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.

Don't.mind.at.all.Mary(excuse.robot.posting,DS.killed.the.space.bar.on.the.laptop)
I.have.made.an.appointment.with.school.SENCO,decided.better.to.start.now.while.he's.doing.OK.than.hit.crisis.and.have.to.wait.months.for.an.appointment.

Yep good idea.

We are on the road again. ds2 (at the ripe old age of 14) is now going for assessment for ADHD. We have raised concerns before, but told we are worrying about nothing. Now (finally) they have realised he isn't coping.

It's horrible seeing your 14 year old, 5.10, tough, rugby-playing son break down crying in front of a couple of teachers because he is in trouble yet again .

So.grateful.to.all.on.this.thread.and.toMN.for.existing.Otherwise.I.think.I.might.have.left.DS.to.struggle.because,you.know,'MY.child.doesn't.have.a.problem...'

SGB, you may well look back on this thread in a few months time and chuckle a bit. It's quite possible that soon you'll be telling other people to just get their child checked out, so that they don't struggle I think we've all been there, we're just a few months/years on from you

Oh yes, queen of denial, I was!

I am sorely ashamed when I look at posts from 3 years ago saying "oh I'm not worried about ds any more because he pointed!"

SGB I love the typing - it's like you're channelling will.i.am

Well done on the first step :)

Another one here who thought because DS was ok with me then he was ok everywhere and it was a case of no one understood him that was all

Me too, and I'm a teacher who ought to have known better! But my DS was fab at home, it was school that was a disaster. Didn't realise til I analysed and unpicked that my home is structured, predictable, organised and calm, no real stressers.
When he did kick off, I had years of experience at defusing and problem-solving at my figertips, I didn't realise either that I was masking his needs because I anticipated and was proactive.
School on the other hand was not. He got his dx at 9.

I was cleopatra, queen of denial

Me too Woffling. I am trained in special needs but never picked up on ds[hblush].He was 9 also when school flagged it.Actually,a very astute teacher had mentioned to us when ds was 7 that she felt he may be presenting with signs of dyspraxia but we thought'nah,hes just a bit forgetful etc' [hsad].
Fast forward to 10 and he had a diagnosis of As and probable Dyspraxia.
Also,dh felt at the time that we should just leave it for a while rather than pursue a diagnosis immediately, but I insisted we go and get him assessed privately.So glad we did now as definitely his issues have become much more pronounced as he has gotten older.12 now and secondary school is certainly a different ballgame.
As someone else said,I also think,more and more,that my dh and possibly my dd(15) are also on the spectrum in differing ways-not Aspergers but just spectrummy[hhmm].

BIt of a grim day today. Went out with a mate and her DDs; older DD diagnosed as 'slightly' autistic. She and DS seemed to go all out to make each other behave worse, and yet they were so similar in their unreasonableness.

It's like a bucket of cold water, every time, at first. Remember, though, he's no different from your perfect boy you first posted about. You are just starting to piece together why your perfect boy sometimes seems to find situations tricky.

SolidGoldSpaceBar, I hear ya about the similar friend! My dd (7yo ?asd) had a play date in the summer, these girls are unbelievably similar, I could have cried for joy to find someone with a girls similar to mine (the other mum said the same thing)! The two of them were running around like crazy at home, would not 'settle to' anything, just kept motoring on, sort of playing superficially, dressing up, starting something, dressing up again, bouncing on the trampoline, dressing up again.... blah blah blah.....

Then, they had a second play date: disaster! They stayed with the dressing up and were both totally inflexible and stubborn about who would wear what etc. etc. etc. totally unable to even start to resolve the (many) disputes. It ended up with them not speaking to each other, then fighting in the car on the way home and not saying goodbye to each other. I decided it is a toxic mix and am not keen to repeat the experience!!!!!!!!! Arrrgghhhhh........ you have my sympathies. Chalk it up to experience!

Handywoman x

Maryz

So true about seeing it everywhere. I was happily in denial until recently and now I am obsessing about it and it is driving me mad!! As a result of her SaLT report I have stopped seeing dd's behaviour through a prism of language disorder and am now seeing everything through a prism of ASD.

I have to wait until July for assessment (although going back for review in Feb) and I am going to drive myself insane if I carry on like this

What to do to stop driving myself mad. Anyone?

Sadface Handy x

I went through a stage (lasting years) of absoulte denial - even a friend shared her massive folders and talked about the diagnostic route she had taken for her son - at the time I couldn't understand why she thought it so relevent when her son had an ASD and mine didn't! Then when I twigged I felt as if bereaved and couldnt stop crying. By the time we had the assessments done it was confirming what I already knew. Don't wait for confirmation but act as if it is the case now.

I would say,Handywoman,if at all possible try and get a private assessment.Ours cost a few hundred pounds 2 yrs ago and was well worth the money.It is ridiculous to expect you to wait until july.At least then you can begin to put in place the correct support for your dd.
Good luck whatever you decide.

Hi can I join in? This week a stranger 'diagnosed' my son (a waiter we see fairly regularly in a cafe). He is 4. Stoney faced and won't interact. He's had a variety of medical and behavioural issues since birth really but we went for an assessment with a paediatrician and a child development team and we were discharged. They even went to observe him at nursery.

Feel so upset and embarrassed about the cafe incident. What should i do?

Was your initial assessment a year or two back? Because sometimes these things don't show up at first, it's more noticable as the child gets older.

Why were you embarrassed? Was the waiter making an observation, as assumption or being nasty and critical? Did he say 'Is your DS on the spectrum?'
What should you do about it? In what sense?
You could ignore the comment, think about why it was made, complain to the management, tell the waiter to sod off...

Thanks SG. assessment was 18months ago or so. We got a report from our visit to the assessment place... "evidence of literal thinking", "directive behaviour", "lack of facial expression" etc.

When they went to observe him at nursery he was playing very appropriately with his peers. This is actually quite typical of him, he behaves very differently in differently settings.

The waiter not a native English speaking so perhaps was a bit socially clumsy! But basically he was asking in a 'caring' way what was wrong with my son. I was embarrassed because I hadn't realised it was so obvious to other people. also sad because I know it is true. I sort of fobbed it off. What on earth could I say?

I had actually been feeling more optimistic as school has been going very well (reception) but i am so worried about his future.