I feel NHS failed me and other questions

 am in my mid 50s, female and have very good reasons to believe I have high functioning Autism. Not only resonate all the posts here with me, but I have felt different my whole life, so much so that I studied Neuroscience at University. But never did it occur to me I might have Autism. That only came 6 years ago.

I wanted a diagnosis so I can at last 'fight the enemy'. Just for me as I have been clueless my whole life and thought I was merely 'really weird and bonkers'. 

I always suffered from Anxiety, my whole life, was always 'weird' [but likeable - I was told]. I have routines I don't break and in short I fit absolutely EVERY single criteria the NHS has to diagnose Autism.

Not only that, but I did a RITMO autism test and it came back as 'strongly autistic'.

Husband has read symptoms and agrees I have all of them, which can make life sometimes difficult. Anyway, I went on a waiting list and was seen after 5 frigging years, only to have 2 video sessions and one in person. 

I was diagnosed as: Eccentric and stereotypical German [I am German, living in the UK for over 30 years], but not autistic. He based this on eye contact [which I learned at my first job as a hairdresser and have adopted as a 'safe' thing to do, despite hating it. He also said I have the right intonations when I speak and lastly they called my friend I have since childhood, spoke to her on the spot and asked if I had a toy I was preferring and she said no, because my favourite 'thing' I have forever been obsessed with is Ghosts as a kid, horror as a teen and the esoteric and occult and horror as an adult, so it was missed. The German doctor like most Germans did not see eye to eye with Autism and it is really ahrd to have any mental illness diagnosed. 

So they closed the book on me. 

Now I am here, still suffering from anxiety, fear of social gatherings, boredom when speaking with people about anything but my main interest, misreading communication cues big time, overreacting to change, inner turmoil when something is 'unjust', talking too much, too loudly about topics that I find interesting, having to flee social gatherings after a while, having very limited interests but very strong, hate making friends and have [apart from my husband] only two [in Germany] whom I know for more than 30 years [one 54 years]. I have high sensory scoring because I can't stand loud noises, have issues with being touched and more, can't do teamwork, can't do overtime, not even by one minute or the injustice feeling sets in as I already gave 100%. I also self harm when I can't express myself any longer.

I don't know what people mean a lot of the times and misread their intentions. I have learned to adapt. I suffered so much adapting, but I didn't know there could be a name for it.

A friend of ours who is far more 'normal' than I am, who holds eye contact and has the right intonations and has no obsessive single interest however was diagnosed recently [probably by a private doctor] and I felt stabbed in the heart.

I can't wait another 5 years to be seen, I probably only have ~20 years left. I feel so helpless and so forgotten, dismissed and pushed through. Nobody ever saw behind my facade I have adopted and can't switch off.

I don't know what to do. Here I am with still the same problems and no specific help.  A private doctor costs £2000 we don't have. So for a while I thought I was just an awkward moron and a bad person again. Maybe I am. 

This is where my questions come in.

1. I KNOW I am different, I lived in my body all this time, but as they used the following in my diagnosis as 'not at all' autistic I want to know if these things really rule Autism out.

- I read early and maintained a deep interest in words, linguistics and foreign languages [still now, I am fascinated with roots of words etc]. Can some Autistic people read early or do they all have difficulties?

2. I had very few friends and all of them approached me. So I did end up in a friend group, because they found me interesting. I was in the group as a teen and found them helpful in going to clubs whilst they were a safety net. Some other transient friends I actually told to leave me alone as their presence was too much for me. 

- Considering there were friends in my life and I do have interesting tales to tell, [because I am obsessed with weird stuff] does this exclude Autism or are there others who have similar experiences.

3. I went to Paris on my own. The first time I went as an au-pair with a school associate, we weren't even friends. He left after a day and I stayed. Having a safe room and a family was giving me enough security and I enjoyed the autonomy for the first time in my life [18 years old]. I did an apprenticeship as a hairdresser as this is what you have to in Germany at the time. I enjoyed the work but didn't like the public. So immediately after 3 years I ran away to Paris again. This time on my own. The day before leaving I had a panic attack and an emergency doctor gave me a valium injection. 

- Do outrageous decisions [I am always doing extreme things, like marry my husband after 2 weeks - still married over 30 years] exclude Autism?

What about these?:

- Does being artistic [but not being interested in using it] exclude Autism. I prefer logical science?

- Being overly clingy?

- Can Autist have a sense of humour?

- Being loyal and doing work impeccably?

Oh there are so many other things that are 99.9% certain Autistic traits I had throughout my working life. I also read that women are harder to diagnose. I feel apart from the few questions above that I fit all criteria and then some. 

Again, I feel lost and as if nobody really heard me. They listened but only to my often wrong words. But maybe they were right. I don't know.

What can I do? I feel so helpless. 

  • one thing is for sure is that you can always expect the NHS to fail you and not do their job.
     

  • I was also diagnosed at the Lorna Wing Centre, a year ago at the age of 57. That's why I have my Chigwell logo! I had a 2nd opinion assessment after my GP obtained out of county funding from my local clinical commissioning group. The staff there were lovely, I agree with DreamyDiva.

  • That is awful for you. I'm so sorry you had to go through such a horrible experience. 

    I was diagnosed with Lorna Wing Centre. They had very long wait list but it was worth it IMO as they were patient, very understanding and kind in every way.

    If you can I highly recommend them! :) 

  • no problem dude, everyone knew what you meant ... it just also happened to be funny!  :-)   

  • I hate working with these fiddly keyboards! Anyway I've corrected it

  • Apparently I am typically German AND 'just' eccentric. I asked where my oh so obvious 'eccentricity' may stem from, but got no answer. I have a hunch...

  • Hence I am here. I do indeed know myself better than any stranger could ever. Nvm their credentials. 

  • I'm sorry for your awful experience.

    Perhaps it's not about the formal diagnosis. You sound like you're really self aware and have done loads of research- you know yourself better than they do. Don't doubt yourself.

    It's rubbish that you haven't had the support you deserve but it doesn't stop you joining a support group or researching or even getting a few sessions with a therapist who specialises in asd? 

  • I know right? That's why I laughed at first. But it ain't so funny now. 

  • I hear there are places you can go to for a provste diagnosis,

    y'know ... i misread that and thought ... er she is not going to need one of those!

  • I hear there are places you can go to for a privae diagnosis, though I understand these are not cheap. The point is though, that they know what to look for. 

    It just sounds like sloppy thinking as well as stereotyping to see eccentricity in terms of nationality. 

  • I am autistic and I went to work in japan for 10 months.  I think this was more to do with learning that I just had to endure whatever came along than anything else.

  • The whole 'Typical German' things almost like Monty Python; to be honest.

    But, then again, reality is more surreal than fantasy.

  • You really have been let down by the psychiatrist who failed to diagnose you. My daughter was recently diagnosed and she could read from an early age and in fact was obsessed with books. She also has friends, a sense of humour and even empathy. It sounds like you didn't get a diagnosis because you didn't fit the stereotypes relating to men and boys. You're not a moron or a bad person.  It sounds like you already know the answer to, ' am I autistic? ' and you're waiting for confirmation from a professional, but do you need their permission to be yourself? I can relate to a lot of the things you say too. Overreacting to change, overwhelm at social gatherings, disliking small talk, forcing eye contact. I can relate to all of these. I'm not pinning my hopes on a diagnosis because I'm aware that I might seem too 'normal.' Instead I'm trying to accept myself as I am and stop looking for validation from others.  

  • Thank you, that is very helpful.

  • I think it is possible to make a formal complaint against the NHS, but I'm not sure how. I think there was a thread here about it a while back.

    You can go back to your GP and try to get a second assessment, but I think you might end up with the same person, so you would need to be able to bring more evidence to support your case. For my second assessment, I spent a lot of time researching autism and produced a long document listing my autistic traits. I made sure to show this to the psychiatrist, as there were things that were not even discussed at the first assessment.

    Alternatively, you might find that it is enough for you that you know in your own mind that you are autistic and you don't want to go through the whole process of assessment again. There is little support for autistics, so there is little practical benefit from assessment, unless you need some kind of support or adjustment in the workplace.

  • Thank you for that. I needed it. My husband was also shocked by the stereotype diagnosis. It wasn't official of course and the doctor said ' I don't want to sound offensive..but' before it , but the German doctor literally came to that conclusion. I don't even know if she was a psychologist or what as she never ever spoke to me at all. Which is very patronising and condescending of all the problems which affected me my whole life and often resulted in negative outcomes.

    But what can I do? 

    I am stuck and can't see the woods for the trees. This is stressing me out so much. Any nice words or ideas are very welcome. I hate having to 'fight' about it but the injustice is driving me mad.

  • I was also told I was not autistic at my first assessment. I eventually got a correct assessment, but it took a long time. It sounds like they diagnosed you based on English stereotypes about Germans, which is really shocking.

    I don't think any of those things exclude autism. I read early, I have a few friends, I have a sense of humour (most people on this site do), I am creative and loyal. None of these things exclude autism, although impulsive decisions might also indicate ADHD as well (the conditions often co-exist). Autism is a spectrum disorder, which means it manifests very differently in different people, so one person might be able to do things another can't. Unfortunately, some psychiatrists and psychologists won't recognise autism when it comes with a level of functionality, even just a moderate level of functionality.