Wasn’t sure if to write here or not but I am hoping for some advice.
Whilst I was going through the diagnosis process i kept coming on here and have read over and over again how getting diagnosed has helped in some way and how others were worried they wouldn’t get diagnosed due to NHS not diagnosing in the area. I guess I am one of the lucky ones as I was diagnosed very quickly and this is why I feel so bad.
There seems to be so many people looking for a diagnosis and I have one and don’t serm to be happy. I have been trying to look at the positives but I feel very negative about the diagnosis and am struggling to cope. I am wanting to know if anybody else’s does or has felt the same.
i am sorry if my complaining is frustrating for those who are wanting a diagnosis I do realise I have been lucky
Sorry to hear you're struggling to cope. I think getting diagnosed is a pretty big event and stirs up loads of emotions, good and bad. Try not to feel guilty about how you're feeling, it's your experience - no-one else's! You sound like an empathetic person in considering other people who struggle to get a diagnosis.
Although I was mostly glad to get my diagnosis (and finally get an explanation for years of struggling), I did start to feel sad after a few months. It hit me that this condition would be with me all my life, and I was sad that no-one had worked out that I had it sooner.
BUT after another few months I started to feel a lot better and more at peace with myself. I guess what I'm trying to say is that how you feel about your diagnosis is an ongoing process. Hope things get better for you.
Thank you for your reply
yeah I do worry about others, I believe if ur autistic we are not supposed to have empathy but I worry about others constantly so I guess that’s not always the case.
i always felt different but never suspected autism, it came out of the blue from the gp after I got Ill last year and then the assessment came through all within 12 months and it was a shock.
i also feel angry my parents didn’t do anything when I was a child and keep thinking how different things could have been. I’m not sure what’s next and feel everything is up in the air, hopefully things will change.
Hi Xiv, sorry to hear that you are having a hard time with the diagnosis. Firstly, I agree with what PokemonGoAddict has said, and I think you are a nice and considerate person to think about others who are struggling to get a diagnosis. Regarding your feelings after getting a diagnosis, I find it very understandable. In fact, it's something I have considered for years before I finally made the decision to ask for an assessment. There are many reasons why it's understandably difficult: it's a really big 'change' suddenly having it, it's a confirmation of being different and a confirmation of difficulties in e.g. social communication and sensory issues, and being diagnosed as an adult one would naturally feel sad/angry and wonder if things would have been different if it was noticed earlier. I can understand these feelings. I think what you are feeling makes a lot of sense. Do you have a counsellor to talk to? Someone who specialises in ASD in adults? Perhaps they can help you adjust to the new diagnosis, and point out the positive things about it. Does the diagnosis clinic offer any follow-up consultations? I think it'll take time to get used to a 'new' diagnosis, and I'm sure there will be lots of people on this forum who can understand and support you as well. Best wishes.
thank you for your kind words
Since diagnosis 5 weeks ago I’ve heard nothing and my GP is a waste of space and couldn’t understand why I was asking what happens next. Maybe she is right when u get diagnosed with say a chest infection you get pills go home and that’s it, I was probably expecting too much.
it has really got me down and the more I have worried about why I’m down the worse I have got. There is only 1 family member that knows about my diagnosis and I feel too nervous to tell anybody else.
im hoping things will get better as I don’t think I could get any lower
Hi xiv... I just signed up to reply to your post.
I was diagnosed just over 6 months ago, mid forties.
I feel exactly the same. I have been through some serious times - like nursing my father and mother during their last few days at home, to their early deaths. Thats one of the hardest things you can do in life but would you believe - being told "You're autistic" was the hardest thing I have ever been through - still is.
At least two old friends from 30 years ago have attacked me emotionally and verbally. Nice :( One was a couple of weeks ago just before christmas.
The problem is, and has been since I was a child - I can see the universal engine room, the inner workings of the universe. Just like many historic famous scientists have and do see. Indeed - I now realsie that a huge amount of us do see whats really happening here. Like REALLY happening, where, why and how.
So - I cant talk with anyone. I just see these normal people with zero understanding of anything at all. BUT the catch is - they all think I am insane.
I woud never be normal if I had the option. Why would I shrink my brain to the size of an gnat's just so I can fit in with nonsense social rank...?
I think what you say is correct. It's not just about autism though, it's about getting diagnosed with anything because sometimes it can be extremely challenging for both ourselves and the professionals to understand what's going on, then it can be challenging in getting a diagnosis when the professionals, for whatever reason, don't try to properly find out what's going on in order to get some sort of diagnosis. For some people they may never get a diagnosis for conditions, which could require extra help and support yet without a diagnosis they don't get any. The system does have a luck element to it and we are lucky for having received a diagnosis while others don't.
If I'm going to be completely honest then I'm not happy, but I don't see that as a result of my diagnosis. I wasn't happy before my diagnosis and I wasn't happy after my diagnosis. Before my diagnosis I had already come to terms with being different and accepting myself for it, so the diagnosis was just a label to attach to those differences. It didn't actually change the complexities and challenges of life, of others and the world around me. I struggle with those things and in trying to cope with living life but I accept that my power and control over certain things is limited so I just try to live my life as best as I can. In time, such things may change for the better but all I can do is wait and see.
All I can offer is to say that all we can do is try our best to live our lives with whatever challenges we may come across along the way.
Some GPs can be really hopeless, I've had to deal with some shocking ones over the past few years. It's the last thing you need when you're feeling down and needing help! But there are some lovely doctors out there; do you think you could try seeing someone different? Maybe a friend or family member could help if it feels like too much to deal with by yourself?
Like you, I didn't get any follow-up support after my diagnosis. I was really lucky in that I found a counselling service with Specialist Autism Services: http://www.specialistautismservices.org/york/
I saw a counsellor there for 18months and she helped me understand my autism better, what things could help me stay well, and how to talk about my diagnosis with friends and family. The service is based in Yorkshire but maybe there is something similar near to you? (if you're not in Yorkshire!)
Everyone on this forum is always here if you want to talk about anything :-)
I have felt like killing myself, several times, after getting my diagnosis and felt mortified, humiliated and utterly distraught at many more times.
These occasions usually followed a huge enlightening moment. For example, I remember being delighted that I could view my behaviour in the way many others (nt’s) viewed it. Then I was not only mortified and humiliated but I became suicidal as I realised, that just because I was now aware of it, it doesn’t mean I can do anything about it. And what would it mean if I could? Would it mean I never speak again?
It’s been a very up and down journey and I’ve had to dig deep and anchor in and the diagnosis enabled me to do that. Pre diagnosis I at best didn’t have a clue what I was doing and at worse, I was driving people away and hurting myself in the process. It was very confusing and I had no anchor point. I didn’t even think I was a human, because I had never met anyone else like me.
But slowly, but surely, with a tremendous amount of support and education from the people on this site and the wider site, reading books, watching YouTube videos, getting support workers and putting my trust in them, the people at my autism group and giving myself the time and space to come to terms with it, I have, but not only have I done that, but I have also come to accept it and love myself because of it or in spite of it.
It’s been a little over 12 months so far and I think I’m at a turning point but I’m also taking the next 12 months (or as long as is needed) to work out how I fit into the world, now I know who I am. And my first quest is to work on my health and fitness and building relationships at my autism group and finding things to do that I enjoy and find fun. I’ve got a lot to learn but I will make sure I take my time and enjoy every step of the way.
I honestly never expected the roller coaster journey post diagnosis, I didn’t see it coming at all, but I can see now that it’s been a necessary cleansing and learning process as well as one of discovery and falling in love, with me :)
Pre diagnosis I at best didn’t have a clue what I was doing and at worse, I was driving people away and hurting myself in the process. It was very confusing and I had no anchor point. I didn’t even think I was a human, because I had never met anyone else like me.
Wow. That is so similar to how I felt pre-diagnosis. Thank you for expressing it so eloquently!
I'm happy you've managed to take so many positives out of your journey. I hope the future holds lots of good things for you
I was diagnosed at a very young age (I think I was about 5 years old?) so I don't even remember getting my diagnosis and obviously I wouldn't remember what it feels like to not have the diagnosis.
However I can completely understand what you mean. If I had only just discovered my diagnosis right now (I'm 25 btw) I think I would be in complete shock and would really struggle to come to terms with it.
Throughout most of my life I tried my hardest to hide my Aspergers from everyone, I was scared people would laugh at me and think I was a freak. I just wanted to be like everyone else. I would even deny I had it to everyone including doctors or counsellors who would try and bring it up! I hated being so different, I hated being me so much I wanted to die. I was ashamed of myself.
Over the past couple of years I've finally accepted the fact I have Aspergers, tbh I'm completely okay with it now. All of my behaviour, thought patterns, personality traits, etc all make sense to me.
I honestly believe it just takes some time.