It’s been building for a while, this offensive ball in my gut. The cyber-universe is about to cop the wrath of a long-building ADHD rage, so pull up a chair (and snacks. I recommend snacks I’m angry about a lot of things) and come along for the ride!
My issues stem from the way it is described, and the huge disservice it does sufferers and the fear or worse reason to run it can create for friends or family who may read it or be told these things as fact.
In April 2013, aged 31, I was (finally) diagnosed with moderate-to-severe scale Adult ADHD. Without the hyperactivity, or ‘predominantly inattentive’ – common in both female and general later or adult diagnosis. I call a massive Bull. Shit. on the title and its inaccurate suggestion of my problem – but I’ll get to that. It’s not that the diagnosis is wrong – it’s very much me all over now I fully understand it, but whoever chose that name – and most of the other ways to describe ADHD – is an idiot.
Since then, I’ve been researching it to absolute death as I am inclined to do with something new and interesting (confirmation of diagnosis, or diagnostic confirmation bias? Those with ADHD do love novelty, but so do lots of ‘normal’ people). And now, 9 months later, I have uncovered a ton of things. A lot of those have helped me enormously, but a lot have made me quite angry. Some have seemingly been missed by anyone who could change it, too. I’m not claiming a single idea or explanation of mine here is original or a completely new way to describe it (although it’s ‘my own’ as far as I had the thought by myself, I just expect other people did too) – but they are not the ‘common’ way.
I won’t even say my ideas are ‘right’. But like many others, I’m also keen to be part of the conversation to get us closer to what IS right.
I’ll start with my half-comment above. The name. It’s completely wrong. Whether you’re hyperactive or not, it’s wrong.
Attention Deficit Hyperactivity Disorder. Predominantly Inattentive, to boot.
Ok. First bug-bear. Not a single one of us has a problem with paying attention, or as some like to say – an INABILITY to do so, regardless of whether we are with or without the ‘H’ in our titles. In fact, you’ll find the opposite is true – we are probably 1000 times better than the average person at doing it.
Our problem is that we have a problem in Attention Direction and Discrimination.
For every one thing you notice, we’ve noticed at least 10. This is a double-edged sword. Most of our symptoms are. So when I hear or am told time and time again that I just can’t pay attention, I feel ripped off and misunderstood – and what I do notice that others don’t is written off as inconsequential, when often it is not. A distinct talent of mine and of this disorder is disregarded because of an inaccurate description of its downside. Add in a specifier that says I am ‘especially inattentive’ and you may start to see why I feel put out by it.
For example, we keep getting described as bad drivers. Sure, sometimes we can be. But – we are FABULOUS passengers. Some people may get annoyed at the ‘backseat driver’ feel of having an ADHD person in the car, but we’re not saying a SINGLE THING because we think we are better drivers than you are – in fact we may think the opposite or be thankful it’s you and not us behind the wheel. We just noticed something and we’ve probably also simultaneously noticed that we can’t see you reacting to it. We are trying to help avoid an accident.
Can you imagine the guilt if you saw something, said nothing, and an accident occurred? Oops, sorry – didn’t want to offend you… that’ll make up for injuries, damage or potential DEATH? I think no.
Our conscious experience with attention is more like the eastern/new agey concept of the third eye (all seeing) than that of sleeping beauty (sees nothing, asleep and nothing wakes her)!
Unfortunately we end up in a catch-22. Being misunderstood is probably one of the most lifelong torments those with ADHD deal with, and we can fight quite hard against this perception or reality at times. Yet to get someone to understand us, we have at our disposal all this information that isn’t right either. Even in supposedly ‘helpful’ and positive places. Or via the professionals that treat us.
We are noticing everything, consciously checking off a million things at once, all the time. If we’re noticing what looks like nothing then we’re busy with noticing all of our thoughts, instead. We’re not spacey/zombified or failing to notice anything. We’re just ‘locked in’.
There is absolutely NOTHING inattentive about inattentive type ADHD.
Fighting against this for so long is often how we end up dejected, so when you ask us what we’re doing/thinking/noticing – we say ‘nothing’. It’s just easier.
I was thinking of an analogy for what it’s like in my head when I’m locked in, after reading a few others. I came up with one I think works for me.
So, my mind is like an island where all my thoughts and feelings and perceptions live. It’s surrounded by a large river-like gap, only in that gap is quicksand. That is what stands between my mind and my outward interactions, actions etc. So to get to what you see – I have to make it to the other side. When I say ‘hello, how are you?’ – I have had the coherent thought and it has to make it across quicksand for you to hear it, for me to actually say it.
Sometimes it’s fine, there’s a bridge and it was down and locked, and the sentence made it over, easy. Other times if I take it slow and steady, I get through it – so it might take me way more effort than makes sense just to get that simple phrase/question out. Yet other times, the bridge might go up while I’m on it, dropping me into the quicksand or making me run back to the island. You might get half of it, or it is in part jibberish nonsense. It might have been such an effort to make it that I’ll say it and immediately be distracted – recovering from that effort. And yet other times, that bridge is tightly tied UP, there is no other way across, and that quicksand is particularly dangerous.
In those times, I think it. Want to say it. But nothing comes out. I do nothing. As a result, I look rude, awkward, dumbstruck. Spacey. Inside my head – on my island – it’s fine, I know what I want to and it’s clear. I just can’t share it with you. And I am judging myself for it. I’m aware I *should* be doing something.
The other person if there is one, can help here by using touch and eye contact along with speech or activity – to ‘be’ my bridge and let me get out of being stuck inside my head. This and other things for non-ADHD people will be in another blog post too.
Hyperactivity is far more prevalent in the ‘non-hyperactive’ group than people realise, too. We are just as hyper as the kid bouncing off the walls next door. You just can’t see it. But we can! We have the hyper kid inside our head going a mile a minute. This is the inward-looking ADHD. The hyperactivity goes into us, not out of us. But it’s still there.
I’d be interested to see what personality types are diagnosed with this variant. Are they all introverts? Or are they those with low self-esteem? Shy and unsure after one too many admonishments? I don’t know the answer. Hyperactivity and impulsive behaviours do not need to be out of control or even visible to exist. My interest in the novel shows mostly in what I read, learn, research – but because I am an entirely loyal and faithful partner – entirely against the idea of cheating (put down as ‘novelty seeking’ in many a list – again, offensive), does it mean I’m not chasing novelty? Absolutely not.
Perhaps those with ‘inattentive ADHD’ are just the ones who didn’t tend to act on the tendency to be defiant and oppositional? Who thought those things but didn’t act? I might find out for sure, one day. I know for me personally I have the thoughts. I may quietly defy and oppose or find a way to do it in an allowable way. I’m a sucker for finding a loophole!
And since I mentioned the impulsiveness and novelty seeking or ‘look shiny’, I’m absolutely bloody sick and tired of reading on repeat about how you have to be careful if you are in a romantic relationship with ‘one of us’, because the distraction of novelty and our tendency to be impulsive means that we’re just biologically inclined to cheat. There will be a separate blog on this, it’s that bad. All you need to know now is that it is absolute crap. We do HAVE brains, you know.
It’s my personal belief that people who use ADHD as an excuse to cheat are grasping at straws. If you’re not ADHD please do not listen to this ‘advice’ or judge your romantic interest as if they have or will do this.
Moving on, my names for the different presentations – because there definitely is a range – are as follows. First we go back to its original acronym.
ADD – Attention Discrimination Disorder.
Forget the H – we’re all hyper in our own way.
The variants I see are not hyper/inattentive and combined although the last one still exists.
ADD-C = attention discrimination disorder combined type.
ADD-I = attention discrimination disorder internalised type.
ADD-E = attention discrimination disorder externalised type.
Yes. I like that much better. Internalised replaces inattentive, and externalised replaces hyperactive. For if we are diagnosed with ‘inattentive’ type, it is because we’re symptomatic internally more than we are externally, and vice versa if we are diagnosed hyperactive type. The ‘rowdy boy’ stereotype is externalising the result of his lack of discrimination, and he is showing his symptoms on the outside, interacting externally with his distractions or what he’s noticed. All you see him do is jump up unannounced and seemingly do something unrelated to anything at all. The ‘daydreaming girl’ stereotype is internalising the result of her lack of discrimination, and she is only showing her symptoms to herself in her mind, interacting internally with her distractions or what she’s noticed. All you see her do is staring, perhaps rhythmic fidgeting, not seeming to listen to you.
Don’t assume she can’t hear you, or isn’t listening though. My teachers regularly got the shock of their life thinking that I was off with the fairies, not paying attention then attempting to catch me out with a test. In fact all over my report cards they have written specifically, year after year:
“She often seems easily distracted and as though she is not paying attention, but when questioned on the topic she almost always answers correctly.”
An example about the presentation/experience for the person with ADHD:
Both types may be distracted by the sun on the window and how the light is coming through.
The ADD-E or hyperactive person is up and over at the window, checking it out, walking around to see if the light changes, moves, disappears. They might then move onto something else they notice while over there.
The ADD-I or inattentive person is thinking about the same window, perhaps imagining doing those things, thinking about whether it would move or change or disappear and following a trail of thoughts about it all while remaining seated. They might then move on to another thought that they notice while thinking those things.
You can see the first example just by being in the same room – the ‘rowdy boy’ – and he gets pulled up, reported and assessed – diagnosis ADHD. You don’t so much see the ‘daydreaming girl’ – unless you happen to notice her (since she’s quiet) and then all you notice is that she’s not looking at you, perhaps staring into space.
It’s a little like the concept of thinkers and doers – ADD-E are the outward doers and ADD-I are the inward thinkers, however this is often with the exact same thing. The disorder or ‘problem’ itself is not different, just how the problem gets acted on, and how it looks to the outside world.
In addition I believe if the hyperactive person has a thought they are distracted by, it leads to an action of some kind that may or may not be related to the thought (often is), while the inattentive person just thinks more intensely, more ‘sideways’, about it.
So you’re aware of my ‘solid research background’ (that’s a little sarcastic), I have two personal experience examples and nine months of reading research, anecdotal evidence, raw data, bad opinion, good opinion, ADHD denial opinion, medication and pharmacology information and so on. My personal experience is with myself and my oldest son who is a teenager. We are both what they call ‘2E – twice exceptional’; that is – we are classed as academically gifted but also have a ‘learning disability’ – we both have professionally diagnosed inattentive-type ADHD. I’ve had friends (and suspected family) with classic ADHD so I will see what I can pull from there but mostly I’ll rely on what I know best. Our diagnoses came within a couple of months of each other (but mine was actually first), after my psychiatrist suggested assessment for him would be worthwhile.
Both of our diagnoses came from highly skilled ADHD specialists in their fields who are highly respected, known for being ACCURATE (important in the brain doctor department, see my previous posts!) and who were incredibly respectful of us as intelligent human beings who may know a thing or two – also rare! Mine was a Psychiatrist, my son a behavioural paediatrician who ADHD and Autism Spectrum Disorders – which was important because a lot of people had the mistaken belief my son was on that spectrum while I always had a gut feeling it was something different, and just learnt how to work with his ‘quirks’. As he got older, I realised our similarities.
Another major offensive moment for me, is the categorising of ADHD that is still floating around, that calls this disorder a ‘mental illness’.
No. Just, no.
Here is my idea for the eligibility definitions and quirks of the brain. They are just my own.
Mental Illness: non-biological, behavioural problems that are currently CURABLE.
Mental Disorder (or disability if you must, as it is now): non-biological behavioural problems (without physical symptoms) that are currently NOT CURABLE.
Neurological/Neurobiological Illness: biologically based problems with physical symptoms, that are CURABLE.
Neurological/Neurobiological Disorder (or disability if you have to): biologically based problems with physical symptoms, that are NOT CURABLE.
Depression is a mental illness, but ADHD is a neurological disorder. You can recover from depression however you can only treat ADHD, not cure it. We have distinct physical symptoms – it’s not just moods, thoughts or behaviour. They are beginning to realise they can use physical diagnostics to SEE the disorder when they watch the brain, and that there are distinct differences in actual brain structure at both the molecular/teeny tiny scale and at a larger more clearly seen scale. At the moment, standard belief clinically is that psychopathy is a more of a mental disorder (incurable mental illness), while meningitis would be classed under neurological illness (curable neurological illness – brain infection).
It’s not a perfect list, and I’m not quite happy with it. For people who don’t finish a lot we’re incredibly high-rating on the perfectionist scale! Probably because ‘close enough’ to the average attention-holder is far closer to right than the expansive chasm we see between ‘close enough’ and ‘spot on’. Close enough to us is a lot closer than to those without ADHD (or perfectionist traits). You may not realise if we’ve learnt to keep our assessments quiet! You’ll find this is why we have the same kind of trouble starting.
I have so many more things that get to me, so expect more. But I’ve kind of petered out, this round. It happens a lot 🙂 I look forward to being able to create a more helpful piece for those who know and love us.