Diagnosis Denial

Back in the second week of March I wrote this entry, but never did post it to the blog. I know that part of the reason was that in writing this out I think I finally abandoned the denial I was describing, and I wasn’t sure how to acknowledge that – so the post was never posted. Here it is now, my thinking from just 9 and a half weeks ago:

In this interval between seeking help and being given a diagnosis I find myself struggling with the idea of diagnosis. Co-incidentally, it turns out that quite a few people are struggling with the same idea more broadly, in the form of Edition 5 of the Diagnostic and Statistical Manual of Mental Disorders (which, amongst other changes, is redefining the way that people are diagnosed as being on (or off) the autism spectrum).

Reading the newspaper articles it appears that my son will qualify for the diagnosis of Asperger’s this year, but maybe, probably, who knows?, next year he will not be considered to be on the spectrum.

This is a tad confronting, because it’s hard enough dealing with the denial I’m experiencing in regard to my son being given a diagnosis without considering it may only be a temporary measure.

If I were to write a list entitled Why I Am Thrilled To Get A Diagnosis that list would include points like:

  • I feel optimistic that now we will have access to strategies that will really work and support that will really help.
  • My husband is throwing himself into the parenting challenge of having a special needs child, and I feel as if we are more of a partnership in relation to parenting than we have ever been.
  • I don’t feel quite so determined to blame myself and my various parenting and work/life balance choices for my son’s social dislocation (less parent-guilt is surely a good thing?).
  • I can explain to anyone I want to (and I’m not sure how much I do want to) that my child is not simply “out of control” (although that’s still quite valid, when it’s true) but that he really struggles in certain scenarios more than children inside the bell curve (and off the spectrum) and that we are genuinely working on it and would appreciate their understanding.
  • Plus – I nearly forgot – getting a diagnosis means we can access much greater support for having our son in school, and since we can see how much happier he is in the structured environment of a primary school (as compared to the play-centric curriculum of preschool) we really, really want him to make the transition successfully this year.

But as soon as I look at this list I begin to make a new list called All The Reasons Why My Son Does Not Have Asperger’s:

  • He makes eye contact – when he is interested in your response.
  • He has a sense of humour that relies on absurdity and multiple meanings.
  • His social delays might be explained by his serious jaw injury last year that saw him stop talking for some months. Which, come to think of it, we only had diagnosed as a serious jaw injury because he stopped talking, so maybe this point is too circular to be included…

And that is where my post stopped. My enthusiasm for proving the diagnosis wrong was quite put off by seeing how many positives there would be in receiving a diagnosis. And, to be honest, when I started trying to compile this list of All The Reasons Why My Son Does Not Have Asperger’s I really couldn’t come up with too many bullet points. The experience of hearing the paediatrician announce “Your son has Asperger’s” was something else again, and was still nearly a week away.

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