Insight into Aspergers


I want to share something personal with you, as I have now been blogging for a little while.


Differently wired


Two years ago, I had an amazing experience. I was diagnosed with Aspergers Syndrome which is one stop on the Autism Spectrum. This finally explained the many unexplained challenges I have faced all my life.
But over the last two years, whenever I mention my diagnosis to others who have known me for a while, their response is...I would never have guessed. Maybe you can be a little intense, but that's all!
And when I mention some of the symptoms I deal with day to day, they often say...oh that's normal, everyone feels like that sometimes.
So does this make me feel good? No! It seems to negate all the difficulties I have. I feel like an idiot because I can't control something that others can easily cope with.

Having thought this over, I think the truth is that we older women Aspies have managed to learn to copy others so well, we can camouflage our symptoms, so we just seem a little quirky. Often we are paddling like mad underneath, trying to just stay abreast of the world. 

I also think our symptoms lead out from normal symptoms on a continuum. They are just extreme versions of normality. E.g. Everyone finds the supermarket difficult, and they want to scream by the end of shopping...but not everyone has to block their ears to keep out the incessant music and announcements and people's conversations so they can remember what they were supposed to be buying. Not everyone's brain is so overwhelmed by the visual cacophony on display that they phase out or burst into tears. 

When people make these supposedly supportive comments we often feel negated and dumb and belittled.
I suppose I should see it as a compliment that others don't notice my struggles. But it often just feels like they are calling me a liar, someone trying for attention.

The other tricky thing for me is knowing when to disclose my diagnosis to others. Will they think I'm retarded, will they take me seriously, will it help in any way?

Some of the difficulties I have involve being sensorily overloaded, so I end up tensing to ward off whatever I am dealing with. Often I end up exhausted by the end of the day, due to my bodily tension. 
This means I find it hard to commit to things, as I won't know until the day whether I will have the resources to do it. 
I have to prioritise my family so they get the best of me, and then one or two extras like helping with craft group at school, and teaching singing from home. Then anything else like catching up with friends, helping further at school, or helping out with voluntary organisations I'm involved with, have to wait for the energy resources. And I certainly can't hold down a full time or even part time job.

It's hard to know when to tell people, sorry I can't help out, not because I'm lazy, just because I have an invisible disability. I don't want to seem like a drama queen!

I tiptoe along a tightrope of commitment, constantly making decisions about my ability to cope. 
If I make the wrong call, I tip to one side madly scrambling to gain equilibrium. Commit to too many tasks, and I could end up a day later flat on my back with neck and headaches and feeling nauseous. 
Or I could be so jumpy, with my senses so stretched, that all the sounds in the world seem suddenly amplified. 
All my tasks seem impossible to organise and with my brain reeling and feeling out of control, all I can do is scream at it all. 
It is often only then that I notice what is happening, due to habitually living in a minefield. 
I only notice how rabid I've become when I hear myself shouting, and so I shut myself away in my room under my weighted blanket and pray I've done no lasting damage to my family.

I don't want to end on a negative note. There are many positive things in my life and I don't think I would be nearly as competent or enriched if I didn't have my Aspie focus (obsession)! 
I have music with the piano and singing because I used to disappear into these worlds to escape. 
I am competent at many art and craft practices because my attention to detail assists me. 
My senses which are so finely tuned bring me many beautiful moments which I can share ...hence BeautyScope :-)

6 comments:

  1. Hi. I just found you from your comment left on Desiree's blog. I understand what you are going through as I too live with an invisible disability and get similar comments from people. I have a chronic illness called Myalgic Encephalomyeslitis. It has many symptoms and consequences but the most impactful one is profound exhaustion, mental and physical. Of course everyone has experienced feeling tired, even exhausted so I get a similar response to what you hear, in that people say oh me too. I think in part this is because people do try to relate to each other. We connect through shared experiences and we bond this way. For instance, I am doing it now. I'm saying to you oh me too. LOL

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    1. Thanks for your reply. You live in one of my favourite parts of the world. I have relatives there, and we lived in Vancouver for three years. had a squiz at your blog.Will enjoy going back and like a new favourite author, devouring all the back posts! Nice to know we are not alone in our day to day energy juggle. All the best with yours :-)

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  2. Great summary "differently wired" one. Thanks for prioritising the family - and trying to not burn too fast while burning brightly!

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  3. One of your other arts is expressing a picture of your world. Thank you for sharing yourself with us. You make the world a richer place.xxxx D&M

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  4. My dear, I have only now read this (though I read other posts where you talk about this subject). I have many thoughts... One of them is of course... "me too" :)) I sometimes think that, if I ever go to doctors, they would find a dozen things which are "wrong" with me. I choose not to. But I very often feel like the one in a room who not just sees a white grand piano, but plays it... while the rest of the room can't understand what piano I am talking about. I choose to see all my werdnesses as my great gifts. I am also "a little intense", I can be. And when I felt completely overwhelmed, so it happened, all but my own family ignored every sign of my misery... because of course, everyone feels tired and overwhelmed sometimes... but it all is the matter of degree. That was the choice they made, one by one. So I think I can relate a little to what you experience.

    I also think you made a wise choice to make your family a priority! Very wise! I can sense that your family loves you unconditionally. In ideal world, that's the way we all could love each other... but so far, only a few people really get it.

    I want to offer you hugs. I often wonder with who of my blogger friends I would hit it off if we ever meet. I think you and I would have a good chance. We are not identical, but we are genuine and honest, and creative.

    Other thoughts... you helped me to see some people that I knew in a more compassionate way. Who knows what each of us struggles with? I think compassion, acts of kindness, genuine love are the only things which make everything better. Sending you love xxxx

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  5. Well, well, now I see. We do have quite a bit in common. I'm so happy to know more about you and to consider you a friend.

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If a topic has special significance for you, or touches you in some way, I'd love to hear your story! I will return the favour and we will gently touch hands across the miles...or kilometres :-)