Sunday, December 31, 2006

Is it time for offended aspies and synaesthetes to confront journalists, writers and researchers?

As is my habit, I looked through our local newspaper, and I couldn't help noticing an article (in the Health and Medicine section) about the interesting and quirky, but generally inconsequential neurological condition synaesthesia. The article was written by Roger Highfield and it was about research conducted by academics Jamie Ward and Julia Simner. As I have a few different forms of synaesthesia myself (and I'm pretty sure our kids have synaesthesia too) I was interested.

Seconds after starting to read the article I was irritated and somewhat offended by the use of the word "sufferer" in reference to synaesthetes like myself. I personally do not find it an agony to reliably associate particular colours with particular letters and numbers, and occassionally experiencing a pleasant phantom flavour in my mouth in response to a specific type of emotion is no burden of suffering for me at all. Smelling the smell of fear is no distress at all compared with feeling the unpleasant emotion that can trigger this form of synaesthesia. It is true that there are anecdotes about synaesthesia causing confusion in the numeracy and literacy education of some synaesthetes, but I think these cases are more the exception than the rule. I am sure that I'm not the only synaesthete who believes that suffering is not an accurate way of describing my experience with this condition, as this subject has been discussed by synaesthetes in an online discussion group.

I'm well used to seeing the word "sufferer" used in popular articles about autism and Asperger syndrome, but when I see synaesthetes given the generalized label of "sufferers" I think that's just absurd.

I once posted a members' poll on an open forum of an aspie activist organization asking members (presumed to be aspies) what they thought of the word sufferer, and I recall the vast majority personally rejected that label, and the word "sufferer" was explicitly described as offensive by some. Of course, expressed opinions of members of this forum may not be representative of the majority of (diagnosed and undiagnosed) aspies, but if only one or a substantial minority of aspies are offended at being described as sufferers of a disorder or disease, shouldn't that give journos and writers pause for thought before they use this word in articles or journal papers that they write about AS or autism?

The fact is that it seems to be a journalistic convention to refer to autistics of all types as "sufferers". Isn't it time that autistics and other neurodiverse people who feel offended or misrepresented when described as a sufferer in some small way challenge these writers? Should we try to contact the writers of these pieces asking them why they chose to use this contentious word? Should we ask them if before writing their piece they actually asked aspies or synaesthetes themselves if they suffer, and if so, is the condition itself the cause of the suffering? Should we take issue with the huge and crude generalization that is made when every person who has a condition is described as a sufferer?

Thursday, December 21, 2006

If this is you, you might be autistic ......

You are a very curious person, in both senses of the word.

You have turned fury into an artform, or art, or a compelling public spectacle.

Intellectual curiosity, a sense of responsibility, barely-repressed anger and strong coffee are the four things that keep you going.

You spend most of your time somewhere else.

If you were an actor playing yourself in an autobiographical movie, movie critics would complain that the acting is wooden.

There is no point in putting on music to listen to while you work, because if you are concentrating you don’t hear a note of it.

You have always had “a nervous disposition”.

When travelling on a commuter train you love to look through the centre of the train through the openings between carriages, and watch the way the curves in the track make the train bend and straighten in a way that looks loose and shaky and passive, but also snake-like.

You normally have a look that is reminiscent of a sullen supermodel, but when you do smile it lights up your whole face like a xenon arc lamp, and you have developed a horizontal wrinkle above your top lip from the extreme stretching.

You inherited that amazing smile and paradoxically, it comes with a personality that can at times be most disagreeable.

An endless stream of thoughts speed through your mind at such a great speed that you need a notebook to catch the most interesting and important ones.

Leading a double life is second nature, because you know that the real you is a person that most people would not like.

Speaking is like a second language.

You are fluent in five languages, but not much good at making small talk in any of them.

Your best friend has a nickname that begins with the words "Mad" or "Crazy" or "Mad Dog" or "Weird".

You have a nickname that begins with the words "Mad" or "Crazy" or "Mad Dog" or "Weird".

Your best friend has a genetic syndrome.

You have a genetic syndrome.

You were born with physical features suggestive of a genetic syndrome - a Hapsburg lip, webbed toes, an extra digit, an oddly-shaped head, a part of your body that did not complete its development, or other things that were noted by the pediatrician at birth.

You were born with one or more physical features suggestive of unusual levels of testosterone during your prenatal development - a very low 2D:4D finger ratio, prominent canine teeth, a very wide face, a brow ridge that you could rest a coffee mug on, or other things.

They told you that you didn’t get the job because you didn’t smile enough.

People feel compelled to make jokes and comments about your body language, even complete strangers.

At times your childhood bore an uncanny resemblance to a scene from the movie Village of the Damned

You're the only student at the school for the intellectually advanced who talks like Sylvester Stallone.

You find there’s nothing more enjoyable and relaxing than plucking a few hairs and reading a few books in the evening.

You look a bit like a hunch-back, or like a person who has had their spine replaced with a curtain rod.

You feel that your innate purpose in life is to disseminate correct information.

Your all-time favourite book is an encyclopaedia.

In your home there is a lounge-style rocking chair for use in winter, and a traditional wooden rocking chair for use during the warmer seasons, and you live alone.

You think the reason why you talk to yourself so much is that “If I want to have an intelligent conversation in this place I have to talk to myself”.

You’re the kind of person that people think twice about hugging, and then they usually decide it’s safest not to.

You like to read reams of computer product documentation and mechanics workshop manuals, just for the thrill of it.

Your sensory sensitivity and hair-trigger gag reflex make visits to the dentist a difficult experience.

You’re the brainiest kid in the school and your behaviour in class is good, but at home your parents can’t get you to stop jumping all over the furniture.

You are puzzled when scientists claim that humans are a diurnal species, because for as long as you can remember you have preferred a semi-nocturnal lifestyle.

You remember the day when you discovered that it is possible, and indeed more comfortable, to walk on your feet rather than on your toes, and you were astonished when you then noticed that everyone else had apparently figured this out before you did.

You neither give nor seek advice about fashion nor choice of clothing.

You suffer from "fashionblindness".

You're pushing forty and you wonder when you are going to grow up.

Your Mum followed the advice in her baby-care manual "Keep introducing new foods to baby, and in time baby will learn to enjoy new flavours", but ten years later your Mum is still wondering when you will start to enjoy new flavours.

You like to talk about computer games with your little friend, who is also your grandchild.

You swear, shriek or make some kind of exclamation whenever you are driven over a speed hump in a motor vehicle.

Your own offspring tease you when you are being a humourless and pedantic old fart.

You have no idea who Brad or Angelina or Jennifer are, but you could give a detailed lecture about the lives of some obscure historical figures.

You get so excited about having a new idea for a computer simulation that you run to your Mum and blabber on about the technical details then flap about like a chook while pulling a weird face and poking out your tongue, and your Mum is not startled because you do this kind of thing all the time.

You resolve to never, ever read a particular book when you find out that the book is heavily promoted and is hugely popular all around the world, because you are naturally suspicious of any fad or idea that the crowd embraces and celebrates.

You say goodbye to your husband in the morning as he goes off to work, and your heart leaps with joy at the prospect of spending the day home alone in an empty house.

What you don’t know about your favourite subject just isn’t worth knowing, and some of what you do know about your favourite subject of study also isn’t really worth knowing.

You listen to Barbra Streisand singing "People who need people are the luckiest people in the world" and you think "Those lyrics make no logical sense at all!"

You never wink back, winking just ain’t your style.

You often get yourself worked up into a lather, not in the bath, but in conversation.

The weather outside is overcast with a temperature neither warm nor cool, and you think “Oh what a glorious, perfect day!”

You have formulated your own conservative but comfortable dress code, wearing an identical outfit most days from underwear to shoes, and there are only four colours amongst all of the clothes in your wardrobe.

You can hear the high-pitched sound of someone’s television set operating, from the street in front of their house, but you often don’t hear your wife’s voice when she is trying to get your attention.

You sometimes take delight in embarrassing your most socially oriented child by dancing and singing when a funky tune is played on the P.A. system at your local supermarket.

You have to hold your breath while walking down the supermarket aisle with toilet bowl deodorizers, or else you might vomit from the stench of the intolerable “fragrances”, and walking down the pet food aisle is completely out of the question.

Your idea of absolute flaming hell is being in a crowded shopping centre supermarket at 4pm on a Saturday afternoon, just before Christmas and just after they have re-arranged all the aisles, and loud, distorted music and annoying spruiking are blaring over the PA system, and great, huge overweight women accompanied by their overweight eldest daughters are blocking the way in every aisle, and little kids are playing chasie everywhere, and you catch a disgusting whiff of the smell-trail of an alcoholic shopper who hasn't washed in over a month, and in every checkout line there's a toddler throwing a tantrum (OH, THE HUMANITY!)

That’s you muttering “Fuckoffthelottayas” or “Please, please go away” under your breath while you are weaving your way past the other shoppers in the supermarket aisles.

When your local supermarket opened a “fresh” fish section you never shopped there again.

That's you having a good sniff of the durians in the Fruit and Veg section of the Coles supermarket, even though you have no intention of purchasing any.

You entered the supermarket with a friend, and when you get to the checkout you realise that you can't remember when it was that you last saw your friend.

You're proud of your ability to say "Good thanks" in a suitably perky, friendly voice when the checkout lady asks "How are you today?", but you hope that is where the conversation will end because you're no good at small talk and can't understand a lot of what people say due to auditory processing deficits.

The checkout lady jokes about the way you buy exactly the same food and household products all the time.

By the time you get out of the checkout you have developed a tremor and you feel totally drained.

You wear exactly the same brand and colour of underwear every day, and if you need to restock, and the department store does not stock the exact same undies, you get most annoyed and complain to the store manager.

You can't ever force yourself to buy a pointless barbie doll or action-man figure as a gift for a child, instead you always end up buying children science toys, factual books, spinning tops or things that fly for presents.

The shop assistant starts filling in a stress-leave application form, in shaky handwriting, as soon as you leave the store.

In manner and personality you resemble one of those eccentric characters played by Johnny Depp in movies directed by Tim Burton.

You notice that organisations create codes of conduct not long after you join.

You write personal letters that have lists of perfectly accurate references to published scientific papers at the end of them.

You could be described as a weirdo or an eccentric, but you aren’t insane.

You know you are eligible to join Mensa, but you never bother to take out a membership because you have little time for social clubs.

You enjoy an entertaining afternoon in a small museum, and you were there the entire time that it was open, and you were the only visitor.

Your mum tells you to behave like a nice little girl and stop bashing the crap out of your big brother.

The most enjoyable part of going out visiting with Mum, Dad and siblings is being rocked to sleep by the motion of the moving car during the journey home.

You believe you don't have any true friends, but you have a chat sometimes with the strangest guys in the neighbourhood.

You have no inkling that some people regard your life as a tragedy.

You find rare plants, Asian military history, law enforcement technology or navigational aids pretty darned exciting.

There seems to be a gene for outrageousness running in your family, and you definitely inherited it.

People who know you think "Oh God! This will take at least an hour. Where's a comfy chair?" when they answer the phone and recognise your voice.

You know that it is obviously true that the letter T is dark blue and it is more fun to move about than to sit still.

You get thrown out of places for the silliest of reasons.

You fantasize about being a member of the Addams family, because you think you could fit in quite well with that clan.

Mr Spock is your favourite Star Trek character but you think Captain Kirk is a pompous twit, and you can’t help admiring Sherlock Holmes’ intelligence, cool rationality and attention to detail, while you find his mate Watson to be just a silly old duffer.

You don't know how to properly pronounce a substantial proportion of the words in your vocabulary, because you get new words from books, not people.

You look like a rapper or the lead singer of a heavy metal band when you do body language, and that isn’t really a good look for a grandmother to have.

You walk into a roadhouse diner and order two slices of dry white toast and a coke for dinner, and two roast chickens for your mate with the weight problem.

You sometimes wonder how you ever got to be stranded on Planet Dumb@#$*.

Doctors prescribe anti-psychotic drugs for you even though you aren't psychotic.

They say you smile too much at funerals and you don’t smile enough at parties.

You’re not sure what people mean when they say a person lacks social skills, but you consider physical ugliness to be a devastating disability.

You wish certain inanimate objects would stop playing with your emotions.

You go to a party and all around you there are people chatting, flirting, gossiping, introducing themselves, making jokes, laughing, getting drunk, taking drugs, dancing and helping in the kitchen, and you think to yourself “There’s never anything to do at parties. I hate parties!”

You care passionately about matters of logic, and you could give a lengthy and cogent argument explaining why that is not a contradiction.

You’re unpopular and some people say you’re mad.

Your favourite cartoon character isn’t Bugs Bunny, Mickey Mouse or any of the Simpsons, it’s Daria.

Whenever you visit a museum you explain all the fascinating things to your companions like you are a museum guide on speed, and if you should visit the museum alone you might even be tempted to do your spiel to complete strangers.

You don’t understand why people buy teddy bears. What use is a teddy bear? What do you do with them? What can you make out of them? There are shops that sell nothing but teddy bears? WHO BUYS THESE THINGS? Why did God create teddy bears? Why can’t people give kids real toys? Teddy bears; you just don’t get it!

You hear that Diana the ex-princess has been killed in a car accident and you think "Dumb bimbo not wearing a seat-belt, drunk driver, shit happens, why all the fuss?"

Your wife hears the thudding sound of you kicking the outside of the house with your steel-capped boots, and she thinks “My dear husband is having one of those trying moments”.

You always identify with the loner character in movies and TV shows.

You are repulsed by odours that most people can’t detect, and you are irritated by sounds that most people can’t hear.

You are a peridromophile, a claustrophile, and also a synaesthete, or even know what any of these words mean.

Your friend realized that you were seriously ill when there weren’t any of the usual arguments or impassioned monologues, and you barely managed to make a mild complaint about the standard of hospital care.

You show a lot of respect for your own and other people’s property, but you don’t show much respect at all for your superiors.

You look at a crowd of people and you think “They all have unique names and unique faces, but they are all so alike in the way they behave, like they’ve all rolled off the same assembly line.”

You can easily tell if a fragrance has had it’s intensity boosted by the addition of some horrible aldehyde chemical.

A stranger comes up to you and asks if you have a watch, and you reply “Yes” and go on your way, wondering why they asked such an odd question.

You don't understand why everyone thinks "normal" and "sane" are the same thing.

The Great Victoria Desert, the Simpson Desert, the Nullarbor Plain and the Gibson Desert are some of your favourite holiday destinations.

You hear a politician say something on TV that you disagree with, and you tell him he is a $%#@head and a lying snake and you are going to go to Canberra to sort him out, and your wife reminds you "Darling, he is only on TV, he can't hear you".

You are concerned that your child is nearly 8 and he doesn’t have any level of expertise in any particular subject, and you wonder if he is a bit behind in his development.

You advise your kids to "Stop wasting your time reading nonsense fictional books, and sit down and read a few encyclopaedia volumes and LEARN SOMETHING".

Brown-nosing, bullshitting and schmoozing are some workplace skills that you have never been able to master, to your great disadvantage.

You shriek more often than most people do.

You are a baby and your favourite toy is your own pram.

You would be very proud if your kids grew up to be technicians, engineers, scientists, philosophers or academics, but if they made a career in sport or fashion modelling, that would really break your heart.

You know what joy and excitement a really good obsession can bring.

You have such an odd style of conversation that you would fail the Turing Test if you weren’t obviously human.

The sound of plastic packaging crackling can transform you from a calm, rational, law-abiding citizen into a snarling ball of fury.

You always seem to be any age but your real chronological age; when you were 6 they called you "The little professor", in your teenage years someone called you a "young fogey", and now that you are 60 they call you "The old boy".

In any situation in which there is the possibility that you will forget something, the most likely outcome is that you will forget it.

You often have moments in which you look around the crowd and notice that no one else is doing what you are doing.

You go to a meeting and make a brief comment and everyone laughs, but you never intended to make a joke.

You are at the beach and your swimming companion gets knocked over by a big wave, and you give him your estimate of how many tonnes of water just hit him.

You're the only person in the room who stops to sniff the roses in the vase.

You spot errors in design, logic, spelling, procedure, grammar and punctuation everywhere, every day, and you wonder why so many stupid people have jobs, while no one will hire you.

You sometimes talk like a cave man, leaving whole syllables out of some words, while at other times you talk a bit like that pedantic, uppity gold-coloured robot in the “Star Wars” movies.

You collect so many items inside your home that there is barely enough room to rock a chair in there.

Your children prefer your detailed and precise definitions of things rather than the ones in dictionaries or encyclopaedias.

You cut the nylon lace trimming off your clothes to make them less like instruments of torture and more like something that you can wear.

If you donated sperm that would be a very naughty practical joke, maybe even grounds for a lawsuit.

You’re living in a world of your own, AND A DAMN FINE WORLD IT IS!

Copyright Lili Marlene 2005, 2006, 2007, 2010.

Wednesday, December 13, 2006

Neurotypical Disorder - What would things be like if autistics were the majority and neurotypical people were a small minority?


Neurotypical Disorder (NTD) is a neurologically-based disability commonly affecting individuals who are not on the autistic spectrum. Many theories have been put forward to explain the bizarre behaviours and beliefs of people with NTD. The complex cognitive and emotional difficulties of NTD patients cannot be adequately described in a document of this size, but I would like to propose a model of a triad of impairments; Interpersonal Compulsion (IC), egocentricity and an impaired Theory of Minds (TOMs), in addition to the Delusion of Understanding (DOU), to explain the disordered personalities of patients with NTD.

Sufferers of NTD compulsively seek interpersonal experiences in the form of social events or casual meetings, in fact any contact with another human being is seen by the neurotypical patient as an opportunity for creating an interpersonal emotional experience. The drive to satisfy their emotional needs pervades every aspect of their lives. Simple telephone messages or financial transactions with supermarket cashiers are hijacked to meet this social compulsion. IC impairs the NTD sufferer's ability to live independently and maintain employment, as IC commonly causes NTD patients to waste time during working hours gossiping, joking and chatting instead of productive activity. IC can also impair the NTD patient's ability to maintain personal relationships as they may become depressed or resentful if their voracious emotional needs are not met by spouses, family and friends. NTD patients may even turn to their own children to satisfy their emotional needs.

The obsession with being a part of social groups that is commonly observed in NTD patients can leave sufferers tragically vulnerable to peer-group pressure and commercial advertising that exploits social psychology. NTD sufferers often demean themselves by manifesting deceptive behaviour and flattery in desperate attempts to establish and maintain personal relationships. This abnormally intense drive to fit in and please others is thought to be the cause of a tragic underdevelopment of logical thinking skills that is commonly found in neurotypicals. They spend so much time in their formative years considering which are the most socially correct solutions to everyday problems that the ability to think in a purely objective mode can become atrophied.

The egocentric nature of neurotypical individuals can be observed in their insistence that all people who they meet act in an engaging and attentive manner towards them. NTD sufferers can become angry or resentful when others are not as socially oriented as they themselves are. This insistence on sameness and conformity is possibly another manifestation of neurotypical egocentricity.

Neurotypical individuals display Theory of Minds deficits. NTD sufferers are often unable to abstractly theorise that others have intellectual capacity, emotions or humanity; instead these NTD patients rely on non-verbal and verbal expressive displays and performances by others as the sole basis of their beliefs about the internal world of others. Many NTD sufferers are unable to recognise the humanity of others who do not constantly share or demonstrate social/emotional characteristics.

In NTD cases in which there is some preservation of the ability to theorize that others have unexpressed feelings and private beliefs this ability is seriously limited, leading to delusional beliefs about others, the most insidious one being the Delusion of Understanding. NTD sufferers often assume that all other people are of the same psychological type as themselves, and when confronted with evidence that some others behave in a way that is markedly different to their own behaviour, neurotypical individuals invariably characterise these others as recalcitrant, defective or disordered examples of their own type, rather than of a different type than their own. These Theory of Minds deficits appear to be the basis for serious limitations of the social imagination of NTD sufferers, as these patients are unable to envision the psychology of those who are not neurotypical, leading to a marked inflexibility of thinking in the area of psychology. An overconfidence in their limited ability to understand the psychology of others is a defining characteristic of NTD. This lack of personal awareness of their own limitations leads to even more complicated misunderstanding in the form of the Delusion of Understanding (DOU). In particularly florid case presentations of DOU the NTD patient may express the conviction that they can “read the mind” or “feel the feelings” of other people. An inability to distinguish between the literal and metaphorical interpretations of these phrases may be found in patients who have DOU. It may be worth considering a prescription for anti-psychotic medications in these situations. As one might expect, the NTD sufferer’s negative and sometimes delusional beliefs about others can be a serious impairment in their ability to function socially with others, especially non-neurotypical people.

Egocentricity, Interpersonal Compulsion and Theory of Minds deficits account for the neurotypical patient's needs for constant reassurance and social interaction. These needs constitute a considerable drain on the resources of family members and the wider community.

Other mental disorders found to be comorbid with NTD include depression, anxiety and alcoholism. Alcoholism in this population has a 5.5% prevalence rate, based on US data, which is more than one person in 20. It is estimated that around 20% or 1 in 5 of adult females who have NTD will also suffer from clinical depression at some time in their lives (based on US data). Psychosis is a not uncommon occurrence within the NTD population, but the exact rate is unknown. Clearly this is a dangerous cluster of psychopathology.

While effective therapies exist for the comorbidities commonly found with NTD, there is no clear professional consensus or body of scientific evidence supporting any therapy, behavioural intervention, medication or cure for NTD. Long-term Isolation Therapy, in the form of compulsory physical and communicative isolation from others for a substantial part of the day, administered in a residential facility, is thought to offer the neurotypical child the best chance that they have to develop the ability to think for themselves. Early identification of this disorder with early intervention is the key to success. NTD is a highly heritable disease. If both natural parents have an NTD diagnosis, the odds are overwhelmingly high that all of their offspring will also suffer from the disorder. Currently the best hope for the future lies in the availability of Preimplantation Genetic Diagnosis (PGD) to screen out embryos that carry the NTD genetic defect.

Associate Professor Lili Marlene
Department of Pseudopsychology
University of Central Suburbia
Southern Aspergalia

Copyright Lili Marlene 2004, 2005, 2006.