Getting an adult autism diagnosis: Confirmed, confused, and validated

Last night I had therapy. It was one that I was anxiously anticipating for a few weeks, and to be honest, the anticipation of this particular appointment definitely messed me up mentally a little bit.

What ended up being a nearly 2 and a half hour session definitely provided me with answers to questions I’ve had my entire life…but was always told wasn’t there. For my entire adult life, I wondered about certain things and why things were a certain way, or why I felt the way that I felt in some situations…but whenever I questioned it in the past, it was just brushed off and never looked into or taken seriously.

I’m choosing my words carefully and with an obvious filter here because I’m not sure exactly how I feel about everything that’s going on. Or what level of detail I’m ready to get into yet.

I feel angry that this is what I thought was going on all along, and even when I voiced it, it was dismissed and never even investigated.

I feel comforted and validated knowing that my brain works exactly the way I thought it did, but ignored it anyway because of invalidation from others, and now have a much clearer game plan moving forward. It’s going to be super interesting to see how things change, especially with therapy, if they change at all, in terms of how I think about things, or approach things.

I feel scared of what it actually means. While I’m the exact same person I was yesterday, last month, last year, 10 years ago, etc…there definitely is a stigma associated with this and I’m scared that I’ll get looked at differently by people I’ve known forever just because of the label.

It changes nothing, but it changes everything.

So, yes. I’m a female, I’m 30 years old, and I just got officially diagnosed with autism.

If you’re wondering, I scored INCREDIBLY high on the “masking” test (specifically a 149 on the CAT-Q test.)

A score of 149 on the CAT-Q test indicates a very high level of camouflaging autistic traits, falling within the “extremely high” range, suggesting significant effort to mask autistic behaviors and present as neurotypical; generally, scores above 100 on the CAT-Q are considered indicative of significant camouflaging.

So, yeah. That’s where the of course you’re not actually autistic immediate invalidation comes from. I understand it, I’m not mad about it, but it does hurt a bit.

I also scored in the “extremely high” range on the RAADS-R test, and would’ve scored even higher if I wasn’t such a professional at “masking”.

My therapist (who has the qualification and licenses and certificates to actually legitimately diagnose autism) administered these tests. And the tests in conjunction with her just knowing me for the past few months, sitting down for 2 hours a week just getting to know me and listening to me, along with the DSM 5 diagnostic criteria, yeah. It’s an official and legitimate diagnosis.

Which scares the shit out of me.

I have not told a single person this yet. And while normally I like to tell big things to people first directly…I don’t feel safe enough to yet. Not because of them, but because it just feels scary to me.

And if you know me in real life and you’ve read this, that’s fine. You’re allowed to. I know you know this blog exists, and with that comes the implicit understanding that you can read it whenever you want to. And you’re allowed to ask me directly about it. If I wasn’t being stupid about it, I’d have brought it up already. But I’m scared, and it is what it is.

I know that some things, like this type of diagnosis, come with judgments or preconceived notions, and I’m just so scared that I’ll always be looked at under a certain light, when that might not even be accurate or fitting for me.

That’s my biggest fear.

That I won’t be seen as *me* anymore, and I’ll be looked at as “oh, she has autism. She probably can’t control xzy and is therefore a shitty person”. When I can assure you, that’s just not the case. I am extremely in control of my every thought and action and emotion, and I can pick up on yours too. Whether you want me too or not. (Yay trauma and me being an empath, this is your time to shine! 🤦🏻‍♀️)

This diagnosis…having autism…It does make sense. And it does explain A LOT.

Like why I get triggered by certain things (talking to you, sounds and bright lights and smells!), and why social situations scare the fuck out of me, (apparently it’s more than just social anxiety 😬), and why I’m so mentally exhausted all of the time.

Because even though I’ve learned, rather masterfully, how to assimilate and mask and “fit in”, the parts that make all of that so hard for me, (ya know, the autism) still exist. And I’m just constantly overcoming and adapting and trying to exist in a world that’s really freaking hard.

A systematic review of relevant research (Ressel et al. 2020) suggested that up to 36% of autistic individuals have co-occurring issues with substance abuse. An online survey of over 500 autistic adults found that the rate of heavy episodic drinking was 54%, with the rate in the non-autistic population being 17%.

I was with my old therapist for 10 years. And this wasn’t her training or her specialty. So it was missed. It was missed by professionals and therapists and doctors and psychiatrists and literally everyone else growing up.

My new therapist has known me for maybe 3-4 months, and she brought this up relatively early on as something she was rather sure of. And she’s very careful and selective about who she actually and truly diagnoses with it.

I’m processing. It’s a lot. And I really don’t know how I feel about it yet.

My kids OT who I’ve known for years is the only other person I’ve talked to about this. And she laughed when I first mentioned it because it really is painfully obvious. I mean, shit. My kids are on the spectrum too, and I was able to see theirs SO clearly and get them tested and advocated for early on.

I just really believed the multiple people in my life who blew it off without even knowing me, and I stopped thinking about it altogether. Like, I knew I had sensory issues. Everyone knows that lol. But I just assumed it was just that. Or that was because of the ADHD.

So, here we sit. With 3 really firm and fun diagnoses of CPTSD, ADHD, and autism.

Now the fun part…figuring out which one of my neurospices is causing what, and specifically which are the autism problems vs the ADHD problems or the trauma problems.

To say I have a lot of work to do relearning myself and understanding myself is an understatement.

I’m scared, yes. But I’m also kind of excited.

It feels like maybe…MAYBE…for the first time literally ever…I’m on the RIGHT PATH for understanding why things are the way they are,