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Saturday 24 August 2013

"but all kids do that!" my growing frustration with flippancy and ignorance.

I was going to compose this blog chronologically, respectively but then I thought no, life is not a straight path but a winding multi terrained obstacle course! I slipped off the writing cliff but have clawed my way back, at least momentarily.

Sometimes, niggly things will recurringly surface and the need to purge at 4am becomes overwhelming. This is such a moment.


I am sure that many parents of kids with autism will hear these statements "..but he seems fine to me" or "my kids do that". I internally scream at these wonderful harmless musings, and they may even come from the lips of family and friends. I want to shout "do you actually think I invited autism into my family?" I want to gently tell them that when my boys went for their ASD assessment, it was perhaps the only test I wanted them to fail. I was convinced that everyone else was wrong and my denial was completely founded and correct. I had alot of growing to do, especially if I was the assistant director of my boys growth and development also. It was never a goal of mine, to have a double Autistic Spectrum diagnosis!

I am actually really amazed that a telepathic snap judgement can be made so easily, about someone else's child!

When those around me are educated about ASD they can spot the inner torment of my dudes a mile away. They can hear their gentle humming or see the sometimes inconspicuous finger flicking. This is how kids and indeed adults cope with our world, block it out and visualise their own reality. The people who see what others ignore and have no sight for, are my constant reminder that yes, ASD exists  in my gorgeous and amazing boys. Despite this acknowledgment, I am incredibly grateful to those who CAN see.

I do actually have moments when I forget, when life is gentle and easily paced, when things seem to have an essence of normality. Then the storm brews and our house is lifted into the air and spun around - we all know the scene right? Except our life reverses, it's not Technicolor, far from it. Everything is black and white with no space in between. There is screaming, tears, anxiety, self loathing and incessant demands. It's cyclical, it's ok. We go back to the drawing board to inject some colour; visuals, diaries, comic strips, social stories, hope and unconditional love.

To those of you who say the quips above to the parent of an ASD child, please know that how it is understood sounds like this - you are a liar - you are imagining things. Perhaps I may start to wonder if all those professionals who pinned an unwelcome label onto my children are delusional or unprofessional, perhaps I am??

Ok, so this is more of a rant than a chronicle, but it's incredibly  important to remember that if you have no experience of Autism and in particular (to my family) Higer Functioning Autism then enquire, educate and embrace the knowledge that ASD exists where it is not completely obvious. Show respect and empathy, or;  maybe highlight the thought that your kid, if they have so much in common with mine, might actually need to fail those very same tests?

Thanks, in advance, for reading.

Roisin





2 comments:

  1. Please leave feedback, would love to hear people's thoughts. Thanks!

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  2. Wow Roisin- beautifully wrote and loving the accuracy of how life can be.
    Keep up the writing

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