Advice pls - Is a Diagnosis Worth It in Mild Cases?

[mistybluehills]

Please forgive me if I don't use all the correct terms, I have been lurking for a while, but not plucked up courage to post until now.

Have long suspected DS1 (4.5 just started reception p/t) has HFA (and possible ADHD thrown in). We seem to have good and bad phases and whenever we are in a bad phase I wonder if DS1 would benefit from a diagnosis (feel guilty for burying head in the sand previously ). Then it passes and I think we are best managing it ourselves.

After reading much about the length of time it takes to get a diagnosis (and then seeing what little is often done to support people) I am left wondering whether it is even worth getting a diagnosis at all.

It was much easier for me to prop him up socially and explain emotions etc. to him as a pre-schooler. Now that DS1 has started in reception at a new school, do I inform the teachers of my suspicions or wait for the teachers to initiate it if and when they notice a problem? I haven't spoken to the new teacher at all yet. We are having a major bad phase at home since he started school part-time.

I am really worried about doing the wrong thing and want him to have a 'normal' school experience. He comes over as happy and clever, but also a bit odd and disruptive. He is so borderline that all of his grandparents think he is just a normal 'geek' who is clever and a bit obsessive.

FWIW the problem behaviours are obsessive and repetitive play, not listening or responding to direct questions, talking at people but not replying, not understanding social rules (but is learning them by memory), very limited diet, superb memory, really high energy levels, trouble getting off to sleep (rocks to sleep), sensitivity to smell and some lights.

I would really appreciate and advice, experiences or suggestions at all .

I would say the school needs to be told if he needs extra support or if he would risk getting into trouble for his behaviour.

Remember that if the school have not been told anything to the contrary, they will have to assume that he is NT, and therefore discipline him for anything NT children would be disciplined for: not responding to the teacher, failing to observe social rules, difficulty in sitting still. This may not be a major problem in Reception where expectations are not high anyway, but could be a real problem later on. Behaviour that would seem quirky and annoying at home can often not be tolerated in a class of 30 children unless there is a real reason for it.

Once they have been told, they do have a duty to take SN into account when dealing with any problems that may arise: they are not allowed to punish or expel a child for bad behaviour caused by SN, unless they can be shown to have made reasonable adjustment to help him overcome them.

So really it depends on how you think he would cope with school unsupported. And support doesn't have to mean 1:1 or anything that costs money: it can just mean the teacher remembering that he needs a slightly different approach to things.

Thanks, that helps a lot.

We have our first parents evening on 20th October. Would that be a good time to raise it with the teacher, or should I ask for a quick word sooner?

Also what is the best place to start with getting a diagnosis - via the teacher/school? Or do I have to go to the GP?

For what it is worth I would ask for a referral from your GP because once he is "in the system" even if a diagnosis isn't forthcoming immediately at least his progress would be monitored. We got a diagnosis for DS at 12 but had been through years (at Junior School- Infants was OK) of being treated as inadequate parents because he didn't conform.

I would talk to the teacher as soon as possible. You need to get some feedback on how he is at school and whether he is finding things difficult and if the teacher believes he may need support.

I have found the support we have had for DS fantastic since getting a diagnosis (we were lucky as his pre-school were hugely supportive from the moment we first spoke about concerns).

My DS has HFA and sometimes he can seen so mildly affected. But then I see him in structured situations or when we need him to do something in particular and I realise just how much support he needs. Up to the age of 4 most children are pretty random with moods and disruption but a classroom environment really seems to highlight the differences in my DS.

Anyway, if it can be of help to your DS, then go for any support you can get.

I don't know Misty. I think everyone has their own reasons.I also don't think anyone can tell you the answer to this one.

You would have to be around my boy a bit to notice anything about him (lol.. or know what you are looking for!...i doubt he would get past many people on this board )
Are you happy with the labels he is getting now? I remember i was terrified of a label...but then realised he was getting them any way.'Obsessive'...'disruptive'...both sound a bit negative.You may find as he gets older this will become a longer list at school. For me it was about getting the right label for my boy as much as anything.
He was getting these labels: 'odd' 'geek' 'dreamy' 'weird''lazy' 'boy genius'(he isn't at all btw..they would just see flashes of his obsessive interest in facts and think they had a secret boy genius on their hands )'withdrawn''shy'.

What about when your boy has supply teachers or goes to clubs or has more than one teacher possibly higher up in the school? or when he goes to secondary school and you can't explain it to every teacher he comes into contact with?
I did it because he was starting to question it too...he was starting to realise he was different and i could see it becoming a negative thing...something he was beginning to turn in on himself. I wanted it in a box as a separate thing...'you do this because you have this'...not 'you do this because you are a bad person'.Does that make sense?.

I see it as protection for him. It is a signpost, a flag for the people around him who would perhaps normally make a swift judgement about the way he presents himself.

He gets help too...as a result of the dx.Stupidly , I hadn't really thought about that! . I also got help...access to courses..info about resources..support.

It took us a long time to get the dx...mainly because not many others could see it!.When he came to do the tests and assessment..it was a real insight into how much firmly on the spectrum he was. I think he presents as far more NT than his mind actually is. He has learnt to blend in a lot (he's had a few hard knocks along the way...i guess he's had to )
I shudder to think how he would have coped at secondary school without the dx. I remember an ed psych telling me that when they tested him with facial expressions, he repeatedly could not recognise anger..he saw it as 'surprised'.Little things like this really concerned her with the move to secondary school.

He's the same boy... He's 13 now and in year 9...bright,funny,kind,loyal,clever...all good labels in his reports

Just to add. Ds has dx of hfa /aspergers and dyspraxia.No statement but has funding for 15 hours support a week.

What great advice, thanks to you all so far. How complicated this all is - hard to make decisions when you are so close to the situation. I really do appreciate the support.

Ds has dx of HFA. On school action plus, we have been told he'll cope with primary but not secondary. I'm glad we have a dx, his having a bit of SALT and sociaal interaction sessions at school (although know absolutely no details about them). And hopefully give him more understanding.

Definately try to get a dx. Talk to your GP and ask to be referred to a pead.

Firstly getting a dx doesn't have to be at all hard. It took us most of a year becasue they wanted to see him twice over 6 months etc, but it wasn't in anyway hard.

Secondly, we have had a lot of support from school as a result of the dx. Plus a little bit of OT. Plus support from forums like this....

Thirdly, he might really appreciate the dx - especially as he gets older. Then you can explain why he finds X hard or whatever.

Fourthly, if he gets a dx you don't have to share it with anyone you don't want to.

Fithly, (sorry) - he doesn't sound any more mild than my son. Sounds like he has quite a few diff problems. And he could be getting a lot more help, from you, school, and the NHS then he is getting.

If he's having problems now, at 4.5, then I think a diagnosis is definitely worth pursuing. My DS1 (6, ASD/ADHD) was probably at his easiest and calmest at that age, then BAM!, he hit 5 and life got harder and harder for him. I was one of those mums that starlight mentioned, who thought he was just a mild case and probably not even autistic at all when he was diagnosed aged 3, so I was actually quite shocked when the diagnosis came through. We get too used to this being our normality and end up with no idea of how different our life is to that of a parent of an NT kid.

So, given the difficulty of obtaining and diagnosis in some areas, I would see it as insurance for the future. If nothing else, en route, you may actually get a clearer picture of his strengths and weaknesses and how he generally ticks.

Hi Misty,

I would seek a dx (it will make both yours and his life easier) and just as importantly see this as a signpost to getting more help for him. A dx can open doors that could well reamin closed to you.

Many teachers won't notice anything amiss; they are rarely if ever trained in SEN of any type.

You are truly your child's best and only advocate here.

Justsmileandwave - if you happen to be reading this do seriously consider applying for a Statement sooner rather than later and certainly do not leave this till he hits Y7 and secondary school. SA plus to my mind is truly not worth the paper its written on.

I would go for a dx. Both of mine with HFA/AS can go through relatively long periods with no real issues but things can also go very wrong very quickly for them. Having the dx means that the school know where the behaviour/problems are coming from.

I think troutpout is spot on with the right label. The truth is that every human being coming into contact with other human being gets labelled one way or another. And even more so in a situation where they are put in a room with a large group of their peers. So it's a question what label you think he would get and how it would affect him.

I would also agree that pursuing a DX is probably better than not (and I am another with a 'mild' ASD child ). Like yours, he comes across as happy and just a bit geeky! And it is a tricky one, deciding whether to pursue (or in our case accept, we didn't actively pursue, school did) DX when you feel your child could kind of go one way or another.

My DS1 was DXd just before his 5th birthday (he is now 6.4) and just to put in context his main issues at school listening/concentrating difficulties, poor fine motor skills and some social gawkiness. Like dinosaur's DC he is very borderline - the description of hovering around where the autistic spectrum 'blends' into neurotypicality (is that a word?!) is exactly DS1. He could either pass for an NT child with ASD traits, or an ASD child with plenty of NT traits! And like troutpout we were nervous about accepting a 'label'.

But a year or so down the line I see the DX now as very much 'protection' for DS1 in the world of school. It's a bit like his school uniform - if he didn't have it for school he'd be in trouble, but at home it just kind of exists in the background (DS only really has difficulties at school). At home we are of course aware of the DX, it's there, but doesn't really have any impact on how we are as a family; none of his grandparents have been told about his DX, for example, and for the moment we see no need for them to know. There would be no point in my applying for DLA because at home he does not require (and I would be absolutely unable to prove that he requires) any more care than a typical six year old, though I am aware this could change as he gets older.

BUT there is point in having the DX for school. The DX is the currency that buys him additional support and understanding, it gets him regular occupational therapy, it explains to frustrated teachers why he finds it literally impossible to stand still and listen during PE. It helps his teachers develop strategies to help him listen and concentrate more effectively. It protects him from being labelled 'the dreamer' or 'the silly boy' or 'the lazy one'. In time, depending on how he matures - the gap between him and the peer group may widen or narrow and at the moment it's impossible to tell which way this will go - the DX may well help him understand why he struggles with the things he struggles with, and help him come to terms with why he is as he is.

So I would also say pursue it. Oh and FWIW I would say that DS is having a 'normal school experience'. It's just one where he needs a bit of extra support now and again.

Thanks again for all the great advice.

I had a word with the teacher today when I picked DS1 up at lunchtime. The teacher said that during his first few weeks she has been trying to work out whether he is being naughty (not listening to her) and/or has tendencies towards HFA. She said she thought it was unusual for a child his age to say that the danger sign on the back of the tip-ex bottle meant it was 'harmful' and that another sign meant 'flammable'.

The teacher said she will get to know him more until parents evening in a few weeks and probably ask for him to be observed by an independent person. Then we can discuss it again and I can take him to the GP if we think it necessary.

I was really impressed and you can't imagine the sense of relief. Can't thank you all enough for setting me off on the right foot. Cheers everyone .

Misty

Hard as it is I would seriously consider taking your DS to the GP asap to get him evaluated further by a developmental paediatrician. You might as well start the process asap rather than waiting yet again.

Okay thx, will make a GP appt.

So glad you spoke to the teacher and that she was so helpful and has been so observant rather than just writing him off as naughty straight away.

Could you ask her tomorrow if she can send off the request for his observation sooner rather than later, just so things are put in action? It doesn't mean deciding if you want a diagnosis or not, just getting support for your DS as soon as you can.

Mistyblue, my ds has been getting support for ASD traits for the last 4 years, we have dragged our heels re a diagnosis (dx) because he is getting the right level of support (he has really needed the support too).

I would probably get the ball rolling with your GP, and worry about getting a diagnosis when you reach that stage, children with additional support needs don't always need a dx - but that depends where you live really.

Good luck, it is not an easy process!