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

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.

Parents
  • 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. 

Reply
  • 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. 

Children
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