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.’
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.