Awful afternoon at CAMHS

[daniels-mum]

Hi everyone, I am very new to this forum and I hate to sound like Im moaning but I just had to share my frustrations, I have just been for an appointment at CAMHS as part of my 10yr old sons assesment process. The assesment is coming to an end and they have agreed they will make the decision on 23rd October when they sit for their panel. The nurse dealing with Dans case has told me that she doesnt think Daniel will meet the criteria for diagnosis as in her words "he doesnt tick all the boxes to meet the criteria". She did say though that she couldnt pre empt what they were going to say and that they could still diagnose but she thinks it unlikely. I just feel like I am completely banging my head against brick wall, a feeling Im sure you will all be very familiar with!!

 

Im just so angry, I feel like I am in limbo until the 23rd. They havent even seen him at home or in the playground at school, despite me asking 3 or 4 times.

I just feel so let down, although I dont know why because I didnt have much faith in them to start with.

 

The Ed Psyc, Speech Therapist and several previous teachers all have said thay they think he is somewhere on the spectrum, he has Level 2, E Band funding, which equates to 6 units a week. As a result of his funding his class have a Teaching Assistant but how much he directly benefits from this I wonder. They are very hard to pin down and have never given me any definative answer about how much 1 to 1 he gets, which I suspect is very little if any. I have only seen one IEP which I had to ask for twice and that doesnt contain any specific information about support time etc.

 

I am strongly considering getting a private diagnosis and wondered if anyone has any experience of going private, I know you shouldnt have to but I feel this may be the only way foward. Ideally I would like to find someone who works in NHS as well as private as I feel this may carry more weight than someone who does purely private referrals. If they do refuse to diagnose him I know that they are wrong, everything my partner and I have read on here and elsewhere, it sounds like someone could just be describing Daniel. He isnt too bad in the classroom, although I fear that will change when he starts High School next September, but he suffers dreadfully from a social aspect, he is just in another world completely and cannot handle playing with other children his own age, preferring to play with much younger children like my 3 yr old niece. He is also very young and niave in his ways.

 

Sorry to rant, I know there are people who are in much worse situations on here and my heart does go out to them, I just feel so frustrated with the whole thing. Why are all these children so let down,

[Babylicious]

we went private after cahms did the same to us

[JsMum]

I would defo go private or request a second opinion if you feel that the panel have it wrong, ask also for a detailed explanation to why they feel he doesnt meet the criteria for AS, also if they feel he has features of AS ask them to record that in writing too as it could be evidence for the future especially in high school.

 

My son doesnt tick all the boxes too, your defo not on your own, we have confirmation of Js ASD elsewhere and continuing to support him for his ASDs, so do keep fighting if you feel it is AS/ASD that your son has, remember some children never get a diagnosis, but they do have Autism.

 

JsMum

Edited October 2, 2008 by JsMum

[vicbee]

Hi Daniel's Mum!!

 

Just reading your post and I know that is exactly the position I am going to be in at the end of all this. Its so frustrating when you KNOW how much all this is affecting your child's life and everyone elses but are just left at the professionals' mercy. The way you describe Daniel is exactly how my daughter is - her biggest problem is socially - she acts like a 5 year old most of the time even though she is 12. She even looks only about 8 because she has lost so much weight and not developing well. She has always played with much younger kids because they seem to be more accepting of her immature behaviour. I am absolutely dreading high school - in fact Ive only just realised myself in the past 6 months that she may be on the spectrum - I moved to Spain last year to start a new life and also thinking i was giving her a better schooling - thinking there was something wrong with society here in the UK that she was being treated like she was in primary school - outcasted and no friends and it could only get 10 times worse in high school - only to find out in Spain that the problems continued and it wasnt actually society but that there was something wrong with her. to compound the problem the total change of moving to another country brought about a whole set of other anxiety problems. We had no choice but to return recently because i couldnt get any help over there for her or myself.

 

So now - facing high school is my main worry - if they dont cope so well in primary school - whats it gonna be like in high school where they are expected to act a certain way to fit in - its bad enough for 'normal' kids. My daughter just wants to play with her teddies and dolls and act like a baby - not be pressured into smoking, drinking and having sex like other teenagers of that age. The thing is - its more heartbreaking for us as parents because we see exactly what is happening to our children - I dont know about your son but my daughter is completely oblivious to the way children of her age respond to her. i see the pattern over and over again - she meets someone, they get on for a few days and then immediately the cracks start to show as soon as the other child realises that my daughter isnt actually on their level. And its hard to do anything about it when you dont have a diagnosis - if only we could just tell everyone - she/he is not really a pain in the backside - they have a problem communicating!!! AAARRRGGGHHH its so frustrating and really heartbreaking to see how people respond to YOUR child. everyone wants their child to be popular but Ive just had to accept that mine isnt and that i need to just give her all the love and acceptance she needs myself.

 

Luckily she is being allowed to repeat year six and is in a wonderful primary school with only 49 kids in the whole school - its mainstream but i know the big battle comes next year and i am dreading it and especially if i do not get a diagnosis.

 

Please keep us updated as to how you get on with diagnosis and i guess like i am realising - we are not alone!!! At least we have other parents to understand exactly how we feel. Sod the professionals!!!!

 

Vicbee

[cmuir]

Hi

 

I have to say that after jumping through hoops for CAMHS over the past year and a half, I got nowhere with them. They've basically chosen to disregard the fact that my son's consultant feels he has a mood disorder (ie bipolar), but it's CAMHS remit to diagnose. Firstly, they won't acknowledge that my son self harms, etc and have refused to speak to a social worker that witnessed heaps of things first hand. Go to the stage where as recently as a few weeks ago, I requested that my son be discharged from them. Have to say, I do feel alone, but I felt so much worse coming out of appointment sessions because they wanted to talk about MY childhood and ask ridiculous questions about whether or not my son was planned, etc (basically a finger pointing exercise!).

 

Firstly, I would question whether it's up to a 'nurse' to comment on the possibility of a diagnosis or not. A child DOES NOT have to tick all the boxes to receive a diagnosis. My son isn't a classic 'Aspie' and he baffled a few people over a couple of years (our GP/HV/Community Paed were adamant he didn't have AS). It was only by perseverance that we got a referral to someone that really knows her stuff. She carried out an ADOS assessment and coupled with background reports, and a diary that I'd kept over an 8 month period was more than enough to provide a diagnosis of AS (even though he isn't classic/doesn't tick all the boxes).

 

Secondly, in desperation I too considered the private route. However, I heard that some eg education authorities choose not to recognise private diagnoses, which basically means they're not obliged to put in place support. A difficult one, but don't give up. If kiddo's not already have an ADOS, I'd ask for one.

 

Regards

 

Caroline

[vicbee]

OH - and on a lighter note - ive been trying desparately to change my location on my profile - thinking 'i dont live in flippin norfolk broads!!!' - ive just realised!!!!!!

[dooday24]

vicbee norfolk broads isnrt where u live it goes by how many posts u have written it changes the more posts u write

 

love donnaxxxx

[daniels-mum]

Thanks to all that have replied and for the advice, it is a help knowing that you are not on your own, whilst at the same time not wishing any of this of anyone.

 

It is a concern of mine that the LEA wont recognise a private diagnosis, I hoped that if I found someone that also worked for the NHS that would hopefully add some credibility, it is more of a last resort thing to be honest. When I started all these assesments I never in this world imganied how hard it would be to get an diagnosis, I have certainly learnt through bitter experience, I can only assume the widespread reluctance to diagnose comes down to money. They seem to forget these are childrens lives, it just makes me so mad, and I am no militant, ive always been pretty easy going but this has annoyed me so much today.

 

I just know if they refuse to diagnose they are wrong, I can see before my eyes Daniel is getting worse as time is going on, he probably has the mental age of about a 7 yr old and he is 11 in November. I am deeply worried about when he goes to high schol next year as I think he will just be overwhelmed, it is a massive school and he is likely to get lost in between classes and the be late which will send him into even more of a panic. Thats one of the reasons a diagnosis is important to me because at least there is a reason for his behaviour which could otherwise be classed as eccentric at best. At the moment I think you are somewhat at the mercy of the teacher as I have found some are more sympathetic than others.

 

I will let you know how I get on Vicbee with regards to the diagnosis or non diagnosis as the case may be,

 

By they way, I was wondering about Norfolk Broads so that has answered a question for me!!

[Karen A]

Hi.We are about to obtain a final clear decision regarding a Dx of AS on Monday.Ben is also 10 and has been in the assessment system for three years.

As the result of research whilst going through detailed further assessments in the last few months I have discovered that Great Ormond Street hospital [National Centre for High Functioning Autism] now offer assessment for complex cases on a National level for children /teens where local assessment outcomes have been debated.A referal is needed and there are specific criteria for offering an assessment.However it may be worth looking at the website to see if it is possible to push for a second opinion within the NHS before paying privately.

It is also worth making sure that the team doing the local assessment are the specialist team for Dx AS within your area.

I know it is very frustrating.Karen.

Edited October 3, 2008 by Karen A

[bikemad]

Ive got to see chams Tuesday supposedly to have in writting what he told me verbally that ds has but tbh I dont believe owt til I see it if that makes sense. <'>

[Stella63]

Hi Daniels-mum,

 

I would also see if you can get an appt with the SENCO at the secondary school he will be going to. Sometimes they are a lot more switched on than at primary schools (not always!! not wanting to offend those who have had good experiences!!!). Explain the current situation and your concerns and get them on side.

We had nothing good come out of our experiences with CAHMS, complete waste of space and had to go private for AJ's dx of ADHD. Unfortunately you have to fight the battles and keep fighting them - I wish a lot of these threads could be read by the so called 'professionals' who are dealing with our kids because this is the reality and a lot of them haven't got a clue!

 

Stella x

[bambinaia]

Hi I'm new to the forum but have experiences the same sort of problems as you. CAMHS are part of a multi agency assessment team when carrying out a dx. If you can bear the wait for the outcome all well & good if however you're not happy with the result you can ask for 2nd opinion in the form of a referral to the Newcommen Center, Guy's Hospital (this is the main hub of the ASD DX world). This is NHS but the wait can be several months also the referral has to be by the paed not GP(make sure you have a list of your concerns as to why you are not happy with the outcome & don't be railroaded). An alternative is if you contact NAS & they will advice of DX center. Lorna Wing (I think) use to head one of the centers.

 

The other thing is keep strong because the bottom line is if they can save money they will!!!

[jo jones]

i know how u feel we been 2 years in now and frustrated also,,only july this year his paed said oh he needs to be re-assessed!!!!!!!!!!!!!! duhhhhhh,only cos i took video's with me to show her what he is like??????? makes u mad but we keep fightin innit xxxxxxxxxxx jo

[bikemad]

Ive posted about my nightmare with cahms they dont seem to care at all do they!!!!!

[daniels-mum]

Hi thanks to all that have replied, I havent been able to get anywhere near computer for a couple of days, but thanks for all the advice, it really does help and I apprciate it, with regards to diagnosis I am going to wait until the decision on 23rd and take it from there, I have looked up GOSH and Lorna Wing Centre on NAS, and I have them bookmarked now!! Will also look into Guys hospital as that sounds very promising. There is an open evening at secondary school next week, this is where Daniel will be going next September, so I am going next week and am going to monopolise the SENCO all evening. I am quite happy with the school, It is a large mainstream school but they have got quite alot of special needs kids, quite a few with Autism and some with Down Syndrome and other disablilities, they also have a base unit for special children so that is worth knowing as it may come to the point that Daniel needs to go into there, I also have a friend who has two autistic children at the school and she is very happy with it. In fact in someways I am hoping it wll make a nice change dealing with a school that involves you. My only concern is that his funding is due to be reviewed not long after he starts so I am going to have to fight tooth and nail for that to continue, I think this is why it will help if I have got a diagnosis in place by then.

Why is everything such a battle. Does anyone else get worn out, I work full time and also have an 18 month old, I worry I am neglecting him sometimes, I cant even think about Christmas, it brings me out in shudders!

[bikemad]

Hi thanks to all that have replied, I havent been able to get anywhere near computer for a couple of days, but thanks for all the advice, it really does help and I apprciate it, with regards to diagnosis I am going to wait until the decision on 23rd and take it from there, I have looked up GOSH and Lorna Wing Centre on NAS, and I have them bookmarked now!! Will also look into Guys hospital as that sounds very promising. There is an open evening at secondary school next week, this is where Daniel will be going next September, so I am going next week and am going to monopolise the SENCO all evening. I am quite happy with the school, It is a large mainstream school but they have got quite alot of special needs kids, quite a few with Autism and some with Down Syndrome and other disablilities, they also have a base unit for special children so that is worth knowing as it may come to the point that Daniel needs to go into there, I also have a friend who has two autistic children at the school and she is very happy with it. In fact in someways I am hoping it wll make a nice change dealing with a school that involves you. My only concern is that his funding is due to be reviewed not long after he starts so I am going to have to fight tooth and nail for that to continue, I think this is why it will help if I have got a diagnosis in place by then.

Why is everything such a battle. Does anyone else get worn out, I work full time and also have an 18 month old, I worry I am neglecting him sometimes, I cant even think about Christmas, it brings me out in shudders!

 

I know exactly what you mean it just exhausts n drains you dont it. <'>