Tuesday, September 21, 2010

finding out, falling over and one of the lessons learnt along the way

At home, on the evening that Erin was finally given the diagnosis of Asperger's syndrome, I fell off the back step, hurting my knee (resulting in a week-long limp/reminder) and a smashed glass of Red. The combination of a step (no matter how small) and a head full of distraction is a dangerous thing.

Despite knowing for months that the diagnosis was a likely occurrence (time in which I spent distracted from my PhD and reading instead about Autism/HFA/Asperger's) the actual diagnosis come as a shock. And then it was a shock that it was a shock.

Mostly I spent those first couple of months alternating between grieving those characteristics that I thought were all Erin, but which now were apparently shared characteristics of the diagnosis, and knowing that Erin was Erin no matter the diagnosis. That he brought his own slant to Asperger's. It was Asperger's Erin style.

Trying to educate the family has been less than easy and it was intellectually interesting viewing how Erin's dad (we have been apart for many years) went through the same stages of panic, grief, acceptance, panic, grief as I did but on a different time-line. Negotiating other's understandings of Autism/Asperger's has also been difficult. It is a topic that is highly sensitive, even with friends/family who don't have kids on the spectrum. I understand this as everyone has a multiple of experiences and access to different 'truths'. There is comfort in 'knowing the truth', and this serve people well. Unfortunately if the truths held by different people aren't compatible then feelings are hurt.

As an example, while I am not completely sure now, for a while there (in my making-sense-of-this time) I was more of the opinion that Asperger's was genetic and that a lot of money had been spent researching the possibility that Autism resulted from immunisation shots, without the results to back it up. Further, I was (still am) dubious about the assertion that because of the public health campaigns undertaken and the money spent on immunisation, meant that governments were/are motivated to keep any causal link under-raps. During the time in which I was, quite feverishly, trying to understand how this happened and what portion of blame was mine  - why didn't I realise that kids shouldn't scream when extended family (i.e. my son's grandmother) come over, to the degree that the child must be taken from the room and slowly, slowly re-introduced?!; amongst many other self-deprecating ideas. I had the conversation detailed above with family who, with a baby of their own (NT), were trying to understand their own world and their own decisions (and fears). They had chosen not to immunise their child and was convinced (as were friends of theirs with a child with autism, allegedly) that immunisation was to blame.

What I heard in their argument, was that it was my fault (although I'm sure they would be mortified to know that their words affect me in that way), that once again, I was to blame (don't you love mother guilt). Though come to think of it, they could have read my assertion (genetics) as blame on the parents, also.

Now for the job of wrapping this disparate post up into something resembling cohesion....

In conclusion ;-), before the official diagnosis I felt that it held the golden key, that we would open the door to the rest of our lives, this new knowledge was only light baggage which could be easily carried over the shoulder. Instead it was a shock (one that I waited 8 months for!?). New complexities arose, telling people, sharing this with my son's Dad, with my partner and his kids in a way that they could accept Erin for who he is (not there yet with the kids but working on it). Trying to see where others are coming from, within their own contexts, when they tell me their 'truth' of Asperger's, or who Erin is (there is many more in this category than the conversation mentioned), has been one of the biggest hurdles.

I feel safe now in the knowledge that my truth is mine. Even in its fluidity, it holds a comfort to know that I do not need to swap someone's else's truth for my own. But neither do I need to convince them that they are wrong.

Oh, and my knee healed nicely, thanks ;-)

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