Asperger’s – a part of who you are

I need more routines

and less surprise

I need more notebooks

to keep track of my thoughts as time flies

 

image courtesy of digitalart at FreeDigitalPhotos.net

These four lines come from brilliant poem by Devereaux Frazier in which this talented young poet captures Asperger’s and portrays it to a tee. You can read the rest of it, and more of Devereaux’s poetry and musings here.

The point of poetry is to evoke emotion and thought processes. The words mean different things to different people; so what I take from Devereaux’s poetry might be totally different to what other people take. That’s the point.

For me, Aspergers Will Always Be By Our Side is a reminder that this is who Geordie is, and we should embrace his personality rather than try to fix it. Some lines ring particularly true:

   ♥ I need more honesty

Geordie has an inbuilt lie detector (or ‘trying to shield you’ detector) — he needs to know the full truth about things that are going on, nice or not. And he can pick a non-genuine person (‘they don’t get me’) a mile off.

   ♥ the world is just too loud

Yes — literally and figuratively. Loud noises are confusing and confronting. Getting in Geordie’s face is never going to win you brownie points.

   ♥ I need more routine; and less surprise

Sameness brings comfort; it’s only when sameness brings boredom that I know we can safely move onto something else. Surprises? Definitely not. The unknown and the unexpected brings nothing but anxiety.

   ♥ we are what we love

Geordie knows himself so well. My greatest pride in him is that he is true to himself and what he wants/needs — without worrying what others will think of him.

If you want some truly deep insights into what it means to have Asperger’s, Devereaux’s poetry can give you just that. But you have to be willing to listen.

Having a child with Asperger’s doesn’t make me all knowledgeable on the subject. I’ve said it many times — what I write on these pages come solely from my own experiences and don’t apply to everyone … or anyone.

I love that there is a growing community out there of people who are sharing their own experiences, and listening to those of others.

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reasons v excuses

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

 

There is one thing I think I have never done when it comes to Geordie’s diagnosis — use it to completely and totally justify his behaviour at all times.

This is the one thing that could be our undoing in the fight for understanding.

The vast majority of the people I know who are on the spectrum, or have children on the spectrum (including those whose brilliant blogs I follow) do not do this. They are fighting for recognition and for understanding about what makes people with Autism/Asperger’s ‘tick’ — they are open and honest; they don’t seek to justify their behaviour or reactions, but to explain them in a way the rest of us ‘neurotypicals’ might be able to understand.

Then there is the very tiny minority who use a diagnosis (or even those who ‘suspect’ a diagnosis) to excuse behaviours, e.g. The child kicks his teacher — immediate response: “Oh, he did it because he has Autism.”

This is not on!

Over the years, Geordie has exhibited a whole range of behaviours — many of which I could have blown off as “it’s because he has Asperger’s”.

Some of his behaviours and reactions have been because he hasn’t been able to process and replicate the ‘social behaviour’ required, or he has gone into overload, or he has been goaded into the behaviour by someone who ‘doesn’t get it’.

These behaviours have been related to the fact he has Asperger’s — but I’ve certainly never left it at that. I see them as calling cards to action: find out why the behaviour happened; work out what we can do to help Geordie react in a more acceptable manner the next time it happens; explain it to people and work with them on it.

But — some of his behaviours are ones he has chosen. He is very clever, and I am under no illusion that sometimes he acts a certain way because he has learned that he may be able to get away with it due of his diagnosis.

The trick is to be able to tell the difference.

I don’t always succeed.

I have totally stuffed up on numerous occasions. The Asperger’s learning curve is not a singular curve, but fraught with many dips, turns and rises. This is not an excuse — I’m working on it and talking about it; this is the difference between an excuse and a reason.

There is a mighty fine line between using Asperger’s as an excuse for behaviour  — and using it as a reason.

The people who use it as an excuse are not helping any of us — not only because they are perpetuating the myth of  ‘we don’t have to comply because we have special needs’, but they are also not doing any favours to the child who is then denied the opportunity to learn and develop.

People who use a diagnosis as an excuse are also greatly assisting the negative attitude towards people with special needs who are seen as being able to get away with anything and taking time and resources away from ‘normal’ people.

There needs to be a greater understanding of the needs of people on the spectrum. It’s okay to explain behaviours in terms of an Autism/Asperger’s diagnosis — but the blanket approach to this is not okay, and it is not okay to roll out this excuse without following up on it.

As far as I’m concerned, being vocal about what we are doing and why — and being seen to be proactive in working together with other people to aid understanding and change — is the best path towards acceptance.

Don’t give excuses; give reasons and act on them (image courtesy of Stuart Miles at FreeDigitalPhotos.net)