Frustrated

[Ste]

Hi Everyone

 

Apologies in advance for the rambling but I’m so fed up!!

 

My DS who is 6 is currently on the waiting list to see a consultant after 5-months of assessments from CAMHS. Speech & Language have referred him to see ‘if he meets the criteria for a diagnosis of Aspergers’. From the Speech assessments they have identified that he has a high understanding of verbal communication but has no/very little understanding of non-verbal communication ,a lack of social skills, no eye contact, doesn’t understand consequences etc etc.

 

They have sent copies of reports to school with strategies for them to implement to help with transitions and to support him in social situations (to name but a few). They have also sent an internal referral to school based support for them to discuss DS with the school regarding transition plans.

 

The school up to this point have very clearly stated that they do not believe DS has any issues at school and that the problem is me and I’m not ‘firm’ enough with him!!!

 

Anyway I went to see school SENCO last night as I’ve received no contact from the school since the reports. To be blunt I wish I never went now as the SENCO stated that neither she nor his teacher think he has aspergers as he would not be able to ‘switch it on & off between school & home’. (Speech conducted their assessments within the school environment). Yet again I feel like no one believes there are issues and yet again I feel they think I’m making it up. What do I do??? If there is a diagnosis made I feel the school will not help or support plus they are moving to academy status soon which I feel may add to the lack of support.

 

It’s not just school either, Grandparents and other family relatives are constantly saying ‘he’s fine for us, nothing wrong with him’ which again makes me feel isolated and question everything that’s been said to me so far.

 

Would CAMHS refer him or state that they wish to see if he meets the criteria if they didn’t think he did???

 

In the meantime I’m left struggling and not knowing what to do.

 

Sorry for the long post but its just nice to get it off my chest.

 

Thanks

[Tally]

It costs a lot of money to assess a child for ASD. I don't think they would have agreed to assess if they did not think it was likely. Already they have identified clear issues, so you can't be imagining it.

[trekster]

I agree with Tally, it's not in your head. You might want to try looking on the NAS website.

They have 'makes school make sense' as a previous campaign and also 'you need to know' (CAHMS)

as their current campaign.

[cmuir]

Hi

 

All I can say is that if your heart and your head tell you something isn't right, keep going until you get some answers. I'm not for a second suggesting parents are always right (they're not), but the same is true of professionals - I was told to stop working full-time and told that I was basically a first-time mum who was struggling to adjust to parenthood. I was furious that I could be labelled as such without any investigation and challenged my HV and GP to make the appropriate referrals. They did and after a bit of being passed from pillar to post, my son was eventually diagnosed (at 4.5). He's now 9 and there's absolutely no doubt that he has AS now. I still feel bitter that my son lost out on early years support and had I no persevered I don't know where we'd be now. I kept diaries of things that struck me as being odd about my son's behaviour i.e. at christmas, not opening presents and stacking them up behind the dining room table, he'd insist on walking downstairs first, routines, headbanging, etc. One professional told me this was a very negative thing to do! I pointed out that so much was happening on a daily basis, it was the only way I could remember things. In addition, I pointed out that one doesn't go to their GP and say they feel great - they go to have their ailments assessed, etc. In addition, in advance of appointments, I'd photocopy only relevant parts (highlight them) and/or type up in bull-point format (since professionals won't have time to read through pages and pages). I think this was invaluable insight into my son's behaviour and I believe it was a helpful record.

 

Best wishes and keep your chin up.

 

Caroline

[Ste]

Thanks for your replies

 

I have known there was a problem since he was 2 - he was also put onto early years actions by the Area SENCO at this time. Everyone just said it was all behaviour and didn't seem to take my concerns seriously until whe was 5 & i begged my GP to refer him as things had gone completely out of control.

 

On his first visit to the GP she mentioned aspergers straight away and after assessments at CAMHS they have also said the same thing. I wasn't really aware of Aspergers until this point so it was professionals who suggested it and not me.

 

I'm very grateful to have found this forum as already it has helped so much with advice and generally hearing other peoples stories & experiences.

[lee2010]

I believe my son is asperger as it runs in my family we havine problems with his behaviour at home and getting even to school where he is very quiet and the exact opposite, we have the same problem as they say we cant imagine him been so mis behaved as he is so quiet at school.

 

I think as was in my case unless you are haveing behavioural problems or very obvious learning dificulties the schools are uninterested and happy to accuse you of bad parenting at home.

 

This sounds very similar to the experience described but im pleased you are getting somewhere as clearly the right people have regonised it, we have tryed for years but was put off after a health visitor decided his behaviour was simply down to his mother been bipolar and bad parenting.