“A degree of autism” and Dr X

I’ve talked about LB’s broader diagnostic journey before. Today I’ve been thinking about the way he has been put on (and off) the autism spectrum. I had a shufty through his medical records (a source of bafflement, frustration and ‘what the fuck?’ moments) and traced autism through the various reports.  So, starting when LB was a toddler;

He became quieter and happier when he spotted the wheels on my mobile chair, and spent 10 minutes pushing the chair backwards and forwards with his eyes fixed on the wheels. (Speech and Language therapist, August, 1996)

Classic, stereotypical autistic behaviour flagged up, but the word autism doesn’t appear till the following year in a letter from the GP to the paediatrician;

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The Club of the Lesser Valued

I’ve been thinking about ‘diagnosis’ a lot recently (see here for reflections on LB’s diagnosis) and, in particular, the process by which parents are given their children’s diagnosis of some form of impairment when the impairment ain’t obvious. This is partly because of a project I was tangentially involved with which explored the experiences of mothers of children with cerebral palsy.  One of the main findings of that study was that participants were angry and upset when they found out that the diagnosis of CP was discussed among medical professionals several months (or longer) before it was disclosed to them.

In discussion, the paediatrician on the research team said that diagnosis was probably delayed because CP can be difficult to diagnose and health profs didn’t want to unnecessarily alarm those parents of children who turned out not to have CP. Apparently around 20% of children, in her experience, would turn out not to have CP after presenting some possible symptoms.

Now, I ain’t no scientist, but I couldn’t help thinking that this meant that the feelings of 80% of parents were being sidelined in favour of the 20% of parents who, presumably, would be pretty chuffed to bits that their children didn’t have CP after all*. I couldn’t understand why the emphasis was on not upsetting the smaller number of parents.

I got to thinking that maybe it was to protect the health profession against some form of legal action for mis-diagnosis, but this doesn’t really hold as an explanation.  Paediatricians don’t have to authoritatively diagnose children at that early stage, but could, instead, suggest that one of the conditions they want to rule out is CP. Emphasising that this is a very tentative ‘could be’ at this stage.

An email exchange with fellow twitteree, @lizith, a PhD student, involved speculation that health professionals may feel a need to protect some parents from a diagnosis.  Some parents may not ready to accept a diagnosis. This argument has always struck me as a form of paternalism and doesn’t have much substance based on the accounts of parents I’ve interviewed in the past who have largely been very keen to know.

So I can only conclude that this focus on the feelings of the minority is a reflection of broader responses to disability and impairment. The 80% of parents of children with CP have joined a new club.  The Club of the Lesser Valued.  The complexity, depth and reach of the negativity associated with membership of this club continues to surprise and depress me.

*I can remember before LB was diagnosed, but once the health visitor had identified serious concerns with his development, I was told to take him to an interaction type group called something like Learn to Play. There were about six kids at the weekly group and a pre-school teacher counsellor. I think we were all in a pre-diagnosis liminal state, so the atmosphere was pretty weird.  Apart from one little dude, Elliot, the kids tended to do their own thing.  The parents sat awkwardly talking about anything other than what we were doing there. One week, Elliot’s dad turned up with a bag from the Early Learning Centre. At the end of the session, he gave each child a little wooden Brio train.It turned out that Elliot had been released back into the mainstream and wouldn’t be returning to the group. Still makes me feel weepy, remembering that moment. Suspect Elliot’s parents don’t give it an awful lot of thought.   

History of a diagnosis (es)

LB and ‘diagnosis’. Well that was a winding old road, with a few false starts (and ultimately a dead end). I knew there was something up from the first couple of months. He was way, way too good. So good (undemanding, placid, cheerful, smiley and happy to just watch everyone) but every so often, he would have random outbursts in which he was inconsolable. I used to ask friends if they thought there was anything different about him but it was always a giant ‘NOOOOOOO.  Don’t be daft’… But I knew. Continue reading

Clutter disorder?

I woke up this morning with the intention of doing a bit of de-cluttering.  Bit of a general clear out.  So far, I’ve been unsuccessful.  I sorted through all the stuff on my desk, put it into piles and then put most of it back on my desk.  “So what?” I hear you say, through a big yawn.

Well, it’s a big what.  First of all, to give you an example of what I’m talking about, here’s a small bit of cluttered space that is to the left of where I’m typing right now;

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