Ambling to conclusions

In response to my recent post about the discussion I had with Jamie’s nursery supervisor about his differences and the possibility of autistic spectrum disorder, Clare wrote:      

  Hello. I hope you are feeling OK about all this. I wonder if people
might be jumping to conclusions a little too much. I guess only the
assessment by the specialist will give you real useful information at
this point. But I just wanted to say, don’t you think that 20 years
ago, you might just have thought that you have a little boy who is a
little bit shy for his age?

Similar thoughts go through my mind whenever I consider the subject.  Even with the attendant disclaimers  about possible/suspected/might-be that I’m appending to each mention of ASD, I do feel rather silly typing the term at all at this stage.  The only reason I have got as far as introducing the term into type at all is the fact that both the health visitors and the nursery staff have independently raised concerns about Jamie’s differences – if I’m overreacting in even considering the possibility, then at least I’m not alone in doing so.

But I don’t think we’re overreacting to consider it.  I think that what we’re doing at this point is not jumping to conclusions, but raising the question.  It’ll be the job of someone else to draw any final conclusions about that question’s answer.  But, yes, I think it’s one that does need to be asked.

Jamie almost never indulges in what the books call ‘imaginative play’.  A couple of times, I’ve seen him pretend to talk into a toy phone; a while back, he went through a short phase of giving the toy ducks in his bath drinks of water out of a cup.  There was that time he pretended a plastic corn-on-the-cob was a drinking straw.  There may have been a couple of other times I’ve forgotten.  But it really does come down pretty much to that handful of isolated incidents, over a couple of years that would generally be expected to be a time fairly rich in imaginative play.  I’ve never seen any role-playing from him – no pretending to be a fireman or a driver or anything of the sort.  I commented a few posts back about his new interest in cars being normal to the point of cliché, but realised quickly that that wasn’t, strictly speaking, the case.  He doesn’t play games in which the cars make journeys or have races or get fixed at the garage.  Instead, he’ll push one car after another along the hall or through his room, then line them up carefully in a row.

He still has odd speech patterns.  He hasn’t worked out pronoun reversal – he still refers to himself as ‘you’ and me as ‘I’ – but a more noticeable feature of his speech is that so much of his speech to us consists of him making the statements he wants us to make or thinks we’re going to make.  So, for example, his way of asking to be picked up is to say "Do you want I to pick you up?"

He doesn’t ask us for food or drink even at times when he will eagerly accept offers of them and clearly was hungry or thirsty.  These sensations clearly affect him in some way – he’ll go into a meltdown if we forget to give him enough to drink – but he never translates that into a request, even though he certainly has the vocabulary to do so and has no problem asking for other things he wants.  It’s as though he can’t translate his body’s signals into a request.

He doesn’t seem to realise that signs of distress in others might indicate a problem to be concerned about.  This of course came in very handy when it came to his inadvertent presence during my labour, and I’m glad he wasn’t distressed by it, but I gather that one would actually expect a child of this age to show some kind of reaction beyond curiosity to the sound of another person screaming in pain.

He’s well above average with numbers – he can count to a hundred, count
backwards, and understands the concept of counting objects, not just
saying numbers in order – and he knows how to switch his computer on
and off, start programmes up and shut them down, and work the ones he
wants to work.  But he shows no interest in potty training or in
playing with other children.

Some of his interests – generally the ones connected with numbers – seem to border on the obsessive.  He used to know every Mr Men book by its number and recite the list to himself (he’s been less into that lately, but he still does know most of them).  If you mention a song he knows, he’ll tell you which number it is on the CD and then want to talk about which song is the next number after that and after that and after that.

He has a predilection for hard objects.  He’s never shown anything beyond fleeting interest in soft toys (believe me, we did try to persuade him when he was going through the separation anxiety phase babies go through in the latter months of the first year – when he wouldn’t let us out of his sight, it would have been very handy for him to view Teddy as an alternative source of comfort in extremis).  But he’ll fall asleep at night clutching his little hand-held light to his cheek.

From what I’ve been reading, some of those signs seem to be quite significant.  Others, of course, are trivial to the point where I feel ridiculous writing them down.  I’m well aware that a lot of this – and maybe all of it – can be explained just by normal variations in development or interests.  But the thing is that autistic spectrum disorder isn’t a diagnosis made on the presence or absence of one single feature.  It’s diagnosed on the basis of a pattern of behaviour.  I think that, when you put all of the above together, Jamie shows enough features of that pattern to make me (and others) suspect that that’s the diagnosis. 

This is not to say that any of it is currently a problem, as such – it isn’t (well, apart from the not asking for food and drink, which certainly can be in our disorganised household.  We’ve had to learn to be pretty on-the-ball about remembering to give him these things at appropriate intervals, since he rarely reminds us.)  Up until recently, we were both perfectly willing to adopt a wait-and-see attitude – after all, if any of this does cause problems in the future, we can do something then.  The reading and the thinking I’ve been doing as a result of Carol raising the issue has now made me think differently.  If Jamie does have ASD, the chances are that that (or, more accurately, society’s attitude to people who are different in some way) will cause him some problems at some point.  If and when that happens, it’s going to save a lot of time and trouble if we have a diagnosis already in place then rather than have to start from scratch and not get one until a few weeks or months later.  So, yes, I do now think that the follow-up to the basic assessment that the HV’s going to do should be to get a paediatric assessment, and then we can all find out whether our very tentative current conclusions are right.

Advertisements

6 Comments

Filed under Here Be Offspring

6 responses to “Ambling to conclusions

  1. beth

    I’m with you in liking to get basic assessments. I don’t expect everything I raise to be an actual concern (or to catch everything that might be a concern). I mean, that’s why they go to medical school, right? (ha, ha, that’s a joke because you are a doctor too)
    Just to muddy the waters a bit, though, my oldest son had some of the more worrisome symptoms you describe. He also never asked for food or drink. He would ask to nurse (he nursed until quite old), but never for food or water. He had very little imaginative play, and what he did was heavy on the action and small on the imagination. He didn’t recognize the distress of others. He had very little interest in other children, beyond his immediate family. He fits very well in descriptions of sensory integration disorders, and had some OT to help with that in his preschool years.
    But it’s hard to say whether he has anything that deserves a diagnosis or just has his own personality. Reading up on SID did help me come up with some ideas of how to approach things, so it was helpful to learn about, even if I’m still unsure how much the label is appropriate. So whether or not Jamie ends up with a ASD diagnosis, learning about it and how he matches up with the description can only help you understand him and how he may be seeing the world.

  2. Eva

    Best wishes with this. More information is better than less. And I’m so glad the baby’s foot is fine!

  3. Sidheag

    I hope the assessment is helpful. I do agree, that picture looks like the label. But, as you say, some bits of it are very trivial, and it could be an unusual development pattern, which will turn out to be without consequences long term, rather than the early signs of something that will always be recognisably ASD. I’m a bit concerned about the labelling thing: if he *does* have ASD, then sure, best to have the diagnosis as early as possible; but if he doesn’t, that label around his neck might be the opposite of helpful. My feeling is that the best outcome (and maybe the most likely too) might be for the specialist to say “well, there are some things here to keep an eye on, but it’s too early for a definite diagnosis; let’s seem him again next year, or earlier if need be”.
    The son of close friends of mine has Asperger’s; it was not suspected while he was at nursery (small, very routine-based nursery, where he was fine) but he had real trouble on starting school (he became violent, out of his confusion). There, he really does need a full-time support person; and he did have a hard time in the first term while they were sorting out the possibilities and the diagnosis. So I do think you’re spot on about getting the assessment done. I just would fight for a number to call for quick access to an expert if necessary, rather than for a definite yes/no, if I were you.

  4. BethR

    My son has never been formally assessed, but he had a number of these signs too. I’m really glad I didn’t know how significant the absence of imaginative play was supposed to be until later, because he almost never did any and what he did do was highly formalized. He also had a lot of obsessions with putting things in order and knowing their numbers, and he did the number-of-the-song-on-the-CD thing too. He was pretty oblivious to the other kids at his day care until he was older. The main difference between him and Jamie from what you’ve said here is that he was quite expressively verbal pretty early. OTOH he had a bunch of apparent sensory issues that caused him some trouble with day-to-day life when he was smaller, which thankfully seem to have abated.
    At five he’s dealing really well with kindergarten without any special assistance and is FAR more social than I would have believed possible when he was younger. We’re taking a wait-and-see approach with his other issues. I think he’s more on the ASD side of neurotypical than the neurotypical side of ASD, if that makes any sense, and somehow it never seemed quite like the moment arrived. If both a caregiver and a health provider had suggested it was time we would have been there in a trice, and even as it is I still wonder if we should have done it – even though he looks pretty “normal” now, I worry that things were harder for him than they needed to be. It’s not necessarily seeking a label that’s important, it’s finding ways to help the child with things that might be harder for him than for the average bear.

  5. Beth R: I think your last sentence nicely sums up the way I’d previously been thinking about it, and the reason why we’ve been in no hurry to get an assessment on a child who, although different in many ways, isn’t having any obvious problems at the moment. However, what I’ve realised on thinking about it further is that the label itself can be a way to help. It can provide reassurance to a child who’s struggling (“No, you’re not stupid – your brain works in a different way, and that means that, although you find some things easier than other people, there are other things that you find harder than other people” or explanation to someone who would otherwise misunderstand the situation (“I know it sometimes looks as though he’s deliberately being difficult, but, in fact, he has some genuine problems with understanding this/doing such-and-such”).
    Of course, that has to be weighed against the drawbacks of a label, as Sidheag says. But I do feel that, with proper care, a label can do more good than harm.
    Glad to know that your little boy is doing well. 😉

  6. Hi, I’ve just read a few posts here for the 1st time, and like it so far!
    I’m surprised that people have mentioned the ‘drawbacks of a label’ or described it as something that would hang ‘around his neck.’ I just don’t see this. It’s good to know what is happening, increased knowledge can only help. A label, if accurate, will point the way to better understanding and accommodations. It can help to connect with others in the same situation, (though wrt autism, there is, as you know, a heck of a lot of utter nonsense out there!)
    I think that it is especially important to know about neurological differences when considering the child’s education. A label can be a signpost to getting the information and help needed.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s