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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 Lee

    I was late diagnosed at the end of last year, aged 62.

    Although I was expecting it, and 'needed' the diagnosis to make my employer take my needs seriously, it still took a lot of coming to terms with.

    In one way, I was quite amused by it all.  To me, it meant I could finally 'be myself' in a lot of things, rather than acting.  And I must say I have given up a lot of the acting I used to do, with the result people are now saying I have 'changed'.  In other ways, there was a sense of regret for what might have been had I had the diagnosis years earlier (notwithsdanding that autism was not really understood until fairly recently, and it is still not understood in the wider world.

    I also am getting certain allowances at work.  It took a couple of months before I was confident to 'come out' about my 'condition'  I thought hard and realised it is not anything to be ashamed of,, and in a way, I am quite proud that I am 'different'.  To me (and I think  autistic people in general) it is neurotypicals who are strange, its just that for some reason we are thought of as the strange ones.  It is dealing with the ninety nine per cent of neuotypicals that causes the problems.  I am more convinced than ever now that it is NTs who require the support workers!  They have very strange ideas and then wish to inflict them on me and others like me,

    Even though I now have a support worker for a couple of hours a week, my employer is still under the impression that I can be 'cured' and that is a mental health condition.  True there are mental health conditions involved with me, not least severe chronic anxiety, but they are under the impression that my autism has some sort of switch which just needs fixing to enable my autism to be turned off.  And this is my greatest challenge in the workplace now.

    I think the greatest help anyone can give an autistic person is to allow them to be themselves, not try to change them into someone else.  And also the ability to listen to the autistic person - there is a whole lot of information and experience inside me .

    I don't want to take over the world.    I just want to be left alone to do my job (and anything else) without interference.  Unfortunately, the way society seems to be organised nowadays means that any ideas of different ways of doing things are looked on as a threat to the order of things.

Reply

  • Hi Lee

    I was late diagnosed at the end of last year, aged 62.

    Although I was expecting it, and 'needed' the diagnosis to make my employer take my needs seriously, it still took a lot of coming to terms with.

    In one way, I was quite amused by it all.  To me, it meant I could finally 'be myself' in a lot of things, rather than acting.  And I must say I have given up a lot of the acting I used to do, with the result people are now saying I have 'changed'.  In other ways, there was a sense of regret for what might have been had I had the diagnosis years earlier (notwithsdanding that autism was not really understood until fairly recently, and it is still not understood in the wider world.

    I also am getting certain allowances at work.  It took a couple of months before I was confident to 'come out' about my 'condition'  I thought hard and realised it is not anything to be ashamed of,, and in a way, I am quite proud that I am 'different'.  To me (and I think  autistic people in general) it is neurotypicals who are strange, its just that for some reason we are thought of as the strange ones.  It is dealing with the ninety nine per cent of neuotypicals that causes the problems.  I am more convinced than ever now that it is NTs who require the support workers!  They have very strange ideas and then wish to inflict them on me and others like me,

    Even though I now have a support worker for a couple of hours a week, my employer is still under the impression that I can be 'cured' and that is a mental health condition.  True there are mental health conditions involved with me, not least severe chronic anxiety, but they are under the impression that my autism has some sort of switch which just needs fixing to enable my autism to be turned off.  And this is my greatest challenge in the workplace now.

    I think the greatest help anyone can give an autistic person is to allow them to be themselves, not try to change them into someone else.  And also the ability to listen to the autistic person - there is a whole lot of information and experience inside me .

    I don't want to take over the world.    I just want to be left alone to do my job (and anything else) without interference.  Unfortunately, the way society seems to be organised nowadays means that any ideas of different ways of doing things are looked on as a threat to the order of things.

Children
  • in reply to Trainspotter

    It's interesting that you say you wanted to be yourself. At the moment I'm not sure who I am anymore. I've spent so long trying to be what people want me to be to 'blend in'. Part of me thinks I've got this far in life, why change now. But another part thinks you've struggled most days to get through the day when others seem to drift through with relative ease. So why keep up the pretence? 

    I've not told my colleagues, only my manager. That's mostly to let my employer know I more than capable of doing my job, but just give me the space in which to function - you'll get more than your money's worth if the conditions are right. I don't want my colleagues to know in case they think I'm suddenly getting preferential treatment or I've changed and suddenly developed a sympathetic disability overnight.

    I'm still trying to come to terms with it. Having the diagnosis has been a mental whirlwind.