There is a new paper out entitled, ‘‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality.’
A really interesting paper and I’m glad it included statements from the study’s participants as it certainly heightened awareness that I am not alone.
“A recent study on autism language-use from the perspective of the UK autism community, found the term ‘high-functioning’ can underestimate the problems an autistic person can face on a daily basis (Kenny et al., 2016). Bowker et al. (2011)”
I found the above statement particularly pertinent re: high functioning. Wonder if anyone here can think of another term?
Also that double empathy problem is very real and the lack of ability to express needs and feelings... to carry on and keep “coping”, until you can’t, or don’t.
I'm intrigued when you say lack of ability to express needs and feelings. I struggle with this massively. It's not just because I don't know what to do or don't understand the feeling (sometimes it is). But other times I know what I should do/who I should go to but I just can't. I'm really funny about discussing any kind of need or feeling. I don't even like telling people when I'm not well. I've never understood this part of my behaviour.
I really get that, Binary. Part of my issue last week at work was a growing sense of anxiety about working around the bully on the Thursday afternoon. I could have just said 'I would like to work with someone else', but I didn't know how best to express it without sounding petty or like a nuisance. So I sat for an hour during the morning and didn't even seem aware of how much the anxiety was building up inside me - until I had the panic attack and had to go to hospital. I tried to explain to my manager yesterday why I didn't speak up... but I don't think she really understood. All I could really say was that although the obvious solution was there in front of me, I didn't know how to express it. I said the almost unconscious anxiety was scrambling my thoughts in such a way that I couldn't see a way out of the situation.
I also had to explain to the behaviour manager how what most people (NTs) would regard as trivial, or something to brush off, with me is something much bigger. It's not a tiny scratch, it's a gaping wound. And I fixate on it to the extent that it drowns everything else out. Other people have had run-ins with this woman at work, but they can still work around her and co-operate with her. For me, even seeing her thrusts me straight into panic/flight mode. She hasn't done anything to me that I can prove as 'bullying' (apart from one spiteful and passive-aggressive comment) - but the very fact that I can't understand her behaviour, or why she seems to have taken against me, makes me react. It's like trying to push two magnets together, north pole to north pole. It can't happen. I can't even take her to one side privately and ask her what her problem is with me, as other people might be able to do. It's why I can't face mediation... because I don't know how to express the terms of it.
Like Tom, that really chimes with me. The GP asks me how I’m feeling, and to be honest, I don’t know exactly. I’ve told my GP I struggle to identify and consequently express how I am, but he accepts my, ‘I think I’m okay,’ and off I go pleased to get out of the surgery. Tomorrow I’m going to try and change my GP, in the slim hope of getting a more inquiring or perspicacious GP.
I also don’t like discussing how I’m feeling or asking for assistance, although I recognise the consequences of inaction may be severe. Now, after much research, I have decided on a regimen of action that I can practise without having to explain to nor involve others, I’m feeling less ineffective. This research, that cost £200,000, concludes that current health provision is inadequate in both awareness and treatment. I could have told them that for a tenner.