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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.

Parents

  • 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?

Reply

  • 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?

Children
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