John Elder Robison's Blog, page 12

There were eleven cars scattered about the front yard, and he judged three of them likely to run. The old Budweiser sign was where he remembered it, to the right of the door. It sagged a little, like maybe the fasteners were finally pulling out of the rotted siding.

Up on the roof, chunks of tree branch lay there, mouldering; left over from last season's hurricane. The shingles were covered in moss; a first step in nature's reclamation of a once-proud property.  When the wind was right you could smell the freshness of growing things.  When it was wrong, there was just the stench of the trash pit out back. That was enough to make a dog gag.

As soon as old Jeb opened the door, he knew he was home.  He'd lost a few teeth since the last time he'd seen him, and he was a little more stooped, but otherwise the old sonofabitch hadn't changed a bit.

My newest book, Raising Cubby, is on sale in just six more months . . . .

http://www.amazon.com/Raising-Cubby-Adventures-Explosives-Aspergers/dp/0307884848(c) 2007-2011 John Elder Robison

Over the past few years many of you have asked about the
transcranial magnetic stimulation (TMS) research that I’ve been involved
with.  Some of you have even asked about
enrolling teenagers in behavioral experiments involving TMS.  Today, researchers at Boston Children’s
Hospital are conducting a TMS study that may provide short-term improvement in
visuomotor processing, social skills, and pragmatic language skills




They are seeking male volunteers, 8-15 years of age, with good
verbal skills, an autism spectrum diagnosis and IQ over 80. 




Participation in the study involves 4 visits. Visit 1 will
be a screening visit. Visits 2, 3, and 4 will have subjects doing behavioral
tasks in conjunction with measures of brain activity by TMS, which is a noninvasive
method that measures and influences brain activity. In TMS, a strong magnet is
pulsed next to the patient's head, and small electrical currents are induced in
the patient's brain. TMS is painless and well-tolerated, even by young
children.




There will be no cost to participate in the research and
participants will be compensated with a small token of appreciation.   If the researchers or participants see a
short-term improvement, the participants will be offered the opportunity to
receive TMS as a therapy through the department of Neurology at Children's
Hospital.




If you are interested or for more information about the
study please contact Dr. Lindsay Oberman at 617-667-5247.
(c) 2007-2011 John Elder Robison

Last week's essay on ultrasound generated a great deal of commentary.  Some of the questions raised by readers were beyond my expertise, so I turned to Dr. Manny Casanova from the University of Louisville. He and his colleague Emily williams have spent a good bit of time studying ultrasound and its effects on cells.  They were kind enough to write the following essay and will respond to your questions here on the blog:






















One problem of which we've become poignantly aware is that
ultrasound, especially since the early 1990s, has been deregulated and is
nowadays used to excess. Ultimately we would like to see more research into its
safety, as well as tighter regulations on its use so that its risks don't
outweigh the benefits. We'd also like to clarify that we're not proposing that ultrasound
is "the" cause of autism. What we're proposing instead is that ultrasound
may be one of many risk factors for those who have a selective vulnerability.




Many people when they first hear about ultrasound as a
possible risk factor in the development of autism think it sounds like
pseudoscience. Who can blame them? We've been subjected to many different
hypotheses about what may be causing autism. 
It seems like everyone is ultimately seeking the "holy grail"
of causation. So we're all skeptical when we hear something new, especially
something which seems to contradict our understanding of how we view the
world-- or in this case, how we perceive the safety of ultrasound. After all,
ultrasound is just a picture, right?




That's what we in our laboratory used to think until we
began studying what mediates the effects of ultrasound. In the following
paragraphs we hope to offer a simple explanation on the rather complex effect
of ultrasound on the living cell.




Ultrasound refers to sound that has a frequency above that
which can be detected by the human ear. Sound itself is the force of pressure
through a solid, liquid, or gas; it causes the movement of those particles. In
the case of prenatal ultrasound, the ultrasound transducer emits sonic waves
into the abdomen, the sound enters the body including that of the developing
embryo/fetus, bounces off the tissue, reflecting back, and that echo is
measured by the transducer to form a representative visual image.

Ultrasound is currently used in a variety of ways in
medicine and research, and some of these include:




1) the production of lesions in neurosurgery, similar to the
use of laser;

2) transcranial (across the skull) stimulation of brain
activity, similar to transcranial magnetic stimulation (TMS) or the use of
electrodes;

3) vasodilation, or the widening of blood vessels, which
helps in both visualization of the vasculature as well as the delivery of important
medications to tissue;

4) transdermal (across the skin) delivery of medications
which would normally be unable to cross the skin barrier;

5) wound healing, such as on certain bone fractures and
ulcers;

6) the purification of foods via its oxidative potential;

7) the purification of metals also due to its oxidative
capacity;

8) transmembrane delivery of nonviral genes into target cells
(mainly used in research).




These are just a few examples of how science and medicine
apply ultrasound. As you can probably guess by now, given its capacity at
different levels of intensity to promote cell growth, cell destruction, alter
membrane fluidity (e.g., poke temporary holes in cell membranes), and alter a
cell's activity such as causing a neuron to fire, ultrasound has an incredible
range of effects. It turns out it's not just a picture after all.




The physical effects of ultrasound include both its pressure
on the water within and surrounding a given cell, and through the creation,
oscillation (spinning), and implosion of bubbles in that same liquid. The
latter is referred to as "cavitation" or the creation of a gaseous
cavity within the liquid. Cavitation and noncavitational effects together can
poke transient holes in cells, activate certain molecular pathways within those
cells, cause temperature increases when the bubble violently implodes, promote
the creation of free radicals (oxidation) when that gas escapes into the
surrounding medium which can subsequently damage or even kill a cell, can cause
general disarray within the cell, and at certain intensities may even promote
mutations of DNA.




Most of the deadly effects on cells are generally not seen
at diagnostic intensities levels. However, there is still the potential that
ultrasound is altering how these cells develop and behave; i.e., it doesn't
kill them, it changes them. In the case of autism, we frequently find
abnormalities in neuron number and growth patterns in the brain. Given that
ultrasound has the capacity to promote cellular growth, as well as its overuse
in obstetrics and the apparent rising numbers of autism diagnoses, this is a
prime area for scientific study. Needless to say, this is a gross
simplification of our hypothesis, so for anyone interested in more detailed
accounts, please contact us for further materials and we'd be glad to supply
them (see minicolumn.org/people/Casanova).




Back in the 1960s, '70s, and '80s, the scientific community
was very cautious about using prenatal ultrasound. As much as science knew in
the day, they expressed due concern and performed a good number of safety
studies. From these studies, they decided that ultrasound was ultimately safe
to use in obstetrics. However, science is ever-changing and continually
learning more about development. Back in the 1970s, the height of concern over
ultrasound was whether it promoted spontaneous abortion or reduced postnatal
survival rates, whether it promoted macroscopic growth abnormalities like
differences in birth weight and overall size, and whether it caused genetic
mutations. Nowadays, we know much more about the molecular biology of the cell,
and more as to how development can be affected in microscopic ways which can
have very big effects on behavior. Let's face it: when a postmortem examination
is performed on an autistic person's brain, usually one of the most striking
things about it from a macroscopic level is that there isn't anything unusual.
So the differences in an autistic person's brain are indeed very subtle; they
need to be teased out with various technologies, with a knowledge of the
complexity of anatomical, cellular, and molecular biology, and a nuanced
understanding of early development. Our science has continued to mature, but
unfortunately the early safety studies on ultrasound were never updated to
include this new understanding.




It's time we go back and reassess, with new knowledge,
techniques, and technology, whether or not ultrasound is truly as safe as we
assume it is. It's also time that the regulations on ultrasound be refined so
that we can be doubly sure we're not putting our unborn infants at risk, be it
for autism or some other condition.




Again, what we want to stress is that we're not advocating
the disuse of ultrasound. It's an extremely vital and useful tool in medicine.
But we are advocating that it be used more wisely. For those who are pregnant,
we recommend that ultrasound should not be performed during the first trimester
unless it is an at-risk pregnancy, and especially not within the first 8 weeks
of gestation. The first 8 weeks is the period when the greatest intensity of
growth occurs-- and therefore when the greatest damage can be done. Be cautious
of early and unnecessary ultrasounds. In addition, don't use fetal heart rate
monitors for private use because these are handheld ultrasounds.




                                                                                                            Manuel
F. Casanova, M.D.

                                                                                                            Emily
L. Williams
(c) 2007-2011 John Elder Robison

Above:  Descending into Toronto for IMFAR 2012




In my opinion, the best thing about this year’s IMFAR autism
science conference was the degree to which the community has become
involved.  Four years ago there was
hardly a spectrumite to be seen there, geek scientists excepted.   This year we were everywhere.




Just a few years ago, autistic bloggers and writers gazed in
from the outside and wondered what was discussed in the IMFAR meetings, and what INSAR (the organization who puts on the conference) really did.  Scientists wondered about the wisdom of admitting
the public to what are often highly technical presentations and discussions.  In the absence of openness, conspiracy theory and contempt ran rampant.




Things changed recently, thanks to the INSAR board and the
folks on the Community committee.   We
have seen more community involvement each of the past three years as we’ve
added programming to serve the autism community as well as the researchers.




Autistic artists and entertainers have delighted us with
their performances, and their work.  Not
only has that made an enjoyable addition to the conference, it’s provided an
important humanizing element, especially to younger researchers who may be new
to the field.  The arts build community,
all round.




I am especially happy to see bloggers and writers from our
community of all points of view.  People
who might never have spoken to one another now share meals together and become
friends, thanks to meetings that take place here.




In their writing and other communications, many new ideas
emerge, all with a common theme:  We need
to direct our best scientific efforts to alleviate disability, improve quality
of life, and create the best possible opportunities for our population.




Some writers are critical while others are laudatory.  I’m pleased to see it all.



Our pre-conference for the community was standing room only, as was the stakeholder luncheon and Q&A.  Attendance at those events has gone up every year.




INSAR and its sponsors have continued to offer scholarships,
admission fee waivers, and travel grants to encourage community members to
attend.  That’s a great thing, and it’s
made possible by the conservative governance of the INSAR organization that
generated the financial surplus to pay for benefits like these.




It may surprise you to read that some of the community
openness at IMFAR was inspired by the example set by three US government groups:  the IACC, whose meetings are fully open, and
NIH and CDC who make more and more of their discussions public as well.  Not only are those events open to the public physically, many are webcast and archived online, something INSAR is doing now as well.




I’m proud to have served on committees for INSAR and the
government groups above.  I’ve learned
more than I can tell you here and I’m most pleased at the way others have
joined me to explore and share what we find with the wider world.




I’ll look forward to an even bigger community presence, next
year in Spain.




John Elder Robison

Writing from IMFAR 2012

Toronto, Ontario, Canada(c) 2007-2011 John Elder Robison

Could the increased use of ultrasound during pregnancy be
implicated in autism?




That’s a question I discussed yesterday with University of Louisville
researcher Manny Casanova.




A few stories have raised this question in recent years, but
none have elaborated on the possible process, as he did for me yesterday.   Here’s what he said:




Ultrasonic energy is known to affect cellular membranes and cell
growth.  In fact, ultrasound is used as a
therapy to accelerate bone growth following certain traumatic injuries.  In stem cell research, ultrasound has been
shown to accelerate development of cells. 
Knowing that stems cells are developing into neurons early in the fetal
development, it’s quite possible that addition of ultrasound energy might shift
that balance.  




Those were questions that I’d not heard before, when it came to
ultrasound.  




When I got back to my hotel room, I discovered a number of
scientific papers supporting each of his points, but none really put the ideas
together in the context of autism. I found that fascinating, and somewhat
disturbing.




What I had heard were these questions:




Heating and vibration might also affect a fetus.  Ultrasound will heat water, and the operation
of ultrasonic cleaning systems is familiar to many of us.  Either of those processes might affect fetal
development adversely too.




Like many people, I took for granted the idea that whomever
approved ultrasound for clinical use made sure the power levels were low enough
that the developing baby wasn’t cooked by its operation, or disintegrated like
dirt on jewelry in the cleaning tank.




Not so fast, Manny cautioned me . . .




When ultrasound was developed, it was first used late in
pregnancy, when all these risk factors are minimized.  It was also used by trained staff and the
machines, being new, were likely well calibrated.  Most moms did not get ultrasound at all, and
those who did typically received one or two.




The situation today is totally different.  Many doctors do ultrasound much earlier in an
effort to spot other problems, like Down’s syndrome.  It’s common for moms to get three, four, or
more ultrasounds done.  Finally and most
disturbing, many states have “ultrasound boutiques” in malls where moms can get
ultrasounds as art; for the new baby scrapbook. 





When the goal is a pretty picture, power levels may be turned up
unwittingly.  Safety is assumed by
operators who are not always medical people, and who may have little knowledge
of the underlying processes.




So we have the confluence of more ultrasounds, done earlier, and
possibly with poorly calibrated equipment and inadequately trained people.  I always associated ultrasound with
professional staff in a hospital, but to hear Manny, it can be a lot more like
a tattoo parlor experience. 




In fact, several states have no regulation at all over the use of ultrasound imaging equipment.  Anyone can buy it and make pretty pictures of your innards, perhaps cooking or altering you in the process.  In the hands of the wrong operator, it's like taking your developing baby and stepping into the microwave oven.  That's something none of you would do, yet the mall ultrasound parlors reportedly do a brisk business.  




Ultrasound Zeke has a wall full of beautiful fetal art, but it may have come at a high cost.  




I hesitate to say that’s a frightening prospect, but it’s
certainly one I’d study more carefully. 
If I were pregnant today, I’d be thinking hard if my doctor advised ultrasound
early on, and I’d be reluctant to do it very often.




An energy process that makes broken femurs heal faster is not
the sort of thing you want to fire into the brain of a developing fetus.  His brain is developing fast enough, all on
its own.  We don’t need to amp up the
rate of neuron development.




Remember . . . outside of evolution and the natural appearance of autistic people throughout history, we may never find a single pathway into autism.  There may be a hundred other causative factors.  I'm not suggesting this is THE CAUSE and neither is Manny.  This may or may not be involved . . . I simply suggest it's worth exploring further.




This is the second interesting question from IMFAR 2012.  What are your thoughts?




John Elder Robison

Writing from IMFAR 2012

Toronto, Ontario, Canada(c) 2007-2011 John Elder Robison

Now that IMFAR has wound down and I have a moment to gather my
thoughts I’d like to describe a few of the less-noticed findings from this year’s
conference.




One concerned autism and sexuality.  I found that quite interesting because it’s a
topic I had not seen at IMFAR before, and it raised interesting and probably
controversial new questions.  The key
finding:  Several studies reported a marked
increase in the rate of LGBT identity as compared to the NT population.




In some studies identity was classified by self-report, while
other studies scored identity based on responses to a standardized questionnaire.  Interestingly, the results seemed similar
between the two methods.




When I talked to one of the researchers, I was struck by her
description of what she called “flexibility.” 
Others might call that bisexuality but she seemed to see it as different
from bisexuality in the NT community. 
She described the one as a choice while the other was more “no
preference.”  She further suggested that
our diminished theory of mind might leave us both uncertain and vulnerable to
sexual exploitation. 




I don’t know if theory of mind is the answer but the
“exploitation” certainly hit home for me, as I recalled all the female
spectrumites who have told me awful stories from their own lives.  At the same time, I consider the males, who
mostly talk of dating failure.




When I have written about that issue in the past, I suggested
that females are the principal choosers in our society, so a male who acts
strange (due to autism or anything else) does not get chosen and has a zero
result.  But a female whose choosing
instinct is weakened by autism runs the risk of choosing wrong which can lead
to a very bad outcome.




I know it’s not totally cut and dried, and both parties have to
pick each other, but the evidence I’ve seen on college campuses where I’ve
spoken certainly corroborates that.  Yet
none of the observations from my own life have suggested that LGBT identity is
more common among the AS population, nor have I ever sensed we are “flexible”
in that regard.




Of course, that may simply be because I am not very perceptive
in that area, either because I am autistic or for some other reason.  The data presented described some hundreds of
people; enough to have a meaningful sample and the consistency of that
particular finding between the studies leads me to think it’s probably
valid.  But why?




Why do we autistics have such a different distribution of
expressed sexual preferences?  That is
the question researchers asked, and several possible answers were posited:

1 – We might have more “masculinized brains,” whatever that
means.  I quote those words from one of
the summaries.  I know Simon Baron Cohen
has advanced the idea before but I’d not heard it in the context of sexual
identity.

2 – Since our ability to read other people are limited, we may
be freer to think independently.  So
freed we might make choices that NTs would be inhibited from making.

3- Our sexual identify might be inherently more flexible for
as-yet unknown reasons related to our autistic differences.

4- Our penchant for directness may cause us to be more truthful
in surveys of this type; in that case we may report truer percentages while the
NT group had many respondents who hid their true feelings.  The difference may not be great at all; we
just answer differently.




While the reasons remain an open question, our willingness to
embrace LGBT choices seems undisputed.  All
the studies agreed on that.  I’ll be very
curious to see where this leads.




When I look at my own family, my brother has always been gay,
and I have always been straight.  I am
not aware of any “lifestyle choice” either of us made to be the way we
are.  I’m not sure if or why being
autistic would influence that; it’s a curious finding for sure. 




One final point from this research:  A significant fraction of the AS population
chooses asexuality, a choice that’s not really found in the NT population.  I’ve long known AS people who felt that way
but until now I have never wondered why, or what it may mean.




Here are a few of the questions I had, when it comes to these
studies:




If we believe there really are more LGBT autistics - What sort
of changes might be needed in our social skills training to optimize or be more
inclusive for a LGBT audience? 




If indeed we are more vulnerable to sexual exploitation how
might we protect young people from that outcome?  To answer, we’d have to know how it comes
about.




Growing up LGBT presents any kid with additional complications.
When we combine that with the knowledge that autistic kids are already very
much at-risk for bullying, it paints a disturbing picture.  What should or could we do to help?




If we believe autistics are simply more truthful about disclosing
their identifies in surveys, does that directness subject us to ridicule and
harassment, and if so, what could we do about it?




It’s an interesting question and I’ll be curious to see what
your thoughts are . . .




John Elder Robison

Writing from IMFAR 2012

Toronto, Ontario, Canada
(c) 2007-2011 John Elder Robison

Xi’an, China – Archaeologists in this Chinese city have
reportedly found what may be the earliest terra-cotta figures of domestic
dogs.  The dog figurines, each about ten
inches high, are believed to represent Imperial War Pugs.  They were discovered by accident during
excavations at an 11th century BCE Zhou Dynasty site last week.




http://en.wikipedia.org/wiki/Zhou_Dynasty




According to Chinese legend, War Pugs were first bred by
Emperor Ku, who was said to bestow the dogs on his most favored generals.  The dogs were not meant to be warlike; indeed
their serenity was said to exert a calming influence on his generals, who were
otherwise known for their ruthless efficiency in battle.




The image of a War Pug standing by his General’s side,
gazing impassively over a field of fallen soldiers, is iconic in Chinese
literature of the period. 




Though ordinary Pug dogs were exported from China legally,
the purebred War Pugs remained a closely guarded secret until a few specimens
were captured by British soldiers during the looting of the Summer Palace in
Beijing, in 1860.    Even today, few dog fanciers know the history
of this remarkable breed.




Archaeologists plan to return to the site where the figurines
were discovered next month in hopes of making additional discoveries. 
(c) 2007-2011 John Elder Robison

My ancestor Rowland Jones was the first rector of Bruton Parish Church in Williamsburg, Virginia.  He was an Oxford graduate, from Merton College, ordained by Bishop Henry King and sent to Virginia six years later.  Arriving at Jamestown, he traveled to Williamsburg to become their first rector. He served the congregation faithfully from 1674 until his death in 1688.  I always wondered what he might have preached in his church . . . now I have an idea.  The pastor who followed him - James Blair - recorded some of his sermons for posterity.



This evening, I decided to read one for you.  There are a few bumps as I stumble on the old language but all in all, it still reads pretty smoothly.  Its message, though dated, still rings true today.



This very sermon was originally delivered before the Bruton Parish congregation, in my ancestor's church over 300 years ago.  When you click the link it opens a new window and downloads the 17 meg mp3 file,  which should play automatically.



I'd be very interested in what you think.



The photo below shows the church yard where he's buried, illuminated by starlight last week.











https://sites.google.com/site/johnelderrobison/home/hyp_sermon.mp3?attredirects=0&d=1(c) 2007-2011 John Elder Robison

It's Cubby's birthday today. 
He's 22.  Born April 12, 1990












I still remember the first time I saw that date.  It was on a white plastic nametag, attached
to his cage at The Kid Store in the Holyoke Mall.  Even now, I remember what a close-run thing
it was.  I almost didn't buy him.




"You can't get a kid in those places," my friends had
cautioned me.  "All those mall stores
sell are kiddie mill babies.  They're
awful, the way you take them home and they just go bad.  I've seen them turn crazy, and gnaw their own legs off.  It's horrible.  You want one from good natural
stock.   Go to a small breeder, out in
the country."   I had that advice in mind
but he looked so cute wiggling his little paws in the window.  I'd heard my buddies' warnings loud and clear
though, and I grilled the salesman.




He was very enthusiastic, to say the least.  "Sir," he said, "this is the best baby we've
gotten here in a long time.  Look how perfectly
formed he is.  Watch him wiggle those
ears.  Isn't he irresistible?  He even smiles when you poke him in the
belly!"   I had to agree, but I was still
cautious.




I picked him up, hefted him and tossed him in the air.  "Careful, Sir!" The salesman was
indignant.  "These babies are
expensive!  If you drop him you'll have
to buy him, even if he's damaged."  Money
was tight in those days, and I set him down gingerly.  We took a few other babies out and compared
them. He was the obvious winner, but I could not let on that I was smitten. I
had to seem dispassionate and logical.




"What about kiddie mills? 
Is that where he came from?" I challenged the salesman.  "Sir!" 
The fellow seemed indignant though I was sure he'd heard that question a
hundred times before.  "The other store
at the far end of the mall sells kiddie mill children.  We sell good country raised kids here.  Go down there and look.  I'm sure you'll see the difference.  Even now, all their kiddie mill babies are
howling and biting in their cages.  Look
how sweet and placid this one is, in comparison." 




"He's perfectly formed too. 
Two arms, two legs, eleven fingers and ten toes.  Just a stub of a tail.  Half those kids at the other store are
missing a leg and one has two heads. 
Who'd buy a baby like that?"  I
thought of my friends in the circus but I kept my mouth shut. 




Meanwhile, The Kid crawled around on the carpet.  All he needed was a name and a home.  "Isn't he precious?"  Two couples had appeared.  As they talked, I began to worry that one
might pluck him from the floor and carry him to the cash register while I stood
there undecided.  There's nothing worse
than a bidding war.  I'd see them myself
at the car auctions.




Thinking fast, I made up my mind.  This baby was properly formed and much better
behaved than any of the other units.  Only
the issue of cost remained.  "That's no
problem," the salesman said.  "We can
charge your credit card in twelve installments, interest free!"  What else could I say?  We settled on a price and I took him
home.  "He's going to be a great kid,"
they all told me.  "He'll do every chore
you give him, and then some.  You just
wait and see."




I brought him home, and watched him grow.  In the blink of an eye, he was walking around
and babbling nonstop.  But he would not
work on command.  "Go shovel the
driveway," I told him that first winter. 
He just giggled and rocked back and forth on the floor.  I put him in a snowsuit and carried him
outside.  I handed him a shovel.  "Let's go," I commanded.  He swung the shovel around in circles, making
shapes in the snow and howling with excitement. 





I never did get that driveway shoveled.  Finally, I bought a snowblower.  Pour the gas in, pull the handle, and it
clears snow.  No talking back.   One by one, my dreams of child labor were
replaced by machines.  Meanwhile, the kid
got bigger and ate more food.  He took my
things and claimed they were his. 




Eventually, he grew up. 
Now he lives on his own, and denies any of this ever happened.  "I'm a hard worker," he says.  Look here, and you can see his latest
creation:




Here's another one:















I'm very proud of him(c) 2007-2011 John Elder Robison

[image error] It looks like the folks at Babble.com have chosen Look Me in the Eye as a nominee in their blog competition.  That's never happened before.  If you agree this is a good autism blog - whatever that means - please vote for it at the link above.



Woof



That's me staring back at you below . . . at age two:












(c) 2007-2011 John Elder Robison