Is ADHD a real disorder?

Yepyepyepyepyepyepyepyep

kind of furious about this abysmal BBC article / "investigation"

https://www.bbc.com/news/health-65534448

To quote trans friends when there's a similar 'expose': Christ, I wish

Wow, not sure what's going on there but yes it is pretty absurd to be like "wow how dare people seek and receive healthcare?"

We have been in a bunch of places about medication with my son (just turned 12). Some were just absolutely wrong for him but I think we're in a decent place now.

After a decade of being functionally nonverbal, he is entering a really social phase where he's spontaneously introducing himself to strangers on the street and in stores.

Part of me wants to celebrate, and another part of me is kinda like, "Hey dude, maybe tone it down a bit? Maybe that woman just wants to buy some lettuce."

Yesterday we were on a walk and he wanted to pet some dogs (which is very unusual for him). So he petted a dog and told the owner, "My name is Sam I Am." The owner said, "Hi Sam, my name is Virginia." He shrieked with glee and pointed at the ground, because Virginia is also the name of the place we are. Sam was thrilled at having made the connection.

Then he approached another dog, whose owner said the dog was shy. Sam said, "Same! I am shy of dog and water." Um, okay.

I love my son but sometimes it's hard to explain to people that he cannot and will not behave like most people. And he probably never will. There is no finish line with him. We will never be "done." He will need supervision basically forever. He's not going to college, getting a job, moving out, living independently, getting married.

Sorry for the long-ass post but this is a thing and it is real

That BBC "expose" was infuriating.

Diagnosed last year and currently taking Vyvanse. It's changed my life but I'm still so angry that it took so long to get diagnosed and feel like had I been diagnosed sooner my life could have been so much different. Instantly it explained so fucking much.

I also love OneNote. I've been trying notion because someone said it was better but I might go back to OneNote.

Hi.

At work this week, we were asked to fill out a voluntary survey about whether we identified as having any disabilities. I clicked the No button and was about to press send, and I had to stop and tell myself, NO, you absolutely have a fucking disability and you're better off owning it than brushing it off.

So the girl who runs the diversity group and I are friendly and I DMd her to ask if it counted. She said abso fuckin lutely it did.

Shortly after being diagnosed I googled tips for people with adhd at work and it said something like - number one tip - get an assistant. I am an assistant to SEVEN institute chairs and the chief medical officer at [Big Hospital] here. I’ve known this for years but I’m doing exactly the kind of thing I shouldn’t and functioning well at it has been 10x as hard for me as it would be for someone without ADHD.

An excellent piece on how conversations around mindfulness and mental health veer toward the trivial:

https://www.theguardian.com/commentisfree/2023/jun/19/nobody-ive-ever-been-locked-up-with-in-a-psychiatric-hospital-felt-proud-of-their-illnesses?

An excellent piece on how conversations around mindfulness and mental health veer toward the trivial:

https://www.theguardian.com/commentisfree/2023/jun/19/nobody-ive-ever-been-locked-up-with-in-a-psychiatric-hospital-felt-proud-of-their-illnesses?

― xyzzzz__

"In The Forest Of The Night", God, I hated that Doctor Who episode so much. My mental illness does not give me magical powers to see things other people's can't. Well, it does, but those things _aren't real_. I know they aren't real. My trauma-induced delusions are not going to save the world. I don't _want_ to save the world. It's not mine to save.

Having said that, while I agree with de Jong that mental illness isn't something to be "proud" of, I feel like ultimately it's a bit of a misdirection. No, I'm not proud of the trauma I'm going through, not proud of my tendency to hurt people around me. I'm not proud that last night I went nonverbal and spent the night screaming, crying, and cursing. Not _at_ anybody. There was nothing particular that was upsetting me. I just _hurt_.

And yeah, talking about things in terms of "mental health days" sells that side of it short. There's a certain amount of what we might call "respectability rhetoric". You know, I founded a community a couple of years ago and I'm banned from that community and a couple of the mods in that community don't think that's right, that I'm being punished for my mental illness, but I just, you know, accept it. It's outside of my circle of control. They have the right to make that decision.

A couple of... (indeterminate amount of time) ago, I was feeling badly, and I was worried about my mental health, I was starting to feel like a Bad Person, and so I posted my worries to the thread for people to reassure you that you're not a bad person.

Nobody responded to my post.

I don't take it personally. It's a small message board. My experience is outside the realm of what most people are equipped to deal with. Nobody should _have_ to deal with what I deal with, and if someone chooses not to... I think that's a valid choice.

But I see de Jong complaining about "mindfulness, mental-health days, and self-care", and these are all essential parts of my mental health regimen. If those things aren't part of hers, fine. If those things aren't valuable to her, personally, fine. We all have different problems, different traumas, and we deal with them in different ways.

So here is what those things mean to me.

---

When I was young, I wasn't one of those kids that had perfect attendance. I missed school, not so often that I would get expelled or anything, but often enough that it was noticed. Some days I wasn't up to getting bullied. Some days I was too low over the abuse I'd gotten from my mom the previous day. Some days I just wanted to be able to wear a fucking dress.

Usually I characterized this as a tummy-ache. If I said it was a fever, my mom would want to take my temperature, and it was always normal. This week, my girlfriend is trying to get me set up with an "integrative health physician". She says they're better at treating illnesses are... and there she stumbled. Because they haven't come up with a new word for it, you see. The old word is "psychogenic", which literally means "made up", not real.

Just one more way I grew up in a system that encouraged me to lie about my illness, and then condemned me for lying.

When I got older, I learned to suggest that I was having diarrhea. Again, "diarrhea" isn't a word one says in polite company, even when you're calling into work on account of having it. I would say I had "digestive issues".

I still have a hard time of it. A hard time calling in on account of "depression" or "anxiety". I feel like calling in should be reserved for _real_ problems, even though I know, intellectually, that depression and anxiety absolutely _are_ real problems. I can do it, though, sometimes. That's what mental health days mean to me.

---

I started meditating at work a few years ago. Maybe 2018, or so. Pre-COVID. My office still has an online meditation break every day.

It was hard for me at first. Hard for me to settle my mind. I have what's known as "hypervigilance". Constantly worrying, constantly in near-panic, until I get overwhelmed and I just stop everything and curl up into a ball. Things that are easy for others are not always easy for me.

I've read some of the popular books. Daniel Kahneman and so forth. When I get emotionally overwhelmed, I literally can't think rationally. This is a quality I share with, as best I can tell, the entire rest of the human race.

When my brain starts screaming at me, when my brain feels like it's on fire... well, sometimes, I guess I spend hours on end screaming and crying and cursing. And terrify the people around me. I do think it's important, it's important for me to be able to do that sometimes.

Sometimes, though, sometimes I'm in a work meeting. Sometimes I'm at the grocery checkout. Sometimes I'm having coffee with a friend. And when that happens, the skills I've learned from practicing mindfulness are often very useful to me. By practicing those skills, I have a better ability to handle the stresses that pop up for me on a regular basis. I'm more likely to be able to finish my shopping trip and get home with groceries, to finish socializing with a friend instead of leaving suddenly and risking them thinking I don't like them.

These may be small things, but for me, they're not insignificant.

---

OK, look, I get what de Jong is saying. Really, I do. You say "self-care" and someone who doesn't have severe mental illness will think of treating themselves to an ice cream sundae or something, whereas for me it's one of my friends reminding me that i should eat today, and when was the last time I showered? Yes, it's frustrating, and yes, there's a paradox, because people like us, We Are Not Like Them. I'm not proud of my mental illness. I'm really not.

But I'm not ashamed, either. I'm _responsible_ for myself, for the consequences of what I do and say, for whether I eat or don't eat. Always. I'm not a Bad Person, though. A lot of people, I guess, aren't confident enough that they can say that about me, to my face. They worry about the ways in which I am Not Like Them, I think, just like I worry about the people who are Not Like Me, just like I sometimes ask myself "Are the Straights OK?" They are, in fact, OK. It's just easy to doubt it, sometimes.

Well, in a lot of ways, I am like them, I am like people who don't scream and cry in the night, we both practice mindfulness and do self-care and take mental health days. De Jong says she wants to be normal, and I'm not sure if I do or not. I'm not. But I figure one way to be normal is to do the things normal people do, even if I'm not doing them in the same way or for the same reasons.

Basically I think mental health needs to ALSO be trivial. Not just severe and life-threatening, but a casual, everyday practice. That's what I think.

Booming post, Kate. That’s something I always try to normalize when the subject comes up at work, where mental health is not exactly the #1 thing people are thinking about — the idea that everyone should have a therapist they see as often or as little as they need — that you should think of it like maintenance, like go see your therapist, get an oil change — and if you do that a couple times a year maybe you won’t break down on the side of the highway and need the tow truck & get a big repair bill.

Of course, I’m a fuckin basket case & need more than your twice a year tuneup, but that’s what it is.

Apologies if this has been raised in the thread but was wondering if anyone has experience with kids and meds - specifically an 11-yo with hyperactive/inattentive tendencies. We are all learning how to do things better re behaviour change and self-knowledge, but we (parents only) are currently consulting a psych who is pretty gung-ho for medication - essentially saying that it is not possible to surmount the challenges of ADHD without it. I have some reluctance, but recognise that it is probably unfounded - would be grateful for any insight.

vdgg,

http://www.youtube.com/playlist?list=PLzBixSjmbc8eFl6UX5_wWGP8i0mAs-cvY

I don't know how to post videos here, so that probably won't work. But hopefully you can copy and paste it into your browser. I've got two kids and a wife with ADHD and sometimes they drive me up the fucking wall. That series of videos went a long ways in helping me to understand how their brains are different than mine and how to be patient with them, especially my kids. I should say that their cases are all relatively mild and my kids do very well in school without medication. My wife is trying different meds out and I haven't noticed anything helping with ADHD, but she is definitely less anxious and happier.

My younger daughter needs extra help in school with math because she has a very hard time holding multiple steps in her head. If there's a multi step problem she wants to be done after the first step. She was emotionally volatile when she was younger: huge tantrums and standard disciplinary things (time out) Did Not Work for her. We took some parenting classes and eventually we all figured out how to handle each other. Later we had her tested for a range of things and she was positive for ADHD and a lot of things started making sense. I was initially skeptical of meds until I watched the series of videos linked above.

My feelings went from thinking that if she persevered through this that it would make her stronger, that we rely on medicating our children too much, to realizing that it's a medical condition and that if my kid had physical disease that needed medication I wouldn't hesitate.

It didn't work for us. She responded poorly to several different types of meds. Both classes of stimulant medication made her act like an angry coke-head and the non-stimulant just made her kinda grumpy with no benefits. So we pay for extra help in school and I spend a lot of time with her on extra work outside of school and she's doing well. I should also say that she is not on the hyperactive side, for her it's an attention/focus thing.

I'm not going to be pushy with how other people handle their kids because it's hard and personal, but I encourage you to watch all of those videos. If your kid is struggling and medication helps, they won't resent you for it later. I have a friend who was diagnosed as a kid but her parents were anti-med. She didn't get medicated until she was in her 40's and it was a real "holy shit" experience. Her life got a lot easier and she was sad that it took her so long to get over her fears of medication.

Cow_Art thank you so much for that post, it's entirely the kind of perspective I needed. I will watch those videos for sure, the link worked fine.

The reluctance to turn to meds is for all the reasons you state - I think I probably was pretty ADHD as a kid and didn't really learn to master my thought processes until my late 20s. I'm kind of proud of working myself out and feel stronger for it - but being less prone to cognitive shitstorms would've put a very different (more positive) cast on my school years and 20s.

It is great you are able to spend the extra time to give your daughter support - I have recently been very consciously prioritising my son's needs over work (sounds obvious but I've had a really difficult couple of years on the work front). It makes a great difference and if I had the resources I would happily quit work to focus on his needs.

FWIW I’m fucking PISSED I didn’t figure this out sooner and get meds. It was like living in a dark room and someone turning on the light for you. I’m not one to tell anyone what to do, but finding the right meds and the right dosage is a journey worth taking IMO. My life is night & day - and my Conor of depression, which I long thought was the primary symptom, has all but disappeared.

Other things to keep in mind: meds are much better and more nuanced than when we were growing up. Also, it can take time to find the kind that works for your kid. It was really frustrating for us because her reaction was so bad and it took us a minute to realize that it was the meds that were making her shitty.

But, we’re outside of the norm statistically. The most common meds work for something like 75% of adhd people. The fact that nothing works for my kid sometimes makes me wonder if she’s misdiagnosed. It’s harder to get an accurate diagnosis wheb they are young (5).

we are finally going ahead with meds for our 14 yo. his adhd is what i'd call relatively mild, but his odd (oppositional defiant disorder) is through the roof. it'll be interesting. he's skeptical of it all, which i think comes a lot from the lovely Emma B who is also skeptical. we have been very ignorant of how these things work though. we had imagined meds as being akin to antidepressants - i guess because antidepressants are so common, it's what has lodged in the popular imagination. but they don't work like that at all from what i understand. you don't need weeks to "build them up" in your body. a friend describes it as like putting on a pair of glasses. she didn't start meds until she was in her late 40s. she says that the biggest thing they've done for her is give her just a little bit of space between having the idea to do something, and actually doing it. and in that space she is free to use her judgment. she feels she has much more control over herself. i am really hoping that my 14 yo has a similar experience.

*takes ADHD meds*
30m later: So here's a chart of the number of russian buisnessmen defenestrated by month, and here's another with the number of deaths by defenestration. These are interesting, and as you can observe here, defenestration lethality varies significantly.

— Ada (@adacable) June 21, 2023

this is what I do without meds, I spent two hours yesterday making a graph of the number of British prime ministers living at all points in history, then I deleted it out of pure shame at having wasted that amount of time.

Starting ADHD meds has completely changed my life.

I wish to God I'd been diagnosed and put on meds as a kid. Things would have been so much easier/better. In fact, I'm pretty fucking angry I struggled for as long as I did. I don't even know if I can articulate it any better but for the first time in my life things I've always struggled massively with are so much easier now. It's wild.

speaking for no one but myself the experience with being on these meds has not been great for me in the long run although this is the context of long term unemployment rather than school (where I imagine it might have helped) - I've had diminishing returns and the side effects are increasingly unpleasant requiring benzos/anticonvulsants (prescribed) plus alcohol/weed/antihistamines/whatever else to balance them out - maybe I'm just an addict so I'm not saying this state of affairs is normal or inevitable but it crept up on me after a fairly positive start

this is not necessarily a welcome perspective esp on a thread that started off so horrifically but I'm wary of attributing too much solidity or causality to these diagnoses (which will be changed or be collapsed into each other soon enough) - the symptoms are real and it helps massively to have something to point to when interacting with institutions but way too many professionals have such a reductive understanding of these conditions and the associated treatments and don't seem to get that reactions to meds can be more complex than they work or they don't

I am sure that is true but, just as a counterpoint, I've now been on two different meds and have not had a single negative side effect from either. I only switched cause the first wasn't working well enough but I've only experienced positive things. Everyone reacts differently to meds but I think a lot of people are scared of them so I want to share what has only been a positive experience thus far for me.

I'm excelling at work in a way I've always known I was capable of but never managed to achieve and it's completely changed my outlook on what I can and want to do.

I'm absolutely not saying you or anyone else's positive experiences aren't real and great! just that experiences like mine also exist but are hopefully in the minority

Oh, I know! I'm sorry that it hasn't been that great for you. :/

there are complicating factors for sure and I def need some more holistic (rolleyes) treatment

this stuff is so hard to talk about I wish we had a better vocabulary for it than what psychiatry gives us

I'm only just noticing how adhd my posts are but oh my god

I'm glad they are helping so many people, I might have done better at school or work in the past if I'd had access to them (or not but who knows)

This thread is an amazing resource, and if people feel comfortable to respond I'd like to know what kind of medication has helped you (or your kids) specifically? I had a very frustrating experience with Ritalin IR because at the time it was the only ADHD drug available where I lived. Haven't tried any other medication but I feel like I really need something.

I started with biphentin which a) was fun, but b) caused major digestive issues for me and caused a massive crash in the afternoons (irritable and snappy). Switched to Vyvanse which was way easier on my system & had a gentler comedown. Stayed at a really low dose for a long time which I thought was fine but wasn’t up for the task really - am now on 40mg AM and a 20mg afternoon booster which seems about perfect.

The biphentin might have worked better had my doc understood about ramping up — he started me at the “average” dose whatever that was instead of starting at a low dose and working up. I think the shock to my system was responsible for 75% of the negative effect. Anyhow, Vyvanse is great for me. Lucky I found my “forever drug” after just two tries.

Yeah I am also on vyvanse. 60mg in the am. I did write my doc about it wearing off around 4 and wondering about a spilt dose like you’re doing.

I haven’t had any negative side effects from Vyvanse though it does kill my appetite. So effectively that it’s used as a treatment for binge eating disorder! I get hungry at night so it’s ok. I do have to remind myself to eat now though.

I tried Ritalin first and it was fine but I didn’t think it was quite effective enough. Had no bad side effects on that either.

I can’t remember what my kid tried, but if I remember right there are two main stimulant based types of medication. There are a lot of different variations: time delays, chewable, length of effectiveness, etc. If one type of stimulant doesn’t work, they try the other kind. If that doesn’t work they’ll try a nonstimulant. Stimulant meds work very well for most people with ADHD, the nonstimulants chance of helping is smaller.

additudemag.com has a lot of good info.

Yes. Both of the drugs I’ve been on are the stimulant type.

i am slightly worried about the effects of stimulants on my 14 yo’s sleep. one of his saving graces is that he sleeps like an absolute champ.

My son, who is 12, gets Focalin (dexmethyphenidate) and Intuniv (guanfacine). Apparently this is a common pairing. Focalin for hyperactivity and Intuniv to help with impulsiveness.

At the time these were prescribed, he was doing things like waking up in the middle of the night and pouring all the laundry detergent onto the floor.

Nowadays things are better but his behavior can still be a rollercoaster - at times, I feel like things are mostly under control and he's sweet and good-natured and cheerful. Other times we just have to understand that he'll be having a hard time with basically everything, and there will be a DEFCON-2-level meltdown over something like wearing socks. Or not wearing socks.

If from time to time we forget a day or miss a dose when something runs out, I do not notice a difference.

I think his biggest issue right now is anxiety, as opposed to ADHD or whatever. Because he is nonverbal, we don't always know exactly what is going on with him. But we do know when he craves reassurance, because he will ask numbingly repetitive questions, to which he already knows the answer.

What is big(gest) water in world?

What is big(gest) bee in world?

Who will pick up Sam after school?

Why is Dad old?

Lather, rinse, repeat, hundreds of times a day. This was cute 10 years ago. Sometimes it's exhausting, but it's the journey we're on.

Was on vyvanse for the longest time until we switched insurance packages and the price went up from $35 to like $185.

So now I take adderall -- Which Is Definitely Not The Same Thing -- until vyv goes generic this summer.

Yeah while everything else involved with mental health care in the UK is an absolute shitshow, all drugs that are covered under the NHS are £9. I actually haven’t had to pay for my meds yet since I’m still going through titration. The cheap meds are a definite positive.

I'm excelling at work in a way I've always known I was capable of but never managed to achieve and it's completely changed my outlook on what I can and want to do.

― Benson and the Jets (ENBB), Wednesday, 21 June 2023 13:29 (yesterday) link

Hey, this is really great to hear, and I very much relate to it! My career completely turned around when I finally found the right med (first couple weren't right for me). I also relate to what you said about realizing all the needless childhood frustration, although for some reason I don't wish I took meds as a child, maybe just because it felt like a decision I really needed to affirmatively make for myself, understanding why I was making it and knowing what the drawbacks were.

One tip for you: even with the meds, you will still likely experience periods that are relatively more of a struggle. I find the meds kind of serve as a safety net or a springboard, where I don't really fall all the way into the depths even in the bad times. I also encourage you to use other tools to supplement the medication like making sure you get enough sleep, regular exercise (supposedly the research says 30 mins or more with your HR above 130bpm), and I also find limiting drinking and not smoking weed helps a lot.

But it's so nice to suddenly realize "oh, it's possible to just sit down at my computer and do something, it's possible to just go get the dishes done without procrastinating it, it's possible to just DO stuff without all kinds of barriers, I wasn't lazy all that time after all" etc.

I think his biggest issue right now is anxiety, as opposed to ADHD or whatever.

― pomplamoose and circumstance (Ye Mad Puffin)

i'm gonna be honest i have trouble telling apart the anxiety and the adhd and the autism (i've seen people this year start self-IDing as "AuDHD", autism/adhd). i get overstimulated and can't focus and everything seems like too much and that causes me anxiety, but a lot of other things cause me anxiety too, basically i feel like i'm in a constant state of high-level existential terror/hypervigilance, and it's like a chicken/egg thing, you know? my inability to get things done feels less like "distraction" and more like "all-consuming, paralyzing fear". this week.

the meds are good... i think? sometimes? i've had, they've helped me. in the past. and the fact that i'm not doing good now i don't know if i can blame the meds because there's always, you know, _confounding variables_. and i don't expect the meds to solve all my problems but a lot of the other things people advise sort of assume that i'm able to get out of bed in the morning and that's kind of a stretch.

if i'd had adderall as a child, would that have helped? maybe. it's a little ways down the list, past "parents that weren't abusive", "a culture that understood what autism actually is and was able to treat autistic people with empathy and understanding", "trans rights", etc. confounding variables.

anyway your son has a lot more of all those things than i did, i'm guessing.

Lol I read this thread, went to Instagram, and immediately got served this ad:

https://takestasis.com/pages/stasis?ad_id=23854232224820214&campaign_id=23854232039420214&fbclid=PAAaZobI2q48WjOxG5awoZNaOLNX18UXn3XImCX1_cGYCvjQH8ObG5Xe3y19U_aem_th_AUJAy6TaQFFrN3n7IER3_lRU2lL5wfaTAqvAaTYGQ6ghhTGdx1FdlCnlzRdSh8UlK4FT5c--lUrLtRvNS7Hl1_tP&utm_campaign=Instagram_Reels&utm_content=23854232039420214&utm_medium=paidsocial&utm_source=ig&utm_term=23854232145440214

well there's one marketing person who's gen-x

you know i never thought of it this way but i do have a number of friends whose eggs cracked as a result of taking drugs

truth in advertising i guess

Oh, and I forgot, I’m also on 300mg/day bupropion, which has been my main mood stabilizer for 15+ years. The combo of bup and Vyvanse works well for me.

Bumping up to 70mg on the vyvanse

not smoking weed helps a lot . . .

Erm

Really? I feel like smoking helps me!

Whatever works for you. I feel foggy for a few days every time I do it now, edible, smoke, whatever.

I've known people who become much sharper and more focused when they're high. That's definitely not me. I have trouble reading when I'm high. That's probably why I don't do it.

weed increases my muffled internal monologue (one thread!) to a hundred-mile-an-hour crisply tuned maximum volume broadcast, which completely incapacitates me. so probably shouldn't smoke it.

sometimes I like to be incapacitated if I want to watch a film or listen to music without my sober monkey brain ruining it with thoughts. I find hash better than weed and cooking/eating better than smoking when it comes to anxiety the full body high really helps. as long as there's not much movement required that night or most of the next morning

obv if it's not fun don't do it

the weed is too strong now, none of that dodgy soapbar hash we smoked in the 90s, just one toke and I'm done for.

just do it more and it will even out as your tolerance grows at the expense or your memory and productivity

without it I just drink which has similar incapacitating effects but is way less fun and waking up feeling like nicely toasted bagel is far preferable to waking up feeling like a gross thirsty lizard zombie