Journeys End

[Stella180]

Approximately a year ago I posted about my initial assessment and how the outcome of that meeting wasn’t quite what I expected. It led to complex thoughts and feelings. Anyway I’ve been on quite a journey since then.

I was given information about a local support group for adults on the spectrum and decided to join in January. I’ve managed to make new friends and recognise and understand my own traits and learned to set my own boundaries. I have a place where I can just be me, no masks, no judgement.

I had a few support sessions with a psychologist and my final diagnostic assessment was last week. I was informed that the details gathered during the assessment “suggested a diagnosis of ASD was appropriate”. I have to wait for a full report to be sent out.

It’s hard to accept that I am Autistic. I’ve been blissfully ignorant for the majority of my life and yes, I admit that looking back I can see that those traits were always present, hindsight is a wonderful thing, but now I’m asking myself what if I’d known earlier? Many of my struggles could’ve been avoided or handled differently, I could’ve had better support to help me deal with things.

There is a sense of relief to finally know where I stand, but also a tinge of bitterness and disappointment. There’s a lot to process and it ain’t gonna happen over night but any tips on how to work through it is greatly appreciated.

[PearCider]

I can understand that, and yes you're right, if you'd been diagnosed as a child all sorts of wonderful things could have been done and it would all have been very different... although more is known about ASD now than was then, so to a degree you were born at the wrong time.

If it's any consolation, I was 53 when I was diagnosed; after the diagnosis I got nothing, no new friends, no supportive place, no support sessions, absolutely nothing at all. Some talk about support, a completely meaningless support plan with a lot of empty words, but it all melted into nothingness like a mirage in a desert. So you've had way more support than I ever had. Be grateful at least for that.

What's supposed to happen is that other people knowing you're ASD should adjust to that and interact with you accordingly. They need to change because you can't. You're not supposed to apologise for having ASD because it's involuntary, it's how you are. The reality is that other people are unlikely to change their behaviour towards you, some of them will be cross with you because of it and you'll end up apologising for ASD over and over again. You're supposed to be able to say after a bit that you've been on a journey (that seems to be the trendy phrase) and you've discovered lots of things and you feel so much better. The reality is likely to be that little around you will change significantly.

I wish I could say lots of positive things, but I really can't. Make sure the people around you know you have ASD and what it means, including at work. If anyone really can't live with it and is causing you a lot of grief, try and have a sit down with them and talk about how you feel about what they are saying. If that doesn't work, sorry but you need to distance yourself from them. Avoid big social gatherings that you know you can't do. If you're going to meet people stick to small groups of hopefully understanding people that you have some familiarity with. Give yourself time, because it will take a lot of time to be comfortable with people. Remember you will have trouble reading how people feel and they will have trouble reading you, so you may need to tell people how you feel in what will feel an artificial way - imagine they're blind and can't see you, because in a way they are and they can't.

Most importantly, don't blame yourself for having ASD. If you didn't have it you'd have been someone else entirely. You aren't bad or wicked or careless. Half the world may thing that you're unbelievably annoying, but half the world will be wrong.

The only specific thing I can say I did that helped me was to make spreadsheets for things I was struggling with, like impossible instructions or conflicting instructions. I set them up so that they would ask me questions, allocate weighted points from the answers and then tell me what to do. Not the same as having what I believe they call a bestie to listen to me and say it, but worth something. The odd thing is that these days I seldom use those spreadsheets, but I feel comforted just knowing they're there if I need them.

[nakedphil in reply to PearCider]

Diagnosed at 58 not even talk about support just go away and research it if I want to know more.

It is my fault for being on the spectrum according to DWP and am suitable punished at every interaction.

[Stella180 in reply to nakedphil]

DWP assessors are incredibly ignorant. I have a F2F assessment in a couple of weeks and I’m dreading it.

[myhealthneeds]

Hi my husband was diagnosed in late 50s after a fight all our lives when he thought I was an unreasonable person and was trying to make his life rubbish! Our lives could have been so different had we known when we were younger. I accepted him as he was but he didn't accept me and did everything he could to upset me and get rid of me. I could not understand why as we didn't know about Aspergers until our foster son was diagnosed in various ways when he was in his 20s. Then the penny dropped. My hubby also had a lot of food problems that affected him badly and made him angry and distressed or OCD. He changed at the end of the week once we took action about that after getting him checked. It would be nice to get to know you more.