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?

www.autism.org.uk/professionals/health-workers/screening/genetics.aspx

Andnow. That is not what I said. I have not said that 'poor early relationships cause ASD'. You are completely twisted my words and I'm not sure why. I have explained myself and won't add anything further.

It's important that parenting courses and family therapy are not seen as a criticism. It should be framed as support for the family having difficulties, not pointing the finger at inadequate parenting as the cause of the problems. It's understandable that parents feel defensive and feel blamed. I felt the same when we were told we needed parenting sessions. CAMHS could do more to make it clear that it is not about blame but about support.

Scientific findings aren't up for debate until scientifically proven otherwise. Has it been scientifically proven that ASD is not a neurological condition then?

That's the awkward thing about science. Its true whether or not you want it to be.

Still living that's why I asked the question if you aren't suggesting the link between early relationships and neurological conditions like Asd what point are you trying to make?

The biggest issue for me is that not enough doctors work in CAMHS are involved in assessments. They are in multi-disciplinary meetings but the information they receive is third hand and based on the interpretation of a nurse/social worker, who evaluates on the basis of applying disseminated research or points about it wrapped up in protocols. That is very different from someone conducting an holistic evaluation who has produced similar level research and who is able to analyse and apply and communicate complex conceptual findings independently.

I do not want to hear we are recommending x in accordance with protocol from somebody who cannot tell me why or what the protocol is. I wouldn't find that acceptable in relation to physical health and no hcp would expect me to do so. It certainly isn't therefore happening in relation to MH and not in relation to my child albeit an almost grown up one. The latter bringing with it a while new layer of opaqueness for the over 16s and under 18s which in my opinion brings more uncertainty to the table which hcps then use to obfuscate further inadequacies in the system or their understanding of it.

Yes I am sure CAHMS can be terrible at times. But I have also seen a family rejecting everything CAHMS said as they felt it was blaming their parenting. The advice to me seemed good advice to deal with anxiety. But the parents refused to change anything, and just blamed CAHMS.

In our area, CAHMS were the only service diagnosing ASD. A referral to a pediatrician (which is initially what we had) would result in a counter-referral to CAHMS.

Anyway - I wanted to thank all CAHMS workers who have posted on this thread, and do have a huge sympathy for your predicament.

However.

It will not be obvious from my previous posts - I was venting, not constructing a reasoned argument - I actually do not and have not ever objected to the idea of parenting courses and family therapy. It's the fact that once you've been through them and it became clear that you are already doing everything you ought to, there wasn't anywhere else to go.

Worse yet, if you were told to do x, y, or z, and you said you were already doing it, being told that you can not be telling the truth because you'd not be having the problem if you were..

Well. Can you imagine the despair that this attitude causes ? Not, I hasten to add, because of the slur on my honesty. I really could not care less what their opinion of me was.

Besides, I have always maintained, and will continue to maintain, that I would far rather take any amount of suspicion against me, than have an abused child fall through the net because their abuser is good at bullshitting
and the professionals too trusting.

No. It's because their refusal to believe that your relationship with your child is strong, and open - nay, desperate - to further strenghtening is denying you access to further help

So, if told that your child is suicidal because you are refusing to facilitate the relationship with her father, when that isn't true and there's nothing further you can do about it, or that you are not accepting of her.AS, when it's not true , or that she is not eating because I put my work before her (I was at the time shelving books part time, term time only, because I could not do my previous library job with DD's needs)... When the person you've been told is the gatekeeper to help available is insisting that you are lying to them, or that you must turn black into white before you'd be admitted through..

Well, I'm sorry, but at that point, your sympathy for them evaporates.

Thing is, it wasn't just me, with that particular CAHMS, at that particular time. A colleague with a son a couple of years younger than my DD, and with very similar problems, was experiencing the same, and they were seeing different CAHMS
workers.

So, to re iterate, it's not because of slurs on my parenting ability that I had a problem, it's because their refusal to believe me that I was following their advice, or insistence that I do the impossible, barred my daughter's access to appropriate help.

Now,reading all your posts here, I wonder if that was simply because there was no other help to give ? If so, honesty would have been appreciated, so I could have stopped.wasting my energy and their.time.

One.good thing did come out of it though. My is an intelligent girl (which was, in all honesty, part of the problem), and seeing how hard I fought for her made her trust me more, open up to me more, and strengthened our relationship further, which helped us survive until she could finally be seen and treated as an adult.

So, in a way, CAHMS.did help us. Just not in a way that anyone sane should really consider as best practice.

AndNowItsSeven - I think she (or he) was just saying that there are cases where children may have some features/symptoms similar to neurological conditions that are in fact not as the result of neurological conditions. For example poor communication skills could be a feature ASD or could be a result of problematic family communication style, or neglect, or trauma or many other things. It's not black and white and not easy to diagnose conditions.

What majestic said. But then I have already explained what I meant but somehow people are reading other things into it.

Children who have been severely traumatised (eg in foster care) often display autistic like characteristics that are not ASD but may seem like it at first. They respond to psychotherapy in a very different way to children who have ASD and if treated properly may in many cases end up with the Autistic like characteristics not there anymore.

Incidentally, for anyone who is as desperate about their children as I was at the time, and feels they are not getting any appropriate help, here is what helped us:

1. CBT. If you can't get any on the NHS and can't afford private, use online resources and buy workbooks. If your child won't engage, do them yourself. It might just be enough to keep you from becoming suicidal.

2. vitamin D3 supplements. UK gets so little su.shine that most of us are deficient. You might like to try them too.

3. B12 shots (if deficient). GOogle deficiency symptoms, they might be familiar

4. appropriate medication. This might be trial and error, be patient. DD's first sent her manic, second made her hallucinate, third made her able to finally leave her bedroom. Still have ways to go, but now we feel we have professionals on our side, which helps.

5. home educating. Not everyone is in a position to do this, don't feel guilty if this is you. If you can though, and your childvstruggles
   with school, give it some thought.

6. gluten and caseine free diet. Of course,vwe first had to get her to eat anything..I'll be happy to write more about this if anyone else is struggling.

I'll be back if I think of more !

Allegra thankyou that's really helpful. Moving my DS schools helped him. Strangely enough all the things I was saying that weren't helping him in the meetings and being ignored were gone, he calmed down an awful lot.

When I mentioned about the service not being available 9-5 I didn't mean individuals. I don't expect professional staff to be at their desks all the time but I do expect the offices to be open at 9.20 when we have a 9.30 appointment. If a,service is restricted to 9-5 (which is unacceptable) then I think a minimum expectation is that it I available, with offices open and phones manned between 9am and 5pm. If staff are so slack the hours are closer to 9.30-4.30 then actually I think the unit manager needs to be there five days a week. I did complain. The CAMHS overall manager batted it away; the CCG director was very interested.

I've been out so not been able to respond earlier but I really wanted to take issue with stilllovingmysleep's statement:
"I don't know where you get the idea that what your son is doing is neurological. You really don't know that. It's an opinion."

Well, it's an opinion that his consultant paediatrician has ventured. So I'm inclined to go with his opinion, given he's actually met him. I don't know what your job is exactly but where I live, only qualified paediatricians are able to make diagnoses.

Thankfully where I live CAMHS has now been completely taken out of the diagnostic pathway. As another poster recommended, I will use his DLA if he needs any more formal mental health support - I won't be touching CAMHS with a bargepole.

We have no doubt that the behaviour my son shows is intrinsically linked to his ASD, but if I were to have an honest frank discussion right now with our (ex) CAMHS therapist, I'm sure she would say we were hard to work with because we were set in our beliefs, they also had the opinion that if we could only work on our relationships we would see an improvement etc etc etc, pretty much what the CAMHS posters have said on this thread.

And this ^^ is what was so fucking frustrating. The belief that we knew nothing.

We have spent the last few years working bloody hard, on our own, to get to a point where we have something nearing a family life, instead of the hell life was whilst doing the parent/child relationship in the normal, strict boundaried, acceptable way. We were attacked by ds2 several times a day, he was in meltdown constantly.

His ASD/PDA diagnosis was such a relief, made so much sense, and the strategies work.
We know that how we do things works for Ds, we are not set in our ways needlessly.

Perhaps the therapists at CAMHS are so jaded by some parents, but with us, they would not accept anything we said.
We know how to get the best out of our DC, and we were clear that we have strategies that work.
We wanted support for ds's suicidal times, which are directly linked to school (with OT diaries and reports as evidence).

Because the therapist couldn't see any of this behaviour (because he masks), they decided we were yet another family making shit up, dramatising our home life, being crap parents but lying through our teeth. They wanted us to bring our discipline methods into line with school's, cos, you know, he's perfectly fine at school (masking again), so the problem is obviously at home In reality, at home we are often firefighting because school treat him as NT, and he can't cope with it. Now at school he is often refusing to work, cannot work alone, is angry as soon as he steps out of the school gate because of things that have happened during the school day, but yeah, he's fine at school

The therapist showed such a lack of understanding of ASD, blamed us for parenting him as an ASD child, said we should be treating him as a normal child, when we've been there, done that, got the scars from the constant attacks. We cannot treat him like a normal child, if we do, we can't cope. And that's not because we're obstructive shit parents getting it wrong, it's because he has ASD/PDA. He has a neurological disability. It's because we are good parents responding to his needs whilst still working carefully to improve certain areas.

If any expert suggested that a child with a physical disability couldn't walk because his/her parents were pandering them and not treating them like an able child, there would be uproar! So why is this so acceptable when it comes to neuro conditions? ASD, ADHD and others seem to be so often considered parenting issues.
Our Ds has a diagnosis, a neurological disability which means he processes everything differently, yet they will not acknowledge it, they won't accept that we are bloody good parents who have improved our home life no end in the last few years, they won't accept that we know our DC well and treat them as individuals to help them each reach their potential, and I'm sorry, but their opinion of us being rigid and obstructive is bloody offensive, and from where I'm sitting, in our case (and many others I personally know of in my area with autistic children) it's CAMHS who are being rigid and obstructive, but we're all too scared of what they could do (reports to SS have happened with disastrous results). Threads like this are a godsend because we can actually be honest!

My son can be suicidal and will put things round his neck and tighten them. We were discharged with a letter saying this was normal for children with ASD. Really? Fucking really?

I am not going to follow their suggestions because if I did, we would be accused of not keeping our DC safe (ds2 and his siblings) and they'd be right - we know what we have to do, but by doing it, CAMHS have us down as obstructive and not accepting their "support"

So no, I will not sit and accept someone who doesn't know Ds telling me that I've got him wrong, and I now won't accept support that I know will make things worse.

Dh and I had to fill in some forms for Ds, they identified him as highly anxious.
Ds was asked to fill in the same forms for himself, he answered all the questions in a way that showed no anxiety present at all, partly because he was too anxious to answer honestly, plus demand avoidance kicked in and he made up all the answers!
CAMHS went with his answers only. Said he was fine, no anxiety at all.
The journey home after that appointment took three times as long as it should as I had to keep stopping in a safe place as it was dangerous to drive with him in meltdown.

He is upset that no-one understands him, but his condition and the way it presents means that he cannot open up to people, cannot be honest about how he feels. In these circumstances I will advocate for him, but when no-one will listen because of their own preconceived ideas with no basis in fact, what hope has the poor boy got?

Sorry, bit of an angry rant!

He's got hope, Phil. He's got you.

Thank you Allegra

I thought stilllovingmysleep made sound points.

I understand that each person hears them and applies them through their own filters to their situation sometimes getting very different inferences

I thought her points were sound and well made. The responses on this thread explain many of the difficulties faced by both parents and workers. Sometimes it is hard to hear what the other person is saying accurately. Sometimes it is difficult to absorb the information and apply it. This is true IMO for both sides of this coin.

Yes I agree there were sound points, but sometimes they don't fit some families, and that doesn't make those families wrong. Actually, indirectly they were very helpful with Dd, I asked at one of ds's appointment about dd's anxiety which went through the roof in January (ASD and anxiety run in the family!) the therapist gave me several pieces of advice which were incredibly helpful. Dd isn't autistic, so the advice we were given worked. She wouldn't give us any advice for Ds, just went on about how we were putting too much emphasis on ASD and PDA, which was very unhelpful.
Ds is a tricky little thing, no-one is capable of meeting him and working him out. We know him well because we live with him and we are his safe place.
We tried our hardest to take what CAMHS were saying constructively, comply with the things they told us to do, but we couldn't, not without ignoring ds's needs and making things much more difficult, if we persisted, knowing that it made ds's life much worse, we would be very bad parents.

I may not be a qualified expert, but I do know Ds well enough to be considered his personal expert, as are most parents of autistic children. As such, my comments about our situation are sound and well made, but it's funny that parents are rarely acknowledged as having the wealth of info about their child. Ds's therapist's opinions hold more weight than mine, and she only met him once when he was masking.
I find that quite frightening.

That reminds me, Ronald. When dealing with people with ASD, it is very, very important that your language is very precise, as a certain tendency towards being literal is a (well known) characteristic of the condition.

Therefore, do not assume that your interlocutor has heard what you wanted them to hear. Check, and if it turns out they misunderstood, rephrase, until you are sure that your point came across.as intended.

If you are dealing with the parents of a young person with an ASD, or suspected ASD, especially if they are going through an especially stressful period, bear in mind that the condition does have a genetic component and that the parents might be on the spectrum themselves.

If they are blowing up in your face because they feel you've attacked or slighted them, try not to take it personally, but think if there was any way your words might have been misunderstood, and rephrase.

To give you an example, my DD's therapist, trying to get "to the root of the problem", ie exploring what she believed to be the trauma of my separation from her father and his absence from DD's life, kept saying "You must be so upset that this happened".

DD wasn't. She wanted help with dealing with ongoing trauma of her daily life, but did not know how to say so and was waiting for someone to guess. I tried to help by reporting this when she told me, but I was cut short as "putting words in her mouth wasn't helpful". But she was being told that she must be upset about her dad (can you see how that sounded to someone prone to literal thinking?), she started to think she was a bad person because try as she might, she just couldn't care.

That's a brilliant point Allegra, I have ASD and I have no doubt that communication difficulties played a part in our experience.
I can express myself fine in writing, in words not so much, yet communicating via emails was not allowed.

I haven't found CAMHS to be very good for my dd either. They would say to me that they felt her school was inappropriate for her but would not put this in writing.

Oh, and another interesting thing I noticed - when DD was under CAHMS, any attempt to help out by reporting things DD.asked me to tell them in order to help them not flounder and concentrate on wrong things was seen as... I don't know. Obstructive ? Pushy ? Anyway, they did not like it, I was never heard out and was cut short every time, or told to save it for family therapy.

Yet since we've been dealing with adult.serviced, my.presence and help in appointments has been seen as a positive and a sign that I am engaging with her treatment and giving her necessary support. And medical professionals are far more willing to share information with me now she's an adult, all they need is a nod from DD.

Phil, it sounds as if you have had a very hard experience overall not just with Camhs but with your children and their experiences / behaviour / condition (whatever we can agree to call it). I would never dream of not listening to your (or anyone else's) experience and of invalidating it.

You write though: 'Yes I agree there were sound points, but sometimes they don't fit some families, and that doesn't make those families wrong.'

This is correct. We don't always get it right God knows!! I certainly don't. Not as a parent. Not as a therapist. I work with families and try hard to work with them not against them. I do not have an agenda (as some people have said about us Camhs workers fairly conspiratorially). Nor am I rigid. At least I don't believe I am, I really don't.

Phil (and all the others), clearly you have strong views about how you see and think about your child. Of course you do. You are the parent and know him best. We all have very strong views about our DC! This is completely natural and expected. Not an issue for me at all.

However: can I ask you an exploratory question? Could you consider, giving some of us the benefit of the doubt and in good faith, that there may be aspects of how you think about your child that a professional may have something to add to? Or even to disagree with, based on their extensive experience of working with many many families and children and based on their genuine wish to help and their genuine interest and passion in this work? Camhs workers are not out to get you nor do they have an 'agenda'. They genuinely want to help and mostly love their job. I know I do. I love my job and there's nothing, nothing better than being able to work well with a family and see a previously unhappy child become happy and confident. I have worked with children over the years with severe neurodevelopmental conditions and others with anxiety / suicidality / depression etc. Overall, with many many children and families over the years. As I said above, I claim no amazing expertise and I don't always get it right. But there has to be some trust in us professionals and some understanding that we do this day in day out and have studied for years and love our job... and thus may (potentially) have something to offer. Something that may, in some cases, even disagree with aspects of your views. I ask you to open your mind to that possibility, that someone who at times disagrees or sees things differently may however still have your best interests at heart.

I also think she made some sound points. Unfortunately, they were rather drowned out by her assumption that DS's preliminary diagnosis was 'just my opinion'. That wasn't my filter - that's what she actually typed. Even though I'd said that I was reporting what DS's paed had said.

That tended to colour everything useful she wrote unfortunately.

And that failure to hear what parents and children are saying is, I suspect, behind an enormous amount of the frustration that a lot of parents have.

Allegra's DD's therapist accused her of 'putting words in her mouth'. And yet she was the one ascribing emotions to her DD that she simply didn't feel! So on the one hand, the therapist is not listening to Allegra's view of what the problem might be but instead has come to her own conclusion and is trying to make the evidence fit it.