DS has behavioural problems, should I request a statement?

[sugarcandymountain]

First post here - I've lurked for a while and am now feeling desperate enough to post!

DS (9) has had behavioural problems in school which have got worse over the past couple of years. Kicks chairs, pulls over furniture/displays, swears, hides under tables, runs around the school, refuses to work. He's just had his 5th formal exclusion (and had other informal and internal exclusions as well) and the school are worried that he's becoming too dangerous to manage in school.

He's very bright but I suspect ASD - he has a long list of traits including sensitivity to noise, hating change, poor planning, messy writing, being a loner, staying indoors at playtime. I've only thought about the possibility seriously in the past few months but I can see a lot of the triggers in his behaviour lurking in his social/understanding difficulties. I've started using techniques suggested for AS and they've been really useful.

However, he doesn't have a diagnosis. He's due to start intensive psychotherapy soon (we first got referred a year ago) and we are awaiting a psychiatric assessment (2nd session later today!).

I'm not too impressed with the SEN provision at his school - he has a session with a Learning Mentor once a week and is about to start working with someone from the LEA's Behavioural Support Unit (2 sessions/wk). I feel that he really needs significant 1:1 time. I've passed on the EP report and mentioned my thoughts about AS but I get the feeling they're not taking it seriously - they see his problems as purely behavioural (caused by the fact that I'm a single mum).

The head tells me that they've requested the LEA EP to see him and that might lead to a statement, but I've had a look at the IPSEA site and it looks like it would be better to do it myself (and I would feel better knowing it was done by me rather than relying on the school). I've copied the model letter from the IPSEA website (www.ipsea.org.uk/sevenfixes.htm) but I'm not sure how to word it without a formal diagnosis. There are two blank paragraphs to fill in on the letter and I've no idea what to put! Do I say 'suspected AS' or just mention behavioural traits?

Should I wait to hear from the psychiatrist (which might be a while, things tend to happen slowly there)? Or get the ball rolling now? I suppose I'm worried that he's now in Yr 5 and I want things to be put in place for when he applies to secondary.

Sorry for a long first post, this has all been going on for a while and there's a lot to explain!

Sorry, I can't answer all your questions but it is better for you to request a statement from the LEA rather than school as you have the right to appeal if they turn you down.

You know you can appeal no matter who leads the request for the statement. We were turned down, then went through the school, got a statement, then challenged the level of support proposed, it went to panel and was increased, and we are not in the process of agreeing it. It has been a collaborative process in which we have been very proactive. However, this was in a situation where, after some real difficulties, the school was cooperative and we had a proper, recognised diagnosis for him. IN your case, I would put his symptoms, and all about his exclusions etc.
But I think the really urgent thing for you is to get your son properly assessed. If your son is on the autistic spectrum then psychotherapy is totally inappropriate for him. You need him to see a developmental paediatrician and I would approach your GP about this, and also talk to the SENCO.

I don't think there can be an appeal if the school makes the request and is turned down. Attila knows a lot about statementing and perhaps she will be along later to confirm that. I know my DS5's school made the request last year and was turned down-they could not appeal. I intend to put in my own request in the next few weeks.
I would do it sooner rather than later sugarcandy.

I was told that I could appeal and it made no difference who started the process. We sucessfully challenged the original statement even though the process went through the school.

I think that is different though mabanana-you already had the statement. If the school makes the request for assessment and it is turned down, I am pretty certain you (and they) cannot appeal.

No, we didn't initiate the successful application for a statement, the school did, and when I asked what would happen if the application was turned down I was told that the school would appeal. THe Senco is hugely experienced at getting statements (it's a big school with large number of kids with SN) and I really don't think she would get that wrong.

I've heard that its better for the parent to apply than the school but i don't know for sure if thats the case. With ds we both applied seperately. It will definitely help though if you have the school's support on this. You don't need a dx so don't be fobbed off if you get told that. Ds has had a statement for 3 1/2 years but only got a dx this august.

I second the idea that you need to get him referred to a developmental paediatrician. See your Gp and ask them to do this.

Thanks - I thought I'd read somewhere about the right to appeal too, also there are maximum time limits. I don't feel particularly supported by the school in terms of statementing - they have said they are/will do it but are waiting for the LEA's Ed Psych to come in, they don't seem to be approaching it with any sort of urgency. I think they agree that he needs extra help but are not sure if the LEA will agree (one teacher last year told me simply 'It doesn't work like that' when I tentatively asked about statementing - but he's had more exclusions since then). Personally I would feel more confident doing it myself, and have started drafting a letter. I suppose I'd be worried that it looks like I'm not working in collaboration with the school if I start the process myself iyswim.

mabanana - it's a long story how we ended up doing psychotherapy. We got the referral when he started showing disruptive behaviour but I wasn't sure what was behind it. He's had some issues at home so it seemed a good option then - it's just in recent months I've looked more into the triggers and read around the subject a bit more.

I asked my GP for a referral to a dev paed last month but he said that as I was already awaiting an appt with psychiatrist at the same clinic (referred through the psychotherapy team, waited 5 months for an appt) then it would just be duplicating. My GP has never been the most supportive, he was very sceptical at the suggestion of ASD as DS was being fairly placid that day - he often seems perfectly normal and has never seen any of his horror behaviour.

I just came back from the second appt with the psych today who seemed concerned and keen to meet for feedback soon but wouldn't discuss any further in the waiting room. So I get the sense that some kind of diagnosis is on the cards, but I'm not sure if it was an autism-specific observation. He says he played with some lego the first week and plasticine today, and was asked lots of questions.

The psych and the paed are not duplicates and you need to go back to your doctor and demand to be referred. I don't think that the psych can give you a diagnosis without the input of the paed anyway.

It really depends on your LEA as to whether the request is better coming from a parent or the school. Where I live the LEA looks more favourably on requests from schools rather than parents for example - we applied as parents for statutory assessment and were turned down very speedily but the school reapplied and the assessment was approved.

You need to get some support in this - have you got Parent Partnership locally? That can give lots of advice and come to meetings with you.

Your DS will need to be seen by the LEA EP for a statement to be awarded as they have to undertake one of the assessments for the LEA consideration. Have you chased school about when they will be seeing him? If your DS is such an issue to the school they should be demanding an urgent referral just to help them out - although you may have to make yourself a pain in the bum with them to get them moving faster on this.The exclusions will help your case enormously - but they shouldn't be giving informal exclusions as these are not legal and won't 'count' as evidence of behaviour that needs managing 1 to 1. I would insist that if they are excluding they make them formal which will flagup the problem to the LEA - I know it is upsetting to have exclusions but if school cannot manage his behaviour you need all the evidence you can get to support your statement request.

As others have correctly stated, the pysch cannot make a diagnosis; it will need to be the developmental paediatrician. I would look into changing GP practice if this GP continues to be unhelpful.

Have you been referred to CAMHS?. ASD is not always their area of expertise.

These LEA's are so different to one another; here they prefer parents to make apps rather than school (they keep turning the school made applications down). If you apply for the statement yourself you know its been done then; you need to bear in mind as well that if the LEA agree to assess (and thats the first tricky bit) it can take six months to finalise the statement (and that's if everyone agrees to the content).

You don't need a diagnosis in order to receive such a document.

SOS;SEN and or IPSEA are both very useful to contact as they are completely independent. Would suggest you call either one of these organisations. Parent Partnership are not always independent of the LEA and can thus tow the party line (the one in my area works out of the same building as the LEA).

AttilaTheMeerkat, I thought a psychiatrist could make a diagnosis of ASD? I am thinking of changing GP in any case as mine has been pretty unhelpful in other instances too.

We were referred to CAMHS a few months ago but when they found out we were already awaiting treatment with the psychotherapy clinic they wanted to wash their hands of us and said they couldn't do any more than we were already getting.

I'm going to give IPSEA a call later. I'm still a bit unsure of how to word the statement application - how much detail should I put in? Do I write anything about what kind of help I think he needs or will that come in the assessment stage? Do I put details about specific incidents of behaviour?

I'd ask that initial question of yours also on the Special Needs board of this website too. I'd still push your GP though for a referral to a developmental paed at a Child Development centre.

I'd certainly change GPS if they have been consistently unhelpful.

www.ipsea.org.uk have model letters you can use. You will need to write to the Chief Education Officer of your LEA and give them six weeks to reply (note that date on your calendar). The initial letter also does not have to be extremely detailed.

Be prepared for the LEA to say no but you can appeal.

If you can't get through to IPSEA (and ringing them can be an exercise in frustration simply because they are constantly busy) try ringing the National Autistic Society or SOS:SEN.