Calling All People with ADHD!

Hey guys! So, I’m doing a rewrite of one of my stories and my main character has ADHD. I don’t have it myself but I know people who do and I’ve been doing some of my own research. I want to make sure I write it respectfully and accurately, so I’d like to hear some of your personal experiences with ADHD if you’d like to share. What are some common misconceptions about it? What do you think people miss when writing characters with ADHD? Anything you’d like to see more of in terms of representation? What are some struggles that are often overlooked? I appreciate the help!

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Hi there,

This seems better suited in #story-services:special-services so I’ll go ahead and move it over there.

Thanks for understanding,
Fray - Community Ambassador :frog:

I have ADHD, and I had no idea until I was 21 and in college haha. I’m certainly no expert on the issue, but I have some real-life experience.

I’m not hyperactive and ultra-energetic all the time, in fact I get burnt out a lot because of the energy it takes to focus on certain things. I hyperfixate on certain hobbies/subjects/thoughts, and I just kinda forget the rest of the world sometimes. My memory is super spotty. Basically, I either feel several steps ahead or several steps behind the rest of the world.

Idk if that helps at all haha, but if you have any specific questions, I could maybe give you answers until more qualified people show up!

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Hey, I’m glad that you’re doing the work of research and finding personal experiences. It’s so great that you’re taking a thoughtful approach to topics such as these.

I think some personal struggles is that (and this may be for others as well, not just for people with ADHD) is that I can’t blame everything on my ADHD. I think sometimes I make excuses to myself, like, oh, that’s just because I have ADHD. But it’s hard to say what is because of the condition or just that I need to try harder.

That’s one thing that I’ve noticed.

I’m happy to answer specific questions if you have 'em

Also, this thread might be helpful for ya. :slightly_smiling_face:

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This is so me!

WE DON’T BECOME HYPER SQUIRRELS WHEN WE HAVE CAFFEINE
IT OFTEN CALMS US DOWN

OH I totally forgot about that xD
But yes. Yes. yes.

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Coffee makes me anxious, personally. It takes all that energy and multiples it to a point where I feel like I have to run or something… it’s really awful! I don’t drink it, obviously. It’s genuinely very upsetting.

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I’d like to go through the symptoms for you and discuss my experiences with each one, if that’s alright!

Keep in mind, of course, that everyone has different situations and what’s true for me may not be true for someone else. I’ll try to mark everything that’s generally true, and also things that are personally true. Many people with one mental illness also get diagnosed with another, so it’s possible that it’s also my Other Problems compounding. But here we go. I’m going to use the DSM 5’s symptoms and diagnostic criteria for ADHD, and if it’s helpful to note, I am professionally diagnosed–though I had very, very strong suspicions beforehand.

  1. Inattention: Six or more symptoms of inattention for children up to age 16, or five or more for adolescents 17 and older and adults; symptoms of inattention have been present for at least 6 months, and they are inappropriate for developmental level:

One of the things people often fail to discuss re: ADHD is the frustration. I can promise you I’ve never wanted to be the only person in the meeting who’s hearing half of what you say. It is never my intention to miss instructions or start daydreaming. I have worked myself up so badly over this that I’ve almost cried in public with the effort to just pay attention. I start out listening, but everything goes somewhere…

Example:
“And I would recommend taking a closer look at Stephen King’s On Writing, since we’ll be drawing heavily from that in this workshop–”
(Oh, I’ve already read that. It wasn’t very good. I guess King has the right to say whatever he wants, since he’s famous. And he does work much harder than I do. I couldn’t write for six hours a day–or was it four hours? Anyway, when I was working on Forest Castles, I found it impossible to work for more than one hour a day. But that might just be the ADHD. I really need to write more characters with ADHD… but it’s so hard! I don’t think about my symptoms all the time…)
“…one brief writing exercise. Does that prompt work for everyone? Okay, go!”

And now I’m stuck as the only person who hasn’t heard, and I don’t dare risk telling the speaker I had the disrespect! to not listen to them. Even though this happens more when I try to make a focus on listening, because activating my brain to do something specific while listening… means it’s now activated for everything else, too. Mostly my hyperfixations (which we’re going to get to in a minute!)

But we return now to the DSM’s examples of inattentiveness.

  • Often fails to give close attention to details or makes careless mistakes in schoolwork, at work, or with other activities.

I’m known for getting a consistent 95% on tests in subjects I know well. Hand me a 5th grade spelling test and watch–it’s so easy, my brain goes into autopilot and oh my God I just spelled orchestra without the ‘h’. How did I do that? I know that. And I’m going to hand it in without noticing–even if I check it over. Imagine how little you care about a test–my brain cares even less. We’ve got all this energy to spend on HYPERFIXATION! Move faster so we can go do that instead!! It prioritizes things that are more emotionally important to me and costs me performance in other activities.

It’s nearly impossible for me to get a 100%. On math tests–a subject I loathe–somehow I always ended up with exceptionally low scores because I’d add 3+3 and get 8. I can’t explain it. My brain stops caring.

  • Often does not seem to listen when spoken to directly.

This just happened to me a moment ago. I was researching automatic cat feeders, and my mother came by to say something. She got all the way down to “…wi-fi, and there’s no cell service in some places, so you won’t be able to access–” before I managed to cut in and say I hadn’t heard anything she’d said.

Again, no disrespect. I’m just busy, brain-wise, with the cat feeders, and when I get into reading those reviews I’m going to need more than a second to register someone is talking to me.

  • Often has trouble organizing tasks and activities.

Tried to start a bullet journal. Spent so much time on the aesthetics that I lost overall time to do the actual tasks. Still mad about this.

(Also, I can never keep a daily journal of any kind. Even a planner. I think I’ll remember things on their own, but I won’t… and either way I get forgetful about writing things down.)

  • Often avoids, dislikes, or is reluctant to do tasks that require mental effort over a long period of time (such as schoolwork or homework).

I take issue with this description, but I understand why it’s there. Personally, for me, it’s not that I’m “reluctant”–I can’t get started sometimes. I want to make very clear that this is not an excuse. I went to therapy and I recall very clearly speaking to this therapist about how desperately I wanted to be able to just do these things. I had crying breakdowns multiple times at my desk at home because I couldn’t start. I couldn’t do it. Do the math, do the math, do the math– I sat there knowing exactly what I had to do, but it was like some kind of force was pushing be back–I could not start.

This therapist said to me, “Well, you know what you have to do, right?”

“…yeah?”

“Just do it!”

That was perhaps the worst advice I’ve ever gotten. Still very upset at that therapist for that… should not have to explain why “just do it” is not a helpful response to “I am unable to do it no matter how intensely I want to.”

What would end up happening, for the record, is I would do these things late–late and sloppy. And it would take hours, especially since… well, not much sleep to get in that scenario, right? And so the next day I’d be even less able to start, because my subconscious was reminding me how bad it felt to do it the last time, and how long it took. Put it off longer. Go somewhere else.

(What I’ve done since is set Pomodoro timers. I work for fifteen minutes, then take a break. The knowledge that it’s only fifteen minutes allows me to start, and when it’s writing, I often get lost in it to the point that I don’t even need the timer anymore.)

For the record, this is known as executive dysfunction.

  • Often loses things necessary for tasks and activities (e.g. school materials, pencils, books, tools, wallets, keys, paperwork, eyeglasses, mobile telephones).

The reason this is listed is likely that there’s a difference between losing a doll in your room and losing your glasses which you wear on your face every day. Guess which one I did repeatedly until I started putting them at my bedside and never taking them off once the day began. My glasses are now either on my nose or by my bed, thank God.

So, yes, this. I lose things constantly. It’s a poor memory issue, but also, again, that maladaptive daydreaming and hyperfixation… we’ll get there! But for now all you need to know is that I’m often thinking of something else when I put a thing down, to the point that I don’t even recall where I was or what I was doing at the time of the Thought.

Now, maladaptive daydreaming and hyperfixations aren’t mentioned on the diagnostic list, but they’re extremely common to the point of not really being symptoms so much as Things You Get When You Get ADHD. Maladaptive daydreaming is a condition in which you daydream to the point that it impairs your regular functions.

That sounds nice, of course, until your hypothetical argument with your friend takes over your concentration mid-lesson. In my case, I also can’t do anything productive on transportation–I get so into my own mind (usually with music and/or thinking about my writing and/or hyperfixations!) that I genuinely can’t break out until I get wherever I’m going. I don’t speak to anyone, I don’t work, I don’t read… It just doesn’t work.

Now, hyperfixations. Remember when you were really into that one fandom? And you had posters and watched videos of the actors all the time? Well, imagine you can only think about that. For several months, you are only able to think of that one thing that you like. If you stop thinking actively about buttering your toast, now you’re thinking about The Thing. For me, a big fandom actually worsens the situation–because I can feed my need for content about The Thing whenever I want, my brain gets used to that rush of getting it and seeks it out even more. I am very, very glad to not have any hyperfixations right now, specifically because it makes me totally unproductive. I actually don’t join new fandoms because I know this garbage will happen to me every time.

This is actually how I knew I had ADHD. Once I heard someone with ADHD describing this, I stopped and thought back. I can characterize almost every year of my life by my obsessions. Shleich dolls. Harry Potter. Black Butler. Star Wars. Legally Blonde. It’s exhausting… that’s not even a quarter of the list, either; just things that come to mind quickly. And when I’m done with a hyperfixation, I barely care about it–time to plaster over those posters with the ones for the new interest! But I’ll always have that love for it deep inside, and anyone who asks will get an earful.

  1. Hyperactivity and Impulsivity: Six or more symptoms of hyperactivity-impulsivity for children up to age 16, or five or more for adolescents 17 and older and adults; symptoms of hyperactivity-impulsivity have been present for at least 6 months to an extent that is disruptive and inappropriate for the person’s developmental level:

“Yves, I don’t know where you get your energy.” “Yves, it’s 3:00 AM…” “Yves–Yves–shhh.” “Yves, the kind of music you listen to might kill me.”

I’m very loud. I’m very easily excited. I jump up and down slightly when someone mentions a thing I like. I’m bouncing in my seat right now because I’ve been sitting a couple hours and I need! To! Move! This manifests as fast typing, fidgeting with clothes, biting nails, scratching my scalp, and chewing on my lips as well.

  • Often fidgets with or taps hands or feet, or squirms in seat.

See above. This is compounded by stress–if I’m in a situation I can’t leave, and I’m anxious, I chew my nails down to stubs. I scratch at my scalp until it bleeds. I used to have arguments with my mother about it–she insisted it was seasonal. I told her it was school, where I was often forced to sit through hours of immersion Hebrew classes (I didn’t know any Hebrew, and everybody else did.) My wandering, anxious hands would go immediately to my head–especially because teachers hate when you doodle… but nobody can tell you to stop scratching if you do it discreetly.

I eventually got antibiotics for the multiple wounds on my head, and a combination of the shame from people constantly asking why I had blood all over my head and the places where hair did not grow as well as my own awareness that this was not good led me to improve. I still do this, though. I compensate with scalpcare shampoo. I’ve had many a nightmare about opening wounds again.

(Yes, really, nobody suspected ADHD. Ever. It took my bringing it up because of hyperfixations, of all things, to get a diagnosis.)

  • Often runs about or climbs in situations where it is not appropriate (adolescents or adults may be limited to feeling restless).

THIS IS A VERY IMPORTANT POINT. People with ADHD are often stereotyped as being unable to sit in their seat–but what about when you’re available to leave? I loathe meetings and assemblies; I bring sketchbooks and pencils everywhere in case I’m forced to sit for an hour. My hands need to move. I need to move, but it’s not socially acceptable, so I don’t.

A lot of people with ADHD never break the rules. They suffer, but they don’t get up, because they know it’s wrong and they can’t.

  • Is often “on the go” acting as if “driven by a motor”.

Oh, that’s accurate. I feel like I can’t stop. Even with low sleep, I just feel irritable–that energy is always just under the surface. I’ve been switching between this tab and several others to be Productive in as many ways as I can be at once…

  • Often talks excessively.
    • Often has trouble waiting their turn.
    • Often interrupts or intrudes on others (e.g., butts into conversations or games)

Oops. I’ve been told I talk too much, and though I’m too polite to butt in on people, I get that impulse all the time. I feel all funny if I’m not dominating the conversation. I like having quiet friends because I can talk to them… I always have something to say.

I’d like to note that one of the reasons there are fewer symptoms necessary for adult diagnosis is that we hold back. We stop interrupting. We don’t get out of our seats. It’s not allowed, so we don’t do it. We effectively hide our situation from everyone–often even ourselves.

This also led to severe frustration for me, both as a child and now as an adult. Why can’t I just sit still?stop scratching–pay attention–do the work– it never helps. All the shame and self-hatred in the world won’t change it. I’ve worked hard to get by alongside some of these issues, but I’ve never truly removed them in their entirety. And that’s okay. The same thing that makes me scratch makes me able to write for an hour without stopping. The same thing that makes it hard for me to pay attention makes it easy for me to brainstorm work. It’s complicated. There’s a lot of unnecessary shame.

More about the diagnosis: I was seeing a psychiatrist, and she gave me a small test a while ago, which I filled out, not really thinking about it. It was for being autistic, and I didn’t pass–we both agreed on that. Clearly I was not autistic, and it was something else. Later, I asked for an ADHD test, and when she handed it to me I started laughing with relief. This was what was wrong. I wasn’t nuts, or lazy, or stupid. Here was everything about me on a little sheet.

This is that sheet, if you’d like a look. I want to stress that this is what the doctor will hand to you if you ask them about ADHD. That’s it. Self-diagnosis is easier than people think–the doctor just has you fill that out and then they tally it up. You can see for yourself how easy it would be to do alone. Would just like to share that to briefly combat the stigma of self-diagnosis.

Good luck with your character!

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Wow! Thank you so much for such a detailed response! I went ahead and bookmarked it along with a couple other replies here.

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And thanks to all of you who replied so far! I have a few more questions addressed to you all. How many of you take medication? How are your symptoms on medication vs off medication if you do take it?

Also, while doing some other research, I saw that some people with ADHD experience something called “rejection sensitive dysphoria” I believe it’s called but correct me if I’m wrong. Have any of you experienced this? If so, how does it affect your daily life?

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A little on my thoughts about meds

I take medication. I’m not going to go into further detail in that in terms of what I take and what dose. But I do see a psychiatrist every three months to discuss if it’s still working and if there’s something that needs to be changed. I do not like these appointments (but they are necessary and I do need them) because I often feel like I don’t know.

It’s like they ask you like how are you doing, are you better than before, but like I feel like I don’t know the right answer because I forget what it’s like to not take stuff after awhile and I don’t know what helps me, cause some of it is in my head, or like I just didn’t get enough sleep that night… it’s something I think about and wonder about and I try to answer my best and most accurate way, but it’s so complicated for me. Sometimes I wish that I didn’t even start with any meds and just deal with it alone. I can start scaling back, and get off of it to see if I even need it or if its even helping me, but I’m low key scared. And it never seems like the right time to “mess around” with the dosage and everything.

Annnyway.

I hope that answers the first two questions. You probably got more than you needed :sweat_smile:

And I haven’t actually seen that before, but I did google it and now I’m more informed about it. I do not experience that myself.

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Oh my God did I forget to write RSD?! I’m so sorry. That’s big enough that it’s affecting me right now…

Okay, let’s do this in order: I have never taken ADHD meds. I tried taking depression meds, but since depression wasn’t the issue, they didn’t… work… I’m sorry I can’t help here. In my day to day life, I function well enough that I wouldn’t want to try new medication in the hopes of ‘fixing’ my smaller issues. Nothing against meds! Just not sure I have the time/money to experiment, you know?

But RSD.

So, imagine you have this best friend. And you just told a joke that was a little on the line. But then she frowns, and you realize–oh my God you were totally insensitive. You just really hurt her. And she says she needs some space, and you realize you may have just ended this friendship. This is objectively your fault. You did something stupid, and now it’s all over. It feels awful, and that’s completely normal.

Now imagine that you are talking to a stranger on the Internet. They’ve made some nice art, and you’re very into it. You’d like to befriend them, but you don’t want to be rude or anything. You message them and say “hey your OC is really cool! are you writing a steampunk 'verse?” and they say “I’m writing science fiction. He’s locked in an interdimensional struggle with spacetime. A lot of people think it’s steampunk, though.” You send a really quick “oh gosh sorry well that’s really cool!”

They do not respond for a couple of hours.

You feel exactly the same as a reasonable person would in Scenario A.

I have a theory, myself–kids with ADHD know that they’re ‘wrong’. They have to conform. They have to not be themselves for everyone to like them. To Succeed, you understand. In school, in work, in life. So they stop squirming, or stay in their seat when they need to leave, and they become very, very finely attuned to sensing when someone–particularly authority figures–is bothered by their behavior.

I could be wrong. It might just go along with ADHD. But I know I experience this–last night I posted a link to something I thought was funny, but hadn’t really looked at, and my friend asked if I could trigger tag it because (though I hadn’t looked at the page too hard) there were mentions of suicide and self harm. I immediately did, and I felt like garbage because, even though he was okay and he was clearly not angry or upset with me, I started projecting–I did something stupid and it’s ruining our relationship. He’s going to reject me.

The most important thing about RSD is that it’s not always real rejection. It’s perceived rejection. I’ll change personalities, typing styles, topics of conversation to stay on good terms with someone. I’m sweating right now because a mod edited one of my posts to remove a link to my tumblr (I’m really, really sorry!!) Several months ago, a cop came to my door with something small (think a noise complaint), and once he left I stumbled into the bathroom so I could cry away from the friends that were over. It’s possible this is influenced by my father’s Bad Parenting Methods, and I’m sure it is on some level, but even when it’s just random authority figures (or people I care a lot about) I get anxious. I get irritable–can I fix this by rejecting them back? I hate that situation, but it follows me around.

I should note that I have Some Pretty Serious Issues, as evidenced by, you know, Father Stuff, so this is much stronger than it might be for others. But that feeling–from what I’ve heard–is always the same. I’ve fucked it up, and this relationship is over. I’ve stopped following up on late responses from some friends because I felt that every time they didn’t respond for a day–not their faults at all! But a feeling I was tired of having. Thinking about it now gives me that good old pain in the chest, to think that… well, that I fucked it up and the relationship is over.

So! There’s that. It’s not everyone–I would just be embarrassed if I were in, say, a Starbucks and I said the wrong thing to the barista–but for authority figures and People I Really Care About (friends, potential friends) I’m very panicky. Okay I have to stop thinking about this and go drink a lot of cold water so that I may sweat less and not have trouble sleeping for the third night in a row oh my GOD brain we get it I ruined everything may I please have one good night’s rest.

(Hope this helped!)

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Ooof that sounds like a very tricky scenario. I’m sorry you’re in that situation. I hope you figure it out and that everything goes well for you. But thank you for replying. Also, and this goes for everyone who replies as well, if the questions get too invasive (I’m not very good at judging what’s too invasive since I don’t have ADHD so I apologize in advance) or uncomfortable, please let me know. And you don’t have to answer if you don’t want to!

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Oh I feel you on that first part. I’ve been suspecting I’m on the autistic spectrum for a little while but haven’t had the money (or confidence for lack of a better word: I’m not totally sure I’m even on it and don’t want to go to therapy for fear of getting told I’m “just weird and socially awkward” you know?) to get a diagnosis.

But holy hell that sounds so exhausting! So if something goes wrong in a conversation with an authority figure/close friend, it sends you down this fearful rejection rabbit hole? Is it almost like a panic attack or is it different? (I’ve had those: they’re not fun)

I think you’re right about this actually :0 I’ve read a lot about and heard from friends that they often try to mask their symptoms so they can blend in with people who are neurotypical. I actually find myself doing it sometimes when I don’t understand a joke or sarcasm. I awkwardly laugh and pretend I get it so I don’t make them feel weird or sound dumb.

Thank you again for sharing your story. And oh goodness! I hope you get some proper rest!

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Well, I’m not always in those conversations! But yes. The lack of sleep recently thinking about Oh God I Shouldn’t Have Said That is really bothersome. And I was in the car with my mother the other day because she offered to give me a ride to Starbucks… I gave her the wrong address and she went “oh my God Yves that’s so far. I don’t have time for that. Can you find a closer one?” and my heart was thumping the rest of the way there because I felt like a rude jerk. It went away–over time. Mostly when I got my drink and sat down outside. But it’s obviously not a great feeling.

So it’s really just… a lot of unnecessary anxiety, yes. I try to compare it to a panic attack, but I’m not sure I’ve had one–I just know I get extremely anxious to the point of needing to Not Do Anything for a little while.

It’s no problem at all; delineating symptoms helps me think of how to write my own characters with ADHD better… and thank you! Got to go to bed in the next hour; reading before bed tends to help and I’m planning on giving myself time tonight.

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It is. thank you. And you’re welcome. Yeah, totally, not a problem. I’ll let you know if that ever happens.

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Also, I think ADHD is a lot like autism. You won’t meet two people with the same exact symptoms. I take medication for mine as well, but I’m not sure if you would want to go down that route or anything. It depends on the degree of ADHD you are using.

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I don’t have ADHD but my son does.

In short, I like to describe it as active body and active mind.

It seems that it appears in girls differently than what it usually looks like in boys. So I’ve seen lots of stories of girls not getting diagnosed because they were missing the “hyper” part. My son scored the maximum on all of the ADHD markers. He’s like the poster child for the stereotypical ADHD child.

My son was diagnosed when he was 5. I did not really notice it earlier because I was so used to the way he was, and every symptom he had you could easily attribute it to: Well, he’s a small child. That’s what children do.

But when he went to Kindergarten, the teacher immediately started complaining because she couldn’t handle him. Only when I saw him in a setting with a group of other children, I started to see that she had a point. Sure, all kids fidget, are impatient and can’t sit still for a period of time. The problem was in the intensity of how MUCH he did those things. And it was very noticeable when he was among other children.

We had him on Aderall for some period of time after he was officially diagnosed but eventually stopped it - there just wasn’t enough pros to risk the cons of the drug. Just so he’d be able to sit still through a boring class? I was supposed to drug my son to make the teacher’s work easier? Yeah, not happening.

I understand that other parents might keep their kids on Aderall and they do better with it. In my son’s case, I think it was the right choice. Yes, he struggled through school in the first few years of elementary. Not because of intellect - he’s very smart, but because he has a hard time remembering long instructions and focusing on one thing for a longer period of time and unfortunately the education system is not designed to child’s individual needs. But his teachers have been understanding and did not create any issues.

I started to understand why some people homeschool their children. I don’t have the patience for it but I have a lot of respect for parents that do.

He’s 11 now, he still has ADHD and bounces off the walls. Literally. I really mean literally bouncing off the walls. He displays some symptoms when he’s stuck in a boring place where he’s like a caged animal. He reminds me of autistic kids in those moments - with how he bobs his head, etc. He just can’t handle being still (though youtube helps). BUT he’s learned how to deal with school. He’s getting much better grades, loves science and has the ambition to be an engineer.

He just has more physical and MENTAL energy than most people do. He likes to do multiple things at the same time and never gets lazy or slouchy (though he’s finally starting to understand that getting a nice long sleep is cool - he was very much against sleep when younger).

In the end, he’s just a boy. He loves the same things all other boys like.

If I may speak on his behalf, he doesn’t want special treatment but he does want people to understand that he’s not being difficult and that being a little different is not a bad thing.

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really interesting thread- I relate to a lot that’s been mentioned. I really respect that you’re doing research in this to represent ADHD fairly, but don’t worry about maxing out all the diagnostic boxes, there’s always some inter-individual variability!

things like restlessness, the fidgeting, the hyper fixation, RSD, daydreaming and auditory processing issues, the extreme procrastination (for example I have a short essay I was meant to write for a couple weeks now… since October if I’m getting technical. it shouldn’t be so hard to start. just sit down and get started, right? its not that bad? my brain disagrees)… these tend to be the more common traits. I have a lot going on upstairs so it’s hard for me to go to sleep, and have a good quality’s sleep too, or to ‘calm my mind’ and ‘organise my priorities’. I tend to get lost in escapist fantasies and what-if situations and internal monologues but outward people think I’m a shy kid, who’s maybe depressed.

I also have sensitivity to certain sounds - like I REALLY hate the sound of people eating! People think it’s rude and it makes me feel bad but I’m not exaggerating when I say it provokes a strong fight or flight response from me. My heart beats faster and I get sweaty and I feel like punching something, but instead I leave the room asap or plug my ears. I NEED to carry my headphones around with me 24/7, it’s my absolute essential, and I’m sure lots of people can attest to that habit!

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