Paying Privately for Adult Aspergers Assessment?

BUT.......

I was told something strange when I got my diagnosis. They said they didn't always give people a diagnosis who needed one. They gave me a diagnosis because it was clear I could use it advantageously, which has proven to be the case. They said they sometimes didn't give a diagnosis if it was felt someone wouldn't be able to handle it well - ie if it might lead to further depression or mental ill-health.

Now maybe this is nonsense - I may have misunderstood, NAS Moderators have you heard of this?

It might help if I give an indication of my own position. As I'm constantly reminded by several correspondents on here I'm a borderline aspie: I think that's broadly correct - I've been lucky on the whole.

I was diagnosed seven years ago in my mid-fifties as having good coping strategies - which was frankly bizarre as I had a complex life of evasion tactics, counter difficulty tactics and self-imposed rules and procedures that gave me a very narrow path through life, either side of which I got into real difficulties.

I actually went through diagnosis just to find if the Asperger literature applied to me, as though it seemed to fit, I was scared to let go of my coping strategies, in case the whole world caved in. Hence I was rather surprised to get a diagnosis. I was able to read round the subject (being a habitual research junky anyway) and dump a whole load of hang-ups, baggage and nonsensical rituals. It gave me closure on a difficult past and vastly improved coping strategies and resolved my general lack of confidence and low self esteem.

So for me just having the diagnosis has made a huge difference, life has improved enormously, and as I was already engaged in helping other people on the spectrum, I found myself able to be useful.

OK that raises a big question - if it was so easy to sort myself out, was that just a matter of "sorting myself out" and am I not really aspergers? I suspect this is not far from where you say you are in the process without a diagnosis. It may be however you can use the literature on aspergers to help you to make your life easier.

The way it affects me boils down to three things. I seem to lose a lot in social interchange, leading to people getting annoyed with me. That seems to be down to somehow not understanding the social rules in a given situation and somehow not hearing or registering everything communicated to me. Also giving people misleading messages, being too loud sometimes, too close to people, not rersponding at the appropriate level or with regard to the occasion. I don't do eye contact.

Secondly background noise or complex movement is really destructive. In many social situations other people become unintelligible and it sounds like a foreign language sometimes. My own spoken coherence deteriorates as well. But I'm told this isn't peculiar to autistic spectrum.

Thirdly because I'm concentrating hard on following what's going on I get tired and then start to perform less well. I also "black-out" for periods. So people think I'm bored, or tired of a conversation. But some people think I'm a good listener because I'm visibly trying, so I get used as a shoulder.... - and am no good at telling people I'm not able to help.

Is that enough to be aspergers? My interests are narrow but not that narrow. I can communicate well in formal situations and write well. I'm not to badly organised. I'm not prone to depression and I'm only obsessive in ways I can manage.

So maybe I shouldn't have been diagnosed.

Point is though, why is it just about whether or not you get diagniosed. People clearly have these problems. The Health profession is too obsessed about whether or not its autism to actually address the problem - many people have real needs for help, but are being ignored - by the very people whose chosen profession is to help!

Thats alot to take in longman.

Thanks for the post.

The thing is that I was assessed at 'Sheffield Aspergers Service' and don't feel I can challenge their findings. If I could explain my feelings and behaviour another way I would gladly do this. Its just that I always end up back at the same place with the same problems that just so happen to be similar to features of Aspergers. I have tried to work it through in CBT and also went to see a GP again. They seem think that I am able to reprogram myself and move on. I nod and try to communicate but I know that I am just failing. I work part-time and to them I appera to be OK. I don't do anything that is a problem for society. I am still not happy though. I have been prescribed anti-depressants in the past but they did not solve anything.

I am not sure that my GP will think I was treated inadequately as they have ticked all the boxes. Until my life gets noticebly worse in the eyes of my GP I don't think they will be concerned.

There are going to be changes in work that I am really concerned about and as I don't feel in a position to discuss this with my manager. I will no longer be working on my own and my hours might change. If I leave my job I don't think I could get another.

My range activities are narrow.

If I was no longer with my partner (of over ten years) I would have little in the way of a social network. I havn't made any friends for a long time and socialise rarely.

I see that my difficulties could be exasperated in the future. It might all seem pesemistic. But I want to understand myself now so that I can help myself and seek the right help if needed. i don't want to arrive at a place worse than I am now.

I certainly identify with the frustration you are experiencing. Have you had any contact with your local parents group? Some of these are bizarrely anti adult diagnosis on the supposition that such diagnosis is taking funds away from children. Others are more constructive, particularly as the first children when their group was formed are likely to be adults. They aren't the most obvious recourse for an adult, but depending on where their sympathies lie, they might be somewhere you can get help.

There may be a local branch of NAS you could talk to (they vary a bit too). But you need to seek out some informed advocacy to give you some support. There is the question whether you were appropriately assessed.

The programme Rewarding & Fulfilling Lives initiated by the Government in response to the Autism Act is supposed to improve the lot of adults seeking or having a diagnosis. Local authorities responsible for social care, mental health, learning disability etc were supposed to send a progress report to the Department of Health by 16th February this year - called the self-assessment form. In it they answer a series of questions about diagnostic and support services, funding for autism, staff training etc.

You can request a copy of this. Some local authorities have them on their website. The quality varies widely. Mine has decided they are only going to provide support to people on the spectrum who are learning disabled, and has given the government two fingers - to which the response from Government I guess is likely to be slow or non-existent.  But it would be worth trying to find out what's being done locally. Find out the name of the portfolio holder for adult social services - there's adice on how to do this on the NAS websites.

If you feel inadequately treated you have as right to complain and seek redress. Maybe the NAS moderators can offer some suggestions.....

longman said:

(and I guess an adult asking for a diagnosis must be delusional - although he didn't go that far as to say so). 

Hi longman, as I have said in another post, my Asperger assesment result was that I wasn't on the spectrum ....... I ask myself if I am delusional as I asked for the referal?

I'm sure my life would have been easier if AS had been recognized when I was younger.  On the occasions I received therapy, after requesting referral from my GP, the fact that it didn't work puzzled the therapists and left me feeling  it was my fault that the treatment had made no substantial difference.

Hope said:

Those people with AS who do not require any support are very much in the minority, and yet this minority appears inflated because individuals who do not struggle at all get a diagnosis just in order to understand themselves. But in this situation self-diagnosis could be just as effective.

You puzzle me when you say  this, Hope, because in my opinion self-diagnosis means nothing.  I certainly thought I had AS before diagnosis but I needed that dx by a professional to confirm or otherwise that I was on the spectrum. 

Ah well that's me off the "borderline" cliff-hanger? Perhaps?

It is rather hypothetical - intervention in my childhood or teens would have probably consigned me to an institution. There are so many adults now whose lives have been very gravely damaged by the kinds of intervention that happened in the 60s, 70s and 80s

To get back to Yvanna's question and willowtree's, it does seem that private isn't providing unambiguous solutions.

The problem is getting effective NHS diagnosis across the country, with GPs facilitating rather than obstructing, and being properly informed, and some kind of infrastructure in place after diagnosis.

Also I would hope to see some fair play between diagnoses of those with marked difficulties for whom there will be greater access to appropriate support and diagnosis for those who can gain benefit and greater independence from diagnosis.

There have been arguments in the past about whether people should be told of their diagnosis if the cannot handle it, or should lose their diagnosis if they "get better", even though people's responses to AS can vary over a lifetime.

To get a fair system we need to avoid any kind of distinction between levels to which people are affected. The distinctions would obviously apply to need for access to support. But I do wonder about systems which define AS only by current need for support.

Also, at present, people who do not need support often have no other recourse, should they have short term needs.

I find the whole thing bewildering. I just hope some of this dialogue helped Yvanna and willowtree with their decisions.

From what you say Longman, it seems as though you have struggled, and so  you confirm my point: most people with AS struggle to a greater or lesser extent. You say you have never received any support, but do you not think that your life could have been easier if you had received some guidance when younger?.

Thanks Hope, but I'm still puzzled.

You say: "those people with AS who do not require any support are very much in the minority".

It is my perception (and I may be wrong), that there are a lot of adults who have been diagnosed later in life who do not get any support. Do you have evidence that people with AS who do not need support are a minority?

Are there people getting a diagnosis simply to understand themselves, and for no other reason?

The diagnosis for me did greatly help in understanding myself, both as closure for what happened to me in the past and to help me improve my coping strategies. But I did need the coping strategies, and before the diagnosis I suffered greatly from low self esteem and low self confidence, as well as spiralling anxiety which I strived hard to keep in check.

Part of what we have been discussing is whether people with aspergers can succeed in life, and we seemed to be moving to the view that people like me were borderline because we found a way to get by.

However a lot of people have no real choice but to strive to get by. Is surviving proof of being borderline?

There is no harm self-diagnosing if you will not require personal assistance from social services. As already stated, I am rather against private medicine, but if an individual wants to go down this route then that is okay, too, but I cannot help being sceptical.

The NHS should assess those adults who are struggling, perhaps through mental health problems, chronic stress, bullying  or employment difficulties in order to provide them with the support they require. The vast majority of adults with AS do struggle one way or the other and this is a statistical fact. It is almost an inevitability that some problems, requiring support, will arise due to the condition. Those people with AS who do not require any support are very much in the minority, and yet this minority appears inflated because individuals who do not struggle at all get a diagnosis just in order to understand themselves. But in this situation self-diagnosis could be just as effective.

Agreed in principle, True Colors. The reality has quite wide regional variations, and some people, even with quite marked needs, are finding it very hard to get an adult diagnosis on the NHS.

Although I got my diagnosis after about six months waiting for an appointment, it was very nearly shipwrecked because my GP referred me to a psychologist on the grounds aspergers only affects children (and I guess an adult asking for a diagnosis must be delusional - although he didn't go that far as to say so). 

Although that was seven years ago there are plentiful stories (including on the forum) of people encountering the same scepticism from GPs now. People are seeking diagnosis but coming up against delaying tactics and other obstacles.

Some parts of the country are good about diagnosis. Elsewhere there seem to be problems still to be overcome.

The thread of this discussion, though often going off the rails, was whether the original poster Yvanna should seek a private diagnosis.

My advice (based on my own experience) is to keep pressing your GP for a NHS diagnosis.  I found the pack from the NAS contained helpful information on how best to do this, particularly "Diagnosis: the process for adults."

If I understand Hope correctly, her argument quoted by True Colors whereby people who have got by in life without significant problems have lower priority for NHS diagnosis:....

Does that mean it is OK if you are in that category to self-diagnose or to get diagnosed privately?

That would alleviate my previous concerns

And I agree True Colors. I was just suggesting reasons as to why GPs may be reluctant to refer some adults (who do not have mental health problems) for diagnosis. If adults do not require support then diagnosis is more  needed for personal catharsis then as a means to social care.  I am simply acting as the devil's advocate by raising the point that the Health Service cannot diagnose everyone due to the limited resources which it has at present.

Hope said:

People who have got by in life without any significant problems and who do not require any support, but simply want answers as to why they feel different and have certain difficulties, may well find themselves at the bottom  of the priority list for NHS diagnosis, because people who are really struggling  (often with mental health problems) are seen (quite rightly) as of higher priority.  This is a question of ethics, just as who is entitled to cosmetic surgery on the NHS is a question of ethics.

It may seem to others that people seeking a diagnosis have got through life without any significant problems but  awareness of the fact that they are 'different' from others, coupled with a desire to 'be like everyone else' can cause immense problems including (among other physical problems) stress, anxiety and depression and a diagnosis does bring an enormous sense of relief.

Thanks, Jim, for the clarification. I am not arguing that no-one should seek private diagnosis, if this would help them, but I think it should be the port of last resort. My personal ethics are skewed against private medicine because I am sceptical of its validity (this is not to say that there is routine corruption, just that this is more likely under private medicine than in the NHS). But I understand that for some people any diagnosis is better than nothing

Hi, just to reply to the question about the NAS positon on this. Private diagnosis is covered briefly in our article about adults looking for a diagnosis. 

Our position is that adults may benefit from a private diagnosis, especially where this is something they want to obtain to understand challenges or difficulties they may face or to help explore concerns they may have had through life. 

However, beyond the financial implications, this is tempered for people who need to access important support services through social services and the NHS. The reality is that there isn't any guarantee that the NHS or social services would recognise a private diagnosis and for this reason we'd always encourage people to also explore diagnosis through the NHS. 

Without wanting to sound spammy we'd always encourage individuals facing problems with diagnosis to get in touch with our helpline, to see what help may be available to try and improve on what's often a difficult process for many people - 
http://www.autism.org.uk/helpline 

Obviously this discussion is focused on a number of different issues that it's interesting to see people exploring and sharing their opinions on - issues of ongoing relevance and importance to the autism community. With any ethical debate I think it's always important to be able to share personal opinions, which feels like what people are doing here. It may be a little further away from the original post but does highlight some of the views that people considering private diagnosis may face.

So, outside of causing offence, which I think as long as people understand this is a discussion of personal views, I don't think people need to worry excessively about this forum being dragged into ill-repute by an open and intelligent discussion.

However, always good to recognise everyone's views may impact on other people in different ways and try to be as open and clear as possible when expressing them.  

Again, there is a debate that needs to be had. One can't not raise concerns just because there is the off-chance you might offend some people, which I do not intend to do.

The NHS should, in my view, not turn down adults for assessment. Adults are just as worthy of getting their needs met as are children and young people. But doctors have to make decisions everyday about how they allocate resourses fairly, so that those who need support (of whatever age) get it.

People who have got by in life without any significant problems and who do not require any support, but simply want answers as to why they feel different and have certain difficulties, may well find themselves at the bottom  of the priority list for NHS diagnosis, because people who are really struggling  (often with mental health problems) are seen (quite rightly) as of higher priority.  This is a question of ethics, just as who is entitled to cosmetic surgery on the NHS is a question of ethics.

The NHS does not have infinite resources and so decisions have to be made. We could argue that the NHS needs more resources and money from the GOvernment (and I would not disagree with raising taxes on the wealthy etc), but at present the NHS is constrained and has to pool its resources. So we need to campaign for more NHS funding and resources - which would enable more adults to get assessed.

When I  asked my GP about a diagnosis I was told initially that my local medical authority did not carry out adult diagnoses because of financial constraints; the money available going to the diagnosis and  treatment of young people.  So diagnosis on the NHS is not based on individual need but on financial considerations.  In this situation the only alternative - for those who can afford it - is to go privately.

I was lucky in that after assuring my GP that since I was retired and didn't intend to ask for financial or any other help she agreed to attempt to get me examined by a psychiatrist and as a result I received confirmation that I was indeed on the spectrum.