More bloviating by discredited Dr Wakefield

Outbreaks of  fully-preventable diseases are increasing

As reported on Thursday, April 11th in the UK paper The Independent, Swansea measles outbreak: Confirmed cases rise to nearly 700″, which is worse than than last year’s outbreak in Merseyside, England.

Over 2,600 MMR vaccines were given last week, but are still insufficient to counteract the number of unvaccinated people, or those who lack the full number of necessary dosages. Public health officials explained that the outbreak will continue to grow. (This is what is meant by “herd immunity”: there needs to be a sufficient percentage of people who are immune to prevent the spread of infection.)

And as the article reminds us,

Before the introduction of the MMR jab in 1988, about half a million children caught measles each year in the UK. Approximately 100 of those died.

But for reasons I don’t understand, Andrew Wakefield (who apparently suffers from ‘Center of Attention Deficit Disorder’*), was not just mentioned as a historical reference, due to being a pivotal figure in the paranoia that led to the drastic drop in immunisations. The front page of The Independent’s online edition for Saturday, 13 April 2013, has in its top, featured article a large photograph of him, Struck off MMR scare doctor: Welsh measles outbreak proves I was right. What in the world for?!

Why the concern over Wakefield’s opinions being published, with a newspaper’s front-page lead?

Andrew Wakefield should not be a featured person of interest for opinions. He is no longer a licensed doctor in either the UK or the US. In 2011, Medscape designated him “Worst Physician of the Year” and in 2012, Time listed him in, “Great Science Frauds”.  There is also a good editorial in the same edition of The Independent“Andrew Wakefield’s baleful legacy”.

Wakefield’s unprofessional behavior as a researcher and false assertions that MMR vaccines can lead to autism (in a 1998 article in The Lancet, later withdrawn by the journal) are  a bunch of frass (insect dung). Plus, his ongoing media attention and involvement with what initially were fringe groups, inflated such ‘antivax’ sentiments to mainstream popularity.

Vaccination rates dropped drastically, from 92% to as low as 50% in some areas. Measles outbreaks began occurring across Britain, and in 2006 for the first time in 14 years, someone died of this preventable disease.

(Similar outbreaks happened in the US as well, including mumps. In 2006 got an MMR vaccine then because I had never had mumps, nor been vaccinated for it. Even if I had, the old killed-virus mumps vaccine used when I was a child was found to be ineffective.)

Included in The Independent’s series of articles is the useful, “Timeline: How the MMR scare story spread”  by Jeremy Laurance.

The feature article: the good, the bad, and the problematic

The front-page feature by Jeremy Laurance is titled, “Struck off MMR scare doctor: Welsh measles outbreak proves I was right”. Which of course, is not true; Wakefield is just bloviating again**. As the front-page subhead reads, “Experts condemn discredited doctor’s outburst pinning the blame for the outbreak of measles in Wales on the Government as cases in the Swansea area rises”.

The linked article posted in the Health News section has a different title, “MMR scare doctor Andrew Wakefield breaks his silence: Measles outbreak in Wales proves I was right” (subhead: “As measles cases rise, experts condemn Wakefield’s outburst”), which begins with with six paragraphs of current events, then describes Wakefield’s assertions in the next eight paragraphs.

BUT, the factual counterpoints to the nonsense, clearly stated by, Adam Finn, paediatrics professor at University of Bristol, and childhood vaccines expert, are not given until afterwords, in the next nine paragraphs of the article.

Unfortunately, not everyone is going to read that far, nor stop to digest the complete refutation of all the idiocy that Wakefield said.

I think Finn’s factual material would have been more useful if presented earlier, such as a point-by-point dismissal of nonsense, e.g. ‘Wakefield claims … but Professor Flinn refutes …’

Alas, perhaps due to following the common news formula of, So-where’s-he-working-now, included this last paragraph, which unfortunately lends him what some might perceive as professional credibility:

“Dr Wakefield moved to Texas, US, in 2001 where he is director of Medical Interventions for Autism and in January was promoting a reality TV series on autism.”

Remember, Andrew Wakefield uses the title “Doctor” because he earned a degree in medicine; he is not licensed to practice medicine in either the UK or the US.

As I said, Wakefield should remain a historical warning, rather than a featured person of interest for opinions. Adding on the reasons why his comments are harmful nonsense at the end of an article are not enough to detract from the fact that all this frass is featured for free!

_____

* I didn’t make up the (fictional) COADD — ‘Center of Attention Deficit Disorder’, but I sure see a lot of it in our problem students (as opposed to the students with problems, who generally want to avoid being in class).

** Bloviating: a lesser-known, but useful addition to one’s vocabulary: to speak boastingly, pompously, aimlessly; as the OED says, “talk at length, especially in an inflated or empty way”

Reasoning for a good cause

“Same thing,” she said, waving off the comment and walking off toward the time-clock to punch out.

“But– no, it’s not …” I protested, and then stopped talking as I saw her leaving not only the the doorway where I stood, but our conversation as well.

If you could call it a conversation; I’ve had longer dialogs with fellow elevator riders.

It was hard to stop my rebuttal. I so wanted to explain, and having to force myself to stop in mid-sentence (hell, mid-mini-monologue) is hardly my style. But I diligently keep practicing social skills, including noticing when others have quit a topic.

Having already clocked out, I gave up, left the building, and even waited to get into my car before expressing my complaints aloud to no one — except a fruit fly uselessly orbiting the fragrant-but-empty lunch bag I had just tossed onto the floor.

And a fruit fly doesn’t give a gnat’s ass about the seemingly subtle difference between reason and cause. No, it is not mere semantics, and they are not exact synonyms.

“So how was your trip?” she had asked as we met in the hallway. We had not yet crossed paths that day, delaying the obligatory Monday morning chit-chat.

“Oh it was lovely, except for missing a connecting flight, so I was only there two days,” I began. And I was proud that I had even mindfully planned ahead to next ask her if she’d ever been to Boston, thus fulfilling my offering volley in the chit-chat process — when she gave me that totally unexpected, inexplicable response:

“Well you know, ‘Everything happens for a Reason’ !” She chirped, nodding sagely.

“You mean a cause,” I began.

“Same thing,” she said, waving off the comment and walking off toward the time-clock to punch out.

“But– no, it’s not …” I protested.* Read the rest of this entry »

I meant to get around to this earlier…

Displacement behaviour: when suddenly you feel the need to shift a negative emotion or stressor to doing something else. Right now, that means sorting tax papers instead of finishing a class handout or sending out a query letter. (During Finals Week, my displacement behaviour was cleaning the bathrooms. My apartment was REALLY CLEAN after Finals Week.)

One rationalisation I have at the moment is that I am correcting for last year’s “planning fallacy” — organising and tracking down information and figuring out the electronic filing of my federal and state taxes took me longer than I had anticipated. (Folks with ADHD are terrible about planning fallacies, because of the weird fluidity of perceived time.)

Ooh, I just found some neat links on new research into the causes and coping strategies for procrastination … *

STOP!  

That’s just a rationalisation. Set aside those tax papers for this weekend, and get back to the correspondence. Damn. And, *sigh*.

Meanwhile, here are some of my mottos that you may like:

Fidget quietly.

Pile by file**.

Perseverate positively.

Obsess functionally.

_____________

* Go to the Wikipedia page on Procrastination; they’re at the bottom. Sorry; I can’t be an accomplice to all of us wasting too much time…

** Which of course, later turns into File by Pile. But if your piles are already rough-sorted, then they don’t need much more than sifting out unnecessary junk (credit card offers and candy wrappers and expired sticky-notes), and maybe some date-sorting.

I prefer the OHIO method for when I get the mail: Only Handle It Once. From the moment it goes from the mailbox to my hand, I don’t dare set it down until I have binned the junk, set the catalogs and magazines in the appropriate reading zone (e.g. the bathroom), and push-pinned the bills to my bulletin board with the due dates highlighted. Otherwise, if I put the stuff down, it gets lost and forgotten in the dèbris of my desk!

Science Rules!

One of my favorite blogs has another great one:

http://thisisindexed.com/2011/02/damn-science/

Stupid Irony!

Someone defined poetry as “life condensed”.  Sometimes I think that disability is life magnified.  Today’s lens is Irony:

  • I dropped my reaching tool behind the bed where I … struggled to reach it.
  • Forgot to take my ADHD meds.
  • Was too stiff to pull on my elastics:  the wrap for my elbow, the two pads for my knees, and the fingertip-less gloves.
  • Nearly in too much pain to remove the child-safe cap from the arthritis medicine.
  • Couldn’t see to find the wee screw that holds in the lens to my eyeglasses.
  • (Similarly,  when my ex-husband couldn’t hear his hearing aid squealing.)
  • Couldn’t understand the voice-mail reminding me of a follow-up visit with the audiologist.
  • Being unsure if that noise I heard in the audiologist’s testing booth was one of the test tones, or my tinnitus.
  • Asked a random store clerk to open the box and unpeel a bandage wrapper so I could stop the bleeding of yet another torn cuticle and pay for said bandages.
  • Sat on the grocery floor because I’d forgotten to wear my knee pads that day, and had to stock boxes of aspirin and arthritis meds.
  • When discussing my difficulties with social interactions with a counselor and mentioned that I thought I was missing things, I was unable to tell just what it was that I was not catching!

And so on, and so on.  Feel free to add some of your own!

What you want

I still feel queasy when I remember the words.

Children have a certain disempowerment simply because they are young — they are naïve, less learned, and lack perspective. But this transcended childhood.  It sank past the boundaries of adult to child, or parent to child, and trampled my self-identity and self-determination.

My mom had found a way to get past what some would have called the “fortress” that isolated me, that natural preoccupation with whatever I was doing and naïve self-centeredness, that self-ism or autism that was greater in me than most anyone else.

“Oh, you don’t want to get grilled cheese again!” she chided me, but her sharp glance to me denied the lightness in her tone.  Her expression would then change, as it so often did when she spoke to other adults, with the swiftness of flipping a social light-switch, and she turned to pleasantly address the waitress “She wants the ham sandwich.”

Or: “You don’t either, have a headache.  You’re just fine.  Now go get your work done.”

And in 9th grade, in a dizzying double-bind: “You don’t want to be a park ranger; quit flapping that survey!  You’re going to sign up for bookkeeping and typing, and you’re going to start getting good grades in math class, too.”

Increasingly, I was told how I “really” felt emotionally or physically, or told me that I could not possibly be feeling something, that indeed I actually was feeling.  Invalidation is when an emotionally abusive person distorts someone’s perception of the world, or when the abuser undermines their factual processing by casting doubt upon the facts of the events.  Denying what happened or the analysis of what happened, minimizing the importance of abusive statements or trivializing the recipient’s responses are also means of invalidation.

Over the years, my inertia increased.   I could never tell when I was expected to have a preference, or rather, to just to express a preference, since apparently I wasn’t really allowed to have them.  When it wasn’t convenient to others for me to express a preference (to speed up shopping, or to allow my mom to appear generous), I was soundly rebuked and told what I “really wanted”.

My stress and depression increased throughout my teen years.  When I should have been learning independence and skills and decision-making, I was thwarted, and then paradoxically, received further insults because of my lack of independence.  Never knowing when I was supposed to express an opinion, or what my opinion was “supposed” to be, I frequently gave up and just shrugged, unable to verbally express the “appropriate response”. I frequently did not know what that “appropriate response” was.

Worse, with my lack of being able to perceive all those subtle social cues that pervaded both my warped home environment, and even the subtle social cues that comprise such an overwhelming part of interactions in the “normal” world, I was becoming increasingly fatigued with the burden of shamefully lacking in whatever psychic means would have informed me.  It was of course, all my fault, as so many people were quickly willing to inform me.

My mom had found a way to get past my natural self-centeredness, not by inviting me to understand others’ worlds, but by trampling my personal boundaries of selfhood.  Although children have a certain disempowerment simply because they are young, they, like all self-conscious organisms, are entitled to — nay, required — that their selfhood be respected.  Denying that someone else might have opinions worth considering, much less that they are even allowed to even have opinions, violates that central inalienable right.

~#~

Years later as an adult, I was still running into much the same problem of “reality shifting” (being told by others what my personal reality and preferences were “supposed” to be), even if it wasn’t expressed as blatantly or as frequently.  One such event became (in retrospect) a tipping point — not in events, but in perceptual clarity.  I finally realized that such events were equally disrespectful, even if they lacked the overt denial and double-binds.

My (now ex-) husband was telling me that I shouldn’t want to do jury duty because it might interfere with my vacation schedule or my work schedule.  I shouldn’t want to do jury duty because it didn’t pay as much as my job did.

But I realised in confusion, that this wasn’t about what I wanted to do, to participate as a citizen, to help make a positive difference in justice, and to be able to observe another facet of social functioning.

Ostensibly, it was about what he wanted from me, in terms of convenience in the family schedule, and what he wanted from me in terms of my earnings. (Unbeknownst to me at the time, we were horribly, deeply in debt.)  I wasn’t denying that it could make these differences in scheduling and earnings — but really, that wasn’t the issue here.  Those “reasons” were just distractors.

Rather, he was trying to enforce my actions based upon his wants, and dismissing my wants as being unimportant.  He was trying to convince me that his wants were my wants.  We all have wants, but I didn’t think that mine should have been dismissed as being unimportant.

The solutions he proposed were ones compromises between the requirements of the law, and what he said I wanted.  But effectively, I was the one being compromised, because his announcement denied my interests and enabled him to get what he wanted, rather than what would have enabled both of us.

I got tired of being told what I should want. I got tired of being told how I should feel.  I was suffering from a chronic case of spiritual fatigue. Constantly negotiating to be taken seriously was an exhausting way to live.

I don’t miss those aspects of my life; my whole system twitches when I perceive someone telling me what I “should be feeling” or “really want to do”.

Now if only I could get out of some of these other double binds that infest my work life …

The long and short of it

It’s going to be a long day; I can tell already.

Last night I finally got eight hours of sleep, aside from several prolonged coughing fits.  The previous three nights I’d only gotten four hours of sleep.  You’d think the extra rest would make me feel better, but I’m still running short on good sleep because I have this bronchitis or whatever (we’re waiting on the lab results from the nasal swab to see if I have Pertussis, holy shit).

At least I only have to work one job today.  But I’m teaching an evening class and I suspect that by then some of my cognitive functions will be running on Reserve Power.  At least it’s a subject I’ve done several times before, so I can get by with using a lot of verbal scripts.

It’s going to be a long day; I can tell already.  That’s because I’m already running into “System Overload: Error Messages”.

P.S.  I’m going to have a bowl of Mint-Chip ice cream and see if that doesn’t do anything for me, since the efficacy of Häagen Dazs Vanilla Swiss Almond ice cream isn’t up to par. Thanks, Bev!

[now clink on this link for System Overload: Error Messages where post continues]

Weather’s here, wish you were fine

Summer sucks.  I hate the heat, the humidity, the sizzling sun boring into my head, unpeeling my limbs from each other, the restless nights spent searching futilely for a cool spot on the sheets and being sleepless for the lack of the comforting weight of blankets, the lack of appetite, the omnipresent glare, the complete lack of energy … it’s depressing, and won’t get better until fall weather arrives in late September.  I don’t even have the respite of an alpine vacation to look forward to.

Raynaud’s is weird; my toes and thumbs can still go numb, even when I’m hot.  WTF?!

Plus, now I have a head cold, the whole sniffly-scratchy throat-more aches-feel crappy routine.

“How can you have a cold?” asked my coworker yesterday, “It’s summer!”

“Back in the 20th century, they discovered that cold are caused by viruses, not by cold weather,” I sniffed.  (OMG, now I’m officially Old, I’m saying, “back in the 20th century”.)

“I’m just kidding,” he grinned.

Oh, right.  I realised that about the time he said it.  Nothing new there, either.  (File under: Aspergers, misses jokes.)

My sunglasses broke.  Things around the house keep breaking (kitchen drawer track, drawer pull, cabinet front, bathroom ceiling paint, tub’s chipped, towel rack needs to be masticked back on, kitchen needs painting, bedroom needs painting, kitchen flooring’s gouged, back patio’s settling, double pane-windows are fogged up, ad nauseam).  And the thermostat is broken and won’t set the air conditioning below 83°F.

The cats keep fighting.  My son can’t find a job.  And my daughter is nine months pregnant and belly-aching, as is every pregnant woman’s right.  But the house is hot and none of us are sleeping well.

::bleh::

But, a good distraction is the latest Circus of the Spineless, over at Bug Girl’s blog!

“All we want are the facts, ma’am.”

Sergeant Joe Friday of the old American cop show, Dragnet, was famous for asking witnesses — in characteristic deadpan delivery, “All we want are the facts, ma’am.”

Sounds good to me.  Not just facts (albeit they’re tremendously useful, especially when you have them in variety), but also the focus upon transmitting information, without a lot of accessory fluff.

“I don’t know how to put this,” my ex-husband would hedge.  He was always loathe to break negative news, and would put off doing so for long stretches of time before tiptoeing around the subject and throwing up paragraphs of waffling pseudonyms.

“Then just say it.  Spit it out already!”

Bluntness when it’s simply being straight-forward is not a social crime in my world.

Furthermore, I don’t go inventing insults where none are intended. Unless you are calling me (as some of my students with behavior disorders do) a “fucking bitch” or something equally blatant, I’m not going to assume that speaking plainly is meant to be an affront.

I will confess that (even into my late 40’s) I am still sorting out the reasons why people say the things they do:

  • There’s the “social noise” that is meant as non-confrontational space-time filler, to promote social ease in a sort of verbal grooming behavior or stress-displacement behavior.
  • There’s the exchange of opinions and veiled insults meant to establish or maintain odd social status arrangements. (I understand what those are, but I really don’t understand why they exist, aside from the practical necessities of organisational status for allocating responsibilities.)
  • There are the jokes, compliments, and stories meant to promote inclusion and establish group identity by creating a culture of common experiences, affirmation of values, and recognition of effort.
  • There’s the philosophical or creative exchange of ideas, including word play, humor, and problem solving.

Then there are the murkier forms of communication that I have trouble fathoming, even when I can (after a few minutes or days’ consideration), identify what is going on.  These include the more oblique types of flirting, the affective persuasion of political campaigning (including the sort that happens at work and other organisations), and other mysterious interchanges that involve even less emphasis on word choice, and more upon paraverbal and nonverbal delivery.  (“Paraverbal” is how the words are said, the inflections; “nonverbal” is the accompanying body language.)  I’m actually not sure what these are, but sometimes I can sense that something more is going on, and I’m not sure just what it is that I am missing.

At school, I spend all day surrounded by people who are constantly negotiating with each other to get what they want or feel they need at the moment (what in Functional Behavioral Analysis is described in the dichotomy of providing a means to Get/Obtain or Protest/Escape/Avoid).  A lot of the interpersonal transactions are fairly simple to understand, as most of the students lack subtlety.  At the garden center, the focus of my interactions revolve around the transmission of factual information, and the curious scripts of commerce that combine both “cheerful servant” and “autocratic cashier”.  The latter set is usually easier, and I’m even beginning to pick up on the “Thank you,” that really means, “I don’t need any more information now”.

But after interacting with people for twelve hours a day, I find that my brain turns to mush from the burdens of doing my physical jobs with focusing lots of working memory on perceiving, analysing, and replying to all the heavily-coded and loaded talktalktalk.

Sometimes I miss the simplicity of working in a lab, where one could spend their day simply transmitting facts.

Of course, I later found that even that was a misperception.  There was all the office politics going on just at the edge of my radar, and there was the inevitable problem of others assigning meanings to my para/nonverbals that I was not really intending to transmit, and there was the third problem of others being annoyed or dissappointed because I had not picked up on their para/nonverbals and thus missed a large chunk of what they “really meant”.

Life would be so much simpler if people would just mean what they say, and say what they mean!

Nicely Non-verbal

One of the things I like about garden center work is being able to help people select plants for their different needs, and discuss how to care for them.  There are few things more pleasant than being able to share information about one of your special interests with other enthused people.

But the other day there was a storm heading in, and customers at the garden center were few and far between.  Until it was time to put things away for the night, there wasn’t a whole lot of sales work to do.  So the other clerk and I contentedly tended the plants.

Free from the heavy cognitive demands of dealing with fractious students, or of trying to make chit-chat while running a cash register, I peacefully filled in the gaps on the benches with fresh stock, and groomed the plants by removing the old flowers and leaves.

My coworker was in another area watering the the endless flats of geraniums.  When I came by to empty my debris bucket, she commented that it was a nice break from the intensity of her other job as an interpreter.  “I like being able to just ‘veg out’ with the plants,” she sighed happily.

After a few seconds’ delay to shift back into conversational gear, I replied, “Yes!  It is nice to be non-verbal for a while.”  And then I went back to silently puttering around with plants.

Piques and Valleys

So, I’ve been rather absent from bloggery lately due to spending evenings sorting through vast boxes of paper archives, moving books, applying for jobs to keep a roof over our heads, or attempting to sleep off this virus. I now have removed a cubic meter of paperness from our house, and transferred a few hundred books from one room to another. I still have the virus (or maybe a second one, as our students have not the best hygiene), but not the second job.

(Now, if anyone is looking for an experienced secondary or college tutor or after-school care for special-needs children, let me know via andreasbuzzing care of my gmail account.)

But aside from all that, there have been some thought-provoking ups and downs in the news that I don’t want to let pass before they become “olds”:

In an brief article in the New York Times, researchers from the Albert Einstein College of Medicine studied some 11,000 third-grade students, and found that Read the rest of this entry »

Requesting your thoughts, please

Howdy folks,

This morning I’m again in pain and rather stiff.  I know that many of you have rather specialised knowledge, and would appreciate your thoughts on getting diagnostics.

I have a number of conditions, both common and uncommon, including Raynaud’s, migraines, cough-variant asthma, tinnitus & hyperacussis and Auditory Processing Disorder, motor tics, and assorted neurological glitches including prosopagnosia (face-blindness) and ADHD. Getting these things diagnosed over the past decade has been wonderfully helpful for those that can be medicated, figuring out how to make accommodations for those that can’t, and being able to prove to others that I have documented reasons for difficulties, and that I’m not being lazy or stupid.

However, the crux of this post is that I also have Read the rest of this entry »

Being remote / mis-emoting

“What’s the matter?”
“Nothing.”
“No, tell me.”
Nothing.
“Seriously, what’s wrong?”
“NOTHING’S wrong; I’m just working on this article.”
“Well you don’t have to be so rude.”
“I wasn’t — I’m just trying to work already.”

Apparently I don’t always “emote” (physically express my emotional state) the way people expect me to. Apparently my “thinking” face looks like a scowl.

“Are you annoyed with me?”
“No.  You’re fine.  I’m just thinking.”

(But if you keep bugging about why I am/not annoyed, I will probably become annoyed…)

Maybe I should research Read the rest of this entry »

Holding a cat

Random thought:

Holding a baby is good camouflage

for rocking while standing or sitting.

Cats are less useful.

Family Traditions

My daughter and son had a long conversation the other day.  They knew what they were talking about, within this twin-like patois built upon years of shared jokes.  It made sense to them, for all that anyone else would have found the banter of movie and TV quotes to be strings of non-sequitors.

“You know, the baby won’t learn how to talk if this is all it hears,” I jested, referring to my future grandchild. “The school will call and say, ‘We think your child is autistic; he just speaks in scripts’!”

I was mostly joking of course; conversing in “scripts” hasn’t prevented either of my kids from being able to speak.   Like in many families, sometimes the scripts imply whole paragraphs of dialog familiar to members.  They can serve as conversational shorthand or crutches to encode the meaningful transmission of information when someone is in a hurry, feeling ill, or just making a joke.

Like all the other forms of communication shorthand we use at home, it’s just one of those traditions that creates part of the family culture. (And what better way to hide things from mum than a secret kid argot?)

You Can’t

(These quotes are real, at least to the gist of what was told me.)

“You can’t — no, no whining!  You just sit here next to me and wait quietly for the doctor.  You are NOT going to bother people by grabbing all the magazines and lining them up on the floor.  Don’t even ask ‘why’ — I’m tired of all the Why’s.”

“Will you quit repeating things over and over. What the devil’s gotten into you?”

“Oh, just stop flapping about every time you’re upset!  Your baby sister doesn’t go around doing weird things like that!”

“Sit still, Andrea, no rocking.  We don’t do that in school.”

“Stop doing that!  You’re going to kill the grass, spinning around in circles like that.  Now come inside and quit making a spectacle of yourself.”

“What were you thinking, Read the rest of this entry »

You just don’t get it

A few summers ago, right in the middle of my graduate programme, I was hit with Mono and Lyme. Taking a shower was exhausting. I kept falling asleep in statistics classes, and in the lab where I tried to work. Putting thoughts together in any of my research analysis or writing, or even learning new concepts, was like stringing beads while wearing heavy ski mittens.

Even after submitting a letter from the doctor to my department head, he couldn’t understand why I couldn’t get things done, and when he did see me around, why I was staggering around and looking like “death warmed over”. He was of course, operating on the Willpower/ Mind Over Matter principle, where all one really needed was just More Determination. (And this was even in a biological science, where you’d think they would have some kind of clue!)

I got over the diseases. A couple of the most important things I learned from that whole experience were tied to Paula Kamen’s lovely book, All in my head: an epic quest to cure an unrelenting, totally unreasonable, and only slightly enlightening HEADACHE”. One important thought is: “There is a difference between getting cured and getting healed.” Another is: “Acceptance is not the same thing as resignation.”

I also got a crash course in how little empathy some people have in real life, compared to the words that come out of their mouths. Of course, it was hardly the first (or last) time I had experienced such in life, just an event when things were painted with such broad strokes.

Weird thing is, the official word is that autistics lack empathy.  That’s the line, but there are plenty of people who beg to differ.

In an NPR interview, Temple Grandin had this to say about empathy:

Normal people have an incredible lack of empathy. They have good emotional empathy, but they don’t have much empathy for the autistic kid who is screaming at the baseball game because he can’t stand the sensory overload. Or the autistic kid having a meltdown in the school cafeteria because there’s too much stimulation. I’m frustrated with the inability of normal people to have sensory empathy. They can’t seem to acknowledge these different realities because they’re so far away from their own experiences.

Unlike someone with Antisocial Personality Disorder (sociopathy) or Narcissistic Personality Disorder who truly does lack much real empathy, the autistic person does not really lack empathy. Rather, they do not respond in ways that demonstrate empathy in typically recognisable fashion. This is in contrast to those sociopaths, bullies and narcissists that may demonstrate a lot of the shallow social-noise that appears to be sympathetic, but on the deeper level is really more about manipulation to gain something for themselves, rather than true empathy.

Just because someone doesn’t respond in the expected manner, that does not mean they lack the feelings we associate with those responses.

The term “empathy” is one of those words that carries several meanings, and is used in different ways. This conflation of meaning results in things like this issue of the Asperger’s/autistic person being described as “lacking empathy”. Plenty of parents, spouses, other family members and close friends will assert that despite diagnostic criteria, their person “really is loving” and “shows empathy” and demonstrates both passion and compassion.

So what’s going on here with this definition, and in the person?  Things like: Read the rest of this entry »

With a price tag like that, you know it’s what’s best

Would you pay more for name-brand headache medicine than the generic or store brand?  If your budget is like mine, probably not; after all, the tablets are the same, it’s just the packaging that’s different.

But on the flip side, what if your favorite practitioner recommends an expensive treatment that will help you or your loved one recover from a chronic condition? Not surprisingly, treatments with higher price tags make patients feel better, even when there are not any differences in the treatments, nor even when the treatments are just placebos!  Per research by Waber et al., (“Commercial Features of Placebo and Therapeutic Efficacy”)

These results are consistent with described phenomena of commercial variables affecting quality expectations and expectations influencing therapeutic efficacy. Placebo responses to commercial features have many potential clinical implications. For example, they may help explain the popularity of high-cost medical therapies (eg, cyclooxygenase 2 inhibitors) over inexpensive, widely available alternatives (eg, over-the-counter nonsteroidal anti-inflammatory drugs) and why patients switching from branded medications may report that their generic equivalents are less effective.

In other words, patients perceive more expensive treatment as being more effective.  This is in many parts “research as confirmation of what we already know”, also known as “A Duh! Study”.  (Which is why it was in the 2008 Ig Nobel Awards.)  However, this preference for expensive treatments can also be a post-purchase rationalization, where we have the unconscious tendency to rationalize why the things we have paid for were such good choices.

Human beings are subject to a large number of cognitive fallacies and biases of judgment.  We unconsciously deceive ourselves in a number of ways, which is why scientists must use randomized, double-blinded, and repeatable studies with falsifiable hypotheses. (The word “falsifiable” is somewhat confusing or misleading; it simply means that the hypotheses can be proven wrong, which is statistically safer than trying to prove them correct.)

Our brains love to find patterns — that’s how we make sense of all the sensory input we’re bombarded with — but we will also see patterns even when they don’t exist.  Even the most earnestly objective researcher can misinterpret incomplete data, or give more attention to data that supports their hypothesis than that which doesn’t.  This is why double-blinded studies are important, so neither the study subjects nor the data gatherers know who is in the treatment or the control groups.

Naturally, shysters will take advantage of people by Read the rest of this entry »

The return of Rudolph

Because I’m up to my tuchis here getting ready to prepare the chicken tamales, baklava, mince tarts, potato latkes and whatnot, here’s a re-run of a holiday-oriented classic post (from 2006):

TODAY’S QUOTE:

“Nobody realizes that some people expend tremendous energy merely to be normal.”
~Albert Camus

There’s a newsclip kicking around the Web, from the CBS Evening News of February 23rd, 2006.  Normally I don’t pay attention to basketball.  Or baseball.  Or football.  Or hockeyball (joke).  This newsbite is different.  So different that CBS felt compelled to make a last-minute change in their programming plans to show this “incredibly powerful” story.

The newscaster explains, “Because he has been so devoted to the team, for the last game of the season, Coach Johnson actually decided to let Jason suit up – not to let him play necessarily, just to let him feel what it’s like to wear a jersey.”

And then near the end of the game the coach even lets him onto the court.  Finally getting to play in a game, rather than fetching water and toweling down sweaty team-mates, the basketball player made six three-point throws.  The crowd goes wild.

Gee, you’d think that a coach would want a player who could shoot like that to be on the court all the time …

View the newsclip now

The whole situation reminds me of how I felt every year when the “Rudolph the Red-Nosed Reindeer” animated Christmas show appeared on television. (links to show posted on YouTube; Rudolph introduced at 4:06.)  There was always something unsettling about the whole story of this reindeer with the glowing nose, and it wasn’t until late in my own high school years that I figured it out.

No one liked Rudolph because he was different.  In the beginning, his family tries to hide his nonconformity, covering up his nose with mud, but then Rudolph talks funny from the congestion.  Still, it is deemed better that Rudolph be perceived as talking funny, than for everyone to actually know the truth.  Eventually the disguise breaks down, and Rudolph’s glaring, glowing nose is revealed in the rough-and-tumble of playground mischief.  Everyone is horrified.  They always are when someone tries to “pass for normal” and is eventually outed.  People feel deceived, because the Other was not what they thought.

The reindeer games coach orders Rudolph away. So shunned, he leaves his North Pole village, joining up with another misfit, Herbie the elf, who wanted to be, oh horror, a dentist rather than a toy-maker.

A few years later there is a Christmas eve of such epically foggy proportions that Santa Claus cannot make his usual gift-giving rounds.  Santa realizes that he can still do so if Rudolph is allowed to lead.  Eventually everyone decides to tolerate the mutant reindeer, perhaps accept Rudolph a little bit, but only because he can be useful to them, lighting the way for Santa’s sleigh.  (Herbie gets to be a dentist, another occupation that is tolerable because it is useful to the others, rather than because Herbie has a passion for dental care.)

The program was made in the early 1960’s, coming off of the ultra-conformism of the 1950’s.  Everyone thought it was cute and sweet.  I couldn’t explain the intrinsic discomfort I felt as a child, not from viewing that particular show, or even in everyday life.  Nor could I explain why I identified so strongly with Rudolph or for that matter, the alien Spock from “Star Trek”.  When the neighbor girls compared me to the Professor from “Gilligan’s Island”, I couldn’t understand why that wouldn’t be a compliment – he was the only sensible one of the castaways!  But even the Professor, a quintessent geek (though thankfully neither of the foolish nor ugly duckling sort), was the odd one out.

The telethon poster child or “odd team-mate” is held up in the same way, but also held away at arm’s length, and Othered.  We’ll let him be on the team in an accessory manner because it makes us feel munificent, and because he might be exceptionally good at something we need.  (Were he merely mediocre, or even near or at the bottom of the list for overall skills, would he be on the team?)

But the mere fact that a team-mate is known more for being different than for any aptitude or acquired skill, and even the fact that stories about such people are circulated as ABSOLUTELY AMAZING! and exceptional shows that pity is still stronger than acceptance.

The problem with pity is that it creates division; it puts distance between people.

Pity prevents respect by implying inferiority; there is a humiliating lack of worth, because the person is defined by what they cannot do instead of what they can do.  Victims receive pity – but nobody wants to be a victim!

Pity is disempowering.  It does not decrease burdens by sharing resources and abilities. The people who see only the “broken” part are uncomfortable; that discomfort is a kind of Schadenfreude, a sense of relief that the bad thing (the disability) did not happen to you.

Pity is like magical thinking, where people want to give Fate some kind of token payment to avoid similar disaster from befalling them.

Pity is similar to both fear of the other, and to contempt for the Other; the Other must somehow have done something bad, and “deserved” their fate (as given to our social mores from the Puritan ethos).  Either way, it is dismissive of the person’s concerns, and denies their opinions, and their own personal view of reality.

Pity is not the same thing as compassion, where the other person is seen as being similar to one’s self, and is identified by who they are, is known for what they can do, and is accepted as being a worthwhile person to play with or work with, and to know and to love.

“Because he has been so devoted to the team, for the last game of the season, Coach Johnson actually decided to let Jason suit up – not to let him play necessarily, just to let him feel what it’s like to wear a jersey,” says the newscaster.

::BARF::

Meanwhile, too many people work endlessly hard at trying to “pass for normal”. The problem with pretending to be normal is that it gives power to the paradigm, to this concept of normalcy.  As long as the person is pretending to be whatever kind of average-normal they are not, they are devaluing themselves and allowing others to devalue them, and they are handing over their personal power to the realm of the imaginary Normal people.

Normal, average people are imaginary, because no-one is wholly average and normal.  However, the imaginary-normal people are a very real majority group.  They all pretend to be normal, and en masse they have majority power under that paradigm.

Wow, isn’t it absolutely amazing!  Autistics can play basketball.  Next thing you know, they’ll let Negroes or women play basketball …

Feh.

4 Stages You Don’t Have to Go Through

A recent article landed in my Google news aggregater, “Child’s Autism Diagnosis: 4 Stages You Will Go Through”.  Unfortunately, for all of its cheery helpfulness, it still manages to perpetuate some common stereotypes and misconceptions about disabilities:

When you hear that your child has been diagnosed with autism, the worst thoughts come to your mind. You can feel scared, lonely and overwhelmed. All of these feelings are natural when dealing with a new situation, but it doesn’t have to be terrifying.

Seriously.  The author assumes that the experience of getting a diagnosis is automatically horrifying; the first two sentence are loaded with negative words: worst, scared, lonely, overwhelmed, terrifying. Parents may feel these things at times, and for any number of things, including the sleep-deprivation of newborn care, or even dropping your child off for the first day of preschool or Kindergarten and experiencing the fallout of separation anxiety.  But the process of receiving a diagnosis is described like slogging through of an abyss of despair, with the “4 Stages” listed as 1.Denial, 2.Anger, 3.Grief, 4.Acceptance.

A problem with riffing on these “stages of loss” (familiar to anyone who has taken Psych 101), is that although there is evidence that many people do experience such upon receiving various diagnoses, the very presence of articles such as this may serve to reinforce the despair as much as they seek to lighten it.

How so?  Firstly, many people in various support industries related to disability (including educational and social work realms) are taught that Read the rest of this entry »

Comfort-able

For the first time in months and months — far longer than it should have been, but there we are with the insane busyness of life — a friend and I got together at her house for dinner.

“You look like you’re finally relaxing,” she said after I’d been there a little while, and we decided to not wait in conversational limbo for the third person (who never did show).  “You were so stiff when you came in,” and she made reference by some expression (that now escapes memory) of how I was indicating being relaxed by behaving more normally.

Not “normally” in the er, Normal (neurotypical) sense, but me-normal, where I felt comfortable enough to sit and rock slightly, to not worry about making eye contact, to get a bit flappy at funny events or when agitated, to shed the pent-up motor tics.  To just be me. To “let my hair down” and to set aside unnecessarily restrictive social norms.  To eat my chicken and rice with a fork, and the still-crisp cooked green beans neatly with my fingers (as one does with fries or asparagus), because her table was Nicely Set for our aesthetic enjoyment and yet we weren’t standing on formality.

We talked about typical stuff, like the foibles of spouses, the concerns for college-age kids, the drudgery of eternal home repairs, the quirks of cats, of temperamental computers and the thrills of new mobile phones, of career changes, and the vicissitudes of economic times.

We also talked about atypical stuff, like the difficulties of college education and employment when dealing with various educational/neurological disabilities, of managing arthritis pain and joint issues, of the wonders of TMJ bite blocks, of dealing with the profound cluelessness of the general public for the extreme pain of migraines and how hospital Emergency (A&E) is a horrid place to physically be when in the throes of gut-wrenching-head-splitting pain and the snarkiness of some medics therein.

Crip chicks like we don’t diss on our disabilities, we diss from our disabilities.  It’s not poor-pitiful-me whining but the healthy pitch-a-bitch whining from someone who understands, even when our respective glitches are not all issues shared in common.

I need more social life, but there’s so much of ordinary socialising that I find enervating.

I’m not antisocial; the interest in socialising is not a binary form, where one either does it or doesn’t do it.  But over the years I have learned what I actually enjoy (as opposed to what one is “supposed to” enjoy).  My intro/extroversion levels vary wildly because some kinds of social interaction are nothing but draining, while others leave me (if not physically) at least spiritually recharged.

I’m not fond of socialising by large quantities of people all chattering with each other in the same room, where the conversations get all blenderized from my Auditory Processing Disorder, to where I end up trying to tease apart sequential fragments of half a dozen unrelated conversations, fruitlessly trying to follow just one voice or two, and reasoning out from fractured context what some of the mis-heard words could possibly be.

I’m not fond of socialising where the content gets watered down to less-consequential subjects of chit-chat, by dint of less privacy and some unwritten code of how long one is “supposed” to entertain time with another guest before moving on, and by the other unwritten rules of conversational quid pro quo, where my monologuing to fully deliver a story complete with back-explanations and thesis statements delivered at the end is discouraged in favor of witty repartee.

I like the time to mutually share and analyse our respective news, and the real, content-laden answers to our mutual questions of, “How are you?”  The real “How are you?” question, not the fluff of “How-are-you?” or “How-was-your-day?” that is the social minefield trying to distinguish between polite interested query of acquaintances and polite disinterested query of associates (that latter social coin that is all form and no content), or the mental quagmire of trying to answer “How-was-your-day?” when the question is so vague and our answers are so experientially linear and tangential instead of whatever the hell others were expecting.

I was comfortable — we both were comfortable — because together we had created a social environment that enabled our mutual comfort.  It was an agreement that had been developed by long familiarity and by various conscious decisions over decades, to create a friendship that fulfilled our individual needs over the culturally-proscribed forms.  True friendship enables positive interactions, and supports needs and affirms and enriches our lives.

Here’s a toast to real friendships!

Fruit flies like a banana

“Time flies like an arrow; fruit flies like a banana.”

Some of my special interests are insects, science and special education. The three subjects rarely intersect, but you can bet that when they do, it’s going to be interesting! Populist politics is once again — or rather — still degenerating into vast bogs of anti-intellectualism.  As noted across many news-editorial and science blogs, Republican Vice-Presidential candidate Sarah Palin positively excels at scorning science.  It shows up not only in her stump speeches, but also in her belief in young-earth creationism and stance on teaching Intelligent Design in classrooms. One of the latest foofaraws is her denunciation of funding for research on fruit flies.

“You’ve heard about some of these pet projects, they really don’t make a whole lot of sense and sometimes these dollars go to projects that have little or nothing to do with the public good,” Palin said. “Things like fruit fly research in Paris, France. I kid you not.” [YouTube link]

What does Palin have against this line of science?  Well, that’s a bit puzzling, especially when we look at the subject of her first policy speech.  The VP candidate was talking about special education services and the Individuals with Disabilities Education Act (IDEA).  But all the pro-funding talk was a bit of a turn-around for the Alaskan governor, who had previously cut the funding for Special Olympics in half.

What really stood out is that within her speechifying, the intent of her points about science funding collided with the actual content of part of what she was saying. Palin was (among other things) advocating for Read the rest of this entry »

Yes, they really are irrational

Or at least, more so.

If you have ever sat on the sidelines thinking to yourself that the humans don’t make sense (to the point that others compared you to the character Spock from Star Trek), there is some research evidence vindicating that perspective.

Professor Ray Dolan’s research group at the Wellcome Trust Centre for Neuroimaging, University College London, have an article in the recent issue of Journal of Neuroscience (link to press release). Using a study to examine the decision-making in autistic and neurotypical subjects, they found that the former were less likely to be swayed by “framing effects” in the opportunity descriptions.

“People with autism tended to be more consistent in their pattern of choices, their greater attention to detail perhaps helping them avoid being swayed by their emotions,” says Dr Neil Harrison.

Although this attention to detail and a reduced influence of emotion during decision making is beneficial in some situations, it may be a handicap in daily life, explains Dr Benedetto De Martino.

“During social interactions a lot of information must be processed simultaneously, making this a very complicated computational task for the brain,” he says. “To solve these complex problems we rely on simplifying heuristics – gut instincts – rather than extensive logical reasoning. However, the price that we seem to pay for this ability is that sometimes irrelevant contextual information leads us to make inconsistent or illogical choices.

“Less reliance on gut instincts by people with autism may underlie their difficulties in social situations, but also enable them to avoid potentially irrelevant emotional information and make more consistent choices.”

As ever, it helps to remember that the benefits or problems associated with skewed skill sets will always be affected by how necessary or valued are those skill sets.  The important part is to enable people by arranging their (home, job & school) workloads that will utilise their skills, rather than accentuate their deficits.  After all, we all have skills and deficits — some of us have more pronounced skills and/or deficits.

Wanted: Planet with longer rotational period

It’s not just me. A lot of people whom I know in person or via the internet have complained about near-futility of trying to get to sleep earlier at a “reasonable” time, meaning one that would give a person enough hours of sleep before having to rise for the next day.

My children and I can’t get to sleep before 11 p.m. unless we’ve been hit by dire viruses, or else have simply stayed up the entire night. In contrast, hubby can retire early and then go from laying down to snoring in less than five minutes, and we’re all mystified at how he manages this! Obviously, such a somnolent physiology was not something our children inherited from dad.

While our young adults have endeavoured to find college classes that start later in the morning (not unlike the majority of college students out there), I myself do not have the luxury of that option. I’m expected to be at the school at 7:30, which means leaving at 7:00. (In reality, I need to leave by 7:10, but I keep aiming for 7:00 to give me the necessary buffer in my nutz ADHD distractedness.)  Given the zombie-like staggering arthritic stiffness and mental sluggishness of my morning routine, I need to roll out of bed at 6. Now that really isn’t an unusual time for working folks to get up, but my problem is that for most of my life I’ve not been able to get to sleep until midnight, even when I’ve put myself to bed by 10 p.m.

Part of that delay was due to the fact that Read the rest of this entry »

That old social bugaboo. Again. Still.

So, recently I was observed while teaching an evening class, and a couple weeks later had the opportunity to meet and discuss the professor’s observations.  Except for one problem, most everything else can easily be resolved.

I was able to explain how the combination of illness and exhaustion were affecting me, as well as how accessory issues like Auditory Processing Disorder and tinnitus and prosopagnosia meant that I had to either work harder or do some things differently.  I explained how I took notes during the classes of what I wanted to do differently, to keep improving my teaching. I think that overall the discussion went well.

The prof had some really good suggestions, such as repeating questions, or asking students if I had answered their question.  He reminded me not to mutter to myself when looking for something, as it was distracting to the students.

Since the observation, I decided to have the students pick up their returned papers from a pile, instead of trying to pass them out. That had not worked out well.  Due to my faceblindness, I was carrying around my seating chart and asking each person if they were so-and-so before handing them their paper. Students can accept that the first week or two of school, but even though I have mentioned my problem more than once, the concept is really hard for most people to get their brains wrapped around.

Halfway into the semester, I’ve finally sorted people out with regards to my prosopagnosic identification crutches, but I’m still working getting the names attached to their individual gestalts.  The other week I was entering grades and finally realised that there’s a student who is in both of my classes!  That this student is rather generic looking, quiet, and sits in the back of the classroom doesn’t help, faceblindness-wise.

But after the whole review experience had passed beyond the anxiety level into the stage of applying the information positively, I am still sighing over one point.

I thought I had gotten past this. I thought I had it down pat. But apparently, I still need to work on making eye contact.

« Older entries

Follow

Get every new post delivered to your Inbox.

Join 394 other followers