Does services deliberatively not give correct diagnosis

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Just wondering if people feel that the services deliberatively let people go undiagnosed and if so why. I understand the obvious reasons, save money etc.

I had a very hard battle to get my son dx and felt a lot of prejudiced and discrimination. I felt there were very judgemental and my son would not have got his dx if I didn't fight.

I also support my sister who has schizophrenia, she has 2 son's and I help her. Her oldest son 21yrs was very difficult as a child and I feel he fits the criteria for ASD he and my son are very similar in there understanding and there reactions to their frustration. They have other similarities, my nephew has a dx of ADHD ODD CD and now after battling with them they dx him with a personality disorder.

We are trying too claim disability allowance for him but they are saying these dx wont be accepted. To be honest I don't care what label they use but I feel even looking back on his childhood and he also lived with me for 3 years that he does meet the criteria for ASD.

They have refused to assess him for ASD stating he was when he was a teenager, this is the same psychiatrist who told me that my son had no issues. I also said to look at schizophrenia as his mum has this dx and we have a very strong family history of schizophrenia.

Is it that the services really don't have a clue, or is it they have to meet government guidelines or do they think they are God and deicide who they are going to help regardless of the damage to the individual. Its very unjust my nephew has huge difficulties in managing himself daily and there is no way he can work at the moment. We have to support him daily but they are no listening to us.

It's quite common for this to happen unfortunately. I'm in England and it is hell trying to get a diagnosis here. I was referred to the Child and Adolescent Mental Health Service (CAMHS) when I was 14 years old and told that I might have a psychotic disorder (I didn't and still don't) just because my Great Aunty is schizophrenic. My Mum and now step-dad both realised that I was on the spectrum (and quite obviously) when I was 15, but when she suggested this to CAMHS, they brushed her off by saying, 'we don't like to label children'. Firstly, 15 is hardly a 'child' anymore and my school life was suffering because of my mystery conditions. In the end I got bullied so much at school that I had a nervous breakdown (they weren't so reluctant to diagnose THAT!). I was given 'advice' from CAMHS such as 'if you wear prettier clothes you'll feel better' and my Mum was encouraged to buy me trashy celebrity magazines which I hated! The psychiatrist said it would 'make me act more normal'.

Eventually I learnt about my Mum and Step-dad's idea that I was on the spectrum and I agreed with it. I fought for the remaining two years I had with CAMHS to get a diagnosis, but still they wouldn't do it. When I was moved to the adult service aged 17 (which was a miracle because CAMHS finish at 17 and the adult service starts at 18... *sigh*...), they also refused to diagnose me with ASD and instead stuck a 'Personality disorder NOS' label on me. It took two MORE years to get referred to a neuropsychiatrist who diagnosed my Tourettes and severe OCD (seriously how could they have missed BOTH!?) then several more months to be referred to the Maudsley hospital in London where I was finally diagnosed with autism.

So yes, I do feel like the services refuse to diagnose people because everyone who met me could diagnose me in seconds but it took them over 6 years. I think it is to save money because they would have to get me statemented for school which never happened. It's hard, I know but you just have to be REALLY in their face all the time, constantly providing evidence and asking for a referral to a specialist. It might take another 5 years, but if we hadn't fought so hard, it might have never happened!

Oh yeah, and my Mum was accused of having Munchausens-by-proxy at one point too...

It seems more common that people feel frustrated for not getting the diagnosis that they want, and that they go from one diagnostician to another until they obtain the desired diagnosis. Even then, they are never fully satisfied, finding all sorts of "new" symptoms to be diagnosed and treated until their financial resources are exhausted, or the child grows up and seeks help on his own.

Munchausen by Proxy Syndrome (MbPS) is worth considering...

Something similar happened to me. My diagnoses weren't doubted but ignored. A public health officer (not a mental health professional) who was assigned to evaluate my ability to work in regard to my ASD came up with a questionable interpretation. In the end, I was said to have slight attention difficulties that were explained to be called AS and explained to be entirely meaningless.

Fnord, I disagree with you, whilst yes its frustrating but my nephew how is 21yrs feels there is something wrong, he was admitted to hospital and told them that he was bi-polar or schizophrenia but wasn't sure. Needs to know why and what are his difficulties.

Your attitude is not much different from the local services presumptions that are usually unfounded.

Like Jellybean I went through hell to get a diagnosis for my son, I didn't know anything about Aspergers or even heard of it until I took My son to a speech and language therapist she query AS I got the dx private, went back to the local services CAMHS and they ignored it until I kick up so much that now they have dx him and also the ombudsman for children is investigating them. I had suspected my son had ADHD like my nephew who was dx with ADHD because they were so similar. Then my son got the dx Aspergers and I really think it fits with my nephew so I not looking for what I think it should be I am hoping he gets whatever help or support he needs rather than just medications. I am probably hoping for too much.

Jellybean I understand the pain you went through, I am at it for 5 years got there but it certainly helped that the ombudsman is investigating them. But they are still an arrogant bunch.

So you think I'm wrong ... ... best of luck to you, anyway.

When you think someone like that has "professional qualifications" (that obviously didn't mean much in this case) which supposedly mean they are able to help people, it's enough to scare the wits out of you. Anyone who'd offer "advice" like that...

Fnord can be blunt sometimes, but the fact of the matter is: not everyone who wants an ASD diagnosis is going to get one.

Also, not everyone who has trouble working has an ASD (and some people with ASD have no trouble working). My brother who also has ADHD (and maybe even ODD--not sure about that though) has "trouble" working. He would rather stay home, but he is perfectly capable of doing what he does. It just might not be the most thrilling thing to do with one's time.

I don't know what your nephew has, just saying that not all psychologists are out to screw everyone over. Some just genuinely believe the symptoms are better suited to another label or they can see something that a parent cannot or is unwilling to. Some might also do what you suggest, but if you are going to doc after doc after doc and none of them are agreeing, I don't think it is one big conspiracy to screw your nephew. I think maybe if one, two, and three opinions are not seeing ASD, then perhaps ASD is not there.

Besides, it is such a popular diagnosis today that I cannot see ALL doctors deliberately avoiding it just in your case. I was given it easily when I went for it because my symptoms surpassed the autism scores.

My first battle with them was did my son have ADHD, they said no then I took him private, he got the dx, they ignored this, I had 3 dx of ADHD and they said no. That my son had no issues!

I just feel they are reluctant to dx ASD, we asked for my nephew to be re-assessed which I feel he should have the to right to requests this, they have refused. My nephew which I didn't want to go into too much has huge issues with his daily life, communication and language a big problem, didn't speak fully until he was 3 years old. huge social problems, can't handle change monotone voice, lacks eye contact etc. I am not saying that he can't work because of ASD per Se but he has genuine issues. Huge difficulties at school from pre-school and we always felt there was more going on with him than ADHD.

As I said didn't know about ASD until it was queried with my own son. I just feel had a very difficult experiences with them and continue to do so. Like I said the only reason they are paying attention now is because they are been investigated.

I know of another child who's mum is having a very difficult time, now I know a lot about ASD and her son again fits the criteria for AS but are treating him for severe anxieties. Which is correct but she feels it more than that and again they are not listening.

Also Jellybean is from England and I am from Ireland dealing with the same service CAMHS and having the same difficulties. I have heard off so many parents having huge difficulties with this services. Parents getting dx private but cant when they use the services and they also ignore the private dx. Maybe I will do a poll on it.

CAMHS are over loaded and underfunded. They have recently been given deadlines to clear waiting lists in England (I don't know if this is true for elsewhere in the UK) I have it on good authority that only the most severe cases are being taken on.

My youngest has been on the waiting list since he was 4, he is going to be 7 next month and finally has a 1 hour appointment next month where they will decide whether he needs a dx.

As awareness raises so does the demand for diagnosis.

My son was threatening suicide because of school, not sure how there priority works. Here in Ireland prison are full, suicide is the highest amongst young people. I feel a lot of undiagnosed young people and have no way out only suicide. I also feel the same in the prison system even I know there has been many polls but you can't answer polls if you are undiagnosed with whatever mental health or other problems.

I was told by CAMHS because my son looked normal there is nothing wrong.

Good luck with CAMHS, when they can't explain why your child behaves in a certain way they will then start blaming you. So be prepared! I hope you are lucky to met a sincere professional.

Apparently it is a 'postcode lottery' with CAMHS (and I am not shocked or surprised that you (op) mentioned their name!) as some places seem to have a brilliant service and others just don't. I know some people from the midlands (birmingham area) who have had a brilliant experience with CAMHS, but the majority of people in the area where I was seen had a terrible one. Although I can sort of understand what Fnord means, I don't think he truly understands how terrible CAMHS can be because a lot of mothers are diagnosed with Munchausens-by-proxy when all they want is the best for their kid. Once I was diagnosed with Autism, Tourette syndrome and OCD, My Mum stopped fighting with the mental health service and instead to get me the help I needed. If she had truly had MBP, she would have continued to go to the doctor for 'more answers'. I can see how parents might come across this way, but I don't think that the majority are MBP sufferers, but CAMHS don't see it that way at all.

No.

If no, why is it such a struggle to get a diagnosis. I know I am not on my own with this, I have spoke to many parents who had to fight with services.

From my own experience I was told no without my son been assessed fully. I feel like Kiana said only the most severe cases get prioritized. If this is the case then the services are deliberatively failing children/adults because they look normal, behave well at school and manage etc.

I have been accused of causing my son's anxieties, letters ignored even by the complaints office of the service, phone calls not returned etc. I rang on a few occasions as I was concerned about him threatening suicide and received an appointment 2 weeks later. One occasion because I was so worried I had to get my GP to contact them.

Why does this happen, one because my son can mask his difficulties but surely this service should be experience enough to work this out.

It says in your sig that your son is DX with AS, I'm confused. Do you have another son or what?

Sorry, I had to go private, where I live private services are very limited, there is only 1 private child psychiatrist in the country. This is a 260km drive one way, also he gives the dx and then he referred my son to services in our area.

I was hoping after my son got the diagnosis that I would be able to go to the local services where I live. But they ignored this report, I had a long battle and as I said now they are under investigation of how they dealt with my son's case. They final agree on the dx.

Getting the local service to agree is the only way my son would receive support at school, access therapy, S & L, OT, CBT and so forth. We are getting there with this slowly.

My question is because after my 5 years of battling and speaking to parents was wondering how common this is. Its unbelievable the way we were treated and what I am posting is only the tip of the iceberg, when I think about it, I still find it so hard to believe we as a family had to go through this. Curious to see how many families/individuals experience this or not.