late diagnosed autistics: (when) do you disclose?

September 15, 2024 2:49 PM

I’m curious how you approach disclosure and in what arenas (work, social, other). Do you do so case by case, by a hard and fast algorithm, other? I’m open to a bunch of perspectives including early diagnosed, other invisible neurotypes/disabilities and even second hand (ex. you have an autistic partner or close friend and want to share what works for them, etc). Open to both autism as a neurotype, and as a disability, schools of thought.

I beg: no unhelpful commentary about “how common” this diagnosis is lately (ugh) or how we’re all a little bit autistic (UGH!!!!) thanks!

As of July I have a formal diagnosis. I wasn’t expecting it (I was being assessed for a brain injury and ADHD, and I’m acutely aware of how female-presenting adults are massively under diagnosed!) and while I had known I’m autistic internally for a while, the shock of (for once!!) getting an affirming Official Diagnosis is making me reconsider how I want to approach disclosure (if at all).

If it matters, I’m 35, femme, queer and unhappily part time employed because it’s just not a good fit for my strengths. Seeking my next career move to hopefully accommodate myself better at baseline and avoid my (4th?) job burnout.

posted by seemoorglass to Human Relations (11 answers total)

I told a few non-work friends and two siblings, but in part because I have a kid who is autistic and wanted to sort of pre-check before sharing her diagnosis in any way (with kid’s permission - kid veers between open and closed). One person was less than kind and we are not close now. The others were good and it’s like the adhd is on a practical level way more impairing, so it’s not major.

But for me personally, hard. Like coming out hard. I’ve disclosed I’m queer at work to a few people as a in-passing mention and it’s also been good for some and one person turning out to be super homophobic. So I’m careful. Where I live has no legal protections for any of this and a lot of stereotypes and it’s like - exhausting to be a poster child or push back all the time or be dismissed.

So I would go slow and maybe sound out people on other people who are autistic or play one on tv as in - are they aware of real autism is diverse and not just Rain Man stuff? Before disclosing.

I will say that when you meet someone who is also on your neurodivergent wavelength esp. at work it’s like oh yes, okay I don’t have to monitor all this and can just talk! Which is a great feeling.
posted by dorothyisunderwood at 6:28 PM on September 15, 2024 [1 favorite]

I think it's worth considering what you aim to get by disclosing. I would assume it's "understanding and accommodations". Outside of Very Internet People, most of the world doesn't really understand neurodivergence, so if it's a context like that, disclosing may not get you either of those things (it should! But realistically... it may not).

It may serve you better to just think carefully about what you want and what would help you, and find a job where those things are pretty doable, and ask for the specific things you need, rather than make a blanket statement about your neurotype... which, when shared with ppl who don't understand it, may succeed in getting stigma but NOT get you the specific things you need! But many accommodations are pretty doable in a lot of workplaces so just asking for specific things may get you pretty far.
posted by nouvelle-personne at 7:01 PM on September 15, 2024 [7 favorites]

I don’t really think of it as a disclosure, just a basic fact about myself. I talk about it whenever it’s relevant, to whoever I feel like telling it to. Most friends and family are aware - many of them are autistic too so it’s not even slightly a big deal. Some work people know, with no particular rule behind who knows and who doesn’t. The ones who don’t know, I will be fine with telling if it’s ever relevant to a conversation. There is no one in my life I’m making any active effort *not* to tell, or who would be at all likely to take it badly.

I think I might feel differently if I had been younger when I got diagnosed, in the same way that I was more circumspect about queerness or my mental health diagnoses when I was younger. But here in my mid forties, my ability to give any fucks about what people think about any of these things has just about worn away entirely.

My partner recently just got a formal autism diagnosis as he nears fifty and is very excited about finally having confirmation of that. He’s told most of his friends at this point, and the family he is in contact with, but does not work because of (unrelated) disability issues, and is no contact with other (terrible) parts of his family.
posted by Stacey at 7:03 PM on September 15, 2024 [1 favorite]

I got diagnosed over 10 years ago and did not disclose to my food co-op employer until after I retired at the end of 2019. I did disclose to my former manager this year and he was not surprised at all. His comment was that it explained a lot but he and the other staff admired my creativity and out of the box thinking. I did disclose to my sister right away since she has many of the same behaviors. In the last four years I have told all my closest friends and most of them had suspected it. Totally out to my Disability Book Club friends for two years and it feels good to be able to discuss our varied disabilities freely.
posted by a humble nudibranch at 12:07 AM on September 16, 2024 [1 favorite]

I learned my lesson about not disclosing socially during grad school, when suddenly everyone stopped taking me seriously and I lost my one friendship completely. I would never in a million years disclose ar work if you have any desire to progress further in your field, and certainly not if you ever want a management position. I used to think I didn’t, but increasingly I do, and I am so grateful I never shared. Lastly, it has torpedoed pretty much every romantic relationship where I disclosed (except for those with fellow autistics, and even then I’m pretty sure it damaged a couple of those too). Outside of certain corners of the internet, it is still perceived exactly like it was in the 1980s, and I now never bemoan the “tragedy” of late diagnosis. People (including professionals in all kinds of adjacent fields), truly don’t get it. For me, it only helps me understand myself, and for a few close friends to understand me better. I personally find the current state of online Autism discourse insufferable, because the vibe can get too obsessive for me, and can give people a skewed perception about how much serious damage they can do to their lives by disclosing in the wrong context to people who will 1000% misinterpret the information
posted by octaviabutlerfan at 3:40 AM on September 16, 2024 [8 favorites]

At work, I ask for specific accommodations rather than tell people I'm autistic, because most people don't know what autism is and I'd rather not be exposed to their ignorant reactions.

So I say "I'm sensitive to sound, is it ok if I wear noise cancelling headphones" or "could you please write down those instructions, I struggle to absorb spoken instructions" or whatever it is I need. My logic is if they're going to to deny me the accommodation if I simply explain why I need it, they'd also deny it if they knew I'm autistic.

The exception is with therapists and psychiatrists. It's essential to have neurodivergent affirming care for mental health, and we tend to respond differently to therapy and psych meds than neurotypical people do. It's also a filter to test wether a therapist or psychiatrist is worth seeing: if they respond poorly to the fact that I'm autistic, that's a bad sign.

Socially, I'm pretty open. I'm "out" as autistic on social media with my real name.

I do talk about it with friends, many of them are probably neurodivergent. ND people tend to make friends with and partner up with one another, so you might be in a similar situation.

Many of my friends are at the "I guess something is up with me but I don't want to label myself" stage so it can be a bit awkward.

I have told all my siblings that I'm autistic, but I haven't told my father. He's in his 80s and can be quite (autistically!) oblivious about saying hurtful things so I'd rather not deal with that conversation.
posted by Zumbador at 4:43 AM on September 16, 2024 [10 favorites]

I agree with Zumbador's approach to workplace. It's nobody's business what you have, but is their business to reasonably accommodate you. My common requests are "I work with headphones on because I am easily distracted by sounds" (I tell and don't ask on that) and "Please don't assign me a task when you stop me in the hallway on the way to a meeting because I will not remember it when I sit down. Can you email that to me instead so I can make sure to get it done?"
posted by notjustthefish at 6:37 AM on September 16, 2024 [6 favorites]

For me (currently 45, formally diagnosed in 2005), disclosure is absolutely on a case by case basis. I'm pretty open about being autistic in general; it's on my social media, my whole family knows, my employer knows, etc. But on a personal/everyday level (eg, casually with colleagues, friends, and acquaintances), it's something I tend to bring up if and only if the situation arises. Eg, if someone discloses their neurodivergence to me, I will always reciprocate this in solidarity. That's honestly the most pleasant circumstance.

The somewhat less pleasant one is when someone makes a negative generalization about autistic people or starts spouting off misinformation about vaccines, etc; in those cases I will sometimes disclose for the sake of trying to do my part to increase the signal to noise ratio in the world regarding autism & autistic people. And of course there's the other somewhat unpleasant scenario where I find myself out of my depth and need to disclose so people around me know why I'm acting or coming across a certain way (eg, if they ask why I don't make much eye contact or why I need to suddenly leave a noisy situation).

So - essentially, it's one of those things where my life is overall better for being fairly open about my diagnosis, but where if someone doesn't know (or where I don't know if they know), I will typically make a disclosure judgment call based either on (a) solidarity, or (b) circumstances that make disclosure the best option at my disposal.
posted by aecorwin at 12:32 PM on September 16, 2024 [2 favorites]

Work - never. Not worth the risk. As others have said, I ask for accommodations on a case by case basis or lie about having migraines to explain light and noise sensitivity if that’s the only way to be taken seriously.

Casual social situations - I generally don’t, but I’m also not exactly hiding it. If the perfect moment to mention it in conversation comes up, I might admit to it either directly or indirectly depending on the situation.

Close friends - when it comes up. I never formally Disclose; that is awkward and exhausting for me. I just let it come up when it feels natural.
posted by wheatlets at 9:58 AM on September 17, 2024 [2 favorites]

Response by poster: Thank you all for the thoughtful and varied responses! I’ve been mulling a lot lately, and I very much appreciate hearing different perspectives while I integrate my new knowledge. Leaving this unresolved only because comments are still welcome.
posted by seemoorglass at 10:49 AM on September 22, 2024 [1 favorite]

For me: whenever I want.

For the first year or so after my diagnosis, that didn't happen too often, but these days, I find myself almost eager to work it into a conversation. (I was told, or perhaps read somewhere, that it would take a year to get comfortable with the diagnosis, and that appears to have been correct.)

I haven't given this much thought before, but it's like my brain is keeping a running tally during interactions of how much I'm deviating from neurotypical behavior. When it gets to be significant, I feel like I'm doing both myself and my conversation partner a favor by explaining that I'm autistic, so some things work differently for me. (In a recent example, it was a preference to jump into a deep conversation pretty much immediately, rather than starting with more neutral topics and gradually moving deeper.)

I actually consider it to be a win-win-win scenario, because when I work it into a situation where I'm already being treated with respect, it's also an opportunity to show that autistic people are not as 'other' as they might think.
posted by demi-octopus at 1:47 PM on September 25, 2024