Confused

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 

Parents
  • 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.

    x

Reply
  • 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.

    x

Children
  • 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 :-)

  • Hi

    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 Worried

  • 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.