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Monday, December 6, 2010


Fortunately, most of my friends have healthy children without disabilities. This means I have not been placed in a situation of struggling to find the right words in an attempt to offer optimism or comfort. I'm glad about that. Both for my friends sakes and also because I am known to speak before putting my brain into gear. No doubt I would inadvertently offend or bemuse with a clumsy attempt at sympathy.

In this instance it is I who has the misfortune of being on the receiving end of others well intended insensitivities. I understand the impulse to provide reassuring words. It's a genuine attempt to minimise negative feelings in others (and often yourself too). Yet minimisation of how a parent feels about their childs disability is experienced as minimisation of what a profound life event it actually is. It diminishes the right of parents to cry and grieve openly, to express their fears about their childs future. If people rush in with "it must only be mild Autism so he'll probably be fine". Then there is little room left to explore and discuss all those anxieties that keep you awake at night, and distracted during the day.

If people say " must be a relief to finally know..". They leave me with one of two choices. To agree, which I don't. Or disagree, thereby making the commenter feel bad. But as I have had to point out to several people who came to this illogical conclusion, Autism diagnosis was not a relief. It was the realisation of the worst case scenario. Relief would have come if the Drs said, there is nothing to worry about, he is simply an intelligent little boy who needs lots of stimulation. When I took Harri for his assessment it was to discount Autism, not to verify it. Shock, disbelief and worry, yes, relief no.

Interestingly for me, one of the most sympathetic comments was from a friend who said (keeping in mind English is her second language) that she would kill herself if either of her children were diagnosed Autistic. I disagreed immediately with her hyperbolic statement, because I knew she wouldn't. But what she said did indicate a true understanding of the real pain and concern that goes along with ASD in your child. And although suicide had not entered my mind, it showed real empathy for the depth of my experience.

This is all new to us, and conseqently to our friends and family. I don't expect anyone to handle our situation with any more grace than I would. Which would probably be little. What I can say has been of most value to me are those who have inquired as to how we are all going, but not laboured the issue. Those who have clearly taken some time to read up on ASD so they have a better understanding of Harri and the challenges we face as a family. And those that take the time to ask how it is for us, rather than assume to know or offer unsolicited advice and cliches. I am aware that some parents are left bereft of support from those in their social network due to ignorance and apathy. My heart really goes out to those people. My husband and I are extremely lucky to be surrounded by loving, thoughtful and exceptional people. Thankyou to you all.

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