#are the meds actually helping or am i just experiencing adhd stress response. who knows!!!

[lildoodlecat]

h

[notabled-noodle]

In response to your personal post about dissociation.. I'm a little unsure if you basically decided to leave the subject alone for now, and I'm not unwantingly butting in.. if I am, you can ofc ignore this :)

I am personally and professionally of the opinion that the dissociative disorders are some of the most under-researched, poorly understood and random designations in the diagnostic system. By no means, does this mean that I don't believe in the experiences associated with dissociation, hell, I'm a dissociative bitch myself, but I do think that it's very hard to say anything about dissociative experiences that has any solid scientific basis.

Therefore I am taking off my psychologist hat, and I'm going to share some personal first hand and second hand anecdotes that may or may not be helpful somehow.

First off about the 70% of the time feeling dissociated/disconnected from your body. With what little I know of you, I tend to contribute this at least partially to your sensory sensitivities - it sounds like "your body in the world" is not a very nice place to be, so it makes sense that you spent a lot of time out of touch with it. But in terms of anecdotes, I have a friend, a trans girl. For her a similar constant dissociation was at least partially related to gender questions, and the further she got in her transition, the more in touch she felt with her body (and emotions). I have a partner with DID, who thought they were always dissociated. When they started adhd meds some of the fog lifted, and they learned that for them there was a difference between adhd fog and dissociation that they didn't quite see previously. Another partner who is autistic and has ptsd feels disconnected from reality as a whole, and while they have a vivid rich inner life, they struggle to connect emotionally with the "real world". They are questioning schizoid pd. Personally I used to feel similarly, still do sometimes, and I think for me it was in large part due to a life-long experience of being an "outsider"/not quite human, an observer of not just the world but also "myself", and it was very meta in a distinctly prodromal psychosis way I guess ^^"

As for spicy dissociation and feeling "just not present", I'm not 100% sure I understand what you mean, or rather that could mean different things to me. It could be that you experience amnesia for these episodes (thus feeling like you weren't there), it could be an experience of being on autopilot without actually decision making power, or it could be the feeling of another presence taking over temporarily (or some mix). For example I personally experience both of the latter, but not the first (blackout amnesia). But since I'm not sure what you mean by it, I won't comment much more.

In terms of the flashback triggering dissociation triggering an emotional flashback! THAT I know what you mean, like yes, that is a thing.

The way I conceptualise it, something triggers a flashback. Which is upsetting, so the brain reacts by trying to shut down via dissociation, much like it might have done at the actual traumatic event in question. And then the dissociation sticks around, not allowing you to access your emotions etc. So when the dissociation lifts, you are hit by the emotions related to the flashback.

In terms of what trauma counts for what disorder etc, sure, that can matter for an official diagnosis, but in terms of personal experience, it's honestly rather simple: Anything that you personally experienced as traumatic has the potential to cause you to have trauma reactions later - such as flashbacks, dissociation and more. (Also might wanna throw in there that it's well-established that autistic (and other differently nd) people often interpret and experience stressful events in a more traumatizing way than neurotypical counterparts.)

Losing control of your body while still having full awareness would be interpreted as a delusion of control by most psychiatrists, a symptom of psychosis. There's a lot to be said about the differences and similarities between dissociative and psychotic experiences, and once again, it's not a subject where I feel confident saying anything in a professional capacity. That said, there's a few things to look out for in understanding the nature of what's going on.

In delusions of control, the sufferer often (but not always) have an accompanying delusion about who/what is controlling them. Whether this is the case of not, delusions of control are usually (but not always) experienced as forceful and uncomfortable/scary.

When speaking of personal and secondhand experiences of both identity dissociation, compartmentalization and delusions of control, I tend to think that it's "open to personal interpretation of the experience".

If the experience is more in the realm of "someone else takes over for a while but it's cool" I'm not super worried. Whereas if the experience is that of losing control of your body, being unable to influence what you do/say, potentially accompanied by a sense of external control, I would be worried, both because that's not a nice feeling and also because I associate that with delusions of control (psychosis).

Personally I feel that the fact that psychiatry only ever offered me one explanation for my identity/control fuckery (as part of psychosis, something to exterminate), while I also felt alienated by the language/discourse surrounding dissociative disorders, lead me down some dark paths in the past..

These days I/we are pretty ok on the whole thing, but yeah...

Dunno if any of that was helpful at all?

I have kind of decided just to leave it be, as in… I’m not actively seeking out answers. but I am still mulling it over and trying to think of the best way to describe my symptoms. so no active discovery, just passive thought.

it does make a lot of sense that both my gender and my sensory issues would contribute to dissociation. and, you know, my chronic pain might have something to do with it too, if my brain has decided that dissociation is a coping mechanism. in terms of all that, I think the best I can do is try to look after my sensory needs and my pain needs and see if that helps reduce the dissociation? we’ll see

I haven’t experienced amnesia for several years, and the spicy dissociation is what seems to have replaced the episodes of amnesia. it’s like I’m half here and half on a different planet. the half that’s here is on autopilot, and the half on a different planet is thinking through fog. it’s hard to explain, but yeah that’s the situation

thanks for explaining about the emotional flashbacks being triggered by the lifting of dissociation! that explanation makes a lot of sense to me, and seems to be accurate to my experiences

it also makes sense that autism would make me more susceptible to ending up traumatised. I’ve read a bit about that before, but I’ve never really applied it to myself, because my trauma has been really unusual (in that it’s happened in bits and pieces). I’ve only started questioning it all now because my mum thinks that I can’t possibly be traumatised compared to what caused her trauma and… yeah. I don’t know.

hmm and about the delusion of control… it doesn’t feel great at all. it feels like I’m on the inside of a robot, and some supervillain in the distance has decided to manipulate what the robot does. I’m screaming internally, but the robot doesn’t listen to me, it just does other shit. nothing dangerous — usually it just makes me say things or eat something I wouldn’t normally eat. it is very uncomfortable though and I wish it wouldn’t happen!

I do have some psychosis associated with my OCD, so I don’t know if this is possibly a part of that or if it’s unrelated. my OCD psychosis wasn’t considered bad enough for me to be on anti-psychotics or anything, so it generally freaks me out but is mild. it’s usually just that I can feel ghosts touching my body, and then I have a compulsion to get rid of the ghosts

yeah, anyway — thanks for the input! from what little research I’ve done, it does seem like a very messy area in terms of distinguishing what’s going on

[babaleshy]

I'm Autistic

Because this will likely be a lengthy, wordy post about my self-diagnosis as Autistic as well as all of my experiences regarding Autistic traits, I'm going to leave a "read more" link so that you're not scrolling for ages just to catch up on your feed.

Ah, I see you've clicked "keep reading" or "read more" or whatever this site has it labeled as, now. You don't get to be mad at how long this is or how much of a waste of time reading this may be to you because you consciously clicked on the link. Therefore, I am exempt from taking responsibilities of eating up any bit of your time, including the time you've wasted reading this disclaimer.

So... Yes. I am. And it's a self-diagnosis right now.

You're probably thinking that I saw a Tik Tok clip, checked out a page on WebMD, and decided that I'm Autistic (this is in reference to a Tik Tok I saw last night that nearly made me spit out my drink because of how painfully accurate the "what people think self-diagnosis is vs reality" clip was). That is, of course, not the case.

A few years ago (likely 2018), I don't recall what it was I read online, but it made me go, "Oh wow, that makes so much sense to me," in regards to a neurodivergent trait. However, this was then I thought I had ADHD. My husband has ADHD, was diagnosed with it as a child, and because his dad forced the doctor (this was like, in the late 90s, early 2000s I think) to put him on Adderall and Ritalin, my husband does not remember 3 years of his life because he was a drooling, zombified mess. Why did his dad do this? Because his grades were bad. Did this help with his grades? No. Did his dad take him off the meds because he didn't get the desired result? Also no. My husband wasn't even informed on what ADHD was. He was simply told he had it and to take these pills. It wasn't until he (my husband) read the label saying that it could increase the risk of heart issues that he cussed his dad out and flushed all the pills down the toilet. Up until very recently, he wasn't sure if he actually had ADHD until he saw a YouTuber who was actually diagnosed with it display the exact traits he had.

But he didn't see this YouTuber when I thought I had ADHD, so my husband couldn't exactly relate, plus I didn't want to trigger anything with him on the subject.

But the more I researched, the more I realized I could be on the spectrum. It wasn't until 2019 that I was printing out articles, trait lists, etc. to highlight and put into a folder (which is thick and nearly bursting with what I've printed out to have a hardcopy of records highlighting the traits that I have, including traits my husband and my mom see in me) that I realized "I could have Asperger's."

Of course, I no longer use that term after finding out it was named after a n*zi, and I began to embrace the term "Autistic" instead.

But the thing that triggered me into going, "Wait, so it's not ADHD that I think I have, it's Asperger's?" was, like my husband, seeing a YouTuber talk about their traits and experiences. I had identical struggles, myself. (Through this same YouTuber, I also found out I'm greysexual, too! There's a name to describe my experience with sexual attraction! Yay!)

There are a lot of VERY SPECIFIC TRAITS Autistic people experience that aren't mentioned by the YouTuber or in anything that I've printed out and highlighted that I have found through various Tik Toks that I have personally experienced that simply further solidifies the fact that I'm definitely on the spectrum. When I showed the Tik Tok I mentioned earlier (I don't remember their name) to my husband last night, he was wide-eyed because the description of how that individual self-diagnosed themselves WAS EXACTLY WHAT I DID WORD FOR WORD HOLY SHIT.

I was already convinced I am Autistic, but each time I read Twitter threads of people's experiences with their Autistic traits, each time I watch Tik Toks or certain YouTubers share their experiences, it further solidifies that yep, I'm Autistic.

What's amazing is that my husband is very supportive. I'm extremely lucky to have married him. I've been a terrible masker but he loves me anyways. He never gave me shit for my meltdowns and tried to help me out, thinking I was just horribly overly stressed. Now that he knows why I've had the few outwardly noticeable meltdowns that I've had throughout our years together, he knows how to help me more, now. And while he's figured out my traits and what issues I have, knowing that I'm on the spectrum helps him make sense of why I'm like this, and he can help me accordingly whether it's to prepare for something in advance, help me calm down, etc.

(I should also add here real quick that there's a high chance I have OCD as well, but less of the compulsive actions and more of the obsessive thoughts, but I'm not entirely sure just yet if this is the case. I'm actually hoping to see someone about this but with the pandemic, I don't know when that will be.)

Now... onto the traits and experiences.

My Traits (that stand out with neon lights)(Will copy word-for-word a trait my mom or husband see in me and it will be typed in a different color.)

Having a folder that has all of my research I've obsessively looked up, printed out, highlighted what I saw in myself with one color (yellow) while highlighting what my mom and my husband see with another color (pink). I'm also using this folder to make this list as a reference because I sometimes forget certain traits I do have are because I'm Autistic. (I'm 32 as I write this, so when so much of what you think, do, and experience that you see is normal for you turns out to be an Autistic trait, it takes a while to get used to it and thus remember that because you haven't had a label for it your whole life.)

Despite being goth/punk, I dress as comfortably as I can. Textures aren't a very big issue for me, but what feels like strangulation of my body tends to be a problem. I cannot handle having the cross seams of pants feeling like I have a chopstick slowly impaling my vulva, or I can't stand how tight some shorts are that they pinch my hip joints.

I've NEVER spent much time grooming my own hair. It's either tiring, I"m impatient and want it done NOW, or both. This is why I have a Tank Girl haircut (all buzzed except for bangs), where I can basically "wash and go." (Husband does my haircuts and dyes and he's kickass at it.)

Eccentric personality; may be reflected in appearance.

Is youthful for age, in looks, dress, behavior, and tastes.

Usually a little more expressive in the face and gesture than male counterparts.

"May not have strong sense of identity and can be very chameleon like before diagnosis." (This resonates with me in the form that I never saw myself in ANY fictional character other than Tank Girl. My husband agrees with this opinion, but he also says he also sees a lot of me in Caulifla from Dragonball Super.)

I enjoy reading and films as a retreat, often sci-fi, fantasy, children's (sometimes), can have favorites which are a refuge.

Uses control as a stress management (like routines, rules, rigid certain habits, etc.)

Usually happiest at home or in other controlled environment.

I've been seen as "sensitive" by some, and mocked for crying a lot by others.

I struggled with social aspects of college and have 2 partial degrees.

Often have trouble holding a job and finds employment very daunting.

Slow at comprehending at times due to sensory and cognitive processing issues.

DOES NOT DO WELL WITH VERBAL INSTRUCTIONS; MUST BE WRITTEN DOWN

Special interests (I'll get into these later).

Emotionally immature and emotionally sensitive.

Anxiety and fear are predominant emotions (some of which might be due to possible OCD).

I do have some sensory issues such as visual processing issues at times, certain sounds, certain smells, food I think, and issues with sunlight and my goddamn retinas.

Moody and prone to bouts of depression. Both of my parents as well as my husband have described my personality as reminding them of a cat.

Mild to severe gastro-intestinal difficulties (some of which could be due to endometriosis, btw).

I stim a little such as leg-bouncing, foot-waggling, some hand-flapping, some bouncing, the "spine-shimmy," joint-cracking, or playing with my ears.

Prone to temper or crying meltdowns, sometimes over seemingly small things due to sensory or emotional overload.

Hates injustice and hates being misunderstood, which incites anger and rage.

Prone to mutism when stressed or upset, especially after a meltdown, likely to stutter and may have a raspy voice.

Words and actions often misunderstood by others.

Perceived to be cold-natured and self-centered; unfriendly.

Very outspoken at times, may get very fired up when talking about passionate/obsessive interests.

Will shutdown in social situations once overloaded but generally better at socializing in small doses. May even give the appearance of skilled, but it is a "performance."

Doesn't go out much; will prefer to go out with partner only (aka my husband).

Will not do "girly" things like shopping.

Takes relationships seriously.

There's a bit on this chart (some of you probably already know by know what chart I'm using here) that says due to sensory issues, one would either really enjoy sex or strongly dislike it. I'm in the former camp complete with a pretty high libido.

Often prefers the company of animals.

So there are the traits that REALLY stick out like a sore thumb. These come from a site regarding female Asperger traits or however it's labeled as. I have plenty more from two other articles I printed out with lots of highlighting, but the chart actually sums a lot of the definitive shit quite nicely. At some point in this list, I could tell I went "fuck it" and copied many things word for word anyways since I'll be talking about experiences later in this post.

But it was this chart that I'd discovered that I started to realize that I really am on the spectrum, and to triple check, I asked my mom and my husband if they saw any of this in me. The traits typed in green are ones I wasn't sure of and had to ask them if they saw it. I'm not always aware of how I am, who I am at times, etc. I also didn't want to lie about it, so I had to get second and third opinions.

Despite all of this, only very few people that know me IRL know about me being Autistic. This is because I was heavily bullied growing up and since I haven't exactly left my hometown, I really don't want whoever stayed in the area as well to either have more fuel and re-enter my life that way, or try really hard to relieve their guilty conscience and demand that I forgive them or some shit. I also don't want "Autism Mommies" to come at my ass either asking that I help their kid (I'm not fond of children so that's not happening, plus ableism is what fucks a lot of Autistic people over regarding of age but they won't take that for an answer) or that because they---a neurotypical person---have a child who's Autistic, then that means they know all about it and because I'm not exactly like their child then I can't possibly be Autistic. It's just a whole mountain of shit I don't wanna get into.

This next bit will be split into 2 parts. One will be my special interests, and the other will be my experiences from my past that are prime examples of being Autistic long before anyone in the common public knew what Autism actually was.

My Special Interests (Both Forever & Temporary)

The following list will have my special interests but with indicators in parentheses as to whether they are forever-interests (as in, I never lost interest in the thing) or temporary (meaning, it was short-lived be it by weeks, months, or a few years). This will be in chronological order, meaning: the order of which these have appeared throughout my life.

Barney (temporary; helped me skip preschool and become honor roll student in kindergarten though)

Halloween (forever)

the color orange (forever)

dinosaurs (forever)

Donkey Kong Country esp. for SNES (forever)

animals (forever)

Godzilla movies (forever)

monster movies (forever)

Pokemon (temporary; I still like Pokemon, but it's not as hyperfocused as it used to be)

Digimon (temporary; same situation as with Pokemon)

Dragonball Z (forever)

Sailor Moon (on-and-off)

Ultimate Muscle (Kinnikuman Nisei) (forever)

Freddy vs Jason movie (still like, but the hyperfocus was temporary)

horror movies (forever)

Transformers (temporary)

Dark Knight movie (temporary)

Harley Quinn (temporary)

Lobo (temporary)

X-Men (forever, but only certain universes, mainly the 90s cartoon, and the character is always Hank McCoy)

neon-colored stuff (temporary; kind of some sort of semi-rave/techno phase)

books (forever; this was when I discovered it's "legal" to enjoy books if you "aren't smart"; I may explain this logic I had later in the post)

sex/sexuality/sexology (forever on the first two, temporary on the last one)

BDSM (on-and-off)

feminism (temporary in regards to doing research and educating myself; I still hold the views I've developed as a result, just not obsessively researching this topic anymore)

anarchism (forever)

ecology (forever)

Pleistocene epoch (forever)

goth and punk stuff (forever after discovering what these things are all about for real compared to when I was in high school and had no idea how to ask, who to ask, or where to look this stuff up at in rural Ohio)

Hellblazer (temporary)

Serbian heritage (on-and-off)

bats (temporary)

arachnids (forever)

teratophilia (forever; finally have a word to describe this damn kink)

gardening (current; unsure)

Russian language (current; unsure)

DIY things (forever)

Towards the end, it may not be in the proper order thanks to slowly losing my damn mind being cooped up mostly in my room on this farm since moving back here in 2014. The two that are "current;unsure" are ones I have a hyperfocus in right now, but I don't know if this will be temporary or not. I certainly hope not, especially considering how useful these things will be. And while I have gardening as one of them, I haven't properly begun yet because I get empty promises from my parents where they claim they'd help me, not to worry about it, then get irritated when I ask where the help is and they suddenly can't give me the help when I told them I needed it.

I should also note that I don't exactly have an encyclopedic knowledge in a whole lot of these interests that are forever-interests because I'm normally exhausted just trying to exist with minimal trouble from people. I'm hoping this will change. The things I know I have an almost encyclopedic knowledge in would be Dragonball Z, animals/ecology, and... a-and that's it. That's really it. That's all I've got because Dragonball Z was so profoundly different compared to other cartoons I've watched in the 90s that it was a wonderful escape, and I grew up around animals, taking care of animals, and watching nature documentaries. The stress I went through growing up has caused my memory of some of that wonderful animal knowledge to be lost and what could be re-gained may be easily forgotten again, hence why I need to narrow my focus for what I'd like to be an ecologist for. While I love paleontology, I want to help the living world's ecosystems and environments, too. I'd love to go back to school for this stuff now that I'm more informed of who I am and what I want in life (as opposed to being forced to pick a college major while still in high school while I'm just trying to survive the concept of existence).

In terms of collecting things pertaining to my interests, a common pattern you'll see me have is a very slowly growing Hank McCoy collection. This is largely because there isn't too much stuff made regarding this character. (There also isn't much stuff I can find that involves Piccolo, Cyndaquil, Donkey Kong, giant ground sloths, etc. that isn't already snatched up by other fans.)

Now, I'm going to get into the list of experiences. Some of which will talk about my special interests, but I also really want to talk about my struggles, too.

Experiences That Screamed "I'm Autistic"

In gradeschool, I was friends with someone who probably wasn't actually a friend and her mom made her hang out with me since I didn't really have any friends. She has told me several times that she didn't want to be my friend anymore with some kind of hostile catty smile, but I just.. I wasn't getting it. Because there was a smile. Why say that with a smile? After all we've been through? Then she's back to being my friend the next week. She really wanted to hang out with the popular girls (yes, there were cliques in 90s American gradeschool) and has done countless things to sabotage our friendship such as telling me Barney is a fake, Donkey Kong was a real gorilla who hung himself, etc. And I believed all this shit, too, in an attempt to still be an acceptable friend. She even told me that I couldn't be a witch because I liked toads so much (toads were the only wildlife I excitedly interacted with in my back yard on a regular basis).

I love Halloween for many reasons, but one of them (aside from my favorite color being involved) was the fact that it was acceptable to wear a mask. I love (and still do) the idea of covering my face because I feel less "naked" to the world. So this pandemic had a small plus for me in the form of mask-wearing outside of Halloween has become somewhat more acceptable.

In 5th grade, another classmate who had more obvious Autistic traits and was diagnosed with Asperger's at the time was an asshole to me. They would constantly give me shit and bully me for whatever reason. When I finally took a stand, the teachers on duty at recess called me to the bottom of the hill, forcing me to look at them WITHOUT allowing me to have my hands up to block the sunlight that hurt my eyes, and were able to manipulate me into "admitting picking on so-and-so for no reason" because I chased them around the playground where a group of girls (the same cliquey assholes the former "friend" wanted to mingle with) had to group-carry me away. They're the ones who snitched and they gave me those same hostile smiles. That's when I learned that not all smiles meant good things. I was 10.

I sometimes "lose the ability" to ask for help long before the "help" I ever got in any circumstance was just me being met with frustration by whoever is trying to "help" me or I'm met with "sorry, can't help you there. (The former being with homework or school work, the latter being with going to authorities about bullies.)

Growing up, I was never girly (or girly enough) and I've tried to, but I failed miserably. My special interests would roar through and because it was too odd or different or annoying, it gave other girls fuel for bullying me with.

Regarding the lack of being girly enough, I was at a pool party with the former "friend" mentioned earlier and she started this "game" where she and the other girls would leap into the pool saying, "I love you, Leonardo!" This was in 4th grade and in reference to the Titanic movie, which at that point, I'd never heard of, because I was too pumped for the latest Land Before Time sequel. So when I leapt into the pool, I said, "I love you, Raphael." All the girls were confused, asked who that was. I then asked, "Aren't we playing Ninja Turtles?" Because the only Leonardo I knew of was a fucking Ninja Turtle, goddamnit. Who let you brats watch that shitty romance film anyways? Boring as fuck.

Aside from the occasional weekend visits or sleepovers at the former "friend's" house, I didn't get to socialize much, so I would spend most of my days (especially in the summer) watching what was on TV or watching from our very large VHS collection. During which I would make mental notes on how certain characters acted or what they said and try to remember that to mimic them in a social setting, which would be out of place because I'd be so focused on mainly the dialogue that once it prompts me to say the thing, they don't respond how I expect them to and then I'm at a loss.

I was very ignorant of music and didn't even know the concept of independent or underground bands existed. Plus, rural Ohio is a cultural wasteland. Otherwise, I would've gotten into metal, goth, and punk way earlier in life. So I thought that bands that existed were because television said so.

Speaking of an odd logic... If it was taboo or bad to talk about, I thought it was illegal. Thus, I thought any knowledge about sex was illegal and that it was supposed to happen "naturally."

I also thought that, because I wasn't considered as smart by my peers, some teachers, and even as such in the form of an insult from my parents from time to time (despite what they claim NOW), that also meant I wasn't allowed to enjoy books, because only smart people are allowed to enjoy reading. So therefore, it would be illegal for me, a not-smart person, to enjoy reading a book. So I had to focus on the pictures because if I enjoyed reading, somehow everyone would know and then I'd get into trouble.

I also thought it was illegal to talk about periods.

I socially struggled BADLY when I got to middle school because my brain was like... 4 years behind? How the fuck do people know all these bigger words? Or complex issues? This was also when I had to start suppressing ALL urges to cry because at that age, I'm not "supposed" to cry over everything. So I still, to this day, suppress it to the point of guaranteeing inducing a headache. Because I've always caught shit for crying.

Middle school was when I met an oppressive "friend" who was obsessed with me because she had a crush on me and was rather controlling of who I could and couldn't talk to and got pissy if I got close to making a new friend. Because I was desperate for a friend that wasn't like the former "friend," I allowed this abuse into my life.

High school was me just trying to survive. By the time I got home, I was too mentally exhausted to enjoy anything short of watching TV or whatever was rented from Blockbuster.

My brain was still feeling like it was years behind, and I struggled to keep up with whatever was supposed to be something I knew about, including the concept of masturbation.

Like I said earlier, anything sex-related might've been illegal to talk about, and because masturbation was still kinda taboo, I feared I'd get in trouble, but my teenage hormones compelled me to do it a LOT. It consumed my free time almost like an escape, a form of stimming, but I was shameful of it to the point of suicidal thoughts.

The former bullet was due to being raised in a christian household. My parents didn't have such views on sex like this, but I was afraid of being in trouble for asking, took to the internet, and caught some misinfo about how immoral it was. I mourned I'd be going to hell.

Speaking of religion, I thought it was illegal to change your religious beliefs, and there was only Judiasm, Muslim, and Buddhism outside of christianity (I'm Pagan, now).

While I was excited to get away from my parents presumably for good after high school, college was a new form of hell. The sudden, dramatic change in environment and lack of ANY preparation for living like an adult on my own caused me to mentally/socially/emotionally malfunction. I had outbursts I desperately tried to suppress, I felt stupid because everybody sounded smarter than me, I didn't actually want to go to art school but wasn't smart enough for anything else and never really bothered to better my artistic skills and thus felt like I shouldn't be there anyways, I struggled to fit in better, I had no idea how to function that certain habits such as neglect of my own dishes on my desk developed because I LITERALLY COULD NOT SEE MY OWN MESSES DUE TO THE STRESS I WAS EXPERIENCING. This was 3 or 4 long YEARS of this.

Attending art classes mostly run by very demanding (and demeaning) teachers while my art skills weren't up to par added to this stress on top of me not actually wanting to be THERE in the first place, just away from my parents.

I nearly ruined a friendship with a roommate because of my struggles. I'm not even sure if she is aware of my Autism because I'm afraid to approach her about it for some reason.

Plenty of times throughout my life where I'm loud and don't even realize it.

I've info-dumped on my parents, but right now they half or completely ignore me.

I've tried making eye contact, but it's like staring in the sun not in the sense of pain, but in the sense of by natural reaction looking away. When I force myself to make eye contact, I'm spending so much focus and effort into doing that to the point where I am unable to pay attention to what the person is saying. Instead, I stare at the mouth so I make sure I hear correctly the words they're telling me.

Each time someone is mad at me and gives me the silent treatment, and I inquire what I did to piss them off, they get madder because I'm somehow supposed to immediately know when I fucking don't. Then, half the time, they continue not telling me and I have to hear it from someone else. This further confuses me as to why they don't just simply fucking tell me.

I've annoyed people to listening to the same one or few songs over and over again. A lot (currently obsessed with the Sunset Overdrive and Tank Girl movie soundtracks).

I can "smell" the heat outside on a summer day.

I can smell other people's unique scents sometimes (especially when in someone's house; also experienced this in other people's dorms).

I can't remember what grade this was, but in high school, we went to some kind of space camp facility thing, and our class was split into two groups: one group was the group who was on Mars and ready to come home, the other was on Earth and can't wait to go to Mars. I was in the former group. My job in this little fun display interactive room thing was to examine the isotopes and report... uh.. I can't remember.. Report something that was off. Everyone else was dicking around with what they're supposed to do, and I was actually doing my job, and then said something, like I was supposed to, if I found something that was off (I don't remember the specifics). When the scientist who worked at the facility praised me on "saving the crew," I caught this look from the entire class a look I can't quite describe other than they didn't seem to like the fact that I did a good thing and was being praised for it instead of any of them (or they were shocked that a "dumb girl" like me could achieve this and get praise for it, I don't know.. hard to tell). This was a science class field trip, but despite this, I didn't have an interest in space, and still didn't feel I was smart. (Come to think of it, I think this was actually an 8th grade field trip, I can't remember.)

Just discovered this today: I'm actually very easily overwhelmed that could trigger a meltdown when I wake up. I don't know for how long until that point passes, either. But this could also be explained with how I've reacted to certain alarm clocks (the ones with the bells just induce pure rage in me). Either I will be on the verge of a meltdown or I'll have a fucking headache all day. Normally, I just wanna drink my coffee and either read or practice a little on Duolingo.

I don't always have enough room for a lot of info in my head for things that I like, so I have to carefully narrow shit down. Right now, I'm trying to figure out what to do about my urge to get my hands on some monster movies while making sure nothing else I've retained info for wanes. Not sure if this is due to stress or what. But apparently I have designated compartments for certain categories in my brain. If I get into monster movies, continue to work on my knwoledge on ecology and paleontology, and gain more knowledge about arachnids, that shouldn't impede on the "language" category, so whatever I learn in Russian will remain safe.

Interest "Webs."

I have what I'd like to call an "interest web." My special interests in one thing can lead me to having an interest in another. I care about nature, and I also care about paleontology. Paleoecology is something I'd like to dip my toes into. But because this all involves nature, I have an interest in botany (though it's still intimidating so I'm sticking with local native trees) and arachnids (after conquering my fears and learning more about them). So the web stops at arachnids there (no pun intended).

Back to ecology and paleoecology...

I have a major interest in the Pleistocene because it was just before we humans started writing shit down. Hints of that era echoes within our current environment, from the pronghorn being "unnecessarily" fast (due to miracynonyx, the "American cheetah," which is now an extinct cat) to avocados not seeding like they should without human assistance as well as the yucca trees (Joshua trees) going into retreat thanks to the absence of giant ground sloths.

But the planet is warming, and we could use all the help from plants that we get, especially when it comes to making sure that permafrost stays frozen. So there's this "Pleistocene Park" project taking place in Russia, and one day, if I get into the field of paleontology, I may want to chat with those involved in that project, but one can't expect every other country to know English.

There's also FROZEN PLEISTOCENE MEGAFAUNA CARCASSES BEING FOUND IN PERMAFROST, too.

On top of all of this, Russia's northern lands will become habitable for humans if shit hits the fan and the planet's mostly fucked, so it's still nice to know the language.

See how all of these interests intertwine? (It also helps that since I am of Serbian heritage but can't find accessible resources to learn the language and I wanna know a Slavic language that Russian is kind of accessible. It also seems to be the only Slavic language "commonly" found in colleges when it comes to foreign language courses.) This is why I call them "interest webs." Not sure if other Autistic people have them, but it's something that I have.

The second one could simply involve Halloween, punk, goth, monsters, and teratophilia with Halloween being the gateway because my favorite color is orange.

Just thought this would be a fun thing to touch on real quick.

My Sensory Traits

I do experience some sensory traits, but they're not intense like some people would assume (unless I'm simply not noticing how intense they can be).

I can "smell" the summer heat, which was something I thought everybody else experienced but I'm wrong.

My retinas hurt in bright sunlight despite not looking anywhere near the sun, which I also thought everybody else experienced.

Drinks taste different or off in some way if they're not in a particular mug, glass, etc. that the drink is supposed to be in. (I have certain mugs that I enjoy my coffee in, but the other mugs? They taste off. I can't explain why. I have ONLY TWO acceptable little tumbler glasses for orange juice.)

Breakfast food does not taste like breakfast food unless it's on this one specific plate from my childhood.

Dinner can be iffy on certain plates, but the safest go-to is the knock-off blue willow plates.

Lunch is acceptable on anything, but if I'm having simply a sandwich, it must be on a small plate.

I have specific forks I'd prefer to use because of how they feel in my hand, how the food-part feels in my mouth, and how the fork itself tastes.

Gotta have cinnamon in my coffee. I just do. It's not coffee without it.

I cannot fucking handle hair snippets of any size for any reason on my body. This is why there is a rigid procedure to where my husband must buzz my hair over a paper-towel-covered sink (to avoid clogging the drain) while wearing a particular tanktop Harley Quinn night shirt, and then I must shower immediately afterwards. During the haircut, my skin itches like mad like I'm being poked by the hairs directly even in places where hair snippets have never, ever gone.

I'm overly sensitive to the cold to the point of pain, especially in my fingers and toes.

Also cannot brush teeth with cold water because it's so painful (this was LONG before I had dental issues and persists to this day). Even my tongue hurts from it.

I'm picky as fuck with candy. Trick-or-treating was sometimes difficult because all I cared about was either orange-flavored stuff, or chocolate. Only specific chocolates, too (Krackle, Mr. Goodbar, Crunch, Butterfinger, Reese's, that was it.) Skittles were okay, but a lot of the baggies I got had a LOT the red ones and the red ones suck. Can't stand the other candies. (But my tastes have changed since then, and I opt for European chocolate from Aldi's as they are far superior, especially Moser Roth's 70% dark chocolate and Choceur's coffee and cream chocolate.)

Speaking of candy, the Whopper's Robin's Eggs tasted better than regular Whoppers and I will never be able to explain why.

Despite loving orange flavored stuff, I have trust issues when I see an unlabeled orange candy because there's the dangerous chance it could be fucking peach flavored. *gag* (I like real peaches, but the artificial flavored ones suck balls.) Due to my dental situation, I cannot enjoy very much in a way of candy, and the only artificial orange flavoring I CAN enjoy is through Vitamin D gummies... And even then, EVEN THEN I have to worry about the fucking peach flavors if I have to go with a different brand because we can't get our hands on a bottle from Simple Truth.

Artificial cherry flavoring is death.

The ONLY flavored medicine that was acceptable to me was orange (of course) and those dissolving strips that were grape-flavored that they don't fucking make anymore because fuck me that's why. Everything else was peer-pressured to do shots kiddie edition.

The different colored coatings on M&M's taste different from one another and I cannot explain why. It's very subtle, hardly noticeable, BUT I CAN TELL.

Peanutbutter is fucking amazing.

The smell of peanutbutter is fucking not.

There are these frozen meals my husband gets for days he doesn't have energy to cook and one of them (all from the same brand) smells like fucking hell.

My husband's Nissan Cup Noodle ramen overpowers my incense despite what other household members say.

I love incense, especially dragonsblood, "coffee time," pumpkin spice, raven, and rain.

All of the autumn scents or scents associated with autumn are orgasmic to me.

The smell of artificial cherry is death.

I would love to have perfume or body spray of Play-Doh.

I can compare smells of some places to others, such as the library branch I frequent smells like my gradeschool, as do SOME of their books' pages, and when my husband and I walked through this hall-like tunnel-like storefront in downtown Pittsburgh, I said it smelled like my grandma's basement, and he thought the same, so we're in aggreeance that all grandma's basements smell the same. Except for my Baba and Deda's. Their basement smelled like they actually still enjoy life and had their shit together.

Speaking of gradeschool smells, my gradeschool had two directions of classrooms, one led towards the gym, but the hall off to the side was carpeted, had some nice colors, and held 2 kindergarten classes and 2 first grade classes. That section of the building had its distinctive smells. The other direction led to the office, the cafeteria, and the hall with the 2 classes of grades 2 through 5 plus the preschool and the art/music class was. The smell was different in all classes EXCEPT for the music/art class, and I never went to preschool so I wouldn't know what that smells like.

ALL PRINCIPLE OFFICES SMELL THE SAME. HOW.

I could smell when my husband accidentally put in cinnamon when he thought he grabbed paprika in a dish that I liked. He was terrified of telling me. That was a happy accident and it became a permanent ingredient. He was mortified and shocked that I could smell his whoopsie in my dinner he made me.

I can also smell the cinnamon they use in Little Caeser's pizza crust. Yes. They use cinnamon. But I was the only one to notice.

Honey is like peanutbutter: it tastes amazing. But holy shit fuck that smell.

Gas stations smell like death, sadness, and questioning life's choices.

No two people's car interiors smell alike.

I can smell when it will rain soon, especially if it's about to storm.

I'm the one who noticed that hairy white oldfield asters smell like cake batter.

Dominant yellow filling my entire vision can be sometimes painful.

I used to be able to "hear" the color yellow in my head so much I thought yellow actually made a noise. It was a particular shade of yellow, and it made this Playskool toy-like clicking bell ringing noise, but really obnoxiously, almost painfully. I don't know how to describe the shade other than "cloudy pastel lemon?" It looked like the fucking lemon-flavored medicine I had to take as a kid.

My parents tried mixing in this cherry flavored death medicine in with my orange soda thinking I wouldn't know the difference but I did, so I dumped it down the drain and opened a new can because that can of Big K orange was fucking ruined.

Orange is wonderful to my eyes. But it's a hard color for me to find when it comes to getting things in a particular color. My back-up colors are red, green, and purple.

The sunlight hurts my retinas, even when I'm not looking at the sky at all, but the pain intensity increases the further I look up on a sunny summer day. This has been like this since childhood. Prescriptive sunglasses shouldn't be fucking expensive and should be covered by healthcare insurance.

I have to try really FUCKING hard not to stare at someone's muscles in person because ugh... Good thing I rarely see anybody who's well-built. (No really, this isn't even really a sexual thing, I'm so fucking fascinated and once I realize "oh, so that particular muscle looks like that from that angle", I get a glimmer of hope that I MIGHT be able to draw something humanoid since I suck at drawing people.)

Orange trees as so pleasing to the eye, and these are much more socially acceptable to stare at, lest I'm in person and the property owner might think I'm plotting to steal some (luckily I've never been anywhere near a place that grows orange trees).

Neon lights are amazing and I want them to come the fuck back. I swear, stores were so much more enjoyable of an environment when they were common. Such lights improve my mood in a way I cannot describe. I'm no longer in a hurry to get home if I am in the presence of neon lights.

Sunny days during winter are painful because the sunlight reflects off the snow. I'm painfully blinded if I look outside or go anywhere.

I cannot handle the sight of someone having boogers/snot hanging from their nose, not the sight of someone vomiting, nor the sight of an syringe needle piercing flesh.

I cannot handle the sound of alarm clock bells. I have woken up in a rage and been in a bad mood I try so hard to suppress for a good portion of the day. If I hear an alarm clock bell now these days, I wanna take it and chuck it across the room regardless the time of day or if I'm already awake. It's not so bad if I hear it from a video. In person? That's starting a war with me.

Children crying or screaming (especially babies) are almost painful to me and triggers my fight-or-flight response.

The reason why I was the loudest mellophone player in marching band was to drown out hearing the fucking trumpets. And I did; I was louder than the trumpets. (I quit marching band my sophomore year but for different reasons.)

Much of the music from the 80s that gave it that sound that definitely said it's from the 80s is very pleasing to my ears.

I love punk music for its messages, lyrics, and energy, but goth always puts me into a headspace where I feel like I'm at home; I'm at peace and want to cuddle the monster under my bed.

However, some punk songs can hit deep or strong and live rent-free in my head, such as Anti-Flag's "Racist," Bikini Kill's "Rebel Girl," and Skarpretter's "Nazi Scum."

One particular artist's voice I cannot get over because his is the first voice of any kind that makes me wanna fan myself is Peter Steele of Type O Negative. My favorite song, however, is "All Hallow's Eve" because his voice, the subject, and the lyrical content.

I'm able to hear something off in the oscillating fan my husband likes to use before he notices it.

I'm the one who can hear coyotes at night (doesn't help my mom wants to blast westerns to drown out the world and I'm back here in my room away from that shit though).

I can hear the branches scraping against the house, gently making creepy noises before I realize what the fuck it is, BUT NOBODY ELSE HEARS IT.

I can recognize the call of a robin because we had so many at the house I grew up in, and nobody else in this family fucking noticed.

I tend to notice the sound of the rain over all the house noise first.

I don't like tight clothing, which is why I prefer bralettes because my tits hurt.

If I could, I'd go without the bra because the band can sometimes suddenly feel tighter than it actually is, but because I have large nipples, I kinda need that bra for a bit of protection.

Shorts can be tight around the crotch, hip joins, and lower belly region, and that's a big no-no for me.

I'd prefer baggy pants, honestly.

Can't have tight footwear. No.

The seam at the top of socks or tights hurt my pinky toes if the whole sock/tights shift that way.

I already covered the hair snippet thing so since this is the sense of touch, another body hair thing is I kinda don't wanna shave my pits anymore because they are extremely itchy when they grow back. HAVE to shave my crotch because if I don't it gets horribly itchy, and my thick, fast-growing hair weaves into underwear, gets caught in pads, etc.

Ah yes. Pads. I hate them, but they're far more acceptable than a tampon or a cup because I have vaginismus.

Certain fabric textures are itchy as hell. There's a black shirt I have whose collar and cuffs are gorgeous but I have to wear something underneath to avoid feeling itchy.

Winter is hell for me here in the midwest, as I am very susceptible to the cold to the point of pain, especially in my fingers and toes. I become very slow, too. I feel like I can't get warm enough most of the time.

Air conditioned places in the summer feel almost similar, so I don't always wear shorts if I'm expected to go into, say, a Walmart with my husband to pick up everything. I'll shiver.

(We're gonna get into TMI territory here.) Can't masturbate by hand unless I've got a nitrile glove on because my brain only focuses on what my fingers are touching more than what my cunt feels.

Can't have any sex with my husband without anything brighter than low-light because things can be visually distracting in the room, or lights can suddenly feel way too bright to me. (Halloween string lights or those LED rope lights with adjustable brightness features and colors are excellent for this situation.)

In Conclusion

This is all that I've figured out so far. None of this hit me at once as a realization when I figured out that I'm Autistic. This took a while to realize it, and the realizations were mostly at random times through examples of other people experiencing it on the internet or through me going, "Huh, is that an Autistic trait?"

There may be even more that I'm currently unaware of or have forgotten to type here.

I apologize for how extremely lengthy this was. This took all day to type because of having to get up and do other things that needed to be done. One of the reasons why I really wanted to type this is because it's much easier to organize this on a computer, and I am absolutely shit at organizing files on my computer.

Unfortunately, while my husband is wonderful in supporting me, my parents aren't exactly all that great at it. Especially my dad, who is either vaguely dismissive or outright "forgets" that I'm Autistic (he honestly just... doesn't care, and tries to make things convenient for him at the expense of others most of the time). My mom... I'm not real sure. There are times where she seems to remember and others where she doesn't. I'm honestly wondering if they don't like knowing that I'm Autistic because that means my brother would have been as his traits were far more obvious than mine.

I hope that whoever is questioning whether or not they're Autistic has found this helpful at least in the sense that it would point you in the right direction on where to go next, but I would highly recommend checking out online Autistic communities, as that's where I've discovered that I'm on the spectrum.

[grison-in-space]

So the thing is.... yes, this is all true, but also framing this thing as something that is Really Real can help you access treatment to help you stop experiencing this, or at least stop experiencing it so painfully. The experience we call rejection-sensitive dysphoria is just a trauma reaction to stimuli a person has learned are likely to cause emotional pain, and if you have ADHD or another undiagnosed neurodiverse position, you are especially likely to develop these kinds of traumatic responses as a result of being expected to do things you cannot do and then being blamed as a result.  That’s the ableism that is being discussed here. (Note that late diagnosis isn’t actually the only reason for this--lots of people are diagnosed early, as I was, but also raised by parents who feel very strongly that accommodating the disability in any way or even admitting it are deeply shameful things that, I don’t know, somehow let the disability Win and are to be completely avoided. This, too, can cause this effect.)

One thing that is important to note about stress, trauma, and PTSD generally is that a stressful event is much more likely to become a lasting traumatic event as a consequence of whether you feel judged to be responsible for the stressful event by people you trust. This is a big reason why rape is much more likely to cause lasting trauma than, say, muggings: we live in a culture that is much more likely to treat a rape victim as somehow responsible for someone else choosing to hurt them than someone who has had goods stolen. If you are told “it’s not your fault” and receive care from people in your social circle, the odds of developing a lasting trauma dramatically fall.

It is also worth noting that repeated traumas from early childhood create a PTSD syndrome that is dramatically different from simple PTSD and is now being called “complex PTSD.” Traumas that stem from something like ADHD fit this mold, not the simple PTSD mode, and are more likely to be minimized and not viewed as being actually traumatic because they’re just part of your baseline existence, something you are responsible for, but are just inexplicably horrible about handling and dealing with. Complex PTSD is also, mysteriously enough, capable of creating the same set of symptoms previously diagnosed as “borderline personality disorder” but unlike BPD it is treatable, just not with cognitive behavioral therapy. The problem isn’t the way you think about yourself; the problem is the way you have been treated and the limbic system reactions you have learned to have to common experiences in your life.

I agree with y’all: I don’t think RSD is inherent to ADHD; I think it’s just a trauma response from being repeatedly treated as if the things you struggle with are just laziness, or idiocy, or impulsiveness. It’s a common kind of systemic and complex trauma that often appears in people whose neurotypes break executive function. I see it in non-ADHD autistics, too.

But.

I also noticed what you all are saying about the rationale for framing RSD as an ADHD thing when I was bringing articles for my psychiatrist because I wanted to try clonidine in order to manage this mental health symptom. I mean, I fully believe Dodson is onto something--this particular med really can work for this particular problem, and this really does seem to be a common symptom in ADHD populations, even if I think he is badly overgeneralizing--and I was able to use his work to use my ADHD diagnosis to convince my psychiatrist to let me give it a try. And it’s been really, really worth it! I would not have had the ability to convince my psychiatrist to trust me if I hadn’t been able to shorthand--”well--I want to try this because RSD is clearly something I am struggling with--yes this is indicated for me, cf the ADHD diagnosis and autism from ages 7 and 12 respectively--well no I didn’t tell you three years ago when I started seeing you--no it didn’t seem relevant!--well that’s because I was explicitly trained to be very wary about who I disclosed this information to up to and including professionals and because I’ve been unconsciously trained by experience to be careful about same because experiencing ableism has a cost--well okay, let’s try it!”

Having Dodson’s work to point to let me give this supportive (cheap, non-controlled, very accessible) medication to help me treat this system, instead of letting it continue to cripple me while I tried to struggle through an objectively pretty traumatic set of circumstances.

Ironically, I had the thought to try this while reading a book about surviving trauma, because the author in that book (Bruce Perry) had thought of it as a supportive treatment for helping children process and heal from traumatic situations because clonidine and other alpha agonists dampen adrenaline responses, allowing you to deal with situations that won’t hurt you but are triggering you without also trying to fight through a BIG EMOTIONAL RESPONSE TO THREAT. Right now, this work on systemic trauma (which does have significant backing in the literature, and I will go hunt for it if anyone wants to hear more on a specific topic; I’m just firing off a quick ramble here) just flat out has not trickled down to medical providers. So as far as I am concerned, sharing the information about the experience, naming it, and pointing out that there are ways to treat this specific symptom is wildly important. It’s just also important not to pretend this is only or even mostly a thing that is specific to ADHD, even though the person who is most accessible to medical practicioners keeps insisting it is without really understanding why it’s happening.

So, like. Go forth. Use Dodson to convince your mental health providers to provide you with access to relevant supportive care as it is relevant to you to do so, and do so with my blessing, at least. But don’t also lash out at other people who are going “wait, fuck, complex trauma--that is... that is a thing?!?” or worse, other people going “complex trauma about being asked to do certain things I cannot do but no one believes me is a thing?” We are all trying to navigate a wildly unfair world. Let’s make sure that we stand in solidarity together as much as we can.

rsd is not a condition. rsd is not a diagnosis. rsd is not a medically recognized symptom of adhd and the experience “rsd” describes is not exclusive to adhd at all. this does not mean people with adhd can’t experience rejection sensitivity, but “rsd” as an “adhd” thing is a concept with no emprical backing developed by one man, with claims of it being brain-based without any evidence behind that claim, as well as many other claims surrounding the “nature” of rsd. adhd is a condition characterized by executive dysfunction, which can involve emotional dysregulation, but acknowledging that is different from the framework of “rsd” and seeing people on this site pass this around without critical thought and even claiming rsd is “adhd only >:(” makes me sick. you’re buying into what’s basically pop psychology instead of scientific research.

emotional dysregulation and rejection sensitivity is by no means adhd exclusive, and people with adhd experiencing those things doesn’t need to have its own special label or whatever when there’s no meaningful difference between someone with adhd experiencing those things and someone without adhd experiencing those things. that’s not logical and a ridiculous mentality of “rsd is adhd ONLY because our rejection sensitivity is SPECIAL” completely goes against building common ground with other neurodivergent people for petty and invalid reasons.

the amount of misinfo going around about adhd on this site is uncanny. please investigate claims others make about disability and do your research - actual research, which doesn’t include tumblr posts that lack citation and oft unreliable sources like ADDitude Mag and WebMD. it would be INFINITELY more productive to operate on a shared experience of emotional dysregulation and rejection sensitivity among varying groups of neurodivergent people than to feed into this nonsensical idea of “adhd-only special super rejection sensitivity.”

[neurodiversitysci]

A blogger I like, ADHD Millenial, wrote a fascinating post called “What Happens to Adults With ADHD After They Get Diagnosed.” Some highlights:

“What about some hard data on what happens to adults with ADHD after they get diagnosed? Well, look no further than a new study from researchers at Uppsala University in Sweden. 

...In the study, the researchers tracked a group of 124 adults with ADHD for six years after their diagnosis. The researchers looked at whether these people used medication, how their symptoms changed, and what their lives looked like six years later.

Maybe the most significant finding is that, for these people, things got better over the course of the six years. In particular, they scored higher on a measure of “global functioning” – basically, how they functioned overall in all parts of their lives – when the researchers followed up with them. ...

...This appears to hold true even for adults with ADHD who have multiple other psychiatric disorders like anxiety or depression.

Some of the adults also experienced changes in their ADHD symptoms over the six years. In fact, a significant minority of the adults (about 1 in 3) no longer met the criteria for ADHD when they were evaluated the last time.

The vast majority of adults who were diagnosed start taking medication once they received their diagnosis, but about half stopped. Whether people were taking meds or not didn’t seem to affect whether their ADHD symptoms dropped below clinical levels over time....

I think it’s nice to know that whether ADHD symptoms go away or not, the functioning of adults with ADHD typically does improve over time, presumably as they develop coping skills and a better understanding of the disorder.”

Finally, some good news from ADHD research.

*BTW: the paper [open access] doesn’t explain what appears on the “Global Assessment of Functioning” scale, the main outcome discussed here. They also don’t describe  the Health-related Quality of Life scale, the Alcohol Use Disorders Identification Test, and the Drug Use Disorders Identification Test. However, the subject matter can be better guessed from the test names. The authors do describe one of the other measures they use, the Sheehan Disability Scale:

Disability and impairment were investigated by the Sheehan disability scale (SDS) [35] covering three domains: work/school, social life and family life/home responsibilities. SDS has recently been psychometrically evaluated in adult ADHD [36].

Participants were also interviewed, and many gave researchers permission to look at their medical files.

Another warning about the study: they use the term “remission” for no longer meeting criteria for ADHD, as if it were a disease. That was annoying, as ADHD can be extremely disabling, but it’s not a disease.

I should be happy, and I am.

But at the same time, the news also makes me sad. I probably wouldn’t be one of the success stories.

I was diagnosed about eight years ago now, and I’ve learned a lot of skills for managing my life, but I still rely on others to take care of myself.  Much of what I learned could have just  as easily come from growing up and making the effort to learn from experience. 

I don’t think my growth had much to do with being diagnosed or better understanding how I function. Before being diagnosed I already knew a lot of the principles of what works for me and what doesn’t, I just didn’t know why. I couldn’t explain it and ask others to accept it, the way I can now. On the flip side, even understanding the whys better, I still have trouble actually applying what I know to concrete situations--new jobs, new life responsibilities, new places to live, etc. I still have trouble managing my emotions, occasionally treat the people I love badly when hurt or angry, hate myself for it. I often lack the energy to manage work AND relationships AND basic self care, struggle to manage bowel and bladder issues, etc, hate myself for that, and so on. 

My ADHD symptoms have gotten no less severe. As old difficulties disappear, at least as many new ones appear. If anything, my impulsivity is much more obvious, to the point that I wonder if I’d be diagnosed combined type instead of inattentive type were I to be re-evaluated now. 

Medications help, but they don’t erase any of these problems. They just give me the energy to deal with them. If anything, on meds, I am more impulsive, and have more stress-related physical ailments. (Perhaps people in the study feel similarly, though, if their levels of functioning had no relationship to whether they were taking meds or not?).

Of course, outcomes varied across people. Maybe for some, just being diagnosed and learning about ADHD was enough to accept themselves and function better. These are the success stories. For others, it might take more time, more work, more support, more self-acceptance. Maybe being diagnosed and understanding how ADHD works isn’t enough to develop coping skills. Maybe it’s just a necessary first step.

Or, maybe I’m just unusually deficient.

TL;DR: don’t feel like a failure as a person with ADHD and berate yourself, even if you aren’t one of the 33% who cope so well they no longer look like they have ADHD. Diagnosis and research won’t magically fix everything overnight, but it’s still worthwhile.