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.

[solidgoldbrass]

Ah, no, we cope just fine and he is happy at school, has friends (most of whom are autistic - officially so but lovely kids). His teachers always say nice things about him. We did recently have a problem with bullying but the school were terrific about that and it's all been sorted.

On balance I would really prefer not to have him labelled; I'm generally not keen on the way 'difference' is being medicalised these days.

BTW re Facebook, PM me if you want and I will tell you where I am

[amistillsexy]

It was strangers' comments that led me to research ASD and subsequently request assessment for DS1. However, he was 4, had been behaving in a very unpredictable and violent way for 18 months, and I was at my wit's end.

It turned out he had ASD and was diagnosed just before his 6th birthday. The Dx has helped him because it meant that he was accepted into a school with ASD provision, when the local school excluded him for being ''naughty'.

He is now happy and succeding, and I'd love to find those strangers and thank them. Without their input, I would have spent much longer floundering and not knowing how to deal with DS's behaviours.

You sound as though your DS is happy and succeding without the Dx, but do you think there will come a time when the Dx might be of use (in 2ndary school, perhaps?). If so, getting it now will save alot of heartache if things do go wrong.

[solidgoldbrass]

Yes, I think what's worrying me is: are things going to get worse as he gets older? We don't have any issues with violence or 'naughtiness' at school but it seems to me sometimes that the stuff that was percieved as cute and amusing when he was littler is going to be seen as less so when he's not an infant but a big strapping lad.

[Lougle]

Mmm...you have choices. I remember past threads, I think, also.

I would say, that knowledge is power. There is always the option to choose not to accept a diagnosis. That is, you could see a paediatrician, who may well say 'I think your DS meets enough of the criteria for an ASD diagnosis.', and at that point you can say 'well thanks very much, we'll think about it and get back to you.'

My only concern is that the older the child is, the harder statements are to come by, so if you have any doubts as to how well he will cope in later years, you should get cracking. Having said that, Statements will soon be replaced, so that's a consideration also.

[coff33pot]

If he is happy and content with his lot and he is coping then I would leave it but keep it an open mind towards his last year of Primary and see how mature he is and how well he copes with added learning pressures of SATS etc.

I did chase a dx but circumstances were different in that DS was not coping at all and the school were not the greatest in helping (with or without dx as it turned out) so he needed the dx to access the correct support.

[solidgoldbrass]

I think I'll settle for 'watchful waiting' just now. Maybe next parents' evening I will ask his teachers if they have any concerns specifically re ASD.

I would also say that the strangers commenting on his behaviour are never being negative/angry/insulting, and that the behaviour that seems to make them want to comment is not bad behaviour (ie he's not violent or destructive or in-your-face annoying) just.... Not Quite What Other Kids Do eg there's jumping, hand-flapping, scrabbling at his own legs and feet, and picking a conversational topic and flogging it to death. (THe last one's kind of the least worrying, to me, anyway as it seems like something most kids do some of the time).

[ilikemysleep]

My two pennyworth... My son was not really struggling in school in as much as he was and is doing very well academically (he just passed his eleven plus yesterday! ) and he had a small and loyal group of friends that he still has. At home he was melting down a bit but not to the extent of making life unbearable. We pursued diagnosis so help my dh understand him better and to get mil off my back with her criticism of his 'rudeness'.

What we didn't really expect, and what has made all the difference in the world, was ds's own reaction to a (positively phrased in terms of neuro difference, not disorder) label. I don't think we had fully understood how clearly he had perceived his differences and how stressful this was for him. It was literally like a weight lifted from him, he visibly relaxed and has never been quite as stressed since. He is also less defensive and more open to suggestions for developing his skills 'as an aspie'. I don't know if you have read Attwood's book but if so, all the (undiagnosed) aspies in my family tend to be 'arrogant deniers', putting their social difficulties down to superior intellect and assuming the rest of the world is 'wrong', not them. This tends to cause them a lot of upset and fractured relationships, especially in the workplace where they start well but piss people off fast, and they are constantly bewildered as to why this keeps happening. I didn't want this for my son, I wanted him to know himself and 'buy empathy' by using full or partial disclosure ('I can be a bit tactless, but I don't mean to be rude, please let me know if I say something that upsets you'). I really think this can only be achieved through him knowing who he is.

[TheLightPassenger]

I am in a similarish position with my DS - with the difference that he did go down the diagnosis procedure with him, and came out with a not quite diagnosis of language delay with subtle social communication difficulties. Which I think means autistic traits.

As school is going well (small, caring, works hard for all children etc) I am going for the justa/coffee option - if things get more hairy in run up to secondary, shell out for a quick private assessment.

From a pragmatic point of view - as he already has a dyspraxia diagnosis, would that suffice for any help/support needed? I likemysleep makes a v good point re:possible reassurance of a diagnosis - but then again, the dyspraxia diagnosis may suffice for that anyway. There does seem to be a more active support group culture for parents of kids on the spectrum and/or online discussion amongst adults on the spectrum that doesn't seem to be quite around as much for other diagnoses.

[TheLightPassenger]

btw he went through the diagnosis procedure at 4, not recently, when the language delay was the most obvious problem.

[WofflingOn]

Ilikemysleep, that's exactly what happened with DS when he got his dx at 9.
Although he was still explosive and violent as a response to being overloaded, he was much more willing to explore ways of developing strategies to cope and identifying triggers himself. The dx enabled him to stay in MS, the secondary school were fantastic at supporting him after a tricky first year and he is comfortable and confident with his Aspie label at 17.
DH was an 'arrogant denier' for years, and without a dx. Falling in love, having a family were the triggers for him to learn compromise and exploring the less flexible and more odd elements of his personality. He'd fitted in with high-level academia for so long, being opinionated and clever was the norm.

[AttilaTheMeerkat]

I see a "label" purely as a signpost to getting more help and in many cases a diagnosis can open doors that can otherwise remain firmly closed. Also you would not get a diagnosis immediately; there's often many hoops to jump through and you can wait months to actually see someone like a developmental paediatrician.

Also many teachers are simply not skilled enough to actually recognise any child who could be on the ASD spectrum so you may not receive much if any more info at a parents evening.

"Watchful waiting" may suffice for the moment but I would keep a very close eye indeed on how things are particularly with regards to school because things do change there and rapidly so. I know of children who have fallen apart at secondary school simply because their additional support needs have not been met.

[bochead]

The behavior of my ex is perfectly described by your description Ilikemysleep - very interesting. Except that he does have a diagnosis - perhaps he never came to terms with it.

It's interesting too what you say about the relative help available with differing diagnosis. The local office politics meant that an ASD diagnosis was most valuable for us, but from a purely objective pov I think often that his dyspraxia (no formal diagnosis though mentioned in various reports) is actually the bigger daily disability for my DS. I'm not even sure dyspraxia is a recognised condition in my LA/PCT iyswim - it's all a bit "dark ages" round here sometimes.

I've always seen any label simply as a way of accessing support & the one DS currently has is the one he needed to get any sort of help or compassion at school. I simply chased the label that would tick the box the jobsworths "needed" to allow DS to access support. To have asked for more than one would just have muddied the waters in a situation where the authorities were already playing really dirty.

[HeinousHecate]

I think there's no harm in an assessment. If he's not having problems and doesn't need support or access to services and he's happy, then there's no need for one, but it's important to be aware that that can change at any moment. And if you wait until he is unhappy or there is a problem with learning, or you think he needs some support to get an assessment (because you need the diagnosis to access the services) - then that doesn't happen overnight, it's a long process and he is left in whatever situation, waiting for months and months and months.

As others say - diagnosis = support.

[bochead]

True on the potential time lag issue. It took 4 fooking years for DS to get a diagnosis on the NHS. He just fell apart when he started reception and everyone KNEW there were major issues (2 failed primary school placements, a spell in a behavioral unit, and a 3rd primary school that couldn't cope by age 6 kinda gave the game away lol!). I've heard of kids going to pieces in a similar way upon entering secondary and it's a special kind of hell I couldn't wish on anyone.

[HeinousHecate]

Oh god yes, the transition from primary to secondary can be brutal. It's a real shock to them. Mine have struggled quite a bit.

[KOKOagainandagain]

The process is lengthy and is best not delayed as the old adage that 'all children do that sometimes' will by the passage of time soon no longer be the case. Yoyr DS is 8 already. If his 'odd' behaviour is a manifestation of neurological difference it will not simply recede but may have an increasing effect of his ability to form and maintain relationships. His incessant talking at you is something that you tolerate at present, but others may well be less tolerant and it may cause problems for him with friends and teachers alike. And can you always show the same tolerance, in all circumstances, no matter what else is happening? Believe me, its gets rather wearing after years and years of pretending to listen listening to a monologue on someone else's obsessional interest! Even if you could be 100% consistent, would this be the right thing to do? It may be that he needs implicit, taken-for-granted social rules to be made explicit - eg social skills, social stories etc. At worst as time passes 'watchful waiting' may negatively impact on his self-esteem as he may assume that it is him personally rather than what is experienced as rude behaviour (rather than naughtiness per se) that others shun and do not like.

I speak as the mother of a DS who has a complex neurodevelopmental disorder with 7 different elements (including ASD, SpLD and APD) who demonstrates how a child whom it is difficult to label in a way that translates to adequate educational provision can end up without a diagnosis until the end of primary school and unable to attend mainstream secondary.

[AlwaysInWonder]

SGB I have just had my first meeting with CAMHS re ds and possible AS (or rather ASD as AS will not exist anymore by 2013).
The reason I am pursuing the dx is DH.

DH has undiagnosed AS. He did the AQ test, came out way above the limit. All the bits he read about AS made him say 'Yes, this is me'. And he struggled. He struggled all his life with in social settings, to communicate well with people etc... Knowing where this was coming from helped him (and me !) a lot. It also gave him the understanding that he wasn't 'weird' or 'strange' (this is how he saw himself :(), ie he was 'bad' or 'not good enough'. And it helped me to know the reason for some of his behaviours and to misinterpreted them.
With ds, I am finding it extremely difficult to actually see the extend of his struggles. As ilikemysleep pointed out, I think the difficulties he has are much bigger than we think because they don't always come out as 'difficult behaviours that are really an issue to handle'.
So for me the diagnosis isn't about reaching as much help as possible. Nor is it about a label. Labels don't have any meanings to me tbh. But it is a way to 1- recognize he is struggling, 2- tell him there is nothing wrong about him and much more importantly, 3- make him aware of his difficulties and be more open to accept support/guidance.

[AlwaysInWonder]

Sorry should have said, it isn't about accessing strong support atm because he is sort of coping.
But secondary school is a worrying step for me and he might need support then. Just as he might need support later on in life (as a partner/husband/father).

[creamteas]

With my DC, I found that as they got older the gap between them and their peers got wider and traits that were 'odd' or 'quirky' at 8 became increasingly difficult for them by age 11.

I was also reluctant to go down the diagnosis route and felt it was unnecessary because they were coping. But when they did need more support, it did not happen quick enough as we ended up on such long waiting lists for all the assessments. If I knew then how long it would all take, I would have sought a dx much sooner.