Wednesday, 21 April 2010

and now what?

So –  a month has  elapsed and people are aware of the diagnosis which we received for J. The responses have been overwhelmingly supportive towards us and I am beginning to think towards the immediate future.  In among the positive stuff are the various “other bits” the comments that “ he doesn’t seem autistic” and “ are they sure”. These comments irritate me as they are similar to all the disbelief that goes through my own head. Yes “they” are sure about the ASD diagnosis – they spent over an hour observing and assessing J in addition to the reports from previous assessments both in school and at home. There is no doubt regarding the diagnosis and the only unknown factor is exactly where J lies on the spectrum. Even that is relatively easy – J is definitely at the high functioning end but not considered to meet the criteria for Asperger Syndrome.
In looking at J I notice the things I have always noticed but which in the context of his ASD diagnosis make much more sense. The echolalia for example – the stock phrases from films and TV programmes he uses in his communication, the echoing and repetition of phrases again and again so that I sometimes want to snap “be quiet”.  Not a good sign.
More than anything I notice the fact that his verbal skills mask a little boy who finds social situations and rules utterly confusing. On first meeting J he can appear to be very communicative (and he is), he will talk the proverbial off a donkey but dig a little deeper and the confusion will surface and this is behind his conflicts with other children when they occur. I am aware that at 7 all children can have their moments when social skills fail them. For J though this is more of a regular occurrence as he lives very much in the “here and now” hence the rages when things do not go his way.
 Watching J with his cousins recently was distressing as he failed to accept and understand their desire to change from the game he wanted to play to another game. They wanted to play Charades, and they wanted to act out film titles and book titles. It was totally beyond J even with the help given by L his older cousin and he went into a bit of a meltdown. We left and went home where he could play with Lego, use the Wii and generally understand and predict the outcomes.
I notice the meltdowns and the outcome of these, J will rage and scream, he will tell me “I hate you” and he will hit himself on the head in frustration.
If the surrounding environment is too loud and echoing J may (but not always) hit the floor with his hands over his ears.
So – all in all we are watching and waiting to see what the immediate future holds. I’d be lying if I said I wasn’t nervous about this.


cheeky curves said...

My niece has a diagnosis of Aspergeras and as she has got older her rages has become less. She is a beautiful girl with a childlike quality but we all love her.
One thing I am aware of in my work with clients who experience mental health problems, when practitioners are unable to come to a diagnosis clients a left and become frustrated because they don’t understand what is happening to them. I believe patience and acceptance works and i have seen clients engage where previously they had not, there is a rainbow end, and it may not be the colour that the world expect but its colourful all the same

Pagangracecat said...

It is so hard when there is not a diagnosis. For me the diagnosis (although earth shattering) was in some way a relief because it gave me a label to hang the odd behaviours on. Not having a diagnosis must leave people in limbo wondering who and where they are.
I totally agree though that ac cepting people for who they are (whatever quirks, foibles of oddities) works wonders for their self esteem.