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
  • I'm 55, fairly recently diagnosed although didn't come as any surprise to me, also work in mental health services in England. I think diagnosed/not diagnose should be a very individualised decision. I took the step because I went down the autism wormhole and got to the point where I felt lost and just needed an objective other to rebalance. 

    Thing is, that's pretty much it, a diagnosis. There is very little afterwards from NHS services in terms of 'ok, that's a starting point, let's create a map of things you find challenging and work out autistic ways of minimising their impact. So even if we do get a diagnosis, most professionals still don't spot the difference between autistic burnout and depression. Hence ending up in mental health units. Which, by the way there is building evidence makes things much worse for autistic people. 

    After my diagnosis I felt like I'd been dropped down a wormhole and was free falling with no idea where the ground was. Everything I thought I knew about myself after years of training and experience was at best half truth. I'm lucky, I have an autistic grown up daughter to bounce things off and a really compassionate line manager who has helped me keep work as manageable as possible. So it is possible to have good conversations with neurotypicals...just not common. 

    You sound like a compassionate and curious person. Somewhat common amongst autistic folks I find. Keep up the good work!

Reply
  • I'm 55, fairly recently diagnosed although didn't come as any surprise to me, also work in mental health services in England. I think diagnosed/not diagnose should be a very individualised decision. I took the step because I went down the autism wormhole and got to the point where I felt lost and just needed an objective other to rebalance. 

    Thing is, that's pretty much it, a diagnosis. There is very little afterwards from NHS services in terms of 'ok, that's a starting point, let's create a map of things you find challenging and work out autistic ways of minimising their impact. So even if we do get a diagnosis, most professionals still don't spot the difference between autistic burnout and depression. Hence ending up in mental health units. Which, by the way there is building evidence makes things much worse for autistic people. 

    After my diagnosis I felt like I'd been dropped down a wormhole and was free falling with no idea where the ground was. Everything I thought I knew about myself after years of training and experience was at best half truth. I'm lucky, I have an autistic grown up daughter to bounce things off and a really compassionate line manager who has helped me keep work as manageable as possible. So it is possible to have good conversations with neurotypicals...just not common. 

    You sound like a compassionate and curious person. Somewhat common amongst autistic folks I find. Keep up the good work!

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