Finding Ourselves on the Autism Spectrum

Aspergirl?

After years of working to help my Aspie son, I have decided, in the phrasing that my husband has adopted, that I am “dealing with” Asperger’s Syndrome myself. No official diagnosis – just my fairly well-informed opinion. I have a teenage boy on the spectrum, the ways that he and I differ made me think for a long while that I must just have shadow symptoms of autism, like many family members, or be trying too hard to identify with the boy I love so much. The main difference between us is that he’s mostly an open book. More like a radio station continuously broadcasting whatever he’s thinking and feeling, often at an uncomfortably high volume to everyone within a large radius. I’m quiet. For the most part I’m disguised or hidden away. I’ve developed a whole arsenal of coping strategies that have become so automatic that it’s hard to tell what’s me and what’s not.

This year I met some girls and women with Asperger’s at a parent support group that I attend, and I began reading about females on the spectrum. Out of the scattered pieces of my life a pattern began to emerge. Old memories and more recent experiences started to make sense in this framework. My constant compulsion as a child to be in a rocking chair. A period of unexplained isolation and bullying as a teenager. My extreme academic ability coupled with a general lack of common sense about the world around me. A preference for being in the company of boys rather than girls, because it just seemed easier. Mimicking the behavior and conversation of people around me, because I didn’t know how to generate my own. Approaching problems with my intellect, rather than my emotions – which were usually confusing and difficult to regulate. Pretending my whole life to know things I didn’t actually know, because I always had a sense there were things everyone else knew, and I didn’t. Always feeling when I was young that I must be from someplace else and wanting to know how to return there.

For most of my adult life, I’ve felt a compulsive need to follow rules even when they serve no practical purpose. People often misread my moods and misunderstand my words, even when I think I’m being perfectly clear. I notice myself sometimes feeling more comfortable talking with people for whom English is their second language, because the conversation is more straightforward. I suffer from multiple forms of sensory overload, most notably with sounds. I have tremendous difficulty shifting gears once I’m engaged in an activity or a particular thought process. I get completely lost in whatever is going on in my head and losing track of the world around me for extended periods of time. Despite extreme social anxiety, I can be extremely talkative on some subjects that genuinely interest me and almost unable to generate any conversation at all in the absence of those subjects.

I did make a brief attempt to get a diagnosis a few months back. I couldn’t find a specialist on my insurance plan, so I settled for a well-meaning young mental health professional who at least thought it seemed like a reasonable possibility. However, he was much more interested in discussing my anxiety issues and thought I should come in for therapy. The thing is, I don’t really want therapy, and certainly not from someone who has no idea what it’s like to be an Aspie or a parent of an Aspie.  I don’t especially want to change who I am or to be more like everybody else.  I just want to have a clearer understanding of what makes me tick and why I respond to life the way that I do.  It also helps me to understand what makes my kid tick, and that helps me to be a better parent and a better advocate for him.

My child’s diagnosis isn’t really as official as it could be. He started seeing professionals and receiving various therapies and assistance when he was only a year old, and no one felt a specific label was all that important, because he was clearly somewhere on the spectrum, and because it wouldn’t change the recommendations for what would be helpful or even the availability of the services. When he was in first grade it became necessary to be labelled by the school district in order to receive the help he needed, which was an IEP with accomodations and a full-time paraprofessional. We resisted the label for a long time, because we thought it would make our child stand out more or become a self-fulfilling prophecy, and we didn’t want to limit his potential. The label has actually turned out to provide much more benefit than cost over the long run. With the help that he receives and the increased understanding of the people around him that he’s gotten as a result of having a label, our son has made tremendous progress in all areas of his life.

For me, the help and understanding I didn’t even realize I needed has come in the form of wandering into this community of people who are either on the spectrum themselves, or who love and accept someone who is on the spectrum, or both. I’m so grateful to so many individuals who have been brave enough to share their experiences that let me know I am truly not alone. In that spirit, I recently agreed to be the subject of an interview for a friend’s Aspie daughter who was writing about Aspie females for a school research paper. I found that sharing some of my experiences with her also helped me to clarify my own thoughts.

I’m not sure I want to share this view of myself casually with the world at large, since most people don’t seem to understand much of what it means to be on the autism spectrum unless they are living with it. Even in my son’s case, we are blessed by his ability to function well enough that we can tell people about his ASD when we feel like there’s a reason to do so, and at other times we don’t feel a need to bother.  I do feel like I want to officially introduce myself to the rest of this community.  Hi. I’m Diane, and I’m a self-diagnosed Aspergirl.

 

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Comments on: "Aspergirl?" (21)

  1. This is GREAT! I’m so glad you started blogging. OMG! I’m excited about your experiences, and what I can learn from you.
    (that’s kinda selfish, huh?) OH WELL!!!

    Welcome to the blogosphere!!!!

    • Laura, thank you SO MUCH. I have gotten so much out of our brief exchanges and so much more out of reading you blog, and I love the idea of being able to share more with you and with the other kind and generous people I’ve been meeting in this corner of the blog world. It has meant so much to me reading similar experiences to my own and hearing everyone’s individual thoughts and interpretations, and I just want so much to build on that. If anything I can possibly say now or in the future can be of use to anyone in their own journey, I will consider it a tremendous blessing to me. I’ve had thoughts or experiences some days that I felt just bursting to share either because they meant so much to me or because I just needed to get them out of my head and into the world, and then I realized that no one I knew would probably understand or even be interested. That is, until now 🙂

  2. So glad to see your new blog. I agree with Laura and am excited to read about your experiences as well.

    Welcome!

    Can’t wait to read more from you.

    • Angel, thank you very much. I’m so grateful for all the support and encouragment I’m receiving already. I’m a little overwhelmed. If you are all going to be so kind to me, I suppose I’ll have to do my best to keep writing 🙂

  3. Wonderful post, we seem very alike… It is almost like you have written up parts of my life for me.
    It is so good to have you here.
    {{{hugs}}} xx 🙂

    • My wonderful new friend,

      I think the same thing every time I read one of your posts. I am so glad to be getting to know you 🙂 You are a truly generous soul.

  4. Yay, another one!

    Here’s my experience when it comes to official diagnosis…it may be well worth going off-insurance plan to get it, as indeed I had to since I don’t have any insurance at all. It took me MONTHS to chase down a referral to the child psychiatrist who sub-specializes in adult/late diagnosis who I finally saw, but when I did, just paying his fee for a couple hours of his time was so worth it.

    I love your title; it makes me think of “Hitchhiker’s Guide to the Galaxy.” I made “Don’t panic” my personal motto after I read it in high school. 🙂

    • Hi, and thank you for the diagnosis information. It’s good to hear from someone with personal experience. I’m glad it worked out well for you.

      I’m glad you appreciate the title I used. I still find myself saying “Don’t panic” to myself and my family members on at least a weekly basis – mostly because all of us have an initial tendency to do just that 🙂

  5. 🙂 Great post. One thing several of us moms have noticed is that we have similar personalities and many of the issues our kids have. Emily over at A Life Less Ordinary had a really good thread going two posts ago on women on the spectrum, if you haven’t read it yet.

    Welcome to blogging! Looking forward to getting to know you. 🙂

    • Thanks very much for the compliment and warm welcome. It’s very nice to meet you. And thanks for the thread recommendation. I’ll be sure to check it out.

      Diane

  6. Hello Diane! I’m the NT mother of a teenager with autism and severe learning disabilities, and I love reading blogs by people on the spectrum because I learn so much! I’m looking forward to reading more from you! (Plus, I LOVE ‘Hitchhiker’s Guide to the Galaxy’!!)

    • Hi! I’m so glad you stopped by to say hi. You have all been so supportive. I was just over to visit at your blog, which I look forward to reading more. You have a nice way of expressing yourself. And it’s nice to meet another Hitchhiker’s fan 🙂

  7. Diane,
    I’m so glad you decided to blog, but I have to admit I’m a little jealous already. I’ve been blogging since September and I still have trouble getting people to comment on my blog and here you are with so many comments on your very first blog. Congratulations!

    Hey can you take a look at my blog and offer suggestions? FYI one thing I’ve noticed is that those who share personal stories get more comments, but I’m somewhat limited in what I can share as I don’t want to embarrass my 15 y/o daughter who is still at a very competitive school. That is why my book had to be a work of fiction although our story inspired it.
    Aloha,
    Sue
    dswalkerauthor.com

    • Hi. So nice to meet you. I’ve just been over to your blog and left a comment. You write well, and I think it’s wonderful that you’re protective of your daughter. I’m so new to this. Maybe someone here will have an answer to how you can attract more readers and comments. I’ve added you to my blogroll and look forward to reading more.

      • Diane,
        It is very nice to meet you too! Thank you for your kind comments here and on my blog. I look forward to reading more of your blogs too. I’m adding it to my list.
        Aloha,
        Sue

  8. I love the last line of your post. We can have our own AA – Aspergirls Anonymous. Although… we’ll have to let Bruce and Clay and any of the other guys in as well. And they might not like to be referred to as girls… So never mind, but I loved it anyway!

    (Can you tell I’m a bit loopy right now? I think it’s from staying up way too late the last few days; I don’t usually try to be funny as people don’t often seem to appreciate my sense of humor.)

    • Ooh! Ooh! I know! how ’bout just Aspies Anonymous?!

      Then the guys can join too!!!

      • Yes, I couldn’t join a group without them. I’m the only female in a house of 5 people, so I’m used to plenty of men in my life.

    • Aspergirl Maybe….I have loopy moments too, I don’t know where they come from, I just get so over excited and giggly. I thought it was an Alienhippy thing, perhaps it’s not after all…lol
      Sometimes I don’t even know why I’m laughing at something that no one else seems to find funny.
      Oh well…life is life, I quite like giggling my way through it.
      PERHAPS…..an AA club is needed!!

      • I’m glad you like to laugh so much. It’s a very healing thing. And life can be very silly sometimes, even if not everyone can see it 🙂

    • Well, I find it amusing 🙂 I’m getting a bit loopy myself these days. Still haven’t gotten a handle on how to manage my time tryingto include so many new friends.

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