#you do not need a diagnosis to be intersex

[ridibulous]

intersex people who are/were invisible to others and/or themselves, I love you. intersex people who don't have a cut-and-dry label or short explanation for their bodies, I love you. intersex people with imposter syndrome about their experiences, I love you. please have faith in yourself.

[bunn-iiii]

who decided that that endogenic systems were like. bad or incorrect or not valid because the stupid diagnostic criteria that is extremly restrictive doesn't cover them of which is a very prevalent topic among anyone who is neurodivergent, especially autistic people.

[libraford]

Here's what's going on in Ohio right now. Heavy stuff ahead.

First, I want to apologize for the misinformation in my original post. I am still learning about legislative processes. To correct: the changes to ODH and OMHAS in regards to gender therapy are not a bill, they are changes in regulations.

This is important because citizens CAN affect rule changes. There is an open commentary period where your submissions get counted and can affect how they write new regulations.

Disclaimer: I am not a lawyer, legal advocate, or medical professional. I'm just a dude who had to have it all explained to me.

The first one is Ohio Mental Health and Addiction Services. The rules proposed would make the already prohibitive process of gender transition even harder. In order to diagnose and treat gender dysphoria, a hospital needs to have a board certified psychologist per patient, a board certified endocrinologist familiar with the age group being diagnosed per patient, and a medical ethicist overseeing the hospital's plan for transition. 'Board certified' does not guarantee that the specialist is trans-friendly. It must include a detransition plan. Hospitals would have to report compliance annually. The professionals must have a contractual relationship with the patient, but do not need to offer in-person care. (In this instance, I'll get to that in the next rule change.)

This rule also deems it impermissible to prescribe gender transition care (this includes hormones, puberty blockers, or drugs) for anyone under the age of 21 without the approval of the professionals mentioned and 6 months of therapy.

There is an exception for intersex people, who may have their sex assigned to them without their consent.

The open comment period for this ends January 19 at 5pm.

Send an email to MH-SOT-rules@mha.ohio.gov with the subject title: "Comments on Gender Transition Care Rules."

The second one is Ohio Department of Health and it repeats a lot of the same as the first one. However, the focus is more on the regulation of doctors and paperwork. Anyone seeking transition will be put into a registry with their name redacted, but demographics like age, agab, specific diagnosis (difficult to achieve with the new regulations mentioned above), and any medications (not just related to gender transition, but any medications at all). Any cessation of care must be reported within 30 days.

This is a lot of paperwork and can overburden hospitals.

That 30 days cessation is important because if a person transfers doctors or if a clinic closes and the paperwork isn't filed, it may count as a 'detransition' when tallying demographics, even if that is not the case.

But what's curious is that the ODH regulations DO require in-person care. The rules are contradictory and vague.

The comment period for this ends Feb 5th.

Send a comment through the ODH website

Here are some important things that were mentioned at the meeting:

This is a good time to be personal with your statements. If this would disrupt your life in any way, please say so. "I fear that" "I believe this" "I worry that"- these are great ways to start your comment. An example one person gave is "I worry that this change in regulations would force me and my daughter to move out of state.'

With that being said, anything that you send to these sites will be public record, so be cautious about what you reveal about yourself in your comment.

If you are in need of help, please reach out to one of these resources:

Trans Ohio Emergency Fund Resource Page

Kaleidoscope Youth Center

If you are in need of legal advice on how to navigate all this, please call

888-LGBT-LAW

This is not everything. There is unfortunately more because Ohio decided to break a record this month with anti-trans motions. But today I'm focusing on things that we can take action on.

[queercripintersex]

To all those questioning if you're intersex

It's valid to call yourself intersex if you have PCOS

It's valid to call yourself intersex if the diagnosis you have isn't on one of the standard lists of intersex diagnoses

It's valid to call yourself intersex if your intersex variation wasn't evident at birth (most aren't!)

It's valid to call yourself intersex if your intersex variation was one where puberty Did Not Go To Plan

It's valid to call yourself intersex if you have totally ordinary genitals

It's valid to call yourself intersex if the only signs that you're intersex show up on lab tests/imaging and otherwise there's no way somebody could tell from looking at you

It's valid to call yourself intersex if you never had any coercive medical interventions

It's valid to call yourself intersex if you identify your sex as male or female (we are not a third sex!)

It's valid to call yourself intersex if you don't look like how white people with your intersex variation look

It's valid to call yourself intersex if you only found out through freak happenstance as an adult

It's valid to call yourself intersex if you think you were misdiagnosed

It's valid to call yourself intersex if no doctor ever told you you're intersex

It's valid to call yourself intersex if your doctor(s) dispute whether your diagnosis counts an intersex condition (it's not up to them!)

It's valid to call yourself intersex if you feel your intersex variation is a health condition

It's valid to call yourself intersex if you don't like the way you look

It's valid to call yourself intersex if you do like the way you look

It's valid to call yourself intersex if you started your questioning as part of a gender journey

It's valid to call yourself intersex if you started questioning to figure out trauma from your youth

It's valid to call yourself intersex if you started questioning to find other people like you

It's valid to call yourself intersex if you started questioning your intersex status just because you wanted to know

FINAL NOTE: you don't need to be 100% certain you're intersex to start finding, following, and getting involved in intersex spaces. People will understand if you're questioning, and it's the best way to find out if the label fits you! <3

[hiiragi7]

@blaugrana-blues People say this about any intersex variation. Just how "different" do we need to be in order to be "intersex enough"? Do we need to all be true hermaphrodites to "count"? Do we all need to be infertile? Where is the line to you?

Are people with CAIS and persistent mullerian ducts who can still have children no longer intersex? Are people with C-CAH who do not present with ambiguous genitals at birth no longer intersex?

Why are you so hellbent on turning intersex people into some mysterious foreign group that you can't conceive any ""normal"" person being a part of?

Aside from many intersex people not showing obvious physical signs, aside from PCOS and NCAH and various other adrenal disorders having so much symptom overlap you cannot visibly tell the difference without testing, aside from PCOS itself being widely misused currently by the medical field and constantly inappropriately diagnosed upon the first meeting with a hyperandrogenic patient without even doing any testing at all when it's meant to be a diagnosis of exclusion, aside from PCOS not always meaning "just extra hair" - Why does it hurt you for people to identify as intersex?

Why is it so much of an insult to you to be lumped in with us that you felt the need to comment this on my post?

You also do not have to identify as intersex if you do not want to, but there is absolutely no need to drag down others who do just because you felt personally attacked by a post aimed at intersex people with PCOS.

I am also going to link you three studies/reviews about PCOS and just how much overlap it has with other intersex variations so you can see how pointless it is trying to make a distinct difference between the lived experiences of those with PCOS and "The Actual Intersex People" because I am tired and I hope you will read these if your question was actually in any sort of good faith.

Relative Prevalence of Different Androgen Excess Disorders in 950 Women Referred because of Clinical Hyperandrogenism

Polycystic Ovary Syndrome and NC-CAH: Distinct Characteristics and Common Findings. A Systematic Review

Differentiating Polycystic Ovary Syndrome from Adrenal Disorders

Regardless of the cause, if you are visibly not within the "socially acceptable" sex binary, you're going to get treated like shit. There is absolutely no reason to want such drastic seperation between PCOS and the rest of the intersex community, we need to work together against oppression and discrimination, not apart.

[genderkoolaid]

advice on how to get over the fear that t is going to make me ugly? or that i’m going to miss “the old me”

i’m a queer trans guy and i’ve been questioning going on t for years now and i know i definitely want bottom growth, body fat redistribution and more body hair.

but im err on the side of face and voice changes. i’m scared of disliking my new voice and suddenly growing dysphoric over it (i dont have too much voice dysphoria now) and disliking how my new face will look. i’m kinda genderfluid as well so it’s complicated. but i don’t want to go my whole life without knowing what it’s like to be on hrt. but i can’t get over the fear of looking/finding myself ugly and undesirable and losing my community... which is ironic cuz i find other trans men attractive as hell. i discussed this in therapy and i still feel this way :/

i wish there was a way for me to start without telling anyone and then breaking the news when i’m experiencing changes and feeling more confident about it. i have my gender dysphoria diagnosis and i can start if i want to, but i need my family’s financial support. i don’t want to make it a big deal since it’s just something i’d be trying out to feel more like myself in certain ways.

sorry this turned into a long ass rant and you don’t have to reply but i’m just gonna kindly leave it in the ask box 💀

There's a post that goes like "all of life is irreversible. i cannot go back a single second" and I think thats something good to keep in mind when you are thinking through this. You are already living with a body that has changed and will continue to change in ways largely out of your control. You are already living in a post-irreversible-alteration body.

If you do go on T and find you don't like how your voice sounds: for one, you can stop at any time (& if you haven't checked out microdosing as an option, you should). But two: plenty of people live with a deeper voice than they want. Plenty of people live with facial hair they dislike. You can pursue the same therapies and procedures they do. Or maybe you don't, and you find ways to live with a voice or face you aren't totally in love with.

So much detransition fearmongering, especially directed at transmascs & assoc. trans people, heavily relies on the specter of the fallen woman, itself steeped in trans-misogyny & intersexism. The idea that, for one, a "woman" who has mixed-sex features is ugly and undesirable, and two, that a "woman" made undesirable is forever doomed to be miserable and worthless. The transphobic story of detransition keeps our bodies stuck in this moment of revulsion and regret, narratively preventing us as characters from being able to move on and live happy lives in atypical bodies. Even if you do regret/dislike some things about T, you are not forever stuck in that feeling. The story does not stop at that! You will just keep living and find new ways of dealing with your bodily feelings!

The social aspect of this is a bit more complicated but I also have some firsthand experience with it. Because, as mentioned before, there's a lot of transphobic misogyny/misogynistic transphobia that affects transmascs & others who go on T, who have to confront the feeling of losing your potential desirability. And then there's also the way many people are treated after going on T, facing a whole new area of bodily scrutiny: you may suddenly have people making comments about how someone needs to force teenage boys to shave because their facial hair is a personal offense. I went from being self-conscious about how high my voice was to being self-conscious about how undeniably trans my voice was. And, specifically, my facial hair, voice changes, etc. were all signs of my transmasculine desire, and I became self-conscious about how obvious it was that I desired being trans, I desired this body. I could no longer let everyone pretend I was a cishet girl at family gatherings and avoid confronting these issues, because I had essentially written I WANT TO BE A TRANNY all over my physical form.

This is something I'm still struggling with myself. I, like many other queer & autistic people, already struggled with feeling desirable or worthy of being seen alongside conventionally attractive cishet people who could act normal. Being visibly trans, and taking a huge step away from the desirable cis-perisex-girl body, can really open up that can of worms. Especially being genderfluid/genderqueer! Because we often cannot find a comfortable space for ourselves within the conventions of attractiveness for cis men, like some binary trans men are able to.

But ultimately, I don't regret going on T at all. I would have had body issues regardless, and I got a lot out of going on T. I think mentally preparing yourself to struggle with these things, and seeking out other transmasc people, is a big help. Again: all of life is irreversible. we cannot go back a single second. We are already living in imperfect bodies we struggle to love or see as worthy. If you know you want some of the things T can offer, and you don't want to go your whole life without knowing, then just do it. Dive in, and don't feel any shame if you decide to get out. Just keep living and finding ways to live better right now.

[trans-axolotl]

okay making a separate post bc i don't really want to get into any drama but like.

idk. intersex is such a broad umbrella term!! there's many ways we have overlap in our experiences. all of us are impacted by intersexism. all of us are impacted by compulsory dyadism.

it's true that there are many of us who don't fit into dyadic ideas about cisness or transness. like, for example idk if i would ever call myself ftm. like i was assigned nothing at birth for about a week and then eventually assigned female at birth and then i went through a testosterone based puberty naturally and then was put on estrogen and anti-androgens and started growing a chest and then went on testosterone got top surgery and then and then and then. anyway its like i am an intersex trans man but im not female to male, im not a dyadic trans man, i don't resonate with endosex transition timelines whatever whatever whatever. but my identity as trans is important to me, whatever.

i know many intersex people who don't see themselves as either cis or trans and just identify as intersex. i know many trans intersex people who it's complicated. i know many cis intersex people who identify as cis but it's complicated. so i don't feel like i would ever say like "oh all cis intersex people experience this thing" or "all cis intersex people have this social location etc etc etc" "All cis intersex people don't experience this kind of discrimination."

but at the same time i am SO tired of seeing ppl make umbrella statements that are like "this thing applies to all trans intersex people" "this thing applies to all cis intersex people" and especially when it comes to saying that all cis intersex people don't sometimes have cis privilege in certain contexts or that cis intersex people can't be transphobic.

bc idk after studying the past 30 years of american intersex activism for my thesis one of the things that CONSISTENTLY jumps out to me is the tension between queer intersex community, and medicalized intersex community that is almost exclusively cis. like so many of the dsd organizations, throughout their past 15 years, have EXPLICTLY made comments disparaging other intersex organizations, calling them too militant, saying that they're ruining the intersex community because they ally with trans people like. all this transphobic bullshit. the dsd organizations today still use very gendered language, let radfems do fucking whatever in their organizations, advocate for surgery and so much other bullshit. like that actively harms trans intersex people especially in a situation where we have such limited resources. there are SO few resources for our specific diagnoses. like if i need medical information for my specific variation, if i need information on like, medication routines, genetic testing, complications, comorbidities, etc etc etc, i HAVE to go to a transphobic organization to get those resources. because there is literally not another diagnosis specific organization that exists! it's the only one! and it means that there are so many more barriers to me accessing the resources, community, and care that i need. because of transphobic intersex people. like. thats an example of how some cis intersex people really cling to their cisness, try to weaponize their cis privilege, and actively cause intracommunity discrimination. you know?

like. idk. i just think that we need to be realistic! in terms of intersex intracommunity things, there absolutely is a lot of transphobia! not from everyone, not saying that every intersex person is either cis or trans, with the understanding that every cis intersex persons experience is still shaped by compulsory dyadism and that shapes how we're viewed as our "real" gender or ways that society thinks we "fail" at our gender but just.

im tired! im tired.

[studywgabi]

Anyone Else?

I am 18 years old and I just found out I am intersex.

I started puberty at an earlier age than average. I had severe acne, oily skin, and hirsutism in second grade. I remember my dad telling me to wash my face because I was getting "a type of pimple called a blackhead" (he had to explain to me what it was, I had never heard of them) when he dropped me off at before-school daycare at 7 years old. When I told my mom I had hair under my arms that same year, she flat-out refused to believe me. She simply said I did not, that it was impossible.

I started shaving my legs in third grade, after begging my parents to let me for a year. My mom said I should only have to shave every other day, and again denied the truth when I told her that wasn't enough. Once I started shaving my legs, I noticed the hair everywhere else: my back, my chest, my face, all over.

I googled my symptoms over and over, scouring the internet for a documented experience of any other woman who was like me. I questioned my gender identity over the years. I had wondered if it was possible for me to be intersex, but I had a very limited view of what that could mean, and I assumed if I was, it would be very physically, externally, obvious. At that time, I didn't think it was possible for my doctors, my parents, and everyone else in my life to miss something so important.

For about a year, I identified as non-binary and used they/them pronouns. I think that part of this came from a place of being young and exploring my identity, but it also came from deep insecurity. I didn't feel like being a girl was an option for me because of the way I looked, so I thought it would ease my pain to pretend I wasn't a girl. I want to make it abundantly clear that I am in no way saying questioning one's gender identity is only about being insecure. That was my personal experience, and I am in the minority. I am the exception to the vast majority of experiences.

I bought plain, solid-color, clothes 3 sizes too big and wore pants and long sleeves all summer to swallow me up. I always wore my hair down and I always had bangs to cover as much of my face as possible. I wanted to make it impossible to see my face at all, and, between bangs, glasses, makeup, and a mask, I was fairly close.

By the time I was 12, I had developed a four-hour daily routine for removing all my hair. After a year of seeing my therapist, I finally broke down and told her about my hirsutism via pen and paper and through tears. I was so, so ashamed that I couldn't even say the word "hair" out loud. She immediately told me I might have PCOS, something I had never heard of, and it turns out she was right.

It was only recently, six years after my PCOS diagnosis, that I found out there was any discussion at all about PCOS being considered an intersex condition. I am ashamed to say my first reaction was one of more fear and insecurity. I have been chasing womanhood all my life, and this felt like yet another barrier to it. Even if I didn't identify as intersex after reading about this, it's taught me I have quite a bit of unlearning to work on.

I am in no way qualified to declare PCOS to be an intersex condition, and I am not telling other people with PCOS that they have to be intersex, but I now identify as intersex. I love that PCOS awareness is a trending hastag on tiktok, but there is still so much more research that needs to be done, especially into this particular area. I read peer-reviewed journals from scientists and blog posts about individuals' real experiences and I found a term that feels like home for me, that fell in line with the way I had always felt about myself. I will still use she/her pronouns, because they also feel right for me.

When I experience things like this, I don't know what else to do but write about them. I hope we learn more about this, and I hope I can talk to someone who has also had this experience. Thank you.

[intersex-support]

i've recently been doing a lot of research into intersex conditions ((to be better knowledgable and supportive of a good friend who is intersex)) and i heard about turner syndrome. and the more research i do, the more i think i might have it ((particularly Mosaic form TS))? i have many of the most common symptoms ((very short stature ((4'9 at 15)), small lower jaw, shield chest, very mild lymphadema, low hairline down the back of the neck, very irregular periods ((i have about 3 or 4 periods a year, ever since starting my period)), high/arched palate, lots of moles, and probably some smaller stuff i forgot abt)) would it be worth it to bring it up to my doctor and get tested? expecially if i don't want to receive feminizing hrt. i don't have any other health issues really, so would that just be stealing testing and/or resources from those that really need it?

Hi anon.

usual disclaimer that we can't give medical advice or diagnose.

It makes sense why you would be curious about turners/mosaic TS after looking into the symptoms and seeing that they seem to line up with some of your experiences. And I think that Turner's is one of the intersex variations that it can be important that if you're suspecting you might have it, to actually try to seek a diagnosis if possible.

This is because there are a lot of other health issues that are associated with Turners that can develop at any time in your life, including heart problems, kidney problems, osteoporosis, scoliosis, and sometimes diabetes. Even if you have Turner's, that wouldn't automatically thing that you would also have these other issues, but it would mean that you would be at higher risk and that you might want to undergo different types of monitoring throughout your life. I don't want to scare you unnecessarily because I know plenty of people with Turner's who don't have other health complications, but it is a significant enough associated risk that I think it can really be worth trying to find out that information about yourself if you have other reasons that you're suspecting Turner's.

You wouldn't be stealing testing or resources away from other people--there isn't a shortage of testing in that way. The main obstacles to getting testing and care for intersex people is more due to discrimination and uneducated doctors, rather than a resource shortage. In terms of getting forced on estrogen, you always have the right to deny treatment that you don't want, and to explore alternative options if there's a reason you need some type of hormones for your bone health.

Of course, it is always, always up to you whether you want to try to seek a diagnosis or not, and you'll be the expert on whether this feels like the right thing to do at this point in your life or not. I just wanted to provide some reassurance that you wouldn't be overstepping, and share some of the reasons why Turner's is an intersex variation where a formal diagnosis might be more important.

Please feel free to reach out again if you have any other questions or need any support--this blog is here for you!

[guqqie]

wait holy shit you have pcos too? i have seen exactly one person other than me have this variant, it's so cool to know someone i look up to also has it! to the pcos crew! (ps did you know pcos is an intersex variant? thats how i found out abt it to get my diagnosis! /ramble)

yeah i have PCOS!! i got officially diagnosed almost a year ago and have been on medication to help regulate it since! it can really suck sometimes though, and i plan to do a whole stream just talking about it in depth and how it’s effected me and my life! gotta let more people know about the PCOS crew :)

ALSO NO I DIDNT KNOW!! i need to do more research on that but it is cool that pcos falls under the intersex umbrella! :D

[rurustims]

hi everyone! my name is ruru or cami both names are all okay to use, and i also use other names so you may ask about those. im pretty new to Tumblr and it's functions so be patient please!

★ — some things about me!

im high support needs / level 3 Autistic with an intellectual disability. i understand and process language, different levels of language very differently please be understanding.

i have many disabilities and disorders! please be mindful, respectful and patient. HSN Autistic, ADHD Combined Type, Mild Type of Visual Impairment, learning disabilities, Intelectual disability, on the Schizophrenic Spectrum and ect.

i have hEDs, chronic fatigue syndrome and chronic joint pain.

i am semiverbal, ive got a speech impairment and met the milestone of spoken language late. im generally a part time AAC user.

im very queer! im intersex and identify as a nonbinary cistrans transgirl and many other things, especially xenogenders. you may use shi / kid / pie pronouns for me on the most part!

i belong in the alterhuman community, i am otherkin, fictionkin, otherhearted and the like, i have made a small write up regarding my nonhuman identifiers so i might share at some point!

im a future wheelchair user and mobility aid user, as of current moment i am unable to use these.

★ — what will this account contain?

on this account i will be sharing stuff regarding my disabilities and disorders followed with generally my experiences. i will talk about my day, my interests and the like. i do have political opinions (im a leftist) however i wont very distinctly and strongly talk about politics here.

★ — what are my "stances" / beliefs?

i support all queer individuals, no matter if ""contradictory"" identity or not. i identify as a pansexual lesbian myself.

i support all types of plural folk and i will not engage in system discourse. i am not going to debate what's going on inside someones brain and life.

i support informed and educated self diagnosis.

i dont care and wont be involved in-depth of queer discourse, system discourse or ship discourse. i think it's extremely unnecessary and waste of time and brain power.

read on more below!

★ — my special interests, hyperfixations and hobbies

my main, or well? biggest special interest has been my little pony friendship is magic. ive had this special interest for around 10 years now!

my other special interest is autism and ive had this special interest for about 5-7 years i think.

as well as Adopt Me, a game on roblox, for about 5 years now.

★ — about my hyperfixations!

i have and had many hyperfixations really which some do come back and fade out!

some of my hyperfixations in the past have been : breaking bad, the amazing world of gumball, tokio hotel, cookie run kingdom, isopods, snails, heartbreak high, future man and avatar the last airbendender. these are just some of the examples i could think of!

★ — what are my hobbies?

watching east asian dramas of crime, horror and action genre.

collecting toys

collecting manga books

★ — tags i might use!

#rururant — not particularly venting, but could be, sharing some type of negative feelings and emotions towards something.

#ruruspinterest — this is when i talk about my special interests but could include hyperfixations. depending on the amount i post i might consider another tag for hyperfixations. edit: decided to have a separate tag

#rurusharing — this is just my general tag i might use to when im just talking about my day and stuff i will see.

#rurufixates — for mention of hyperfixations!

hi everyone! to those who already read my pinned post beforehand, my apologies, please dont be too confused! i just updated some things. thank you for reading!

updated on! (MM/DD/YYYY) 08/04/2024

[froggiebi-moved]

i swear nothing has been so validating and helpful to hear than other intersex people with pcos explaining that they had an alternate puberty than what we were taught to expect - because i did, too.

the first sign i had that i was entering puberty was the development of acne at age 8. even as a kid i knew how weird that was, as everyone around me still had nice, smooth skin, while i was the kid in the photographs covered in red bumps. it was humiliating.

as i travelled further into puberty, my boobs and body hair developed as expected, though the boobs got way too big too fast, and the body hair was patchy (but at least easier to maintain). my hips developed, too, but i always felt more top heavy due to the growth of my boobs, as well as the fact that my body type already had a longer torso and big tummy, the latter being a very common pcos thing. i had also been tall until i suddenly stopped growing at 14, giving me a squarely average height and dooming my legs to be forever short. i'm not kidding; at 11, i was about an inch shorter than i am now. i grew a measly 3cm in as many years, and that was it for me. i am now 164cm (5'4") despite my parents and all my siblings being taller.

as a teen, i tried to focus on how i was just like the girls now, how we shared this commonality (even if i had extreme dysmorphia from my body developing somewhat differently), but i couldnt help but be preoccupied with the state of my skin. i noticed the boys were not only more likely to have acne or to develop it early, they were more likely to have severe acne than the girls. my acne began to spread over my chest, shoulders, and back, and some zits were particularly painful and/or itchy. i didn't have cystic acne, but it was mild to moderate on almost every inch of skin down to my armpits. i thought of myself as a monster, fated to be the ugly, overlooked friend, the weirdo who couldn't get a boyfriend as they kept having crushes who didn't like them back - fairly typical teenage concerns to be sure, and one that i couldn't even express as different to my peers' as we were all hormonally haywire. even my irregular periods and heavy cramping seemed normal, because it was hard to find a teenage girl without a single experience of irregular periods and heavy cramping.

all the girls talked about using proactiv, clearasil and neutrogena to battle their pimples, and i tried what my mother was willing to buy for me, even dicey balms she found on ebay, but nothing helped; not until i went on the combination pill at 16. until then, i understood the boys who straight up pretended they didn't have it because either nothing worked, or there was nothing socially acceptable they could do about it - what millennial teenage boy would ever wash their face with specialised soap? don't worry boys, because i tried it, and it didn't do shit; the pill, however, was like a miracle cure. it didn't clear my acne up 100%, but it got better by at least half, and the redness calmed down. my face now seemed just as pimply as most other 16 year old girls, and i couldn't be happier.

i wasn't diagnosed with pcos until i was 19, after a decade of suffering and hating myself and questioning what was wrong with me and begging my mother to take me to a specialist. she even told me that as a teenager she only got pimples when she was due for her period, but didn't make that same hormonal link for me because i had pimples all the time. the constant dismissals and blaming, the shit like "you just need to be more hygienic! here, put toothpaste on your skin!" - it was all infuriating, and only succeeded in bringing my self-esteem down further.

the diagnosis helped a lot with helping me let go of a lot of the self-blame and shame i developed alongside my symptoms, but as an adult i have had other associated issues. since giving birth to my son, i have been growing facial hair that steadily became more and more noticeable, and it now has to be removed every week or so - just like my body hair, it's patchy, so i can get away with leaving it for a few days, despite it growing at the same rate as a typical beard. pregnancy changed my body and made that "topsy turvy" feeling even greater, as my bust is now far larger than my hips, despite women's clothing accommodating for the opposite. (though to be fair, this is also genetic, as my mother was more top heavy than i am; it's just another factor in the struggle of accepting my body.)

on top of all that, i have been struggling to understand my gender for the last decade, coming to the realisation i am nonbinary but itching to know what "flavour", trying on a bunch of different labels (mostly multigender ones that hover around agender), knowing i had dysphoria but not really understanding how as it differed to most accounts told by afab people. due to how my hormones work, as well as my nebulous dissatisfaction with my body, i figured i had to be a transmasc, or at least equally masc to fem. however, the more i heard trans women's stories pre-transition, the more i realised i could relate to them, and that i was doing the same thing - trying to conform to what i felt i had to be, though for me it was more that i didn't feel "womanly" enough to deserve being called one, despite wanting to be involved in the collective of women. trying to pigeon hole myself as transmasc or even completely agender wasn't realistic for me, and the reason my dysphoria was so great was because i wanted to be fem and to feel that i fit in - with women.

this whole confusing journey has been aided by my making the connection between dysphoria and pcos, finding out pcos is considered an intersex condition by the intersex community, being acceped into the community, and growing to understand just how complicated gender can be for us; i'm far from the only intersex person in this boat, despite sailing in it alone for quite some time. i've been calling myself a nonbinary woman / agender woman for a while now, and it feels right, even if it seems counterintuitive to perisex people. but i'm done trying to make myself palatable for perisex people, especially perisex cis people. i am intersex, and nonbinary, and a woman, and the "nonbinary" part modifies the "woman" part, and the way in which i am nonbinary and a woman is further influenced by my intersex status and bisexuality. and all of that is okay.

we are who we are, and when you have a community behind you, it'll quickly absorb the limitations you've put on yourself all your life. i see that now.

*terfs do not fucking interact*

[autismaccount]

I've reached 499 responses to my survey from Tumblr, so I wanted to give an update! I'm still injured, so I can't type enough to make posts for each support needs level, but I wanted to let people know where the survey is at all overall.

Thank you to everyone who's participated so far! I'll keep the survey open for a bit longer and then do analyses as soon as my hand/arm feel better. I'll also use graphs/charts to compare some key statistics across support needs levels (e.g., frequency of needing support for people who are low vs high support needs). If anyone hasn't taken the survey yet and wants to participate before it closes, the link is below.

As a reminder, the survey is meant to understand how people use support needs labels. For example, what makes someone low support needs and not moderate support needs? The survey also helps show what the community is like in general in terms of demographics and experiences!

Current summary:

Age: Most participants are young; 76% are under age 26, 51% are under 22, and 29% are under 19.

Gender: The largest gender/sex group is AFAB nonbinary (44%) followed by transgender men (34%) and distantly followed by cisgender women (15%). Assigned male at birth people are severely under-represented, with only 2% transgender women, 2% cisgender men, and 1% AMAB nonbinary. 2% of individuals responded that they're intersex.

Race/Ethnicity: Non-Hispanic White people are over-represented, making up 72% of the sample. Minority groups include Jewish people (10%), Asian people (6%), Hispanic or Latino/a/e people (6%), Black people (5%), and Native/Indigenous/First Nations people (4%).

Diagnosis: 52% are professionally diagnosed, 22% are informally or soft-diagnosed, and 10% are seeking a diagnosis. Only 14% are neither diagnosed nor seeking a diagnosis. 2% have an autism special education label instead of a diagnosis.

The most common diagnoses are ASD with no level (49%) and level 1 ASD (19%). There is a severe underrepresentation of level 2 (9%) or level 3 (2%). 1% have a split level diagnosis (1/2, 2/1, and 2/3).

12% of individuals were historically diagnosed with mild autism, 6% moderate autism, and 2% severe autism. 28% were historically diagnosed with Asperger's syndrome, 20% high functioning autism, 5% classic autism, and 4% PDDNOS.

15% were diagnosed before age 8, 34% between ages 9 and 15, 21% between ages 16 and 18, 23% between ages 19 and 25, and 7% over age 25.

Autism Support Needs: Self-identified support needs strongly trended low. 9% identified as very low support needs, 36% low, 28% low-moderate, 12% moderate, 3% moderate-high, and 2% high.

2% said their support needs change too often for them to give a level, 3% don't use support needs labels for other reasons, and 4% weren't sure their support needs.

The most common reasons for identifying with this level of support needs was intensity or type of support needed (82%) or frequency of support needed (68%). Other common reasons included intellectual or verbal ability (29%) or the community that seems like the best fit (26%). Only 10% based their support needs off of their DSM-5 level diagnosis, 9% off of professional opinion, and 4% off of their type of autism diagnosed (e.g., high functioning autism). 8% said their level changes too frequently to give an answer, and 7% weren't sure.

In general, most thought that support needs levels should be based off of intensity or type of support needed (88%) or frequency of support needed (83%). Other common reasons included intellectual or verbal ability (32%), professional opinion (19%), community (15%), or DSM-5 level diagnosis (13%). Only 5% thought it should depend on type of autism diagnosed (e.g., high functioning autism). 10% said levels change too frequently to give an answer, and 9% weren't sure.

Most would benefit from but do not need weekly support (39%), only need accommodations and mental health support (17%), or rarely need any support (4%). A minority need weekly support to survive (15%), would benefit from daily support (14%), need daily support to survive (9%), or need support for all waking hours or 24/7 (2%).

The tasks respondents were most likely to need support with included cleaning (91%), communicating with professionals (82%), planning (82%), managing health (71%), navigating the community (65%), and shopping (65%). Most could independently toilet (84%) and manage grooming (53%).

On a severity scale of 0 (can do independently) to 3 (cannot do at all), the average help needed for each domain is 0.88, indicating a need for some support at least some of the time.

Autism Symptoms: On a severity scale of 0 (not applicable) to 3 (severe), the average autism symptom severity is 1.7 overall, 1.6 socially, and 1.6 for restricted-repetitive behaviors. The most severe symptoms are sensory issues (2.0) followed by restricted or intense interests (1.8), and the least severe are nonverbal communication (1.5) followed by socioemotional reciprocity (1.6).

87% are fully verbal, 10% are part-time AAC users, and 3% are full-time AAC users. 6% have receptive language impairment, and 9% have expressive language impairment.

2% have borderline intellectual disability, 4% have mild intellectual disability, and 1% have moderate intellectual disability.

13% can mask well enough to pass as neurotypical. 9% can mask well but only briefly. 42% can mask well enough to seem "off" but not necessarily autistic. 18% can't mask well or for long. 6% want to mask but don't know how, and 5% can mask but deliberately don't. 7% don't understand masking.

Most experience shutdowns (83%), difficulties with interoception (71%), alexithymia (71%), meltdowns (68%), autistic mutism (65%), and echolalia (63%). Very few experience psychosis (24%), aphantasia or poor visual ability (23%), poor theory of mind (22%), or catatonia (19%).

Changes: 45% have experienced their autism symptoms getting worse, primarily due to burnout (28%), trauma (23%), puberty (19%), or regression (13%). 11% experienced temporary burnout, and 23% have struggled more due to increased demands or stressors. 21% aren't sure.

32% said this did not change their DSM-5 severity level, 19% said they moved from level 1 to level 2, 1% said they moved from levels 2 to 3, and 1% said they moved from levels 1 to 3. 1% had been formally reassessed to confirm this change, and 1% were in the process of being reassessed.

38% have experienced their autism symptoms getting less severe, primarily due to an improved environment (25%), naturally with age (14%), or medication (10%). A small number attributed their improvements to masking (9%), intervention (7%), puberty (2%), or gaining access to AAC (2%). 11% said their symptoms temporarily improved in a supportive environment. 24% aren't sure.

31% said this did not change their DSM-5 severity level, 5% said they moved from level 2 to level 1, 1% said they moved from levels 3 to 2, and 1% said they moved from levels 3 to 1. 1% had been formally reassessed to confirm this change, and 1% were in the process of being reassessed.

Self-Diagnosis: 27% think it's always fine to self-diagnose autism, 34% think it's almost always fine, 40% think it's only okay if an assessment is inaccessible, 66% think it needs to be done carefully, 9% think it's okay to suspect but not self-diagnose, and 1% think it's never okay.

16% think it's always fine to self-diagnose autism DSM-5 levels (including if the person has been told they don't have autism), 19% think it's fine as long as autism hasn't been ruled out, 23% think it's almost always fine, 34% think it's only okay if an assessment is inaccessible, 57% think it needs to be done carefully, 17% think it's okay to suspect but not self-diagnose, and 3% think it's never okay.

24% think it's always fine to self-diagnose autism support needs labels (including if the person has been told they don't have autism), 28% think it's fine as long as autism hasn't been ruled out, 30% think it's almost always fine, 33% think it's only okay if an assessment is inaccessible, 57% think it needs to be done carefully, 7% think it's okay to suspect but not self-diagnose, and 1% think it's never okay.

Disability: 71% feel disabled by autism, 14% feel disabled by another condition but not autism, 4% don't feel disabled at all, and 11% are unsure.

Comorbidities: The most common mental health comorbidities are anxiety (75%), ADHD (62%), and depression (60%). Honorary mentions are PTSD (41%) and dissociative disorders (32%).

The least common mental health disorders are substance use disorders (4%), bipolar disorders (7%), schizophrenia spectrum disorders (9%), tic disorders (12%), and personality disorder (19%). 5% have no mental health disorders.

The most common physical health comorbidities are gastrointestinal issues (34%), connective tissue disorders (29%), neurological disorders or injuries (26%), and musculoskeletal disorders or injuries (20%). All others are below 20%. 2% have no physical health disorders.

Overall Support Needs: When considering comorbidities, support needs trend moderate. 7% identified as very low support needs, 24% low, 33% low-moderate, 25% moderate, 8% moderate-high, 3% high, and 1% very high. No one reported that their overall support needs change too often to say, that they don't use overall support needs labels, or that they don't know their overall support needs.

[queercripintersex]

I don’t know if this is ok to ask you, but I’ve been questioning if I’m truly intersex, or having doubts really. I’m not well educated on my medical past. All I know is that I was born with mutations in my urinary system and the doctors told my mom that I’d have much more testosterone than the girls around me. They offered estrogen but my mom declined. I did end up having a deeper voice and being much hairier, but is that enough? Do I have to know my condition?

My stance on questioning if you're intersex is to try on the label, follow intersex people & join intersex communities and see if the label sticks. Do you vibe with other intersex people and our experiences of having bodies that don't fit with what society expects bodies should be?

I personally don't think a diagnosis is needed to claim intersex as a label. And there's a bunch of reasons for this: I think it's important to resist the hyper-medicalization of intersex, and it's also important to appreciate that so many intersex people have medical trauma that accessing care to find an appropriate diagnosis just isn't worth it for many people.

There are also people in countries like the US where access to health care is paywalled to an extent that expecting a diagnosis is outright classist.

The question of whether diagnosis is necessary comes up with some regularly, so here are some other asks answered by other intersex folks on tumblr for a more comprehensive answer: - genderpunks' take - intersapphic's take - mod E of intersex-support's take - hiiragi7's take

Hope that's helpful!

[pro-anomalocaris]

Pinned Post Time

He/him Seth or Set or Setka or Jean-Set. I have a lot of nicknames ADHD haver/survivor (depending on your POV) Over 18 Jewish (Bukharan) Linguistics + Religious Studies double major, on accident In order to answer the "are you white or not" question we need to discuss the construct of whiteness as it applies to Central Asia in your country of origin and frankly neither of us has time for that.

Fandom stuff would normally go here but I bounce from fandom to fandom. I don't believe in shipping only one thing and I think calling yourself "a Zutara" or "a Reyfinn" or whatever is ridiculous. It's internet Barbies, not a religion. It's not that serious.

DNIs get ignored but for the record, I'm pro-MOGAI, pro-endo, pro-trans, pro-intersex rights, pro-self diagnosis (even if you don't get it right, turning to your provider and going 'I have the following symptoms' is useful), pro-whatever group of lesbians is getting dragged on tumblr today be they split attraction model users or ace or bi lesbians or what have you, radical inclusionist, anti intersexism and medical abuse, anti biological essentialism, you don't need dysphoria to be trans, respectability politics are worthless, men aren't inherently evil actually, pro-interracial couples because no matter what antis say people are equals actually, and pro-kink.

If you think legal = moral and illegal = immoral, you are wrong. There are four states in the US where you can marry a minor at any age as an adult and have sex with them. That is legal. That is immoral. There are many countries where being queer is illegal. It is illegal and moral. Appeal To Legality is a logical fallacy that refuses to acknowledge anything could be wrong in the legal system. I should not have to explain to you why that's an incorrect statement.

Black Lives Matter. Stop Asian Hate. Missing & Murdered Indigenous Women deserves more attention than we're giving them. ACAB. Never Again Is Right Now. Hamas is a terrorist organization and Palestine deserves to be free from them as much as it deserves to be independent, and if you excuse Hamas committing rape, child rape, and murder, you are not pro-Palestine, because Palestinians have condemned those acts and frankly, everyone should.

Death threats, rape threats and suicide bait are always bad. They further drive people into extremism when you do it to extremists, they harm people in any scenario, and they reveal to me that you never wanted to be a good person, you just wanted to be cruel in a way that you can excuse as being 'good'. You're not good. A good person does not do these things.

If your discussions around mental health involve demonizing people who are low/no empathy or treating people with psychosis as evil, please know you are displaying no empathy and being evil. And I find that genuinely sad, but I am also going to block you.

Sometimes I'm ignoring you. Sometimes tumblr genuinely eats asks. I have asks on my main that have been there, hovering, invisible, for a year. I don't know why. But also sometimes ADHD kicks in and I mean to reply and for that, I apologize.

If you start a conversation, you do not get to cry about people replying to what you posted publicly where anyone could reblog and reply. Pretending people are "harassing" you for replying is either an attempt at using language to manipulate the situation or a sign that you are highly immature even for a minor.

If you use the "haha me no read reading iz bad lmao" excuse, you have forfeited all right to being taken seriously, not just by adults, but by children. You are also going to be incredibly easy to manipulate by everyone around you due to your inability to read with comprehension. I pray no one uses this to abuse you, but I'm also going to block you, because frankly, I don't know how to help in this situation.

I have had an anti send me CSEM in the past to "punish" me for writing a romance between a 50 year old and a 56 year old. I reported them to the police. They are now serving 30 years for possession of CSEM and if you try anything similar, I have no problem doing the same to you. (If you're wondering why I don't believe antis when they say they're protecting kids, this is why.)

Depiction isn't synonymous with endorsement. Shipping isn't activism. Fandom isn't activism. One real person is worth the death of every blorbo you and I hold dear put together.

[amberlin1]

Including PCOS having people is a dividing issue for the intersex community apparently

I am AFAB. I quite like having tits and a vagina. I have hirsutism and zero periods without a bcp, and a body that felt like it betrayed me for a longass time. In my teens and 20s i had a lot of gender dysphoria, which felt really strange and uncomfortable to me, to be feeling the same thing mtf trans people were feeling (they were the only type of trans people in the media that i was exposed to)

I realised, when i realised i was bi, a lot of my identity issues went away almost immediately. It became a who-cares deal for me 20 min after me realising im queer. It's strange to say that it was freeing for me, after being raised new testament pentecostal, where i didnt actively feel like i was hiding. Religiously i didnt feel it, but it did overlap into the social aspect, where i felt it through sex, gender identity ,and gender expression.

PCOS made it so i never had a period for long stretches of time, until eventually without a bcp, i'd never have one. At one point, i'd go for 9 months without a period. I went for an x-ray and had to tell the tech when my last period was. 9 months. And i'm wearing the uniform for a prestigious secondary school. (I wasn't pregnant, i just have a shit body)

I largely kept to myself and never made additional connections with people, and romance was out of my head (for a lot of reasons, but this was one). i hated to show my face anywhere (difficult). I tried so hard to be feminine like i was as a child, and when i saw i couldnt i went the other direction. It was exhausting. I stopped. But i still kept largely to myself. But i kept trying to overcorrect this mistake. Im not a trans woman, i'm cis, so why do i feel like this? Why is this the way i feel? Why do i look like this?

I remember my mother asking me why i need to have birth control if im not having sex, and i'm not going to, cuz i don't have a bf. I told i feel like i need to to feel like a woman. She laughed at me. That was a stupid reason and it's a waste of time. I left it alone after that. For the rest of my 20s the same questions kept coming up, along with my (weak) rebuttal. I'm not trans, i'm cis. I just have a shit uterus.

In 2020 during lockdown, with no customer service work, and a lot of time on queer tiktok, i finally brought back up the question of my sex and gender identity and expression.

I remember a tiktok user saying they see themselves as intersex because of their pcos diagnosis. Its been like 4 years so details are lost, but from what i remember, because hormonally their body doesn't do what afab bodies are expected to do, they consider themself intersex. I played around with the idea but intersex as a label isn't mine.

I'm still consider myself pretty femme. In tastes and expression. But. There is a BUT.

As i say, I don't consider myself intersex. For physical or hormonal traits that i have. I don't think the label fits for me at all. It may for some people. That's okay, and i'm happy there are people in the intersex community accepting and welcoming PCOS havers with them.

I mentioned a BUT.

I can't see myself as intersex or trans.

I do like my default body.

I sometimes feel like i can have more. Not different parts, additional parts. But not all the time. Just sometimes.

I'm girl, I'm more than girl, i'm less than girl. I am nowhere boy. I can't fully take the trans label. Like, i can, conceivably, it's alright. But no. Not mine.

By definition, genderflux. It's a dimmer switch and for the most part i'm happy in the middle with a circumstantial need in either direction.

By the way it feels in my mouth, Genderfluid sounds better.

By vibes though, i'm sticking with genderqueer. I know what i am, i just can't describe it to myself, leastways to the world.

You don't have to think of yourself as intersex just because you have PCOS. But if you do, i'm grateful to the community that accepts you. At the end of the day, the human body is a strange thing. You may share situations or symptoms with somebody. Remember nothing is a unique experience, no matter how it feels. It's nice to have a community for support.

Just. Be kind.

We're all kinds of fucked up. That's why we're together.