Confused

[Guest Bushbaby]

Hi! I hope you don't mind, but I just need to share my confusion.

After 13.5 years of going to CAMHS with my now 16 year old daughter, today we received the ultimate and final confirmation after years of tests and treatment, that my daughter has Asperger Syndrome and the extreme OCD is part of her Aspergers not separate. Note this condition was not even picked up while she was in hospital for 6 months with her OCD issues.

The diagnosis was expected, but they we got a surprise. CAMHS told us 'goodbye'. They are closing my daughter's case. She is still on medication and no discussion of reviews. We have had no help or suggestions of how to deal with her Aspergers. It's a case of, you have a diagnosis, not our problem, get on with it! Told any problems just go on the Austism Society's website.

Is this normal? I am bewildered!

[Mel1971]

hello i know this all too well - i had this myself, although luckily lorna is in a great place and its just the autism traits that cause any problems now - apart from the odd ocd day now and then.

Its because paeditiricans deal with autism, not camhs - i know its stupid! We had to get an appt with a paeditirician to get the official diagnosis of high functioning autism and then basically nothing has happened since - its something lorna has to live with but as i said the ocd isnt present everyday or causing upset.

I would ask for a review with camhs and seek a meeting and say you feel like youve been left high and dry - she will need to see a psychiatrist about her meds needs and a gp probably wont deal with it if given by camhs - and do push, you know what its like we have to push and push for everything and still it doesnt seem to get better. Your lovely girl has been let down by these people and they need to help her and not just walk away

I do feel for you hon, and please keep us posted, if you need to chat or whinge about the effect of the aspergers dont hesitate to get in touch with me

take care xxxx

Edited April 10, 2013 by Mel1971

[Guest Bushbaby]

Thanks for that, Mel.

I have looked at the NICE guidelines and they can't walk away, especially as the CAMHS psychiatrist prescribes her meds. I did challenge this and they said they forgot she was on meds! Really?

Hannah got her diagnosis from a different psychiatrist and a clinical psychologist at CAMHS. No paediatric involvement at all. I hope that doesn't mean we haven't quite made it official. I did ask them to confirm that it is officially diagnosed now, as they said it had to go to an Autism Forum, but there was no mention of this yesterday. They just said it was official now. Apparently I have to wait about 2 months for it to be put into writing.

The whole process has been bizarre to say the least and I agree that Hannah has been let down from start to finish. Hannah is doing well now, so I can't really complain, but that is down to her amazing fighting spirit. We have coped this far with Aspergers, but it is challenging. I doubt the diagnosis will make any difference to her life. It is strange that I told them that I suspected she was Aspergers and had OCD as far back as 3. Why has it taken so long for me to be proved right? She is about to finish her second school with no help and support, when she would have been given 100% more than she has been given at school. I find that frustrating, but at least Sixth Form and beyond will have systems in place to help her...or am I being optimistic?

We shouldn't have to fight every step of the way, should we?

I am glad to hear Lorna is doing well, but we never speak too soon in this game, do we?

Thanks for your support, Mel. Much appreciated.

Julie xx

[Mel1971]

hi julie

no we dont - i was thinking i didnt put 'for now' after what i said about Lornas ocd!

Aspergers is challenging and looking back i can see quite plainly (hindsight!!!) that she had autistic tendencies even as a toddler and now shes 13!

You and Hannah have never let anyones indifference or ignorance stand in your way which is a credit to you, you Julie have always fought for what you know is best for her and youve been proved right. CAMHS have a duty of care and they need to get on and do their job!

As for the future, i do hope that sixth form is better, i have found a really good contact at school, her years deputy head who is fabulous, i email her and she does her best to sort any problem out.

As for the paediatric side of things that could be the way things are dealt with here, the psych basically told me she had hfa, she said she needed her to see the paediatrician to confirm, which he did but no treatment or therapy.

take care xxx

Edited April 10, 2013 by Mel1971

[Guest BlueBird007]

Hi julie, no this is absolutely wrong. They cannot close the door on your daughter. We got the aspergers diagnosis during my daughters 7 month inpatient spell at 16 two years ago whilst under CAMHS and have since moved into the CMHT service, which despite my concern has been very positive. OCD is comorbid with aspergers, most autisic sufferers will have OCD in some form however not all severe as in our daughters cases. They are totally seperate conditions. Aspergers is a disability that a sufferer is born with that causes massive anxiety and OCD as you know is a mental health anxiety disorder. We were told by the hospital pyschologist that together they are a recipe for a nightmare as the OCD is much more engrained and CBT needs a slightly different approach. She could seperate the difference in my daughters anxiety and reactions to the two different conditions. We were relieved to finally have a diagnosis for which we thought there would be help and support, not dreaming that there was none. At our community CPA review shortly after her discharge from hospital, my ex husband asked who the aspergers expert was present, just to be told that there was none, none existed, CAMHS used to provide a day advice course however this was no longer the case. CAMHS never closed the door on us, however when we moved area just after my daughters 17th and she suffered a severe relapse with her OCD, the new community team did desperately try to pass the buck to social services who were having none of it, and even envolved the police to put pressure on ss, however they again all insisted that her needs were medical. We were fortuneate to find a service that provided support near us with disabilities, mainly autism which even the nuero psychiatrist that diagnosed my daughter claimed was unique. I will pm you about it, even though it may not be in your area, they may be able to offer some advice. I have also just started talking to a solicitor regarding the battle for support and let downs by various agencies, mainly private education, which could be interesting.

take care x

[Guest Bushbaby]

Thank you so much, Blue Bird.

You are so right that the combination of AS and OCD is challenging to say the least. We have also had the threat of social services, but I talked them out of coming round and laid the issue back at CAMHS' door. SS agreed that there isn't much they can do about a medical issue. I had to be very calm on the phone and just spell out that CAMHS need to work with us to sort this out, but it was a horrible situation to be in. CAMHS always tell me to phone the Police about my daughter's aggression. It's part of her condition. She can't help it and I'm just not going there. It's not helpful at all. If I felt danger I would ring, but I often feel CAMHS are covering their own backs half the time.

You sound like you have had a nightmare of a time, but here we have yet again another mum having to fight every step of the way. It is so very frustrating. I hope you can get some redress.

Much appreciated. xx

[Mel1971]

i got told the same Julie about the aggression but there is no way my then 10 year old child was going to be terrified by police just because she was so frustrated and upset that she stopped internalising and let it out - yes its horrible but i would rather she let it out than keep it all in and hurt herself instead - which is what she tried to do because she didnt want to upset me until i found what she was doing and stopped her.

The problem is and its not nice to acknowledge but i really believe this - CAMHS have no idea how to effectively treat/support/advise (or even be consistent with) children/young adults with ocd. I have yet to speak to a parent who has not had a rocky road trying to get help and has smoothly gone through it with no blips or mess ups by CAMHS - i probably will be unpopular saying this and i was very lucky we had the right two therapists - after months of faffing around and an appt from hell with a mental health nurse who had absolutley no idea what ocd was and thought i was odd for wanting to 'label' my child as having a mental condition!!!! No its called acceptance - i wont hide the truth from my child or make her feel isolated by not acknowledging the issues ahead........grr sorry lol once i get started..... as i said we were lucky but thousands of others are not

*comes down from soapbox* take care xxx

[Guest Bushbaby]

I totally agree with you about CAMHS, Mel. They actually asked me what I thought Hannah's problem was and I told them I thought she had high functioning autism and OCD. They spend years in denial. They asked me again and I repeated my theory and hey-ho I was right! Thirteen years to come full circle.

I don't know how you cope with the aggression though, Mel. I find it a nightmare. I also find it bewildering that my husband and I put up with seriously bad language (that she doesn't hear at home) because 'it's only words' and she can't see the fuss. We also put up with violence, if that is how the mood takes her. We put up with it because she just doesn't get it and we can't prevent it. Tolerance because we understand she is poorly.

I actually cannot get through to CAMHS what a life consuming illness this is. They see you every six weeks and you have been through hell and back and they have nothing to offer to help out. We have gone from make a pizza as a family through to call the Police. Maybe there are no answers and I'm expecting too much! This is the reason they don't want to see us again because they accept they can't help anymore. I feel completely abandoned with a young adult who still has quite severe difficulties at times. She has gone for 5 days without taking her meds so we are waiting for nuclear fallout. No good just before her GCSEs. If we can't share the distress we experience with CAMHS, we really will struggle. This worries me greatly.

You sound as sick of battling as I am, Mel, but what choice do we have?

Julie xx

[Guest BlueBird007]

Hi, yes CAMHS Can Always Make Hopeless Suggestions???? like you both Julie and Mel I vowed I would never call the police to my severely unwell child who was having aggressive outbursts when she was so overwhelmed with anxiety that in those few moments she lost control, hurting herself, me and damaging things. CAMHS crisis insisted in these instances that we called the police, I refused point blank until one day the crisis worker that I was talking to after an incident, told me that there had to be a consequence, they weren't saying that the outbursts were not sparked by a serious health issue however there was nothing that they could do to help and in order to protect us all and move forward there needed to be a consequence that was carried out. I think out of desperation and really feeling that one of us would end up seriously hurt I made the call making her health situation very clear, that I was not happy to have needed to call them for what I believed to be a health matter, but I also knew I was in a very volatile situation that I had no control over and was trying to protect us all. The police were aqtually amazing, and very supportive. They were very respectful of the health situation and assured us they were there to help. Following this CAMHS linked us with our own neighbourhood pc and pcso, I think with the idea that they would put pressure on social services who had closed the book on us, maintaining our issues were mental health based! (oh what a surprise) Over the following months the police were regular visitors at our home, clearly seeing for themselves that this was a matter for CAMHS, feeling very strongly that she needed a hospital admission, having several heated telephone conversations with CAMHS regarding this. They were distressed at how we had been left to cope when they could see my daughter was desperate for help and when we were turned away from the local mental health hospital that they suggested we present ourselves at, they took us to A&E knowing they would have to take responsibility for us. It did not get her the re admission that we believed she needed but it did get the crisis team back on board with more structured support. Should anyone have to go through this with an unwell child? Of course not, I guess battle for us all is an understatement, it is disgusting that we should have to fight like this or be placed in these positions with our kids. Just as we have started to come out the other side now that my daughter has moved onto CMHT her physical health has taken an absolute battering, which our gp said would happen when things began to calm as our adrenaline was keeping us going, and her mood has now gone very low and her anxiety back into overdrive. She is now once again practically housebound feeling light headed as soon as she moves too far, it is all such a vicious circle. She had an ecg yesterday, and is awaiting a referal from ENT with a chronic ear infection. Never a dull moment!!!

[Guest Bushbaby]

Sounds like a nightmare, Blue Bird! I really do feel for you. It is relentless what parents go through and nobody (apart from parents here) actually know what we live through daily.

I do worry about post 18 care and how Hannah will cope. I can't ever see her being independent enough to leave home and care for herself. Once her GCSEs are over, I think things will be difficult actually. Lots of time on her hands over the summer and she is refusing to get a part time job or even do some voluntary work. It would be a challenge anyway after our work experience fiasco. She can't even take her dishes away after a meal or even make herself a slice of toast and she would never be able to remember to take her meds, which is a cause of conflict in our house at the moment. Sounds like spoilt brat syndrome, but I can't get her to see the logic of why she should do these things because I would be doing them anyway, so technically she she doesn't need to. Even when I ask her to be helpful, she can't see the need to be. That's the logic of Aspergers, I suppose.

I have just had an apology today, however, for the punch in the head that made my ear bleed last Sunday. She wasn't bothered about my ear, but hoped my earring wasn't damaged. I cannot begin to fathom that mind set! So a bit of progress for the wrong reasons, but every little helps!

Teenagers, exams, Prom stress, OCD and Aspergers are not a good combination for us at the moment.

Blue Bird, you are right when you say that it's adrenaline that keeps you going. We have no choice but to keep going. It's hard work though and there is no end to the cycle. I hope your daughter gets sorted with her other issues too. It's not easy for you, I know!

Edited April 20, 2013 by Bushbaby

[Mel1971]

you know julie its amazing how much we have in common with our girls, my daughter has difficulty comprehending the need to do this or that, sometimes i have to remind her to drink, i guess i didnt realise how much it has been impacting until i read it in your post - it became the 'norm' - ocd is not on the agenda its the HFA side to it that i feel is leading this and unfortunately it will be there always. i also worryso much about her going into adulthood as she is quite vunerable and can be taken advantage of (shes extremely clever but naive in social situations) as has happened in the past.

Bluebird, what a terrible time youve had to go through, i really hope that things get better now shes under the cmht and i do hope her physical health gets better verysoon

take care xx

[Guest Bushbaby]

This is just like my life, Mel!

Strange that we are all having the same experience with our girls yet CAMHS cannot help us. I will never understand that. I just wonder how many other parents are going through this and not being supported. I bet it's a large number. Somebody must have a solution somewhere.

I also agree with the clever but naive comment too. That is my daughter without a doubt. It is also hard to reason with a young person who just 'doesn't get it'! No matter how you spell it out. She left her ipod on the dashboard of the car when we visited a local city that has a reputation for theft. I had told her to take it off the dashboard as she would forget it and the car would be broken into and I wouldn't be too happy. She didn't. We were very lucky to return to the car to find the windscreen still intact and the ipod there too. Hannah said to me that if they were going to the bother of breaking into the car they would pinch the car rather than the ipod, so I needn't have worried! Logical but naive.

My worries are greater than windscreens and ipods, if only she understood.

At least we get it!

Take care. x

[Guest BlueBird007]

oh yes, clever but naive! My daughter is described by most as without doubt the most mature teenager they have ever met, she has outstanding insight and an amazing and accurate take on her conditions, however her naivity and aptness to take things extremely personally causes her enormous difficulties. Becoming the norm also strikes such a chord. My daughter read all through this topic, and was just blown away at how much we all have in common, she said it could have been me speaking about her. She found such comfort in knowing she is not alone with this, and everything she is going through is of course normal for a young woman with aspergers! In fact she thinks the three of us should start up our own support group for girls affected by aspergers/HFA along with comorbid OCD lol! We were advised by the neuro psychiatrist that dianosed my daughter that aspergers is a disability from birth, therefore the underlying issue, however every autistic person will have traits of OCD as they are so intertwinned, although not every autistic person will suffer with OCD severely as our girls do. Interestingly, it was also felt that due to not being diagnosed at a young age which meant none of the support needed during school years, that the OCD had totally taken over and ended in a form of total breakdown. As you have probably found, there is a lot of support for young people severely affected by autism, but very very little for people in our situation, particularly with girls whose profiles are quite different from boys as girls generally tend to be more social, so not as apparent, hence the late diagnosis. Aspergers sufferers have an amazing tendancy to make their side of an arguement seem logical to the point where you will question yourself even if you know you are right. The aggression is very typical of girls in our situation, and the advice I have been given is to always steer around anything that is likely to provoke a meltdown, whatever anyone else thinks ( unhelpful family thinking you are giving into spoilt brat syndrome) they are not the ones living full time with it, and preparing our girls for independent lives, do anything to steer around. Also with aspergers/HFA it doesn't usually work to wait until things have calmed down to discuss the matter as would usually be suggested as it triggers our girls right back to the event or incident and the consequence can be another meltdown. Usual everyday things do not always come naturally, having a drink Mel is very typical, the kids need constant prompts. I often will see my daughter red faced and sweating and prompt her with do you want to take off your coat, scarf and hat? The other day we were out for something to eat with my sister and she sat with her hoodie, bag and things on her lap when my sister notice and chuckled embarissing her, whilst I discretely suggested she put her things on the back of her chair and assisted her. The other evening she wanted to go to bed and I was watching a film, I told her we would go up in the adverts, and I would put the tv on in my room and watch it from there. Seemed such a simple solution, but of course I was changing the routine, where we would normally go to the kitchen to get the night drinks, go up where she goes off to get ready and then we sit in her room for the drink. Of course had I have said nothing, and gone up and watched the end of the film, it would have been finnished before she was ready for bed and she would have known no different, however what seemed such a simple idea to me caused major alarm and panic within her and we ended the evening with a full blown outburst. Of course what didn't help was when I realised all hell was breaking loose, given the fact I was tired, I started snapping about the whole thing fuelling my daughters anxiety further. Obviously another situation that could have been steered around, but I really think with the correct support we will get there. Moving to CMHT has been very positive. I could say things with CAMHS when we left could not have been worse, but that would be an understatement!! I have all names and info for a major complaint, particularly as they sent reviews and care plans which had been deliberately altered to cover up their mistakes, however all in good time!!! Bushbaby, one thing I thought of, is your daughter still on meds, as they cannot discharge you if this is the case as the GP's are not allowed to take responsibility until CMHT and then it is only on CMHT's advice? CAMHS put the fear of God into my daughter about the change over and how they wouldn't provide an adequate service, however when we went to an amazing consultant at the CMHT and expressed these concerns, she said that this would perhaps be the case where care was handed over to the GP however due to the level of my daughters difficulties, she was entitled to a care co-ordinator, which in turn entitled her to all the services within their service. I have had a totally seperate carers assessment, as I am seen as an individual rather than us all being looped in together, and my daughter is seen regularly by the psychiatrist and is due to be seen by the psychology dept next wk. Our care co-ordinator is fab though and really pushes for the best for my daughter.

xxxx

[Guest Bushbaby]

It is reassuring to know that the adult services are better and that your daughter has a supportive care co-ordinator. Hannah refuses to have anything to do with CAMHS as she feels they have let her down so badly. Can't really blame her, so it will be interesting to see what happens when she goes into adult services.

CAMHS did tell me that HFA and OCD are comorbid and it's not that Hannah has 2 conditions. There must be some way of getting support for young people who have both conditions...the worst of both worlds in my mind. At least we know we have got it for life, but it is no consolation.

ASPIES do get themselves into funny positions though. Trying to make logical sense of an illogical world is quite a challenge and she does tell it as it is, but unfortunately it's not always appropriate to do so. I do call her 'Sheldon' at times, which she finds amusing. You can't often reason with her as she can't see anything except from her own point of view and that is hard to take because you can't learn from your mistakes if you feel you are 100% right...even when you are not!

It's a life challenge, but it's never dull, Blue Bird! xxx

Edited April 22, 2013 by Bushbaby