Diagnosis or not?

[NoIdeaForAName]

ds2 is 7yo and I have always thought he was 'weird' as he was doing things that other children were not doing (even as 2yo!).
There are quite a few things going on that make me think about AS, including the social issues, no friends, taking things very literally....

But on the whole, he is a happy boy, isn't an issue at school at all. He has some times at home where he is getting completely overwhelmed but this has happened only once at school (just when going in and the teacher was clearly wondering what on earth was going on). And we probably have learnt what the triggers are and know how to handle them.

All that to say that, if there is some AS, it is mild.

So I am wondering if it is worth trying and get a diagnosis. Is that not just for the sake of it (I don't think he would be getting any support at school)?
Part of me wants to carry on as we are and bury my head in the sand. And then today, he went in complete meltdown because I couldn't understand what he was talking about and all I could see was a child who was lost and overwhelmed.
So what is a diagnosis going top give us that we don't already have/do?

Reread and was actually wondering, is there such a thing as mild AS?

To my mind AS can be debilitating in its own right.

Schools generally do not pick up on children with additional support needs; the teachers are simply not trained enough. In your case school likely do not recognise that he could well be on the autistic spectrum. Also children with additional needs who conform to school rules and not cause trouble in class (bottling up all the frustrations of the school day and having to work out unwritten social stuff and social cues between peers can lead to meltdowns at home as it is safe) often go unnoticed in a class of 30.

I would pursue a diagnosis as it could well help him when he goes into secondary school. For instance all of the secondary school children I know of who have AS all have statements (these can address social and communication difficulties). A GP should refer you to a developmental paediatrician. I look at a diagnosis purely as a signpost to getting more help; it can open doors that otherwise remain closed. Knowing why rather than not knowing is more preferable to my mind and knowledge equals power.

I think in order to get a diagnosis the condition needs to be affecting daily life on a very regular basis.

If you have put coping strategies in place, what would happen if you removed them? Would he cope in situations such as school residential trips, a change of school or a friends sleepover party??

If he wouldnt cope then maybe he will need a dx to help him access support as he gets older and needs to spend more time away from his support network and safe haven [home].

I know he coped with a change of school (but then we change school because his teacher/school was appalling so it was bound to be better!). It took him about 1.5 year to start playing with other children though.

I think sleep over etc... would be OK.

It's the social side (ie interacting with other people), interpreting situations that is an issue. Coping with a change of routine seems to be OK.

Not having these coping strategies for his 'quirks' would results in meltdown at home. At school, he just goes quiet..... So on the outside, he is coping but on the inside i am not so sure iyswim?

IME children with AS/HFA are often able to learn to mask their difficulties, especially at school.

The result of this is that they have to vent somewhere and it is usually at home.

My Dd3[9]who has ASD and is high functioning, worked so hard at hiding her issues at her old school that she was verging on depression by the time we moved her. We were very worried about her, all her sparkle had gone and she just wanted to sit by me on the settee at home all the time.

She has only just begun to be able to ask for help at school and is becoming much more relaxed and condfident now that there are adults who really understand her.

Social stuff affects Dd3 a lot too, she struggles to maintain friendships, conversation sharing and has no idea when she is boring people with her monologues about whatever interests her at that moment.

If you are worried, why not keep a diary of his issues, what causes them and how you deal with them and then go to your GP and ask for a referral to a developmental paed.

Good luck

Note all your concerns down. Observe your DS and make a diary of events as such when a meltdown occurs, why and how it was dealt with. This can help spot any regular triggers. Note any school worries he comes out with too because if he is the type of child to shy back and play invisible when anxious the schools are less likely to notice anything wrong so it will be up to you to meet them to point out and discuss any concerns on his behalf.

It can also perhaps help you to decide wether it would be sensible to seek a diagnosis or not? :)

Should you decide to seek a dx and get one it is up to you who you disclose it to. Senior school has added pressures both in learning and peer relationships. They are expected to be more assertive, mature and independent then so maybe that is when it could be advantagous to have a dx to get him assistance x

ooops! cross posted with ineed on the diary advice

Social stuff affects Dd3 a lot too, she struggles to maintain friendships, conversation sharing and has no idea when she is boring people with her monologues about whatever interests her at that moment.

That could actually describe very well!

Thanks for the idea of the diary. I think I need that to convince myself it's not just in my head. And it also means I can be much clearer when I go and see the GP.

Can you tell me what sort of support they can get when in secondary school?

The support can vary massively depending on the child's needs. It can be anything from 1 to 1 with a statement to just having a named adult they can go to if they are having difficulties or anything in between. Or nothing if the school is rubbish.

I am hoping that Dd3 will have some kind of support network when she goes with some named adults who know about her issues who will be available whenever she needs them. She also has a passport which tells people all about her, what she is good at and what she finds difficult and what she needs to do if she is feeling anxious. She will update this before she goes to secondary and it will go with her.

I know the school she will go to has a safe haven where the SN children can go at break and lunchtime. They also run weekly social skills groups. They also do a really good transition and have very close links with her primary.

When looking at secondary schools I would recommend meeting the SENCO and getting a feel for what the SN provision is like.

Good luck

I see. I had in mind that they could offer some sort of support similar to TA in primary but that's it.
A named adult to go to sounds a good idea. And the safe heaven at lunch time...

I can see it Could open up for other type of support I didn't even know existed.

Thanks for that :)

With secondary schools you have the problem that the teachers don't really know the DC very well, if they have them for just a couple of lessons a week. My DS's secondary has an electronic passport that comes up automatically on each teacher's laptop when they take the lesson register, (which they do for every lesson.) It has information about the DC's needs, their difficulties, what extra help they may need. Eg. ASD (or AS.) Please address DC by name when giving out general instructions, as he won't assume you mean him; please ensure you check he has written his homework in his diary. (Or it won't get done!) They may get an 'escape' card which they can show if getting overwhelmed and can then just leave the class to go to a safe area.

They also have a lunchtime and breaktime club in 'Learning Skills' which keeps my DS safe in those tricky unsupervised times. They also have a homework club after school, run by TAs who help the DC get their homework done. Can be really useful if your DS sees school as school and home as home. This provision doesn't necessarily need a DX, just school action or school action plus, but a DX definitely helps.

Any DX can be kept confidential, also. You don't have to disclose it if you don't want to, which you may not if your DS is only mildly affected. How he's affected may become more noticeable as he gets older, unfortunately. It's not easy getting a DX, the procedure can take a long time, so I would be starting sooner rather than later.

We are talking about a good year to get a diagnosis aren't we?

It actually really helps to now better what is available.

I think you are right too re things getting more noticeable. There are things that we expect children not to know when they are little but to have 'got' as they grow up and ds2 doesn't seem to be learning these 'rules'.
I will also probably get more of an issue as he gets older.

I suppose too that a dx would also be good to explain his behaviour to him and to others. I am very weary about labels though. Sometimes, they put people into a box and it can be difficult to get out of them.

I, personally, prefer the 'ASD' label to the 'naughty' 'lazy' 'difficult' or 'weird' labels that they may be given instead. I do know what you mean about people seeing an Aspegers label and falling into the trap of stereotyping your DS's needs, but at least they are seeing him as needing support rather than merely being poorly disciplined.

A "label" is really only detrimental to a child IMO when you allow it to be. If you use the label to define your child, then you are effectively placing them in a box yourself. A label should really only be a tool to help you access support.

Yes I meant wary and not weary.....

I see what you mean about preferring ASD to lazy and difficult. 'Lazy' was the word used by his teacher in reception (along a lot of other words...). :(
'Difficult' and 'weird' I will have been guilty to use these, especially when he was little and I was thrown out by his behaviours ....

Having changed school and having gone away from said dreadful teacher, ds hasn't been put into a box like this. Quite the contrary actually. He is quiet and I have been told last year by the teacher she wishes 'all the children in the class were like ds2' ie do their work and be concentrated that they could ignore children playing next to them.

No, the labelling I am thinking about is the reaction you can have when you say that your child has AS. When people then just assume you have a non speaking, incapable to lead a normal life child iyswim?
At school... a good friend of mine has a child who has been diagnosed with ASD. The 'label' hasn't been of a lot of help for her dc. Or at least not until she found another school for her. There has been a few instances where the staff at school has been using force to make her do things she didn't want to do (such as going back in class) and she came back home with bruises where they had held her...
In her case, ASD had been associated with 'difficult' and 'impossible to handle' child and also 'can not comprehend what you are telling her' child :(

Note: I have to say since she moved school, things are much much better. And I can see that now the label is getting useful as she is able to get the correct help for her dd.

but in your friends case the problem wasnt the label. it was the staff at the school.