while and to have that be OK and not something anyone feels a need to worry about or to try and fix for me. 

I’m not looking for anyone to pity me.   If you look closely enough, everybody has their challenges – some that truly make me wonder how people even manage to get up in the morning –  and I wouldn’t trade mine for someone else’s.  I would just like to be able to say how I’m feeling and what I need to do to accomodate that and to have that be accepted without anyone telling me how I could change things or make things better.  A need to fix something would imply that I’m a broken version of a “normal” person.  I’m a perfectly fine version of me, and I’m really enjoying getting to know more of the fascinating people in this corner of the blog world. 

This is one of my favorite concepts from old school Star Trek:  IDIC – Infinite Diversity in Infinite Combination.  Who wants for us to all be the same, anyway?

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Comments on: "Different kinds of friendship" (30)

  1. Hello Diane,
    What a wonderful post, I am so glad you made the brave decision to step out in faith and share your life and all you’ve been through.
    I started my blog by complete accident. I came onto wordpress to look at some art by an internet friend I had met on care2. I am dyslexic and didn’t follow the instruction properly and my blog began.
    It was TOTALLY GOD!!!
    Having my blog has changed my life, as I have shared I have changed. I have learnt so much from reading other blogs and the friendships have been so encouraging.
    Just keep being yourself, write your blog for you.
    Who you are is amazing, there is only one of you so just keep being you.
    I had spent my whole life being quiet, polite and unnoticed. Imitating people to make them like me…it made me so very miserable.
    Now I am seeking out my Shirley….it’s a poem I wrote, I refer to my Shirley quite a lot. giggle
    She is the person I might have been if the world hadn’t shut me in a box and told me I was wrong.
    Love and hugs.
    Lisa. xx 🙂

    • Lisa, I so love the story of how you started your blog! That’s beautiful sign of divine intervention. I always feel so connected to my Source when something happens like that.

      I read your Shirley poem and think it’s wonderful. You are a kindred spirit, and you truly inspire me. Now to see if I can relax and lighten up a little for a bit 🙂

      Thanks so much for your kind comments.

      Love,

      Diane

      • Hello Diane,
        I just got to tell you, I have been writing poetry and painting abstracts for years and never shared them with anyone.
        I left my first attempt at blogging on my blog to remind myself of how I first started. Even the meeting of the artist who brought me here was so planned by God.
        Her art spoke to me and really touched me so when she left care2 I just had to follow her. She had told me I needed to blog but I didn’t think I had anything worth blogging.
        She is a very spiritual lady and I believe that God used her to start a healing process in me.
        Love and hugs.
        Lisa. xx 🙂

      • I’ve been meaning to say, you’re a very spiritual lady, too, and I’m blessed to have you as part of my healing process.

  2. Lisa and Diane,
    I think we would not have all of the wonderful poems, literature, classical music, etc. if it were not for wonderful aspies like the two of you. Please keep sharing!
    Aloha,
    Sue

  3. Hello Diane,
    I have read your posts and had the same feeling I have had on other Aspie blogs – namely that I was reading about my own life! It is amazing how similar we all are. And here we were feeling alone and isolated and not understood and then suddenly this wonderful world of understanding opens up. Apie Bloggyland is a lovely place!
    Bruce 🙂

    • Hi, Bruce.

      I’m so glad to have met you and to be able to share the things we have in common. This is a lovely place.

      Diane

  4. I lit up at your last sentences; Kathleen and I started a blog in Dec 09 called Respect for Infinite Diversity (based on the IDIC); it was the precursor to our blog directory. Star Trek reigns supreme in my house!

    I can’t promise trolls won’t find you in your blogging journey, but if you can’t be free to be yourself on a blog where you are relatively anonymous, what’s the point? You delete the trolls if they find their way to you.

    Not everyone will like you, but those who do will like you for who you are and that’s a pretty damned awesome feeling to know you have been seen for who you are and embraced.

    • So great to meet another Star Trek fan (Here we call ourselves Star Trek geeks, but we mean it in a nice way. Just me and hubby for now – haven’t managed to get the kids on board yet, but we keep trying 🙂

      Thanks so much for the advice and encouragement. It really is amazing to be able to open up and have people respond in such a positive way.

      I’m glad you and Laura mentioned trolls so I don’t get too surprised of that happens. Today my blog started automatically approving comments without asking me to moderate first like it was before, so I’m not sure what’s up with that, but I suppose I can always delete things after the fact. As long as I know the friendly folks I’ve already met are here, I can get over whatever else comes along.

      Live long and prosper.

      • We’ve combined geeks and nerds into one word: neeks or gerds, depending on our mood, and we absolutely embrace it! 🙂 We’re currently on season 2 of classic Star Trek with the kids, midway through season 2 of TNG, and a few episodes each of DS9 and Voyager. Lil’s begun reading my Star Trek books, a proud day for me when that happened. Oh, and when we do put up a Xmas tree, it’s a star trek tree!

      • That’s fantastic! I’d love to see your tree. I just came across a whole box of Star Trek novels a few months ago when I was moving things around in our basement. I had thought they must be gone, so I was very happy.

        I got my older ones to watch Trouble with Tribbles, because they both have such a great sense of humor, and they seemed to like the newest movie. Nobody was clamoring for more episodes, though. Aspie guy is fairly picky about his viewing, so you have to catch him in the right mood. If he finds anything uncomfortably silly or starts to feel embarrassed at what he’s watching or what a character is experiencing, he’ll get right up and walk out of the room. If it gets creepy, he’ll stay but be bothered by it later. Our middle son will get interested in almost anything we choose to watch with him around and seems to like most of the same things we do, but the youngest gets scared or creeped out by almost anything that isn’t warm and fluffy, unless it involves people trying to do silly stunts. Real people getting hurt he’s fine with 🙂

        So are you all about the Star Trek, or do you embrace other universes, too?

        I’ve just been over to Respect for Infinite Diversity, BTW. Yet another blog I know I’m going to have to read more, but it just looks so good to me. I so need more time in my day 🙂

      • Diane,

        There’s a picture of it at http://kwomblescountering.blogspot.com/2010/11/william-shatner-rules-at-our-house.html.

        Oh, we’re huge scifi fans and embrace almost all of it: Battlestar Galactica, Caprica, Farscape, Firefly, all the stargates. Hee, and of course, we collect the action figures! And any books, too. 🙂

        Thanks; we’re proud of the work we started at Respect for Infinite Diversity; since we started the directory, we post to the directory instead of RFID.

        I know, not enough time in the day! It’s one of my favorite things, to know that I’ll never run out of things to do, to read, to learn.

      • Your tree is awesome! I would have loved to grow up in your house !

        I was completely hooked on Star Trek as a kid, and my brother and I could quote the alien dialogue from the Star Wars movies. My husband and I met as fellow geeks in college. We lived in the honors dorm that year, and pretty much every guy I knew was an engineer and into science fiction. Our group watched Next Generations together as they came out and frequently quoted classic Star Trek. His roomate first introduced me to Doctor Who, and another friend got us started watching Babylon 5. We watched all of BSG and probably half of the Farscape that we have. Firefly is a big favorite of mine, and I hated to see it end, but I loved what they did with Serenity. We’ve seen all the Stargates, and I’m really enjoying Universe. There’s not enough time in the day for all this, either 🙂

      • Nope, never enough time in the day. I liked how they handled Serenity as well. And it’s been fun to see the actors from the show move on to other projects. I love Universe; really disappointed that this is going to be it’s last season. I hope they’ll be able to wrap it up effectively.

        It’s always nice to find other scifi geeks! 🙂

  5. It sounds like you are on the right track and you have the right idea not to judge yourself from someone else’s perspective. It’s your own perception of yourself that is the most important. However I know what it feels like to want your friends to understand and accept aspergers and to not discount your ability to recognize and develop your own identity. I might not “look” disabled to the people around me, but from my perspective (not being able to talk easily, constant anxiety, literalism, etc.) I am.

    • Hi, Jess. I’m glad you stopped in to comment. It seems like you understand where I’m coming from and what it feels like to have difficulties that no one can see. It’s a challenge to value your own view of yourself over someone else’s, but I hope meeting the challenge when we’re able helps to build strength, too. Thanks for sharing your thoughts.

  6. Diane,

    Thank you for sharing. I relate to your post so much.

    Being able to find a place to share our thoughts and feelings is so healing and liberating. I encourage you to keep stepping out and sharing even on those days that seem a bit harder. You have much to contribute!

    The more we share the more we see that there are others who do truly understand. 🙂

    • Thanks so much, Angel. I truly appreciate all the encouragement. This is a wonderful experience for me. I’ve just been over to read some of your posts, and I’m looking forward to reading more. I can’t think where I’ll find the time to do half the readingand writing that I want to do. It’s so great being welcomed into this community.

  7. Wonderful post! Like Bruce, I felt as though you were describing me. Specifically, the paragraph that begins “To be honest…” I could have written that word for word. My experience has been 6 months of acceptance and only 1 troll whom I told off and she never came back. 🙂

    I’m glad you’ve decided to open up. Thanks again.

    • Thanks so much for the compliment. Ever since I started reading your blog I felt we had a lot in common. I’m glad your blogging experience has been so positive, and I’m glad you write often so that I always have something new to look forward to. I don’t know how I’ll find the time to read and write all that I want to, but I’m so enjoying my time here.

  8. Diane,

    I agree with your comment on Laura’s blog that we seem to have so much more in common than we even realize. And I am so glad you are writing.

    I can so relate to wondering how far the acceptance will go. What if I disagree with someone’s opinion about something or step on someone’s toes? What if the traits that seem to me to be Asperger-like aren’t Aspie enough? What if what I write about no longer seems interesting to anyone else?

    The title of your blog, Don’t Panic, is actually a good reminder for me. Right now, this all feels a bit too good to be true, but I think that feeling is really just the sense of amazement that there are people who think like I do and who don’t need me to change how I think to make it fit in a familiar package.

    Best wishes,
    AM

    P.S. You can check your comments settings in the blog admin area. It might be that you have it set to only stop comments the first time a person leaves one or perhaps only if they include a link in their comment. There are several different options you can choose for moderation of comments – let me know if you need help with it.

    • So great to hear back from you. I’m glad we can share our concerns and realize we aren’t alone.

      BTW, I think I may actually need some more specific help with the comments thing. I do better with step by step instructions 🙂 When you say “blog admin” is that under “manage comments” itself, or somewhere else? I’m probably being dense, but I seriously can’t find where to change the setting on any of the mnues I’m hunting around. It’s nicer for me to have a section that’s just for “pending” so I can respond as I read and not wonder if I’m missing anybody.

    • I think I just found it. Now I have to wait for someone to comment to see if it worked. I looked in the “Help” section. Go figure. I’m surrounded by guys who never use “help” or directions to figure out anything, so it takes a while for it to occur to me to try that 🙂

    • Yay! It worked. You learn something new every day.

      • That’s great! I didn’t get a chance to respond earlier, so I’m glad you found what you needed. By the way, I am always happy to help if I can.

      • Thanks. I think knowing you were available to help helped me to let go of the issue in my mind for a moment and be able to see what was right in front of me. It also helped to get a few other things handled in my day to clear my mental desktop a bit. Most times whenever anyone in our house loses something, we find that the object wasn’t actually far out of view, if at all. The person missing it just can’t see clearly when they are stressed. So before looking for anything, I encourage everybody to take a moment and relax. Also, I use this opportunity to get them to clean some things up 🙂 Even if we don’t find what’s missing right away, we always find something.

  9. Diane, I wouldn’t worry too much about your comment settings at present as you always have the option to change them later if necessary.
    Don’t worry that all this bloggy love will disappear if you say the ‘wrong’ thing. When you read someone’s blog you get a word picture of who they are, what they stand for and what is important to them. These impressions are what keep people coming back to read more. I doubt if you will say anything to offend or alienate your readers! Remember, we like diversity!!
    BTW, thanks for leaving a comment for me 🙂

    • Thanks very much for the advice. I’m feeling better and better as time goes on, but it helps to get my concerns “out there” so they aren’t running around unchallenged making problems in my head.

      I’m not so much worried about the comment setting as just still trying to figure things out. I’m a bit illiterate when it comes to technical things. I don’t want to say “challenged” because I do just fine when someone actually shows me how to do something. I just don’t have that ability to work it all out on my own.

      I’m glad you like diversity. I wish more people did. Nice hearing from you.

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