AIBU or are CAMHS really REALLY SHIT

[Anonquestion]

I feel like I have been trapped in some sort of nightmare with them. My daughter is now 14 yrs old and was first seen by them 3 years ago when her behaviour started to severely deterioarate with the move to secondary school. We first did brief solution focused therapy with her, 6 sessions over about 5 months due to staff being off sick, on AL etc. It made absolutely no difference, if anything it made herore anxious. This was followed by 'family therapy', which she hated; a lot of pressure was put on us to have it filmed for staff training which made things worse. This was with another 2 members of staff, one was an ex-pschiatric nurse the other had a degree in psychology. We were then told there was nothing more they could do but send us on a parenting course run by the early intervention service, this was absolutely shite, really obvious stuff like 'don't hit your children', 'try not to lose your temper', stuff which we already knew. Me and my husband feel very strongly that our daughter's got ASD and she is now being seen by someone else (another ex psychiatric nurse) who is trying to get her seen by a doctor for a diagnosis and also maybe looking at giving her some anti-anxiety medication. The whole time we have been treated so badly, the first two years as though her behaviour was due to really bad parenting - we're not perfect but I really don't think we are that bad. All of her behaviour suggests to me she has aspergers, I have worked with other teenage girls who have it who are so similar to mine; coped well up to adolescence but now really struggling, meltdowns, routines extremely important, can't change plans, v inflexible thinking, reeling off sentences which are direct quotes from books, lack of eye contact, obsessions with different hobbies then dropping them suddenly etc. I just feel if anyone actually spent some time with her and got to know her it would have been pretty clear. Instead we are treated like Munchausen's parents for even suggesting she may have ASD, treated like we are terrible parents. I'm at my wit's end now and don't know what to do. I can't believe how awful our experience with CAMHS has been. Am I being unreasonable?

[FloatIsRechargedNow]

Quick - get yourself to Special Needs Board, SN Children has the most traffic. Lots of very experienced posters there.

[Ineedmorepatience]

YADNBU!!

Its happening everyday, everywhere! Females on the autism spectrum are missed and their difficulties dismissed and their parents blamed!

Sorry you are having to deal with this

[PhilPhilConnors]

YANBU at all.
Ds2 was referred there as he goes through stages of feeling suicidal and demonstrates how he's going to do it, CAMHS have told us it's normal, do not understand his diagnosis (ASD/PDA - computer says no) so have twisted things to be Dh and my fault. They then discharged him.
Bunch of useless, unhelpful tossers!

(Disclaimer: I do realise that in some areas CAMHS are amazing. Where I live they are well known for being crap)

[Thornrose]

They are awful. I'm also trapped in a nightmare situation right now.

[FiveGoMadInDorset]

We are in the same situation, what's worse I have just finished working for the NHS trust in our area who deliver CAMHS, DD's school did her report in January, the SALT said in her report 3 years ago that DD has Aspergers in her opinion and we still don't have an answer from the Peadiatrician. Dd moves Sept 17 to secondary school and would like something in place before then. And I agree they get a small snapshot, they haven't had to do the day to day living which is really tiring

[Anonquestion]

Thank you for your replies xxxx
I just can't believe how crap they are. I love the NHS dearly and they are normally great where i live but this would be funny if it weren't so bad. Ironically I think everyone's mental health has suffered a lot since we got involved with them. I'm so, so sad about it. And feel so powerless. I think they have us down as moaners now so take everything we say with a pinch of salt. ARRRGH.

[BranTriLlygaid]

It's not just you, it's like they go out of their way to both not find an issue and blame the parents for any negative behaviour. Never heard a good word about them, useless service, hellbent on doing as little work as possible.

[Anonquestion]

phil I am so sorry to read about your son feeling suicidal, that must be incredibly difficult. And they discharged him! For shame. X

[Lovemylittlebears]

Hi Anon, push for an assessment for autism. If your local authority isn't any good/slow you could do this privately. The ed psych report could then be used as weight for you to get a diagnosis from the paediatrician or whomever does it in your local authority. Depending on your daughters language level you could look at either CBT/ACT probably from a private psychologist or if you are in an area with a decent IMAP service you could try and get a referral. Then you could look for a professional that specialises in supporting high functioning children with ASD and anxiety to work on giving her some strategies or teaching skills that will have a positive impact on her behaviour/emotions. There are some nice books out there - when my worries get too big (don't know the author), navigating the social world (Jeanette mcaffee) and the Michelle Garcia winner resources are great for teaching social thinking (if this were an issue and related to any concerns/behaviour). Good luck x

[Theonslostbits]

Has your daughter been assessed at school by eg psych and language and communication? I took both reports with me. Language and communication assessed my son and picked up on subtle things, lack of inference skills etc. Took 3 years for asd diagnosis (and the threat of making a formal complaint). However camhs have been brilliant (since I complained)

I totally understand how frustrating it is dealing with camhs. All you want is answers and help and it feels like you have to fight for it.

[LadyCallandraDaviot]

I know it's different in different areas, but the main problem with CAMHS is they are so stretched - more and more people need the service, and more and more cuts are being made. Waiting lists are awful, which means symptoms get worse etc. Things do get missed/misdiagnosed, but it is not usually deliberate laziness, just overwhelming workload. One way service managers try to deal with this is to limit the caseload which sometimes means only the absolute most desperate cases meet the threshold.

I'm sorry they have not been able to meet your needs but please don't be down on the service as a whole.

[Anonquestion]

Thanks for those suggestions of books Lovemylittlebears. What is an IMAP service? We have tried for such a long time to get an assessment done, CAMHS are at least now going to do this. Ed psych came into school and observed DD for 1 DT lesson and said she had 'no concerns' in her report. She did say she would come and look at strategies for coping with anxiety though. I think it seems that even professionals expect girls with ASD to behave in the same way as boys with ASD, but all the literature I have read seems to suggest otherwise; that they mask it a lot better and then go to pieces at home. I am starting to think maybe we should go private however the enquiries I have made show that it is REALLY expensive and we would be paying 1000's. I'm not sure what would be quicker at this stage either as now we have gone through all their hoops we may get assessment done soon. OTOH, we may waste another year waiting. Aaargh this is so hard :'(

[Anonquestion]

Another thing which they have started saying to me is 'would she benefit from a diagnosis?' Which makes me feel even worse, like I want a diagnosis for my own benefit or something. I understand that resources are stretched but actively discouraging parents from seeking help / diagnoses seems like a very foolish strategy!

[PhilPhilConnors]

They always seem to see a diagnosis as a negative thing (which IMO is another reason to find them shit!).
It's far, far more damaging to go through life well aware that you're different and taking on the negative labels from others. Far better to have a diagnosis and understand who you are and at least have the chance to find your niche.

[mummytime]

The thing is CAMHS varies from place to place, partly depending on the commissioning group. I also think it depends on which individuals you meet within CAMHS.

However my advice is: get to the SN boards here - lots of good advice - especially SN chat; look at the NAS and see if there are local groups, they may be able to give you advice on the local situation. You don't need a diagnosis to get involved with NAS!
The thing is a diagnosis is useful, but you can often be just left once you get one. The key thing is to fight for the practical help you think she does need, and read up on stratergies, as you may not get that much with a diagnosis (for almost all good accommodations/strategies for ASD there is no harm is trying them with someone who doesn't have ASD).

[SuburbanRhonda]

In the meantime, OP, diagnosis or not, she will need help to manage her anxiety.

The Teen Anxiety Workbook is a great resource - you can buy it from Amazon or this link is the whole book in pdf form.

[Anonquestion]

Thank you very much for that link, suburban, I have downloaded it. I think that they want to sort out the anxiety first and then they will look at assessments. It is so frustrating that we have been worried about her anxiety for over 2 years but until the last month thought we were exaggerating and just crap, lazy parents.

[ThisisMajorTomtoGroundControl]

Our camhs is 'labels aren't helpful' which delayed an ASD diagnosis five years. The support my child gets is good and I find if I ask them to back me up with school problems they do. His therapist is very good. But they are a bit of a mare when it comes to ASD. It's not about labelling it's about getting a descriptive diagnosis to help services and schools put interventions in place. They are as a service dangerously under funded and overwhelmed with children they simply cannot help because they just don't have the resources. So yabu and also nbu because it's not all camhs fault.

[AugustaFinkNottle]

YANBU, though what is mostly shit about them is that they are ludicrously underfunded. And this effing government tells us they care about child mental health. If only.

[PhilPhilConnors]

They are dangerously underfunded, yet they waste resources on inappropriate parenting courses (non-ASD specific courses for DC on the ASD spectrum) which are never going to work for families who are engaged and seeking help for their autistic children, they waste resources on family therapy which seems to work on the assumption that parents need to up their game, when actually a diagnosis and the limited support that brings would be much more useful to families.
They seem to spend vast amounts managing families to discharge and holding them at bay, gatekeeping the actual services that would arguably lessen their workload and loosen up some much needed funds.
So yes, they are underfunded, but I believe they are well overdue a shake up, and in the meantime they continue to let families like the OP's down.

[LyndaNotLinda]

They are shit in my area too but they are also not responsible for assessment and diagnosis. I agree with everything you said PhilPhil.

DS was referred a couple of years ago and I was told that a diagnosis 'would not be helpful' and that DS's problems were caused by playing violent video games (Minecraft).

I would go to your GP and ask for a referral to a paediatrician for an assessment for your DD. You might find it useful to write down a list of your concerns - it may be useful to split them under different headings (behavioural, emotional, social, physical etc).

[AugustaFinkNottle]

I suspect they put on the stupid parenting courses because people like local authorities will fund them as an excuse for not putting in place decent social services help for the parents of disabled children.

[Anonquestion]

This is it exactly - the parenting course was such a waste of everyone's time and resources; it made no difference at all. I understand that like any service they must take their budget into consideration but the pre-occupation with blaming us as parents for everything is awful. I have been told countless times that a diagnosis won't help much, that DD will still have these issues if / when she is diagnosed. As if I thought a diagnosis would change everything or she would be 'cured'. It is really insulting. Also trying to call them is almost-impossible, they never return my calls unless I call back about 3 times in a day. The staff are so rude and always make me feel like a burden. I hate it so much.

[IHaveBrilloHair]

My 14yr old is cureentry in care because of the shit CAMHS and ss have put us through.
Still no one will listen and I'm just the terrible mother who has a daughter who hits her and it's all my fault.

[Anonquestion]

lynda thanks for the suggestion. I had taken DD to GP about 5 times due to her anxiety, insomnia and low mood but not for a general check up.