Advice wanted: are we looking for something that's not there

[Toospotty]

Right. DS is 11 and about to leave primary school. Long and complicated story but over recent years he's suffered quite badly from bereavement and other issues. In nursery, concerns were expressed about his social communication and autism was mentioned. He was assessed then by a clinic and they said no, but he stayed on School Action Plus until year 4, when the school said they didn't understand why he'd ever been put on. (He changed schools in year 1.)

Now we are worried. His school raised new concerns about his social communication in year 5 and wanted to refer him to a communication clinic, even paying for a private SALT assessment to do it urgently. The community paed though said there was no need. He was referred to CAMHS for various reasons, including his use of 'I want to kill myself' when told off at school, and they also feel there is no clinical diagnosis to be made.

He struggles to deal with emotion, is very self centred, very literal, has few friends and frequent fallings out with the ones he does. He talks too loudly and can't sit still. He can't concentrate on anything, or follow instructions. The school were unhappy about the lack of referral and have put him back on SAP.

I'm just not sure what we do. He is very intelligent, particularly with maths, and clearly isn't a candidate for a statement even if he had been diagnosed. He has a friend with Asperger's and is clearly more socially adept than him. Some of his issues could be preteen acting out, particularly one that's had a hard time. But his behaviour is worsening - he's starting self harming - and CAMHS involvement is minimal. We're told he struggled to cope with emotion but given no guidance on how to help him with this.

Does anyone have any thoughts on this very long post? Sorry to go on.

This is a very similar situation to our family - lots of family stress highlighting social communication problems at school and leading to severe anxiety. Even to the extent that when we moved school in Year Two they couldn't understand why they had an IEP. Roll onto Year 4 and the school were screaming for help. Both my boys are now diagnosed AS and have been statemented although they are academically able.

It is worth asking for a reassessment - I don't think my boys would have been given a diagnosis at a younger age but the gap between them and their peers is now plainly obvious.

AS presents differently in different children so don't rule it out because your son presents differently from his friend at school. Eg I have one twin who hates school, resists all demands and has socially withdrawn and another who worries a lot but likes school and going out even if he can have meltdowns when it all gets too much.

Thanks for replies. Very interesting, OneinEight, about different characteristics.

He moved school in year 1 and took the SAP with him. He had it on the basis that he'd had involvement with outside agencies in year R and the new school just sort of kept it going but with no clear goals other than lots of chat about eye contact! The SAP they now have in place references his engagement with CAMHS, the social communication work they are doing with him in small groups, and the SENCO's concerns.

I think the problems he had are substantial enough that CAMHS think they are the issue. He has seen a psychologist once, but not for a full assessment; the ongoing work with him is done by a family therapist, an art therapist and a music therapist. The assessment in our opinion (and the school's) did not represent him very well, eg it said he was very sociable, and engaged, which is not the experience of any of us. We could think of issues in all the various areas that are needed for a diagnosis and the assessment disagreed.

I don't know whether it might be better to wait till he's started secondary school (which he is doing with a SENCO handover, the SAP, and a place given to him on social/medical need, so they are alerted to incoming, so to speak) and see if they want to press it?

I suppose what I would like is some way we can understand whether his behaviour is driven by his experiences, or an underlying issue, so we can try to address them in the best way. It's so frustrating. We seem to be being told by everyone around us that there are problems but no one suggests any sort of techniques to help, and despite intervention, his behaviour is getting worse, and more harmful to him physically, emotionally and academically.

Do not leave this till Secondary school because he could well sink without trace if his additional needs there are not being met. I would ask your GP to refer your son to a developmental paediatrician as a matter of urgency.

His problems could all too easily overshadow his ability to learn so he needs more support now in any case. He should ideally have a Statement.

CAMHS I would argue have failed your son to date and no-one professional to date has been thorough enough with regards to your son.

I think there's no chance of getting anything sorted before secondary given how little time there is. I have experience of the assessments for a statement and in a very clear cut medical case it still took months. I'm also pretty sure, given the amount of involvement he has already, that our GP wouldn't start a fresh referral. That seems pretty unlikely?