“I cried when he confirmed it – how embarrassing – but it was all such a relief to know I wasn’t broken, just different”

Name: D
Age: 60-69
Location: UK

I think, for context, I’ll start with my diagnosis outcome, as I think that’ll make more sense of how I came at this. I’m ASC (the terminology changes so quickly), with a very heavy PDA profile. So now you immediately know if you’ve any experience of this just how challenging I can make my life :).

From a very early age I thought I was a boy even into my teens – I don’t know what magic trick I thought I could use but I expected to carry that charade on my whole life. Again for context I’m gay (it only requires small letters no biggie), I’ve been in a relationship for almost 30yrs – really is down to the patience of my partner that. I’d have run away years ago (a trick often used in distant past) as I think my biggest issue is emotion – I feel them but I do not understand them correctly. Being female, as I’ve learned, I use the mask trick and make out I do when I clearly do not. I’m now comfy in this skin – as discussed at diagnosis (all will become clear as I waffle) – transgender was never for me. Wilfully putting myself into the hands of medical professionals really isn’t a thing I can do. That in mind, I talked myself to a place of comfort with myself – to be honest I thought that would make my life a lot harder than it already was.

So repeated mistakes (down to lack of comprehension) meant the same things surfaced in my life – across the board. Work. Private life. Dealing with others. Family. Everything in life – the mistakes (as I see them) continued to repeat.

I met a lady on a fishing trip in France in 2017, who is autistic/adhd & we clicked (magnets we are). By the second day she was privately telling me I display signs – first being I stim. Always done this, my little bit of me that shows. My initial reaction was to blurt out how wrong she was. By the end of the week I was looking things up online.

I can’t remember being conditioned to think the following but I do – bad mental health is not a good thing, I can’t have it (I think that’s the PDA control thing), so to be considered mentally ill is the absolute end.

So I’d started to spiral after a difficult relationship issue, into the mother of all shutdowns which lasted almost a month. I did drink but I couldn’t eat or speak for the first 3 of those weeks. Shutdowns (not that I knew it for that at the time) had happened before, quite a few times, but nothing like this one.

I really had no other choice than to approach the doctor and ask for some help, this was done with the patience of all around me because of course I tried my hardest to avoid. Had I not done some (quite a lot actually) research about autism I’m not sure I’d still be here. My PDA brain decided it would be better to be autistic – as that was something OUT of my control, than to be mentally ill, which to my PDA brain is completely WITHIN my control.

I found the Oxford tests – TBF I did every test I could find that looked real – and this will make you laugh, it always amuses me – I can’t pass anything first time – anxiety takes over, hindering me, but I passed every single one! The relief I felt just at that stage was phenomenal! I reached out to groups – joined several – didn’t care for the politics in some, left loads, and I think I’m still in 2 – but the main one is women’s group you put msg on – firstly they didn’t mind if not diagnosed, they are supportive and they are just lovely people. I’m not a great participant but they are there.

I approached the doctor with my issues and got the usual anxiety and depression, given the obligatory pills – I tried, they don’t help, I stopped taking. Then on the second appointment I mentioned my thoughts to her. I’d gone armed as realised, mainly from group, how difficult it was to get them to not fob you off – sure you have idea about me now – you cannot fob me off! Outcome was she put me on pathway which, in my area, meant joining a six year waiting list if, after attending the local mental hospital for a pre assessment, they thought me worthy.

They did! I had to be on the ground floor, the window had to be open and large. I could not sit opposite the poor young man that carried this out but I had to be at a 90 degree angle. First part of that sentence was so that I could escape if necessary and second part was so that I did not have to directly look at him, or he at me. All my history later, they agreed I should go on list.

I was still really struggling mentally so they offered home visits – I think they thought me suicidal, I wasn’t at that point, I assured them I wasn’t, but I got the visitor anyway.

First person to come sat, chatted, took notes – pleasant but useless. I expected them to send someone who at least knew what autism was. The poor woman knew less than I did. This resulted in me over stimming – I’m a smoker so the tool of choice was my lighter. I could see she had noticed this but thought no more about it.

Too much of a tale to explain how all the next bit came about but a mixture of my own mistakes and just general life meant I needed to go onto disability benefits – I have the usual co morbidities we seem to also attract, mine being psoriatic arthritis and COPD, so I had to provide DWP with some confirmation of my issues mentally. A report was requested from MH, it came. That poor woman mistook the lighter stim for me being a small step away from setting fire to my home with us both in it. Apparently she was worried for ‘our’ safety.

I was a bit angry about all this and asked for visits to cease unless they sent someone who knew what they were dealing with. I went through 3 more people – all as clueless as their predecessor – then number 4 came with the news of how an autism assessment would work. Good, the fact they tried to prepare me for something that would happen in 6 yrs time, not so good I’d have forgotten it all by then.

The young man then tells me how –

I am to talk to ‘several’ clinicians.

I will be ‘filmed’.

This will then all be parcelled up neatly & sent to another set of clinicians, who will then decide if I’m autistic or not

….er no I won’t!

No I won’t!

And that is not happening at all!

Fortunately, at this point in the group, a few of the people had cottoned onto the fact that Wenn Lawson was offering private diagnosis at an extremely minimal cost! Of course I knew who Wenn Lawson is, so I jumped at the opportunity and contacted him. I think as a group we did him in! Not long after me we had the covid business, and all that brought, so he stopped doing them, so I consider myself extremely lucky.

I’m not a fan of Zoom but that’s how it was done. sent all requested background, resat the tests (I know they aren’t really – more indicators), we chatted – that’s how it seemed – and he confirmed I was autistic. We talked great length about body dysphoria and, although he christened me with the pronouns he/them, I don’t feel need to use them – I am comfy as a woman, albeit a boyish one 🙂 This happened a week before my 58th Birthday.

I cried when he confirmed it – how embarrassing – but it was all such a relief to know I wasn’t broken, just different. Next few days were a complete blur, really having difficulty recognising emotion, it’s a bit difficult to relay but at a guess…all of them I think.

I did warn you I can waffle 🙂

And what life is like now? For sure it’s definitely easier when dealing with officialdom – my card is marked – it’s in big letters at the top of my medical file (and I’ve seen it for myself), everyone talks to me like I’m a 6 year old. First thing to note is that pre diagnosis this would have infuriated me – I think the (today world speak) is ‘triggered’ me :). However, with new knowledge I just find it amusing but in a good way – at least these people now explain themselves fully, removing my need to ask a million questions – easier for everyone.

My life is still a struggle, I can’t lie. Emotionally I now find it harder to deal as my tendency to rationalise isn’t very emotional. If I’m completely honest it’s shut away – in the ‘must get round to’ pile. I’m busy dealing with the practical side of things like getting through the day lacking energy to do the things that must be done. My love for life hasn’t diminished though. Again I’ll be honest I’ve become more selfish of my time which is working so I think I’m dealing ok – we live and learn.

I’m churning out art which has become my passion – I can’t leave it be, but I’ve learnt to allot time so I can move from ‘this to this’ easier – that seems to accommodate the PDA.

My life is planned and while not a complete routine – again PDA I think requires some spontaneity – I’m coping better with things coming out of nowhere.

I understand me a lot better, I’m not melting down as much, though I do have me moments. If I do get caught in something I know is going to cause chaos a week later, I’m fortunate enough to be able to take time after it, as I know what is coming.

A major change has been me removing any toxic aspects from my life so I don’t see it, if you get me? Now I don’t really allow myself to become involved, or remove myself at earliest opportunity if I do. I never understood “not my circus not my monkeys” – now I do 🙂

I’m not a reacher-outer, so I wouldn’t look for help anyway, but I don’t think I need any help moving forward – I can do it myself now I’m armed with the tools. Seeing others in the same boat is useful for perspective.