The power of diagnosis as an adult.

I’ve been doing a lot of reflection lately and something I thought about was “how life would have been different had I known about my Autism as a child”. 

I was a little angry at the world about this – that not one person picked it up! And I let this thought anger and distress me. I let myself feel sorry for myself and all of the “lost generation”. About all the misunderstandings and struggles we all faced at various levels with no explanation.

I can’t conclude whether this is a bad thing or good thing for anyone else but myself. So my personal view on the matter is that although I felt this sadness and anger about it – I am glad I didn’t know. This may go against the grain of the majority, but allow me to explain..

It’s one thing to “feel” different to others, it’s a whole other thing to KNOW that you are. Sure, a few accommodations would have come in handy but I would rather have struggled in silence like I did with no explanation than to be singled out and minimised because of this “difference” by others. For them to use it as an excuse for my behaviour or misunderstandings. 

I’m glad I was able to observe, absorb and adapt to the world around me as I did. Although I have developed maladaptive coping techniques from past experience this has also allowed me to be an “outsider insider” to the neurotypical life. If I had known I wasn’t neurotypical, or if others hadn’t, I don’t believe I would have had this opportunity. I believe I would have isolated myself, or been isolated because of my difference.

Difference” is a way of segregating people. The history books show that. Being white I have privilege, being female means I have a little less than white men, being a disabled white female means I have even less, but still more than others I have no doubt about that (I’m being honest here, doesn’t matter what way it’s spun, in my opinion white = privilege). It was hard enough getting “heard” throughout my life, there was always a “just” – “just” a kid, “just” a girl, “just” a teenager, “just” a stupid female. I can only imagine how hurtful being minimised to “just” Autistic would have been especially when judgment of my opinions and decisions based on my age and sex were often considered “wrong” anyway. 

So I am glad I have this knowledge as an adult. It’s mine to disclose at my own discretion. It’s my “ace up my sleeve”; it’s my power. I “don’t look Autistic” and have passed for years. I know now why I struggle with some things – it’s not because I’m “stupid” at all. As a matter of fact I think that’s where Autistic adult power lies – in being underestimated. People focusing on our challenges and wondering “why?” yet missing our strengths. Our power is being able to offer an explanation, to say, “I am Autistic, I process things a little differently so can you explain *it* in this *way* for me please?”. It’s the power to look back and make sense of our past, to forgive ourselves for not knowing then what we know about ourselves now. It’s the power of self-discovery, to get in touch with ourselves, to learn about ourselves, to figure out our wants and needs, to find our limits and not push them because it’s a neurotypical expectation to do so. It’s our power to say “NO” without explanation to others because we have an explanation for ourselves. 

It’s our power NOW, as adults, to chose what’s right for us – as a kid that power would have been in others’ hands, so for me personally, I’m glad to have that power now. I’m glad it wasn’t known. I’m glad I wasn’t forced into therapies. I’m glad I have the freedom to choose the right therapies for myself now. I’m glad there wasn’t another excuse to be minimised and dismissed throughout my life. Im glad I’ve been able to learn about myself, and make sense of my life, on my own terms. I’m glad I have met other Autistic adults, to know I am not alone – because, as a kid, living in a very small country town, I can guarantee my life as a child would have been miserable and isolating even more so had I, and everyone else, known

This is my truth, my perspective. My life. Your story might be completely different and that is okay! We are all different with the same Autistic core. I’m sure I will have days where I hate my Autism, I will fall back into the trap of being miserable about my past I cannot change – this is realistic. Today, however, I’m simply just glad I know now.

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This entry was published on August 14, 2016 at 2:09 AM. It’s filed under Uncategorized and tagged , , , , , , , , , , , , . Bookmark the permalink. Follow any comments here with the RSS feed for this post.

27 thoughts on “The power of diagnosis as an adult.

  1. Hi Amy, very well written, powerful and true. I would have probably been happier without the bullying and abuse I got because I wouldn’t fit in the mold, but in my native country, I would have ended up being forced into “special” education, which would have been the end of it, as the maximum to be “achieved” through it was 8th elementary, no job, no driving licence, and a yellow certificate attached to your ID…
    And just to make sure I’m emphasising the bit I like the most, I’ll just copy/paste it:
    “So I am glad I have this knowledge as an adult. It’s mine to disclose at my own discretion. It’s my β€œace up my sleeve”; it’s my power. I β€œdon’t look Autistic” and have passed for years. I know now why I struggle with some things – it’s not because I’m β€œstupid” at all. As a matter of fact I think that’s where Autistic adult power lies – in being underestimated. People focusing on our challenges and wondering β€œwhy?” yet missing our strengths. Our power is being able to offer an explanation, to say, β€œI am Autistic, I process things a little differently so can you explain *it* in this *way* for me please?”. It’s the power to look back and make sense of our past, to forgive ourselves for not knowing then what we know about ourselves now. It’s the power of self-discovery, to get in touch with ourselves, to learn about ourselves, to figure out our wants and needs, to find our limits and not push them because it’s a neurotypical expectation to do so. It’s our power to say β€œNO” without explanation to others because we have an explanation for ourselves.”
    Absolutely brilliant:-)
    And since I promised I’ll let you know news from my end, I had Monday my Learning Diffs diagnostic assessment, and lo and behold, been diagnosed (after 7 (seven) hours…) with Dyslexia and Dyspraxia, with special mentions about my Asperger’s signs and symptoms.
    So that’s it, I’m actually deep into twice exceptionally 2e πŸ™‚
    And to put the cream on the cake, I’ve got my unconditional place reserved to Sheffield Hallam University, for their unique PostGrad in Autism and Asperger’s from November 2017!
    Thank you for posting your journey, I haven’t been commenting, because it’s so intensely deep and personal, and therefore valuable, that I’d decided to just respectfully watch, and learn…
    Take care πŸ™‚

    Liked by 4 people

    • Hey there, wondered how you got on! Definitely would have been happier without those too, but I don’t think mine was anywhere near as severe as others’ I’ve heard/read about! Thanks for your comments 😊😊 made me smile!
      Oh that’s great! So glad you were able to find this out! Twice exceptional indeed πŸ˜ƒ wow, that sounds great about your postgrad too! I’m so happy for you!
      Ahh you’re lovely, feel free to comment whenever and wherever you like 😊
      You too!

      Liked by 1 person

    • VisualVox on said:

      Congratulations on your acceptance! That’s very exciting!

      Liked by 2 people

      • Thanks VV, it is indeed, but first I have to finish the degree I’m halfway through at the moment, and have my final exam of this year, next week…
        And I hope to all get together as I’m determined to throw everything in order to contribute in a both academic and practical way to the advancement of the better understanding of Asperger’s itself and also in its major correlation with Dyslexia (Dyscalculia) and Dyspraxia. No one should live their lives unnecessarily misunderstood and therefore mistreated for something which in my opinion are complex enablements and not dysfunctions. The problem lies (again) in the discrimination of individual characteristics/values, sacrificed (again) on some arbitrarily implemented altars of “generally accepted normality”. I DID NOT consent, nor agreed to being neither a “social element”, or a mere detail of any “bigger picture”. I’m absolutely happy being one face in one picture, instead of one in a crowd.

        Liked by 2 people

      • VisualVox on said:

        Well said! Best of luck, as you move forward. We need more folks like you.

        Liked by 2 people

  2. Cherry Blossom Tree on said:

    I came across this post serendipitously this morning (UK) from the Autistic Women’s Association on my news feed on Facebook. I felt compelled to write to you here because I could very easily have written this myself – I’m writing a quick post now where I will be linking to this post. I only received my diagnosis on Thursday the 11th so am still very much riding the wave of validation and it is kind of freaky how I keep coming across various posts about recent diagnosis and such… I just had to say a virtual ‘hi’ πŸ™‚ xx

    Liked by 4 people

    • Hi there! Thank you! That’s so cool that my post has been shared on Facebook 😊 and I’m so glad you can relate! I was diagnosed 29th July, it’s been a bumpy ride the past few weeks, lots of fluctuations which I didn’t expect but it’s all part of the process I think 😊 you’re definitely not alone, I’m on the other side of the world (Australia) but we’re part of the same tribe xx

      Liked by 2 people

  3. VisualVox on said:

    Thanks for this. I feel the same way.

    Liked by 1 person

  4. Pingback: Invigorated!! | ...i am my own experience...

  5. Oh, annoyed. I typed most of a comment then accidentally hit “log out” and lost it. 😠

    Anyway, I wanted to say that this is a lovely post and I found it really interesting what you have to say about the passing privilege you (and I) have. A couple of local families have an autistic member (I think – I know distance diagnosis is wrong but there are some things about people’s movement/speech that are suggestive), and when I see them I have that little spark of “I do that too! (But only in private)” that I’ve always had.

    And then, it always then strikes me that everywhere they go, people know up front that they’re different. When people see me, including that person, they can’t know. And the individual I’ve seen couldn’t get that moment of recognition about me, if they wanted to look for it or were prone to feeling commonalities with people. It feels like an uncomfortable power differential between me and the other person and that’s the moment when I’m most conscious of that privilege.

    I think with regard to whether earlier diagnosis would have been better, for me I think it would have. Perhaps it depends on the balance between what you feel you’ve lost versus what you feel you’ve gained. I often wonder whether I would have ended up with the psychiatric problems I have now without the pressures and struggles of undiagnosed ASD.

    Liked by 1 person

  6. Oh that’s frustrating! But thank you for retyping it! 😊

    Thank you and I understand your perspective completely 😊! I also do understand that an earlier diagnosis would have been preferential for some (maybe most?), I’ve been misdiagnosed bipolar with BPD traits, depression and anxiety – I never thought bipolar or BPD “fit” and I see how my depression could be explained as Autistic shut-downs, anxiety seems to be part and parcel with Autism. It definitely depends on past life experience as to how everyone answers the question, and yep I agree with it depending on that balance 😊 xx

    Liked by 1 person

  7. “I see how my depression could be explained as Autistic shut-downs, anxiety seems to be part and parcel with Autism”
    In specialised literature, that’s on “open secret”, everyone seems to know, but not many seem to bother about.
    I just wrote a paper about the matter, I’m curious how my academic circle might react, but I’m sure it’s going to be one of my main endeavours to demonstrate a necessity of introducing mandatory Asperger’s screening to all patients accessing primary care points of contact with symptoms of Anxiety and/or Depression. After all, the Baron-Cohen ASQ test is readily available. Otherwise, as unfortunately proven by practice, precious time is wasted and people sent to wrong “recovery” (read medication dependent only) pathways.
    Been there, done (swallowed) that 😦

    Liked by 1 person

    • Sounds like a brilliant idea! Yes, currently in the process of coming off anti-anxiety meds, have been on anti-depressants in the past = amazing how these “worked” initially until I was triggered again … Placebo effect!! I told my doctor I’m coming off them because they’re numbing “symptoms” when the “cause” is neurological, never will go on SSRI’s again. I’m working on finding the causes/triggers of my anxiety myself, I know my mind better than anyone, so I’m becoming the expert of myself πŸ˜‰. Keep up your great work, will be invaluable, this part of your Autistic circle approves βœ‹πŸ˜Š

      Liked by 1 person

      • Oh thank you so much:-)
        I really appreciate your words.
        Just really, really careful with coming off meds, keep a very close watch on every little detail, and if in doubt, talk to your prescriber, they MUST offer you support following your choices.
        Wish you all the very best πŸ™‚

        Liked by 1 person

      • He surprisingly was very cooperative, I’m on a relatively small dose but he’s given me a 6 week “plan” to come off them slowly and I’m happy with that, certainly wouldn’t go off them cold turkey 😊 thank you 😊

        Liked by 1 person

  8. VisualVox on said:

    Reblogged this on Under Your Radar and commented:
    I can really relate to much that is said here. It’s so true, that I would also not have wanted to be diagnosed and pointed out as different and separate. I started public school, when special education was undergoing a lot of changes with mainstreaming kids, and I was in speech therapy for a while. I was also in gifted classes, and it was hard enough being called out as needing speech therapy (which didn’t work, by the way) and gifted classes. But being identified as autistic… I think that would have added to my overwhelm.

    Liked by 2 people

  9. “Today, however, I’m simply just glad I know now.”

    Took me a while to get to this point, but I’ve been there a while. I’ve experienced much of what you’ve talked about.

    Liked by 1 person

  10. i have aspergers.my blog is below mark

    Liked by 1 person

  11. Diagnosis as an adult brings us power. Power we never had as children and clarity that we never knew. It is as if we have emerged from a thick dense fog that surrounded and encapsulated our lives with a sense of uncertainty and deep seated insight that we were indeed somehow different but could not work out how and why…

    Liked by 1 person

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  13. Great post, you have given me lots to think about. Sometimes, when I was in my youth, I wished that people would have picked up on my ASD as that would have spared me from lots of bullying and pain but your post has made me look at this differently.

    Liked by 1 person

  14. Reblogged this on ARC Books and commented:
    I’m working on getting a diagnosis (as an adult) for autism/aspergers, I hope it will make some positive differences in my life, but I have, often, wondered whether things might have been better if I was diagnosed as a child, the signs were definitely there, but no-one noticed or paid attention to them.

    Liked by 1 person

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