Published on 12, July, 2020
I was diagnosed almost 2 years ago aged 35. Currently I am really struggling to cope with existing. I am probably described as low functioning. The very basics, such as making food for myself, overwhelms me. I need a lot of care from my partner and he runs the house.
I used to be good at some things, especially after understanding my diagnosis. I could focus on something and steamroll through it. Projects. I’d get good ideas and I’m a perfectionist so could execute them well. But now I am nothing but distracted, disjointed, and feel pressure on me from all sides which is uncomfortable. It’s uncomfortable to be awake. I don’t know who I am. I struggle to leave the bed, let alone the room.
My diagnostic team gave me good care and a follow up appointment, but say they cannot help me any further. I don’t know where to go for help on how to live as myself and how to not be in mental pain every day. I just don’t feel like I should exist. Everything is wrong and I’m screaming inside.
I have been turned down for an ADHD assessment after my diagnostic team referred me due to scoring very high on the preliminary test. I feel like the symptoms I struggle with in the moment are ones linked to ADHD rather than autism. But no one will help me. I’m making my family sad by slowly declining more each week it seems.
Who will help adults with autism? I need help with overcoming food issues as well. I struggle to eat balanced food or eat at all sometimes. And just eat chocolate. I am so lost and know I can’t kill myself because I have children. Who can help me? I don’t have a regular GP and our appointments are done via email.
When I feel like you just expressed, I tell myself two things.
1. I've been here before, it always passes after a while, I know it can be endured.
2. I also tell myself that NO, no one is coming to help me, I need to snap out of this and get on with things myself! I find a small target and just go for it. anything to start establishing a pattern of doing constructive or joyful things again.
You KNOW you can do some stuff better than the others, and although most of it seems useless and unwanted, sometimes being you can "save the day".
I've started forgiving myself for my useless days, but acknowledging them as well. Seeing them pile up makes me want to do something about it. and that saying life begins at forty? It's true, all you have to do is get there... (I'm not saying what sort of life begins at forty, as for me it took another couple of decades to wangle a bit of happiness and contentment, but I'm glad I stuck at it)
Thank you so much for your kind and very wise words I Sperg
I really like these ideas you’ve suggested - they are very positive and encouraging. What you’ve said is really helpful to me - thank you. It’s so easy to feel overwhelmed and lose hope - but you’re right - it’s important to make a start and do something positive - even if it’s the tiniest step forward. Light on the horizon - that’s what I’m looking for (imagining myself with massive monocular searching the skyline…..).
Writing item 2 isn't what people want to hear, and I feared for the reaction I'd get.
In truth, we tolerate unpleasant truth far better than the normies, and at least give difficult ideas a hearing. I am quite convinced one day that Autists will be selected for positions of power & authority.
On my worst days, I get a sense of achievement and well being out of simply feeding and cleaning the cat's litter. The thing about cats is that if you do stuff for them even with a depressed and reluctant attitude, they are still happy to see you and appreciate what you do..
I understand what you mean. My son felt this when we asked him if he’d like to go to a specialist school - he felt he wanted to stay in a mainstream school because when he looked at specialist school most of the people at least appeared to have more significant difficulties than him and he thought he might not fit in. They didn’t seem ‘like him’. However in retrospect I do wonder if staying in mainstream was the best thing for him - because he felt like such an outsider there. He has mixed feelings about being autistic - he’s not one of those people who view it as a ‘superpower’ - often he feels very negative about it because he feels being autistic makes his life much harder. He doesn’t want to be defined by it and he doesn’t only want to mix with other autistic people (personally I much prefer autistic people to be honest). We’ve talked about autistic dating websites etc and he doesn’t like the idea of that either - again he doesn’t like the idea of autism as a separate category of people that he belongs to. He wants to see himself in much broader terms than that - and I can understand why. I feel differently now though - I’m starting to feel that autistic people are my ‘tribe’ - albeit a tribe that mostly don’t want to meet up and be together very often!
Definitely and I 100% agree when you say about non autistic people also struggling and we all have vulnerabilities and strengths. I too don't like the terms high/low which is why I put them in inverted commas. I think the notion of high/low is interchangeable depending on the day and environment. I suppose i was tying to say I'd like to meet people who have a similar life to mine.
I’m not sure how ‘normal’ anyone’s life is really though. I have plenty of neurotypical people in my family who are highly successful (in the conventional sense) but they are far from normal in myriad ways. Lots of those people are incredibly screwed up and dysfunctional. My eldest is autistic - went to Oxford Uni and has had relatively well paid jobs, has a girlfriend, a nice flat, lived abroad etc. They are planning to have children one day hopefully. Just like many neurotypical people in all those respects. They have there struggles but most people have struggles - even the most functioning neurotypical people can have mental health problems at times. We’re all human beings, we all have strengths and vulnerabilities. In that way autistic people are no different. Lots of autistic people achieve amazing things and have wonderful relationships. This is why I don’t like the terms ‘high’ and ‘low functioning’ - it casts a value judgement on people. My youngest didn’t do at well at school as his sibling - but he’s really intelligent and very wise. It really is very complex and subtle. Autistic people are a vastly varied bunch of people and as far as I’m concerned they all have a lot to offer - even if they are non verbal or struggling with many everyday activities. There’s a lot there - you know? A lot to value, a lot to appreciate, a lot to learn from.
That really good to hear how it helped your son. For me, I don't really want friendship, just understanding. I don't meet many autistic people and a lot of stuff on here I can't relate to. It does mean I question my diagnosis. I want to meet people who have a job, a partner, a family. A seemingly "normal" life. I want to know how people negotiate their autism with their loved ones, or how they cope with a normal day.
I'd really like to set up a group in my area that meet once a month but I don't know where to begin. I don't do social media and I don't know how I'd reach out to people.
I agree with this. I think many of the groups like this are more aimed at people with learning difficulties. It would be good to have groups aimed at people with autism who were….. (I don’t like the term high functioning to be honest) ….but you you know what I mean? My eldest went to an RPG society at Uni and that had many neurodivergent people and he made really good friends there (which was the first time he’d really done that). He also met his girlfriend there. It was life changing for him.
Yes and also need peer groups for adults who are "high functioning". In my area there are only groups for carers, autistic children or those with more complex needs. Or general mental health groups. I found one but it was more of a befriending group and you needed to be on social media to join. Hardly inclusive. I just want a place I can meet with similar people to share experiences.
I'd start one off but I haven't a clue where to begin.