The Trauma of Late-Diagnosed Autism

Processing my recent Autism diagnosis at 34 years old and the trauma that comes with it.

The Trauma of Late-Diagnosed Autism
Photo by Impermanent / Unsplash

ICYMI: If you don’t follow me on social media or know me in real life, you might not have seen the announcement about my diagnosis. So, I’m posting the IG post here so you have some context going into reading this blog post.

IMPORTANT: I can't stress enough that this blog post represents MY personal experience. There is no one way an autistic person looks or acts and perpetuating that idea only adds to the stigma and misinformation that makes it harder for people to get the help they need and deserve.

Are you guilty of giving everybody else a break before you give yourself one?

Of preaching the importance of self-care and rest while feeling unworthy of self-care and rest yourself?

Because that’s where I’m at right now and it’s pushed me to the point of barely being able to function.

It’s been less than a month since I received my Autism diagnosis and I’ve hardly given my brain the space and time to process before jumping in to try to help everyone else process it.

Before my diagnosis, I spent months researching Autism and talking to members of the #ActuallyAutistic community. I spent months questioning my brain and wondering if I was in fact autistic or just experiencing OCD which, for me, primarily manifests as health anxiety. I felt like an imposter and like I couldn’t talk about it on my blog or social media because of the shame and embarrassment I knew I’d feel if I was wrong. So I kept it all inside.

Do you know how exhausting and traumatizing it is to not know if you can trust your own brain?

To try to talk to those closest to you about what you’re going through and realize that they think they know your brain better than you do?

To talk about the way that you feel to medical professionals and be told that you’re wrong?

So, when I finally received my diagnosis, I wanted to tell the world. I wanted to prove to everyone that I wasn’t crazy; that I know my brain better than anyone else does.

I felt a lot of things (and still do) and anger was at the top of the list.

Anger at all the people who didn’t believe me, including doctors who should have known better.

Anger at all the outdated information and stereotypes about autism that prevented me from getting diagnosed until I was 34 years old.

I jumped right in ready to dispel myths and advocate for my new community and ignored the fact that in order to process this diagnosis with all of you, I need to process it myself first.

I told myself that if I received a diagnosis I’d finally be able to unmask and stop putting so much pressure on myself. I’d have an excuse to slow down and since my diagnosis I’ve done the exact opposite. I’m trying to move forward as if nothing is different while knowing full well that everything is different.

Receiving an Autism diagnosis didn’t magically make me autistic; it’s not something that comes on suddenly. I’ve been autistic my entire life and now not only am I’m dealing with the aftermath of this realization for myself but worrying about how everyone else is dealing with it, too.

On Monday, my therapist told me that my inability to function lately is a trauma response. Trauma from spending my whole life trying to navigate a world that isn’t set up to work for my brain; from being told that my very real experiences are not valid - that I was being a hypochondriac, dramatic, and too sensitive.

Trauma from spending all of my energy trying to please everyone and do the things that I thought I had to do to fit in, to not be rude, to make people like me only to feel even more like an outsider, to be told that I’m too blunt and rude, to have people call me weird and difficult without ever knowing what I was doing wrong.

Just a few days ago, I attended an event with Jeff where I sat alone and willed myself to feel ok not socializing even though everyone else was. I thought about every time I’ve ever forced myself to make small talk because it was the “right” and “polite” thing to do even when it resulted in me completely shutting down and not being able to function for hours or days afterward.

On Saturday, we sat outside at a cafe where the people at the table next to us spoke so loudly that I thought I might have an anxiety attack. I knew that putting my headphones in would make me feel less anxious but I also worried that it would seem like I was ignoring my husband so I left them out and internalized the anxiety. Jeff would have been completely fine with it but I still couldn’t bring myself to do one simple thing to reduce my anxiety because I was too afraid of seeming rude to other people.

Add all this to the fact that the 28th of this month marks 10 years since my father died and it’s no wonder my brain is shutting down. It’s screaming at me to stop trying to do so much and to stop feeling so guilty about not being able to function like a “normal” person.

The day after I received my diagnosis, I posted about it on Instagram and immediately gained 100s of new followers. The Monday after my diagnosis I started to write a blog post about how I received my diagnosis and put so much pressure on myself to finish it quickly because I thought I owed my followers that.

Writing is how I process things so I thought it would be good to get it all out as soon as possible but what I didn’t realize was that writing my story from start to finish would be incredibly difficult.

Looking back on my life and reevaluating all the times I thought I was just socially awkward or a failure and realizing that it was in fact just me being autistic is really painful.

Then there’s the fact I’m very new to the community and I’m trying to write about it without truly understanding it myself and am terrified of offending someone by getting the terminology wrong or adding even more misinformation to all that is out there already.

I’m acting like I’m still an imposter - someone trying to be an ally to the community without letting myself actually be a member of the community.

I’m trying to untangle what is Autism and what is ADHD or OCD or trauma because I feel like it’s disingenuous to call myself an advocate without knowing what the hell is going on in my brain.

But, here’s the thing, I do know what’s going on in my brain and the only reason I’m doubting myself is because I’ve had years of people telling me that I don’t.

The psychologist who diagnosed me told me it was very clear to her that I’m autistic and perhaps the only trait that might not fit is that I’m very self-aware. I’ve always needed to know why my brain is the way it is and that curiosity and self-advocacy finally led to my diagnosis.

All this is why I haven’t published my post about how I was diagnosed yet. It’s taking longer than I imagined it would to get it all out in words. So I started another blog post talking about all the things I’ve been loving lately and working on that post has been hard, too, because I’m putting pressure on myself to just act like everything is fine and normal but it’s not.

I’m very happy to have received this diagnosis. I’m not ashamed of it but I’m still processing what my life will look like going forward. It was easy to just jump into advocacy and educational mode because doing so let me stand outside of my diagnosis to explain it to all of you but the fact is, I need to stop talking about all this like it’s somebody else’s experience.

I know that talking candidly about my experiences has helped a lot of people. I know this because you’ve told me and every time I receive a message telling me that someone decided to go to therapy or start on antidepressants or figured out how to be there for a friend who is grieving because of something I shared, it reminds me why I do what I do; why I share my entire life even when sometimes I feel like I’m talking to myself, why I share my entire life with the internet even when some people in my life don’t understand it.

The truth is, I have to share here because it’s the only place I can be honest with you and myself. It’s the only place where I don’t feel like I have to mask. It feels safe.

It’s a way for me to empty my thoughts without having to talk about it in person. It’s my very sincere answer to “how are you?” which I often hide behind a smile or a joke when asked in person. It’s the only way I can express myself as I truly am and not as a different person to everyone I meet.

I am not brave for sharing. The reason I share isn’t to educate or advocate (although it just tends to happen that way). I’m not sharing for attention or fame.

I’m sharing to make sense of myself. I’m sharing to survive.

As always, thank you for reading!