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. 

Parents
  • 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! :) 

Reply
  • 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! :) 

Children
  • 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.