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Not autistic diagnosis

notthatmuchautistic

Hello,

This morning I have my diagnosis from NHS. they told me that while I have autistic traits and they understand why I would pursuit an assessment, I didn't  make the criteria for a diagnosis, they mention specially my empathy and my facial expressions, that are normal.

I don't  know how to feel. I have a child with autism and our similarities was what made me search for an evaluation.

At the moment, I have some accommodations at my job that are in place under the premise that I am undergoing the process of autism diagnosis. Those adaptations have made my life much easier  and I don't  want to cry every day when I am going to my job (like before).

I am guessing  that once my job knows that I don't  have autism I am losing  that help and I don't  know what to do.

I don't  want to be the kind of person that take advantage  of the system and have benefits  that doesn't  need, but I do struggle and now I don't know what to do next.

I hope this post doesn't  offend people with autism, I know this forum  is for the autistic community and I am not sure if I should  post.

Parents

  • 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?

  • in reply to TierMutter

    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. 

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