Late Diagnosis and Outcome

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 :)

Reply
  • 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 :)

Children