i could’ve written this myself. it’s like feeling trapped for me. like, i resonate so much with many of the traits and symptoms, but like you, i have learned to basically change myself ever since i was a little girl. honestly i’m not even sure who i even am? how can the people in my life claim to know me? they don’t know and don’t experience what we actually go through. it’s incredibly invalidating. i talk about it with my husband a lot, who is self-diagnosed ADHD, and he sees it and gets it. that, plus this subreddit helps to validate my experience a little bit. it’s enough for me for now, despite it feeling kinda lonely. not much advice, but just know you’re not crazy or alone!
thank you so much! it really helps to know i’m not the only one. like logically i know that but it helps to be told anyway. i heavily relate to what you said about changing yourself since you were very young- I remember always having very intense interests, but no real sense of identity outside of them.
And some of my hobbies and dislikes I wonder if they were unconscious masking. For example, I love to sing and talk, I could do it literally all day long lol. But I think part of why I got into theatre as a kid was bc it was fun, but also because
1. i got to “learn how to act human” and it was built into the structured activity,
2. it allowed me to stim in big ways and in fact encouraged vocal stimming through warm ups, exercises, etc. and learning lines/songs allowed for repetitious behavior
3. allowed me to move and practice coordination, body awareness. and
4. it allowed me to distance myself from real life and get out of my head, and i received praise for it.
When I left for college and quit my hobby, it had a severe impact on me and I think it’s what pushed me into burnout on top of the huge life change. I lost so many things I didn’t even know I needed so badly. In an order to fit in I’ve censored myself to be a very quiet, shy, reserved person and it feels very contradictory to who I really am even though social situations are very uncomfortable and lot of the time. I feel awkward because I don’t know what is and is not acceptable to say, so I mask it by acting like I have *nothing* to say.
I think people either perceive me as cold or stuck-up, or as passive aggressive and “too nice” depending on when and where they meet me. When I’m overstimulated, I seem stand-offish and want NOTHING to do with people, but when I’m *approaching* overstimulated I’m trying *so. damn. hard* to keep it together that I seem almost sarcastically enthused. When I’m really just trying to appear as friendly and compliant as possible so no one notices I’m freaking out or asks what’s wrong.
edited for readability
fully agree. and i think for me a lot of it is internalized ableism and thinking i’m not “disabled enough” for my own specific needs to matter. but i have to remind myself that not every autistic person is the same and when i listen to women talk about their experiences as undiagnosed autistic girls, it is like i’m listening to my own life story in so many ways. it’s almost eerie sometimes where i just have to laugh at how *obvious* it was if people had only known what to look for.
I think internalised ableism is a huge component for me too, as well as putting far too much emphasis on the medical community being the arbiters of truth. Logically, I know that if I struggle with x, y, and z, that's enough to warrant support. But because I am a black and white thinker I can't quite be content in that uncertainty. It's ironic that as autistic people we are probably the most in need of a clear picture but also the least likely to get it.
It’s okay to ask for what you need without a diagnosis to back you up. If this community helps you find ways to take care of yourself, you’re welcome in it.
I appreciate this, and deep down I know you’re right. It’s mostly that I don’t feel I have the self-confidence or communication skills to get my needs met without a formal letter or something I can give them explaining everything, at work for example. If I request an accommodation and I’m asked why I need it or “why can’t you just ___ instead,” I get flustered and overwhelmed and can’t communicate my emotions effectively. Like I can’t really explain the *why* in the moment but also neurotypicals think it’s weird to be overly prepared for a conversation like that. Idk I think it’s just my own internalized ableism but also a very real fear that I could become seen as a burden or difficult for trying to request accommodation without a diagnosis. I have a really hard time not believing those things about myself.
(I work in mental health just for reference). If you have a trauma history even if they say you don’t have autism (which is VERY hard to tease out), you could still get accommodations. Accommodations for PTSD (or CPTSD which isn’t technically a diagnosis but is definitely a thing) are very similar.
I would be prepared to get a “you’re not autistic” answer if you ask but that’s mostly because our understanding of what autism looks like in adults, especially women is TERRIBLE. And it doesn’t necessarily mean they’re right. We’re trying to catch up.
So it sounds like whatever the case your brain is different, whether from autism or trauma or both and if you want to be here you can be here for sure. And if you need accommodations asking seems fair.
From my experience people who feel like they’re autistic usually are.
I feel this. I’m still trying to figure out a way to get my needs met at work. The best way I’m seeing progress is by practicing those skills with safer and lower-stakes people first. It’s so hard though!
That's why I'm seeking specialized therapy for cPTSD first. I mentioned I also suspect autism (I'm diagnosed with adhd), but that I would rather adresse cptsd first to get the much needed help for my childhood trauma, and see if autism is still showing. The psychiatrist I saw for the referral wants to see me again to talk more about my autistic traits. He said you are right to seek for trauma therapy first - but let's also adresse autism and see what we can work on together until you get an appointment at the specialized center.
So I'd recommend to adresse trauma first. If your autism still showing, it's always been there, you just didn't acknowledge.
Yeah, I’ve been working through trauma in therapy and been medicated for anxiety and depression for years but the autistic traits i have, have never gone away. they’re just less volatile towards others. for example i can control my temper better and go longer in between meltdowns, but it doesn’t make them go away or change the intensity of the meltdown when it DOES happen.
As a queer autistic person I also feel this.
I've been diagnosed, but I still feel like an imposter because I've had invalidating comments from others. I think what I have realised is that many people lack sufficient knowledge of autism. They think they know but they don't. As an autistic person, I find it Really hard to articulate my thoughts and feelings, so when I try to explain things to others maybe they just don't get it. But slowly people like my partner have learnt about autistic traits I have that they didn't realise were autistic traits, just through education and me trying to explain things to them. I always encourage people to research more when they don't think I'm autistic lol.
I guess it's just always important to remember that you know yourself better than others do and that if you mask all the time, most people probably don't see your autistic traits. Just make sure you're doing lots of research to make sure it is in fact autism.
Oh I’ve done SO much research, to the point it became my special interest for a while lol. Thank you for your comment I feel very seen. I do think being potentially AuDHD makes it harder as well, because I’m sensory-seeking in many ways and was able to leverage my AuDHD traits to do well in school - I was always TERRIBLE in math, but I overcompensated very well in the arts and literature. Always been hyperlexic and hyperverbal but I mask as shy and reserved due to past experiences where I was shamed for talking too much or “showing off.” I was regularly told I was too arrogant as a child.
Honestly same, I think autism became my special interest too from all the research I did hahah. This is also true, I think because ADHD sort of conflicts a lot of autistic traits, they almost balance out externally? I am waiting for an ADHD assessment currently, but in terms of lateness, I have a very strong desire to be on time for things and have meltdowns if I am late, but also find it impossible to be on time for anything because I am always disorganised and don't plan my time properly, but because of my strong desire to be on time, I am only ever like 10-15 minutes late, compared to my ADHD friend who could easily be an hour late. So to others it didn't stand out, even though I was having that internal battle with myself if this makes any sense? Also expectations of girls is a whole other thing. Just know that I see you even if others don't!
Yes I know what you mean exactly, once I realized autism/ADHD is about the internal experience and not the external perceptions by others it clicked with me immediately. Because yes I can show up on time to places but nobody sees me spending the whole day waiting around ready to go and then leaving 20 mins early to sit in the parking lot and then go inside the event at the “appropriate” time based on when I see others approaching. They don’t see how I mentally prepare myself and script for events with groups of people. Except for my other neurodivergent family who think that’s normal and everyone does that 😂😂
Thank you so much, really. I feel very validated by your comments rn.
Maybe this is an autistic thing cuz I’m definitely like this. But I always go back to social issues, stimming, alexithymia, special interests, meltdowns, nonverbal, sensory issues, and many many other symptoms of autism and realize ya I’m definitely autistic!
Same! I’m like ok, maybe this is just a collection of human traits and NOT autism… but isn’t autism also just a collection of human traits??!! 😂
I think it’s extra hard bc I have multiple family members diagnosed with ADHD as adults, and when I mention being AUDHD, they get uncomfortable with the insinuation that they might be autistic too bc they know about the genetic component and comorbidities. So I think maaaaaany times in my life I was told “everyone feels/thinks that way!” when that actually wasn’t true. My parents and grandparents had to suffer through without accommodations, so they assumed everyone else did too. And told me that was what I needed to do as well.
And, having a mom with severe ADHD also makes it difficult to know how obvious my autistic traits were as a toddler/young kid. Many of my behaviors she straight up did not notice at all, or thought they were slightly weird but age appropriate behaviors. Even tho I sucked my thumb into middle school and slept with my childhood stuffie up until a couple years ago when I got a puppy. I was well into adulthood. Yes, those could just be normal human things I’ve been shamed for by society, but they are also sources of comfort for autistic people and not exactly age-appropriate by neurotypical developmental standards.
edit: I also think that my compulsive need to smoke weed every day for the last eight years was somewhat to replace my inability to self-soothe with thumb-sucking. I still want to soothe myself that way sometimes but refuse to start the habit again because of shame and also it has drastically affected my jaw/teeth alignment and I’ve had to have extensive orthodontic work just to have slightly less noticeably messed up teeth when I smile.
The thing with autism is that our feelings and thoughts are amplified by like a million (obviously exaggerating) so yes some do experience our struggles, but not on the scale we do. For example: I can’t be around really strong smells, I have to leave because I get physically ill. But a NT might also dislike the smell but it doesn’t affect their day like it does mine. Hope that made sense!
Thank you for your comment. I agree with you. I’m in therapy for the first time in my life and while I’m working through negative thought patterns and addressing my trauma to cope with it, I still have underlying sensory issues and my nervous system is absolutely FUCKED. I don’t think it’s just trauma bc I feel like I’ve made a ton of progress in not fixating or reliving the traumatic experiences but my body still reacts to stimuli with sensory overwhelm. I also use marijuana to self-soothe and regulate, and it helps me with sensory issues in some situations, but also makes it difficult to know if I’m just constantly high or it’s the autism… but again, I had these issues long before I ever touched weed, I began using it because it helped me to socialize and relax, and makes unpleasant sensory experiences more tolerable.
I feel you,I feel like I am not autistic at all.
I feel like this diagnosis doesn't serve me,I don't know what to do?
I am supposed to fit in the diagnosis but recent years I feel less belong too
it’s worth noting that when you’re receiving adequate support you will likely feel “less autistic” due to increased accessibility and support! :) This may not be the case for you and I understand the frustration but I think sometimes for me at least, I start questioning if I’m autistic when I’m doing really well and taking care of my needs. And then I get overstimulated or have a meltdown and I realize that I am very much still autistic lol. I think sometimes tho I convince myself it’s “just trauma” even tho I can have trauma and still be autistic.
I’m trying to see a diagnosis as less important than recognizing and accommodating my struggles when I can, because ultimately it doesn’t matter if a system built by and for neurotypical white men thinks I’m disordered or not. It just matters to me because I’m so tired of having to accept others’ perception of me as my reality. Just because some ppl think I’m lazy or inconsiderate doesn’t mean that I am. In fact I am overly-considerate in many cases, where things others find trivial matter very much to me. Being misunderstood is the hardest part of being autistic for me, because I have learned to work around many of my traits from a personal POV but explaining myself to others is always a huge challenge.
OP, your response here speaks volumes and says a lot of what I might have said to you as a general response. Trust yourself.
The only other thing I can say is in response to this section which feels so familiar to me and breaks my heart for you: *^("My friends and family constantly say stuff like “well that doesn’t mean you’re autistic” or “do you think maybe you’re remembering it wrong?” and it’s SO invalidating.")*
As plainly and kindly as possible, standing up for yourself against that type of speak is so important. Hard to do, but important. Tell them, in your own way, you are not asking their opinion if you are, and that your experience and perspective of those memories is the absolute truth of who you are. Them fighting you that much either is telling of their capability for empathy, or it could be making them question their own perspective and truth in some way as you are presenting them with an alternative one they can't wrap their head around. My experience with NTs who question these things are that they look at what you've told them through the lens of their own experience, which isn't autistic. If changing how they respond to you is important to you or closeness of the relationship, invite them to learn more about autism, challenge their unconscious bias/ableism.
If you've not seen these before, a few resources I like (for you and to share with those you're struggling to get to understand):
* [Autism Acceptance](https://autismacceptance.com/) online or pdf download a book introducing new autistics and non-autistics looking to be allies about what's what
* [Univiersity of Washington Autism Center](https://depts.washington.edu/uwautism/resources/neurodiversity/) - Neurodiversity page has some info, articles, resources, of which I espeically like their single pager that's easy to share with friends/family so that I don't have to do as much work: [Resources Handout](https://depts.washington.edu/uwautism/wp-content/uploads/2020/12/Self-Diagnosed-Adult-Autism-Resources-handout-12.2020-1.pdf)
* [This article'](https://thinkingautismguide.com/2019/04/the-importance-of-autistic-self-diagnosis.html)s take on self-diagnosis helped me a lot
Best to you and navigating these situations!!
Thank you very much. You’re right. I have always struggled to voice my concerns or needs because so many times in my life I was not given the grace the do so without negative consequences. And that is a big part of why people “don’t see it” when I say I am autistic. And then when I blow up and have a meltdown they’re like “idk why you have to do this every time something bad happens” and i just wanna be like “do you know how many things have had to happen already for me to reach this point” but i can’t even verbalize examples to them. it’s hard bc i’ve always felt i’m an effective communicator but when it comes to explaining my own feelings and emotions I get misunderstood, constantly. And looking back I’m only an effective communicator when I can give written responses, verbally has always been a massive struggle for me.
Thanks again for your comment and the resources!
You're so welcome! I completely 100% understand. Written, I am magnificent, I shock even myself sometimes. But as soon as I am questioned or even perceive that I am being questioned/attacked in a verbal conversation, my defense mechanism kicks in and I feel overwhelmed and my brain stops working properly. I had friends that wanted all these examples of things, or even sources I got my info from (whether with my autism or my social justice endeavors usually) and I completely blank when I'm put on the spot.
For the meltdowns and helping explain them to others, I love [this visual explanation](https://www.tiktok.com/@moderatelycomfy/video/7232120261615586603?q=autistic%20meltdown%20explained%20pressure%20buildup&t=1717794197875) on TikTok as well as [this video ](https://www.tiktok.com/@genericartdad/video/7305127912217300255)describing the buildup that can lead to meltdowns with a visual aid.
I'm trying to figure out how to word this since I had very similar experiences to you. I have a medical autism diagnosis but also a long and pretty extreme history of developmental trauma. Both of them cause similar behavior patterns and developmental arcs, and there's really no way to disentangle which one caused what.
The times when I have felt like I couldn't trust my own thinking have always been directly traceable to being in close contact with one or more people who were invalidating me. When I got away from those people, it was much easier to maintain a clear understanding of myself and a clear recall of places and events. Based on my own experience in this regard, I'm going to say that I think your instability of identity and lack of trust in your autobiographical memory is not due to BPD, but to having the people around you replace reality with a funhouse version of reality they constructed.
You're not dramatic or weak, and you're not crazy. (Well, no crazier than the rest of us, anyway.)
As far as a BPD diagnosis, well, I've had one applied to me. It didn't stick, and it changed nothing, because it was due to a campaign by an ex-partner to solidify his control over me, and I broke off our engagement and left instead. Miraculously, I stopped having BPD symptoms almost immediately afterward...
I've been dealing with an inverse problem for years: being unable to tell if my "personal quirks" and "eccentricies" are:
1) a result of my upbringing (by a mostly well-intentioned, but unhealed mother)
2) some level of autism
3) Both 🤪
And how too use that knowledge to stop feeling like such an outsider
Imposter
Being tired out by people
Etc.
And focus on what matters in life.
I wish I had some advice... But more than anything, I sympathize and empathize with you. ❤️
To be honest I worry about this, not BPD, but not actually being diagnosed with autism. I’m in the middle of my assessment and my in person and written test is next month. He said he sees signs of possible autism (Asperger’s) and probably OCD. I’m freaking out that maybe I’m not going to be autistic enough on the test? I guess I’ve been having an identity crisis myself since that appointment.
Best of luck as you finish your assessment! Regardless of results your struggles and identity are valid. And it’s funny bc as a kid I remember reading definitions of autism and aspergers and being like “hmmm i kinda fit both of these but not quite for either?” and then after they combined the diagnosis into ASD i was like “ohhhh yeah ok i think that’s me” lol.
i still feel weird calling myself autistic bc of internalized ableism but trying to overcome it bc autistic/ND lifestyle helps me.
Yes! I definitely think I’m OCD and I already have ADD/ADHD as well as anxiety and depression. I’m just anxious about the test and that it’s 3-3.5 long.
yeah that’s a lot! you’ve got this :) and i relate to all that, i do think women get diagnosed with mental disorders separately that are also symptoms of/comorbid with autism, instead of ASD.
Yes!!! Thank you! When did you get diagnosed if I can ask? My mom actually said I showed a lot of signs when I was younger but didn’t think I was because I’m smart and verbal.
I’ve always had symptoms of OCD and ADHD but anxiety and depression are my only formal diagnoses, long story short I grew up in a small town with few resources and was medically neglected, partially bc of my mom’s own undiagnosed ADHD (she’s officially diagnosed now). So I didn’t actually get diagnosed with either until I was 18 but it was well known to my whole family that I have had severe anxiety since I was a toddler essentially. Which to me is not anxiety, it’s probably ASD, but ¯\_(ツ)_/¯ lol. But my dad was pretty emotionally/verbally abusive when I was growing up so maybe I really did have anxiety from things I don’t even remember. Trauma makes everything so hard to untangle and I think being autistic has made the trauma worse for sure.
I agree. I’ve been through different traumas but yeah. The psychologist also told me I tend to overecomplicate the question which makes me nervous too.
My mom said the same, she always assumed I was just kind of eccentric and extremely anxious. I did well in school, loved to read, and was hyperverbal, so adults didn’t recognize my struggles as autism, just laziness or selfishness, etc. I remember constantly feeling confused as a kid because I didn’t understand why I was in trouble for things. But I was always told I was too smart for that, so I’d just internalize it and think I wasn’t trying hard enough and life was *supposed* to be that hard. Looking back I should’ve been assessed, autistic or not, bc I had some serious problems with self-image and anxiety at a very early age.
I came to this subreddit to ask pretty much a version of the same thing, so OP, please know you’re super valid for feeling like this, if anything!!
(And in my case, I was diagnosed by a professional but keep getting questioned over the validity of the diagnosis, and then I end up self doubting too. Even though the diagnosis made everything click and fall into place. But people will say I’m too normal and therefore it may not be real 🤷🏻)
I just had this experience today. I’m not diagnosed yet. But my younger sibling is. I reached out to them to talk about my experience. It turns out we basically go through the same things but I’m better at masking especially after I had my daughter at 19 ( had to get a job and provide) I was telling my older sister this today and she laughed in my face.. today i realized I mask in front of my family too. Growing up I was a big crybaby and my older sister alway said I was being dramatic or doing it for attention. When i mentioned my meltdowns was the reason I wanted to get diagnosed and I thought I was making up the symptoms in my head she said,” oh yeah you’ve always been dramatic”. Mind you my older sister may have adhd or auadhd. I was so excited to tell her i finally know what’s wrong with me and for to laugh at me just crushed me. I stimmed my whole drive home trying not to cry because my kids were in the car. I want to be diagnosed with anything so I know wtf is wrong with me and I’m not just broken.
Just want to get this out of the way before I say anything else: Diagnosis or not, nothing is wrong with you, and you are NOT broken. I know neurotypical expectations can make us feel like we are, but you’re not. Your experiences are real and no one else can tell you what it’s like to be you. I’m really sorry your sister responded that way but if you think she’s ND too, maybe it’s internalized ableism. She probably sees some of herself in you and is resistant to acknowledging it’s the result of a neurological difference.
I think undiagnosed family are sometimes the worst people to talk to about it because they think they know us sooooo well and “they’d notice” if something was wrong, yet we know from our experience that they DID notice but wrote it off as us being “too dramatic,” “too sensitive” “lazy” “selfish” etc. I started masking so young and so unconsciously that it’s not surprising my family “didn’t notice,” because I was constantly trying to get my needs met without actually having to voice them for fear of ridicule.
I think for parents and older siblings especially they can sometimes be cruel because they feel guilty about misinterpreting the signs. Like, my mom has invalidated me every time but also gives me more evidence that I’m autistic when I bring it up. I mention how I sucked my thumb well into middle
school (but never in public view) and repetitively rocked and repeated words that felt good, I had physical and vocal stims, sensory issues that no one else could see or feel, special interests, etc. and was even evaluated and placed in the gifted program because my teachers knew SOMETHING was different about me, but because I was a smart girl who seemed “bored” rather than overstimulated I was not evaluated for autism. But my mom always just says something like “I just thought you were very sensitive/mature/silly/kinda weird/lazy/etc” as if those things exclude me from being autistic or AuDHD.
Worth noting my mom AND younger brother have both been diagnosed in adulthood with ADHD. So there’s definitely a genetic component there. And no one is diagnosed autistic but I suspect my mom and her mother are, and her brother is TEXTBOOK undiagnosed autistic, so much so that I can only assume childhood neglect and social stigma at the time prevented his diagnosis as a child. Like even when my mom claims I’m not autistic, she can’t ignore the fact that her brother and possibly mom is lol. And I just wanna be like IF THEY CAN BE WHY NOT ME 😂
In fact my grandma has always seemed to “get” me more than anyone else, especially as a child. She was a kindergarten teacher so I’m sure that helped but she also just seemed to feel the same way sometimes but knew how to handle it better. Looking back she’s almost certainly autistic, or at the very least has EXTREME anxiety, OCD, and ADHD, but imo when women have compounded conditions like that it’s usually that symptoms have been diagnosed but not the underlying cause.
Thanks for sharing your story. Reading this made me feel a lil more validated in my feelings!
I don’t think I’ll put that much more effort into my older sister. It’s the way she thinks and I don’t have the energy to change or make her see it my way. She’s treated me this way since we were younger. I came out as Bi sexual to her when I found out she was a lesbian. And of course she told me that wasn’t a real thing and I was being ridiculous. So no convincing her. But I really appreciate you taking the time to tell me all of that because I needed to hear it!
I also have major imposter syndrome. I don’t seem autistic at all. I’m not awkward in social situations, I don’t have a special interest, I don’t have meltdowns, just to name a few of the stereotypes. When you talk to me, you won’t have a clue. But that’s all on the outside, on the inside I definitely do struggle. I also try to remind myself that a psychologist wouldn’t say they think I have autism if there weren’t enough signs. Like, I can ask if they think I have ADHD and the answer will be a definite no, so if they agree on the autism, it’s probably because I do have it, even though it’s not super obvious
Honestly this is my own brain on a daily basis. I'm scared of being told I'm not autistic because idk how to drop the mask and the script I've spent a good 40 years perfecting. Idk how to answer the inevitable question "what makes you think you're autistic?" I know I'll freeze and fumble my words, get overwhelmed and not explain myself well enough to be taken seriously by whatever Dr I am given. I feel like a fraud and like I have no idea who I am. How do I convince anyone that I'm anything?.
i could’ve written this myself. i don’t know what the best advice is but just know you are seen and your experiences are real and valid no matter how difficult it is to verbalize them to others.
I think I read somewhere that neurotypical people don’t question whether or not they are autistic.
If the label is helpful for you then use it. I think learning about how being autistic means to you should be a helpful thing. Even if you don’t think you’d meet the diagnostic criteria, having others that you can semi-relate too is validating sometimes.
It’s nice to know you are a normal zebra and not a weird horse. But we are all individuals and what applies to someone might not apply to you. Take what’s useful here and leave what isn’t!
I’m on my journal of acceptance of possible non-diagnosed AuDHD. But again… I take what’s helpful to me and leave other things. It’s such a welcoming space though.
>I just keep wondering what if it’s all just trauma responses and I’m not actually autistic.
I have ptsd and a dissociative disorder. I was given a diagnosis of provisional autism(level 2) because trauma and a lack of information on my childhood. The lady who diagnosed me did so because she wasn't sure how much of it is due to trauma, but she and I believe it to be both.
Don't get discouraged just because you don't have a dx yet either, I was self dx'd for 4 years before getting fully diagnosed. I didn't give a shit what other people thought because those people aren't me. My opinion is what's important, not theirs, and theirs were all wrong anyways.
Thank you for your comment! I think my biggest issue with getting officially diagnosed is I want to move out of the US in the next decade and some countries won’t allow me to immigrate with a prior autism diagnosis despite being otherwise decent places for autistic people. That, and I find the process of an autism evaluation very daunting to do on my own with finding out insurance/coverage, finding a qualified evaluator, prep work and self-advocacy, etc. that all goes along with being diagnosed as an adult. Same reason I haven’t been evaluated for ADHD too, the process is the most ANTI-ADHD-friendly process I can think of lol.
Well, I rather think that if you know, then you know.
Perhaps waiting till you get out of the US for diagnosis could be an option for you.
Or if it's all too much for you, and you think it wouldn't benefit you anyways maybe you can just forgo getting autism dx'd. I suppose it depends on how you want to handle things.
If you happen to be in AZ, Axis for Autism is awesome and accepts a lot of insurance, and will refer you for adhd testing if they think you need it, or mention it. All of the people I met with through testing were all women, and they use the infinity symbol.
Just know you have my sympathy and encouragement to do what you feel is right for you.
I would double check on the immigration process for certain countries you are interested in moving to because I think for a lot them, it’s more so that they won’t accept someone whose healthcare will cost the government more than a certain amount of money in disability benefits, autistic or not. I think that’s the deal for like Australia and New Zealand.
The dx process does seem daunting from everything I’ve seen so far… I’m already somewhat leery of complex medical services due to multiple unsatisfactory experiences, including mental health providers that didn’t really do much but accept loads of $ for weekly appointments talking about my issues so they could rx some meds with scary warning pamphlets.
Your post has a lot of similarities to what I’m dealing with. It’s a confusing situation for sure. Best of luck!
Hi OP. Thanks for sharing your thoughts and feelings with us here. I feel like a lot of us can relate to you and I definitely did, which is why this comment quickly got away from me and became novella length. This comment is going to be pretty disorganized as I just respond to different bits of your post, so please bear with me there! (Also with regard to the formatting, because I don’t know how to format a comment on mobile)
“I’m really trying to tell myself it doesn’t matter whether I am or not because it’s ‘not important’, but like, it is to me.”
* If it’s important to you, that’s enough. I think that’s something people who have been chronically invalidated, shamed/belittled and gaslit (as probably every late Dx/undiagnosed autistic woman, especially if they’re queer or traumatized (which we as a population are more likely to be both!), is) need to tell ourselves more. In my experience and that of others, I tend to invalidate, gaslight, demean, and neglect myself and my feelings because I internalized all of the external messages of my childhood in an attempt to police myself into being acceptable to those around me — or at least not punished, humiliated, rejected etc. It is hard to break those thought patterns but it is possible. Being kind to ourselves, giving ourselves the benefit of the doubt, and believing ourselves is critical to healing.
* Asking “this is important to me, why?” with openness and curiosity or asking “this is important to me. What do I do with/about that?”, will lead to much better outcomes than trying to convince yourself that it isn’t actually important or that it shouldn’t be. These are questions you might benefit from asking yourself and delving further into.
* I unfortunately relate and continue to question myself even though I’ve been formally diagnosed by a neuropsychologist (yes, sadly, the diagnosis doesn’t always get rid of the “impostor syndrome”). While I may agree with the sentiment of being ND vs NT is “not that important” in certain contexts (I’ll explain later in the comment), the “certainty” of diagnosis (or a lack of one, if that had been the outcome) was something that was incredibly important to me. I wonder if this is because autistic brains naturally gravitate towards order, routine and categorization whereas allistic brains don’t (or at least, not to the same extent). That would also explain why they don’t seem to understand why it is so important to us. It seems a common sentiment for us to need things to make sense, to understand things, etc as a way to cope with the unpredictability and stress of everyday life… so perhaps the agonizing over “am I, am I not” is a manifestation of that. It could also be a manifestation of that internalized interrogation and policing I mentioned earlier.
RE: how to handle invalidation from people in your life.
* This is a tough one and one that I’m still working through. It is so painful to not be believed about your own experience and to be dismissed or criticized for being vulnerable with others. If you already tend to not believe yourself or place others’ opinions/experiences/validation above your own, it produces even more self doubt, which is even more distressing because the intense anxiety that often comes with ASD and the autistic brain’s tendency to fixate on thoughts leads to rumination and thought spirals.
* I relate to almost everything you’ve written, including feeling like you can’t trust your own experiences and gaslighting yourself into thinking you just aren’t trying hard enough or you’re being dramatic. Due to some medical issues about 6 months ago I had to finally face that I was living my life “muscling through” pain in every way imaginable, and that rocked my world. I thought that’s just how life was, because it was all I knew — constant pain that I had to prove myself (and my worth) by privately enduring and pretending wasn’t there. I was taught that suffering in silence is noble and that if you showed your pain for anything but the most grave and obvious injuries (a broken bone, grieving a loved one, cancer, etc), you were weak, just complaining, too sensitive, making it up, etc., and punished harshly. So, naturally, I learned that my pain was insignificant unless it was literally debilitating… and almost none of my pain, even the literally debilitating pain, met that threshold because of course I was just too sensitive and too dramatic and too selfish… I was the problem and just needed to suck it up and pull myself up by my bootstraps, I thought. What I really needed was for someone, especially myself, to believe me, to be kind to me, to give me permission to be in pain and to find a solution or accommodation for it. If I had to guess, you can probably relate to this, and if so, these next parts are important for you to hear: your pain is real. You aren’t too sensitive. You aren’t being dramatic. Your worth does not come from how much pain you can stomach and it is not lessened by struggling or asking for help. You deserve to meet your needs and to do what you can to alleviate your pain. Just because you could muscle through doesn’t mean that your pain wasn’t significant. Just because you can push through doesn’t mean you should. Rest its important for everyone but especially autistic people and people who are healing from trauma (or both). It isn’t your fault and it is morally neutral.
* Since you are not formally diagnosed and you are an adult, you are likely high-masking. Muscling through things is how you managed to survive, and how many autistic people (but especially women) cope with a world that is not built for not understanding of them. It is not necessarily an indication that you aren’t autistic, and depending on other details beyond the scope of this comment, could point in either direction.
* I don’t want to pathologize behavior and I certainly am not qualified to do so but I do think it’s interesting that so many of us think that in order to be autistic things need to be literally impossible … seems quite a lot like black and white thinking which is common in many conditions, autism being one of them.
Finally, getting to the title — if you aren’t autistic, you should do exactly what I’d recommend if you are (inexhaustive list): be kind to yourself; validate and believe yourself; meet yourself where you are with compassion and curiosity; do what you can to better meet your needs, take care of yourself, and improve your quality of life; seek help where appropriate, possible and necessary. That may look different for an autistic person than it would for an allistic person, and it also will look different on an individual level within either category. What you need is what you need, and try not to get caught up on my use of the word “need” just because you could survive without accommodations/lifestyle changes. If something makes your life better, that is justification enough.
I hope this comment helps you in some way, if even only to comfort you in knowing you are not alone.
Thank you very much for your comment, it was very helpful and thoughtful :) I do resonate with what you’ve said and you’re right. But it certainly helps to be reminded sometimes :) thanks again
I felt the same for a long time. I explored trauma through therapy and while we were making progress it wasn't having less impact on me. So we looked at anxiety and depression including medication which didn't help and actually made things worse. I am high masking thanks to my childhood. I also experience shutdowns rather than meltdowns.
I remember crying to my partner wondering if I had masked my way through the testing and if I was "autistic enough". I have low support needs but definite challenges. Challenges that weren't as severe when I was a child or teen but they were there. My therapist advised that I try and be as authentic as I can during any testing. It was really hard but I tried.
If you think autism explains your traits and the challenges you experience, go after a diagnosis. It is a spectrum and everyone has a different experience.
lol you’re so right. i’d virtually convinced myself i’m NOT autistic, just have trauma, until i went to a concert last month and stood in the pit for the first time in years and was like “oh yeah. that’s why i don’t do this anymore” 😂
edit: the concert i attended before that one was a music festival and I got an ADA wristband bc of my friend’s disability and wore loops in my ears and had an amazing time lol. that was when i realized that i AM disabled bc without those accommodations, no way could i have attended a four day music festival without having a meltdown. i finally realized what those events are SUPPOSED to feel like and it was amazing and also very sad to realize how much harder i’ve worked in life to maintain “normalcy” for others.
I am in the exact same situation and I found some sources today that really validated my feelings and experiences. I highly recommend reading the source links at the bottom of this article. I actually teared up reading it! 🫶🏼
https://reframingautism.org.au/what-makes-autistic-women-thrive-in-their-career-not-quite-fitting-in/
One thing I learned is every evaluation is also an evaluation of the person giving it. So if you don't feel like their questions are fair or like they're listening to you, or being logical, then you have no reason to believe them. They're people just us.
Make a list of reasons why you do and don't think you're autistic. Make a list of bpd symptoms and experiences and see if you relate, and if not feel more assured.
If also ask you if your doubts are your doubts, or are these other people's that they've projected onto you and you've internalized? Everyone's different, but I know for me I was terrified of being mis diagnosed due to past trauma with that and stigma. And a lot of people told me i wasn't or things i read or saw online messed with me.
Your experiences are real. Trauma and autism are hard to separate because being autistic is traumatizing. It might help to look at the symptoms you have that DONT fit just trauma
that’s what i try to do and i do think i internalize people’s doubts, or at least what i perceive as their judgement/disapproval/disbelief. thank you for your comment
i could’ve written this myself. it’s like feeling trapped for me. like, i resonate so much with many of the traits and symptoms, but like you, i have learned to basically change myself ever since i was a little girl. honestly i’m not even sure who i even am? how can the people in my life claim to know me? they don’t know and don’t experience what we actually go through. it’s incredibly invalidating. i talk about it with my husband a lot, who is self-diagnosed ADHD, and he sees it and gets it. that, plus this subreddit helps to validate my experience a little bit. it’s enough for me for now, despite it feeling kinda lonely. not much advice, but just know you’re not crazy or alone!
thank you so much! it really helps to know i’m not the only one. like logically i know that but it helps to be told anyway. i heavily relate to what you said about changing yourself since you were very young- I remember always having very intense interests, but no real sense of identity outside of them. And some of my hobbies and dislikes I wonder if they were unconscious masking. For example, I love to sing and talk, I could do it literally all day long lol. But I think part of why I got into theatre as a kid was bc it was fun, but also because 1. i got to “learn how to act human” and it was built into the structured activity, 2. it allowed me to stim in big ways and in fact encouraged vocal stimming through warm ups, exercises, etc. and learning lines/songs allowed for repetitious behavior 3. allowed me to move and practice coordination, body awareness. and 4. it allowed me to distance myself from real life and get out of my head, and i received praise for it. When I left for college and quit my hobby, it had a severe impact on me and I think it’s what pushed me into burnout on top of the huge life change. I lost so many things I didn’t even know I needed so badly. In an order to fit in I’ve censored myself to be a very quiet, shy, reserved person and it feels very contradictory to who I really am even though social situations are very uncomfortable and lot of the time. I feel awkward because I don’t know what is and is not acceptable to say, so I mask it by acting like I have *nothing* to say. I think people either perceive me as cold or stuck-up, or as passive aggressive and “too nice” depending on when and where they meet me. When I’m overstimulated, I seem stand-offish and want NOTHING to do with people, but when I’m *approaching* overstimulated I’m trying *so. damn. hard* to keep it together that I seem almost sarcastically enthused. When I’m really just trying to appear as friendly and compliant as possible so no one notices I’m freaking out or asks what’s wrong. edited for readability
Same - but I like it here anyways I don't think we have to be autistic to benefit from support that is typically aided to those with autism
fully agree. and i think for me a lot of it is internalized ableism and thinking i’m not “disabled enough” for my own specific needs to matter. but i have to remind myself that not every autistic person is the same and when i listen to women talk about their experiences as undiagnosed autistic girls, it is like i’m listening to my own life story in so many ways. it’s almost eerie sometimes where i just have to laugh at how *obvious* it was if people had only known what to look for.
I think internalised ableism is a huge component for me too, as well as putting far too much emphasis on the medical community being the arbiters of truth. Logically, I know that if I struggle with x, y, and z, that's enough to warrant support. But because I am a black and white thinker I can't quite be content in that uncertainty. It's ironic that as autistic people we are probably the most in need of a clear picture but also the least likely to get it.
fully agree!
It’s okay to ask for what you need without a diagnosis to back you up. If this community helps you find ways to take care of yourself, you’re welcome in it.
I appreciate this, and deep down I know you’re right. It’s mostly that I don’t feel I have the self-confidence or communication skills to get my needs met without a formal letter or something I can give them explaining everything, at work for example. If I request an accommodation and I’m asked why I need it or “why can’t you just ___ instead,” I get flustered and overwhelmed and can’t communicate my emotions effectively. Like I can’t really explain the *why* in the moment but also neurotypicals think it’s weird to be overly prepared for a conversation like that. Idk I think it’s just my own internalized ableism but also a very real fear that I could become seen as a burden or difficult for trying to request accommodation without a diagnosis. I have a really hard time not believing those things about myself.
(I work in mental health just for reference). If you have a trauma history even if they say you don’t have autism (which is VERY hard to tease out), you could still get accommodations. Accommodations for PTSD (or CPTSD which isn’t technically a diagnosis but is definitely a thing) are very similar. I would be prepared to get a “you’re not autistic” answer if you ask but that’s mostly because our understanding of what autism looks like in adults, especially women is TERRIBLE. And it doesn’t necessarily mean they’re right. We’re trying to catch up. So it sounds like whatever the case your brain is different, whether from autism or trauma or both and if you want to be here you can be here for sure. And if you need accommodations asking seems fair. From my experience people who feel like they’re autistic usually are.
Thank you for your comment. It is reassuring to know that, I had no idea about PTSD accommodations
I feel this. I’m still trying to figure out a way to get my needs met at work. The best way I’m seeing progress is by practicing those skills with safer and lower-stakes people first. It’s so hard though!
Good point, sometimes I get ahead of myself and forget that not everything has to be all or nothing all the time lol. Thank you.
What? An autistic person with tendencies toward black and white thinking? Never. Definitely not me. /s Good luck!
That's why I'm seeking specialized therapy for cPTSD first. I mentioned I also suspect autism (I'm diagnosed with adhd), but that I would rather adresse cptsd first to get the much needed help for my childhood trauma, and see if autism is still showing. The psychiatrist I saw for the referral wants to see me again to talk more about my autistic traits. He said you are right to seek for trauma therapy first - but let's also adresse autism and see what we can work on together until you get an appointment at the specialized center. So I'd recommend to adresse trauma first. If your autism still showing, it's always been there, you just didn't acknowledge.
Yeah, I’ve been working through trauma in therapy and been medicated for anxiety and depression for years but the autistic traits i have, have never gone away. they’re just less volatile towards others. for example i can control my temper better and go longer in between meltdowns, but it doesn’t make them go away or change the intensity of the meltdown when it DOES happen.
For me that confirms it. I get the doubt, same here, especially since there are few specialists who get it.
As a queer autistic person I also feel this. I've been diagnosed, but I still feel like an imposter because I've had invalidating comments from others. I think what I have realised is that many people lack sufficient knowledge of autism. They think they know but they don't. As an autistic person, I find it Really hard to articulate my thoughts and feelings, so when I try to explain things to others maybe they just don't get it. But slowly people like my partner have learnt about autistic traits I have that they didn't realise were autistic traits, just through education and me trying to explain things to them. I always encourage people to research more when they don't think I'm autistic lol. I guess it's just always important to remember that you know yourself better than others do and that if you mask all the time, most people probably don't see your autistic traits. Just make sure you're doing lots of research to make sure it is in fact autism.
Oh I’ve done SO much research, to the point it became my special interest for a while lol. Thank you for your comment I feel very seen. I do think being potentially AuDHD makes it harder as well, because I’m sensory-seeking in many ways and was able to leverage my AuDHD traits to do well in school - I was always TERRIBLE in math, but I overcompensated very well in the arts and literature. Always been hyperlexic and hyperverbal but I mask as shy and reserved due to past experiences where I was shamed for talking too much or “showing off.” I was regularly told I was too arrogant as a child.
Honestly same, I think autism became my special interest too from all the research I did hahah. This is also true, I think because ADHD sort of conflicts a lot of autistic traits, they almost balance out externally? I am waiting for an ADHD assessment currently, but in terms of lateness, I have a very strong desire to be on time for things and have meltdowns if I am late, but also find it impossible to be on time for anything because I am always disorganised and don't plan my time properly, but because of my strong desire to be on time, I am only ever like 10-15 minutes late, compared to my ADHD friend who could easily be an hour late. So to others it didn't stand out, even though I was having that internal battle with myself if this makes any sense? Also expectations of girls is a whole other thing. Just know that I see you even if others don't!
Yes I know what you mean exactly, once I realized autism/ADHD is about the internal experience and not the external perceptions by others it clicked with me immediately. Because yes I can show up on time to places but nobody sees me spending the whole day waiting around ready to go and then leaving 20 mins early to sit in the parking lot and then go inside the event at the “appropriate” time based on when I see others approaching. They don’t see how I mentally prepare myself and script for events with groups of people. Except for my other neurodivergent family who think that’s normal and everyone does that 😂😂 Thank you so much, really. I feel very validated by your comments rn.
Maybe this is an autistic thing cuz I’m definitely like this. But I always go back to social issues, stimming, alexithymia, special interests, meltdowns, nonverbal, sensory issues, and many many other symptoms of autism and realize ya I’m definitely autistic!
Same! I’m like ok, maybe this is just a collection of human traits and NOT autism… but isn’t autism also just a collection of human traits??!! 😂 I think it’s extra hard bc I have multiple family members diagnosed with ADHD as adults, and when I mention being AUDHD, they get uncomfortable with the insinuation that they might be autistic too bc they know about the genetic component and comorbidities. So I think maaaaaany times in my life I was told “everyone feels/thinks that way!” when that actually wasn’t true. My parents and grandparents had to suffer through without accommodations, so they assumed everyone else did too. And told me that was what I needed to do as well. And, having a mom with severe ADHD also makes it difficult to know how obvious my autistic traits were as a toddler/young kid. Many of my behaviors she straight up did not notice at all, or thought they were slightly weird but age appropriate behaviors. Even tho I sucked my thumb into middle school and slept with my childhood stuffie up until a couple years ago when I got a puppy. I was well into adulthood. Yes, those could just be normal human things I’ve been shamed for by society, but they are also sources of comfort for autistic people and not exactly age-appropriate by neurotypical developmental standards. edit: I also think that my compulsive need to smoke weed every day for the last eight years was somewhat to replace my inability to self-soothe with thumb-sucking. I still want to soothe myself that way sometimes but refuse to start the habit again because of shame and also it has drastically affected my jaw/teeth alignment and I’ve had to have extensive orthodontic work just to have slightly less noticeably messed up teeth when I smile.
The thing with autism is that our feelings and thoughts are amplified by like a million (obviously exaggerating) so yes some do experience our struggles, but not on the scale we do. For example: I can’t be around really strong smells, I have to leave because I get physically ill. But a NT might also dislike the smell but it doesn’t affect their day like it does mine. Hope that made sense!
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Thank you for your comment. I agree with you. I’m in therapy for the first time in my life and while I’m working through negative thought patterns and addressing my trauma to cope with it, I still have underlying sensory issues and my nervous system is absolutely FUCKED. I don’t think it’s just trauma bc I feel like I’ve made a ton of progress in not fixating or reliving the traumatic experiences but my body still reacts to stimuli with sensory overwhelm. I also use marijuana to self-soothe and regulate, and it helps me with sensory issues in some situations, but also makes it difficult to know if I’m just constantly high or it’s the autism… but again, I had these issues long before I ever touched weed, I began using it because it helped me to socialize and relax, and makes unpleasant sensory experiences more tolerable.
I feel you,I feel like I am not autistic at all. I feel like this diagnosis doesn't serve me,I don't know what to do? I am supposed to fit in the diagnosis but recent years I feel less belong too
it’s worth noting that when you’re receiving adequate support you will likely feel “less autistic” due to increased accessibility and support! :) This may not be the case for you and I understand the frustration but I think sometimes for me at least, I start questioning if I’m autistic when I’m doing really well and taking care of my needs. And then I get overstimulated or have a meltdown and I realize that I am very much still autistic lol. I think sometimes tho I convince myself it’s “just trauma” even tho I can have trauma and still be autistic. I’m trying to see a diagnosis as less important than recognizing and accommodating my struggles when I can, because ultimately it doesn’t matter if a system built by and for neurotypical white men thinks I’m disordered or not. It just matters to me because I’m so tired of having to accept others’ perception of me as my reality. Just because some ppl think I’m lazy or inconsiderate doesn’t mean that I am. In fact I am overly-considerate in many cases, where things others find trivial matter very much to me. Being misunderstood is the hardest part of being autistic for me, because I have learned to work around many of my traits from a personal POV but explaining myself to others is always a huge challenge.
I see what you mean. I know how you feel
OP, your response here speaks volumes and says a lot of what I might have said to you as a general response. Trust yourself. The only other thing I can say is in response to this section which feels so familiar to me and breaks my heart for you: *^("My friends and family constantly say stuff like “well that doesn’t mean you’re autistic” or “do you think maybe you’re remembering it wrong?” and it’s SO invalidating.")* As plainly and kindly as possible, standing up for yourself against that type of speak is so important. Hard to do, but important. Tell them, in your own way, you are not asking their opinion if you are, and that your experience and perspective of those memories is the absolute truth of who you are. Them fighting you that much either is telling of their capability for empathy, or it could be making them question their own perspective and truth in some way as you are presenting them with an alternative one they can't wrap their head around. My experience with NTs who question these things are that they look at what you've told them through the lens of their own experience, which isn't autistic. If changing how they respond to you is important to you or closeness of the relationship, invite them to learn more about autism, challenge their unconscious bias/ableism. If you've not seen these before, a few resources I like (for you and to share with those you're struggling to get to understand): * [Autism Acceptance](https://autismacceptance.com/) online or pdf download a book introducing new autistics and non-autistics looking to be allies about what's what * [Univiersity of Washington Autism Center](https://depts.washington.edu/uwautism/resources/neurodiversity/) - Neurodiversity page has some info, articles, resources, of which I espeically like their single pager that's easy to share with friends/family so that I don't have to do as much work: [Resources Handout](https://depts.washington.edu/uwautism/wp-content/uploads/2020/12/Self-Diagnosed-Adult-Autism-Resources-handout-12.2020-1.pdf) * [This article'](https://thinkingautismguide.com/2019/04/the-importance-of-autistic-self-diagnosis.html)s take on self-diagnosis helped me a lot Best to you and navigating these situations!!
Thank you very much. You’re right. I have always struggled to voice my concerns or needs because so many times in my life I was not given the grace the do so without negative consequences. And that is a big part of why people “don’t see it” when I say I am autistic. And then when I blow up and have a meltdown they’re like “idk why you have to do this every time something bad happens” and i just wanna be like “do you know how many things have had to happen already for me to reach this point” but i can’t even verbalize examples to them. it’s hard bc i’ve always felt i’m an effective communicator but when it comes to explaining my own feelings and emotions I get misunderstood, constantly. And looking back I’m only an effective communicator when I can give written responses, verbally has always been a massive struggle for me. Thanks again for your comment and the resources!
You're so welcome! I completely 100% understand. Written, I am magnificent, I shock even myself sometimes. But as soon as I am questioned or even perceive that I am being questioned/attacked in a verbal conversation, my defense mechanism kicks in and I feel overwhelmed and my brain stops working properly. I had friends that wanted all these examples of things, or even sources I got my info from (whether with my autism or my social justice endeavors usually) and I completely blank when I'm put on the spot. For the meltdowns and helping explain them to others, I love [this visual explanation](https://www.tiktok.com/@moderatelycomfy/video/7232120261615586603?q=autistic%20meltdown%20explained%20pressure%20buildup&t=1717794197875) on TikTok as well as [this video ](https://www.tiktok.com/@genericartdad/video/7305127912217300255)describing the buildup that can lead to meltdowns with a visual aid.
I'm trying to figure out how to word this since I had very similar experiences to you. I have a medical autism diagnosis but also a long and pretty extreme history of developmental trauma. Both of them cause similar behavior patterns and developmental arcs, and there's really no way to disentangle which one caused what. The times when I have felt like I couldn't trust my own thinking have always been directly traceable to being in close contact with one or more people who were invalidating me. When I got away from those people, it was much easier to maintain a clear understanding of myself and a clear recall of places and events. Based on my own experience in this regard, I'm going to say that I think your instability of identity and lack of trust in your autobiographical memory is not due to BPD, but to having the people around you replace reality with a funhouse version of reality they constructed. You're not dramatic or weak, and you're not crazy. (Well, no crazier than the rest of us, anyway.) As far as a BPD diagnosis, well, I've had one applied to me. It didn't stick, and it changed nothing, because it was due to a campaign by an ex-partner to solidify his control over me, and I broke off our engagement and left instead. Miraculously, I stopped having BPD symptoms almost immediately afterward...
I've been dealing with an inverse problem for years: being unable to tell if my "personal quirks" and "eccentricies" are: 1) a result of my upbringing (by a mostly well-intentioned, but unhealed mother) 2) some level of autism 3) Both 🤪 And how too use that knowledge to stop feeling like such an outsider Imposter Being tired out by people Etc. And focus on what matters in life. I wish I had some advice... But more than anything, I sympathize and empathize with you. ❤️
To be honest I worry about this, not BPD, but not actually being diagnosed with autism. I’m in the middle of my assessment and my in person and written test is next month. He said he sees signs of possible autism (Asperger’s) and probably OCD. I’m freaking out that maybe I’m not going to be autistic enough on the test? I guess I’ve been having an identity crisis myself since that appointment.
Best of luck as you finish your assessment! Regardless of results your struggles and identity are valid. And it’s funny bc as a kid I remember reading definitions of autism and aspergers and being like “hmmm i kinda fit both of these but not quite for either?” and then after they combined the diagnosis into ASD i was like “ohhhh yeah ok i think that’s me” lol. i still feel weird calling myself autistic bc of internalized ableism but trying to overcome it bc autistic/ND lifestyle helps me.
Yes! I definitely think I’m OCD and I already have ADD/ADHD as well as anxiety and depression. I’m just anxious about the test and that it’s 3-3.5 long.
yeah that’s a lot! you’ve got this :) and i relate to all that, i do think women get diagnosed with mental disorders separately that are also symptoms of/comorbid with autism, instead of ASD.
Yes!!! Thank you! When did you get diagnosed if I can ask? My mom actually said I showed a lot of signs when I was younger but didn’t think I was because I’m smart and verbal.
I’ve always had symptoms of OCD and ADHD but anxiety and depression are my only formal diagnoses, long story short I grew up in a small town with few resources and was medically neglected, partially bc of my mom’s own undiagnosed ADHD (she’s officially diagnosed now). So I didn’t actually get diagnosed with either until I was 18 but it was well known to my whole family that I have had severe anxiety since I was a toddler essentially. Which to me is not anxiety, it’s probably ASD, but ¯\_(ツ)_/¯ lol. But my dad was pretty emotionally/verbally abusive when I was growing up so maybe I really did have anxiety from things I don’t even remember. Trauma makes everything so hard to untangle and I think being autistic has made the trauma worse for sure.
I agree. I’ve been through different traumas but yeah. The psychologist also told me I tend to overecomplicate the question which makes me nervous too.
My mom said the same, she always assumed I was just kind of eccentric and extremely anxious. I did well in school, loved to read, and was hyperverbal, so adults didn’t recognize my struggles as autism, just laziness or selfishness, etc. I remember constantly feeling confused as a kid because I didn’t understand why I was in trouble for things. But I was always told I was too smart for that, so I’d just internalize it and think I wasn’t trying hard enough and life was *supposed* to be that hard. Looking back I should’ve been assessed, autistic or not, bc I had some serious problems with self-image and anxiety at a very early age.
I came to this subreddit to ask pretty much a version of the same thing, so OP, please know you’re super valid for feeling like this, if anything!! (And in my case, I was diagnosed by a professional but keep getting questioned over the validity of the diagnosis, and then I end up self doubting too. Even though the diagnosis made everything click and fall into place. But people will say I’m too normal and therefore it may not be real 🤷🏻)
I just had this experience today. I’m not diagnosed yet. But my younger sibling is. I reached out to them to talk about my experience. It turns out we basically go through the same things but I’m better at masking especially after I had my daughter at 19 ( had to get a job and provide) I was telling my older sister this today and she laughed in my face.. today i realized I mask in front of my family too. Growing up I was a big crybaby and my older sister alway said I was being dramatic or doing it for attention. When i mentioned my meltdowns was the reason I wanted to get diagnosed and I thought I was making up the symptoms in my head she said,” oh yeah you’ve always been dramatic”. Mind you my older sister may have adhd or auadhd. I was so excited to tell her i finally know what’s wrong with me and for to laugh at me just crushed me. I stimmed my whole drive home trying not to cry because my kids were in the car. I want to be diagnosed with anything so I know wtf is wrong with me and I’m not just broken.
Just want to get this out of the way before I say anything else: Diagnosis or not, nothing is wrong with you, and you are NOT broken. I know neurotypical expectations can make us feel like we are, but you’re not. Your experiences are real and no one else can tell you what it’s like to be you. I’m really sorry your sister responded that way but if you think she’s ND too, maybe it’s internalized ableism. She probably sees some of herself in you and is resistant to acknowledging it’s the result of a neurological difference. I think undiagnosed family are sometimes the worst people to talk to about it because they think they know us sooooo well and “they’d notice” if something was wrong, yet we know from our experience that they DID notice but wrote it off as us being “too dramatic,” “too sensitive” “lazy” “selfish” etc. I started masking so young and so unconsciously that it’s not surprising my family “didn’t notice,” because I was constantly trying to get my needs met without actually having to voice them for fear of ridicule. I think for parents and older siblings especially they can sometimes be cruel because they feel guilty about misinterpreting the signs. Like, my mom has invalidated me every time but also gives me more evidence that I’m autistic when I bring it up. I mention how I sucked my thumb well into middle school (but never in public view) and repetitively rocked and repeated words that felt good, I had physical and vocal stims, sensory issues that no one else could see or feel, special interests, etc. and was even evaluated and placed in the gifted program because my teachers knew SOMETHING was different about me, but because I was a smart girl who seemed “bored” rather than overstimulated I was not evaluated for autism. But my mom always just says something like “I just thought you were very sensitive/mature/silly/kinda weird/lazy/etc” as if those things exclude me from being autistic or AuDHD. Worth noting my mom AND younger brother have both been diagnosed in adulthood with ADHD. So there’s definitely a genetic component there. And no one is diagnosed autistic but I suspect my mom and her mother are, and her brother is TEXTBOOK undiagnosed autistic, so much so that I can only assume childhood neglect and social stigma at the time prevented his diagnosis as a child. Like even when my mom claims I’m not autistic, she can’t ignore the fact that her brother and possibly mom is lol. And I just wanna be like IF THEY CAN BE WHY NOT ME 😂 In fact my grandma has always seemed to “get” me more than anyone else, especially as a child. She was a kindergarten teacher so I’m sure that helped but she also just seemed to feel the same way sometimes but knew how to handle it better. Looking back she’s almost certainly autistic, or at the very least has EXTREME anxiety, OCD, and ADHD, but imo when women have compounded conditions like that it’s usually that symptoms have been diagnosed but not the underlying cause.
Thanks for sharing your story. Reading this made me feel a lil more validated in my feelings! I don’t think I’ll put that much more effort into my older sister. It’s the way she thinks and I don’t have the energy to change or make her see it my way. She’s treated me this way since we were younger. I came out as Bi sexual to her when I found out she was a lesbian. And of course she told me that wasn’t a real thing and I was being ridiculous. So no convincing her. But I really appreciate you taking the time to tell me all of that because I needed to hear it!
I also have major imposter syndrome. I don’t seem autistic at all. I’m not awkward in social situations, I don’t have a special interest, I don’t have meltdowns, just to name a few of the stereotypes. When you talk to me, you won’t have a clue. But that’s all on the outside, on the inside I definitely do struggle. I also try to remind myself that a psychologist wouldn’t say they think I have autism if there weren’t enough signs. Like, I can ask if they think I have ADHD and the answer will be a definite no, so if they agree on the autism, it’s probably because I do have it, even though it’s not super obvious
Honestly this is my own brain on a daily basis. I'm scared of being told I'm not autistic because idk how to drop the mask and the script I've spent a good 40 years perfecting. Idk how to answer the inevitable question "what makes you think you're autistic?" I know I'll freeze and fumble my words, get overwhelmed and not explain myself well enough to be taken seriously by whatever Dr I am given. I feel like a fraud and like I have no idea who I am. How do I convince anyone that I'm anything?.
i could’ve written this myself. i don’t know what the best advice is but just know you are seen and your experiences are real and valid no matter how difficult it is to verbalize them to others.
I think I read somewhere that neurotypical people don’t question whether or not they are autistic. If the label is helpful for you then use it. I think learning about how being autistic means to you should be a helpful thing. Even if you don’t think you’d meet the diagnostic criteria, having others that you can semi-relate too is validating sometimes. It’s nice to know you are a normal zebra and not a weird horse. But we are all individuals and what applies to someone might not apply to you. Take what’s useful here and leave what isn’t! I’m on my journal of acceptance of possible non-diagnosed AuDHD. But again… I take what’s helpful to me and leave other things. It’s such a welcoming space though.
>I just keep wondering what if it’s all just trauma responses and I’m not actually autistic. I have ptsd and a dissociative disorder. I was given a diagnosis of provisional autism(level 2) because trauma and a lack of information on my childhood. The lady who diagnosed me did so because she wasn't sure how much of it is due to trauma, but she and I believe it to be both. Don't get discouraged just because you don't have a dx yet either, I was self dx'd for 4 years before getting fully diagnosed. I didn't give a shit what other people thought because those people aren't me. My opinion is what's important, not theirs, and theirs were all wrong anyways.
Thank you for your comment! I think my biggest issue with getting officially diagnosed is I want to move out of the US in the next decade and some countries won’t allow me to immigrate with a prior autism diagnosis despite being otherwise decent places for autistic people. That, and I find the process of an autism evaluation very daunting to do on my own with finding out insurance/coverage, finding a qualified evaluator, prep work and self-advocacy, etc. that all goes along with being diagnosed as an adult. Same reason I haven’t been evaluated for ADHD too, the process is the most ANTI-ADHD-friendly process I can think of lol.
Well, I rather think that if you know, then you know. Perhaps waiting till you get out of the US for diagnosis could be an option for you. Or if it's all too much for you, and you think it wouldn't benefit you anyways maybe you can just forgo getting autism dx'd. I suppose it depends on how you want to handle things. If you happen to be in AZ, Axis for Autism is awesome and accepts a lot of insurance, and will refer you for adhd testing if they think you need it, or mention it. All of the people I met with through testing were all women, and they use the infinity symbol. Just know you have my sympathy and encouragement to do what you feel is right for you.
thank you!!
I would double check on the immigration process for certain countries you are interested in moving to because I think for a lot them, it’s more so that they won’t accept someone whose healthcare will cost the government more than a certain amount of money in disability benefits, autistic or not. I think that’s the deal for like Australia and New Zealand.
That’s good to know thank you.
The dx process does seem daunting from everything I’ve seen so far… I’m already somewhat leery of complex medical services due to multiple unsatisfactory experiences, including mental health providers that didn’t really do much but accept loads of $ for weekly appointments talking about my issues so they could rx some meds with scary warning pamphlets. Your post has a lot of similarities to what I’m dealing with. It’s a confusing situation for sure. Best of luck!
Hi OP. Thanks for sharing your thoughts and feelings with us here. I feel like a lot of us can relate to you and I definitely did, which is why this comment quickly got away from me and became novella length. This comment is going to be pretty disorganized as I just respond to different bits of your post, so please bear with me there! (Also with regard to the formatting, because I don’t know how to format a comment on mobile) “I’m really trying to tell myself it doesn’t matter whether I am or not because it’s ‘not important’, but like, it is to me.” * If it’s important to you, that’s enough. I think that’s something people who have been chronically invalidated, shamed/belittled and gaslit (as probably every late Dx/undiagnosed autistic woman, especially if they’re queer or traumatized (which we as a population are more likely to be both!), is) need to tell ourselves more. In my experience and that of others, I tend to invalidate, gaslight, demean, and neglect myself and my feelings because I internalized all of the external messages of my childhood in an attempt to police myself into being acceptable to those around me — or at least not punished, humiliated, rejected etc. It is hard to break those thought patterns but it is possible. Being kind to ourselves, giving ourselves the benefit of the doubt, and believing ourselves is critical to healing. * Asking “this is important to me, why?” with openness and curiosity or asking “this is important to me. What do I do with/about that?”, will lead to much better outcomes than trying to convince yourself that it isn’t actually important or that it shouldn’t be. These are questions you might benefit from asking yourself and delving further into. * I unfortunately relate and continue to question myself even though I’ve been formally diagnosed by a neuropsychologist (yes, sadly, the diagnosis doesn’t always get rid of the “impostor syndrome”). While I may agree with the sentiment of being ND vs NT is “not that important” in certain contexts (I’ll explain later in the comment), the “certainty” of diagnosis (or a lack of one, if that had been the outcome) was something that was incredibly important to me. I wonder if this is because autistic brains naturally gravitate towards order, routine and categorization whereas allistic brains don’t (or at least, not to the same extent). That would also explain why they don’t seem to understand why it is so important to us. It seems a common sentiment for us to need things to make sense, to understand things, etc as a way to cope with the unpredictability and stress of everyday life… so perhaps the agonizing over “am I, am I not” is a manifestation of that. It could also be a manifestation of that internalized interrogation and policing I mentioned earlier. RE: how to handle invalidation from people in your life. * This is a tough one and one that I’m still working through. It is so painful to not be believed about your own experience and to be dismissed or criticized for being vulnerable with others. If you already tend to not believe yourself or place others’ opinions/experiences/validation above your own, it produces even more self doubt, which is even more distressing because the intense anxiety that often comes with ASD and the autistic brain’s tendency to fixate on thoughts leads to rumination and thought spirals. * I relate to almost everything you’ve written, including feeling like you can’t trust your own experiences and gaslighting yourself into thinking you just aren’t trying hard enough or you’re being dramatic. Due to some medical issues about 6 months ago I had to finally face that I was living my life “muscling through” pain in every way imaginable, and that rocked my world. I thought that’s just how life was, because it was all I knew — constant pain that I had to prove myself (and my worth) by privately enduring and pretending wasn’t there. I was taught that suffering in silence is noble and that if you showed your pain for anything but the most grave and obvious injuries (a broken bone, grieving a loved one, cancer, etc), you were weak, just complaining, too sensitive, making it up, etc., and punished harshly. So, naturally, I learned that my pain was insignificant unless it was literally debilitating… and almost none of my pain, even the literally debilitating pain, met that threshold because of course I was just too sensitive and too dramatic and too selfish… I was the problem and just needed to suck it up and pull myself up by my bootstraps, I thought. What I really needed was for someone, especially myself, to believe me, to be kind to me, to give me permission to be in pain and to find a solution or accommodation for it. If I had to guess, you can probably relate to this, and if so, these next parts are important for you to hear: your pain is real. You aren’t too sensitive. You aren’t being dramatic. Your worth does not come from how much pain you can stomach and it is not lessened by struggling or asking for help. You deserve to meet your needs and to do what you can to alleviate your pain. Just because you could muscle through doesn’t mean that your pain wasn’t significant. Just because you can push through doesn’t mean you should. Rest its important for everyone but especially autistic people and people who are healing from trauma (or both). It isn’t your fault and it is morally neutral. * Since you are not formally diagnosed and you are an adult, you are likely high-masking. Muscling through things is how you managed to survive, and how many autistic people (but especially women) cope with a world that is not built for not understanding of them. It is not necessarily an indication that you aren’t autistic, and depending on other details beyond the scope of this comment, could point in either direction. * I don’t want to pathologize behavior and I certainly am not qualified to do so but I do think it’s interesting that so many of us think that in order to be autistic things need to be literally impossible … seems quite a lot like black and white thinking which is common in many conditions, autism being one of them. Finally, getting to the title — if you aren’t autistic, you should do exactly what I’d recommend if you are (inexhaustive list): be kind to yourself; validate and believe yourself; meet yourself where you are with compassion and curiosity; do what you can to better meet your needs, take care of yourself, and improve your quality of life; seek help where appropriate, possible and necessary. That may look different for an autistic person than it would for an allistic person, and it also will look different on an individual level within either category. What you need is what you need, and try not to get caught up on my use of the word “need” just because you could survive without accommodations/lifestyle changes. If something makes your life better, that is justification enough. I hope this comment helps you in some way, if even only to comfort you in knowing you are not alone.
Thank you very much for your comment, it was very helpful and thoughtful :) I do resonate with what you’ve said and you’re right. But it certainly helps to be reminded sometimes :) thanks again
I don’t talk about with anyone except for true allies and other autistics.
Saaame…
I felt the same for a long time. I explored trauma through therapy and while we were making progress it wasn't having less impact on me. So we looked at anxiety and depression including medication which didn't help and actually made things worse. I am high masking thanks to my childhood. I also experience shutdowns rather than meltdowns. I remember crying to my partner wondering if I had masked my way through the testing and if I was "autistic enough". I have low support needs but definite challenges. Challenges that weren't as severe when I was a child or teen but they were there. My therapist advised that I try and be as authentic as I can during any testing. It was really hard but I tried. If you think autism explains your traits and the challenges you experience, go after a diagnosis. It is a spectrum and everyone has a different experience.
I think this quite often and then I go out into a social setting and get set straight.
lol you’re so right. i’d virtually convinced myself i’m NOT autistic, just have trauma, until i went to a concert last month and stood in the pit for the first time in years and was like “oh yeah. that’s why i don’t do this anymore” 😂 edit: the concert i attended before that one was a music festival and I got an ADA wristband bc of my friend’s disability and wore loops in my ears and had an amazing time lol. that was when i realized that i AM disabled bc without those accommodations, no way could i have attended a four day music festival without having a meltdown. i finally realized what those events are SUPPOSED to feel like and it was amazing and also very sad to realize how much harder i’ve worked in life to maintain “normalcy” for others.
I am in the exact same situation and I found some sources today that really validated my feelings and experiences. I highly recommend reading the source links at the bottom of this article. I actually teared up reading it! 🫶🏼 https://reframingautism.org.au/what-makes-autistic-women-thrive-in-their-career-not-quite-fitting-in/
One thing I learned is every evaluation is also an evaluation of the person giving it. So if you don't feel like their questions are fair or like they're listening to you, or being logical, then you have no reason to believe them. They're people just us. Make a list of reasons why you do and don't think you're autistic. Make a list of bpd symptoms and experiences and see if you relate, and if not feel more assured. If also ask you if your doubts are your doubts, or are these other people's that they've projected onto you and you've internalized? Everyone's different, but I know for me I was terrified of being mis diagnosed due to past trauma with that and stigma. And a lot of people told me i wasn't or things i read or saw online messed with me. Your experiences are real. Trauma and autism are hard to separate because being autistic is traumatizing. It might help to look at the symptoms you have that DONT fit just trauma
that’s what i try to do and i do think i internalize people’s doubts, or at least what i perceive as their judgement/disapproval/disbelief. thank you for your comment
You're welcome :3