Paying Privately for Adult Aspergers Assessment?

Hello, I don't live in England, but i am thinking of travelling to London in a few weeks with my sister (31yo) to seek help for her. She was tested for autism a few years ago, but results came back negative. I, and the rest of her family are not so convinced. Where we live there is very little support and services provided for this or any type of personality disorder. 

What I would like to know is, if we are in London for one week, what would our options be, in particular as non-residents? I would like to have her tested, and don't mind paying for this to be done..though preferably not through the nose! Can anyone recommend anyone or suggest a route to follow? I have been reading on here that a private diagnosis can be a combo of over-priced, sometimes unreliable and unacceptable as an official diagnosis when, for example, applying for benefit. Since the latter is not applicable to my sister as we live outside the UK, and since we don't have the luxury of time, is a private diagnosis not our only option? 

Thank you for your help :)

Your not allowed to make a mistake today unfortunately this makes for a worse system. Since my second opinion referal I have been treated well however it has just accenuated how inept and vexatious certain members of Wrexham CBC and CMHT are. Unfortunately the system is such that those who see malpractise do nothing since they are terrified of being victimised themselves. Recent press reports show this is a cultural and endemic problem in the NHS. It is the same in other sectors of society ie immigration since the 1960's any one saying it is a problem has been condemned as a racist, nazi ect ect by the politically correct police. I could go on and on. Reasonability doesn't exist.

  A vendetta is being run aginst me in part because my exwife worked for Wrexham Social Services. However there was an issue before that. In the late 1980's a psycholigist said my problems were more than anxiety if ASD was better understood then I am in no doubt I would have been diagnosed unfortunately all that was later ignored with every negative aspect of my character highlighted to refuse me any treatment and criminalise me. Now the system is protecting those people. How many other patients are they damaging while drawing a good salary from the tax payer under the pretence of "helping" the public. 

    I am I am very bitter at my treatment but extremely concerned that some very dangerous individuals are being allowed to continue to deal with very vunerable people and concens raised by myself and advocates are being ignored.

mic,

One can not simply judge the whole of the NHS, or the whole of private practice, on one, or even several, isolated case(s).

I was diagnosed through the NHS. And whilst I had to jump through some hoops to get there, once I had, the diagnostic process was excellent. I was seen by a specialist psychologist who was trained in the diagnosis of Asperger's in Adults, and she confirmed, and re-affirmed, her diagnosis with Professor Baron Cohen himself.

One of the biggest failings of the NHS is simply that the delivery of service is not consistent across all regional authorities, largely, I believe, because of the way the local primary care trusts have been given the power to determine what level of services they provide.

However, the same failings can be said to exist within the private health sector, and are probably more likely to exist there because each individual practitioner is entirely independent and decides for themselves the level of service they will provide.

An up date on my situation will be of interest to all posts here. I can see Hopes point however to think the NHS may be more impartial is probably true in some circumstances however in my case they have been everything but, or more precisely my local CMHT have been. I have now had an NHS diagnosis which confirmed the private dignosis by the countries longest established clinic and specialist. A consultant who has worked as an ASD specialist for the NHS too. It cost approx £800.

Later in 2012 I finally managed to get an appointment to see anther community psychiatist for a second opinon. Without seeing this psyciatist he referred me to the LHB ASD specialist (I am in North Wales). After an hour she confirmed the diagnosis and I am now in receipt of proper CMHT services in an adjacent Local Authority area. They are compiling a care and crisis managment plan. This is the first time this has happened,  despite being involved with Wrexham Mental Health Services off and on for 25 years. They continue to refuse to answer any questions regarding the way I have been treated. It took over two and half years to get a second opinion. Why???

They obviously didn't want to do this because they have put me in Prison destroyed my life and marriage labling me as a extreme risk with BPD and OCD essentially a hate campaign.

  I can except mistakes are made by medical professionals, many people can't but to victimise and demonise someone becuse they question their judgement and ask for very basic help is totally uncceptable. Despite the diagnosis I still feel very vunerable from these people and can't access public services in the Wrexham area. They are above the law. There is no justice or equality in this country unless you are a member of a minority victim group or work for the public service etc. Its quite a perverted, frightening system were only certain minority groups matter.    

REPLY TO "HOPE":

I have a private diagnosis, and I *didn't* have to pay for it, because luckily the clinician needed an adult subject.  So there is no question that I 'bought' a diagnosis or that it was not objective.

He did an extremely thorough assessment, including testing me for psychological conditions that might have similar traits, and ruling them out.  My diagnosis was later confirmed by one of the top AS experts in the country (a colleague of Simon Baron-Cohen at the ARC Cambridge) who went over my whole case.  This expert also trains UK clinicians in assessment and diagnosis of ASCs and has a huge amount of experience and is very senior.

Also, the private clinician who diagnosed me, used to work for the NHS at consultant level, has 35 years of experience has published many papers.  My assessment with him consisted of several interviews with myself, interviews with people who know me, access to medical information, school reports and past performance appraisals.

Conversely, when I went for NHS assessment, they managed to label me with a box-set of individual labels that all added up to Asperger's, admitted to 'overlap with autism spectrum behaviours' but refused to diagnose me.  And both my children are autistic - hello - autism is genetic!  I also have a wealth of medical and other genetic evidence, which they have ignored.  And their assessment consisted of a one hour interview, not interviewing anyone else, no clinical testing tools - nothing.  Very dismissive and cursory job overall.  I asked for a 2nd opinion, which repeated the same experience!

NHS diagnoses are *not* objective.  They are trying to avoid diagnosing people as they don't want a drain on services.  They also will not be accountable for their errors and failed diagnoses.  They cover-up errors and collude.  They even lied about who was present at my 2nd assessment so I have proof of this.  The PALS complaints process is also a joke.

On what do you base your 'quackery' and 'over-diagnosis' claim?  I would like to see links to relevant research proving these claims.

Any clinician, who wants to maintain credibility and not have his reputation ruined would not contemplate giving false diagnoses.  I would imagine therefore that any such incidences of such behaviour are very rare.

So basically you are talking rot.  I have evidence to the utter contrary of everything you say.  Be as skeptical as you like, that doesn't make what you say true.  And misleading people over the true situation is not right.

It looks like I may have to go private now. GP and CMHT claim that the screening is enough. How is it? It was one hour long. That is nowhere near enough time.

Accalia said:

My GP was very reluctant to send me for assessment, advising that Asperger's in Adults did not exist. I was somewhat surprised therefore to find out that in my referal letter to CMHT he did actually mention it!

Having said that, CMHT have advised they don't think I'm 'severe' enough to warrant any Mental Health help and have bounced me back to the GP. He, fantastically, is fighting my corner however and is intending to go back to them and get them to take me on!

It may be nothing, but my alarm bells are ringing, reading this, Accalia.

If your GP thinks that Asperger's in adults doesn't exist he/she may actually be fighting to get you assessed by the Mental Health team as, in some way, delusional (i.e. you are believing you have something that 'doesn't exist').

Now, I may be completely wrong - it may be that your GP has researched Asperger's since saying that he/she thinks it doesn't exist in adults, now knows better, and has changed his/her mind, but the thing that concerns me is that Asperger's, and Autism more generally, is not a mental health condition, and so the CMHT may be the wrong people to assess you!

It is a developmental disorder.

It may, however, be the case that you have to go through Mental Health to get to see a psychologist (and note, only a psychologist trained in diagnosing autistic spectrum disorders can give you a definitive diagnosis, not an untrained psychiatrist), but be sure that he/she is fighting to get you assessed for Asperger's and not something else.

Maybe do some research yourself - find out who in your area does do assessments of adults with Asperger's, and take that information to your GP - if he/she doesn't then refer you to them, make an appointment with different GP and get a second opinion.

Hello all

Thanks for your comments and opinions.

Shortly after posting the original post I went ahead and obtained private diagnosis.  I'm not sure if I'm allowed to post the name of the Psychologist as it might be seen as an advertisement, but it was a really great experience - very therapeutic and insightful, and I have learned a lot since by following up on recommended reading.

Someone on the thread made the good point that there is a difference between people who just want the information for explanatory purposes and those who actually require help from the system.  I was in the former category so NHS recognition doesn't bother me.

One point that didn't emerge from the thread is that a lot of people actually prefer private diagnosis because you retain full control over future disclosure.  I can choose non-disclosure to future employers if I want, safe in the knowledge that they can't discover it through my medical records.  The Psychologist who diagnosed me said a lot of people go private for that very reason, to keep the information out of the 'system'.

Anyway, thanks again everyone.  I'm glad I got my DX and would encourage any of you thinking about it to go for it.

My GP was very reluctant to send me for assessment, advising that Asperger's in Adults did not exist. I was somewhat surprised therefore to find out that in my referal letter to CMHT he did actually mention it!

Having said that, CMHT have advised they don't think I'm 'severe' enough to warrant any Mental Health help and have bounced me back to the GP. He, fantastically, is fighting my corner however and is intending to go back to them and get them to take me on!

When the CMHT don't accept a private diagnosis you would assume they would consider ASD and put you forward for a NHS diagnosis. In my case they are conpletely refusing to do this because of the way they have ignored and victimised me.

There is a an extremist culture prevalent in most public organisations. Total risk adverseness causes huge problems and it is used as an excuse to not do a job. 

The simplest interventions and  help would have made enormous differences to myself however they have prefered to run a hate campaign against me since my ex wife worked for social services. Women are always the victim and a socialcare professional always tells the truth. As George Orwell said "All animals are equal but some animals are more equal than others"

Acceptence of a diagnosis in my case would mean I am the "victim" and that can not happen some one may be sacked from their NHS/Local Authority job for life!!!!!!!

I also agree with a lot of you on here and especially around so many of the difficulties you had/still have are similar to mine.

The issue with lunch and wanting to hide in the library is soo me when I was at school.

Congrats Hope on your degree, I hope you enjoyed it.

I'm about to start Uni at 19 this Sept, grades permitting .

I understand what you'll are saying regarding CMHTs. I'm in a NHS youth mental health service (OCD) but I also have Childhood Autism (Diagnoised at 16 in CAMHS).

I am sooo dreading the local CMHTs, including the one my dad is in, as they really don't understand, to the level required or if any about Autism.

This is why I'm hoping to join the local Autism Strategic Board Partnership (including their transition sub team ) to fix the local issues with NHS and council (Local Authority) funding, adult diagnosing etc issues.

By the way, if the Care and Support Bill proposed by the Government is made law then it will be great as means care is personalised to the individual and is written in law. Chew that Social Services.

BUT funding is the usual issues unless the Gov fork out more money for this desperatly underfunded area.

Also does anyone have experiance of mental health support workers like Support Time and Recovery Workers or others as Social Services are funding them to support me in the home with independant living skills.

This would be great but the person I have doesn't really understand ASD and the service is rubbish - tick boxing - not flexable to REALLY meet an individual's needs.

Thread: http://community.autism.org.uk/discussions/health-wellbeing/living-spectrum/social-care-support-time-recovery-workers-teenageryoung  

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urspecial.

Hi  Yvanna,

I think it may be best for you to wait a bit  if you can for a NHS diagnosis as you never know it could be better than expected and free.

If you still feel this not enough or the assessment is not what you expected then by all means go ahead with a private diagnosis.

urspecial.

I've had a private diagnosis but my local  CMHT is refusing to accept it or refer me through the NHS. My situation is reversed because the CMHT pursue criminal charges against me a forensic psych report was damning and got me a 12 month sentence and contained historically incorrect infomation. The prvate diagnosis was given by Professor Digby Tantum he is a leading specialist and has an NHS clinic in Sheffield.

  The NHS are not acting impartially or in my best intrests. They don't like being wrong.

The last four years have been hell for me.

There seems to be a serious lack of understanding of people with Aspergers. The people who need help are possibly the people who are in the worst position to seek that help (if it exists). Poor social communication has got to get you off to a bad start.

longman said:

Agreed, it seems bizarre but you only get help, it seems, if you've got OCD or depression or some other secondary problem.

I've only really managed to get what little help I have because my previous landlord, who has a mental health condition, started threatening to kill me - that got me straight on to the top of the council housing list, and a Housing Support Officer - who is brilliant, if a little limited in what she can do.

Even having Crohn's and 'dystimia' (which is like 'depression lite'), as well as Asperger's, doesn't seem to warrant any extra support (even though if it wasn't for my mum taking me to hospital appointments, my Chrohn's would be significantly worse than it is now).

And, I guess I too would probably be classed as a 'borderline' case - and is also probably why I wasn't diagnosed before a couple of years ago - on the surface I may seem to be mostly 'coping' and I don't cause 'society' much of a problem, on the whole, so I get ignored.

Regardless of Aspergers it seems that in the eyes of the doctors I am coping well enough not to need any help with diagnostics. True, I had an assesment but the outcome leaves me puzzled. I would just like a reference point so I can move on. With the internet I have a wealth of literature to explore but for some reason a diagnosis that makes sense would give me the understanding that I feel I need.

Its a bit worrying what longman and scorpion are saying about people not being given a diagnosis even though fit the criteria. Personally I don't think I would be looking for any help as such. I just think that if i understood myself then I might feel more confident as I could attempt to get people to understand me. I wouldn't have to put up a front so much which would be a relief as I think there would be less misunderstanding.

When I went to my GP for a referal he said that Aspergers was just a 'label'.  I think he was missing the point that with the 'label' also comes understanding and that is true with any diagnosis.

I appologise if I have deviated from the initial subject at the start of this thread.

@ Yvanna I think that if it is possible you would would be happy with a private diagnosis that the NHS might not recognise then thats OK (if you can afford it). However, as I have experienced, an assesment even fom the NHS may leave you with an unsatisfactory outcome. If you are not diagnosed with Aspergers you will not necessarily gain any alternative reasons or insite into your behaviour/problems. I am not saying it won't be useful.

I might probably be classed as a 'borderline' case as well, similar to what Longman describes. I am a lot younger than Longman - 24 years - so I don't know how I will be when I am Longman's age, but I have been to my local University, where I achieved a 2.1 Honours Degree in History. I had no support at Uni, but coped with the academic side, although my socialising was minimal and I always went straight back home after lectures, or after a brief look in the Uni Library - the Uni is a 10 minute walk away from where I live with my parents - I would not have been able to cope with halls for I am far too controlling.

However, my OCD and anxiety meant I did not go into the town-centre for two whole years, neither did I leave my home-town in all this time. The CMHT put it all down to OCD, but I knew there was more to it than this, which eventually led to me being diagnosed with aspergers.

I have most of the symptoms of AS, but I am not a 'typical' case, whatever that is. A lot of my problems stem from my OCD and anxiety - a 'comorbid' condition, to use psychiatric speak. But it is the classic chicken and egg scenario - what came first, Aspergers or OCD?!.

I don't have any real sensory issues to speak of, which does sometimes make me question my diagnosis. Of course I don't like noise when I am trying to concentrate or trying to get to sleep - this irritates me a lot - but then this is the same for many people without AS. I was scared of fireworks as a child, but have no other 'sensory issues' as far as I am aware, other than not liking crowds or busy environments.

I find it very hard to make friends, but on the face of it I come across as 'normal'. I know the social rules because I have learnt them, but struggle with the more informal rules and spontaneous social scenarios. I need routine, but am not so rigid that I can't tolerate any change - but it has to be on my own terms.

Interests: I have had extremely narrow and obsessive interests in the past, which gave me a lot of enjoyment but also led to tantrums when I could not pursue them.

I do have a very uneven skills profile, but this was more a problem at school than it is now. I do struggle with organization.

The only thing which makes me question my diagnosis, when I am in a bad mood, is my relative lack of sensory disturbances. I would say that my OCD is more disabling than the Aspergers. If I only had AS traits, I probably would not have needed a diagnosis. But the diagnosis has helped me deal with my OCD because my support is Autism specific, and this has helped me. I am quite a literal and rule bound thinker, and cope best with a lot of detail and concrete information

Agreed, it seems bizarre but you only get help, it seems, if you've got OCD or depression or some other secondary problem. 

The Health professionals, perhaps because their main experience is with clinical patients with ancilliary problems, have little grasp of the actual effects of aspergers by itself.

Referring back to the title of another thread (I nearly left it as this thread!), my main concern now is growing older. I cannot find out much if anything about how age affects aspergers.

For me a major problem is isolation. I don't form close friendships or relationships. I'm not a recluse, I get out and about and get doing things so I know a lot of people, but not to the extent that I could really ask a favour. I've been looking after myself for 37 years - I've no-one looking after me - the buck stops with me.

Having had cancer over a period two to four years ago, I got through mostly on my own, though relatives visited periodically.  But day to day I had to fend for myself through the chemo, and the bad reactions, and the loss of immunity, because I'm hopelessly bad at getting people in to help.

So getting old and infirm is largely a concern about how long I can cope on my own. Going into a home would be my worst nightmare.

I've heard of that, longman.

And to me it seems bizarre. However, I think it comes down to the health professionals being aware that there is so little help and support for adults on the spectrum and that if someone is somehow just 'muddling along', but has a depressive personality, it's better to tell them "don't worry, you're fine", than "you're Autistic, but don't expect any support, because you're not going to get any".

Also, I think, longman, and probably you too Jon, would be described as 'sub-clinical' - i.e. yes, you are on the spectrum, but you've developed strategies that allow you to cope, and your situation in life is such that you don't, in some sense, 'have a problem' fitting in with society - even if that is only a surface appearance, and underneath you're really struggling.

In short, if you don't 'appear to have a problem' then, for all intents and purposes, you don't 'have a problem'.