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Recently diagnosed and struggling

AlpineS

I'm new here. I was diagnosed autistic & ADHD earlier this year. It’s something I’ve suspected for years but it took a long time to navigate actually being assessed. 

I really thought the diagnosis would bring relief, clarity and validation. I think I expected to feel seen but instead I just feel lost. I guess I’m still processing it all. It's a complete shift in how I see myself and my past and in how I'm going to live my future and that's a lot to deal with. It’s brought up a lot of grief.

I wasn't offered any meaningful support afterwards so i suppose I just feel very alone in navigating it all. The people in my life don’t seem to understand how life changing this diagnosis is for me so I can't really talk to them much about it.  And when I reached out to my doctor I was basically told to either pay for private therapy or try making friends with other autistic people. So I don't really feel like I've had any guidance or resources. I've just been left to somehow figure it out on my own. 

I’m struggling with loneliness. I don’t know how to make friends in a way that feels real and sustainable. Some days I can barely get out of bed. I can’t work right now. I feel overwhelmed by everything. I'm anxious that I'll never find the support or stability I need to build a life where I can function and connect with others.

I'm nearing 30 now and I see all my peers settling into careers and having solid supportive friendship circles. I thought by this age I’d have it a little more figured out but instead I feel stuck and like everyone is moving too fast for me to keep up. 

I guess that’s why I’m here. I’m looking for reassurance that I’m not the only one feeling this way. I want to find a sense of community and somewhere to be honest about this journey as I try to unmask and figure out how to exist in the world as I am.

I know this is a bit rambly, but if anyone has any advice or can resonate in any way it'd be great to hear from you. 

Parents

  • Congratulations on your diagnoses and welcome to the community.

    I can certainly relate to how you're feeling. Following a diagnosis, it can be common for us - especially as late-diagnosed adults - to experience a lot of emotional dysregulation. Besides perhaps feeling some relief about getting our diagnosis / an explanation for our past difficulties, this can also include working through a phase where we experience confusion, uncertainty, and/or (backward-focused) anger, frustration, grieving and more. So please don't worry - it's normal! 

    For me, as for many others here, my diagnosis turned out to be much more of the start of a new journey, rather than a conclusion full of instant solutions for my various ASD-related difficulties.

    The NAS has a great set of articles focused on "after diagnosis", including one covering how you might feel during the subsequent days / weeks / months. You might find them of interest and/or helpful:

    NAS - How you might feel after a diagnosis

    NAS - Other advice covering post-diagnosis including:

    • Talking about and disclosing your autism diagnosis
    • Emotional support for family members after a diagnosis
    • Formal support following an autism diagnosis
    • What can I do if formal support is not offered or is not enough

    I'd suggest asking your GP to try again, and this time to do better! :)  

    Therapy (or counselling) is often recommended after a diagnosis for your GP to arrange. If you prefer, you should be also able to self refer for talking therapy on the NHS, rather than needing to arrange anything privately. Before arranging it, you might find it helpful to borrow or buy this book, which includes discussion of various types of therapy and counselling, together with advice on choosing the right therapist or counsellor - all from an autistic person's viewpoint. Several of us here have found it very helpful:

    The Autistic Survival Guide to Therapy

    In addition to hopefully finding this community helpful, you might also like to ask your GP for a referral to a social prescriber. Their role is to work with you, potentially over several sessions, to develop a personalised care and support plan that meets your practical, social and emotional needs. This is available throughout the UK and could include helping you to find local support groups, for example. The article below explains more:

    NHS England - Social prescribing

    These may also be of some help:

    NAS - Loneliness

    NAS - Making friends

    You might be able to find some local groups via the the NAS's directory and/or through a local NAS branch:

    NAS - Autism Services Directory

    NAS - Branches

    You might also be able to find some local groups by searching on Facebook and/or Google, including "autism" and your home area in the search phrase.

Reply

  • Congratulations on your diagnoses and welcome to the community.

    I can certainly relate to how you're feeling. Following a diagnosis, it can be common for us - especially as late-diagnosed adults - to experience a lot of emotional dysregulation. Besides perhaps feeling some relief about getting our diagnosis / an explanation for our past difficulties, this can also include working through a phase where we experience confusion, uncertainty, and/or (backward-focused) anger, frustration, grieving and more. So please don't worry - it's normal! 

    For me, as for many others here, my diagnosis turned out to be much more of the start of a new journey, rather than a conclusion full of instant solutions for my various ASD-related difficulties.

    The NAS has a great set of articles focused on "after diagnosis", including one covering how you might feel during the subsequent days / weeks / months. You might find them of interest and/or helpful:

    NAS - How you might feel after a diagnosis

    NAS - Other advice covering post-diagnosis including:

    • Talking about and disclosing your autism diagnosis
    • Emotional support for family members after a diagnosis
    • Formal support following an autism diagnosis
    • What can I do if formal support is not offered or is not enough

    I'd suggest asking your GP to try again, and this time to do better! :)  

    Therapy (or counselling) is often recommended after a diagnosis for your GP to arrange. If you prefer, you should be also able to self refer for talking therapy on the NHS, rather than needing to arrange anything privately. Before arranging it, you might find it helpful to borrow or buy this book, which includes discussion of various types of therapy and counselling, together with advice on choosing the right therapist or counsellor - all from an autistic person's viewpoint. Several of us here have found it very helpful:

    The Autistic Survival Guide to Therapy

    In addition to hopefully finding this community helpful, you might also like to ask your GP for a referral to a social prescriber. Their role is to work with you, potentially over several sessions, to develop a personalised care and support plan that meets your practical, social and emotional needs. This is available throughout the UK and could include helping you to find local support groups, for example. The article below explains more:

    NHS England - Social prescribing

    These may also be of some help:

    NAS - Loneliness

    NAS - Making friends

    You might be able to find some local groups via the the NAS's directory and/or through a local NAS branch:

    NAS - Autism Services Directory

    NAS - Branches

    You might also be able to find some local groups by searching on Facebook and/or Google, including "autism" and your home area in the search phrase.

Children
  • in reply to Bunny

    Thank you, there are some helpful resources here. And I like the idea of my diagnoses being the start of a new journey. I think it's just a journey that will take a lot of time and patience with myself.

    I think at least for now I've written off reaching out to my GP for any kind of support but I may try the book and revisit it as an option in the future if I can bring myself to do it