Not sure what to do - 'diagnosis' from strangers. Repeatedly.

[solidgoldbrass]

DS is 8. Today I got chatting to another mum, who said 'He's got Aspergers, hasn't he?' I said I didn't know, we have no official diagnosis, and that he's a little unusual but hey, who isn't? She said that both her sons are on the spectrum and her son (who was with her) had said to her 'That boy's like me, isn't he, Mum?'

I've previously had 'kind' strangers say 'Is he autistic?'. We do have an official DX of 'mild dyspraxia' - his fine motor skills are not brilliant - but as yet his school, who are very good with SN kids, have not actually taken me to one side and suggested we Do Something about any other issues (WRT the dyspraxia, we had a couple of visits to an occupational therapist and a bit of OT in school and in fact his co-ordiation and handwriting etc have improved a lot in the past year or so.

I'm not sure what to do. Whether I should carry on letting DS just be himself (he's clever, very articulate but he is a bit, well, odd, sometimes) or whether I should start trying to get him officially 'labelled'. Both his dad and I are a bit odd, too, though neither of us has any kind of official label to that effect.

I am really flipflopping over this. From reading about everyone else's DC, on the one hand I am thinking 'Well he's not got that or he doesn't do that', and then on the other hand....there are things that are definitely ringing bells. Been looking up the Triad of Impairments as well, and he doesn't have much going on there. He talked early, big vocabulary very articulate. Very kind as well, the sort of kid who notices others' distress and wants to offer comfort. And he's very imaginative (we had a whole menagerie of imaginary friends and still have one or two).

But the noise sensitivity, that's there. Not all the time, but occasionally a particular noise will bother him to the point we have to move away. And the hand-flapping - though sometimss I think that might be behaviour he's learned from his friends who have ASD, because it didn't show up till he had been at school for a while.

So it looks as though we might end up going through all sorts of tests and come away with 'Well he's just a bit wierd, learn to deal with it.' And then we'd be marked down as whiny neurotic parents and him as badly-behaved, so actually we'd be worse off.

Jsut do what you feel is right for you and your ds solidgoldbrass - If you get him checked out the answer will be yes or no and surely that is better than not knowing, wondering and being slightly neurotic about it now.

If I was you what I would do now is read/learn widely around the subject, especially issues as adolescence hits. Also keeping some kind of occasional diary with dates, recording when people say things, things that happen, even your feelings that he doesn't fit the criteria. You could also use it to record conversations had with school.

This will all help if you decide you want a diagnosis in 6 months, a year or 5 years time.

Some great posts on here, especially ilikemysleep as others have said.

Having read your posts over the years SGB I honestly think that he has a huge advantage in that he is not being offered and exposed only to a narrow range of 'normality'. It will hopefully be so deeply entrenched in him that 'different' is ok, fine, fun, great even, that he may never get distressed by some ways people and life can be.

I believe I have (very mildly and undiagnosed so apologies for the annoying cod psychology) AS. But myself and my DM were acutely aware of 'fitting in' and our frequent failure to do so. Both our levels of anxiety and depression were sky high, particularly during adolescence. Other than that we appear very normal and have learnt social skills - we almost over-compensate in our desperation to fit in.

Apart from keeping an eye, can you do some research together about inclusion and talk about some of the stuff his (diagnosed) friends do? Discuss the good, the not so good, things that other (NT) kids have picked on in the past and why that shouldn't happen but sometimes does.

Solid,

re this part of your comment:-

"So it looks as though we might end up going through all sorts of tests and come away with 'Well he's just a bit wierd, learn to deal with it.' And then we'd be marked down as whiny neurotic parents and him as badly-behaved, so actually we'd be worse off".

I have read plenty of scenarios on here but the above has never happened with regards to any child on here who has been under the wing of various professional bods. The ones in my experience who tend to judge the most re a child without a "label" are other parents and schools.

I think you are scared to be honest (understandable really) and using that not to determine anything concrete. You have suspicions now and they will not go away. If your DS is on the spectrum then it is certainly in your interests to determine if that is the case sooner rather than later. He could well become labelled by teachers as "disruptive" and "naughty" if it was subsequently shown he was not coping with the environmnet in school. Secondary school can be bloody difficult for those children if they need extra support but do not have it.

SGB,you wont be classified as 'whiny parents with a quirky ds' if you seek an assessment.You will get a definite yes, there is an issue here, or no ,there is no cause for concern.We also had handflapping as the first symptom that presented itself in yr 4 and caused the school to flag a problem.
Hothead,with ds the anxiety has only become an issue in the past year.He is now 12-there was no sign of this when he was younger.He took his dx initially rather badly, but is now coming to terms with it better and understands that it only really means that he thinks a little differently to other..Maturity is helping a lot actually..

I have an idea. Don't do anything now. Don't even worry about whether to seek assessment or not. Do this:

For 2 months, keep a diary.

Any event which seems a little 'unusual', any reaction your DS has to a noise/smell/texture/whatever. Any comments from associates. Any incidences where your DS says 'I don't understand why people do x'.

Don't try to analyse it, just make the notes.

Then, after 2 months, you will either see that you need to take things further, or that actually, in the grand scheme of things, your DS just has one or two quirks.

Either way, 2 months won't harm at all. Either way, if he has got ASD, that won't go away either. What hopefully will go away, is the anxiety of being at a 'decision crossroads', not sure which way to turn, and worrying that whichever way you turn there is no way back.

I agree with some of the comments here. It's not the label that really matters or that would distinguish him (adversely) from his peers as he gets older, it's his behaviour, which will be the same whether or not you seek a diagnosis.

Your comment about his flogging a conversational topic to death; yes it's pretty common among most 8yos. But they would also be capable of having a reciprocal conversation too, and understanding intuitively when to stop/continue/change the subject/the other person is bored etc.

Fwiw I would certainly seek some help with that kind of rigid or inflexible behaviour, as I suspect that really may make a difference to his ability to make and keep friends as he gets older.

Year four is when the cracks start to show.

Oh yes. When they are nine.

There is something about nine year olds, that is very different to seven and eight year olds. They start to understand that someone is different, and they start to deliberately wind up the children who are easily wound up, and they start to exclude the children who don't fit their mental mole of normal.

Ds1 has asd, and ADHD. Year three was a dream. Year four .... Oh god, I was nearly ready to withdraw him.

Luckily for him, he has a diagnosis, and a statement. I could go into the school and say "you are LEGALLY OBLIGED to prevent him from floundering socially, you have been told by his paediatrician that he is vulnerable, act or face the law."

Currently, sgb, you don't have that legal recourse.

If your school and his peers are as good as you say they are, he may have an easy ride for primary, but this will cause an even bigger shock in secondary. Teenagers are quite capable of being utterly fucking vile to an eleven year old boy who flaps, and if you have no legal recourse to force the school to act, to provide a safe space at break times, to provide additional pastoral support, then you could have school refusal on your hands.

It's your choice, you're his mother and it will be your choice until he's eighteen, but as a parent of a child in year five, let me tell you I am extremely glad I got a diagnosis in year two.

I cannot believe how much easier my second son has found school, despite being a clinger, despite never wanting to go because he doesn't want to be away from me, he GETS social things, he gets his peers, he gets that if someone asks for his money he shouldn't give it to them because he won't get it back, he gets that when the teacher says "children, come and sit down" she means him too.

It's little silly things like that that make his life easier than ds1's, and it's little things like that which mean the sudden loss of a naturally inclusive teacher and kind peers can be devastating to a child who DOESN'T 'get' it.

Ds1 is colossally imaginative - to the point what would happen in the real world is of little relevance! Ds1 is also sensitive to other peoples' facial expressions and feelings - he just doesn't seem able to react appropriately, but will most likely freeze in terror, in a situation where he knows he ought to offer comfort, and he won't necessarily accurately interpret WHAT has caused the person's upset. Ds1 is a great observer of people with a phenomenal memory and wonderful acting/mimicry skills - he can rote learn and make look natural what really does come naturally to others. Ds1, when assessed for autism, was found to come up with some quite surprising and odd interpretations of social situations. He functions incredibly well up to a point. I have always felt that he has incredibly strong traits commonly associated with aspergers (eg mild hypotonia, hypermobility, VERY odd motor planning skills (but due to his superior memory, he can rote learn complex movements and perfect them in a way that doesn't seem to fit brilliantly with dyspraxia), tics, certain sensitivities, a fascination with memorising things like dates of Kings and Queens, or all the Beast Quest books, etc), but the central part of the diagnosis is its weakest point - the symptoms are there, but so mildly that without all the associated symptoms, he really wouldn't merit a diagnosis. I've met people with no diagnosis who are more socially dense than he is. However, he still sticks out like a sore thumb because of all the bits that, apparently, aren't needed for a diagnosis (as if these are unimportant - how stupid can the experts be to just allow them to be interesting side issues???...).

Thanks so much everyone. Lougle, especially: that's a brilliant idea.

Yes please Leonie-that would be very interesting

The not predicting reactions thing is absolutely accurate.

Ds1 used mechano to drill a hole in his bedroom wall so he "could look at you at night, mum."

When asked why he didn't just come and look through the door, he replied "I thought you'd be cross about that"

Totally didn't occur to him I might be cross about him drilling a five centimetre diameter hole in the plaster of his wall.

Solidgoldbrass, my son (negative diagnosis) also had the sensitivities - they have eased as he's got older. I spent hours over several years pouring over websites, ticking boxes on Aspergers Checklists. My DS would tick many boxes and end up borderline. There are also some theory of mind questions out there but he didn't have a problem with these. Eventually, after a school EP said that he was displaying many of the characteristics of Aspergers, I decided to bite the bullet and pay to see someone - it was the best thing I've ever done and I wish I'd done it earlier.

Not saying this necessary is relevant to your DS but this book might be of interest:

Misdiagnosis and Dual Diagnoses of Gifted Children and Adults: ADHD, Bipolar, Ocd, Asperger's, Depression, and Other Disorders by James T Webb.

Solidgoldbrass....I am not sure if this will be helpful or just scary but...2things. I am an autism specialist psychologist, and I have a son on the spectrum, and I did not realise for certain until I saw his ADOS. I saw features and suspected from about age 3, but I think I forgot that I saw him at his most comfortable and reciprocal with the people he trusts most, and so every time he did something kind or cuddled or whatever, I put a tick in my mental 'not autistic' tally...and reassured myself. I forgot that I wasn't seeing him unsupported, anxious, worried, interacting with adults at school. My son is not very rigid or very anxious and doesn't find change very hard. But he has immense problems with reciprocal communication, and I scaffold him so well and so naturally that it wasn't until I saw him floundering in the ADOS that I realised how blind I had been. Of all the ADOS I have taken part in (it's part of the autism assessment) I would say my son's reciprocity would be in the two worst. And I was too close to him to see it.

The second thing I wanted to say is that if strangers are 'diagnosing' your son...well, that has never happened to me, and it makes me think his issues are perhaps more obvious than you realise? Could you, like me, be too close to him to see?

I'm glad my other experience resonates with other posters. Your boy's imaginary friends (common in aspies) suggest that he may have some difficulties with imagination in terms of 'unusual in intensity or duration' which we use as diagnosticians. Apart from the 'arrogant deniers' I mention in my first post, another of Attwoods categories of Aspie are the 'escape into imagination' cluster. I now have all the Brontes diagnosed! (they had an entire imaginary world at Haworth).

Best of luck whateverxchoices you make.