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Newly diagnosed

A.Sarah93

Hello All,

I am newly diagnosed at the age of 33. I feel like a fraud and no longer know who I am and what I stand for. It all started this year when I attended a dyslexia assessment. The assessor highlighted some traits of ADHD and autism that I showed and recommended I refer myself for an assessment. I did just that and have since been diagnosed with both. I thought I would be happy to finally have all of the answers, it turns out it is the complete opposite. I have lost all of my confidence, I am currently signed off work due to burnout. The thought of socialising in any form just fills me with anxiety to the point I feel people will just see my autism for what it is. 

I have no support network right now, the few people I do know do not understand me and how my brain works. If I share something, my comment is disregarded and compared to everyone being a little bit like that. So that leaves me irritated and not wanting to share my insights with anyone. I am struggling with the fear that when I do decide to disclose my diagnosis to others I will be stereotyped and classed as making it up and following the trends.

I went into my autism assessment thinking I wouldn't be diagnosed and was completely shocked when I was. I then started analysing my whole life and seeing every autistic trait for what it was in that moment. I spent days crying and trying to process it all. I am currently researching and trying to connect with others for a better understanding of myself, so I can build my confidence again. I am just finding life very confusing and challenging right now. I am hoping for better days ahead. 

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  • Hi  
    You've joined a good space. People here are incredibly supportive in general, and this is a good place to share—albeit perhaps a bit of a neurodivergent "silo" of relative sanity in my experience. To say there are a lot of us here who can empathise with the difficulties you're experiencing is perhaps a bit full of pathos, but nonetheless true. Sharing insights here will hopefully give you the confidence to know you won't be belittled or "gaslighted" by other people or environments that aren't quite as able to understand.
    The NAS has a variety of resources that you might like to explore when you're ready with respect to post-diagnosis and being autistic in general: https://www.autism.org.uk/advice-and-guidance.
    Personally, I found the experience really daunting—especially when viewed from the perspective of being in burnout. (sorry if the metaphors are a bit heavy - let me know if they're problematic please and I'll have another go at writing it if you want)  I felt a bit like someone in a burning building who had been given signposts to a DIY fire-fighting kit, where the nearest water was 40 feet underground. Because of that, I try to be nice to myself about not being the especially capable, high-performance person whose standards I used to hold myself to.
    It's tough, and I found immediate challenges just trying to manage day-to-day self-care, let alone the demands of work. Yet, the absolute best advice I can share that worked for me is realising that I had to do less in order to do more (at least until the burnout issues are under control). This was really, really difficult while my brain was screaming to resolve the situation by being active and getting things done. It requires acknowledging that things have always been relatively difficult, and realising that my current situation made them even more so.
    Then there's that whole mountain of things one has to come to terms with and digest. The best advice I have for that is: "How do you eat a 100-metre pizza?" Answer: "One bite at a time." Even if there is some sort of "set order" people imagine for coming to terms with things and "getting better," it really doesn't seem to be universal or follow any particular time frame.
    In respect of overall theories that helped me understand things, here are a few that helped me, in the order they occurred:  
      1. Imposter Syndrome
        You mentioned going into your assessment thinking you wouldn't be diagnosed and being completely shocked when you were. This is very common. When things are going well for me, I am inclined to not think of myself as autistic. Then, when I notice the problems I have living as a neurodivergent person in a broadly neurotypical society, I become very conscious of it.
        Here's what I tell myself now: The professional who diagnosed me knew the condition well and identified it using best-practice tools. As I understand it, if I wasn't disabled or significantly impacted by it, they couldn't have diagnosed me (which explains why I realise I'm autistic most when I'm experiencing problems). Maybe there are loads of fulfilled, happy autistic people whose social and environmental experiences are such that they never find autism disabling—they wouldn't get diagnosed anyway. In my opinion, it's a flawed diagnostic bias, but sadly that's the way it is for now. I've researched the science the diagnosis is based on, and it is solid. I keep telling myself to stop doubting (though I still keep researching!).
      2. The "Double Empathy" Model
        You mentioned the frustration of people saying "everyone is a little bit like that" or the "we're all a bit autistic" guff. I found the Double Empathy problem explains a lot of this, so I would suggest making this one of your early "pieces of the pizza" to look into. It does get a bit of a chore to keep doing all the work to bridge the gap for neurotypical people, but maybe when enough of them get the idea, it will become less necessary.
      3. Unmasking & Identity
        You mentioned no longer knowing who you are or what you stand for. I personally think of this as part of a "triple empathy" or identity problem, and it is the hardest to model. Part of this for me was confusing myself with the mask I was portraying. We learn to mask in order to gain social acceptance and make up for things that neurotypical people seem to do effortlessly. It is hard work, it's "glitchy," and eventually, you can lose sight of who you actually are.
        I have to acknowledge the sheer effort it takes to do this and be kind to myself about it. Start with easy tasks and safe situations. To be blunt, if I'm never going to be perfectly suited to neurotypical expectations, maybe I need to alter my standards and judge myself more gently. Just maybe an unmasked self is good enough for the people and things that really matter most. How many people go to their grave never really knowing themselves anyway? A late diagnosis is challenging as heck, but it can be a blessing in disguise.
      4. Monotropism
        Trying to process it all is a massive task. I found—and still find—the whole "pizza" of understanding autism and how it relates to me hard to get my head around because it has so many toppings and some of them burn until they've cooled enough to bite!. A single overarching theory that helps me explain it to myself and others is Monotropism: monotropism.org/.../
        I wanted to share that with you too (alongside navigating some of my own ADD traits).
    Best wishes!
Reply
  • Hi  
    You've joined a good space. People here are incredibly supportive in general, and this is a good place to share—albeit perhaps a bit of a neurodivergent "silo" of relative sanity in my experience. To say there are a lot of us here who can empathise with the difficulties you're experiencing is perhaps a bit full of pathos, but nonetheless true. Sharing insights here will hopefully give you the confidence to know you won't be belittled or "gaslighted" by other people or environments that aren't quite as able to understand.
    The NAS has a variety of resources that you might like to explore when you're ready with respect to post-diagnosis and being autistic in general: https://www.autism.org.uk/advice-and-guidance.
    Personally, I found the experience really daunting—especially when viewed from the perspective of being in burnout. (sorry if the metaphors are a bit heavy - let me know if they're problematic please and I'll have another go at writing it if you want)  I felt a bit like someone in a burning building who had been given signposts to a DIY fire-fighting kit, where the nearest water was 40 feet underground. Because of that, I try to be nice to myself about not being the especially capable, high-performance person whose standards I used to hold myself to.
    It's tough, and I found immediate challenges just trying to manage day-to-day self-care, let alone the demands of work. Yet, the absolute best advice I can share that worked for me is realising that I had to do less in order to do more (at least until the burnout issues are under control). This was really, really difficult while my brain was screaming to resolve the situation by being active and getting things done. It requires acknowledging that things have always been relatively difficult, and realising that my current situation made them even more so.
    Then there's that whole mountain of things one has to come to terms with and digest. The best advice I have for that is: "How do you eat a 100-metre pizza?" Answer: "One bite at a time." Even if there is some sort of "set order" people imagine for coming to terms with things and "getting better," it really doesn't seem to be universal or follow any particular time frame.
    In respect of overall theories that helped me understand things, here are a few that helped me, in the order they occurred:  
      1. Imposter Syndrome
        You mentioned going into your assessment thinking you wouldn't be diagnosed and being completely shocked when you were. This is very common. When things are going well for me, I am inclined to not think of myself as autistic. Then, when I notice the problems I have living as a neurodivergent person in a broadly neurotypical society, I become very conscious of it.
        Here's what I tell myself now: The professional who diagnosed me knew the condition well and identified it using best-practice tools. As I understand it, if I wasn't disabled or significantly impacted by it, they couldn't have diagnosed me (which explains why I realise I'm autistic most when I'm experiencing problems). Maybe there are loads of fulfilled, happy autistic people whose social and environmental experiences are such that they never find autism disabling—they wouldn't get diagnosed anyway. In my opinion, it's a flawed diagnostic bias, but sadly that's the way it is for now. I've researched the science the diagnosis is based on, and it is solid. I keep telling myself to stop doubting (though I still keep researching!).
      2. The "Double Empathy" Model
        You mentioned the frustration of people saying "everyone is a little bit like that" or the "we're all a bit autistic" guff. I found the Double Empathy problem explains a lot of this, so I would suggest making this one of your early "pieces of the pizza" to look into. It does get a bit of a chore to keep doing all the work to bridge the gap for neurotypical people, but maybe when enough of them get the idea, it will become less necessary.
      3. Unmasking & Identity
        You mentioned no longer knowing who you are or what you stand for. I personally think of this as part of a "triple empathy" or identity problem, and it is the hardest to model. Part of this for me was confusing myself with the mask I was portraying. We learn to mask in order to gain social acceptance and make up for things that neurotypical people seem to do effortlessly. It is hard work, it's "glitchy," and eventually, you can lose sight of who you actually are.
        I have to acknowledge the sheer effort it takes to do this and be kind to myself about it. Start with easy tasks and safe situations. To be blunt, if I'm never going to be perfectly suited to neurotypical expectations, maybe I need to alter my standards and judge myself more gently. Just maybe an unmasked self is good enough for the people and things that really matter most. How many people go to their grave never really knowing themselves anyway? A late diagnosis is challenging as heck, but it can be a blessing in disguise.
      4. Monotropism
        Trying to process it all is a massive task. I found—and still find—the whole "pizza" of understanding autism and how it relates to me hard to get my head around because it has so many toppings and some of them burn until they've cooled enough to bite!. A single overarching theory that helps me explain it to myself and others is Monotropism: monotropism.org/.../
        I wanted to share that with you too (alongside navigating some of my own ADD traits).
    Best wishes!
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