When Your Diagnosis Changes

Today I received a diagnosis of autism spectrum disorder.

For those who have read a few of my writings, you’ll know that this is a pretty big change for me. Prior to this, my diagnoses were generalized anxiety, EDNOS (anorexic type), major depressive disorder, and Borderline Personality Disorder traits. ASD was not even on my radar until the last few months, despite the fact that I’ve been through evaluations and in therapy and in the mental health system for nearly 5 years.

I have a lot of Feelings about getting a new diagnosis.

I feel some relief, because this was the first diagnosis that rang true to me, that I followed up on, that I sought out for myself, and that feels as if it might help to explain the things that underly all the anxiety and unhappiness that tinges my life. All of my other diagnosis have felt like an external framework that I tried to fit myself to instead of something that emerged out of my own behavior.

I feel some worry, because I am not the typical image of autism. I am very far from the typical image of autism. I worry about my road going forward as a verbal, “high functioning”, female, activist autistic.

I feel confused because I still don’t feel like I can claim the identity autistic. What if it changes again? What if it’s not quite right? It doesn’t feel like an identity in the way many other autistics mention when they say it’s more their identity than their gender, or something that colors everything about the way they see and interact with the world. Perhaps this is because I haven’t noticed all the ways it affects me yet. Perhaps it’s just that I am really good at passing as NT. I don’t have a lot of the anger that many autistic advocates have and I can’t ever see myself having it. I don’t feel like I belong to that community.

I also feel something like regret. You see I’ve written openly about my past diagnoses in quite a few places. I’ve written about what it’s like to have BPD and how BPD affects me. But now I have the autism diagnosis. I feel a sort of fear/regret/worry that I have been lying or misleading people about what it’s like to have BPD. I worry that what at the time seemed like activism and honesty, telling people the truth of mental illness and giving others with BPD hope, turns out to have been a lie or a mistake all along.

But my ASD does not negate my BPD. I still have the BPD traits. Those still count. That honesty has paid off, because I have not hidden anything about myself or my feelings as they change and grow, which means that it’s all laid out there for others to see that those diagnoses weren’t quite right, and that this one fits and might offer some help and relief. I’ve also been honest about questioning my diagnoses in the past, and asked about connections between autism and BPD openly and often. I have never pretended that I am the complete expert on anything but my own experience. And I’ve been honest about the parts of BPD that didn’t quite make sense to me. So I suppose there’s a tinge of pride that I’ve been the only kind of advocate I know how (one who only focuses on me, myself and I JK lol kinda true though) and done it to the best of my abilities. With transparency and with a curious, open mind.

And of course I feel hope. I feel so hopeful that this might offer me some relief. That I might finally have some explanations for why everything seems so frustrating and overwhelming and impossible. That there might finally be some ways to stop the things that trigger excess anxiety before they happen. I can ask people straightforwardly what they’re feeling and why, or let them know with more clarity what I think and feel rather than trying to rely on my (shoddy) social skills and theory of mind to figure out who knows what.

And then there’s the added stress. Who do I disclose to? How? When? Obviously here I am disclosing to the world, but that’s very different from telling people at my work, who would not read my blog, or from telling my extended family, or from talking to my friends about what the diagnosis means for me. It’s a whole other piece of myself to start contemplating, and as you may have picked up at this point, I am really good at spending too much time contemplating myself and trying to understand the what and the why of my brain.

I feel a little bit frustrated. I have seen nearly a dozen therapists over the course of the last ten years. Some of them I’ve worked with for long periods, others briefly, but no one has ever said the word autism to me as a potential explanation for some of my behaviors and stresses. This diagnosis, which is probably the one that gives the most information to me about how to approach myself and the world, is the only one that I have ever had to learn about, research, discuss, and obtain for myself. I do feel proud that I was able to do that for myself, that I was able to recognize something about myself and have it externally validated, but I’m frustrated with the lack of education about how autism presents in women, because I am not entirely atypical in that regard. There is huge overlap between anorexia and autism in women. Someone should have been able to see it.

But also fuck my brain because who has BPD and autism? (lots of people. The answer is lots of people.)

So overall I’m hopeful. But the whole process once again reminds me of why I talk so openly about my mental health, because identifying and understanding these diagnoses is complicated and confusing, and it requires self advocacy. The reason I was capable of doing this was because I have researched and learned advocacy for the past three years on this topic. Not everyone is so lucky.

4 thoughts on “When Your Diagnosis Changes

  1. toucan says:

    Just dropping by to let you know that I am glad — and inspired that you’re coming to this with hope (even though I know it’ll be a rollercoaster over time.) Too often, people write and talk about all types of mental illness like it’s the absolute end of the world, and confirmation of the issues people are facing means there’s no hope. This perspective needs more air time.

  2. DC says:

    I wanted to add my good wishes and appreciation. I love that you’re discussing the topic not just of autism and BPD, but of what it’s like for an activist to have a long-term diagnosis unexpectedly revised. Mental health issues in particular can be hard to pin down because there’s so much subjective variability, and because there usually isn’t a way to look at something under a microscope and give a clear diagnosis. I bet this experience is something a lot of people in many communities can relate to.

    Also: from what I’ve experienced, the online autism community is fantastic! I’d feel privileged to belong there. I hope you have a lot of fun figuring things out.

  3. In the last few months I’ve received an autism diagnosis at the age of 21 making sense of my previous diagnoses of dyslexia, depression and anxiety. Discovering ASD has been one of the most revolutionary ways to look at life and I’ve been fortunate to have met people who spotted this while I’m still relatively young.

    I am still struggling with the prospect of disclosing this to my parents and family. Your blog has helped me get past self harm and depression to realise that I’m not alone in all of this.

    Thank you.

    • oj27 says:

      I’m so glad to hear that the diagnosis was helpful for you (and that my blog has offered something useful to you). I’m sending you good thoughts as you move forward 🙂

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