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.


Shapes and Labels

I’m an educator and musician. I know from my experience that seeing shapes and noticing patterns is how children – and grown-ups – make sense of the world, and an important part of seeing and noticing is knowing the labels that belong to these shapes and patterns: once you know what a pentagon¬†is you start to see them everywhere; knowing they are called pentagons means you can talk about them. Without that label ‘pentagon’ all the pentagons of the world merge with all the other unmentionable polygons of the universe in the arena of what-we-cannot-discuss.

I’m an advocate for students developing vocabularies about what they experience right from the start – no avoiding technical terms, no preservation of a mythical linguistic ‘innocence’. If the child is interested enough to want to talk about something they will learn how to say its name: exhibit A – hippopotamus.

Equally, I’m an advocate for not prescribing or limiting how children can perceive the world: correcting a child’s perceptions prevents the adult from learning about the structures the child has already conceived of – exploring a child’s perceptions is more joyous response and results in more learning, for everyone. Children operate quite logically, and if we can’t see the logic it’s not that it isn’t there, it’s that we haven’t figured it out yet.

And, as of nearly five years ago, I’m also a parent, the mother of a gorgeous little boy who has intrigued and delighted us since his arrival in the first quarter of 2007. He’s starting school this year, ahead of the game in some ways (able to read, to spell, to count beyond 100 and back again) and behind in others (following instructions, doing what the group does, making friends). The discrepancy between the ahead and the behind is certainly sufficient for him to be classified as ‘special needs’ and we know we are on the verge of a capital D diagnosis.

We’re going to learn that our son is Gifted, and we’re going to be told that he is somewhere on the Asperger’s end of the Autism Spectrum. We’ve seen enough specialists (and enough specialists have seen us) to know that this is what is coming.

It will be a relief. And it will be somewhat devastating. It will challenge who we think we are as a family, and it will confront the way my husband and I engage in our parenting. It will make us examine our own childhoods, and it will give us permission (just that little bit) to feel as exhausted by parenting as we really are.

And then there is the terror that the labels my son is given will prevent people from seeing his real dimensions, the fear that maybe labels will prevent him from knowing himself without overwhelming self-consciousness. The usual parenting anxieties as experienced through the lens of designated difference.

This blog is this story. Thank you for having me, and welcome.


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