What is this Asperger’s?

Those of us who have a family member with Asperger’s, or who work with people who have Asperger’s Syndrome, are relatively familiar with all it entails. I say ‘relatively‘ because there is no clear-cut definition of Asperger’s; nor is there a definitive list of signs, symptoms and behaviours.

 ‘No two people with Asperger’s are exactly the same.’

Asperger's is like a puzzle. Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net
Asperger’s is like a puzzle. Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

This is the statement I remember most when I was about midway through the jungle of testing and interviews that make up getting a diagnosis for Autism Spectrum Disorder.

I cannot remember who said that to me, but never was a truer statement uttered.

Yes, there are similarities, but just because the boy in my class who has Asperger’s exhibits a certain behaviour, doesn’t mean that Geordie will also exhibit the same behaviour. I know that now.

The other thing I know is that just because Geordie is exhibiting a certain behaviour now, doesn’t mean he will still be behaving the same way next year – or even next week. My rule that I now live by is:

                When you think you understand,                                                                                         when you think you know how he will react,                                                                           it will change.

And why not?

People who don’t have Asperger’s all have different personalities and behaviours. People who don’t have Asperger’s have been known to react differently at different times to the same thing; to change the way they do things; and to change the way they behave.

So, what is this Asperger’s?

If you haven’t been touched by Asperger’s in some way, chances are you may have heard of it, but you don’t really know what it means.

The concept of Asperger’s is extremely hard to explain. People’s reactions are varied and don’t always match their perceived knowledge.

Here are a few examples from my experiences:

  • When I was going through the process of having Geordie diagnosed, my Principal (who was known for her passion and knowledge in the area of special needs) cautioned me to think hard about whether or not I wanted Geordie to be labelled. (My response was that I would rather have the label of Asperger’s than the label ‘unsociable, naughty child’.)
  • A previous teacher, who professed to understand how to ‘deal with’ ASD behaviours, frequently referred to Geordie’s jumping and flapping movements (an uncontrollable behaviour, borne out of anxiety in Geordie’s case, and sometimes called stimming) as ‘he won’t stop flapping around’.
  • I often hear colleagues and associates, most of whom don’t know about Geordie’s diagnosis, describe children who are behaving in ways we don’t expect as ‘he’s SO on the spectrum’ or ‘she’s so spectrummy‘.
  • Geordie’s best friend who, despite Geordie’s reluctance to make eye contact, have a conversation or play for the first six months after they met, persevered with developing the friendship because ‘I knew Geordie was going to be fun.’

These people are neither ‘good’ nor ‘bad’. In Geordie’s words, people either ‘get it’ or they don’t. It’s a mere statement of fact without an underlying judgement.

What we have learnt from these experiences is this:

Understanding Asperger’s is hard. We get it.

If you would like a brilliant, inspirational site to go to for more information, try this one by Sue Larkey.

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5 thoughts on “What is this Asperger’s?

  1. I have never had first-hand experience with someone living with Asperger’s Syndrome. Having read your many accounts here Kellie, I certainly have a better understanding at how in-tune people living with it are. Your insights will stand me in good stead to meet someone like Geordie in the future. Thanks and good on you, your family and especially Geordie!

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  2. I enjoyed your blog Kellie. Some books about Asperger’s are hard to read but your story was easy and flowing. I will ‘follow’ your blog. I live in a small town and we have all sorts of people with Asperger’s, autism and so on. I’ve worked beside some of these people and many are lovely. A relative of mine has Asperger’s, he is into music, talking to band members and helping them out. He’s very quiet, always has been since a child. We were waiting on a pizza delivery but I wanted to eat something beforehand, he said ‘You don’t want to ruin your appetite’. From Dianne

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  3. Thanks Dianne. Everyone with Asperger’s/Autism is so different. Your relative has obviously found his ‘niche’ in music; I am waiting for Geordie to find his. What I love most about Asperger’s though is the directness, ie the way your relative got straight to the point about not ruining your appetite. My son’s comments are often similar, said with consideration but completely honest and direct. Thank you for sharing, and for ‘following’.

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  4. Hi Kellie,

    I was really interested in reading your blog posts because I have a friend with twins that have been diagnosed with Asperger’s. I honestly had not heard of it until I met them. In my contact with the twins, I found them so different in their personalities and way of expressing themselves that I couldn’t understand what it meant. From my experience with the twins and other children who have been diagnosed with autism or other I have realised two things: 1. It is more about how the child relates to the world. 2. A friend of mine uses the term ‘spectrum’ often. I always think of the spectrum of colours when she says the word. I feel that in a way, we as a society want to label but I find it hard to. I see that each child relates to the world and expresses in their own way. I don’t think I would make a very good psychological assessor.

    Thanks for sharing your experiences and knowledge as a parent.

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    1. Thank you for your feedback and lovely words Arlene. The more people that ‘get it’ the better. The word ‘spectrum’ is one I deviate on … in one way it is a label, but in another it really does represent autism – because the personalities, behaviours etc are all different, no two people with autism are the same. I like the rainbow association – rainbows are positive and we need to look at autism as being positive and something that makes the person unique in a good way. Thanks again.

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