camhs confusion

[mel]

Can anyone help me. i went for a meeting with camhs on tuesday following up on their school visit. I get the feeling that i am being fobbed off. they said they are going to decide wether to assess DS for learning difficulties or autism. they completely disregarded most of his asd traits and said that if he was autistic he would not have stopped his habit of smelling everything because autistics cant be cured? confused? i am. ok, so he doesnt smell everything any more but he still flaps, wont look at people etc ( i could go on but as you all probably know the list is endless)

They say that his social problems could be down to lack of confidence. i agree with that but i dont understand why they seem to want to ignore his other problems.

they completely fudged an excuse as to his obsessive behaviour and said that he doesnt use the toilet properly because he has a 3 yr olds mentality. same reason why they say he has meltdowns.

 

they only spent half a day at his school and just asked me questions about what he was like at age 4 to 5. i dont think that they should be basing any decision on such little information. do i have any rights with regards to their decision if i think they make the wrong one.

 

anyway, off to deal with the latest obsession now, altogether now..........who lives in a pineapple under the sea.......SPONGEBOB SQUAR.......etc

[Bagpuss]

Oh Mel, sounds as if you are not being heard I've never had any dealing with CAMHS, so have no experience or advice to offer, and hope another member will. BTW, my dd's have both had obsessions which have subsided, including smelling everything. As for SB.....ohhhhhh......I have seen EVERY episode, over and over and over again......

[anita81]

i have never delt with them either.My sons 3 and was diagnosed at 2.he always had autistic traits.woulnt talk,would flap had serious meltdowns,woulnt make eye contact etc.he spoke his first words at 2 1/2.he now speaks fluently.hes made great progress.I know at some point in the future theprofessionalsare going to try to fobb me off too.As far as im concerned he has AS and always will.hes had speech therepy,portage etc which have bought him on leaps and bounds.But as much as therepy helps,it doesnt knock out the fact that they are STILL AUTISTIC.Whatever they decide to do,if you dont like it fight against it.MAKE them listen to your point.Get second opinions.third opinions if you have to.you dont have to aggree with what they say.dont take it lying down.

[mel_jayne]

Hi Mel, sorry this post is a few days later just decided to stop feeling sorry for my self after a few mad months.I a currently under CAMHS with kyle 10 just got dx for asperger.I no it's a hard and tough proccess and i understand how you are feeling.i don't no weather you have been told to keep a diary of everything that happen's,it does help.We were referred to camhs for family therapy to handle Kyle behaviour, ,i was adviced to keep phoning when thing's were bad.Finally they admitted he was in the spectrum.

 

I don't no if this helps but keep at them,you no when something's not right,your his mum.Keep on at them and you will get there.It is hard but i found the forum gave me the strenth to keep fighting,and now we have full dx.Just hang on in there.

[Karen A]

Hi I sympathise.We are in a slightly different situation.Some professionals consider Ben to have Asperger-to some extent.Others think he has emotional difficulties.It is very frustrating living in limbo and feeling stuck between professionals.If you are not happy with Camhs you could ask for a refferal for a second opinion with another consultant.Karen

[mum22boys]

Hi,

 

Just wondering, are your CAMHS going to assess or refer him on to another department? I ask because in our area they don't assess or diagnose but they do meet up and gather info from us and observe him to see what they think. I had a battle on my hands with CAMHS because they said he was showing signs of AS BUT he gave her eye contact!!! I phoned and hassled her for 3 months telling her what he was doing, the obsessions, not coping with change of routine etc until she agreed to put his case to the multidisiplinary team. It was them that decided to put him on the list for the CDAC.

YOU know best. Write to CAMHS outlining all the things you are concerned with and send a diary. Do not let them fob you off.

 

By the way, can you tell i'm no fan of CAMHS!

 

mum22boys

[mel]

Spoke to them again yesterday. they are refer him to Ed Psych for his learning difficulties and they are also refering him to their social communications group to assess for Asd. i eat my words. it sounds like they did listen to me after all lol

 

slinking away rather sheepishly..............

[Karen A]

Hi sounds like good news.I hope the social communication group are helpful.Karen

[JsMum]

Spoke to them again yesterday. they are refer him to Ed Psych for his learning difficulties and they are also refering him to their social communications group to assess for Asd. i eat my words. it sounds like they did listen to me after all lol

 

slinking away rather sheepishly..............

 

When J was your sons age J had been assessed by an ed psych and he was given number of assessments looking at various abilities, J scored high in all tasks that had visual clues, and similair tasks but failed on all tasks that needed sustained attention and concentration and he took a long time, and on some tasks he gave up all together.

 

It was felt then that he had learning difficulties.

 

The ed psych said that most of Js problems with children and adults was frustration and inability to communicate and resulted in pshiscally getting thier attention, pulling their clothes, dragging them off or repeatedly tapping on their backs, he was very close contact to other children, and sometimes J hit out at children even sometimes as a way of an introduction to himself.

 

Other times he couldnt cope with rules of the games and often had fights, somtimes in retaliation others when he couldnt cope.

 

J was given speech and language therapy for 4 years as he could not put together sentences and his pernounciations where not making the correct sounds.

 

J continued at school with a school action plus and everyone in the education system kept on putting all his symptoms on to bad behaviour.

 

It was very frustrating, because they punished him for things he couldnt help and so he became very volertile at home and I had a real hard time at home with him, the only person listening was his GP and I listened to my gutt feeling that something wasnt right.

 

The GP referred him to the CAMHS and he was assessed in the units classroom and straight away his symptoms of ADHD was picked up, along with Dyslexia and an expressive disorder, his main behaviour issue was his oppositional and so he also got diagnosed as ODD.

 

J had a difficult time in camhs and somethings happened that I wouldnt let happen ever again, J has issues with food ( autistic traits) and they was very insistant he ate certain foods and I believe his eating habits have got worse since then.

 

Camhs also put a lot of stress on me, the unit had support of a team and could manage him but on an evening on my own I was helpless left to cope with disruptive behaviour.

 

He was discharged even though they know he had traits of Autism they didnt diagnose it, since then I have been seeing a peadatrition and he is in agreement that J has Autism with Learning Difficulties, we are awaiting an assessment in a leading assessment centre for Autism.

 

The School he is now, the gp and even himself as he knows he is different to the other children J has Autism and as there is no specialist in our area we are having to go to a different county to be seen.

 

So you see it can be really difficult to get a diagnosis, and some schools dont seem to understand that its a broad spectrum and misdiagnosing children.

 

If you ring NAS they can send you information and a pack with Autism and Learning Difficulties.

 

I am a member now and have a lot of information that now gives me the tools to manage J and to try different ways to get J to cope.

 

Its really good that your son is going into a social group but if they dont understand he has Autism then they could do more harm than good, it needs to specialised with understanding where he is coming from not what they want to teach him to conform.

 

J has done a lot of work around social skills but he still struggles in the playground with communicating and there is other issues to take into account as well because it wont be just social skills that will be a difficulty, but rules of games, understanding kids humour and then there is the sensory stuff as well, so crowds, noise, and the unstructured play.

 

If at anytime you dont feel that someone from camhs is not lizening then jot it down with dates and keep a diary, if at all possible video any behaviours that make you think autism and show them the video.

 

There is also the carers centre who can ensure that you are treated with the respect you deserve and that things are done properly, they are very supportive.

 

Listen to your instincts and go with what your heart tells you.

 

JsMum

[Steel Maiden]

Mel,

 

CAHMS is awful. It has betrayed me in every way. I suffered from depression when I was around fourteen years old, which then slowly progressed to psychosis. I was having hallucinations, and all my therapist said to my Mum was, "oh yes, she has hallucinations". And that was the end. She did not pursue it any further. Next thing I know I'm in hospital.

 

And guess who I was sent back to after I was formally discharged?

 

CAHMS.

 

Life = unfair.

 

If money is not a concern, go private. My friend (a depressive, funnily enough) has a private doctor (her parents aren't particularly well off, but they're managing!) and she tells me that he is very good. I never asked her about the price though.

Edited November 12, 2006 by Steel Maiden