Is it worth it? Reactions to my late AuDHD diagnosis & the one that stung the most.

I’ve been asked a lot of questions since my discovery/diagnosis. People often reach out looking for information and resources, asking questions about their loved ones or themselves, wanting to know more about my experience, or to share their own experience. (All reasons I decided to start this blog and website).

One question I’ve been asked a bunch, goes something like this: “Was getting diagnosed at this stage in life really necessary/worth it?”

The short answer is, yes. Necessary for me. Zero regrets.

The longer answer is, yes, it’s been 100% worth it, but that doesn’t mean it’s been easy. (It’s also not to say that everyone has the same experience).

People seek formal assessment/diagnosis for autism and/or ADHD as adults, for different reasons. The main reasons I chose to do so were to find answers for questions I’d had my whole life, and for validation (these are common reasons I’ve heard from others, too).

I also felt that I couldn’t speak with any kind of certainty or authority unless I had a formal diagnosis from a qualified clinician. A history of being gaslit, misunderstood/misperceived, and learning to ignore or downplay your Spidey senses, will do this to you.

For the record - I wholeheartedly believe that self-identification is valid. I’ve yet to come across anyone in the neurodiversity affirming space who feels otherwise (including clinicians). Anyone who’s been there, knows the many barriers that currently exist to accessing formal assessment/diagnosis. We know how much research and self-reflection goes into this process before someone even gets to the point that they’re considering a formal assessment. (No, the vast majority of people aren’t just jumping on some Tik Tok trend bandwagon. Anyone who thinks that, has a lot to learn).

So yeah, some folks choose not to (or can’t) access a formal assessment. I was fortunate because I was able to.

For my own sanity, I needed a level of certainty that could only be had with input from a qualified professional. I also figured that if I had a formal diagnosis, people would just accept it as a fact. I mean, why wouldn’t they?

Turns out I was wrong to assume that.

Some people (who’d already been down this road) advised me to manage my expectations. To be prepared for the potential fallout, emotional roller coaster and mixed reactions that may come from declaring/sharing my diagnosis.

They were right.

I had (and still have) ALL the feels about ALL the things. There’s been fallout in ways I’m sure I’ll go into in future posts, too.
And mixed reactions?

Bloody hell. Yeah.  Both online and in person.

 Reactions range(d) from:

 “Welcome to the hood!” (from other neurodivergent folks)

to,

“Why do you need a label now when you’ve clearly managed this long?” (Because no I haven’t, and I was already being labelled with things my whole life, anyhow. Now I finally have the label that fits)

to,

“But you’re so high functioning” (Um, define high functioning. Also, how much my neurology impacts or is perceived by you, says nothing about how it impacts me, and has my whole life. Oh, and P.S. - AuDHD is a dynamic disability – functioning can fluctuate depending on a lot of factors at any given time. This is why functioning labels are inaccurate, at best).

Some folks reached out to say, “Omgosh, me too! Or, I think this might be me (or my loved one) too!” They thanked me for my willingness to share my experience publicly.

Others (including one medical doctor) responded with confusion, “You mean like Aspergers?” (Well actually, no. I mean Autism. Aspergers is no longer a diagnosis according to the DSM-5. It hasn’t been since 2013. Although, folks diagnosed prior to then may still identify with the term, and some people use it because they feel it holds less stigma and is more widely understood - that’s totally their call. Not for me to decide).

Some of these reactions were affirming and welcome comfort in topsy turvy times. Others were kind of expected but still irritating AF. There was one kind of reaction that particularly stung though…

No. Reaction. At. All.

(cue cricket sounds)

To be clear - I’m not talking about randos on the internet, or even acquaintances I encounter in the grocery store. I’m talking about people I’d consider to be in my sphere.

Look, I’m a 55-year-old woman with no expectation that I’m the center of anyone’s universe.

I know we can’t keep track of everything and everyone. Gawd, how I know! People have shit going on in their own lives to concern themselves with. Some are living in survival mode (even if we don’t see that) and they have no bandwidth to spare.

I also know that sometimes we mean to reach out. We may think of someone often, but for all kinds of very valid reasons (including our neurodivergence), we don’t connect. Oh, how I get that. No judgement here.

Imperfection is part of being human.

She says as she carries heaps of guilt around. Guilt about not being there in the capacity I feel I should, or wish I could, for other people at times. Even though sometimes, maybe even a lot of times, I’ve gone above and beyond. It never feels like it’s enough, though. Which is probably (definitely) my baggage talking.

Point is, I fully and completely understand that we can’t/don’t always do what other people need or want us to do. That’s okay. Especially if we’re not just withholding out of spite.

Back to the crickets…

Imagine, if you will, that you’ve just been diagnosed with, oh, I don’t know (insert whatever disease/condition that comes to mind).

You’ve known something’s been off for ages (maybe even your whole life). Now, you finally have an answer as to what it is. This is big news. It’s important to you. It might even help other people who are in a similar situation. So, naturally, you share it. Why would you keep that kind of news a secret? (Unless for whatever reason, you didn’t feel safe divulging it - which is totally valid).

So, you share your important news. Maybe with a few friends and family. Maybe far and wide. Whatever.

Most people respond with empathy, concern, interest, even curiosity. Makes sense, right? That’s what you’d do if someone you know (and maybe even care about) shared that kind of thing with you.

Maybe, there are a couple of people who question the diagnosis the doctor gave you, because “they know someone’s nephew who…”

Or maybe, a few say stuff like, “But you’ll be fine though. It’s not that bad. You’ll get over it. There must be treatment for that” Thoughtless and a little devoid of feeling? Sure, but at least they’ve acknowledged the news you’ve shared with them.

Then, imagine that there are folks who when they find out about this huge news, say nothing. Nada.

Zip. Zero. Zilch.

They look away, or stare at you blankly when you mention it. Maybe they ignore texts where it gets brought up, or they immediately change the subject. Maybe, they’re over in the corner just casually whistling dixie and pretending not to be paying attention to the entire conversation that’s happening just a few feet away.

They might even make comments about it to other people, because people talk. But not to you. To you, they act like they never heard a single word that’s come out of your mouth about it, for an entire year or more.

I know, right?

How do you deal with that? How are you supposed to feel about it? Do you confront them? Do you tell them how hurt you are? Do you give them the benefit of the doubt and shrug it off? Do you assume they’re not intentionally ignoring the elephant in the room? Even though, clearly, they know about it.

Are you supposed to read between the lines? Are their thoughts being implied by virtue of their deafening silence on the matter?

Do they think they know better about your lived experience (and the thousands of hours you’ve put into learning about the condition you’ve been diagnosed with) than you do?

Are you being perceived as a self-absorbed, over-thinking, over-sharing asshole?

What in the actual fuck does this non-reaction mean?

Look, I’ve developed a thick skin by this point in life. Maybe too thick. Decades of sucking it up, and of being subjected to a lot of emotional volatility, will do this to you. You learn to keep the hurt to yourself a lot. You mask it, and you make a habit of justifying other people’s (sometimes really shitty) behaviour with all kinds of excuses.

Thing is, under the tough exterior, I’m a total marshmallow. My feelings are intense and ever-present. Just last night, I bawled my eyes out all through an episode of The Bear. Then this morning, I cried again over all the injustice, hate, and ignorance in the world.

So naturally, when my (life-altering) news was met with silence/complete lack of acknowledgment by some people, it hurt. Like a mother.

Some days it still does, but a year into my diagnosis and I’m starting to realize that it’s not my job to manage or navigate other people’s reactions to me. I’ve already spent far too much time doing that in my life. I’m over it (most days).

I’m trying to have grace – both for myself and for others whose reactions (or lack thereof) have landed in an uncomfortable, sometimes painful way. I remind myself on the regular that not everything is about me. Of course it’s not.

People have their reasons and their stories. I have mine.

Why am I telling you all this, anyway? Well, because it’s my blog so I get to write about what I want, as long as it’s the truth. And even though I’ve written blogs in the past, this time feels like the truthiest truths I’ve ever told. It’s cathartic, and I’m allowing myself that.

I’m telling you this because I’m hoping that if you’re ever in my shoes you’ll know what to expect. I’m kind of paying it forward from the sound advice that was offered to me when I was at the beginning of this journey. It was valuable advice, even though I didn’t fully heed it because I recoil when people try to tell me what to do. (It comes with the territory when you’re a demand avoidant AuDHDer).

I’m also hoping that if you’ve been in my shoes already, reading this will help you feel less alone.

I’m offering this as food for thought to anyone who happens to be on the receiving end of someone else’s big news (like a late diagnosis of autism and/or ADHD), or anything else that might feel vulnerable but important to them.

Lastly, I’m telling you this because I want you to know that despite the mixed reactions and all the rest of it, I’d do it again in a heartbeat.

Like I said, no regrets.