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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The Experts

I’m beginning to sort them out, these experts newly arrived in my life.

First off, I simply don’t have time to acquire the expertise I need right now, so I need the experts; but since I don’t have the sufficient knowledge/experience myself to be an expert I have no objectively valid way of determining the degree to which I should place my faith in the pronouncements of these experts. So I have some trust issues, basically.

Secondly, there are so many of them, these experts. It’s a struggle some mornings to remember the names of the expert(s) I’ll be talking with that day. And it’s been a struggle to figure out exactly how one expert’s expertise differs from or complements the expertise of another. Differentiation issues here.

Finally, figuring out how to share the experts has been an unexpected challenge; I’ve been the one driving all the appointments, having the bulk of the conversations, collating suggestions, implementing (or attempting to implement) recommendations, working with everyone (husband, extended family, school, therapists) to keep up with developments and to all be on the same page with strategies. My son, whose appointments these really are, has ended up becoming familiar with the toy boxes of these experts while I seem to talk without end, going through these initial meetings repeating the same stories and concerns to one specialist and then another, numbing myself with these recitations and boring my child to frustration. “Stop talking, Mummy.” And when my husband comes along to these sessions I find myself dominating the conversations in ways I’d rather I didn’t, but it’s me who is synthesising and synchronising all these threads of therapy and education – I’m the one with closest thing to a global perspective on our son’s issues…. Yes. There are some issues of ownership – how do I balance being responsible with getting out of the way?

I’m finding it easy to trust the experts who understand that my primary experience right now is one of being overwhelmed. Overwhelmed in terms of time, overwhelmed in terms of responsibility and, most importantly, emotionally overwhelmed. Experts who understand where I’m at make me feel as if I can trust their judgment when it comes to my son as well, and while I know these experts have specific roles to play in my son’s development, for now I’m appreciating the role they are playing in helping me transition away from the crisis mode I feel I’ve been in for more than two years now.

This transition from a sense of chaos and crisis to one of understanding and action just couldn’t have been possible without the diagnosis, and I’m also struggling to reconcile myself with the failure of previous experts – GPs who said “he always seems perfectly fine to me” when I asked for advice for referrals to specialists who could help tease out my son’s particular matrix of issues, child psychologists who said “I’m not prepared to give a diagnosis at the moment” and left it at that without any recommendations regarding other experts who could help (diagnosis or no). I feel vastly let down by these gatekeepers.

It took just on a year to work through the maze of expertise to get the help my son needs, and in autism spectrum terms delaying intervention for a year is a disaster. At the same time as I experience relief and excitement at seeing an expert connect with my son and help him find his way through the world I’m experiencing extreme regret that I couldn’t have accessed this assistance from the first moment my son began abandoning spoken language nearly two years ago. Why isn’t screening for autism spectrum issues at the forefront of doctor’s minds? Why didn’t the disappearance of speech trigger stronger responses from these experts?

My next job is going to be helping the experts work as a team, specifically in regard to advising the education experts (aka ‘teachers’) at my son’s school who are new to working with a child on the spectrum. And after that? Blocking in some time with a massage expert sounds like a good plan to me…

No Words, No Time

The intention of commencing this blog was to give myself a space in which I could explore this new reality of being the parent of a child on the autism spectrum. 

What I’ve been experiencing in the past ten weeks has been far more raw, more time-consuming, more overwhelming and more confronting than I quite expected (even with my exceptionally dominant reality gene), and I’ve been astonished at my reluctance to put into words what has been unfolding in our lives and in my heart.

It could be that I’ve been resisting the requirement to craft and hone that comes with presenting experience in a written format. It could be that whenever I’ve been keen to share a thought, a development or an anecdote that I’ve just been too exhausted to string the words together, or that I’ve made the judgment that there are more important things to be doing with my time.

I suspect, too, that my by-line “a memoir in the making”, while meant descriptively (and not overly-earnestly), has ended up suggesting to me that I should present my thoughts in sequence, or with an overarching sense of order. And, of course, this phase of my life is a jumble, a chasm of terrors bridged by rainbows of triumph, with an ocean of appointments, advice and administration creating unexpected ebbs and flows in the rhythms of my life.

It’s late (crazy late), and I should be sleeping…..

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