ADHD Isn’t Trivial
One thing I’ve learned while trying to understand what it is my brain does – how it works and why some tasks that appear simple are difficult for me while other tasks that may be more complex are easy. Or why I simply have an inconsistent ability to be reliable or productive.
Most of the information is from articles I’ve read and lectures I’ve watched. Much of it is from memory, so I’m trying to cite this as more my personal experiences as filtered through information I’ve researched. My first post about ADHD has links to some videos which may help explain some of this, but this post is presented as mostly anecdotal.
I’ve read articles that suggest that ADHD exists because of a failure to adapt to modern schooling. I have read arguments that ADHD is simply pathologizing childhood behavior (especially boys’ childhood behavior). The name itself is both trivializing and wrong: Attention Deficit Hyperactivity Disorder, and most people don’t even realize there are three subtypes or how they work or what they mean. Or that there appears to be a fourth type that may not even be ADHD at all, even though it shares multiple symptoms with the other forms of ADHD.
But the name, the name is so very, very wrong. Attention deficit? As I said in my last post, I don’t have an attention deficit. I feel like I have an attention surplus. I have more attention than I need, and in fact am constantly looking for stimulation because the alternative is boredom, and boredom for me is almost physically painful. But really, that’s the tip of the iceberg. Most of the time, I am constantly switching my attention from one thing to another – online, it’s from chat to e-mail to QT posts to livejournal to tumblr to twitter to blogs to other sites and constantly swapping around and around doing whatever grabs my attention at that moment. Sometimes I can focus on one thing to the exclusion of all else for hours at a time, but I have difficulty not doing that thing even if I need to. In both cases I don’t have complete control over how I direct my attention. I may be unable to focus on something – on many things – that I need to do in favor of doing things I enjoy doing (like online socializing). It may be more accurate to say that I have difficulty directing my intentions.
But my inability to direct my intentions means that I often fail to do things I need to do, or want to do but for whatever reason I never seem to remember to get around to doing them. Sometimes I attempt to do things, but for whatever reason I can’t focus on it. It’s very difficult to write more than a couple sentences of a blog post before I’m distracted. And those sentences are themselves incredibly difficult to write because I feel like I really want to do something else (sometimes anything else). This makes it hard for me to meet deadlines because I wait until the last minute to do things. It makes it hard for me to keep up with bureaucracy and paperwork. In general, this can wreak havoc with my life because I am not always able to follow through on obligations and responsibilities, no matter how much I want to. This inability also means that I am easily distractable if I am not focused on a single thing. I have been distracted repeatedly from writing this post and keep losing my place, having to refind it, remember what it is I wanted to say here, get a few sentences out and then back to twitter!
As an adult, I am not running around and bouncing off the walls and even as a child I am told I wasn’t necessarily hyperactive. I did do risky, impulsive things (like climb on the roof, jump off of high places, play with fire, set off firecrackers indoors, etc) and some would say this is normal for children and I’m not really going to argue that point. As an adult, impulsiveness can mean not being able to properly filter what I say to other people, keep myself from interrupting. It can also mean buying something expensive I cannot afford because I’d really like to have it and the part of my brain that regulates this seems to work better with instant or short-term rather than rather than long-term delayed gratification.
So really, this impulsiveness can interfere with social relationships (imagine blurting horrible faux pas before I realize what I’m saying and can stop myself – yes, I’ve lost friends this way) and with my ability to manage money (must buy now!). This goes a lot deeper, though. And this is actually statistically supported – not that all ADHDers are like this, but that ADHDers are more likely than the general population to engage in high risk behaviors, start smoking, engage in substance abuse, and even end up in prison. ADHDers are more likely to drop out of high school, drop out of college, hold jobs for short periods of time, and so on. There are so many possible negative outcomes with untreated ADHD that it’s difficult for me to really give a full list. But the impact on multiple areas of life can be profound. Which is why I’m a high school dropout with a GED, I have dropped out of college three times despite being able to maintain excellent grades. Why I’ve been unemployed outside freelance work for 12 years. Why I’ve lost jobs because I constantly forgot little things (like buying shoes to fit the dress code) or because I was unable to consistently arrive on time.
Which brings me to another element of ADHD. I’m not really sure what the mechanisms behind this are, but I have a terrible time sense. Hours can pass in what feels like a flash, days can pass in what feels like a flash. The day I wrote about community feels just as distant to me as the day I wrote about dysphoria. I can’t even remember how many days ago I did either, although I can easily find out by checking the posts. I know that last Friday was seven days ago because I know today is Friday, but I can’t really explain what seven days passing feels like, because they sort of all become an undifferentiated blur. This has a practical impact on my life: I cannot accurately judge how long it will take to do something. If I think I can get it done in an hour, I am probably wrong and it may actually take 2-3 hours. This means, for example, that I often misjudge no matter how much of a margin of error I try to set, and I end up being late to work, or class, or other appointments. I have actually developed ways to cope with this, but it often means taking more time to prepare and arrive early than it would for most other people. It also means I have difficulty accounting for the future effectively until the future event and any consequences stemming from it are much more immediate – causing me to wait until the last minute to complete the things I need to complete.
I feel like I’m filling this up with a lot of information, but my point is that ADHD can represent impairment in multiple areas of life. It is not simply a matter of “hyperactivity” or “short attention span” and I am not even sure that the popular conception of what an attention span is even comes close to what attention and focus are like for people with ADHD. It affects far more areas of the brain and causes far more problems than I think is readily apparent to most. ADHD symptoms cause neurotypicals to view us as irresponsible, flighty, inattentive, self-centered, uncaring, messy – to view these symptoms as moral failings even as ADHD itself is viewed as a trivial diagnosis largely intended for children.
And the impact of this on my own life, living with a lifelong invisible disability that even I was unaware of, has been pretty immense. Not just from the abuse I endured for not being able to do what was expected of me, but the lost jobs, the failures to graduate college, the inability to apply what I knew, no matter how well I knew what to do. Two very common comorbidities with ADHD are anxiety and depression, and I have both. I may have more for all I know, but those two are certain. I have accomplished many things I set out to do with my life, but I have not been able to accomplish nearly everything I have ever wanted or hoped to do. And being treated like I didn’t care, like I was flighty and irresponsible, when this was so far from the truth: I tried to be reliable and responsible, I do care and I hope that shows in my writing, but I am not always able to initiate or sustain activity based on these things.
And I don’t mean this as a call for pity or regret, because I’ve never wanted that. Not for being trans, not for being ADHD, not for anything. I mean this because just in the past two months, what I’ve read was so full of misinformation, propaganda, outright lies that I feel the need to say something, to talk about what this is like for me at least. I’m not even sure I’m done. I feel like this post is rather clinical and may not communicate what it’s like for me to live with this. No matter how exhaustive I try to be, I always miss something. But I hope it helps people better understand what this is like, and how it’s not a matter of willpower but neurology. That the brain itself is wired differently, in ways that impact executive functions, that makes it difficult to prioritize tasks, control attention, sustain working memory through interruptions, resist impulsive behavior, and regulate emotions. That ultimately, this actually negatively impacts my own ability to make plans and account for long-term goals on a consistent basis. That I am more likely to be able to follow through on something with immediate consequences (and often gratification) than I am to follow through on something with delayed consequences, even if the latter are more important, more valuable, more critical, more necessary.
I would like to talk about medication, how it’s amazingly effective for some ADHDers, and that a lot of the information in the media is intended to scare and not inform, how it helps with actually focusing your attention (like I have been on QT for the past two weeks) and overall productivity. Unfortunately, I do not have any actual medication, and have been self-medicating with coffee to maintain my current posting schedule, although it hasn’t helped signficantly with a lot of activities outside of this. The difference for me between not having that coffee and having it is the difference between wanting to write a 2000 word post but spending all my time on anything and everything else and actually writing this post.
maybe this is why i never get anything done. ever. (or get a lot done in about a day. sometimes. none of which matters. and then feel depressed when i can’t direct it to be awesome.)
Emily S.
10 Sep 10 at 7:01 pm
Yeah, I have many days like that. I can get a lot done in a day, but none of it is relevant to anything I need to do.
Lisa Harney
10 Sep 10 at 7:02 pm
I had never read that Hyperbole and a Half post you linked to when you mentioned boredom being physically painful, but jfc that is so accurate. I forgot to take my meds the last two times I had chemistry class and I literally almost cried I was so distressed.
The misinformation out there makes me want to strangle people. I’ve had people (~experts at psychology~) tell me that ADHD just means your brain is developmentally behind in the attention area. Oh. Ok. :/
Thanks for sharing this, it’s just awesome.
chels
10 Sep 10 at 7:21 pm
I forgot to mention so much stuff too. Soooo much. It’s amazing how much actual science is out there that explains ADHD, and yet it never gets mentioned when the media wants to introduce the ADHD ~controversy~ as if there’s any that isn’t simply manufactured.
And oh yeah, sometimes I get stuck and can’t focus on anything and I am soooo bored and it’s like “ohhhh god whyyyy” and I can’t sleep because my thoughts are racing like pinballs.
Lisa Harney
10 Sep 10 at 7:30 pm
Oh and like I forgot to mention that if I drink enough caffeine my brain actually slows/quiets down enough that actual fatigue will break through and I can sleep. Based on this alone I should have had myself checked out years ago.
Lisa Harney
10 Sep 10 at 7:35 pm
I can relate to a lot of this.
Oddly enough, my sense of time is extremely accurate. I can usually guess the time with an accuracy within 30 minutes, even if I’ve not looked at a clock all day. I’m often within 10 minutes.
Yet, I’m still terrible getting places on time. It takes me forever to prepare to leave… there are so many steps and I can get distracted between or during any one of them. And I often underestimate how long something will take me… for some reason experience doesn’t seem to help in this area.
These days whenever I need to go somewhere on public transit, I usually try to catch a bus early enough that if I miss it, there will still be one or two buses that I can catch and get to my destination on time.
Sky
10 Sep 10 at 10:14 pm
This is fascinating, thanks for sharing!
My sister has some of the more popularly-known “symptoms” of ADHD, including an inability to sit still-ish for long (more so when we were children) and difficulty keeping her attention on one thing. We were homeschooled, so we were able to adapt our curriculum as needed, but it’s interesting to think of how she would have been in public school.
Seamyst
11 Sep 10 at 5:19 am
Two of my nieces have had a lot of difficulty with homeschooling, and both have been diagnosed with ADHD.
If she has ADHD, odds are that public school wouldn’t have been much of a fun experience at all. It’s not really all that exciting to try harder than your classmates but constantly end up with lower grades, never mind parental reaction because they feel you’re not “trying hard enough.”
I didn’t mention it but in the first grade my teacher told my parents that she thought I had some kind of learning disability (I did not, as far as I know, but). In response, as if this were a personal insult my mother instead had my intelligence tested to prove I was smart/gifted and that was the end of it. Oh, and they found I was nearsighted, and I had to wear glasses for a few years.
This is not to say that diagnosis would have helped me. My sister was diagnosed around that time, and apparently my mother said that she went to some kind of seminar or something, and learned that you’re not supposed to give ADHD children (in those days hyperactive or hyperkinetic, I forget which) food with a foil wrapper and other pretty amazing bullshit. I remember one foster brother I had whose doctor advised black coffee to help him, which more often than not made him vomit, but allegedly “sugar made you more hyperactive.”
It also does not mean that if my ADHD were known I wouldn’t have had any ableism, rather it would have been different and I don’t think school would have accommodated my needs even then. Ugh. Anyway, being ADHD in school can really suck, that’s my point.
Lisa Harney
11 Sep 10 at 6:51 am
Sky,
I have the ability to guess the time, often within about 30 minutes, but I’m not sure what that means because like you I still have trouble with everything else. And when I stop to think about what time means and feels like and how long a week really is, well:
And really, if you stop and ask me to guess the time, I can probably get close. But there’s no timer in my brain that actually keeps track of the time as it happens. At 4:30 you can ask me what time it is and I might guess in that ballpark, but that doesn’t mean I would have remembered I have to be somewhere at 4:30 when it’s close to that time. I don’t know if that makes sense, but it’s is why I try to always have visible clocks.
Lisa Harney
11 Sep 10 at 6:53 am
This is great stuff, Lisa, and I learned some things from it.
I particularly wanted to flag this part: And being treated like I didn’t care, like I was flighty and irresponsible, when this was so far from the truth: I tried to be reliable and responsible, I do care and I hope that shows in my writing, but I am not always able to initiate or sustain activity based on these things.
This is hard stuff to talk about, I know. I’ve often wished for a much richer language than I have to talk about all the ways that intention + honest effort + all the genuine commitment and goodness one can muster nonetheless =/= the kind of success that should follow from them. So many people figure that if you really are serious about making something happen and there isn’t a visible (or visible-ish) problem – a damaged limb, heart trouble, something physical in that way – then it just really ought to happen, and therefore if it doesn’t happen, what was wrong was your seriousness.
It’s a good reminder of how much “understanding” is often not the point. The just, loving society isn’t the one where everyone has a clear mental conception of everyone else’s interior states – it’s the one where they do the things others need to thrive as well whether A really gets B’s situation at all or not. “You were not put on this Earth to get it, Mr. Burton” turns out to be a very true kind of thing.
Hidden Heart
11 Sep 10 at 7:01 am
Yeah, the ironic thing here is that I used to get angry at you for not being able to follow through on commitments, but I think I talked/apologized to you about that a few years ago, once I clicked on invisible disabilities and how shitty that was to hold that against you.
And yes to your final paragraph.
Lisa Harney
11 Sep 10 at 7:15 am
You know, I’d genuinely forgotten about that. Would you like me to resume holding a grudge long enough to then forgive you in some inappropriately lavish manner?
And was true – still is – that there are things I could and should do to make better use of the windows of opportunity I get. A lot of my improved well-being lately is from doing just that. But it’s very, very tricky to figure out what I’d want to say about that for any case but my own, since, well, duh, I don’t have the inside scoop on anyone else’s head.
Hidden Heart
11 Sep 10 at 7:34 am
I do think it’s kind of funny that I had ableism issues about your stuff and you had mild transphobic issues about my stuff and like we both dealt with those and now look where we are.
Lisa Harney
11 Sep 10 at 9:13 am
And that’s how the hive mind grows!
It really is, though.
Hidden Heart
11 Sep 10 at 9:17 am
Sorry, I wasn’t clear – my sister doesn’t have ADHD (keeping in mind that I have no medical training). It’s just that, if she had gone through the school system, it’s very possible that, due to her levels of physical and mental activity, she may have been (incorrectly) diagnosed as ADHD. And then she would have gotten a much poorer education.
As it is, she went to an honors college and graduated with a Classics degree, having studied Greek for four years, Latin for three, two other languages for a semester or two each, and writing a 50-page thesis. (Can you tell I’m really proud of her? ;) )
Seamyst
11 Sep 10 at 12:03 pm
Cool.
Schools don’t diagnose ADHD. At best, teachers can suggest that a student might have ADHD, but it’s up to parents to look into it and medical professionals to diagnose and treat the condition. I have heard stories apparently about schools demanding such diagnoses or the student can’t attend, but I haven’t been able to confirm any. What I have read repeatedly is that critics who like to focus on the idea that ADHD is overdiagnosed will find ways to imply that it works like this.
I think I read a study somewhere that said that the misdiagnosis rate among children is about 3%. I don’t really want to say “This is what’s going on” without backing that up, though so take it with a huge grain of salt. I have only found one study that points to a high overdiagnosis rate for children, and one of the researchers for that paper was discredited because of that paper.
The other thing is the point to what I wrote that there’s a lot more to ADHD than not being able to sit still or focus on one thing for any period of time. I mean, I don’t want to say that your sister would absolutely not have been overdiagnosed, but I do want to say that from everything I’ve read, that’s more of a scare tactic used to frighten people about ADHD, and at least seems to be a lot less likely in practical terms.
Lisa Harney
11 Sep 10 at 1:15 pm
And I mean an incorrect diagnosis would probably be a lot less harmful to an NT child than a lack of diagnosis would be to an ADHD child, because the diagnosis itself doesn’t actually impose anything, and because the treatment can be stopped if it’s obviously not helping.
Lisa Harney
11 Sep 10 at 1:41 pm
thanks so much for this. As someone with ADHD (i tend to think of the hyperactivity stuff in my head as opposed to body. as someone with physical disabilities, that seems to be how that H has manifested) its always good to hear other folks talking about it, making connections, feeling not so alone.
anonymous
11 Sep 10 at 10:31 pm
Apparently (according to Dr. Russell Barkley) thinking uses the same mechanisms as speaking – like facial muscles will fire and such, but not move, so it’s practically the same mechanisms as one assumes from hyperactivity, but internalized rather than externalized.
And I think even then most adults internalize it and aren’t running around and such. And a lot of children aren’t super physically hyperactive, even though they may have racing thoughts, etc.
I’m glad this post helped, thank you.
Lisa Harney
11 Sep 10 at 10:39 pm
“But the name, the name is so very, very wrong. Attention deficit? As I said in my last post, I don’t have an attention deficit. I feel like I have an attention surplus.”
I’d been saying for years that it wasn’t that I had too little, but that I had so much that I had trouble figuring out what to do with it all, but hadn’t come up with an alternate name for it. I was tickled to run across a site (link omitted because this comment keeps failing to post; this is my third try) which renames it “attention surplus condition”.
I’ve been really appreciating your posts about ADHD. While mine is not nearly as impairing as yours in most respects, I doubt I could get my thoughts together to write even a quarter as clearly and eloquently about it as you have.
SunflowerP
12 Sep 10 at 5:39 am
This link. The spam filter was being a big jerk, sorry about that.
It’s kind of funny, because I keep thinking “wait, how can I talk about this when I’ve only known for two months?” and “Do I even have this? Am I just concocting elaborate excuses?” So yeah. To hear you say “it’s not nearly as impairing” for you is kind of surprising to me in a lot of ways, because I don’t even know how much of that comes through (and I was trying not to exaggerate or play anything up, and I’m probably not a good judge of any severity). I mean I know how hard it is to judge these things in general but it is a bit shocking to hear that.
Lisa Harney
12 Sep 10 at 7:36 am
I’m going to toss this one to you because I’ve been thinking about it for a long time. Just hear me out towards the end of the comment.
I was one of the ADHD misdiagnoses. I essentially lost 3 years of my childhood to the attempts to manage a disorder I did not have. The medications made me display hyperactivity symptoms, which led to the medications being upped. It got bad enough that I had a full suicide plan at the age of 7. I can discern the lasting effects on my mental health to this day.
At the same time I have been watching a friend struggle with ADHD. I understand that he has a real disorder, and I’m glad to see him getting treatment. I have no intention of denying that he or anyone else has a real disability.
How do we frame a narrative that allows for both stories? Everywhere I’ve seen denies one side or the other.
Sunset
12 Sep 10 at 11:44 am
I’m sorry that I gave the impression that ADHD is never misdiagnosed or that it never causes problem when you are misdiagnosed. And you have my sympathy for having had your mental health affected. I know what it’s like to have a suicide plan at a very young age and how things can impact your mental health for your entire life.
My point wasn’t that it never happens, because it does. My point is that I can’t seen to find information that confirms that it is as common as critics seem to say, and most of the support I see for it is anecdotal.
Absolutely no one should be forced to go on medication that harms them. :(
Lisa Harney
12 Sep 10 at 11:52 am
Heh…I wouldn’t have commented if I thought you believed it never was.
In some ways we may have a similar goal. The ultimate question between both of us is “How do we ensure people, particularly children, get the help that is appropriate to them and their needs, rather than what the people in power decide on?” It’s a question I’ve rarely seen well addressed.
Sunset
12 Sep 10 at 12:00 pm
Yeah, I’m not even sure how to address it at an institutional level. Obviously, if medication isn’t helping it shouldn’t be kept up for months, let alone years, and parents should be alert to that.
And the third word in my previous comment should have been “if” and not “that.”
My primary position is that people who are misdiagnosed shouldn’t be used to argue that diagnosis is bad at all, mainly.
Lisa Harney
12 Sep 10 at 12:04 pm
Agreed. That’s my primary problem with most of the misdiagnosis “help” – it essentially invalidates the experiences of people who live with ADHD. Personally I think that understanding more about what goes on might actually have been the solution for my case, as it turned out I had a *different* issue going on that wasn’t caught till much later.
Anyways, keep up producing the good reading!
Sunset
12 Sep 10 at 12:25 pm
Anyways, keep up producing the good reading!
Thank you! And I am glad your other issue was caught, but sympathies that this imposed detour caused so much trouble. :(
Lisa Harney
12 Sep 10 at 12:26 pm
“This impulsiveness can mean stuff like trying to jump down the stairs…”
For the record, this is how my ADD-self shattered my leg. Don’t jump down stairs!
Z
12 Sep 10 at 8:35 pm
I think you are the third person to comment here under the name “Z”.
Anyway, yeah, tell me about it. My foster brother jumped down a flight of stairs, hit his head on the overhang, got a concussion and broke his wrist. :( I was much much luckier given some of the things I did do.
Lisa Harney
12 Sep 10 at 8:36 pm
I’m lowercase, though…
z
13 Sep 10 at 12:42 am
True, I forgot.
Lisa Harney
13 Sep 10 at 12:42 am
Don’t know if I have anything exactly similar but I do have the distraction and being-on-time and impulse buying problems and the spinning doing pointless crud rather than nail my focus down on the one thing I know perfectly well I can and should do, but I’d rather gnaw off my foot. I get the feeling like, everything is happening too _slowly_, even the maximum speed I can absorb info is shockingly slow and terribly frustrating, and when I run out of RSS and webcomic updates, that is no fun at all. And yet the things I do as distractions are often more boring than the thing I’m avoiding. Weird.
Julian Morrison
13 Sep 10 at 7:15 am
I’ve always found the way stimulants work for people with ADD to be a pretty clear clue that there’s more going on here than ‘You’re not trying hard enough’. The South Park episode on the subject kinda pisses me off, because my brain just keeps screaming “RITALIN IS A STIMULANT! THEY SHOULD BE BOUNCING OFF THE WALLS!”
I’ve had similar issues because of my depression. I may want to do something, know I NEED to, but because of my illness (it’s espcially bad when I’m stressed) I just can’t find the motivation I need (external motivators work especially poorly for me). I also find that it’s helpful to a) do something all at once while b) multitasking, which probably says something interesting about how my brain works but personally I don’t give a crap.
Jayn
13 Sep 10 at 8:58 am
Thanks, Jayn.
I never saw the South Park episode, but yeah. Although not all stimulants work for all people with ADHD. Some may work pretty well, others may not work at all, or actually makes things worse. It’s like, if a stimulant actually helps? You probably have ADHD. If it doesn’t? That doesn’t mean you don’t. If you don’t? Well, like Sunset said, you start acting like you have it.
I actually find there’s a distinction between depression and ADHD for motivation for me. Like with depression, I can’t find motivation and I just don’t really have the energy to do the things I need to do. With ADHD, I can’t prioritize what I need to do, I can’t stop doing whatever it is I’m doing long enough to get the things I need to do done, and I sometimes need external motivators to prioritize my decisions. And sometimes both of these at once mean I have a really hard time doing much more than fronting an amicable exterior.
But yeah, it’s like, both make it hard to get things done. I’ve just spent too much time looking at what happens in my own brain when different parts of it are making it hard to do what I need. Plus it helps with coping strategies when dealing with them separately or together to at least be able to distinguish them in my own head.
Lisa Harney
13 Sep 10 at 9:11 am
Julian, did you read the “almost physically painful” link? Because I really like her analogy and you reminded me of it.
I don’t experience things being too slow most of the time but I am always rather caffeinated (and caffeine helps me a lot). Recently I had gone a few days without caffeine and things just got harder and harder to manage, and whenever I try to quit caffeine I always end up going right back on it very shortly thereafter.
And if this kind of stuff is causing you trouble – as in not getting important stuff done? Or appearing to make careless mistakes no matter how hard you try? It might be a good idea to see someone about it. I mean I wish I could find a condensed explanation of life outcomes, but I might have to write it myself.
Lisa Harney
13 Sep 10 at 9:42 am
I hadn’t but I just did. Amusing. There’s enough differences I won’t self diagnose, like for example coffee does nothing, I rarely hyperfocus, and I _can_ sit still, although more than a few minutes of inaction puts me to sleep. Also I have autistic-ish stuff like getting wrought up around boisterous conversation or pushy crowds, and taking comfort from the quiet of ear defenders. My genes suck, heh. Although I concede, I do fail at getting stuff done (or panic at the last minute) and that frustrates.
Thank you for bringing my attention to the idea it might actually be medical, and not just “Julian is no damn good at working”.
Julian Morrison
13 Sep 10 at 11:52 am
IDK if this is of any use to you, but it’s not even a diagnosis, just some other stuff.
There’s also talk that like Primary Inattentive with 0-2 hyperactive/impulsive symptoms is like it’s own thing and that stimulants are much less likely to be effective with it.
Not trying to internet diagnose you, sorry if it seems that way. But yeah, I mean if you’re having real trouble it’s worth talking to someone about it.
I only spent a couple extra decades thinking “Lisa is no damn good at working.” :(
Lisa Harney
13 Sep 10 at 11:58 am
Thank you :-) SCD doesn’t match, ADHD-PI looks interesting. I’m a little wary of browsing for symptoms, that’s a good way to catch hypochondria. I’ll ponder getting some variety of assistance.
As for you, the fact you produce an excellent blog is very much the disproof of “no good”. But having that self image is no fun, I know it.
I do sometimes wonder if non-neurotypical people are not at all “broken”, but just suited for some other potential form of society that doesn’t yet exist. I think I’d be very happy in some posthuman cyberpunk future.
Julian Morrison
13 Sep 10 at 12:11 pm
Yeah, I understand being wary, I didn’t want to like flood you with information, but they were thoughts.
And thank you for the kind words re: the blog, although I have two co-bloggers who have done a lot while I was much more idle.
I don’t think neuroatypical people are broken at all. Even if we have trouble functioning in society? That’s not because we’re broken, it’s because society is organized around the assumption that we are.
Lisa Harney
13 Sep 10 at 12:15 pm
I also have ADHD, no ability to judge how long something will take (or if I’m hyperfocusing, how long I’ve been working on something). However, I can tell time without a watch accurate to within 5 minutes much of the time. I suspected this had something to do with my patterns of fatigue and caffeine withdrawal, but I’m excited to hear that others with ADHD also can do this. I like to say that my ADHD is actually just a very unpredictable super power, and this is totally more corroboration for that.
suspectclass
13 Sep 10 at 7:09 pm
“I was much much luckier given some of the things I did do.”
I’m previous Z, by the way. And yea. Frankly, given how inclined I used to be to that sort of movement (and how clumsy I am) I’m surprised I never broke a leg before.
Anyways, I wanted to mention two things! First, I never thought about caffeine that way and that’s fascinating. I used to drink a lot more tea now and I wonder if that helped more than I realized. Time to experiment.
Secondly, the biggest way I think my ADD (which is, admittedly, likely mild to moderate) has impacted me is in my self-views. Obviously that is affected by a lot of other things, but I really think the most damaging part of the disorder for me is that I just see myself as SO LAZY. Which makes it harder to do things, which makes my anxious, which makes it even harder. A bad cycle.
This also ties somewhat to this post, which discusses the benefits (and also downsides) of Early Intervention for Autism. I can see similar arguments made for ADD: http://quixoticautistic.blogspot.com/2010/08/early-intervention-my-two-cents-and-my.html
I don’t really have a point, other than I look forward to seeing you write more about this. I wish I could recommend “The Short Bus”, which is a lot about this issue and gave me some insight but there’s a really, really cissexist chapter.
Zoe
14 Sep 10 at 8:48 am
I wrote in your last ADHD post, and wanted to relate to a comment or two I’ve read about not being able to get a diagnosis. I have the unique situation of having various doctors, teachers, and psychologists trying to diagnose me with it for much of my life, but both my parents and eventually myself ran away from those attempts.
In my oh-so-typical history of flipping from job to job (I’m finally getting better at holding them,) even here in Canada I am left with an inability to get proper testing. The only option available to me other than spending some $2000, is to speak with a general intake psychiatrist at a local teaching hospital — or rather speak with a student, have others watching behind a mirror, etc. It takes about an hour and they refused to answer my questions about the psychiatrist’s specific experience with ADHD, gifted ADHD, etc. It was rather humiliating.
I hope to save up the money to pay a psychologist to actually diagnose me, as I am interested far more in accommodations than I am medication. Psychologists cannot prescribe me medication, though thankfully my GP is willing to do so (she’s known me my whole life.)
My second attempt at college, my psychologist tried to get me in to the really good comprehensive testing, the $2000 stuff, covered by the government as I was a student. As per my first attempt though, despite my good grades my inability to keep to deadlines and even up with the level of self-regulation and studying required left me in the dust. It was horrible because I had no idea what was going on and became depressed.
Undiagnosed ADHD is often a vicious cycle. I relate to everything you said here. Sorry for the random sharing, it just feels so good to see others acknowledging this stuff and educating others.
Jesse
14 Sep 10 at 9:23 am
Thanks for this post. For whatever (as yet unstudied) reasons, trans people seem to have significant rates of ADHD, per anecdotes from local therapists. I don’t know if there is something pre-existing, which plays into gender issues and how we cope, especially as young people, but it is worth looking at. I have often wondered for myself (faab, dx’d in my thirties with the inattentive form, later transitioning) whether defending myself from the gendered socialization pressures, plus ADD (minus the H) played into not figuring things out earlier on both counts (learning challenges and trans issues).
Tom
14 Sep 10 at 10:04 am
suspectclass,
Cool. And yeah, It’s interesting about the guessing time.
Zoe, My self views have been pretty informed by self-hatred because of all the undiagnosed ADHD I’ve been living with. The videos I linked in my first post make a lot of compelling arguments for early intervention – although the guy who did it is very much pro-medication, he seems to have data to support what he’s saying.
Jesse, It’s pretty ridiculous that you have to pay $2000 for a test like that – I mean, that’s like, how many bureaucratic barriers need to be between people with ADHD and the help we need? I mean, this is the kind of thing that makes it hard to get help in the first place, and it actually conflicts with ADHD directly.
And yeah, that’s kind of how college went for me. I could maintain performance until the constant stress meant I had no spoons left and basically crashed and burned.
Tom, I’ve noticed that a lot of trans people I know have ADHD. I don’t know anything beyond anecdotal evidence. I think having AD(H)D complicates being trans but it’s hard to predict how that’ll play out for any given trans person, although I wonder if there are any trends.
Lisa Harney
14 Sep 10 at 1:14 pm
Thanks for this. My brother and boyfriend have struggled with ADD their whole live, and deal with/exhibit a lot of the same symptoms you describe. I hope you know that other people are out there and understand what it’s like to deal with what you do.
Anna
14 Sep 10 at 4:59 pm
Yeah. I definitely think of the people who deal with this who don’t know what it is can find information that will help them.
Lisa Harney
14 Sep 10 at 5:01 pm
@ Tom, Lisa. I’ve seen the anecdotal evidence too, which is why I found the ‘pain’ post so interesting.
Because superficially there seems to be a strong resemblance between certain ADHD symptoms and pain avoidance strategies.
Routine tasks give time to think and become aware of the dysphoria. Necessary tasks would most likely involve assigned gender presentation. Personally rewarding tasks that can be fully involving would constitute successful pain-management-by-distraction measures.
To take the view that these over the course of years might reinforce an underlying ADHD condition doesn’t seem so far out, and an actual higher than average trans / ADHD intersection rate might support it.
What that could mean, though, is that, say, cognitive therapy that might be, as stated, ineffectual with ADHD might provide rather more beneficial results in terms of altering such patterns of reinforcement in trans people.
Very speculative, obviously.
Sophia
14 Sep 10 at 5:29 pm
Yeah, but I mean the anecdotes get as far as lots of trans people with ADHD, but then we all have different lives/narratives and probably our own coping strategies? Like, I mean I think being trans and ADHD meant my coping strategies were not efficient. Being distractable did not mean I was able to constantly distract myself from dysphoria without actual escapism – such as books, games, etc. It meant I could easily focus excessively on my dysphoria as well. I didn’t have a consistent reaction.
The thing about ADHD is that it makes me inconsistent, and like I can’t really use ADHD as a coping strategy like that under a lot of conditions. I can use it to distract me from, say, waiting a few hours before going somewhere, but I can’t use it to distract me from something that keeps demanding my attention, or especially when I am in a lot of, well, psychological or physical pain.
Lisa Harney
14 Sep 10 at 5:54 pm
I mean, tbh, I am still working a lot of this out for myself and I’m not entirely comfortable trying to dissect how my coping strategies in general worked in high school while I was trying to function with both being trans and being ADHD (and only actually knowing about the one) and trying to appear as much as I could cis and NT to other people just to get through each day. There’s so much tangled there that I don’t even know how to begin answering that question. All I can say is that it took a lot of energy, and wasn’t all that effective.
Lisa Harney
14 Sep 10 at 6:03 pm
@Sophia,
As a trans person with ADD who’s had plenty of cognitive therapy, I find your idea to be wildly speculative and irresponsible. If we were taking theory this would be one thing, but we’re talking the reality of our lives. The only thing that helped with my dysphoria was transition. The most effective treatment for my ADD has been pharmaceutical.
Lucy
14 Sep 10 at 7:37 pm
@ Lucy. I spent several days wondering whether it would be responsible to air this or irresponsible not too, and when the idea of an intersection was raised I breathed a sigh of relief that there was an appropriate space to raise it.
Not every trans person transitions ; not every form of cognitive therapy is the same ; not every diagnosis of ADHD is correct ; individuals may respond differently to different therapies.
I’m absolutely NOT suggesting that any person, trans or cis, should in any way ignore diagnoses or try alternative therapies INSTEAD of recommended ones.
One point about the pain post was that it’s extremely difficult to convey dysphoria to cis people. IF it is relevant to some trans / ADHD cases, then it’s not that likely to be fully taken on board by a diagnostician. POSSIBLY it could be a complicating factor for which other ADDITIONAL therapies could be of use in terms of that intersection.
Sophia
15 Sep 10 at 4:05 am
I probably should have been more explicit, but this line of discussion is making me feel uncomfortable and not a little othered. I don’t know how any other trans person who also has AD(H)D feels about this discussion, but right now I feel like I’ve been asked to prove a negative.
Lisa Harney
15 Sep 10 at 4:28 am
I’ve been undiagnosed for pretty much all of my adult life, though friends of mine do speak openly about the points where I stim, lose the plot, and suchlike (among my friends we have people with asbergers, ocd, add, and a few other neurodiverse conditions). I’m lucky in that I have friends good enough that they let me bail out without warning when stuff gets too much – I’m also in an industry (arts) where these things are reasonably common.
I have an instinctive response to the suggestion that therapy might help trans conditions which runs along the lines of ‘F**k o*f’ this has come from my experience of psych’s that i have had to deal with – and this has led to me having a response towards adhd and suchlike diagnosis which is untrusting to say the least – not the diagnosis itself, but the person doing the diagnosis – I haven’t had a good time with shrinks.
I’m currently being nudged towards diagnosis by a doctor who i actually trust, this is due to almost crippling ptsd and anxiety (on top of adhd symptoms) which I face whenever things start to get hectic – I’ve managed to get this far in my studies due to coping mechanisms and force of will thus far, which isn’t to say that it’s easy at all (it’s not). I do already have a range of coping mechanisms (as stated) that come from meditation and my art practice, as well as avoiding things which I know I’m not good at. they’re holding together thus far, but it’s not a secure feeling.
I don’t know that there are coping strategies that could be taught to deal with ts’ity, I personally feel that only transition helped me at all, but it’s quite possible that I could have benefited from having a person help me with coping strategies for being trans in transition, in fact that could have helped a lot. I haven’t had that person at all, so it’s speculation on my part.
I’ve personally stayed clear of psychs/shrinks during my transition due to their power position and the fact that they could destroy me with 4-5″ of writing – Now, clear of the point where I cannot argue I’m starting to look at possible ways forward with issues less crippling than my TS’ity was (ptsd, adhd, etc). I still don’t trust those people. thankfully I have a doctor who understands this.
It’s a much more complex issue than whether one could or could not get help in theory – in practice it comes down to exactly who is in a position to help, and their prejudices – I for one am not entirely confident in the ability of adhd specialists to offer help to trans people.
Em
15 Sep 10 at 4:47 am
Sorry, I was editing in notepad, and thus didn’t see your response.
Em
15 Sep 10 at 4:49 am
No, your response is fine.
Lisa Harney
15 Sep 10 at 4:50 am
nevermind – I saw a new comment and went into a spin :P
Em
15 Sep 10 at 4:53 am
hmmm : and P makes a smiley face – odd.
Em
15 Sep 10 at 4:54 am
Gonna turn that off, keep forgetting to.
Emoticons off.
Lisa Harney
15 Sep 10 at 5:02 am
NOw that I’m all the way to the bottom of the page, I forgot anything I was planning on responding to! I guess I can just talk about my own experiences and things I’ve tried for keeping organized, etc. Again, just to be clear, these are things that have/haven’t worked for me personally. Not things I’m telling everyone to do/not do.
The same fabulous GP who started me on my testosterone without need of a letter because he thought the gatekeeping was stupid also got me my ADD diagnosis and started me on Ritalin. What really frustraed me was that he said all of the symptoms were plainly visible in my social history for anyone who cared to look.
The kicker for him was when he asked me why I thought it took me 5 years to finish my BA and I told him it was because I am a &*%# moron. He said he highly doubted that. No one had ever corrected that before without adding on the standard “you just need to try harder”. I felt heard for the first time ever.
I’ve tried a ton of stuff. Some things have worked, and others haven’t. Again, not telling anyone else what to do, just sharing.
The Watchminder 2 was horrid for me. It’s a watch that has about 20 different settings along with word reminders that come up so you can remind yourself to do different things. I was excited. My girlfriend was confused, because she thought simply setting a cellphone would do the same basic thing.
I couldn’t set it, and nevermind that the guy who invented the thing said to email him when I got it and he would walk me through it. That was just too embarrassing. I didn’t mind that it was enormous and weighed a ton. I’m used to medical stuff looking odd. But when I thought I had set it for fifteen minutes, it set for 12 hours. Eventually, it just vibrated every ten minutes, so I left it sit at home.
My subscription to ADDitude magazine has been an AWESOME lifesaver! They have interesting articles on all sorts of ways ADD/ADHD affects life. I learn about conferences, schools that cater to students with learning disabilities, and products that can help.
One thing they recommended that I’ve found helpful has been getting one of those calenders that people put on their desks and putting it on my wall instead. Lots more room for writing things down.
This week I found something else that’s been a wonderful help. I go to a lot of meetings for community work. A friend of mine has some paper just for meetings, and I found it at Office Depot. It’s called a Cambridge Limited Business Notebook, and it cost $10, I think. The paper literally is fill in the blank, with slots for who was at the meeting, what the goal was, notes, and what action items I need to do. It’s already worth the price.
I have Inspiration 8.0 software on my laptop. If anyone remembers making the brainstorming thing in school with the bubbles on the board, Inspiration is the electronic version of that. A cool thing about it is that is has templates for sll sorts of activites in it. Science projects, book reports, etc. It also will convert a mindmap into an outline, and the other way round. I don’t use it much anymore. I got too easily distracted by it, and it became a toy more than a help. :-)
I also have TextAloud, which is a text to speech reader program. I originally wanted it for getting my books in grad school on CD rom. The drawback was that I would fall asleep listening to them. I thought maybe if I spent money on a voice or two, that would help. It didn’t. What I do use it for is reading back papers to check for flow issues and overwordiness. There TextAloud has been beyond helpful.
Where I’m stuck is caffiene. Like a lot of folks, caffiene helps with focus. However, I’m no longer allowed to drink coffee because of acid reflux. I can’t have diet soda for other health reasons, and I try to stay away from regular soda because I’d like to drop some weight. I can’t take caffiene pills because I got addicted to them in college, and I don’t know how many of them I can take without overbalancing my seizure meds and causing a seizure. So if anyone has suggestions, I’m up for it. Occasionally I do drink soda and/or energy drinks (Monster).
Now, again, these are things that have or haven’t worked for me in particular. So I may or may not like the same things that have worked for you. I’m just sharing, because sometimes we need all the help we can get.
Lincoln
16 Sep 10 at 8:49 am
Thanks! I often try stuff that often falls through but most of my attempts were prior to knowing. I am kind of worried that I’m not really sustaining attempts to establish new coping mechanisms lately.
Lisa Harney
16 Sep 10 at 10:52 am
Lisa,
I too feel like I’ve been asked to prove a negative. Suddenly I felt myself again being put under the microscope with Science! being used to derail from the personal experience that you’ve related, that I can well relate to. My life is not the testing of somebody’s speculation, and it feels very controlling to have someone go all “objective” on the very subjective experience you related here. I’m sorry if I contributed to a discussion that left you feeling othered, but I was feeling pretty freaking othered myself.
Lucy
16 Sep 10 at 11:08 am
@Sophia:
“Because superficially there seems to be a strong resemblance between certain ADHD symptoms and pain avoidance strategies.”
Bullshit. My own ADD often resulted in hyperfocusing on my dissonance, making it far far worse. It’s amazing how theorizing gets in the way of actually listening to the folks having the experiences.
genderbitch
18 Sep 10 at 5:53 pm
The thing about ADHD is that on the outside, it can resemble a bunch of different things depending on how each individual with ADHD (and each individual with something else that might resemble ADHD on the outside) has managed in their life.
ADHD can resemble bipolar disorder, asperger’s, dissociative disorders, and more. It can also be co-morbid with them, which has its own intersections at each one. My sister has the intersection of being ADHD and living in chronic physical pain, and I don’t know if she’d be comfortable or able to explain about how those two intersect. I myself intersect with trans, ADHD, depression, anxiety… I’m pretty good at hyperfocusing on my (emotional) pain & thereby making it effect my life more strongly. I mean, I do utilize my distractability/hyperfocusing to ‘deal’ with some of my anxiety, sometimes, but other times it just makes it worse instead. Variable response/results.
Jesse
20 Sep 10 at 12:28 pm
Er, by resembling these things however, I should say that it is still -not- those things. The causes are different, the experience from within is different.
Jesse
20 Sep 10 at 12:30 pm
[...] Lastly, Lisa Harney over at Questioning Transphobia writes ADHD Isn’t Trivial: [...]
Disability Blog Carnival: Identity « Astrid's Journal
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