Worried About Diagnosis Results

I had my assessment a month ago, it wasn't a nice experience 1st lady was lovely who did the practical assessment, 2nd lady not so nice. Lots of issues but main one was 15 minutes in, she kept going on about childhood trauma and how it damages your brain, I came from a broken home, like many children. Every time I answered her questions she was like " well it could still be trauma! " I burst into rears and asked if there was any point carrying on if she had made her mind up so early on. She also questioned me on the way Autism used to be diagnosed, not like the symptoms women present.. Any way it lasted 4 and a half hours with no breaks and for the next 2 days I could not function as brain was fried from the intense questioning, my therapist was very angry about it. They then got in touch and asked to speak to another informant and that was a week ago. 

Anyway they rung today and I get my results on Friday. I am so scared she is going to write me off as just trauma damage (most of which has happened in my adulthood with my inability to read and understand properly). I have been called the sensitive one, the weird one, quirky one, shy one all my life. I tick all the boxes for autism, its looking like my mum and her sister and her Dad were autistic and my brothers 3 kids are all diagnosed and I would say he is definitely on the spectrum. I have struggled for years, in and out of mental health services, no one knows what to do with me. I feel like if on Friday she says she has diagnosed me as just trauma damage and not autism. (i think i have both) Then it is time to give up, as I am tired of trying to understand what is wrong with me and why I find life so hard. Why I don't understand the way people behave, why I hate change, find food stressful, misunderstand what people say, why I think in black and white, hate noise and bright light, big crowds , why when I want to know something I investigate it within an inch of it's life, why I have to plan everything down to every little detail, why I have meltdowns. I could go on and on.

I guess what I am saying is if she say not autism, there is no where else for me to go ( even though I feel like I have found my home on these community sites and fb groups, the way everyone thinks and their struggles are so similar to mine, I finally feel like I fit in somewhere). But no diagnosis would feel like the end of the world to me and I do not know how I will cope. I know some people use self diagnosis, but for me it has to be official or it is not real. This is just my black and white thinking, I have nothing against anyone else using that description. It's just the way my brain works. So worried about how I will find Friday, already convinced what she is going to say Disappointed.

Any advice how I can handle this better please?

  • Please don’t leave the groups, I Think you are Autistic because by the sound of everything you have said like Black & White thinking  etc: I am exactly the same, honestly just get a second opinion if it comes to that. But I’m sure it won’t. X

  • Thanks, I have read up a lot about it, like massively (one of my quirks) and yes there is a cross over and there are a large percentage of autistic people who have PTSD. I honestly think I have both. So fingers crossed tomorrow goes well. 

  • Thank you. Yes I am going to try doing that, will make the next decisions once I have the results from the assessor. Hopefully she is nicer to me this time 

  • Please don’t leave. No matter what they say! You are part of this community, you feel like you fit in here which is the most important. I understand that it must be almost impossible to stop worrying and thinking about the outcome- i’m like that too- would it help maybe to tell yourself this?: You have now thought about your options in case you don’t get a diagnosis (eg. Seek second opinion, self diagnose etc)- you have planned for this but now there is nothing more you can plan because you lack the necessary information and you might get a diagnosis! . I find that stopping myself from thinking of worst case scenario is almost impossible but once I have given it some thought I can sometimes draw a line and tell myself ok i have thought about it, i have done all I can now I need to wait and see and then I can deal with it.

  • Sounds horrific. I've read a little about the crossover between PTSD symptoms and autistic, however,  there's also a view that many autistic people have had traumatic experiences which have given them PTSD or close to it (I read 70%). I consider myself in the latter category.

    I'm not surprised your therapist was angry. I'm angry for you as well, reading your post.  Whatever the outcome you should not have been treated like this, its not ok. 

    Whatever tomorrow brings, you could always seek a 2nd opinion or self diagnose and I'm sure most people in the community will accept that, so you don't have to leave!

    Hope things work out, take care,

    Joe

  • Thank you, i'm trying to stay positive. It's just I am such a black and white thinker and if she says I am not autistic when I feel I really am, I will feel a fraud and leave these groups, but these groups are the only place I really feel like I fit in. People who see and experience the world like me and it makes me sad to have to leave

  • Thank you for your message. Trying to stay positive and get through tomorrow morning. Feedback call is 9am, Just so used to being disappointed, hoping I have misread her as I am good at that Slight smile

  • Hi  Salsa

    Please try not to worry I know it’s easier said than done but you don’t have much longer to wait now, but I really just wanted to wish you the best of luck for tomorrow. I really hope you get your diagnosis my fingers and toes are crossed for you x

  • I guess what I am saying is if she say not autism, there is no where else for me to go

    Until you get the diagnosis there is nothing to worry about - find something else to focus on in the meantime as worrying is about as effective as trying to solve advanced calculus equations by chewing gum (lots of effort results in nothing getting done).

    Set up an action plan on paper - one set of steps if it is an autism diagnosis and one set of other steps if it isn't. This takes the thoughts out your head and has them safely stored on paper so you don't need to process it constantly.

    If you had an NHS diagnosis then there have been plenty of stories here about them being wrong, so an obvious possible set of steps is to work out how to set aside the money for a private diagnosis (probably in the region of £500). It is also likely to be a few weeks to get the assessment rather than years with the NHS.

    If the private diagnosis confirms autism then go back to the NHS and tell them and ask them to update your records accordingly. Note that they can't remove an assessment result but can replace it with a newer one.

    It is all pretty straightforward even if there is a sting in the tail of the price, but that is better than making yourself sick with worry.

    That would be my way to deal with this.