Published on 12, July, 2020
Hi,
I'm new here.
I was just wondering if anyone else has struggled with finding support after receiving their diagnosis as an adult? And if anyone has any helpful suggestions about seeking support or how to cope better?
The reason I was assessed and received a diagnosis is because I have a long history of struggling to cope. I used to think I had severe anxiety but I now realise that some of what I feel is anxiety and some of it is that I feel overwhelmed. This realisation is thanks to me now knowing I'm autistic and being able to research and understand myself better but I'm still finding it very hard to cope.
I was referred to see an NHS psychologist 18 months ago and 1 year ago I was told I'd be seen in 4 to 6 months. I appreciate the NHS are very busy but I'm still waiting and it's so difficult. I'm anxious about the uncertainty of these sessions (I've had some unfortunate past experiences where I've been misunderstood) but I'm also really aware that I've not been coping for a really long time and I need some help to learn to cope better and to understand my feelings better.
Due to the long wait, I was referred to a local charity that offer support but I'm also very anxious about that as new situations are very difficult for me and I have now been waiting 2 months since I first contacted them. I was offered an appointment with them but they didn't propose a date... They just said would I like an appointment... I replied saying I would but it's now been weeks since that email... Is this standard? How long is reasonable to wait for a reply? I worry I come across wrong with my need for specifics and my anxiety around waiting for the unknown, I've been called impatient before but it's not that I can't wait and I don't have a bad attitude while waiting (I'm actually very polite and apologetic), it's just incredibly uncomfortable anticipating what will happen while I wait because of the uncertainty of a new situation.
Sorry it probably sounds like I'm just moaning but I'm just really struggling with feeling hopeless about my future as I can't seem to make any real progress in my life. I worry that I will soon hit a big meltdown and really malfunction again and that's always so difficult to recover from. I'm terrified that one day I will "lose my mind" because the anxiety, fears and feeling overwhelmed will just become too much.
I've never managed to work for longer than 8 months without completely burning out and ending up very physically and physiologically unwell. I live independently but struggle with terrible anxiety around dealing with my landlord. I also have obsessive compulsive traits which interfere with my functioning. I'm always exhausted which makes me feel lazy as I'm barely achieving any of the many things an adult is expected to in a day.
Does anyone have any suggestions about seeking support or coping? I'm discharged from the diagnostic service but the primary clinician involved in my diagnostic assessment said I could contact her if there was anything she could help with, is it appropriate to contact her and explain that I still haven't had psychology sessions she was expecting and that I'm having trouble making progress with the charity? I don't know what is appropriate contact? I'm discharged so I feel I am no longer her responsibility. I also don't think there will be much she can actually do as she's already pushed so much to make sure I was assessed and that I will be seen by a psychologist.
Thanks in advance, any suggestions would be much appreciated.
Hello and welcome to the community first of all.
Your post is a common theme among those that have received a diagnosis. I myself have been refused treatment as a result of my diagnosis, despite being treated by these departments previously.
I hope that one day that the negligence autistic people have faced as a result of having a diagnosis will be highlighted and scrutinized so that better support and action can be put in place.
Getting a diagnosis is overwhelming in itself and most people seem to struggle for the first year or so. Things do get easier but it does take time to adapt, which I know is hard as we tend to be overly hard on ourselves.
I am very good at masking in most cases, so people will see me and think I am fine, but the reality is far from it. Society has high expectations of you when you are an adult. We are expected to be independent, hold down good jobs and thrive - struggling in any of these areas can feel like failure, but the reality is we have very different challenges to the majority of people in society. On top of all the daily struggles that most adults face, we have additional hurdles to tackle and sometimes it can be all too much.
If like me you have your ups and downs, I would use the time when you are managing better to document what sort of help you would need should you find yourself struggling. When I am really struggling, I struggle to communicate my needs or get overwhelmed very easily, so when you are at your most vulnerable it can be much harder to try and get the help you need.
I don't mean for this to sound very negative, but I have found that I needed to adjust my expectations when asking for help. I am often criticised for not asking for help when I need it, however, when I do I rarely get it as people don't know what to do or there is so much red tape that nothing ever happens. For this reason it is important to reassure yourself that despite how awful the situation may be, it will get better one way or another.
Despite this I would still think about what would make your life easier - even a little bit easier. Do you have friends or family that could be structured into your support plan?
If in spite of the above you feel it really is too much to deal with then although I don't actively promote taking medication such as anti-depressants or anti-anxiety tablets, it can work for some people. I have had bad experiences with medication in the past, however, I am experiencing good results with Mirtazapine which helps with my anxiety.
It has taken me years to master the art of living as an independent adult and even now I struggle, get burnt out and overwhelmed.
Thank you so much for replying and helping me to feel like I'm not alone in struggling to cope and that it is perhaps "expected" or "understandable". I was only diagnosed in November 2018 so I guess it's still early days for me.
If it wasn't for my "special interest", I actually have no idea how I would cope! It's the thing that picks me up and keeps me going, even if "going" isn't that impressive to the outside world.
Thank you for your suggestions. I'm feeling better after some "special interest" time today and tonight. I'm really lucky to have so many opportunities to pursue my interest and I need to remember that.
I do need to look at making a plan for when I'm not coping, I just don't know who is the right person. My parents call everyday but they don't really understand ASD. I feel the GPs are nice but they have no idea how to help me. Asking if I've tried going for a walk is hardly helpful when I've previously had a walking compulsion which really affected my physical and mental health. I haven't told anyone except one "friend" who I now know isn't able to be helpful and one person I've met who is also autistic but I know she has her own struggles so I can't depend on her even though she has offered to be supportive.
I'm struggling with not wanting to tell anyone else because I'm worried about how they will respond. I finally have friends, well one real friend (not the "friend" I told) and many accepting acquaintances. I'm not ashamed of my diagnosis but I feel like we don't live in the most accepting and tolerant society. I worry that all my hard work might be undone if I were to explain that I'm autistic and actually masking a lot. I think people would struggle to understand and feel like I've misled them.
Thank you for the suggestions and reassurance.