Here some suggested organisations that offer expert advice on SN.
Sooo disappointed with CAMHS...(14 Posts)
I need a rant....exhausted of the whole thing now, want to be back to normal but know that will never happen.
Went with DS today for first appointment with camhs to ask if they would diagnose him with what I think he has - PDA and she just said that it is not something that can be diagnosed it is a term used for behaviour. I was so upset but kept me cool, then she went down the whole ADHD and drugs route and I somehow left with Connors forms to fill in!!!
I know he has PDA and I need another brick wall to bang my poor head against. My DS has aspergers and I am fully aware that aspergers has to be treated differently to PDA so I am in a nightmare at the moment with so many unanswered questions. I left the appointment and as I am the only fighter for my son I thought bugger it I am not taking a no for this one and read up immediately on my paperwork printed from the NAS website and sure as he there was plenty of mentions of the need to diagnose for PDA, how bloody confused am i!!!!! What do I do next!
If there is anyone reading this please give some advise if you have it on diagnosis for this and if your child has had one or for ODD as this I was told today is also undiagnosable.
Sick of the ASD's as everyone is quick to diagnose but from there there just seems to be a black whole for the person who has it and all of the family!!
Not a fan of CAMHS either but you said it was your first appointment today. If so there's a few things you need to consider:
You will be highly unlikey to receive any formal diagnosis (dx) at your first visit. Getting a dx can take literally months and involve a whole host of people that may even include input as to his behaviour from school staff
CAMHS won't take kindly to the parent suggesting a dx - they consider that to be their job and we are just thick parents who surf the medical sites on the internet
You've picked a very contentious diagnosis for him that some professionals still refuse to believe exists. As far as I remember PDA is not included in the DSM IV which is the 'handbook' of all accepted conditions. PDA is a relatively new 'condotion' which until recently was rarely diagnosed outside of Nottingham and at Elizabeth Newsom;s clinic. Even now there's debate as to if / where Aspergers and PDA overlap. So it may be that in your particular neck of the woods PDA is still not recognised or diagnosed - hence your being told that PDA is a behaviour rather than a dx.
You need to give CAMHS time to explore all the possible dxs that could explain your son's behaviour. That will take time. Making a differential dx for what could be behaviour caused by many overlapping, comorbid conditions is not easy.
If you're totally convinced it's PDA then take him to Nottingham and book a private assessment with Dr Newsom's team.
Personally, I wouldn't.
You are asking for a diagnosis of CAMHS on a first appointment and upset that they haven't?
They have to do observations, explore other options and liase with school/other professionals before they can diagnose.
Give them some time and a chance. I understand that homelife maybe difficult but a diagnosis won't change that.
Thanks for all your info wetaugust. Why do you say it wouldnt be worth taking him to Nottingham? (even though it is a bloody long way!), at the moment I just want to do something anything to help my son. I will fight till he gets what he needs..
All I could see from CAMHS was a desperation to get a connors form filled in, she has already mentioned the drugs! it seems like a quick fix to me, out the door then you are another drugged up little person, trying to cope like a zombie...basically nobody knows about PDA properly. apart from the Americans it seems. It is very frustrating for me as I need to know as I have no idea how to help him, he is becoming very hard to cope with and I am feeling very desperate. It is so hard to cope and on tope of that I have a very busy hard work two year old boy aswell!
I will people wouldnt make all these conditions up if they can't follow through it's bollocks!! sorry fed up today...
thanks for your help...
I wasn't after a diagnosis on the first appointment at all I wanted a possible follow up appoinment or many! but at the first hurdle she mentioned that PDA and ODD don't exist!!! and they are just titles for types of behaviour, so everything that I have been reading up on and constantly been researching on a weekly basis and which I believed to be the most accurate descipriton for my DS was thrown out of the water, it was incredibly upsetting....
basically she said she couldnt help as there was nothing to help with! and then forced connors on me which I really didn't want!
I am fed up
I hear your frustration and understandable disapointment!! ( Yes been there too it is hard not to have expectations of a long awaited appointment!)
1 suppose they have to work in a methological way and follow a set routine so that no one jumps to the wrong conclusion or overlooks significant details.
Did she really say she could not help?? Are you getting further appointments or does she need to score the connors form before deciding on follow up?
I have 3 children (out of 4) with SN Suzza I understand your frustration.
My youngest can be very active and oppositional and also get upset if things don't happen in the way he thinks they should.
I have to try and ignore some of the behaviour because if I reacted to it and responded to it in the same way you would if a NT child acted that way I would be constantly telling him off.
And of course he is oppositional when telling him off so his reaction to anything said to him whatever is is "go on then" while laughing and smiling.
He doesn't have an off switch and sleep is an issue for him too.
I also have a connors form to fill in for him and another appointment for him to follow up this up in a few months this was from an appointment that I waited 6 months for.
I can only advise you to keep a diary of the behaviours, what you think caused them and how you dealt with them as a focus, keep calm and don't challange him on every behaviour, give him time to calm down and come to you to apologise, give yourself time to sit down and have a coffee and give yourself a break when you can.
Magso - yes you are right just so frustrating isn't it, everything!!
Yes she said that with re to PDA - it doesn't exist and I sarcastically said do I self diagnose then and find out what to do via the internet and she said YES LOL, oh lord!!
I have to fill the connors in and then send them back and they will get back to me. I hope he isn't ADHD not keen on the idea of drugging the little man.
wasuup3000 - god you have your hands full. You are amazing!
I try to keep records but it is so hard isn't it, to sit and think and stop all the time. I will do some more ABC chart stuff, you are definitely right..
I agree with ignoring the behaviour but it is so hard when out in public you look like a terrible parent I need to stop worrying about all that, before I go mad. The only time it is hard to ignore is when he gets really violent he keeps treatening to "smash the place up" and starts banging hard on glass doors and windows and unfortunataly he is very strong! I think the best thing for me to do is as you say find the causes and get onto him before it all kicks off. Have you had any dealings with ABA? when I mentioned it to the behaviour support lady she looked blank!! I could have screamed!!
You can't really do anything about what people think - so don't worry about it is how I try to think about it.
I haven't used ABA.
If he is being violent it soesn't really matter what he breaks just stay out of his way so you don't get hurt - you can't get replaced.
It is hard to record things best done after you have had some chill out time when he is in bed!
I am not amazing I just do my best, got a sendist tribunal coming up for one child, these appoinments for another and a statement to appeal for another when I have got this tribunal out of the way, it's dealing with all the admin/appointments on top of what I deal with already that makes it soo much harder!
I know, thanks...
yes that is true speak!
Yes that is a good idea, as just after I have steam coming out of my ears for a while ;)
oh god the appointments I have had to stop working so much due to trying to fit it all in!
Not too sure where you have been researching, but you may like to have a look at these articles
Pathological demand avoidance (PDA) is a syndrome proposed which is not included in the manual of mental disorders DSM-IV nor currently considered to be included in DSM-V which is due in 2012.
And Oppositional defiant disorder which is part of DSM-IV, and ADHD is considered to be one of the related issues.
Dolfrog - Thanks for this. I will take a look when I get a moment.
It is so annoying I am hearing this alot that it is not in the manual of mental disorders but it does exist and to some professionals, recognised and they agree that it should be but others not!. Argh I would imagine in the next few years it will appear...
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