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.
I'm sorry that you are feeling so lost and are struggling to get support. I can relate to what you are describing including this feeling of being abandoned without help. I am currently struggling a lot with mental health, burn-out and food/eating- I think you have worded it perfectly, it is a "struggle with existing". I am only waiting to be assessed though, but I suspect I am autistic.
I have a lot of issues around eating/food (which just do not seem to conform to the typical eating disorder issues. I've actually been able to understand some of the issues better since I realised I am probably autistic). Since I've not really figured out the food/eating issues yet, I'm not sure I'm the best person to give advice, but if you want to give more detail about what you are struggling with, I'm happy to listen and see if I can relate to it and if there is possibly anything that I have tried that helped me cope with it. If you are struggling with ARFID type issues, there is actually a self-help book that has recently come out which I ordered and which looks good (though I haven't properly worked through it yet)? If you want I can give you the details. I have also worked with a dietitian for a while and she is in fact the one that realised I might be autistic.
I also agree with other's comments that it is a good idea to try and get a different GP.
I have also found that this community is actually one of the best sources of information, resources and advice. So whilst you are waiting to get some more support from GP etc. hopefully the community here can give some comfort and advice.
I'm sorry that I don't have any more useful advice. I hope you manage to access some more support !!
Yes - ‘struggle with existing’ - well described. My son sometimes says “I don’t think I was made for this world” - and I relate to that too. I’m exhausted.