So, CAMHS won't help us. What can we DO about an 8yo who wants to die?

[TheCountessofFitzdotterel]

Yesterday ds1 had an assessment with CAMHS and they said they couldn't offer us any help, because what we were already doing as parents was fine.

Today a lucky young person on their driving test got to demonstrate their emergency stop for real when ds pulled away from dh and stepped out in front of a car (our school is round the corner from the driving test centre).

I'm at my wit's end. All I came away with was a reading list of books about helping children with low self-esteem. Which of course I have ordered and will read, but I kind of hoped someone with actual experience and knowledge would be able to help, y'know?

I have hunted high and low for private counselling which we would happily pay for but it's hard to find anyone who will work with children this young (the ones that say they do children mostly seem to start at 10).

He's a lovely kid, has friends, hobbies, empathy, is very bright, but massively oversensitive and emotionally much younger than his actual age.

I can't believe that actual repeated attempts to self-harm, plus impossible behaviour at school (it was them who referred him to CAMHS) - oh, plus episodes where he thinks I am someone else/a monster in disguise and am trying to hurt him - are not considered enough to actually help us. What do we do? Other than what we are doing now, trying to parent him well and keep him safe?

[Peterandrew29]

Your son shows blatant signs of Asbergers. Self harming is an issue.By my experience CAMHS are not fit for purpose . They recognised 1 out 6 issues between my boys. Utterly clueless. That list includes Educational Psychologist , LS teachers clueless , the list goes on.
Look on PlanetAutisms blog page , the info sheets are excellent. The articles on her FB page about, eating, homework, anxiety etc are excellent.
I am now trying to get a diagnosis of PDA , Pathological Demand Avoidance Syndrome. Check out the PDA Society website. Also look for Dyspraxia, Dyslexia, dyscalculia , the co Morbid issues.
Hope this helps .xx

[TheCountessofFitzdotterel]

Thank you all x

Maryz, I'm so sorry about your ds's best friend. How awful for him.

Goldmandra, he isn't distressed about wanting to die because he thinks he deserves to be dead. He talks about it with relish. I think if he stopped wanting to for long enough, it might upset him. But even when he appears to be having fun at the moment it's there in the background.

Re school holidays, yes, there is definitely a pattern. He's worse at the end of the school week and the end of term. Though tbh it's been bad every day since the CAMHS appointment nearly a fortnight ago. Still, 12.30 now and school haven't rung yet, so that's something.

His new one now is thinking me and dh are ghosts. The moments when he loses touch with reality are getting more and more frequent.

Took him to GP this morning and the GP said he would do the referral for the ASD assessment.

[ChaiseLounger]

I too agree with Gold and Mary, as per usual, that you must take care of yourself.
I have been on my knees.I wish I had done things differently. Let MN support you.

[Goldmandra]

I agree with Maryz. You need to look after yourself because nobody else is going to do it. I have been on my knees, on medication, in severe pain from headaches triggered just by phone calls and stressed to the point where I could barely function at the most basic level in the last few years. The system ploughed on, failing to meet my children's needs regardless.

I think it's brilliant that your DS is able to talk to you so coherently about his thoughts and where they come from. I'm sure that will help him a great deal.

Is he distressed by the fact that he wants to die? My DD2 has had suicidal thoughts and been very upset and frightened by them. She becomes terrified afterwards that one day she won't be able to stop herself.

I do hope you get to talk to someone who takes this seriously and gives you some decent explanations for what is behind this soon. The stuff about the tv programme seems to create more questions than answers.

Keep a note of whether his behaviour changes during the school holidays. When school has been a problem for my two, we've always had about a week of crash and burn when the holidays started followed by much more relaxed children until the end of the holidays started looming large again. Having both in provision that met their needs better has meant noticeably nicer starts and ends to the holidays for us recently.

[TheCountessofFitzdotterel]

Maryz, it's funny you mention support for me - I was feeling quite weepy about it the other day and thinking how ironic it was that it would be easier for me to get help, if I went to the GP and said the situation was making me depressed, than it is to get help for ds!

DH is coping worse than I am tbh. He lost a close friend to suicide 12 years ago so he tends to be more pessimistic than I do about the chances of it actually happening. Also, I have Mumsnet etc as a support network.

[TheCountessofFitzdotterel]

That's reassuring re bipolar.

Literally a couple of minutes after I posted that, when I was just in the process of answering Goldmandra's question about whether he is aware he is different from his peers, school rang me to go and pick him up again. So we had a nice quiet afternoon of Latin and logic puzzles and he was calmer at bedtime than he has been for a week.

I asked him earlier about the feeling different thing and he thought for a while and said he doesn't feel different or strange. He definitely integrates very well with other children - if you saw him in a playground you wouldn't get a sense he was on the edge of things at all.

He is definitely trying to work out where his feelings come from, because he said two interesting things. One was that he thinks he gets the 'wanting to die' thing from watching Little House on the Prairie on tv, because apparently there was an episode where a girl who has lost both parents says she wants to die and tries to walk into a lake.
The other was that he doesn't understand where his feeling of being rubbish comes from because he doesn't think we have told him anything like that. I got one of the books CAMHS recommended about helping children with low self-esteem, and it came with a storybook called 'Ruby and the rubbish bin' where a little girl thinks she is rubbish because people told her she was. So that's kind of reassuring and it's also very good that he is consciously thinking that his feelings might have come from somewhere, rather than just accepting they're true, which is what he does most of the time.

[Goldmandra]

IME the assessment process is useful for parents and people already working with the child in terms of bringing new understanding and ideas for support. The diagnosis is useful as a quick way (although it is rather a blunt instrument) to communicate the child's needs to new people and is the key to certain types of provision, e.g. autism bases in secondary schools, support from specialist teachers.

It sounds like you have a very clever son! I wonder if his awareness of being very different is fuelling his feelings of not being deserving or wanting to die? My DD1 always felt that she was weird in comparison with the other children although getting her diagnosis and understanding why she felt like that really helped her.

My DD2 used to think I was someone else disguised as me or an alien possessing my body and she would stare into my eyes to look for clues. It was quite unnerving. I've read somewhere that it used to be common for children with ASD to be misdiagnosed with bipolar disorder so try not to worry about those similarities for now.

[TheCountessofFitzdotterel]

Back on my computer now so I can answer properly

First, thank you so much everyone who has commented. It is really helpful to know we're not alone and to have people who can explain all this stuff to us.

Goldmandra and Blonderoots, thank you very much for answering my questions. So as I understand it, it's the process itself that is helpful rather than the yes/no answer to the does he/doesn't he have ASD question. I can see how that would work.

We are definitely going to get him assessed for ASD - we have a GP appointment on Monday to start the ball rolling.

We are also writing to CAMHS to correct the errors but I'm inclining towards continuing to look for help privately rather than pushing for them to see him again - thanks for the links on here. The Enhanced Mainstream unit at school (who are very helpful) are going to ask for recommendations, too.

The last few days have been strange. He's been very preoccupied with wanting to die and firmly believing he doesn't deserve to live but has had occasional flashes of hope when he's been willing to briefly entertain the possibility that he might be wrong. Bedtimes have been difficult because he has been refusing to go to bed because he says he doesn't deserve a bed.

His brain appears to have gone into overdrive and he can't stop thinking about all kinds of random things like gravity, philosophy, the population of the world, etc etc. Sensible things, not random babble. All of a sudden he's talking like a 'gifted' kid, which he has never done before. He's asking loads of questions and he seems to know stuff I didn't know he knew (eg today, about the population of different countries). He tricked me into admitting Father Christmas wasn't real last night and was very pleased with himsef! This morning he started talking about feeling very intelligent today. I can see similarities with bipolar friends in their manic phases.

He has also mentioned that sometimes he's worried the teachers are monsters in disguise and the other night he was looking at me strangely and told me he was worried my eyes might be lasers.

So. Things are all a bit weird and unpredictable and we're putting new window locks on some upstairs windows (I don't think he can open them but just to be safe.)

[Goldmandra]

I don't mind whether he is or isn't diagnosed as asd, he's still the same kid, but how will it actually help?

The assessment process should involve a range of different professionals observing and assessing him in school, at home and in clinic plus conversations with you about his behaviour and developmental history. The resulting reports should highlight what he finds challenging and make recommendations about how to help him. Hopefully, by the end of the process, you will have a clearer idea of what is making him feel suicidal and be able to make changes or school will make changes to make life feel more manageable for him.

I would accept the assessment, purely because it gets people involved who can help, whatever the eventual outcome. Some CAMHS do refuse to see children with ASD which I think is probably discriminatory but it isn't the case in our area so I don't know how they justify it.

Are you keeping a diary of behaviours that concern you? That might help you to identify a pattern to them, e.g. always worse on Sunday night because of going back to school the next day, more stress when he's been in busy social environments, etc.

In theory there are beds available for children at risk of suicide but in practice things usually have to be ridiculously bad before a child is admitted to one or given access to the on call CAMHS practitioner. I'm not saying don't go to A&E or ask for help. Just make sure your expectations of the help he might get aren't too high.

Why didn't he feel he deserved a bed? Is he aware that he is different from his peers but doesn't understand why?

[BlondeRoots]

Gosh, TheCountess, I have just read through the entire thread. You are having a tough time, bloody hell. Really brings back memories of my DS a few years ago.

My DS was diagnosed with Asperger's Syndrome/PDA eventually, but prior to that we had a hellish couple of years trying to get professionals to take his issues seriously, and trying to prevent his school from effectively demonising him. We had all the 'reduced timetable' stuff and exclusions, too. Its so upsetting and so very, very draining!

In response to your last post:

Firstly it's not what they said before so why the change? Why does more suicidal = more likely to have asd?

Depressive, suicidal behaviours can be an alarm bell for ASD. Not alone but considered along with other issues. Maybe the school have given CAMHS a picture of what he is like there and it has raised ASD as an issue in their minds? i don't know. But its good that CAMHS are talking to the school, too. It will help build a bigger picture of your DS's issues.

Secondly aibu to have got a distinct whiff of them fobbing us off/ saying it to get us out of their hair? They added that they don't deal with asd-related issues..

Possibly, yes. The 'we don't deal with ASC' is bollocks. CAMHS were involved in the multi-agency ASC assessment of my DS and he was getting Tier 2 child psychotherapy with CAMHS from the age of 5 yrs old. We have had doe very good support from CAMHS, but e have had to push them for it and complain/bat the ball back t them at times when they have said 'we are not sure where to go from here'. They can't just 'get rid of you', especially if you are now in the system and can re-refer.

And your third point. There is no magic solution. And solutions will be different for every child, including every child on the spectrum. For our DS, it has been a combination of things:

• psychotherapy through CAMHS for a while although he no longer has this)
  
• sensory integration OT, which is helping him regulate his emotions and manage sensory overload
  
• (BIG BIG one) a change of school to one with an ASC unit with specialist staff (where he is not demonised, and they use a range of strategies to support him emotionally as well as academically).
  

I have found it helpful not to project into the future, but to deal with what is immediately in front of us at each stage, and for yo, right now, that seems to be getting him assessed so that you (and his school) have some understanding of what is actually going on with him.

I could go on and on, but have waffled long enough! Come over to the SN boards, too. They have been a lifesaver for me over the years x

[ImperialBlether]

Oh what a distressing time you're having. I'm neither use nor ornament on this but I hope you get some sound professional help soon.

Those inaccuracies are very worrying - I can't see how they can be errors in transcription - if you'd said you saw grandparents 1-2 times a week and they'd typed up 1-2 times a year, that would be understandable (though infuriating) but to type up that he's thought of doing things he's actually done is unforgiveable, particularly given the serious nature of his actions. I would definitely take that higher.

[TheCountessofFitzdotterel]

They also said we can take him to a&e if he's trying to self harm and there is always a bed kept available for children with emergency psychiatric issues
He had a bad bedtime last night because he did the 'I don't deserve a bed' thing and tried to sleep on a chair, so I went to bed in his bed to keep an eye on him and he came in eventually!

[TheCountessofFitzdotterel]

So, school rang CAMHS yesterday because they were freaked out by the detail in which ds described his suicide plans (not realistic at all but he had clearly thought it through) and CAMHS told them we should take him to the gp to arrange a full autism assessment. So I have made an appointment - I can't think of any reason NOT to and lots of you have recommended it, but...
Firstly it's not what they said before so why the change? Why does more suicidal = more likely to have asd?
Secondly aibu to have got a distinct whiff of them fobbing us off/ saying it to get us out of their hair? They added that they don't deal with asd-related issues.
Thirdly, suppose he does get diagnosed, what then? How EXACTLY does it help with the wanting to die issue? What is this magic help available only to kids with an asd diagnosis, or magic language I can talk to him in once we have it? I can already (and have) read around the subject for advice and it has been partially helpful but has in no way addressed this core problem. I don't mind whether he is or isn't diagnosed as asd, he's still the same kid, but how will it actually help? Isn't there a risk that everything else gets put on ice while we wait for the diagnosis (which was how it felt waiting for the CAMHS appointment tbh).

[Goldmandra]

I would use this as an opportunity to have a further conversation with them.

Write to the clinical lead expressing concern at the number of inaccuracies and ask for another appointment with a different professional, partly in order to correct the inaccuracies and also because you don't feel confident in the judgements made the original practitioner.

[AYearofMinorMiracles]

DS2 was suicidal and self-harming just before his tenth birthday. CAMHS turned him away after an initial meeting because he is atypically autistic and at that time in our area, they did not offer anything for children on the spectrum despite the co-occurrence between mental health issues and ASD being huge.

I returned to the Consultant Psychiatrist who had diagnosed DS2 and he recommended drugs in the short-term - if the anxiety was overwhelming everything else and making life impossible - and long-term, adapted CBT. We (I go too) have been using CBT for over a year now and it has been life-changing. So much so, it was written into his statement this year and he will now have it at school, too.

[nomorelostweekends]

Can I ask what profession he was assessed by at CAMHS? I think it may be helpful to have a full assessment completed by a Clinical Psychologist. As others have said, most will screen for neurodevelopmental difficulties (inc ASD and also OCD) but in addition they will complete a formulation. This means trying to piece together, with you and him, an understanding of why he is having the difficulties he is, bearing in mind the problems that started it may be different to what keeps it going. This then should lead to a plan about how best to support him. There isn't a great amount of research supporting direct therapy/counselling at this age, and most clinical psychologists would want to work with you as a family. But the formulation may suggest some direct work would be helpful. You can usually commission Clinical Psychologists privately, but its not a cheap option I'm afraid. I would go back to his GP first and ask for this specific referral, and a 2nd opinion if it was a psychologist he saw first time.

[OTheHugeManatee]

As an aside, It's not a well-known fact that most NHS mental health services - at least when it comes to counsellors - are in fact staffed by unpaid trainee therapists seeking clinical experience. While of course most are committed and have received good training they may be inexperienced and services are often under-staffed at management level. Keep pushing, get the errors corrected and really consider find someone private to help your poor child if you can afford it.

[Almahart]

Write and correct it or they will be replicated on other reports further down the line. BTW, in the interest of balance, we have had fantastic care from CAMHS, it is as an EP who dismissed our concerns early on

[howtorebuild]

Yes it will come back to haunt you otherwise in future combined with the next batch of mistakes. The picture they will build up will look sinister if you are not careful.

[ChaiseLounger]

The mistakes in files on ds across the last 6 years are horrific.
But with Camhs, I corrected them. I would ring/e- mail/letter with a few bullet-pointed notes of the actual inaccuracies, straight away.
But that's just me!

[TheCountessofFitzdotterel]

Should I write to them to correct it? It's mostly background stuff that nevertheless builds up into a misleading picture, like they've said we're in contact with grandmother 2 or 3 times a year when the reality is we see her 3 or 4 times and talk on the phone twice a week. And they've said he's only made one friend at the new school when actually he has a new best friend plus lots of others. And they've totally made up separation anxiety as a baby.

[howtorebuild]

The errors in reports are not uncommon, they are a dangerous organisation.

[Anotheronesoon]

I haven't read all the responses but wanted to wish you strength - sounds like you are going through an incredibly hard time as a family. I work in the nhs in London and know that we would definately help your son - the cahms or our brilliant psychotherapy or psychology team. I wonder if it's worth going to the biggest hospital or paeds hospital next time he has an episode? Things will get dealt with much faster if you present in a and e. Good luck x