Would you ask a wheelchair user to compromise on their disability?

I went back to the house for tea with my husband. He was feeling anxious and not up to going out anywhere. So I boiled up the pasta and sauce I’d previously bought and cooked the garlic bread he’d bought that day.

After feeding the dog, we both walked her. I don’t think we ever taken her together on her regular evening walk before!

I asked him how he’d been; it didn’t take long before it started getting heavy … somehow I’d anticipated that things might get a little difficult, and despite already being tired after a poor night’s sleep, I managed to actually have a proper conversation!

He said that me mentioning that there were things that I wanted to say to him but didn’t feel able to was causing him anxiety. I took a deep breath and started to speak.

I said that I found the idea of ever moving back in with him difficult for a number of reasons; these being that I am beginning to understand how my brain works differently from his and most other people’s and there are certain things I need in order to deal with life – these things conflict with behaviours of mine that he’d complained about in the past:

Routine: I need routine. Not just in order to fit my life together, but I find unplanned disruptions to my routine deeply distressing. I said that I felt frustration and rage when my routine was broken – I have always felt that way and it has caused me to act out. I can defer the emotions, but they must be paid. Routine helps me regulate my emotions. He has said that he finds my adherence to routine controlling.

Special interests: I need to be able to devote time to the things that engage my brain. They also sooth and regulate my emotions. He has said that these can take over my life and consume all my time, leaving nothing over for him.

Notice of difficult conversations: I have observed that when I am prepared for a difficult conversation, the chance of shutdown or meltdown greatly reduces. If he could see his way clear to forewarning me of these conversations, I can then take responsibility for making sure that the other prerequisites are met (that I’m rested, fed, watered, and distractions put aside, etc). He has previously said that he feels controlled as to when he can start a conversation with me and has his own mental checklist of when it is OK to talk to me.

I suppose they are a list of conditions; he did say “where’s the compromise?”. I didn’t directly reply, however, as I thought “would you ask a wheelchair user to compromise on their disability?”. I held my tongue because he’s not yet at the point where he accepts that I may be autistic.

He commented that sometimes things just have to be said in the moment – fair enough! I know that if you let the moment go that there will never be a better time to address an issue. I guess we’ll just have to cross that bridge when we get to it.

He also questioned how much of this is behavioural – ie learnt from my upbringing. That’s impossible to say, because emotions weren’t ever discussed when I was a child … which is hardly surprising with my dad, whom we believe is probably ASD. Mum I’m less clear who she so avoided emotions (other than nice ones). He believes that some of these behaviours are learnt; this is indeed a possibility, maybe that learnt and inherent play off each other.

He said that this felt like another obsession, to which I replied that hyper-fixation is an ASD thing – in a way, being hyper-fixed on autism is possibly a confirmation of the diagnosis.

I tried to explain some of the other attributes of ASD that I have always suffered from, but I’d also always assumed that everybody experienced these issues: problems with background noise, quotes and references from books and films popping into my brain, music playing. There were loads of others – so for another time!

I observed differences in the way we both experience emotional overwhelm and how those different experiences require different strategies. I feel that I can learn to manage mine by accepting that this is how my brain works. I don’t know how he can manage his – his is related to his history and his mental illnesses, rather than a brain dysfunction.

We briefly discussed seeing a marriage counsellor – whether that its to help us accept that it is over (because neither of us want to believe that), or whether that would be to help us live and love together, we don’t know. Nothing was decided.

We’d talked for about two hours and I was really done – he kept returning to the subject, but my brain could no longer focus. He stopped after another thirty minutes.

So, we watched a bit of telly and had a scone each, before we hugged and told the other that they were loved and I headed back to the flat.

I was ready to get straight into bed and do my reading, but I had a load of Microsoft notifications telling me that my account was compromised. Initially, I thought they were phishing messages, so I deleted them, however the various Microsoft apps – including the authenticator – were saying the same thing. So I had to change my password.

I read for thirty minutes under the amber reading lamp, but I still wasn’t tired. I tried to sleep, tossing and turning for ages. I did get off, only to wake again in the night with music in my mind and replaying the evenings conversations … that’s something else that somebody with ASD does a lot!

Photo by Jakub Pabis on Pexels.com

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