Are you sure you want that to be one of your three hundred questions?

The title of this post, by the way, is a family in-joke.  Do shout if you want it explained. 

Anyway.  Longstanding readers of this blog may distantly remember that, some months back, the Interview of the Three Hundred Questions officially confirmed that Jamie had mild autistic spectrum disorder, and that I reported on that in brief and expressed a hope that I'd get round to writing a more detailed account some time within the next several months.  So, lo and behold, here I am several months later with a more detailed account.  Never let it be said that I welsh on my obligations.

We received an interview date for Tuesday, August 5th, with a warning that we could expect the interview to take around three hours.  This was no great surprise – after all, three hundred questions have got to take a while to get through – but it did raise the issue of what to do with Jamie, who was never going to play happily in the consulting room for anything like that long.  The logical thing to do would of course have been for Barry to go along on his own, leaving me to take care of the kids, but I was far too interested in the whole process to want to miss it.  Fortunately, my mother came through like the star she is and rearranged her work schedule to be able to stay with Jamie (we took Katie along).

We were the only people in the waiting area, this time.  Dr M. arrived after only a few minutes to usher us through into the same consulting room we'd been in before, complete with same formaldehyde smell.  He asked us how things had been going since he last saw us.  Very well, as it happened.  I have a slew of planned but unwritten blog posts about this, but, in brief: over the previous few months, Jamie had been doing more imaginative play, he'd finally got the hang of using first- and second-person pronouns correctly, and there had been a couple of times when Katie had started crying and Jamie had come to grab the hand of whichever parent happened to be available and pull them over to her.  ("Katie is upset," he told me as he pulled me along the hall.  "I think she needs a…" slight pause for consideration… "a cuddle.")

Incidentally, a few months prior to this he'd had his booster jabs – the dreaded Multiple Vaccines At Once.  Eight, in fact.  Three of which were the infamous MMR.  And it was roughly around that time that all this improvement started.  I don't see this as anything more than a coincidence, but it's one that leaves me dryly amused.

Dr M., in turn, filled us in on the reports he'd had from the speech therapist – which we had a copy of already – and the nursery, which we didn't.  I had a quick look at that one, which was a standard form, mostly a tick-box format looking at the frequency with which they'd observed various behaviours with regard to areas like social interaction, imaginative play, other forms of play, and emotional expression.  (There was also a section at the beginning for writing a brief description of him, but that hadn't been filled in.)  Dr M. has sent us a copy, so I've had a chance to look at it more closely since, but even on a quick glance at that one, it was clear there were a lot of things he wasn't doing in the nursery setting (some of which he does do at home, such as looking at our faces).

Having caught up on all that, we got down to business.  The official name for this interview was, Dr M. explained to us, DISCO – the Diagnostic Interview for Social and COmmunication disorders.  He tentatively reminded us again that it was, um, quite long.  Were we all set…?  We confirmed that we were fully prepared for it to be a long haul, and ahead we went.

It was, in actual fact, a lot easier than I'd expected.  I'd had mental images of gruelling exams, but this was really just talking about our child in great detail, no more a chore to us than to any other doting parents.  Katie played with the toys for a while, although, as time went on and she became increasingly fractious over her insufficient nap, I picked her up and walked the few steps across the room and back with her on my shoulder.  Barry and I fortified ourselves with his supply of blackcurrant squash (Dr M. declined when offered) and, all in all, it felt like a lot less than three hours.

The questions were arranged in sections.  Having confirmed that there had been no problems with Jamie's birth or my pregnancy, Dr M.went on to ask us about his babyhood – about how he'd been in terms of feeding, weaning, sleeping, crying, and about whether or not he'd started to show various behaviours (lifting his arms to be picked up, turning to us as he pointed to something to check we were watching) at particular ages as he grew. Trying to remember a negative reliably is difficult under any circumstances and more so when trying to think back three years – no, now you come to mention it I don't remember ever seeing him doing that – do you? – but did he really not do it, or is it possible that we just aren't remembering?  We continued to on to questions about his development in toddlerhood, and thence to further sections – eating, sleeping, toileting or lack thereof, speech, socialisation, imaginative play, physical development, what sort of things he does on a typical day, and a whole load of others that I can't even remember.  Katie played with the toys for a while, then got grumpy as her usual practice of waking up from a nap far too early started to catch up with her; I spent a large part of the interview walking back and forth across the width of the small room with her against my shoulder.

The clear pattern that was emerging was no surprise to any of us – we'd reached the stage where the DISCO was merely a formality (albeit an important one) in establishing the diagnosis.  However, this was the first time that we'd put it all together in so much detail, including some points the significance of which we hadn't even realised at the time, such as some of the things he should have been doing in late infancy/early toddlerhood and wasn't.  I found it absolutely fascinating – not only going through and building up the full picture in such a way, but also learning more about the finer details of normal development in a non-autistic baby.  It's going to be so interesting watching Katie do these things as she grows.  (I know I'm making an assumption there, but I don't think it's too far out; just as I had an inkling from very early on that Jamie would have some form of autistic spectrum disorder, so my gut feeling about Katie from the start was that she was going to be my neurotypical child, and already she's doing things that bear that out, such as lifting her arms to be picked up, or imitating us.  Little details which I'd have taken for granted if not for having learnt more as a result of Jamie's differences highlighting what the norms should be.)

Finally, we were finished.  I'd assumed that there would be some complicated system for totting up and scoring all the answers, such as there'd been with the Schedule of Growing Skills that we'd done with the health visitor, and had wo
ndered how on earth this would be managed for three hundred questions; I had, in fact, been fully prepared to have to wait until a further appointment for an answer to give Dr M. time to calculate the scores on the doors.  In fact, it was much simpler than that.  What he did was to use the DISCO to see whether there was a problem in each different area covered; yes or no?  Then he went through a list of the ICD criteria for autistic spectrum disorders and ticked off the symptoms that had shown up as problems on the DISCO, to see whether enough showed up in each category to meet the official criteria for a diagnosis, thereby neatly summarising the salient information from the three hundred questions without having to come up with detailed counts for each category.  It reminded me of what I'd heard about the US electoral college system, though without all those problems with hanging chads.

Having talked us through the symptoms he was ticking off as he did them (I was a little distracted by Katie growing increasingly fractious, but I appreciated the thought), Dr M. arrived at the bottom line; yes, he confirmed, it did indeed appear that Jamie had a high-functioning autistic spectrum disorder.  I'd wondered beforehand how I'd feel when those words were finally said – after all, although I wasn't bothered by the thought of the emerging diagnosis, perhaps having it made official would feel different.  Perhaps I'd suddenly feel my heart plummet at the reality of it all.  Perhaps, on the other hand, I'd feel relieved to have the diagnosis made.  As it turned out, I was distracted from any profound emotional reaction by Katie choosing that moment to utter a loud annoyed squawk into my ear.

(Although, while we're on the subject, can I just mention here that I hate the term 'high-functioning' to qualify autism?  I know many people are offended by the corresponding term 'low-functioning', and with good reason, but does anybody else apart from me feel the term 'high-functioning' damns with faint praise?  Machines function, for goodness' sake; my child lives his life just as anyone else does.  I'd like him to be able to do a lot more in life than just function, and I'm not wild about the implication that the best he can hope for is to be able to do so on a better rather than worse level.)

"I gather this doesn't come as a surprise to you?" Dr M. asked diffidently.  I confirmed that it did not, and we moved on to talking about what would happen next.  What would happen next, it appeared, would be various different acronyms.  First of all, he would get another IEP; then there would be something called a LISM, which stood for Local Inclusion Support Meeting and would involve all relevant people getting together to discuss how he was doing at nursery and what the plan there should be; and, at some point after he'd received his school allocation, there would be a TISM, which stood for Transfer Inclusion Support Meeting and would be the discussion of what support he would need on going up to big school.  Dr M. would see us again in around six months. 

That seemed to cover everything for the moment, so we went back home to relieve my mother.  She and Jamie and my grandmother, who was also visiting, had been having an absolutely grand old time with a giant alphabet floor puzzle, which Jamie thought was wonderful.  (Which, come to think of it, is rather apt for a boy with so many new acronyms in his life.)

Just to close, a quick update as to what's happened since: Manda did his updated IEP (we have a copy – the goals are to encourage him to partner other children at relevant times in the nursery games, to encourage turn-taking within small groups, and to support him to use visual communication systems to initiate requests).  The LISM is scheduled for this coming Monday, which is what stimulated me finally to get into gear and finish this off; I didn't want to be too many acronyms behind.  I shall try and write my account of that, um, let's see… at my current rate, probably by some time around next February.

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1 Comment

Filed under Here Be Offspring

One response to “Are you sure you want that to be one of your three hundred questions?

  1. It all sounds, er, interesting – it is really hard to remember back to when your child was a baby – a colleague uses an interview that asks you to remember what you did for Christmas/first birthday/summer holidays, and what they were doing at the time, which helps a bit!
    Interesting what you say about “high-functioning” – I generally take it to mean “higher than some other kids in their mainstream setting, so watch out!” rather than “higher than those LOW-functioning kids over there”.

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