Getting diagnosed on the NHS

In Dorset we have a monthly meeting in a social forma way, which is very nice for those with ASD, even at your stage. We have talks about relevant subjects

Thanks for the heads up. Any diagnosis will be for my own piece of mind rather than relying on it to get any benefits etc. I have not really looked into the NHS support side at the moment. It is very much the start of the journey. 

Hi I think a diagnosis would just be for me to explore what goes on in my head and how it explains things. I may not share a diagnosis widely, most people do not need to know. I am still going to be the same person so any diagnosis will have little impact on me day to day.

I have been made redundant three times in my lfe, and actually want it this time as I want to leave anyway. I would retire tomorrow to be honest, I will have plenty to do. I am already getiing imposter syndrome becuase outwardly I have a pretty normal life as I have always had a job (Except for about 18 months in the early 90's), mortgage, wife and have travelled a lot. In my head it is very diffrent.

Next thing I want to explore is meeting similar people face to face.

This website gives some good educational stories about life on the spectrum, but you need to ask yourself what would you gain from a formal diagnosis. There is not consistent agreement about diagnosis often, but knowing your personality is important to explain how you function and hopefully keep well and out of trouble. Your wife may find you difficult to manage but hopefully you can find a good solution between you. 

Planning your retirement with your wife is essential and important. When my job went I went to pieces and found life very difficult

Do you mean the NHS disputes the private diagnosis?

My experience now is as follows:-

1.  NICE Guidelines are that you have to be assessed by a team who can diagnose ASC And if they don’t then even appealing and/or raising a complaint is useless (Bean counting, ranks closing and backside covering).  Even their website is out of date as I only had one session with the NHS which is in contradiction to Pathfinder’s response above.

2.  You can get a private diagnosis which is recognised by GP, Employers and Government (DWP for PIP/Disability Allowance) but because it is not in line with NICE Guidelines then you do not have Asperger’s/Autism/etc by the NHS Autism Service in your area.

So, NHS Autism specialists are right and anyone equally specialised yet not in the NHS are wrong.

Hi Just a quick one to say I visited my GP today and she was initially sceptical but after a little talk she has refered me to my local mental health team for an assment. So now I wait...

Thanks for all the encourgament and info. Going to the doctors on Friday so will report back after then.

I started the process about a year back.  I also picked up a cancellation, before Christmas.  Had my first interview/assessment and felt it went ok.  i was really honest about things.  Had my second appointment this morning.  I do have Aspergers although it is now just ASD for diagnostic purposes.  What they aren't sure of is whether I have ADHD too.  I have a followup appointment to explore that which should come through in a couple of weeks.

The process was neither hard nor easy.  Just be honest with them and think a llot about your childhood prior to the interview.  Maybe write down things you remember from it.

I'm not sure how I should feel about the diagnosis.  So dont expect getting one to actually offer you anything besides a yes and the ability to get your employer to cut you some slack occasionally.

It takes a long time, and they don't give you a precise date. Both of these are pretty horrible to be honest, but hang on in there. It took over a year for me, and I thought about it every single day. I reckon at least three thousand times!

Absolutely do go and see your GP and seek their assistance. The NHS is able to do a diagnosis and then provide appropriate help and support should you require it.

I would suggest that rather than ask them to refer you for a diagnosis, help them first understand the difficulties you encounter in your daily life. The GP  may need to apply to the local NHS Trust to fund a referral, so they'll need to be able to articulate a justification. "I'd like a diagnosis please" is perfectly reasonable but tricky for them to translate into a funding request; inadvertently upsetting your wife the mental issues you've touched on will be far more useful to them.

The harder thing to do will be keeping an open mind and staying patient. Mention the extent to which you sleep, touch on the depression but also before you go try (this is hard) to articulate the nature and causes of that depression. (It's only now that I'm not depressed that I can differentiate between anxiety, stress and depression.) What you may find is that there are other explanations for some or all of these things, so work with your GP and help them find the best way to respond. They have a range of options available, and a diagnosis might need multiple assessment covering various different things.

i was in the same position - only one from B1-4 at my diagnostic interview. They couldn't identify Restricted and Repetitive Behaviours. Then I went for ADOS and as part of the chat during it I mentioned my lifelong obsession with radios and they decided that that fit.

Yes, please let us know how that went.

For me, I am reading Tony Atwood to see if I am Aspergers - so far it would seem that I would be diagnosed by DSM 4, but not 5 as I only have one definite characteristic from B1-4, and one other only maybe, and you need two min.

This is slightly confusing, but it looks like they have restricted the criteria for diagnosis in DSM5 to lower the number of people who qualify for expensive treatment. 

Have you gone through the diagnostic requirements and seen in advance how you might get on?

What were the books you wrote?

That all sounds very scary and I so hope you get good help. Making the first steps yesterday was quite liberating and made me really think about myself. Would autism explain lots of things could my learning issues with English and Maths be linked,  and my occasional depression, or my sleeping excessivley?

It is really the last year that has made me think so much about mental health. Last spring I was on a real high, my main obsessive subject, actually place, used my obsessiveness in a good way to win a planning inquirey and I am now a somebody at that place and writing my third book about that place. Then in the last few months I have been dealing with my 80 year old parents rapid decline into dementia, the toughest thing I have ever done.  

Will be going to the doctor on the 31st so will keep you posted.

• Thanks for that - will work on it and see what happens

Hi Edmund C, if you *are* autistic and have been living as if you aren't the hidden effort involved in doing that can certainly lead to a host of mental health impacts which tends to get worse over time - certainly what happened to me. It takes time to unpick, but if you recognise yourself in descriptions of autism, adopting that as a working assumption and readjusting your life as appropriate can be incredibly helpful and mean that you don't need your plan B.

I should add that, like you, the mental issues are getting harder to deal with the older I get, it is quite scary as I have no plan B if I were to lose my job. 

Hi Rob, I have just joined this site and was pleased to see your post as it is very close to my own situation.

I got a 43 on the test, though some things don't match at all, like being good with numbers. It is the social inadequacy which has done most damage to my life - I am 52 and have come through a year dealing with NHS mental health, but I had to diagnose myself and present to them arguing my case, trouble is I had no idea what is wrong with me so I went with Bipolar to account for hallucinations (explained by hypnogogia) and long term obsessive highs focusing on a single task, which I have been able to maintain for years at a time - I have written novels and poetry, hundreds and thousands of words churned out at the expense of actual life, and since I haven't recently been able to maintain the delusion that I'm any good, having taken some years to read between the lines of what my few readers were telling me, since then I am in a bad way for not having my obsession to fall back on.

Well, the original doctor wasn't convinced, but the 2nd one put me on all the meds for Bipolar, and I ended up feeling very unwell and depressed. 

It was the Swedish activist saying she has Aspergers which got me looking into it, and then I start reading up on ASD and next thing you know I am seeing somewhat of a match, although childhood is hard to properly recollect, so I don't know if I would be diagnosed, of even what the point of  diagnosis would be. 

Except to finally know what is wrong with me, and so explain my inexplicable life, lol.

Well, best of luck, Rob, with that path. As for me, today I rang the NHS doctor and left a message that I think I've been misdiagnosed, and please help as I am currently plagued with anxiety and depression, but have not called back yet.

I will be interested to hear how it goes with your doctor. I am in the UK.

Thanks for sharing your experience, even if it was not positive.  Time is not a pressing matter for me, but that may change. I have managed 50 years just thinking I was shy, socially awkward, obsessive and tactless, lol! Iguess diagnosing adults is not a priority for the NHS in times of cuts. 

Interistingly an old friend of my wife has a son, now an adult, who was always just described as having  'asberges', but obviously severe. Was told he  could never function as a 'normal' adult in terms of employment and living on his own. Never had any idea, as a layman,that a 'normal' (have never felt normal!) guy like me could even have something in the same ball park. Thats life

Hi Rob, I got diagnosed on the NHS last year. It was relatively easy to get my GP to refer me, then about an 18 month wait for an appointment.

I got a cancellation appointment because I said I'd rather go at short notice than wait for a "my" slot, so ended up doing the form-filling, that you normally do at home & post back before your appointment, in the waiting room, rushed and having to prioritise & decide which ones I would not do when I ran out of time.

My first appointment seemed to me like the interviewer had already decided that I'm not autistic and was gathering evidence to support that view. I could be wrong though, that's just how it felt. I think she was probably gathering evidence to rule out other conditions which is fair enough. As a result of that appointment I was referred on for an ADOS session, which concluded that I'm autistic. Interestingly, the first appointment seemed to indicate I had all of the required traits bar one, but the ADOS score was in no way marginal (& put me in the zone of classical autism not even Asperger, even though I had no language or learning delays).

I have to say that the whole process was a ball-achingly long and anxious wait, and the assessment centre staff seemed completely bereft of empathy for the anxiety suffered by their patients (yes they're over-stretched and under-funded but it costs little to be "nice" & give people time to articulate their concerns fully when they call) & this is ironic since the patients they are dealing with are generally more sensitive to delays, changed appointments, lack of clarity and a "fuzzy" process that seems to vary on each application. Hey ho.

I think you might need to be prepared for something similar, unfortunately.