"So, what’s wrong with your little boy?" the heavyset woman sitting next to me asked. She and her son, a boy of about eight or ten, were the only ones in the clinic waiting area apart from the four of us. It wasn’t a waiting room, as such – just a widened area of corridor with some chairs the token few rather random books and magazines on a corner table. There was no sign of any toys, which is something of a drawback when the clinic currently using the waiting area happens to be a paediatric clinic. Jamie was bouncing around the place with his usual unstoppable energy; I hoped we didn’t inadvertently end up with an ADHD diagnosis while we were at it.
I explained that we didn’t know yet – we suspected autistic spectrum disorder, but were about to see Dr M. with a view to getting a diagnosis.
"Dr M. isn’t as good as Dr H."
"Oh, really? How so?"
"He doesn’t listen as much. And rushes you."
"Was he the one who lied about me?" the boy chimed in.
"No, that was your school…" There was one of those quick discussions that leave onlookers lost as to the ongoing plotline, some kind of complicated saga boiled down to a few inadequately-summarising comments. The school had claimed he wasn’t having problems when he was. Or something. "But I got a diagnosis for him in the end," the woman told me triumphantly.
"How?" I inquired.
"I took them to court."
I wondered whether it would be impolite to inquire as to the diagnosis thereby obtained, since no further details seemed forthcoming – on the one hand it was pretty personal information and if she hadn’t shared it at the obvious opening maybe that was because she didn’t want to talk about it, but, on the other hand, she had already asked about Jamie. Perhaps it would be impolite not to reciprocate the interest she’d shown in my child by asking about hers in turn. I wished Miss Manners had written a guide to the etiquette of hospital waiting room conversations.
After a forty-minute wait, during which further dribs and drabs of conversation did eventually cover her son’s diagnosis (indeed, diagnoses – it was apparently one of those diagnostic ragbags of this and that which seemed to involve a bit of mild everything) as well as some random snippets such as the fact that their cat’s name was Katie also, they were finally called through by Dr H. A few minutes later, the maligned Dr M. wandered down the corridor, reading the referral letter clipped to the front of Jamie’s notes as he came, and called us through.
He seemed, despite my waiting-room-colleague’s opinion, to be a perfectly nice doctor – a thin, greying, quietly spoken man with a slightly absent-minded air. He led us into the room, which, fortunately, did have a box of toys; between those and the delights of climbing up on the examining couch, Jamie occupied himself quite happily for the whole of our consultation. The room (or possibly Dr M., now that I think about it) also had a lurking waft of smell which, after a few I-know-I-know-this-from-somewhere minutes, I identified as the smell of the dissecting rooms at medical school. Since this is a small community hospital nowhere near a medical school, I’m still in the dark about the source of this, which is possibly just as well. Dr M. apologised for being so late (something to do with some confusion over what waiting area people were waiting in, which had held up clinic) and asked us what our worries were.
I explained that we didn’t have worries, as such – we didn’t see any of Jamie’s differences as problems, at this stage. But, for a long time, we’d been noticing a lot of little things that had led us to speculate on whether he might have mild autistic spectrum disorder; and now that he was at nursery, some of these things seemed to be causing more problems in that setting, so I’d decided it might be time to…. well… I realised that saying ‘get a diagnosis’ didn’t sound quite right, since, as Sidheag pointed out on one of my previous posts, we might well not be able to get as far as one at this stage. Start working towards some sort of, um, diagnosis-type-thingy?
With pen poised at the top of a fresh sheet of paper in Jamie’s notes, he asked me to go through our main concerns. Since the nursery setting seemed to be the one where his differences were actually starting to cause some problems, I decided to start with the concerns they’d raised – his lack of interest in the other children or staff, the way he seemed to go off into his own little world, and, probably most important as a current practical issue, the fact that he didn’t always seem to take in instructions given to the group and the staff were finding that they really needed to tell him things on a one-on-one basis and sometimes use picture cards rather than words to get the message through. I went on to talk about the other things we’d noticed – the oddities in his language, the not telling us when he wanted food or drink (which, incidentally, he’s actually been getting quite a bit better at over the past few weeks), the marked paucity of imaginative play and lack of any role-play. (By the way, I didn’t actually use the term ‘marked paucity’. I’m less pompous in real life.) It’s surprisingly difficult to remember all of a list of things like that when they haven’t really been concerns at the time but more oh-yes-that’s-interesting-in-passing. I was glad I’d made out a list to give Carol at Jamie’s assessment, which she’d sent to Dr M. and which he had in front of him; unfortunately, I hadn’t brought a copy myself, and at one point covertly squinted at his copy to try to read it upside down and see whether I was forgetting anything.
"Let’s go back to the beginning," Dr M. said. "Was your pregnancy normal?" We went through Jamie’s medical history, such as it was – totally normal pregnancy and delivery, breast-fed although with problems due to the tongue-tie which led to him not gaining weight for ages, otherwise a healthy baby, under the care of the ophthalmologist and orthoptist for his squint. Family history? Asthma on my side. No official diagnosis of anything developmental, but there are things about my childhood – my lack of any real interest in forming friendships, my focus on odd interests such as child development and my lack of understanding of how these might be perceived socially – that have long made me think in retrospect that I’ve probably got a foot on the autistic spectrum myself, even though it never got to a formal diagnosis.
Jamie’s early development? Normal. First words? "Muh" for ‘milk’ and "dada" for ‘daddy’. After that, not so normal – after coming out with those two at around a year, he’d then only picked up two more words over the whole of the next year. He had, however, picked up several letters. He was fascinated by what things said from an early age and would point to the letters on the front of his books, in response to which I’d tell him what each letter was and what word they spelled. (By the way, since one of his books was Goodnight Moon and I’m a Stephen King aficionado, this gave me the perfect chance to say "M-O-O-N spells moon! Laws, yes" at regular intervals. I haven’t had such a good cue line since I asked to borrow my father’s video card and he said "So how do I know I can trust you?" the day after I passed my final qualifying exams as a doctor.) And Jamie would repeat the letters. At one stage, he was saying more letters than words, and looking as though he would fulfil my mother’s wry prediction that he’d bypass speaking and move straight to e-mail. Then we got the dummy out and – whoomph! Within weeks, he was talking fluently.
Dr M. went through more details of Jamie’s life. How was his eating? All right, though his difficulty in asking for food when he wanted it could present problems – he was definitely eating more since Barry had started noticing what foods he didn’t seem to touch and preparing things we knew he’d like for him to eat on those nights. Sleeping? Unfortunately, I told him, we currently seemed to be going through that dropping-the-nap transition stage where Jamie was still tired enough to need a nap during the day but had trouble actually falling asleep for it. But until recently, he’d napped just fine, and, although he took ages to fall asleep at bedtime, that probably reflected more on our routine for him – he would nap too late in the day and throw off his bedtime sleep. Once he did get to sleep at night, he slept fine.
"Children with developmental problems often have a lot of trouble settling," Dr M. said. "What we do is give them melatonin." I was intrigued – was this why Jamie had been so difficult to settle in a cot when he was a baby? He slept just fine in my arms or when I co-slept with him, but I never had any luck with putting him down Drowsy But Awake the way all the books tell you you should. (Eventually I gave in, co-slept until he was one and then did sleep training-lite for bedtimes so that at least I could get evenings to myself.) I’d always just seen that as an example of how all children are different and the one-size-fits-all solutions blithely offered by the books don’t necessarily work. Which I suppose is still a fair explanation – I just hadn’t realised that this particular difference was one that might come with a diagnosis attached.
What sort of things did Jamie enjoy doing during his day? Dr M. wanted to know. Reading, I told him – he loves books. Climbing. Getting into everything. Doing jigsaws. I told him about Jamie’s skills with his computer – he knows how to switch it on and off and work the programmes, he picks new computer skills up very quickly when shown them, and he’s worked out how to do a lot of things on the computer just by experimenting by himself. I told him about his passion for numbers and anything number-related. "He memorised the entire list of Mr Men books by number at one point," I explained.
"So you could just say to him ‘What number is Mr Happy?’ and he’d say, um, number 5 or whatever it is?"
"Number 3," I told him automatically. "Um – sorry. We ended up learning them all as well. It comes with the territory. And he’s like that with Thomas the Tank Engine as well – he knows all the numbers of the engines, but he’s not really that interested in the stories."
We covered various other bits and bobs, including whether he showed any reaction to the other children at nursery (not really, from what Manda told me and from what I saw when I helped out there for a session), whether he made eye contact (he does with me, but, when all this first came up, my mother told me she’s noticed that his eye contact’s poor, so perhaps he does have problems with making eye contact with people apart from us), and whether he would point something out to us just because he wanted to share his interest in it. This is, apparently, called ‘protodeclarative pointing’, and I think Dr M. said it showed up in normal children by about fourteen months of age, although I may possibly be confusing that with something else he said (there was definitely something that Jamie wasn’t doing that Dr M. said normally showed up by fourteen months). I hadn’t really noticed the lack of protodeclarative pointing until Dr M. asked about it, but, indeed, Jamie does not do it. I’ll often hear him chattering away to himself while we’re out and about, in his own little running commentary on whatever, but unless I ask him what he’s saying I won’t get to hear it – he won’t try to attract my attention to share it with me.
Dr M. had a go at talking to Jamie, who had found a number book and was, of course, deeply absorbed in it. "Six crayons," he read aloud. "There’s a blue one for the sky, an orange one for the wall of the house…" The picture of crayons that he’d found also pictured a picture, if you follow, and he correctly listed the different colours of crayons and which bits of the picture they had been used to colour in before turning to the next page. "Seven…" (I can’t even remember what there were seven of – whatever it was, he read it.) "Eight boxes." (Nearly right – they were actually blocks. He reads by the whole word method.) "Nine yadybirds. But there is one flying away! One, two, three…" He carefully counted all the ladybirds (correctly) before going on to whatever the ‘ten’ was and reading that, all without showing any sign that he was aware that Dr M. was behind him and trying gently to talk to him.
"Well," Dr M. said eventually, at the end of all this, "there’s obviously something here." I hoped we were going to get more of a diagnosis than ‘obviously something’, which somehow lacked a certain panache as diagnoses go. Though, of course, it would make a good blog post title. Before my thoughts could meander off into consideration of Something Spectrum Disorders, that much-needed new DSM classification, I realised that, of course, he hadn’t actually finished. "…And it does look as though we’re looking at some kind of autism. Which I believe is what you were thinking, wasn’t it? Um – how much do you know about autism?"
I assured him that I had read extensively on the subject, in addition to having picked up the odd bit of knowledge professionally, and knew plenty about it. He went through the description anyway, presumably to make sure I wasn’t missing any of the basics on the topic, which I thought was nice of him.
Autism, he explained, causes problems in all of three different areas, known as a triad of impairment (I remembered this bit from my reading, although I could never remember all three areas – much like trying to remember all seven dwarfs). The first area is social skills. Jamie, obviously, isn’t showing the signs he should be of wanting to play with, or at least alongside, other children, but the lack of protodeclarative pointing is apparently significant here as well – he didn’t automatically look to share his observations of the world with other people. The second area is communicative skills – I forget which particular examples Dr M. mentioned here with regard to how Jamie was doing, but he did feel that there were things showing up in this area as well. The third area is imaginative skills – autistic children don’t really indulge in the sort of imaginative play typical of other children. They tend, instead, to show rather restricted and repetitive patterns of play, which is apparently a fourth sign, a sort of fourth member of the triad, as it were. Jamie’s play, of course, is pretty typical as far as that’s concerned.
So – check, check, and check. However, these diagnoses are not made lightly (or shouldn’t be), and, although we do seem to have moved somewhat beyond the well-just-maybe-possibly-but-I-don’t-want-to-be-making-a-fuss-about-nothing stage, there are still steps to go through before the diagnosis can be made official. Firstly, Jamie needs to be assessed by a speech and language therapist as well. This will be done with him in the nursery setting, and she may also have some other assessments she wants to do. Secondly (or possibly even firstly, depending on whether Dr M. has an appointment slot free before or after the speech therapist does), Dr M. needs to see one of us again for a diagnostic interview. I’d thought that was what we’d just had, but apparently a diagnostic interview is more structured and involves going through a checklist of (gulp) three hundred questions to get as objective a picture as possible. Dr M. will also be writing to the nursery to get them to fill out a report, and asked me who the special needs co-ordinator was for the school. I wasn’t actually sure about that one, but gave him Manda’s name as a starting point since she was the person I’d been dealing with. I gather there’s normally a hearing test somewhere in there as well, but in Jamie’s case that’s already been done, last year, as part of the investigations of his delayed speech. Dr M. will write all the referral letters needed to get this moving, and will send me copies. He asked diffidently whether I wanted the leaflet from the National Autism Society that he usually sends to parents at this stage, seeing as I already knew a lot about it; I figured it might be interesting, so opted to have it. That seems to cover everything for now, so now we’re waiting on those appointments.
"So, how do you feel now?" my mother asked me later that evening on the phone, in the hushed tones reserved for those subject to Very Bad Events. "I know it can’t be an easy thing to hear."
"Huh?" I was surprised. "Mom, we’ve known for ages that he’s probably got ASD."
"Oh, I know, I know. But… somehow it’s harder to hear it said, isn’t it?"
I can see how that could be the case for people, but I honestly don’t feel that way. For me, there just isn’t anything particularly frightening about putting a name on Jamie’s differences.
If you’ve been reading this blog for long, you hopefully know what a terrific little boy my son is. He’s bright, funny (sometimes intentionally, sometimes not), affectionate, quirky, filled with enormous enthusiasm and zest for life, and just generally adorable. He is a delightful child and an absolute joy to have around. (He is, granted, also sometimes a complete and utter pain, but I don’t think we can blame ASD for that – I think that one’s down to him being three years old.)
I don’t feel that attaching a label to my son’s special qualities diminishes his wonderfulness; I feel that attaching my son’s qualities to the label enhances the label. If this is what parenting a child with ASD is like, then I’m all in favour of the experience.