Not autistic diagnosis

I am in the same position, this is why I came here. I am 58 years old and waited 5 years for a diagnosis. The outcome was that I had autistic traits but otherwise I am 'just' an eccentric typical German. At first I laughed but this is already 2 years ago and I suffer immensely. When I complained, I got no reply apart from someone saying they forwarded my complaint and I will hear back. I never did. After 2 years of waiting I told them I don't need their diagnosis, but that is rubbish. In todays society you need things in writing or lose out and suffer. 

I have all the symptoms of ASD all of them, but during the one time they saw me in person, I made eye contact [something I taught myself when I was in a job which required this- Hairstylist, it was hard to do but now my husband says I overdo this, by staring deeply too long at people. You can't win.]

They called two friends of mine in Germany who may be my best friends but they didn't nor do they knwo what I go through on a daily basis. 

The person who called them wasn't even a specialist, just a German GP who was chosen because she speaks the language. They based their diagnosis mostly on those two things. Also I couldn't immediately think of things I am obsessed with. Later on I remembered that it doesn't have to be objects, but could also be interests, so they thought I don't have any, when in fact I do. 

I'll be honest, I have slipped through the net and it makes me feel worse than before. I have so many difficulties but can't use my explanation, because without a diagnosis it carries no weight. 

I can't give up as it eats away at me because my sense of justice is so incredibly high that giving up is not an option. If I had the money I would go private, but money is lacking big time. Instead my quirks and questions when it comes to dealing with the world are treated as nothing more than being a 'weird' person. 

I had this my whole life. I have no witnesses, because Autism wasn't only not a thing back in my youth in Germany but it never crossed my mind that I had it. It is teh reason I studied Neuroscience, to find out what was wrong with me. But nothing fitted until one day I read about Autism symptoms and all of them fitted like a glove. It has been 7 years now and I have been tossed away by the NHS and have no other options. It is interesting to see that others are experiencing the same thing. 

What options do we have?

I am in the same position, this is why I came here. I am 58 years old and waited 5 years for a diagnosis. The outcome was that I had autistic traits but otherwise I am 'just' an eccentric typical German. At first I laughed but this is already 2 years ago and I suffer immensely. When I complained, I got no reply apart from someone saying they forwarded my complaint and I will hear back. I never did. After 2 years of waiting I told them I don't need their diagnosis, but that is rubbish. In todays society you need things in writing or lose out and suffer. 

I have all the symptoms of ASD all of them, but during the one time they saw me in person, I made eye contact [something I taught myself when I was in a job which required this- Hairstylist, it was hard to do but now my husband says I overdo this, by staring deeply too long at people. You can't win.]

They called two friends of mine in Germany who may be my best friends but they didn't nor do they knwo what I go through on a daily basis. 

The person who called them wasn't even a specialist, just a German GP who was chosen because she speaks the language. They based their diagnosis mostly on those two things. Also I couldn't immediately think of things I am obsessed with. Later on I remembered that it doesn't have to be objects, but could also be interests, so they thought I don't have any, when in fact I do. 

I'll be honest, I have slipped through the net and it makes me feel worse than before. I have so many difficulties but can't use my explanation, because without a diagnosis it carries no weight. 

I can't give up as it eats away at me because my sense of justice is so incredibly high that giving up is not an option. If I had the money I would go private, but money is lacking big time. Instead my quirks and questions when it comes to dealing with the world are treated as nothing more than being a 'weird' person. 

I had this my whole life. I have no witnesses, because Autism wasn't only not a thing back in my youth in Germany but it never crossed my mind that I had it. It is teh reason I studied Neuroscience, to find out what was wrong with me. But nothing fitted until one day I read about Autism symptoms and all of them fitted like a glove. It has been 7 years now and I have been tossed away by the NHS and have no other options. It is interesting to see that others are experiencing the same thing. 

What options do we have?

Are you living in Germany? 
i also sometimes do the staring thing and I was told that I have to make eye contact, then that I stare too much. So now I’m anxious about looking anyone in the eyes. Or I just make short contact once and then look away. 

I'm sorry to hear about what you've gone through, it sounds so frustrating. You do have something known as the 'Right To Choose' - I'm not certain to what extent this goes to, but I know you can use it for an autism diagnosis, and it is something I did.

Speak to your GP and mention you are after an autism test, and mention Right To Choose - this allows you to go through another healthcare provider, yet still have it paid for by the NHS. Psychiatry UK is an option, and so is Clinical Partners (I went with these). I would look them up and have a look at their websites, they both have pages about Right To Choose and how to go about the process. By doing it this way, you are going through a different testing/diagnosis process, which may result in a more accurate result - it's hard to say for certain because I've been through Clinical Partners but I have no experience to compare it with Psychiatry UK or the NHS. The waiting times are certainly shorter at the very least.

When I went through with this, it was difficult, time-consuming, and frustrating, but I got there in the end and the entire process (from first contact with GP to receiving diagnosis) was just over a year - vastly better than the rumoured 5 year waiting list via the NHS. Feel free to message/reply to me on here if you want details of how I went through the process or if you have more questions.

I think there’s a few things to unpack in there.

Firstly, you could have all the autistic traits but that wouldn’t be enough on its own. They have to be severe enough to be disabling / have major impact on your life.

I’ve seen talk of the “autistic phenotype” which refers to people who have autistic traits but don’t meet the diagnostic criteria.

My second point is that skilled assessors should be able to figure out if you’re masking and should use various tricks and questions to see if that’s what’s happening. Unfortunately I’ve heard of lots of different assessment methodologies and practitioners on here and some don’t seem very thorough.

Thirdly, there are other conditions which share a lot of the features of autism, such as ADHD and BPD. It might be worth investigating them.

Finally, you could always try a second assessment with a private practitioner, but this wouldn’t be cheap.