Newly diagnosed 29 y/o woman, struggling to accept

Hi everyone, I’m new here and hoping for some guidance.

I was diagnosed with autism on Tuesday through the Right to Choose pathway with Clinical Partners. The assessments themselves felt thorough, but the actual diagnosis was delivered in a very blunt five‑minute phone call. I asked a few follow‑up questions but the responses were short, and I was told my report will take 2–4 weeks to reach my GP. It’s left me feeling like I’ve been handed this huge piece of news with no support or direction.

Even though I suspected autism for a while, the diagnosis has hit me in a way I didn’t expect. I keep finding myself wondering if I somehow said the wrong things in the assessments, or if they misinterpreted me. It feels strange to have this label that’s supposedly been part of me my whole life, yet right now it doesn’t feel like it “fits” or belongs to me. I can’t seem to sit with it — I feel numb, confused, shut down, and unsure how to cope or what to do next.

If anyone is willing to share how you processed your diagnosis, what helped you in the early days, or anything you wish you’d known at the start, I’d really appreciate it.

Parents
  • I was burnout at the time e so was struggling to think completely straight. Hopefully you are in a better place. I have spent a lot of time analysing myself and all memories. A few things that might help:

    1. You will think you have something, you are now diagnosed after all. This causes identity problems. It is hard but it will settle. You feel the right has been pulled out from under you. If you didn't see this, do you know yourself at all.

    2. You will wonder if it is real. Did you exaggerate, did they make a mistake? Yes things are bit tough, but you can't really be different. You don't feel autistic. But of course no one feels autistic, you are just you, you have always been you. It is imposter syndrome. You can do stuff, if you really have to. And that's the point, you can do stuff, just it takes more effort.

    3. You feel dispirited, because all that effort to fit in and you can't ever be normal. But that is the wrong framing. You are not defective, just different. But different has consequences. 

    4. You now have permission to be kinder to yourself. Stop pushing so hard. Make some space. You don't have to prove stuff anymore. Lower your shoulders, sit up straight and breathe.

    5. You will want to read up as much as you can. You won't get anyone to hold your hand, so this is a personal knowledge gaining thing. I went for it. Maybe a thousand hours plus of reading and discussions in the last 9 months. 

    6. You will want to re-examine your past, why some things are hard, where you thoughts and ideas come from, what you like, don't like, what you want, etc. Depending on how your mind works, and if you have trauma, you may not just think about the past but relive it. This is tough and you may need some help or counselling.

    7. You may find on looking at accommodations you have already self-discovered some and do them.

    8. You may think about things you have misunderstood or messed up and feel grief or loss. I felt a huge sense of loss upon diagnosis, it was the main feeling by that dominated all else 

    9. You will spend months going around then arrive not far off where you now are, but calmer, more assured and knowing yourself better. But to get there you have to take things on, possibly uncomfortable things. But don't just assume all the blame. Misunderstandings are 2-way things. 

    10. Be aware of cognitive distortions, like black and white thinking and catastrophising. 

    11. You may have issues knowing something and feeling something. It takes me ages to feel something is true rather than just know it. This is basically because your nervous system does not update at the same speed as your brain. It runs you emotions and it takes time for limbic system to catch up.

    12. You can't think your way out of it. I've tried, a lot. Most of the feelings for me, anxiety, knit in chest/stomach, sleep issues, etc.are threat responses. This is all nervous system related. You can't think them away. They run underneath thinking. You update them by being calm. Then going things when you have capacity and it learning that no bad things happened.

    13. Eat healthily ,drink and keep hydrated and rest. Avoid caffeine, nicotine and alcohol , or cut down, for a while. Try to be calm.

    14. You hold the answer to you. Other people can't fill gaps for you. They can give you space, give moral support while you do things, praise, but you have to do things. Only you can know you.

    15. It is ok to ask for help. This one may not apply, it depends on how your childhood was.

    16. The objective of all of this is to allow you to know what you want, to be in a position to do it, to move forwards, but to do it all without burn out. You do not want that. Work with your nervous system, not against it. It is there to provide information, not control you. But it needs a little respect.

    17. No two people are the same. If others have traits you don't, that does not invalidate your experience.

    18. You will think ASD explains everything about your past. But eventually you'll realise:

    • Some things were ASD.
    • Some things were personality.
    • Some were childhood.
    • Some were burnout.
    • Some were relationship dynamics.
    • Some were just being human.

    None of this matters though really. I could read whatever I liked from other people. While it helped me not feel alone, I still needed to know it for myself. I have used chatGPT as a virtual journal, recording what I was thinking. I has helped me spot patterns and behaviours. But I am alone. I also watch, log and analyse myself continuously. 

    That'll do for now.

Reply
  • I was burnout at the time e so was struggling to think completely straight. Hopefully you are in a better place. I have spent a lot of time analysing myself and all memories. A few things that might help:

    1. You will think you have something, you are now diagnosed after all. This causes identity problems. It is hard but it will settle. You feel the right has been pulled out from under you. If you didn't see this, do you know yourself at all.

    2. You will wonder if it is real. Did you exaggerate, did they make a mistake? Yes things are bit tough, but you can't really be different. You don't feel autistic. But of course no one feels autistic, you are just you, you have always been you. It is imposter syndrome. You can do stuff, if you really have to. And that's the point, you can do stuff, just it takes more effort.

    3. You feel dispirited, because all that effort to fit in and you can't ever be normal. But that is the wrong framing. You are not defective, just different. But different has consequences. 

    4. You now have permission to be kinder to yourself. Stop pushing so hard. Make some space. You don't have to prove stuff anymore. Lower your shoulders, sit up straight and breathe.

    5. You will want to read up as much as you can. You won't get anyone to hold your hand, so this is a personal knowledge gaining thing. I went for it. Maybe a thousand hours plus of reading and discussions in the last 9 months. 

    6. You will want to re-examine your past, why some things are hard, where you thoughts and ideas come from, what you like, don't like, what you want, etc. Depending on how your mind works, and if you have trauma, you may not just think about the past but relive it. This is tough and you may need some help or counselling.

    7. You may find on looking at accommodations you have already self-discovered some and do them.

    8. You may think about things you have misunderstood or messed up and feel grief or loss. I felt a huge sense of loss upon diagnosis, it was the main feeling by that dominated all else 

    9. You will spend months going around then arrive not far off where you now are, but calmer, more assured and knowing yourself better. But to get there you have to take things on, possibly uncomfortable things. But don't just assume all the blame. Misunderstandings are 2-way things. 

    10. Be aware of cognitive distortions, like black and white thinking and catastrophising. 

    11. You may have issues knowing something and feeling something. It takes me ages to feel something is true rather than just know it. This is basically because your nervous system does not update at the same speed as your brain. It runs you emotions and it takes time for limbic system to catch up.

    12. You can't think your way out of it. I've tried, a lot. Most of the feelings for me, anxiety, knit in chest/stomach, sleep issues, etc.are threat responses. This is all nervous system related. You can't think them away. They run underneath thinking. You update them by being calm. Then going things when you have capacity and it learning that no bad things happened.

    13. Eat healthily ,drink and keep hydrated and rest. Avoid caffeine, nicotine and alcohol , or cut down, for a while. Try to be calm.

    14. You hold the answer to you. Other people can't fill gaps for you. They can give you space, give moral support while you do things, praise, but you have to do things. Only you can know you.

    15. It is ok to ask for help. This one may not apply, it depends on how your childhood was.

    16. The objective of all of this is to allow you to know what you want, to be in a position to do it, to move forwards, but to do it all without burn out. You do not want that. Work with your nervous system, not against it. It is there to provide information, not control you. But it needs a little respect.

    17. No two people are the same. If others have traits you don't, that does not invalidate your experience.

    18. You will think ASD explains everything about your past. But eventually you'll realise:

    • Some things were ASD.
    • Some things were personality.
    • Some were childhood.
    • Some were burnout.
    • Some were relationship dynamics.
    • Some were just being human.

    None of this matters though really. I could read whatever I liked from other people. While it helped me not feel alone, I still needed to know it for myself. I have used chatGPT as a virtual journal, recording what I was thinking. I has helped me spot patterns and behaviours. But I am alone. I also watch, log and analyse myself continuously. 

    That'll do for now.

Children
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