Neurodiversity

Articles about interesting research, personal experiences, and societal acceptance of ASD, ADHD, etc.

  • He has Parkinson’s
  • She has epilepsy
  • He’s schizophrenic
  • She’s autistic 

No, it’s not the setup for this year’s wackiest RomCom.

It seems one might possess Parkinson’s like a teacup chihuahua or a classic mustang whereas autism is who you are. You could make the case that autism or schizophrenia dramatically shape your personality in a way that defines you, while the other two do not…but you’d be wrong. The communities of caregivers surrounding them commonly describe what they know as Parkinsonian and epileptic personalities. What decides this automatic and unnoticed distinction between Being a disorder and Having a disorder?

How can you be a diagnosis? The taxonomies of neurological types used to label people aren’t real things that people can “be”. They are checklists where we matched the diagnostic criteria enough to call the result positive. “Enough” might be 4 out 7 matches, for example. Diagnostic criteria are simply a collection of behaviors and bio-metrics accepted by the medical community. It’s rather like asking hunters (the hunting community?) the 7 most distinct characteristics of deer. That might be kind of fun but the heuristic is: “I know one when I see one”.

Different neurologies are utterly real but named neurological types are descriptions, the names for vertices and ranges of behavioral parabolas distinct enough to contrast clearly against normal.

Normal is the smooth melted butter river of behaviors we mostly can’t even notice because of how overwhelmingly common they are. Normal isn’t a thing either, it is a thing that’s going on.  Normal is a strange state, only seen clearly when it is held next to things that are not… a bit like a black light held over a motel bed. Normal isn’t a cool matter-of-fact background to things. Normal is the thing we fear when we make a terrible impression. Normal is the cop we all feel oddly guilty in front of. Normal is being welcomed home or cast out in exile. In meat-and-potatoes reality, there is no break from normality that calls for a celebration.

Throughout human history, Normal functioned as an immorality finder. Where immorality was uncovered, normal was declared missing…even for commonplace behaviors that simply got on the wrong side of something socially cherished. The other side of Normal’s coin is perversion of course. So Normal is tainted and muddled by being a measuring device cum moral cudgel. If you trace it back far enough you’ll find Normal describing primate pro-social behaviors that maximize pregnancies and group survival.

Continue reading

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There is a rather famous story about moths that you might have encountered as a student. The class would have been discussing evolutionary theory.

The common form of peppered moth had a pale coloration suited to hiding on the bark of light-colored tree trunks. This camouflage apparently enabled it to avoid being eaten by birds. Then, in 1848 a specimen with black wings turned up, in the industrial city of Manchester, England. By the end of the 19th century, the dark peppered moth was everywhere, and the paler, mottled version had vanished, becoming virtually extinct.

This was perhaps the first clear instance of human behavior increasing environmental pressure on local species and observers noting and following it. The industrial revolution roared up to speed and the universal use of coal for heating and industrial production had blackened skies and forests. An editorial in an issue of Nature quotes an 1851 railroad guide to the English industrial midlands: “The pleasant green of pastures is almost unknown, the streams, in which no fishes swim, are black and unwholesome…the few trees are stunted and blasted.” Continue reading

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In a few other articles I’ve made the point that random millions of people having babies with other random millions of people give birth to consistent percentages of neurological and psychological types relative to the population at large, generation after generation. Some of these groups are defined as disabilities or pathologies. Example groups ADHD, and ASD are disabilities, sociopaths are seen as pathologies…it’s the second part of the name! They are generally thought to be caused by failures of infant development to complete normally and a pretty strong genetic connection. ASD is the obvious example of a spectrum disorder. Predictable numbers of ASD people are born year after year.

Clinically ASD includes a short list of recognized levels of the disability which exist along a continuum of severity. There’s a break here between the small range of what’s accepted as proven medical science to be autism and the much broader range of people who are legitimately diagnosed as autistic even though they are much higher functioning than the accepted range. It’s tacitly understood by therapists, teachers, parents, etc to be a section of spectrum that could be positioned at the end of the current spectrum and just pick up where it leaves off and run all the way out to those who have a few touches of these traits but are otherwise completely normal. That makes sense as the autism spectrum. I’m grandfathering ADHD in on this spectrum because 80% of high functioning autistics also have ADHD. Continue reading

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Hi, and first of all, I’m incredibly sorry.

1. I knew I had to leave by 2 pm to get here but my sandwich burned and I didn’t notice until the apartment was full of smoke. I couldn’t leave it for my roommates like that so I had to open all the windows and flap a beach towel everywhere to make it a little better. Anyway, thank you for understanding.

2. As a program note, I did see that this was to be a talk with a slide presentation but somehow I missed the thing about being in PowerPoint so a slight format change will require me to hook up my slide projector. It should only take a couple of minutes and maybe one or two of you could help me move the computer cart to a safe place and find like a table or desk that’s the right height for my projector?

3. I’m sure you can relate, I mean I’m only human, but last week, which I admit would have been the ideal time to be working on this, it was like every time I sat down to get started I’d get just crazy sleepy, like can’t-keep-my-head-upright, sleepy. It was insane, then as it got closer to this week I found myself kind of having trouble thinking about it, and every time I’d try I’d get this sort of anxiety stomach ache. I did manage to get some stuff done though like pick up my bedroom and throw away the old stuff in the fridge. It’s kind of a good feeling. Then the night before last my friend had this thing he wanted me to go to so that only left me last night to pull all of this together.

4. In that light, I think it holds up pretty well. Although full disclosure, I thought the book we had to talk about was kind of up to us so I picked “Cujo”, by the writer Steven King because I read it last Summer. I’m sorry I didn’t do “Of Mice and Men” but at least this is an animal-and-people story too!

5. If I may just say so, turning web pictures into projector slides is just insanely expensive, especially a rush job. Like you would not believe how much these cost my friend. So my first slide is these awesome St. Bernard puppies. Can you even believe how cute they are? And look how big the mom is in comparison! Actually these were the ones that showed up first in image search and there were a ton of this same bunch of puppies doing different stuff although it’s not super obvious that it’s different, because the background doesn’t change.

6. So I think the book Cujo by the writer Steven King is really good and exciting. Question 1 says to talk about the conflict at the heart of the story so I guess the conflict is between this huge killer dog and the people.

7. Question 2 asks me to describe underlying issues that shape the story and I guess that would be like, rabies because everything would have been OK without the rabies.

 

 

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I have a theory that the reason that many different neurological types maintain consistent percentages per capita year after year is that somehow it’s useful for constructing human communities. As an incomplete example, I’m talking about:

  • High functioning sociopaths (cold-hearted leader/organizer types) 4%
  • Bipolar disorder (frequently leaders or very creative) ~2.6%
  • Autism Spectrum (technological and scientific innovation) 1.7%
  • ADHD (novelty generators) 5% to 11%
  • Schizophrenia (visionary thinking in any discipline) 1%

I’m not certain how the predictable gay and lesbian* population percentages factor into this exactly but as a guess, they have historically not been focused on raising children. As a predictable percentage of the population not absorbed in raising families and often positioned as outsiders in their own surrounding cultures, they would almost guarantee the existence of an alternative subculture where they might generate new ideas not approved of by our final group. 3.5% 

Everyone else is good old standard human stock who mostly just want family and security. I think the neurotypical brain which defines this group, is every bit as much a specialized filter as the atypical types mentioned above, it is simply specialized to keep things simple and inside the comfort zone. They respond to social pressure far more seriously than atypicals which makes them a kind of cultural cement. Neurotypical breeders are the low center of gravity for every community that ensures stability. They are neither better than our atypicals, or worse, they are the dominant percentage because life wants a solid base to grow from. There are three structural divisions in this last group. ~90%

  1. Male and female. ( the transgender variations and shadings of male and female are very small in number compared to “standard issue” they might be classed with the gay and lesbian populations for our purposes.  0.3%) There are obvious cultural roles and practical roles determined here. One astounding but well-documented fact is that during and after wars, a higher than average number of boys are born. The mechanism driving this effect has no useful model within current science but the reason for it is easily understood: “I guess we better make a few more boys to cover losses”. Whatever the mechanism is, it perceives large events at a community level… and adjusts via individual pregnancies. Males ~51.9% Females ~49.1%
  2. Progressive vs conservative viewpoint, which is strongly linked to personality type metrics and as I’ve explored elsewhere in this blog their “Tension force” creates the defining zeitgeist of every culture. In a polling in June 2010, 40% of American voters identify themselves as conservatives, 36% as moderates and 22% as liberals, with a strong majority of both liberals and conservatives describing themselves as closer to the center than to the extremes (Wikipedia).
  3. Age-based focus and attitude within the general population. From child to teenager to young adult to middle-aged to elderly there is a predictable staged transition through age-based societal roles***: Student, soldier, young married, worker, settled parents, judgemental elders. In a way, this echoes the division of labor within bee and ant colonies. How do they decide what job to do? As the individual insect ages, it progresses through a series of preset “vocational” roles within the hive. For humans, the most basic example of the age-based behavior difference is the openness of the young to change and the resistant defensiveness of the old. This mechanism makes a cultural shift possible, then limits the amount of change.

According to my half-assed theory, being Neuro-Atypical or sexually atypical is not a random failure to create a normal person. Rather it is a structural role predictably of some benefit to the general population. That would explain why the percentages of these varied types are so reliable. Everyone from the most boring normal person to with wildest transgender bipolar radical conservative has a structural purpose in the diverse needs of the human hive. This points to a real-time reproductive algorithm affecting the population as a whole and somehow sensitive to such temporal events as war. It would be no shock if such a mechanism exists, for it to show other concerns about population balance necessary to keep the community organism in good repair. We see a similar balancing mechanism in other hive creatures. In a sense, it’s like a body generating replacement cells of the right kind as needed.

 


  • * I’m not claiming to have discovered an atypical neurology specific to gays and lesbians. They are here because their population percentage is very consistent over time and they tend to occupy a unique reality niche.
  • ** I’m not mistaking transgender folk for gay or lesbian. I’m just placing them in a sex/gender outsiders group.
  • ***  William Shakespear on this preset aging process:

At first the infant, Mewling and puking in the nurse’s arms; And then the whining schoolboy, with his satchel And shining morning face, creeping like snail Unwillingly to school. And then the lover, Sighing like furnace, with a woeful ballad Made to his mistress’ eyebrow. Then a soldier, Full of strange oaths, and bearded like the pard, Jealous in honor, sudden and quick in quarrel, Seeking the bubble reputation Even in the cannon’s mouth. And then the justice, In fair round belly with good capon lined, With eyes severe and beard of formal cut, Full of wise saws and modern instances; And so he plays his part. The sixth age shifts Into the lean and slippered pantaloon, With spectacles on nose and pouch on side; His youthful hose, well saved, a world too wide For his shrunk shank; and his big manly voice, Turning again toward childish treble, pipes And whistles in his sound. Last scene of all, That ends this strange eventful history, Is second childishness and mere oblivion, Sans teeth, sans eyes, sans taste, sans everything.

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“I am a man, nothing human is alien to me.”

~Terrence 

A while back I wrote an article here about understanding the autism spectrum. I wanted people to understand that the classic expressions of autism like sensitivity to sound and not liking eye contact weren’t alien and weird. Those are expressions of normal humanity just with a different threshold for discomfort. If the”slider control” of sensory sensitivity is set for most people at 20 to 30 (on this completely arbitrary scale I’m making up) then Asperger’s might be at 50 and profound Autism at 80. It helps to clarify our relationship to ASD people. They are ourselves in extremity.

But that’s also a limited way to look at it. The spectrum of human neurology isn’t a little train track with stations scattered along it. In the current diagnostic map, there are a set of boxes available to bean-bag toss people into. But many people are profoundly affected by different kinds of “out of tolerance” brain quirks and kinks and they don’t meet the 4 out of 6 diagnostic criteria for this or that disorder. Therefore, whatever is up with them is bundled into the set of things that don’t officially exist and therefore can’t be recognized and treated within the current therapeutic sphere. The same people may be treated anyway by being placed in one of the existing boxes. Without wanting to pathologize everything, or unduly blame the caregivers, this is a bit like being treated for one illness because it sort of reminds your doctor of a different illness she’s more familiar with.

Asperger’s Syndrome, which officially doesn’t exist anymore, had a very distinct behavior profile. It’s understandable that Hans Asperger could recognize this signature in the boys he studied. As his model gained acceptance, more and more people were noticed by their similarity to the profile. More and more people appeared as outliers. In a sense, it’s like looking at a very busy wallpaper full varied shapes and configurations and only noticing one.

Understand me, I’m not suggesting that the world will be a better place if we invent a syndrome for every complaint or complexity. A diagnosis is only a blessing if it helps to make you whole. My son, like me, is a complicated piece of work. Earlier in his school experience, we struggled very hard to create a really good IEP for him with his teachers. This is basically a guide to how the school will understand this kid and deal with his issues. He had a provisional diagnosis of Asperger’s but he might as well have been given an XXX-Large cowboy hat for how well it fit him. At one point I found online what sounded like a remarkable match for his constellation of issues. It was in the European version of the DSM but it wasn’t in the American version. The result was that it couldn’t even be considered because, for all practical purposes, that syndrome existed only in Europe and not in the United States. Imagine if you had diabetes and sought help and were told: “Diabetes isn’t a real thing, at least not in this county”.

As I understand it it’s better to have ADHD in at least some areas of the United States than in most of Europe. Apparently over there they still hear a lot of: “That’s not a real thing.” Over here a surprising number of people with some sort of processing issues are equally likely to be placed in the ADHD box OR the high functioning autism box. Because even at the state of the art level of diagnosis this stuff isn’t crystal clear. We don’t have truly differential diagnostic tests and subjective impressions and biases play a large and rather random role.

Maybe the most important thing to consider though is that the level of the supporting science is very different for this and say cardiopulmonary disorders. Sometimes one gets the idea that medical science is a big vehicle carrying everyone forward at the same rate. We also tend to fall into the mistaken thought that just because there’s a treatment assigned to all things recognized as an illness that that treatment is basically successful. There are plenty of medical issues where the recognized best practices are really not very effective but are still treated as if hand delivered by Moses rather than probationary best practices that should be constantly studied for efficacy.

When it comes to Autism, knowledge has increased impressively since Hans Asperger. But there is a huge crowd of us weirdos sitting in the waiting room hoping to have our problems recognized as real not so we can wear the special cumberbund of victimhood but so we can stand a chance of improving our lot. Right now, even if your processing issue is recognized, the most that is likely to happen is the creation of a small list of best practices and some medication suggestions based on early, provisional research. The results of these at best are generally teeny, tiny incremental improvements in quality of life. Let me tell you, the communities of neuro-atypicals are all out there on the web appealing to each other for hope with the intensity of a family member looking for a lost child. The medical communities that treat them tend toward a kind placidity because they embrace the idea that having a treatment on the books is good enough. I’m not blasting caregivers for not dropping everything to research our crabby and confusing brains but what would help is recognition that what we know now is far from successful and sufficient.

For now, it would be useful to take the spectrum and give it height and width and depth as well as length, to give it some range and subtlety. And let’s not start by recognizing a single pattern and trimming the real human beings to fit. Let us take excellent measures of our many variables and begin to map an overall system of ourselves and our range of possibilities. Let us map atypical neurology like a range of islands and discover their proximity and relationship to each other. Patterns WILL emerge and we will all find our place together in a broad and subtle map of human nature.

 

 

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…in comparison to the mental states and accomplishments that normal folks take for granted.

ADHD isn’t about children paying attention, it’s about problems straight out of “The Man Who Mistook his Wife for a Hat”.

ADHD is the Cerebral Palsy of executive function. Having ADHD is like living in a world where gravity increases and decreases randomly, but only for you. One day you are bouncing along with everyone else, carrying school books and groceries, and the next day your arms and legs are unresponsive. You stagger, you crawl, or even lie flat, unmoving. The next day in low gravity you struggle futilely to return to earth after a high bounce. If you don’t keep up, your grades will suffer, or you may not keep your job. Too bad. You look flakey, lazy, self-indulgent, or at best, pathetic.

Your story about gravity changes nothing, it means nothing to anyone. People tell you to shape up and try harder but you don’t know how, where do we keep the extra TRY? You can’t seem to establish any traction between you and the problem. You reassure them that you’ll buckle down and try harder. Then you walk away with no frigging idea of how you’ll accomplish that.

Remembering, initiating, and persevering

Remembering to act, beginning to act, and continuing to completion are three discrete neurological functions. They each require a chain of cellular events and nerve feedback just like most other biological processes. In healthy people, these steps are as natural and unconsidered as reaching out to pick something up. The beauty of a healthy system is its fluidity and transparency, the invisible, effortless, unconscious event. Naturally, if you aren’t having problems say, pooping, or sleeping or lifting your arm, these problems never cross your mind. Imagine if you had never had such trouble, or even heard of people having these problems: You’d find such complaints mystifying and trivial. Normal people don’t try to imagine ADHD because they feel confident about judging real vs fake complaints and what commonsense calls for. “It’s easy, just do it!”…”Stop slacking” “I know you can do it, I’ve seen you do it!”
While hoofbeats should suggest horses over zebras, this behavior is standing among zebras and insisting that only horses can make that sound.

When the ADHD person says “I don’t know why, but I can’t do this”… normal people are baffled because they don’t recognize mental functions as systems that can fail. NOT having a kink in your pipeline means there is no observable problem for you to troubleshoot. Making these systems “visible” through exercises that reveal the processes to caregivers, teachers, and therapists would be incredibly helpful in upgrading their understanding of ADHD. Inside the brain of an ADHD student, there are multiple systems that can go, as Doctors say, “Kablooey”. When this knowledge becomes commonplace and we can begin to target trouble in particular systems scientifically and creatively it will be a lovely moment for us all. For some reason, right now, clear common sense understanding of the mechanisms of ADHD is bizarrely rare. A very small group is well informed and the vast majority have little or no understanding. Beliefs discarded by science are more common on the frontlines of treatment than current models.

How do I fuck up? Let me count the ways

Without working memory, a task becomes impossible to recreate without crawling slowly through the steps constantly consulting the instructions. Maddeningly we probably know the steps but they refuse to cohere as a list of actions, they won’t “sit in the right chairs”.
Without healthy executive function, we lack an accelerator pedal or ignition switch to get started and we will sit there inert in the face of any amount of pressure to get us going. If we could escape that pressure and disappointment, often observed by the whole class, by doing what is needed, we fucking would. The teacher generally leans in and goes over the process again but the process isn’t the problem, right now the problem is no gas pedal. “How do I make myself start?” is the question pressing on the child’s heart as they strain to comply. Their mental car is stalled out and they are holding everyone up with their dumb broken car. Again and again, they try to start it up and escape this disaster with a little dignity.
Burdened by co-morbidities like depression, anxiety, and dysregulated emotions we are overwhelmed and collapse before (seemingly) small tasks like entitled little princes. Now we look weak, needy, and ridiculous, just like most other days.

Time Blindness

Having ADHD is living in a world where time speeds up and slows down in crazy ways but only for you. Deadlines hover lazily in the distance and then slam forward in a disjointed way that doesn’t make sense and you scramble awkwardly to complete the work, buy the present, or pay the bill. Time is capricious and even though this has happened to you all of your life, you won’t anticipate the next deadline any better than the last one. That’s because this isn’t a failure to learn, it’s perceptual and neurological. We are time blind. We are driving through fog and can see about 20 feet in front of the car.

Every neurology has a sense of time. The common-sense feeling about the length of a month or an hour describes the standardized neurological norms for this function. ADHD people have an unpredictable malfunction in this area which is comparable to incorrectly gauging how near or far objects are and crashing into them over and over. Normal brains look at this behavior and understandably ask: “What is WRONG with you?” from where they are sitting, it looks like this damn kid needs to pay more attention and try harder.

And we totally get why you feel that way…but you think you’re feeling frustrated?

Desk is Lava

Boring and difficult tasks burn. You can’t hold them to completion them because there’s something very much like pain happening. It’s almost impossible to explain what this is like to people who haven’t felt it. Challenging tasks like doing your math homework or filling out work-related forms, become charged with a field like magnetic repulsion, pushing you away. When you try to push through the field you become angry and emotional and you feel that your understanding of how to even begin… has abandoned you, leaving a weird hole in your mind where the answer is supposed to be. A hole where maybe the answer even was, at one point, but now it’s gone. You are probably getting tears in your eyes and nobody else seems to be struggling.

You find yourself developing complicated strategies for beginning or avoiding things. If people observed your internal process they would be shocked at how complicated it may be for you to do something like make a phone call or get around to a chore. Remaining in boring places feels like sitting on a hot stove. When you FINISH with places you need to leave them. When you can’t leave, pressure builds inside you and all the air seems to leave the room. You may feel like you are on the edge of a panic attack. I once quit a well-paying job as a database manager for a large research hospital after 3 months because days lasted 100 hours and my office made me so claustrophobic that I was losing my mind.

Escaping the prison planet

Conversely, fun things and things you love to do are sacred islands of sanity and comfort. There’s a strong chance that you find it hard to stop, that you spend too much time there. Your fun activities may be the only time it doesn’t feel like you vs. the world. Your brain feels happy and relaxed here, the stress hormones ebb away. The thought of going back to the unbending, disappointed, angry, world feels like exile. When people interrupt you and tell you to stop doing the fun thing, you hate them. With ADHD you are out of sync in time with the life going on around you and probably can’t see it. For example, you might react WAY faster than anyone around you but because the data of our own senses always appears to be correct, other people seem to be the ones who are dawdling, taking absurd amounts of time to act or make a point. You are likely too abrupt and harsh with your people and you probably reject this claim when they tell you that: You’re the one who is treated unfairly. They are wrong, interrupting you, and being insensitive. You may be very observant and quick, but you are also probably not as good at reading people and situations as you think. As Elmore Leonard said “If you meet an asshole in the morning you met an asshole, if you meet assholes everywhere, you’re the asshole. You might be goofy and playful to a fault, jokey in a mechanical way that may seem thoughtless at times. There’s probably an overly enthusiastic shortcut in your mind to rapid decision making. It means that bad, impulsive, uninhibited choices are common, you probably burn a lot of bridges and alienate a lot of people. You are probably maddening to the people who love you. They worry about you, yet you may regularly hurt their feelings. You feel they don’t understand you (admittedly, they probably don’t) you probably think they are meaner and possessed of worse intentions than they are.

You spend a lot of energy trying to look like a normal person who does things as well as anyone else. This is called Passing for Normal and it’s a strange goal to carry with you everywhere, all your life. Non-ADHD people spend a lot of time trying to look competent and normal too, but without the 10,000 volts of existential dread, and sense of already having failed. There’s probably a big reservoir of shame and sadness inside you, stored up from endless hours of observing yourself not keeping up with the pack. Of all the people you drive to the point of despair, you are foremost. You talk to yourself with the same baffled disappointment as everyone else, except your inner voice, may rage viciously at the idiot who always lets you down when it matters. Self-hatred is common as dirt. It’s also likely you aren’t aware of how many negative thoughts commonly live inside you. These do the most damage before you become aware of them.

Whether it’s organic or as the result of these sorts of experiences, ADHD people are often painfully sensitive to criticism (or simply imagined criticism ) and are a hair-trigger away from an angry or miserable outburst. Watch out, there’s usually a heartbroken and furious rant, chambered and waiting only for a bad bump. As awful as it is to have one of these unloaded on you, imagine what it’s like to walk around with them inside you all the time.
The American Psychiatric Association (APA) says that 5 percent of American children have ADHD. But the Centers for Disease Control and Prevention (CDC) puts the number at more than double the APA‘s number. The CDC says that 11 percent of American children, ages 4 to 17, have this disorder. We are underachievers. We are often smart and funny and even talented, but we can’t properly plan, initiate, or persevere. We have tons of novel ideas that we write down in notebooks but we don’t complete them. Overall we achieve less educationally and we earn less money.

We have no disability concerning imagination, creativity, or original thinking but we lack long term planning, organization, and consistency. We cannot make coherent maps of our own futures so we are trapped in the short term, fending off dangers we can’t see until they are imminent. We have trouble planning long-term. Many of us are quirky and off-putting because our perceptions and resulting communications are skewed and out of sync with the world. Often, and often unconsciously, we develop eccentric (crazy) ways of coping because so many activities seem a maze filled with dead-ends and random inexplicable successes. Sometimes our anxiety creates mad circuitous pathways of avoidance as we try to reach a goal. These coping strategies look absurd from the outside, filled with unnecessary and irrelevant steps.

Love

Many ADHD people end up hitching our wagon to a practical person who helps us remember to pay bills and buy dog food. Many people who LIKE being the savior are controlling and manipulative. Sometimes we are afraid to leave bad relationships because our daily life homeostasis will collapse. When most people leave a bad partner, they look for their lives to improve, not burn to the ground. This is a relationship as a crutch. Our side of this relationship dynamic is driven by weakness and fear, which is an awful reason to partner and a chilly motivation for wanting someone in your life. The relationship between crutch and cripple is not a great love story.
Not surprisingly, divorce levels are high.

Can’t face it

There’s a cringe-worthy ADHD subgroup who live in denial. Many of these deniers develop arrogant and “superior” personalities and communication styles. They spend a good bit of their lives doing the cognitive dissonance math needed to balance the accounts of their self-worth. This is a life spent whistling through the graveyard of hopes and dreams and rationalizing failures as clever success. My suspicion is it’s a kind of ego version of an emergency inflatable raft. They would be destroyed and sunk by facing their disability head-on, but inside, through the soundproof walls of denial…they still feel it, they still know it but they can’t say it, and neither can you. The resulting ego-as-spiky-puffer-fish is grating, self-involved, and poorly in touch with reality. They may prattle on about how amazing they are. This sort of behavior doesn’t often inspire compassion, remember though, that this annoying person with ADHD probably spent their entire childhood feeling like a failure, being one by objective standards, and being treated like one too. They had to learn to stay upright and keep moving SOMEHOW and denial was their way of avoiding despair and collapse. They inflated the emergency raft of denial and held on for dear life.

The alternative to denial is radical honesty leading to humbleness. It is both liberating and mortifying.

“Hi, my name is Hugh and I suck at so many things.”

It helps to learn the neurological roots of your disorder because you can somewhat forgive yourself for struggling and stumbling where others seem to glide. Most of our lives we think every one of our problems arises from character flaws and moral failings. It’s healing to know that there’s a biological cause that you had no power to correct. Owning your truth though, you take up a life in the open as someone with an unreliable brain and a record of goofing things up. These failings aren’t character flaws, but they are still failings. You aren’t any better at life or work just because you know what causes your problem.

If you face it, you can become a better person by holding yourself accountable for some bad things you now have the power to change. If your loved ones have been telling you that you bark at them with inappropriate anger, you can begin believing them, allowing for this, and consciously softening your answers. The reward is people you love feeling happier, which includes being happier to see you.

Treatment

There are treatment plans and best practices, meds, etc. on the books but this doesn’t mean they are effective only that they are more effective than other stuff we’ve tried. Medical science is tasked with generating a treatment plan when presented with an ailment. Our assumption as medical consumers is “Ergo, that plan works” but when the ailment is poorly understood the treatment plan can just be a modesty screen covering our ignorance. Every ADHD person I know struggles day-to-day in a way that shows how we do not medically have a handle on this.
Treatments relative to the disability are little and half-assed. If you go on meds things may improve, or not. I don’t honestly know how effective my meds are, I have days where I am awesome and days where I am useless. The whole thing is so inconsistent and unpredictable. There aren’t many meds to choose from, they all have downsides, and none will FIX you. Generally, they help you be a bit more effective about ONE of your issues and most of us have several. If you need amphetamines you face constant suspicion and challenges from the medical community who must treat you like a dubious character just for what is written on your prescription. It’s not really their fault as they have to answer to those who govern controlled substances, but that doesn’t mean it’s any less humiliating…or tiresome. Diabetics don’t get a distrustful stare while picking up insulin.

Medical response CAN be toxic with a lack of insight into the disability. One doctor, covering my doc on vacation, refused to fill my prescription. His nurse stage whispered to me, pointing at her head “Because those drugs are for crazy people!” When my prescription needs renewing I may have to “plead my case ” all over again to someone new and possibly unsympathetic. Many people lose their meds short or long term when they change doctors.

Look at me, I’m tender and flaky

As far as why I am doing this, outing myself, consider that CDC estimate of 11 percent of Americans, 4 to 17, living the life I just told you about. They say adults can age out of the disorder, and while it’s possible, I think most ADHD adults simply age out of being counted and treated. This is medical science conveniently writing off a big group of annoying, hard to help patients by saying they moved to a big beautiful farm in the country where they can run around all day with the other weirdos. “Oh, them? um…they got better!”
Meanwhile, grownups with ADHD resign themselves to their quirky, lowered-expectations lives. They try to keep their weakness a secret so as not to risk any of the security and respect they’ve managed to acquire. So imagine the wasted potential, the ache of being a lifelong failure at things most people find fairly easy. Imagine 11 percent of the people you see daily having one tiny arm and one tiny leg and working desperately, in shameful secret, to move and work like everyone else.
Imagine what it feels like to work your hardest for a “Passing with a D minus ” grade. Then imagine everyone looking at you and feeling a range of emotion from indifference to disappointment, to scorn. Without wanting to encourage a victim mentality, many ADHD people have been punished again and again for a literal disability. They are wounded inside and out.
And that’s what it’s like having ADHD.

The other meaning of denial.

And finally, no matter how nakedly honest and articulate we are about what’s wrong with us, every other average asshole we meet on the street knows the REAL TRUTH about ADHD through the magic of lazy opinions and lectures us wherever we happen to be just then, on giving up our medication and trying harder.

The other common class of assholes happily tells us that they have  ADHD based on small infrequent memory lapses or declares “Everybody is a little ADHD!” which translates into “I haven’t thought seriously about what you’ve told me even for a second, not even once!” and also means “Your problem isn’t real, it’s just normal brain function and you are exactly like everyone else”. Bitch, does it take you 3 months to open your mail?

Life with one foot stapled to the floor

Brothers and sisters of the hinky brain, please be brave and stand up, face it, and claim it. The time has come. Daylight yourselves, learn all you can, and educate everyone who’ll allow it. Demand better-informed teachers, psychologists, and medical personnel. Don’t settle for being the damaged and discarded 10%. Until we squawk loud enough to catch the attention of the world and tell our true story, new treatments will remain a low priority and the “experts ” our ADHD children interact with will often not understand them or treat them in accordance with real best practices.

Most people in the mental health “business” have no sense of urgency about the millions of ADHD children who wake up every day only to remember they are a failure alone in a crowd of people that don’t understand what the hell is wrong with them, or how to help.

I want to increase this sense of urgency.


Below is the amazing Dr. Russell Barkley, the best explainer/describer of ADHD. If you watch this 3-minute video you will be more knowledgeable about ADHD than any special Ed teacher or therapist I have ever spoken to. You will probably have a clear picture of it for the first time.

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Every human blends a wide range of psychological variables. Each variable in this list is a spectrum and everyone is somewhere on each spectrum in this list. I don’t think this is some complete list, just some that I was mulling over. And they don’t follow some meaningful rule concerning their position to the left or right. I mean for example that “daring” and “submissive” are not in any sense related because they both appear on the right. There may be some overlap between some of these characteristics that could justify a connection but it’s imperfect and I’m not intending that meaning. I also don’t think that good is on one side and bad on the other.

Every trait on this list is a spectrum.

It seems human groups naturally create a spread of these traits because I can’t think of any culture outside of science fiction where there is a real uniformity of these characteristics.
The old sci-fi tradition often portrayed a trait as a species. Remember Star Trek? Vulcans, Klingons and Romulans, Ferengi? Each of these takes all the variables for a self and mashes them through a single psychological template.

Imagine how profound (and awful) the effect would be on a culture if they exclusively doubled down on the most extreme range of the traits above. In theory, you could have an entire population very unbalanced in a certain direction. But it never seems to work out that way, does it? Perhaps the whole thing is absolutely random but there could be within us a sort of community algorithm to keep a healthy range of steady but flexible groups. Some flexibility in the system would allow different tribes to investigate the effects of leaning more this way or more that way as a group. I don’t mean the tribe would look at it that way, just that cultural differences would naturally emphasize different traits and there could be an impact on survival as a result.

There are also structural, age-based ranges for a number of important psychological factors concerning the community’s ability to preserve it’s form but also change if it needs to.

  1. The very young imprint the culture, taking it at face value.
  2. The young adult/teenager range is the most progressive, the most likely to question things being this way. It’s a cultural version of questioning your own parents.
  3. Families, mated and settled are the meat in the sandwich. They essentially express and live the culture in a moderate conservative way. Naturally, they tend to embrace it but the cracks and stressors show up here too. In worrying about their own children they worry about all children and what world they will live in. Again, this tends toward conservatism but enough worry can turn this.
  4. The old of course tend to be convinced that everything is going terribly wrong and we ought to back the hell up. They are the paragons of cultural retention.

These behaviors are emergent from the developmental moment of each but across a culture the impact is factorial.

I think this is rather like the age-based division of labor in insect hives.  We have a non-random, predictable political range (“tension force” if you read my other stuff on conservative/progressive).  I suspect evolution is a little bottom heavy with more people in the conservative mode but always with enough wild-ass adventurous and rebellious types to keep stirring the pot.

I have a half-assed thought that neuro-atypicals such as Autism spectrum and ADHD people may figure in population dynamics as a necessary element. Autistic people famously helping to advance technology with their obsessive interests and keen observations and ADHD people (I like to think) because their restless love of novelty may contribute in its own way.

I also believe that high functioning psychopaths and narcissists have a place. Their utter lack of concern with others and cold desire to get all the goodies CAN act as an organizing mechanism creating political or religious movements or starting big businesses, etc. Someone sufficiently convinced of their right to rule over others can collect followers like a magnet collects iron filings.

Does it sound like I’m imagining some sort of overseeing entity? Not really. I’m not so much describing what drives this process so much as pointing it out. We don’t understand what drives the balanced population dynamics of hive insects for example. How do they maintain the right population numbers of different castes and such? We know they do, and we don’t know how. If there are principles driving these real-time population adjustments at the hive or even species level, we don’t know what the hell they are or even what mechanism could accomplish it. Science has to patiently build scaffolding closer and closer to any mystery before the answers it finds are truly scientific and not guesses. Along the way, it has to settle all the preliminary questions underlying the big question. We are a long way from solid answers here. Perhaps understandably, most scientists don’t like or respect weird mysteries because there isn’t anything they can say that wouldn’t be wild speculation. They tend to respond neutrally if at all, often suggesting that there’s no evidence for the mystery itself. What is certain though is that human life is coordinated somehow at the community level as well as for the individual. The most practical way I can pursue answers is by looking for patterns of coordination at the obvious level of the world around me. The patterns may start to reveal something of the mechanism as we study them and their relationship to each other.
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