Is there any help for us?

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. 

  • Thank you - that’s really interesting. I appreciate you sharing your thoughts about this. 

  • It isn't liberating it is frustrating and frightening I have had too.much hell in life I've had enough

    I need some help now

    I'm Just waiting to die otherwise

  • You need to request and a needs assessment through your local authority and you will be assessed by a social worker who will sign post and provide you support such as peer and employment support. they can also provide a health care plan which can get you access to certain organizations such as the employment team department of adult social services and can speed up the wait time to see a mental health professional.

    They can assist you with advocating on your behalf with you GP. I would recommend you looking into psychiatry-UK through NHS right to choose in order to get a ADHD assessment as the local trust are dangerously underfunded and delebraitley turning patients away with excuses.  

  • Just had the home treatment team just shove pills in my face and leave 

    I wish they'd stick them somewhere 

  • I refuse to accept that the rest of my life isva pointless struggle I will kill myself before that happens

  • Probably gonna run out of money at some point anyway

  • All I have left is tidying

  • Help from council with house, keep telling mental health services but they just want to give me tablets the state of house isn't helping but it's not 100% my fault me and dad looked after my mother for years , she had bipolar and it was hard to live with and keep house tidy

    I have been trying for months to tidy but barely made a dent,  I want to sell the house and move on but gonna take years for me to do on my own

  • Just to get an idea of who I'm talking to. I remember being thirty it was really, really rubbish!

    So what sort of help do you need? 

  • That's an area of life I don't think I've had much experience of.

    I've experienced extreme fear quite often in my youth, and I believe that is similar. I find that first giving myself time to cope, then applying logic and talking to myself reassuringly beats fear for me.

    There's very few situations where I cannot elect to do nothing for a while "until I've got a handle on this".

    I remember getting stuck up a rock face in the army, I'd looked own rather stupidly and become transfixed by fear. I've always been afraid of heights. I told myself that I was actually O.K. "just where I am" and I made myself feel secure in being just where I am. The sergeant started asking me if I was O.K. (from way down there) and I told him "yes, I just need a pause". And it turned out that was all I needed. That and to work out that I HAD to keep going eventually, so I may as well get it done now.... 

    I think If I woke up in the morning having panic attacks, I'd work out a strategy to give myself some "time to waste" first thing. I had a problem waking up fed up and depressed, so I set the clock early to give myself some time to skulk about without any external pressures on me to be nice. 

    I don't think that's as good as a reply from someone who knows that feeling exactly.

    I also have the advantage of doing yoga when I was about ten and playing with hypnosis when I was in my early teens.I can pretty much instruct my body to RELAX, when it needs to. It's been a handy skill.

  • I need people to stop giving me tablet and actually help me move on but I'm getting no practical help

  • Hi I Sperg, I don’t suppose you have any advice regarding waking up in the morning and feeling panic/having panic attacks? Every morning when I wake up this is happening to me and I could really do with some strategies to help with this. Any advice is welcome!

  • We are all doomed and we are all going to die, Steve!

    The question is what do we do in the bit in the middle?

    I used to have your perspective, but once you realise that no-one is coming to your rescue it is very liberating. You don't have to wait about for a start... (Then people sometimes actually start helping you. Life's odd like that)

    I'd be happy to talk about why you feel like that either here in the open or via the private messaging system.

    SOME problems have relatively quick solutions once you know the "trick", I'm always happy to try and help where my experience and advanced age gives me an advantage that others do not have. Some of the stuff I know took me fifty years to figure out!

  • If no one comes and rescues me I'm doomed, I'll just die

  • 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.