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I don't think we are even getting a referral

(10 Posts)
IveGotTheAnswers Tue 25-Apr-17 20:36:52

I'm so tired of going round in circles.

Where do we go from here? Look seriously into a private assessment? Just accept that not everything has a label?

DS is 8. I have had niggles since he was 2. He is astonishingly gifted in some areas. He struggles socially. He gets rages and can be quite horrible to me, his dad and his siblings (and violent with his brother). He can be mean to other kids without even knowing that he is doing it (e.g. by calling them names - copying behaviour that he's seen when they've been joking around but then missing the nuances of this and annoying them), and then seems bemused when they get angry. He has some friends, but only a couple of close friendships (with, to my mind, accommodating children). He struggles in group situations.

He is a very anxious child.

I just feel that something is off. 2 teachers out of the 5 that he has had through school and nursery have (to an extent) agreed with me. 3 have seen nothing (diagnosable) amiss, just a sensitive boy.

To my mind (and I have now read a lot) he exhibits lots of the social and emotional behaviour that come with ASD, but he doesn't show many restrictive / repetitive behaviours - no more than a NT child would.

I really thought that we were getting somewhere this school year. His class teacher was keen on assessment. But having completed the preliminary questionnaires neither school nor we ticked enough boxes for this to be taken further (even though I feel that the difficulties he does have are significant - we just didn't qualify in the numbers game).

He's definitely a quirky child. He needs careful handling (I'm very wary about who, e.g., I might ask to pick him up from school if I git held up, or who I could ask to babysit). He doesn't seem happy (he has quite a lot of insight, and regularly says that he feels different but doesn't know how to sort it).

I had a friend round for coffee today who was commenting negatively about his behaviour at a group yesterday (which she'd been at and I hadn't), and I just feel so rubbish now. He does, sometimes, behave badly (openly stroppily) in public. No parenting techniques that I have tried have helped. But it doesn't seem that his issues are enough to qualify for professional help (maybe he doesn't have anything that would merit a diagnosis?).

I have 2 other clearly NT children though, and do see significant differences between him and then. I'm not sure that giftedness alone would account for these (the latest suggestion from school).

Where, if anywhere, do we go from here?

OneInEight Wed 26-Apr-17 07:07:42

For my two things were a lot clearer at ten than they were at eight mainly because the social skills of their peers increased whereas theirs seemed to stop still so the gap became ever more obvious. In our experience teachers are not great at picking up problems unless the child starts being disruptive in class - in fairness they have thirty children to oversee.

The other thing I did with ds2 when we were unsure about an ASC was get him to fill in an online questionaire - his answers (and he had no pre-knowledge of what we were looking for) were a lot stronger than mine in terms of likelihood for an ASC. It was very interesting as at that stage we were pretty convinced ds1 had an ASC but unsure about ds2 and actually ds2 scored higher than ds1 when he filled in the answers himself.

taratill Wed 26-Apr-17 10:11:22

I can see how frustrating it is for you to know there is something but for you not to have a referral.

Have you been to see your GP to see if you can get a referral that way?

If he is anxious what measures are the school putting in? Remember you don't actually need a DX for needs to be supported (some schools will need this pointing out).

It is expensive to go down the private route but that is obviously an option.

As the mother of a 10 year old who cannot currently cope with school due to anxiety I would say you need to focus on that within the school environment. We now are in a position where my son has gone through the assessment process quickly because the 'wheels have fallen off' and obviously if there are signs you need to avoid that happening at all possible.

Good luck. flowers

EineKleine Wed 26-Apr-17 11:39:44

I don't know what the routes are round your way. Here CAMHS are it for 8 year olds, and you can self refer, you don't need to go via school or GP.

If this is the case where you are, you could put aside the previous form and refer him yourself anyway, or ask the GP to. You've got nothing to lose. Even if he doesn't get a diagnosis, it might be helpful to you and him to know if he hits 2/3 of the criteria or whatever.

Also is it possible that the "needs careful handling" and stroppiness aspects are linked to rigidity/ needing repetition? I used to think DS was just randomly volatile but we have slowly traced a good chunk of his upset down to unexpected changes in routine. The trouble is, he doesn't realise that the change is the problem and the meltdowns are normally purportedly about something else, so it's taken us years to piece it together. Need to guard against making the data fit the hypothesis, but it is amazing how much more has made sense.

IveGotTheAnswers Wed 26-Apr-17 14:12:09

Thanks all. I've checked and a referral to CAMHS does have to come via school or the GP here - but I haven't tried the GP yet so maybe that's our next port of call.
EineKleine that's a good question about rigidity. It's one I've considered and failed to reach a conclusion on. This is why I feel we need professional input. I can't tell when / if he's masking (and that's why he gets wound up), or if he's just a grumpy / anxious child! I'm quite clear that he has some ASD traits though, and a thorough assessment (whether or not this results in a full diagnosis) would be so helpful.

OneinEight that's interesting. I already feel at 8 that social differences have been thrown into sharp relief. As a toddler / young child, although I felt that he struggled his behaviour to an outsider appeared within the realms of normal. As an 8 year old he is markedly different from his peers (and his younger siblings can run rings around him, socially).

taratill, I'm sorry that your son has struggled so much. School make the right noises about not needing a diagnosis to support him, but haven't actually done much in terms of putting support in place (particularly now that they no longer feel that a diagnosis is in the pipeline). I'll try again - there's a lot of goodwill from school staff, but it's a small state primary with limited resources and experience (so I would have thought that a diagnosis would help them as well as us).

Thanks all for your replies.

imip Wed 26-Apr-17 17:45:19

You do need to go to the GP. Teachers are good at education, but cannot diagnose autism. You know your dc better, don't rely on a teacher to agree!

tartanterror Wed 26-Apr-17 20:45:30

Teachers don't seem to notice ASD in the Aspie form if your child is quiet/anxious sort. They notice the kids who struggle and end up hitting others, but the quiet kids are overlooked. Last year our school said that our DS (7) didn't really tick ASD boxes, but that he had "traits". Now 12 months on he has a diagnosis of ASD and although the school said he was too able to qualify for help, I applied and have got him an EHCP with a very healthy chunk of top up funding so that he gets support. Looking back I waited 3 or 4 years for the school or nursery to say we should get an assessment - I would still be waiting. Trust your gut. Go to your GP.

This book has a good list of typical behaviours - make a list and take it to the GP appointment. Don't take your son to the first one so you can speak freely - consider doing this at all stages so that he doesn't keep having to hear about all the difficult things, which is soul destroying for them.

tartanterror Wed 26-Apr-17 20:47:24

You must do this now (and not wait) because you want support for your son's transfer to secondary school. You need to pick an ASD friendly school so he is in an enabling environment, to avoid future mental health problems. Secondary transfer is a really good reason to get an EHCP as it is one of the few things that the LA can't delegate to the school. Good luck

IveGotTheAnswers Wed 26-Apr-17 22:24:17

Thanks - yes that's exactly him, tartan, anxious and quiet. He's the opposite of disruptive at school and probably just appears to be geeky and introverted (although can be explosive at home). And I've been waiting for school to suggest / support referral. GP time (we have a lovely one, hopefully she'll also be good with this).

EineKleine Thu 27-Apr-17 00:00:41

This is probably a stupid question but how do you spot an ASD friendly school, as opposed to one that says the right things?

OP Y3 has been difficult for DS too. The jump from infants to juniors feels huge.

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