Misunderstanding of Autism

I'm in my late 50s, diagnosed at 55 having suffered many years of misunderstanding.  I used to work in IT with a senior and well paid job, but when I told my manager I suspected I was autistic, he did everything he could to make sure I didn't work again, including telling me to reassess my life because autism wasn't acceptable in the workplace. He tried to persuade me to take my own life.

I now work as an Advocate in secure mental health hospitals - on a fraction of what I was earning, and at a level I can't really live on. That's not the problem, though. 

I meet a LOT of neurodiverse people in acute and secure wards who are there because just they are different, and don't conform to the expected norms of life (e.g. not eating as regularly as others, having obsessive interests that make sense to themselves but not the mental health teams, hostile personalities because they want to be alone and don't require, need or want interaction with others, especially when they don't share their opinions.).

Today, in one of the hospitals I visit I met a young lady, newly admitted, who I was told was verbally agressive and to be careful of. I knocked on the door and asked if I was able to come in to talk. They accepted me in, and one of the first things they told me was that they were autistic. We immediately hit it off and could understand each other, because we could understand each others experiences and difficulties being accepted by society.

Staff were amazed that I was able to talk to this lady so quickly!  We all know why I could!  One of the social workers didn't believe either of us were autistic. For me, it was because I am a calm and very caring person.  Their attitude is that we shouldn't seek diagnosis, and it is the others, who don't understand us, that are the problem.  While I would like to agree with them, I needed to get my diagnosis to demonstrate to the company I used to work for that my boss was discriminating against me.  I am much happier now I know why so many things were harder for me as a child and young adult.  To be honest, my 30's, 40's and 50s have not been great because I felt that I was like a fish out of water in the world, so I built a brick walled tank around me.

What are your thoughts on diagnosis - i.e. is it just a fad, like I was told today? Is it helpful? Why, when you are (highly) intelligent do people not believe you are autistic but also don't accept you because you of your autistic traits? I'm finding it really hard not to lock myself away in my cabin and seal myself off from society, enjoying the music I love, building Lego, programming Raspberry Pi's and geeking out. 

I have deeper thoughts about humanity and its (lack of) existance, but it's nothing I can and will do anything about.  I'm too much of a pacafist/vegetarian to halm any creature, which is apparantly another fault of mine!  Argh! We can't do anything right!

Parents
  • First of all, thank you for doing the work you do! I worked in a mental health unit many years before I knew I was autistic and it's not easy work by any means. Back then, ten years ago there was a huge lack of understanding of autism and obviously people who are autistic can display challenging behavior on wards because they're locked up against their will with no routine in unfamiliar surroundings and strange people. 

    I'm newly diagnosed, 32 years old and still very much coming to terms with it. I've been listening to a book 'Spectrum Women' and I find myself laughing at how much I relate to the content and it's almost funny that I've spent the best of 30 years blind to the fact I'm autistic and just struggling along. I haven't told anyone, only my partner knows and now my entire management team as I'm requesting reasonable adjustments. I think in time the diagnosis will allow me to be easier on myself, when I can't do something or I'm overwhelmed or upset, it's okay, I'm autistic and I need my routine, my safe spaces and time to process things. When I was diagnosed the psychiatrist explained that in recent years understanding of autism has changed and it's leading to more people being diagnosed so no, I don't believe it is a fad. 

  • Thank you so much for this reply. It's how I feel too.

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