• Replies 5 replies
  • Subscribers 9 subscribers
  • Views 1984 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Waiting on a Diagnosis and Don’t Know What to Do in the Meantime

aitrooper

Hi, 

I’m a 25 year old female currently waiting on an appointment to be assessed for autism (I’m on the waiting list but they said it would be 2 1/2 years). Autism was brought to my attention by a friend who has not long been diagnosed herself. To be perfectly honest I don’t know what to do and feel incredibly isolated. Whatever my issues are (be they due to autism, adhd (my assessment is next week), or just depression) it’s making it very difficult to see any point in going on. I have about two friends (my social issues are debilitating), am unemployed (never had a job) and barely leave the house. I can barely take care of myself and have executive functioning difficulties. I so badly want to be normal and like everyone else but I don’t know how to do it. I feel like when I was being made a fundamental piece was missing and I’m being forced to navigate a world not made for me and that I won’t ever fully understand. How can I better cope while waiting for a diagnosis? I so badly just want to know what’s wrong with me and the not knowing is driving me mad. I cannot stop thinking about it. I go through constant phases of ‘this is definitely me’ to ‘what if it’s all in my head and I’m not autistic and I’m taking the place of someone who genuinely needs the assessment appointment?’. Even if I got a diagnosis I’ll be at least 27 by then and that’s so much of my life wasted. I apologise for the long rant. I’m just looking for some advice. Is there anything I can do to make things better in the meantime? Would getting a diagnosis (if it is autism that I have) actually help me? I can’t face living the rest of my life like this.

  • im waiting too.  told it would be within 10 months, got to the end of 10 months and now another 12 months have been added on, i dont think i will ever get my assessment

  • Hi  it took me over 3 years to get my diagnosis and I am 57 years old. I struggled most of my life. Having limited friends is normal but you are not alone. Maybe see your doctor regarding anxiety and going out. 

  • I too am awaiting an assessment and find myself checking my emails and the service website several times a day in the hope an answer will magically appear! It's a difficult period of being in limbo that I don't think is easily understood unless you have been through it.

    I have decided to continue through this waiting period as though I am confirmed to be autistic. Meaning I am giving myself all the compassion, adjustments and support that I need, and taking my own concerns seriously. Also engaging with support services and autistic communities (like this). Just because I have not been formally diagnosed does not mean I don't need and shouldn't access support.

    I don't know what your situation is exactly but could you access therapy or counselling? Or start doing what we autists are so good at and research the heck out of your options.

    It's really hard just waiting, but you don't always need someone to tell you you're autistic to take the first step forward and get help with your specific struggles. Good luck!

  • I'm sorry you feel like this. I also felt like that before my diagnosis, and I also feel that I'm missing an important piece of myself (good image, thanks).

    I think, if you're this anxious about your assessment, then you DO "genuinely need the assessment appointment." You need an answer and it doesn't matter which way it goes. An assessment that rules out is just as useful as one that rules in.

    As for whether a diagnosis would help, it doesn't really open the door to much in the way of practical support (benefits, therapies), but just knowing that you're different helps a lot of people feel better about themselves and their place in the world (this is what I felt, even though I still struggle with that self-knowledge sometimes). It's a lot easier to forgive yourself if you know there's a reason why you can't do things.

    In terms of practical advice, do you have any hobbies? Any kind of practical goal you can give yourself in the meantime to distract yourself?

  • I would read loads of information on Autism, and watch YouTube videos. It will distract you while filling in the void. 
    I wouldn’t say you’re not normal. You’re just not neurotypical, and the sooner you take that on board, the better. You won’t ever be like them. And eventually you won’t use up so much if your energy pretending to be.

    Life wasted at 27? I was diagnosed this year and I’m 50 May! I don’t think my life has been wasted. I am sorry for the little girl that was missed all those years ago, but since finding out I’m autistic things are only getting better (in my head anyway!)


    In your case, a diagnosis will give you something definite. Then what? How do you envisage things will turn around? Because diagnosis or not, you will still be autistic afterwards. You will still have problems. It’s just a case of learning new ways to help yourself, taking pressure off yourself, and being you, and seeing if any therapies can help you achieve that. Yes it takes time, but it’s doable.