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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 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!

Reply

  • 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!

Children
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