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When a Change in Diagnosis Makes You Question Your Identity

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Last week, I received a diagnosis of autism spectrum disorder (ASD).

For those who have read my story, you’ll know this is a pretty big change for me. Prior to this, my diagnoses were generalized anxiety, eating disorder not otherwise specified (anorexic type), major depressive disorder and borderline personality disorder (BPD) traits. ASD wasn’t even on my radar until a few months ago, despite the fact that I’ve been through multiple mental health evaluations and in the mental health system for nearly five years.

I have a lot of feelings about getting a new diagnosis. I’ve noticed changes in diagnosis are actually fairly common for people who spend a lot of time in therapy. Few people have nice, easy, clear diagnoses, and it takes many people a few tries to get one that seems right. That process can often be frustrating and confusing. I’ve found it difficult to process.

I do feel some relief. 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 things that underly all the anxiety and unhappiness that tinges my life. All of my other diagnosis felt like an external framework I tried to fit myself to instead of something that emerged out of my own behavior.

I feel some worry, because I’m not the typical image of autism. I’m 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 of 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 have embraced theirs, as something that colors 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’m really good at passing as neurotypical. I’m afraid I won’t 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 I’ve been lying or misleading people about what it’s like to have BPD. I worry 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.

I worry I might have caused damage when I wanted to help.

It’s easy to feel like you’ve been lying when your identity changes. This is true for all kinds of identities, from health to sexuality to a relationship. But a change doesn’t negate what happened in the past, or turn truths into lies. My ASD does not negate my BPD. I still have the BPD traits. Those still count. I didn’t lie to anyone. I was as honest as I could be with the information I had, and my identity is allowed to grow and change.

That is what I want to tell everyone who gets a new or different diagnosis. You are allowed to change, and you are still you. You can be confused about what this means for you, about what the future holds, about how this will change relationships or treatment. But you’ve done nothing wrong in telling people your past diagnosis, or seeking treatment for it, or trying to educate the world. Speaking openly and honestly about your vulnerabilities cannot be wrong.

I also want to offer hope, both to myself and to others who are getting a new diagnosis. I feel so hopeful 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. For me, the autism diagnosis offers a new window into why my anxiety is out of control and gives me new roads forward. For others, new diagnoses offer new kinds of therapy or medication. New information is good.

I also want to validate to others that frustration is an important and serious emotion in these circumstances. I’ve 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’ve ever had to learn about, research, discuss and obtain for myself. The process of getting the correct diagnosis is a difficult one, and sometimes mental health professionals are not entirely helpful. Especially with diagnoses like autism and borderline, which have long histories of stigma and gender imbalances, it’s easy to get angry at psychology as a whole. It’s easy to feel like you’ve been left alone to fight for services and recognition.

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.

So I want to offer this hope: the right diagnosis is out there. The right therapists and doctors are out there. It takes hard work and a lot of speaking up for yourself to find them. But it is possible to find the label that feels right to you. And that feels like a lot of relief.

Originally published: January 7, 2016
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