Have you experienced a difference in how self-diagnosis is viewed and accepted within autism and ADHD communities?

I want to genuinely understand. I know that there are social differences, and differences in support needs, in terms of that affecting how self-diagnosis may be viewed.

I posted a vent validating self-diagnosis in the ADHD sub yesterday, fuelled by a comedian who did a bit about 'Fake ADHD'. I didn't expect it to be controversial or disagreed with so much.

I understand the reasoning behind a lot of the criticism, but I am still lost when it comes to specific comments that were downvoted, because I didn't feel it said anything wrong, or even disagreed with the consensus of the criticism.

One of the reasons I believed that self-diagnosis was considered okay is because of it being validated in the autism community, so I assumed that carried forth with ADHD as well. They didn't outright invalidate the process of self-evaluation but they did invalidate a self-diagnosis for various reasons. And a lot of the reasoning was valid, although I wasn't clear in some areas, and confused about the consensus, and about where people were agreeing vs disagreeing with me.

For example, a comment that concluded by saying People can’t diagnose themselves with mental health issues, especially with absolutely no training got a lot of upvotes, while my comment they were disagreeing with got downvoted.

I understand there is context and nuance, but there are a lot of areas where I'm still left confused and I'd like to gather information from a wider pool of the neurodivergent community to understand more.

To be clear, I am diagnosed with ADHD. I suspect I have AuDHD and relate to the experience of AuDHD a lot more than just ADHD. That's why I'm choosing to participate here, with the trust that I am welcome.

I would appreciate any insights and thoughts you may have.

Edit: My reasoning behind validating it came from these areas, some of which I touched on in the vent but not all:

1. Its value as an important tool in the process of understanding and unmasking before you can even pursue a formal diagnosis.
2. Lack of accessibility to receive a formal diagnosis. Cost, geography, stigma, waitlists, family situations, etc.
3. Many conditions, especially autism, ADHD, PTSD, personality disorders, chronic mental illness, are frequently missed, especially in women, minorities, adults, and highly masked people. They are often dismissed and invalidated, and it seems to require vehement self-advocacy before they are taken seriously and treated appropriately.
4. Lack of research into how ADHD and other conditions affects women and adults. It is not widely seen or understood, especially in countries like mine. Only young children tend to get diagnosed, if at all.
5. Being high masking, especially when there is a presence of comorbidities, making it really hard to see it. In my case complex trauma, resulting in hypervigilance and people pleasing made a lot of ND traits highly masked. Again ties back into a lack of research and understanding in these areas.
6. Doctors themselves rely heavily on self-reported symptoms for psychiatric and neurodevelopmental conditions.
7. People also usually do extensive research before self-diagnosing, it rarely seems as impulsive as critics make it sound. (I don't count NTs saying 'everyone is a bit ADHD' as a self-diagnosed ADHDer.)
8. Historically, awareness of many underdiagnosed conditions has come from people recognising and advocating for themselves long before systems fully caught up.
9. Invalidating self-diagnosis can discourage them from exploring or understanding their symptoms for fear of being seen as a poser and being invalidated. Obviously we needn't actively encourage "diagnosing" yourself but rather learning, understanding and attempting to pursue a formal diagnosis where it makes sense. But what I mean by self-diagnosis was learning, researching, unmasking and participating in ND spaces with curiosity, openness and sensitivity.

“It took many years of vomiting up all the filth I’d been taught about myself, and half-believed, before I was able to walk on the earth as though I had a right to be here.”

― James Baldwin

And it's the hardest thing I have ever done, and I am not yet there but I have hope that I will be, now that I am finally on the right path.

I hope to be able to walk the earth as though I have a right to be here soon, because it feels crushing and paralysing to feel so small, so ashamed, and so broken. And I don't want to lose any more years to living in survival mode.

Edit: I feel profoundly sad and alone. Would appreciate some hugs.

I'm super curious. I'm listing the 3 individual countries that were top in the post insights for my previous post.

Reddit only allows 6 poll options. If you're from elsewhere, please comment down below!

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This is such a funny phenomenon.

I have something to do in the morning that I need to wake up for, and I'm much more likely to have a good day if I just went to bed now. It's already 2am.

I'm not doing anything and there's no reason not to sleep, but I just get paralysed doomscrolling or doing the most random useless things instead of sleeping.

Night time is peaceful and rejuvenating, so no matter how sleep deprived I am, or how important sleep might be on that day, it's hard to let go of it.

And I allow myself to do it often. But there are days like today when I'm tired enough to sleep, without anything particularly interesting to do, when I'm actually looking forward to the next day's events, for which I need to be well-rested. And I still inevitably procrastinate, stay paralysed and stuck and don't go to bed.

In the moment, to not do this feels like giving up precious me-time. And a bit of the executive dysfunction kicks in, making it hard to transition from doomscrolling or an activity, to bedtime routine (even if it's as simple as loo, brushing teeth, meds, water, maybe a pimple patch) to finally bed.

Share your experience, insights, or tips and tricks.

In my top 3 Hyun-bin songs for sure. And the MV with the footage from the World Cup is just peak fun, good energy and don't-take-yourself-too-seriously vibes. (Perhaps the lyrics are contradictory to the 'don't-take-yourself-too-seriously' part but that's how it feels to me!)

I know the footage relates to the lyrics but it also feels a bit random (in a great way), perhaps with the 2000s quality, classic trot energy and some bits of the footage being sped up, which is funny. And the song is from 2006 but the footage is likely from 2002, adding to that random feeling.

The background dancers, their costumes and the set. Park Hyun-bin's stage charisma. The fun footage. The onomatopoeic ppa-ra ppa. I love it so much, it's an immediate mood booster.

I had an appointment with my psychiatrist today and we were discussing medication, so I had to tell her about my inability to take it at a regular time in relation to my N24. (I am primarily being treated for depression, anxiety and ADHD and I want to focus on those symptoms without touching sleep because I need life to get easier overall before trying to shift my sleep in any way.)

I’ve mentioned the symptoms before, but the classic N24 isn’t present anymore since I take melatonin so it's been hard to explain to her. It still seems to be an erratic version of it but you can still see the N24. The thing is, I still don’t take melatonin at the same time every day for a few reasons, so right now I’m mostly using it to treat insomnia and quieten my brain before sleep rather than treating the N24 itself. But it gives me enough control to slow down or accelerate phases of my cycle when needed.

Anyway, I managed to very nervously tell her about the condition. It didn’t seem like she had heard of it before, but thankfully she wasn’t dismissive and she did hear me out. I also stood up for myself by sharing what I’ve discovered and understood from being on here.

It's funny in retrospect because she kept asking me "So what time do you wake up?" even though I was telling her it keeps changing. She seemed to find it hard to understand.

It feels so difficult telling someone I have some super rare sleep disorder. It’s hard to validate myself and feel like I’ll be taken seriously. Cause any day-walker who hears this seems to find it so bizarre, and I don't blame them. It is bizarre, but it doesn't mean it's not real.

I feel like I’m collecting disorders like trophies at this point, and I worry I come across like some silly girl self-diagnosing for attention. It’s especially difficult with doctors because it feels like I’m telling someone who’s supposed to be an authority on my health what I have.

All my life I've been careful not to make doctors feel threatened about their authority, but I am starting to believe that I am the best authority over myself. A lot of doctors can be too egotistical to take that well, especially when they’re unlikely to even have heard of the condition. Honestly, I get the feeling even the few sleep clinics where I live mostly just treat sleep apnea in 99% of cases, so people with N24 are probably often misdiagnosed even if they got a consultation.

She said she’d like me to think about fixing it at some point and moving to a day cycle. She mentioned that research suggests important hormones are released during certain hours and that it’s beneficial to sleep in accordance with that rhythm. She did acknowledge I might be in the tiny percentage of people who don’t fit into that, though I felt she mainly said that because I was firm in saying I am different.

Socially, it makes perfect sense why I might want a more regular routine. But even from a purely physical standpoint, she seems to believe there are benefits to a regular night-sleep/day-awake rhythm. At one point I got frustrated and asked her why I need to change it if I’m able to work with it socially, and that’s when she brought up the physical benefits. She does seem open to my experiences, and I plan on sharing some research and my sleep data with her. But I just feel very overwhelmed by all of it.

I know there isn’t enough research on N24, and it was evident she didn’t know of it, though to her credit, she didn’t pretend that she did. I think I just feel overwhelmed because I’ve spent my whole life fighting to be heard and validated, and throwing a rare sleep disorder into the mix doesn’t exactly help. I mean, I’ve always had this, and now I finally have the words and tools to understand it better, but it's hard to be taken seriously.

Edit: TLDR: I very nervously told my psychiatrist about my likely N24 and stood up for myself. She hadn’t heard of it before and wasn’t entirely dismissive, but suggested I should try to shift to a normal sleep schedule. I feel overwhelmed by how hard it is to be taken seriously with a rare disorder.

Everything is easier to do at night. Or maybe in the evenings or early mornings when it’s darker. The day is just too bright and hot (even though the temperature is actually pleasant now given the rains, it seems like for me brightness = hot) and uncomfortable, and everything feels more tolerable and even pleasurable at night. 

I bought an ice cream sundae and as much as it would be nice in the afternoon (again it’s not hot anymore so why does it feel so?), it would be even better when I’m fully relaxed and watching my show at night so I’ve kept it for the night. And my show is definitely better to watch at night, like 99% of what I watch. I can immersive myself into it a lot more.

It’s easier and more pleasurable to shower at night, I can drown out everything else and just focus on the relaxing sensations of water. 

Talking to people and hanging out with them is also better at night. Working is definitely better at night, I feel sharper and focused. Going out is 1000% better at night, the night life of any city is superior to the day.

I keep everything for the night because everything feels better at night.

When everything is better at night, how am I supposed to live a life during the day?

The album itself was compiled in 2011.

One of my favourite trot songs.

The song was released in 2002, this live performance might be from a few years later.

Audio