Diagnosis / Camhs

Go back to the previous page (General Autism)

Posted by
justamum

on 15th February 2010

at 16:13

It may be useful for you to
read my previous posts there are only a couple, under swings and

roundabouts it will put you in the picture.
My question is, how can I ensure that this time CAMHS are neutral and
fair in their assessment of my son, as last time they had quite a flawed
view of myself which I believe greatly influenced the outcome of my
sons assessment. (They thought I was fabricating my sons difficulties)
and they would not be challenged regarding this...

Though this time I have additional evidence from several sources re:
Educational Psychologist, Speech Therapist, additional evidence of
familial and historic aspergers , macrocephaly and a history of developmental
delay that was never included in my sons medical notes last time.
My worry is that they may feel (because of 2 previous CAMHS no diagnosis and
the trouble we went through re: care proceedings, that they had better
still not give him a diagnosis as this will make them look bad.
Im not interested in the previous rights and wrongs , I simply require
that my son gets the support he has deserved all these years....He is now
14 and has struggled so much through school. Anything I can do, Im
just dreading it...

Thank you

Paula

Posted by
bumblebee

on 15th February 2010

at 19:15

Hi Paula,

I am mum to 3 children with ASD/Aspergers aged 4, 11 and 14. I had a horrible expierience with CAMHS too when they removed my eldest daughters diagnosis and similarly, thought I was the problem.....I dont think Psychiatrists are used to parents who understand their children so deeply and instinctively know how to help them....in other words, for whatever reasons they feel they are being told how to do their jobs!!

The way we resolved this was our local CAMHS referred her to the experts at the Maudsley Hospital in London. There are many places like this around the country but no where near enough!! The other option is to ask your GP to refer you either privately or via the NHS to a Paediatrician. You will need the GP to write that the referral is due to suspected autism and include the reports from the professionals. Autism/Aspergers diagnosis' are medical diagnosis and although there are some experts out there working in CAMHS, unless they are trained to carry out a well recognised formal assessment (like ADOS, ADI, DISCO) (in my opinion and after my expieriences) shouldnt be doing the assessment! Not sure that would go down too well with them though! But you do have the option of the Paediatrician referral......Just make sure it says something about autism on the referral letter, otherwise you will get sent back to CAMHS!!

To be honest, with the support of the other professionals reports, there may well be enough evidence now for CAMHS to diagnose your son and it could be fine this time, but I know how worrying and frustrating it is to be left in limbo waiting for someone to recognise the struggles in your child that you see daily......Would it help while you are waiting to chat over some of the issues you are having with your son now while you wait for the assessment and see if there is any advice I or any of the other members could help with?

Take care and stay strong :0)

Claire - Community Champion

Posted by
justamum

on 15th February 2010

at 21:50

Hi Claire,

Thanks so much for replying :)

Just want to clarify that, due to other professionals stepping in at court and going above and beyond the call of duty in supporting my opinion that my son has Aspergers Sydrome (for starters) the unhelpful label of FII was not carried through or acted upon. (The professionals that got involved was a well known female author, broadcaster and international lecturer on Aspergers syndrome. The other being the worlds authority on Aspergers Syndrome) Even though my case is now closed I cannot reveal their identities as I am still under the disclosure rules....If you have a inkling who I am talking about then perhaps you will be as suprised as I was when the judge favoured the court expert (former CAMHS) that had no specialism in ASD s and didnt know who the Worlds Authority on Aspergers syndrome was when asked.

Anyway the court sent my son to a school especially for children with Aspergers Syndrome and Speech and Language/Communication Difficulties. They have the resources with which to diagnose a pupil if they feel it is applicable but from the start made it very clear that they were not interested in diagnosing him.

My son also has a paediatrician and they state they cannot get involved with diagnosis, they just look after health in general. They have recently prescribed him melatonin.

My son could also be diagnosed by his present Educational Psychologist, but the man skirts around the issue of Dx as if a hot potato...and the latest attempt to passify me was to say my son has NLD non-verbal learning disorder. A child can only have NLD if he doesnt have repetitive and rigid thinking. Ed Psyche admits himself he has.....so why no Dx unless he is trying to avoid a battle with CAMHS.

This EP has suggested my son may change schools if he is unhappy, to a more mainstream one, as it has an ASD unit there....Is it me ? Or are they kinda treating him as though he has a diagnosis ? ASD unit ? He is also the person that has suggested CAMHS....perhaps he is throwing the potato back to them......Sorry for going on and on, get dizzy with it all... Feel like Im re-entering the lions mouth going back to Camhs, dont I have to go with this as diagnosis are not taken seriously unless they are done by a multidisciplinary team within your own local authority. Can someone clarify this for me please ?

Thanks,

paula

Posted by
bumblebee

on 16th February 2010

at 10:08

Hi Paula,

OH! I get it now!! It does seem strange that you have all of that expert support and the court still listen to CAMHS....like you say, the judge obviously didnt know who they were! I have a good idea who you mean, but regardless of this it seems like there has already been a huge emphasis on your sons diagnosis with the court case, I'd imagine that any professional would be terrified of getting involved in trying to change the courts decision.....I think you are spot on there.....Can I ask if you feel his needs are being met without the diagnosis? It does sound like they are treating him as if he has autism....I was just curious as to why his diagnosis was decided within a court? Was it part of another court case? Also, how long ago was the court case? did your legal support discuss appealing? Sorry for the barrage of questions!! You probably had enough of that in court!!

Claire - Community Champion

Posted by
Elena Goodrum

on 16th February 2010

at 11:08

Hi Paula, I'm glad you came and posted this - and already some great responses! : )

Posted by
justamum

on 16th February 2010

at 12:57

Spot on Claire :) Thanks Elena...

The case ended April 2008 and as I said because it was dealt with within the family courts, I am restricted as to what information I can divulge. For example, when my son started the new school I was instructed by the courts that the school could view the Expert Witnesses report (which was full of exaggerations and blatent lies) but I could not share the report on my son done by the highly regarded Aspergers experts that had helped me.

The Expert witness (Camhs) didnt know who the World Authority on Aspergers Syndrome was....as I discovered this Expert hadnt a specialism in Asd s and was definately acting outside his area of expertise.

My sons diagnosis was taken away half way through the care proceedings, even though it was a diagnosis and was fully backed by a superb independant Ed Psyche, the report said, "pending a SALT report to confirm.

The court then blocked the SALT assessment, stating that because "I was fabricating his difficulties" I wasnt allowed to put him through any assessments as this was classed as child abuse.

At the same time that care proceedings were ongoing, I was appealing against the LEA as they were refusing to assess my son for SEN, because of this the judge decided to merge the SEN appeal file with the care proceedings file so he could deal with both issues. Needless to say I wasnt happy, as I knew that anything could happen from there on in and I wouldnt be able to share it publically with anyone.

For the last few months of the care proceedings I became self litigent running my own case, as I discovered my solicitor was not acting with the best interests of my son and my family in mind. I sacked him and also sacked my nightmare of a barrister for with holding vital evidence from the courts and bullying me horrendously, to sign the threshold of abuse document. (Which basically is an admittance of guilt, that the parent has abused their child) I wouldnt sign it as I hadnt abused my child. He spent a full day wearing me down, he was nasty, reducing me to tears.....I digress sorry.

Ermm...At the latter end of the final hearing, I declared my intention to the courts that I would like to appeal against the decision the judge had made re: Expert Witnesses statements. At that point the judge lost his temper, he insisted I was to take time to reconsider, then the barrister for the local authority stated if I was to go down that route, they would have to re-open my sons case with 'new concerns' regarding his welfare. I had to back down, it was a blatent threat right in front of the judge and the judge didnt bat an eyelid.

My sons basic needs are being met, he did well when he first started there in 2008, he uses an alphasmart in lessons. He hates most lessons, his attitude to school is very negative, it has always been that way,he is usually very passive in school, (can be agressive and more verbal at home,) polite, wont tell staff if something is bothering him. Saves it up for major unloading when he gets home. He really struggles to find any subject he actually likes, says they are all boring. His favourite phrase is 'Im Bored', he must tell me 100+ times a day. He wont go swimming, play football, go to the gym, avoids them. School said he is dyspraxic. He has to wear dark tinted glasses as he is photophobic. Has just ended a 7 yr obsession with yugioh cards (there is a god) it has been replaced by music 24/7 by TV or via his earphones....School have ongoingly struggled to find anything he enjoys. I have suggested they do music lessons or instruments with him, as he has just got a full size drumkit, but they say they havent got any staff that does music. They tend to cater for the class, where as sometimes I feel my son should be catered for as an individual.He doesnt like staff, doesnt like most of the kids.

Motivation has always been a major issue, I have increasingly struggled over the years to find rewards that will motivate him. Now we are at the point were his attendence is down to about 50%, what I say or do to get him into school is no longer effective. He really doesnt give a crap. School agree with me that he is depressed. So now we have CAMHS to attend, I think if they try to deal with his depression without dealing with his diagnosis I shall scream my head off.... lol

Paula

Posted by
bumblebee

on 17th February 2010

at 08:36

I dont blame you!!!

I dont think medication works without therapeutical input to be honest....it seemed like a bit of a cop out to me when they medicated my daughter.... Anyway, I dont know what to suggest....it seems like you know your stuff and your son very well.....feel free to keep asking question and to rant away as much as you like if you need to!!

Claire - Community Champion