Problems with CAMHS - advice if possible please.

[echelon]

I'm a 39 year old mother with an 11 year old boy who is being assessed at CAMHS.

 

We have had problems since he was about 3 and I approached the GP on several occasions only to be fobbed off. Once he started school they flagged up his behaviour and quickly involved an educations psychologist and he was issued with a support worker. CAMHS sort of assessed him for adhd, but didn't do any cognitive testing - just the Conners Rating Scale. They told me that he was beginning to cope okay in school and so didn't have adhd.

 

Time went on and with it a whole load of problems at home, so we approached CAMHS again only to be fobbed off in quite an unpleasant way by some sort of social worker.

 

So, I had my son assessed privately at a leading UK clinic in the south and they told me that he did have combined adhd, but was coping okay at school due to his high IQ - he's in the top 3%. He also loves school and his teachers report that he's very motivated to learn. He's crazy about History. The clinic also told me that he has some dyspraxia.

 

They didn't want to medicate him so we were given parenting strategies advice and went away happy that at last we knew what the problem was.

 

Unfortunately, the parenting strategies have had a limited effect and we continued to struggle.

 

My husband has been made redundant due to the stress at home and I have been referred back to another CAMHS department.

 

They have been assessing him for adhd and the nurse says that he's showing some signs of aspergers. They don't seem to think he has adhd due to him coping okay at school, but his social relationships are impaired which they don't seem to be recognising.

 

CAMHS treat us like fools. They appear to think that we need parenting support and that's all, but my son is badly affected, but can hide it well. Superficially, he gets on with his peers, but he has only one real friend who will tolerate him for any length of time.

 

His problems are:

 

Extremely loud - bossy and talks 'at' people rather than to them.

Extremely demanding of attention.

Unable to have a proper conversation - doesn't take turns.

Talks about he same topics constantly.

Enjoys arguing and tormenting family members.

Poor attention span and has problems concentrating on a lot of things.

Suffers from various tics - facial at the moment.

Gets very angry and emotional often.

Unable to follow commands and directions properly.

Hyperactive - needs little sleep and always on the go.

Unable to do sports and can't tie his shoelaces - manual dexterity poor.

 

These are some of the problems that he has.

 

The nurse has told me that even if he is positive for aspergers it will only be mild and she is very dismissive of our struggle to care for him.

 

We are competent, intelligent people and I'm a qualified nurse. We're not neurotic, unstable or unable to cope with children - we have a five year old who's perfectly fine and presents no problems whatsoever.

 

My question is - are the tests for aspergers objective or are we relying on just the opinion of CAMHS?

 

How do you deal with these people when they're just ignoring the problem?

 

Any advice or insight will be gratefully received as we are really struggling.

Edited November 15, 2009 by echelon

[suze79]

Hi

 

I am going through a very similar thing at the moment. You really feel like tearing you hair out. My son is 10 and was assessed at cahms and we were told that although he was showing traits of aspergers they were reluctant to give a diagnosis and would review him in a year. I think these peolpe try to get away with doing the bare minimum and underestimate how demanding caring for a child with multiple difficulties can be. I sometimes feel that they think I am making it up or exaggerating. I have been told by a few social worker friends that it is a resource issue. That if they "offically" recognise a problem then they are duty bound to provide supprt - which they can't afford to do.

 

Anyway I'm sorry I couldnt be more helpful. I was told by someone on here to contact Autistic Society for further advice which I plan on doing and I also think I am going to seek a private consultation.

 

Can I ask you how much did you pay for yours?

[echelon]

I paid £1300 for a full days assessment - that included seeing an educational psychologist and a consultant paediatrician. They were very good and she conducted the cognitive tests in front of me so that I could see for myself where he was struggling. It would have been £200 for a review - every 3, 6 or 12 months depending upon the severity of the problem - she recommended a 12 monthly review, but my husband was made redundant in the meantime and I couldn't afford to attend.

 

I have heard that local authorities completely ignore a diagnosis made privately!

 

I am furious that people should be treated like this. Another boy in my son's class has aspergers and he gets everything going - his parents are coping fine and are quite happy with things when I speak to them. We're on the verge of collapse as a family and my husband has lost his job.

 

thank you for your reply anyway. I'd never have considered that resources would be rationed to children.

[JsMum]

I paid £1300 for a full days assessment - that included seeing an educational psychologist and a consultant paediatrician. They were very good and she conducted the cognitive tests in front of me so that I could see for myself where he was struggling. It would have been £200 for a review - every 3, 6 or 12 months depending upon the severity of the problem - she recommended a 12 monthly review, but my husband was made redundant in the meantime and I couldn't afford to attend.

 

I have heard that local authorities completely ignore a diagnosis made privately!

 

I am furious that people should be treated like this. Another boy in my son's class has aspergers and he gets everything going - his parents are coping fine and are quite happy with things when I speak to them. We're on the verge of collapse as a family and my husband has lost his job.

 

thank you for your reply anyway. I'd never have considered that resources would be rationed to children.

 

Contact a family are a good helpline to ensure that your sons private dx are taken notice of.

 

In education though the LEA may suggest a private dx wont be excepted, when it comes to sendist everything is read and Considered.

 

So they are still essential at this period.

 

You can also request a second opinion with your NHS for a reassessment in light of your private DX and that there is now opinion he has AS but they are not dx.

 

Anyway defo get intouch with Contact A Family.

 

Also it maybe worth attending a local AS parent support group.

 

Also National Autistic Society have a helpline too.

 

I have attended some of the HELP conferences and recieved a lot of help too.

 

JsMumxxxx

 

 

[cmuir]

Hi

 

I can sympathise as I went through a spell of being utterly frustrated with CAMHS and really felt like we were going nowhere with them. I kept a diary of my son's behaviours simply because so much was happening on a daily basis and had I not recorded anything I would have forgotten things. CAMHS person kept telling me I was doing a good job (she offered no advice), but added that keeping a diary was a negative thing to do. I was fuming and pointed out that you don't go to your GP to tell them you feel great! You go there because you have a health issue that needs to be resolved. I ended up effectively having my son discharged as I couldn't continue with the same person in CAMHS - I felt it was far more damaging to my sanity if I continued. However, within 6 months, things were a nightmare (issues don't just disappear, they come in peaks and troughs!) and so I contacted CAMHS again to ask to see someone else. During that first appointment I actually took my husband, mother and sister. Not entirely sure it was a sensible thing to do - I'm aware I got their backs up, but if nothing else it showed them that we were all singing from the same song sheet. Wasn't me just being neurotic. Have to say, that was a real turning point. I found them to be as helpful as they could be. Guess what I'm saying is that it may well be worth asking to see someone else.

 

On another issue, it can be difficult to diagnose a child, particularly when they have a high IQ - kids can find ways of managing and so it can look to adults that they're coping or there isn't an issue. In addition, it is not unusual for someone to have a comorbid condition ie more than one disorder, for example, ADHD and Aspergers. It fantastic that your son is coping in school, but that doesn't excuse the absence of the right diagnosis. In my experience, persistence can pay off. Definitely worth asking to see someone else in CAMHS though.

 

Caroline.

[echelon]

Contact a family are a good helpline to ensure that your sons private dx are taken notice of.

 

In education though the LEA may suggest a private dx wont be excepted, when it comes to sendist everything is read and Considered.

 

So they are still essential at this period.

 

You can also request a second opinion with your NHS for a reassessment in light of your private DX and that there is now opinion he has AS but they are not dx.

 

Anyway defo get intouch with Contact A Family.

 

Also it maybe worth attending a local AS parent support group.

 

Also National Autistic Society have a helpline too.

 

I have attended some of the HELP conferences and recieved a lot of help too.

 

JsMumxxxx

 

 

Oh, thank you so much for that. I have heard of Contact A Family and I'll phone/email them today. I can't sleep each night for worrying about all this. I'm terrified that they just push all this under the carpet and we end up spending the next few years struggling on. I don't think we're gonna make it as a family if they don't get to the bottom of these problems.

 

[echelon]

Hi

 

I can sympathise as I went through a spell of being utterly frustrated with CAMHS and really felt like we were going nowhere with them. I kept a diary of my son's behaviours simply because so much was happening on a daily basis and had I not recorded anything I would have forgotten things. CAMHS person kept telling me I was doing a good job (she offered no advice), but added that keeping a diary was a negative thing to do. I was fuming and pointed out that you don't go to your GP to tell them you feel great! You go there because you have a health issue that needs to be resolved. I ended up effectively having my son discharged as I couldn't continue with the same person in CAMHS - I felt it was far more damaging to my sanity if I continued. However, within 6 months, things were a nightmare (issues don't just disappear, they come in peaks and troughs!) and so I contacted CAMHS again to ask to see someone else. During that first appointment I actually took my husband, mother and sister. Not entirely sure it was a sensible thing to do - I'm aware I got their backs up, but if nothing else it showed them that we were all singing from the same song sheet. Wasn't me just being neurotic. Have to say, that was a real turning point. I found them to be as helpful as they could be. Guess what I'm saying is that it may well be worth asking to see someone else.

 

On another issue, it can be difficult to diagnose a child, particularly when they have a high IQ - kids can find ways of managing and so it can look to adults that they're coping or there isn't an issue. In addition, it is not unusual for someone to have a comorbid condition ie more than one disorder, for example, ADHD and Aspergers. It fantastic that your son is coping in school, but that doesn't excuse the absence of the right diagnosis. In my experience, persistence can pay off. Definitely worth asking to see someone else in CAMHS though.

 

Caroline.

 

 

Thank you caroline. The paediatrician did tell us that he is able to cope for reasonable periods due to his IQ. I have also witnessed him 'faking' communication with his peers - it's kind of forced and you can tell that he's holding himself back.

 

 

 

[Sally44]

As well as the National Autistic Society (they have an educational and tribunal helpline), you can also contact www.ipsea.org.uk (ISPEA also have a tribunal helpline). They specialise in educational law.

I think your first step is going to be to get a positive diagnosis of Aspergers because then that needs to be addressed in school. You also need to learn about the SEN (special educational needs) process.

Is your son on School Action or School Action Plus, does he have IEPs etc.

You need to get everything in writing and you need to be heading towards a Statement. To get a Statement either the school or you as parents can ask the LEA for an assessment towards a Statement. The LEA may well refuse to assess. Then you appeal to SENDIST with the evidence and reports you have. But it is important to get the diagnosis of Aspergers as that is probably the main difficulty. And then you need to push school to support him and get professional help and advice from outside agencies (which is what they are supposed to do), such as SALT, EP, OT, etc.

When the assessments have been carried out the LEA decide whether to issue a Statement. If they refuse you can again appeal to SENDIST. If they do issue a Proposed Statement it is VERY important to get advice from the NAS or IPSEA to ensure that it is specific enough to be enforceable. The IPSEA website has alot about specifying in Statements.

The NAS should also be able to give you advice about where you can get a diagnosis. You need your child to be seen by a multi disciplinary team that have experience of diagnosing ASDs. But when you get the diagnosis, that is all you get, ie. the name ASD or Aspergers etc. They don't specify how that dx affects your child. So you then have to start gathering evidence through reports and IEPs on whether your child is making progress and where his difficulties are etc and then ask for an assessment for a Statement.

You will probably be told that they don't do Statements for children who are doing okay academically. That is not what the CoP says. Your child has issues around social communication (probably has language comprehension difficulties, takes language literally etc), has issues with emotional regulation and understanding the emotions of others, he may need access to social communication group, structure or dinnertime clubs, a social communication monitoring system such as SCERTS. There is lots that can be included on a Statement. But the fact is it all costs money. And unfortunately those that observe and assess are employed by the LEA and have to work within their departments budgets. So it doesn't really go in our favour does it. But the CoP is very clear that EVERY need should be identified and met and that any shortfall in funding should be made up by the LEA. But it is very hard for LEA/NHS professionals to recommend a level of support that is way over their departmental budget. But you can use all kinds of things as evidence. I asked the coach at my son's trampoline club to write an A4 piece of paper about how my son coped with those sessions ie. could not wait in line, found it hard to listen to verbal instructions, could not carry out physical movements even when shown, had to have an adult with him to ensure he didn't run around the room etc.

There are also other organisations that can do assessments or help financially. I think BIBIC is one you could try. I'm sure others will post as well.

A Statement lasts post 16. I'm not sure up to what age it continues. I think if they are at college etc it continues up to age 19 - but i'm sure someone else will post about that.

Your LEA also have the Parent Partnership who, although they are employed by the LEA (who fund extra SEN provision), they are supposed to be unbiased and to support parents. I have used them and found them to be useful (other parents have found them not to be of much use). They can come to any meetings with you (school or CAHMS etc). They know the educational law and they can make sure that procedures are followed. They are also good as a 'witness' to anything said or done at meetings. I asked my PP representative to take notes of the meeting and should would then send them to me.

It is a very long process. It does feel like climbing a mountain. And you do feel like you always have to keep the pressure on those concerned to be fulfilling their responsibilities. It shouldn't be like that, but that is how it is. So, remember you are not the only family in this situation. Start documenting everything. Send in clarification letters to CAHMS or school after they have discussed or agreed anything verbally with you. Get a copy of the SEN Code of Practice and read the relevant section as you progress through the system. Use the NAS/IPSEA/PP and other organisations to help support you.

Make sure you know the procedures and make sure everyone involved with your child follows them.

And if you feel they are just putting it back onto your shoulders, then complain about that in writing to them and refuse to take it on board. If you feel you have done everything possible as a parent and family unit, then it is about time they started to listen to you. As you say you are a health care professional yourself. You are not neurotic and are not imagining these difficulties. But this is a very common story. I started to raise questions about my son at age 3. He was finally diagnosed after 3 years of reading/writing and taking him to various professionals and places for assessments. It took a further 18 months to get a Statement. It is now another 18 months down the line and I am still having to put pressure on school to fulfill the Statement.

I went to SENDIST with private reports and a solicitor and we did get everything we asked for. However I am now in a position where my son is not progressing academically and probably has dyslexia and dyscalculia. It is mentioned in his Statement, but input from a specialist teacher is not specified in the Statement. I am not in a financial position to use a solicitor again. So if I end up at SENDIST again, then it will be me and someone from the NAS or IPSEA (but I'm not sure whether they would attend tribunal - I know they can, but I don't know what the criteria is).

Anyway, welcome to the forum.

 

[Sally44]

If you are specifically looking at Aspergers, then you need professionals with experience of that to observe and assess.

Keep a diary and notebook of all your sons behaviours. You can read the DSM IV criteria for Aspergers. Tony Atwood has written some good books about it. Sometimes it can be useful to identify how your child fits the criteria.

Any private reports are valid for a year.

The cost of any private reports varies. But IMO it is important not to get a report from someone who works for the LEA or NHS because they do tend to specify support within what they know their department can provide. That is not the point of the assessment. It should identify every need and specify how that need should be met in school in terms of hours of support and staffing provision needed and if their department does not provide that level of support then the extra has to be funded by the LEA.

So someone who is independent and who has experience of writing reports for tribunal is what you are looking for. You may find that kind of information via the NAS website, but also through local parent support groups. At our group we pass on any good professional eg. OT, EP etc that we have used. We also talk about local schools (LEA and special schools) and visit them. Networking with parents is very important and useful. It can save you an awful lot of time.

[faltskog5450]

Just out of curiosity, did you get sorted? It has taken us 8 years nigh on to get an official recognised diagnosis

[bb1976]

Hi i was just reading through the site to see how others go with camhs as for me the have been utterly useless. We feel that my son may be aspergers camhs have sturng us along for 4 years doing absolutely nothing so i decided to go for a second opinion. after they found this out a letter turned up in my sons file at the doctors basically saying that my son who is 11 is fine and i have mbp!!!! to stop any more attempts at a second opinion. I have been convering with three specialists who are horrified at my treatment and agree that my son sounds like an aspie. I tryed to take us away from camhs so they went to social servises and got him put on a protection plan to make him stay at camhs. if they were as good with help as they are at backstabbing they would go alot further!!! my son has attempted suicide 8 times because he feels he doesnt fit down here so whats the point in living and tells me if i loved him i would let him. apparently thats me planting these thoughts in my own childs head ppfffttt they have no clue. i know of four more sets of parents in my area being told they have mbp by camhs as we seem to be the scape goats when they get it very wrong if i had any advice it would be avoid them at any cost..

[Tally]

This post is over two years old and you have already posted an identical post on the forum.