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Late Diagnosis and Outcome

Jordee

Hi

I was diagnosed in May this year aged 46.

I referred myself for a diagnosis after many years of suspecting something was going on due to family and colleagues joking about my autistic behaviours.

I support people with autism at work and was always able to see and understand more than others why certain people felt a certain way or displayed behaviours as a result of something. That understanding came from my own difficulties and feelings from situations I experienced and could match that to those I supported.

Following the meeting, I was expecting a positive outcome of an autistic diagnosis as this would tick all the boxes that I had questions for regarding many aspects of my life.

When the confirmation came that I had high functioning autism it was both expected and a shock. What surprised me most was the shock aspect of it. It hit me like a ton of bricks and took weeks to come to terms with it. It was something I never expected to feel. It was meant to be relief and understanding. Instead I went through a whole grieving process as my life replayed out in my head and all those situations I've struggled suddenly had a whole new aspect to them.

What I'd like to know is, for others who were diagnosed later in life, did the confirmation of autism help/hinder/improve/devastate you in any way? 

Now I'm getting used to my label, I think it will help me. I've told my managers about it and as now they understand some of my complexities around certain things I do. I get certain allowances now which I felt I didn't get before.

I've not shared the news with anyone else. Not out of shame, but because I'm still me and once people know about the label, I don't want people thinking they have to be different around me or not be themselves when they joke about the things I do.

Regards, Lee

Parents

  • Hi.

    I was diagnosed in March 2017 (only 5 months ago).

    I've struggled all my life with being 'different/ weird/ *insert other degrading insult here*'.

    It got to the point where a few people in my life put it down to me just being 'stupid', or at times I was just 'trying too hard to be different'. I have an interest in mental conditions anyway, & I happened to stumble across autism in my research many years ago. As most of the information concerned high end autistic children, I didn't think much of it. It wasn't till a short while later that I watched a programme that highlighted the condition on the more high functioning side. I even joked at the time about the similarities between me & those kids, & a short while later I did the online ASD test & scored rather high.

    That was when I realised that there was a very high possibility that I had ASD. I researched more into it, & hearing people actually talk about their experiences really hit me like a ton of bricks. So much suddenly made sense, it was like being given a big book of answers to the questions I had through my life, why some things did or didn't happen. Why I struggled so much with some things but excelled in others etc.

    I eventually pushed to get a diagnosis because certain people in my life were making things difficult, & I was sick of trying to explain myself. I knew if I had an official diagnosis, then people would actually start taking me seriously.
    I had to wait an entire year for my appointment. During that time, I researched more, read more of people's experiences & watched more videos. I lost count the amount of times I was left in floods of tears as I watched videos of people explaining their condition, how it affected them etc. It got to the point where I knew I would just be going to these appointments to get it confirmed & have it placed into my medical records.

    But; funnily enough, even when it was finally confirmed, it was still incredibly overwhelming.
    I had people completely against me seeking out diagnosis, I wasn't given much support at all during that year as I waited. I felt so alone, & frightened. I was full of doubt, anger, fear. It exaserbated my depression something chronic, & having those two psychiatrists say to me that I was definitely autistic... It felt like an alternate reality for a few moments. I struggled to keep my tears at bay, & I felt such overwhelming relief.

    That being said, I am still discovering & learning things about myself. It's only been a few months, & even after all the research I did, I'm still coming to terms with a lot of things... I'm also cutting myself some slack & not being quite so hateful to myself anymore. 

    I know it's going to take time, & I imagine it's going to take quite a while for you too. Either way, good luck with your journey :)

  • in reply to Autistic Introvert

    It's been reassuring when reading about how other people struggled and put it down to them thinking they're thick or stupid. Ive given myself so much grief for not grasping what others do with relative ease. Knowing it's beyond my control helps in a way but its still frustrating. 

Reply Children
  • in reply to Jordee

    Yes exactly.

    I've had plenty of people putting my differences down to me being 'stupid', or 'lazy'. I guess that's just proof that even they couldn't figure out what was 'wrong' with me, so they just went with 'she's so stupid'.
    I've been called all sorts through my life, a classic case of bullying because you're autistic I suppose, I read about it a lot & it hit me quite hard when I realised that this was probably one of the main reasons I was targetted so prolifically by bullies all through my young life, & sadly a few of those bullies also included family members.

    But yes; reading about others' experiences, watching videos & having people explain how they deal with things, what they find difficult etc has helped immensely! :)

    & yes I also share your frustration in knowing that this is something that I just cannot control no matter how hard I try. I definitely still need to properly accept myself & my limitations, & start focusing more on the positives rather than the negatives.