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Diagnosed a week ago…

Kim1025

Hey everyone

I’m new here and just received my official autism diagnosis last week. I'm a 51-year-old female, and while a big part of me feels incredibly relieved to finally have an answer, I’ve also found myself in a bit of a weird place over the last few days.

Instead of just celebrating, I've been feeling a bit down and quite blank. I think it’s hitting me just how much I've struggled my whole life without knowing why until now. It's a lot to process.

I’ve been offered three follow-up sessions with a psychiatrist, which I will take, but right now I’m just feeling a bit lost. For those of you who were diagnosed later in life, how did you navigate the first few weeks? What should I do now to help myself process all of this?

  • in reply to Rishma Mod

    Thank you for your reply Rishma. I will definitely take some time to read all the various resources. Thank you.

  • in reply to Stuart333

    Thank you so much for taking the time to write such a thoughtful and comforting reply. Your description of feeling 'unmoored' and going through a profound identity shift describes exactly how I feel right now. Hearing that it takes months and that it's ok to just be quiet and ease off the pressure has given me a huge sense of relief. Thank you for validating everything I'm feeling.

  • in reply to Literal_Joe

    Thank you for advice. I really dislike the 'think positive' phrase too, so your suggestion to just focus on not thinking negatively feels much more realistic and doable for me right now. Treating it as an explanation for my struggles is a really comforting way to look at it. Thank you.

  • Hello.

    I think it is a very personal thing. Your life path is specific to you. It also depends on the state you are in when you get your diagnosis. If you are burnt out, dysregulated and struggling to cope, it hits differently to if you are kind of ok.

    If you are on your own, it is different to if you have friends and family.if you have people to talk to, it is different to if you are alone.

    The challenge is the realisation you aren't quite who you thought you were. This can be a profound hit to your identity. It causes you to question everything. What is true? It takes months to come to terms with. Ultimately you are 95% who you think you are, but it takes time to realise this and to address the 5%, but the uncertainty is hard. You feel unmoored, lost, unsure, not quite grounded. The foundations of yourself are in doubt and not secure. It passes but takes lots of thinking, imo.

    Also, you are on possession of a new lens. You see your whole life in a different light. This can cause a huge sense of loss, and deep grief, amplified by the dysregulation of burn out. I didn't know what my feelings were, it took months to understand them. I didn't know why I was crying multiple times especially a day. I just wanted it to end.

    So what helps?

    Please be kind to yourself. You did the best you could. You managed, struggled, endured, hoped and tried. It may not have worked as best it could have, but you didn't have the knowledge. You did well, you made it this far. The system worked as intended, it kept you alive and going.

    Ease off on the self-imposed pressure. You don't need to pretend you aren't stressed, you don't need to ignore the knot in your stomach, you don't need to smile. It is ok to be quiet. It is ok to find things hard. It doesn't mean you need to hide under a rock, but just allow yourself to feel things and accept them.

    Know that this is going to be a lengthy process. It will be layers of an onion. You will change your mind a number of times. You can know things but not feel them till much later.

    Try to acknowledge everything you think. Put it into words, write it down. It gets it out and it forms your cloudy to noughts into real things you can look at and think about. 

    I watched YouTube videos to get various opinions. I also used AI. Knowledge helps to identify what is normal, what is autistic, what is quirky, etc. then you stop judging yourself and start living with yourself.

    It can be summed up in one thing, try to be calm.

    Finding how to do this is the challenge.

  • Hi Kim

    I welcomed my diagnosis (about 2 years ago), and found that it helped very much to explain many things. What you have to watch is the negative stigma from seeping in ... Think of it not as a diagnosis, but as an explanation, as who you are will not be changing. I hate the expression 'think positive', but actually, NOT thinking negatively about it should help

  • Hi Kim1025,

    Thank you for sharing this with our community, and welcome to the forum.

    Sorry to hear you've been feeling down since receiving your diagnosis. What you're feeling is completely understandable. While getting answers can bring a sense of relief, it can also bring up a lot of emotions about the struggles you have faced over the years.

    Our website has a diagnosis hub, this includes information, practical and multimedia resources to support autistic people and their families before during and after diagnosis.  

    You may want to visit the other resources on our website, we have advice and guidance on a wide range of information about autism, socialising and relationships, communication and education: https://www.autism.org.uk/advice-and-guidance 

    You can try searching on our Autism Services Directory for diagnostic services in your local area.  The Directory also includes listings for support and social groups for autistic people, their families and friends. 

    I hope you find this helpful.

    Rishma Mod