John Elder Robison's Blog, page 9

Jason Wolff from the University of North Carolina at Chapel Hill reported on a study of at-risk infants at the IMFAR 2014 press conference today, and it got me thinking.  At-risk studies follow tykes whose family history suggests they have an elevated risk of being diagnosed on the spectrum.  Researchers hope to learn what sets the at-risk kids who develop autism apart from those who don’t. 
What are we learning, and how are we acting on that?  Are we making the right choices?
He says repetitive behaviors may be one area of difference.  Dr. Wolff found distinctly different repetitive behaviors in the children who were ultimately diagnosed with autism.  These differences showed themselves as early as 12 months.
The excessive repetitive behavior set them apart from other same-age tykes who did not go on to receive autism diagnoses.  The behaviors varied from tyke to tyke, but across the board there was more hand or wing flapping, more spinning, more insistence on sameness, and even more head banging and other self-injurious acts.
Dr. Wolff's work is a major achievement and I applaud both his efforts and his success.  The question is, what next?  In his talk, he said, “the earlier we can pick this up, the earlier we can start intervention.” 
That’s when I perked up my ears.  Picking up distinctive behaviors at 12 months is a great achievement, but is quick suppression the correct answer in every case?  As an autistic adult, I had to wonder.  Ten hours later, I’m still wondering.
If I had a baby banging his head on the floor, I would be looking for intervention tomorrow.  I would be terrified that he’d do himself permanent damage.  But what if he flapped his wings and flew?  I did that, and it never harmed me.  How might I be today, if that behavior were “corrected” through early invention 50-some years ago?
Where do you draw the line between stopping something unhealthy and tolerating or even encouraging natural difference?
Might an early intervention have squashed my creativity before it even sprang into view?  No one can know.  And that is the problem with some of today’s intervention, well meaning as it is, and as vitally important as it is for some kids.  We cannot know how many less-impaired kids are being harmed or stunted though our well-intentioned “corrective” efforts.
We say “every autistic person is unique,” but then we talk about our population as if we are all the same.  “Once we detect the behavior, we apply early intervention.”  There’s not much acceptance and encouragement in that phrase.  Yet those are the emerging bywords for the autism community.  Autism Awareness is becoming Autism Acceptance all over the world.  We're recognizing autism as a disability for many and a gift for some; we're also seeing it as an essential variant of the human genome.  It comes with problems, but it also carries gifts.  We've realized the "disease model" doctors embraced 10 years ago does not really apply.
Today we know that some autistic behavior should not be suppressed.  When we exhibit a behavior, it is for a reason.  People – like other animals – do not do things for no reason at all.  We do what we do because it makes us feel good, stops a hurt, satisfies our hunger, or meets some other need.  It may not be obvious to an outside observer what need is being met, but rest assured, there is one.
Rather than ask “how early can we correct the behavior,” I think we would be better advised to ask, “why does an infant bang his head on the floor?”  I was a head banger, long ago.  Try as I might, I cannot recall for you now what I hoped to achieve by denting the wall in our apartment.  But I know it was a very deliberate action on my part.  Bang.  Reflect.  Bang. At some level, I liked it.  I did it a long time.
If you want to truly stop that kind of behavior, you need to figure out what need it fulfills, and fill that need another way.  Saying, “don’t do that” isn’t an answer.  Interventions for head banging rarely work because people seldom get to the root of the issue – why do we do it?  It’s hard to answer that kind of question because it requires getting into the heads of autistic kids and neurotypical psychologists are ill-equipped for that task by their design.
Then there are the repetitive behaviors that are not obviously harmful.  It’s my belief that autistic behaviors that don’t harm us, and don’t harm others, are best left alone.  Why not let them go?  I agree we should teach kids not to do injurious things.  And we should teach kids not to do things that will get them teased or bullied.  But the rest . . . ?
We are beginning to recognize and embrace neurodiversity, especially among adults.  We see how “different” people bring fire to the world, and we need that fire to bring ideas to a boil and pop them out into the world.  Our goal should not be to stamp it out in infancy.  Rather, the goal should be to tend and nurture the fire-bringer, and keep her from getting burned in the process.
At the same time, we might recognize that some people in the fire-bringer’s family won’t have the gifts of fire, but they will have disability.  How can we relieve such burdens as they may have, while encouraging the unique and special among us?

I want to be absolutely clear on one thing - I am not coming out as an opponent of early intervention. I have seen and heard too many stories of positive transformation of major disability to do that.  I'm just suggesting that early intervention - powerful as it can be for some - is not the answer for every child who shows non-injurious autistic mannerisms.
We have no idea how to predict which infant will develop into a star, and which will be crippled as an adult.  And this isn’t just an autism problem.  We can’t tell that for typical kids either.  We can identify certain serious genetic problems – SHANK 3 mutations for example – that are associated with profound intellectual and physical disability.  But beyond that – when we diagnose by watching things like hand flapping – we have no idea of the future development of those kids.  We’ve no clue how they will turn out.
Deciding when and where to intervene, and how, is getting much harder as the detection tools evolve faster than we can understand their meaning.  Intervention is also complicated when the ethical landscape is shifting.
We can’t lose sight of the fact that some infants growing up with autism will suffer greatly unless we intervene successfully.  But others will be the different quirky people who make the world run.  We can’t wipe out one as we ease the pain of the other.  But we have no idea how to tell them apart, especially at 12 months of age.
I don’t pretend to have the answer to that question.  As I wrote above, there are some genetic markers for very serious disability, but when we move beyond those . . . it’s not much different from predicting the future in any other area.  We can’t do it.
It concerns me that this is not really being discussed as we expand our efforts to detect autism and difference earlier and earlier.  Some of today’s autistic infants are surely the Beethovens and Einsteins of tomorrow.  Where will we be, if we “correct” their trajectories before they even read or write?  We’ll never know what we lost.

How might we start this discussion?

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On.  He's co-founder of the TCS Auto Program school and Neurodiversity Scholar in Residence at the College of William & Mary.(c) 2007-2011 John Elder Robison

It's been a while since I had a story on writing, even though some think this is a writer's blog.  Today's post is a guest essay from friend and fellow author Karen Dionne.  Karen may be best known as a founder of Backspace, one of the best sites on the Internet for writers of all shapes and sizes.  This fall, she's hosting a star-studded workshop in Salt Cay, Bahamas.  Here's some background about the island, and why you'd want to visit.  Assuming you're the writing type, of course . . .

* * *

























If you
Google "Salt Cay, Bahamas" and select the satellite map view, off the
coast of Nassau you'll see an impossibly tiny green and brown spoon-shaped
strip of land in a turquoise sea.

Zoom closer, and coconut palms and white sand beaches appear.
Closer still, and you can see the blue roofs of Dolphin Encounters which shelter the
dolphins and sea lions that live in the lagoon.




In the late 1800s Salt Cay [pronounced
"key"] was the haunt of privateers and pirates who visited the island
not to bury treasure, but to cull salt from the lagoon to preserve their food.
Today the island is the home of the 3 dolphins who played the famous aquatic
star in the Universal Studios movie "Flipper" with Paul Hogan and
Elijah Wood.

This
incredibly beautiful island also has a unique literary history.

John T. McCutcheon, The Chicago Tribune's chief
foreign correspondent, Pulitzer Prize winner, and dean of American political cartoonists,
purchased the island in 1916 sight unseen for $17,500.



During its heyday as a social destination in the 1920s McCutcheon hosted
numerous earls, counts, dukes, and duchesses. These were joined by Drew
Pearson, John Dos Passos, James Thurber, Arthur Crock, Archibald MacLeish, and
Kenneth Roberts.




In later years author John Marquand became the island's first
regular renter. Charles Lindbergh and his wife, Anne, who were friends of
Marquand, came down once for a visit, and during her stay on the island Anne
Morrow Lindbergh worked on her book, Gifts From The Sea.




William Styron also vacationed on Salt Cay, where he put the
finishing touches on his soon-to-be-bestseller Sophie's
Choice. Styron loved Salt Cay, and dreamed of establishing a
writers' colony there.




"Don't
sell it," he implored the owners who were struggling to keep up with the
expense of maintaining a private island. "Wait for me. I'm going to get a
bundle soon."

The island sold before Styron's book did, so Styron never got the
chance to fulfill his plans. But now the island's current owners are rekindling
his dream by hosting the Salt Cay Writers Retreat October 20-26.




With a faculty that includes
#1 New York Times bestselling authors Robert Goolrick
and Jacquelyn Mitchard, editor Chuck Adams (Algonquin Books; Water for Elephants) and Amy Einhorn (Publisher, Amy
Einhorn Books; The Help), and just 65 students,
the Salt Cay Writers Retreat promises an unparalleled opportunity for advanced
literary and upmarket commercial fiction writers, memoirists, and narrative
non-fiction writers to take their manuscript to new heights of accomplishment
in a gorgeous and inspiring setting.




Each morning will begin with a small-group workshop crafted to
provide writers with individual attention within the bonds of a close, friendly
community. Afternoons will be spent writing, or exploring Salt Cay with the
instructors and learning more about the writing life from the vantage point of
a white sand beach. Special outings to swim with the dolphins and to experience
the island's unique history are included as part of the curriculum, while evenings will be
filled with nightly cocktail hours with student and faculty readings.




Styron
would have been pleased.

~~~~~

Karen Dionne is the
internationally published author of two science thrillers from Berkley. She is
co-founder of the online writers community Backspace, and in addition to
the Salt Cay Writers Retreat, she organizes
the BackspaceWriters Conferences held in New York City
every year.



Blog host John Elder Robison is the NY Times bestselling author of Look Me in the Eye and Be Different.  His newest book, Raising Cubby, is now in bookstores everywhere, and online in ebook and audio formats

(c) 2007-2011 John Elder Robison

How indeed?



I have 25 years invested in my business, Robison Service.  It's like a child to me.   Yet I can only be there part time, because of my other commitments.  I worry when they struggle, and blame myself.  I wish I was there more.  I wish I could run it more capably.



I began this writing career, but the book industry is changing just as the music industry did.   It's not clear whether I can derive much of my support in a world where so much content gets out for free.  



I feel a great desire to help others growing up or living on the autism spectrum.  To that end I serve on boards and committees, where I try to push for beneficial change.  Do I succeed?  Only time will tell.



Then there are the groups I speak to.  They seem to appreciate what I do, and to the extent such engagements come along, they are great.  Speaking takes me all over the world and my efforts seem appreciated.  That much seems like a win win situation



What about the photography?  People often ask why I dont do a book of my photos.  But making a book is a vast undertaking, and photo books don't sell many copies as a rule.



Like most people, I have many choices for how I spend my time.  I want to do good, but I want to feel economic security too, and I don't anymore.  It's so hard to strike a balance, to know the best way  to proceed.



Can we ever know?(c) 2007-2011 John Elder Robison

I've got a lot of travel ahead of me these next few months as I travel for the release of my new book - RAISING CUBBY.  It's the story of a dad (me) his kid (Cubby) and tractors, trains, a touch of Asperger's and a sack of explosives.



The book will reveal many secrets parents need to know, including:

- Where kids come from

- The truth about Santa

- Where he gets the coal

- How to drive a locomotive

- What to do with your kid on a Sunday afternoon 




It's truly parenting at its very best.




Here's what's happening the next few days:




Saturday and Sunday: Watch Cubby and me on the Sanjay Gupta Show on CNN, Saturday at 4:30 and Sunday morning at 7:30




Monday - Join me at Vromans of Pasadena, 7PM

Tuesday - Book Passage of Corte Madera, 7PM

Wednesday - Capitola Book Cafe, Capitola, 7:30PM

Thursday - Hennepin County Library, Minneapolis, 7PM




The following week sees me at Danville College in Danville, KY




April 1st will be celebrated with a program in the Campus Center Auditorium, University of MA, Amherst.





April 2 is World Autism Awareness Day and I will ring the opening bell on the stock exchange.  Look for more details next week . . . .




Canada is coming in April, Australia is slated for August.




See you on the road

John
(c) 2007-2011 John Elder Robison

Earlier today a television interviewer asked me some
questions about War Pugs.  As a long time Pug fancier I did my best to satisfy his curiosity but I realized there may be more
people out there with questions. So I’ve set down this brief set of facts,
tidbits, and trivia . . . 




I’m often asked what the correct name is.  Are they Imperial Chinese War Pugs, or simply
Imperial War Pugs?  In the western world
it’s become common to add “Chinese” to the name, but in earlier times, they
were simply Imperial War Pugs. There was no need to name China, because it was
already known as the center of the world, and the home of the Emperor.




Everything changed with the arrival of the British invaders,
off the Port of Hong Kong, 150-some years ago today.




People often ask the difference between a common pug and an
Imperial War Pug.  Basically it comes
down to this:  The Imperial War Pug is
the pure line.  The common pug – purebred
as it may be, is a lesser creature.  




The difference is readily apparent to an expert, as any dog
show judge will attest. The War Pug has finer features, greater intelligence,
and a cleaner odor when wet.  It is, as
they say, all a matter of breeding and culture.




Pugs of all sorts were unknown in the western world prior to
the sacking of the summer palace by British soldiers in 1861.  At that time soldiers captured some animals
and took them back home as pets, not knowing their importance in Chinese
society.  After that, it was as if a dam
had broken.  It seemed like every China
clipper captain had to have a pug, and an underground trade was quick to
develop, despite the Imperial prohibitions on sale of the animals to the West. 




Imperial War Pugs were long the property of the Emperor, who
gave the animals to his favorite generals as a token of respect and
appreciation.  Common pugs – from whom
the Imperial line was derived – were frequently kept by Chinese nobility but
always forbidden to the common man.




In fact, a commoner found in possession of a Pug might well
be immediately put to death by the sword. 
As you can imagine, the sight of a Pug running loose in a village – rare
as that may have been – was enough to inspire terror in the hearts of the
peasantry, who lived their lives in the shadow of the Emperor.  “Fear this, and tremblingly obey,” were the
closing words of every Imperial proclamation, and the phrase was backed up with
the threat of immediate decapitation.  Even
handling a Pug might subject the offender to punishment.  The loss of a hand was not at all uncommon.




Pugs were not to be trifled with.




Most pugs raised by breeders today are derived from the
common pug stock that was acquired from traders in the 1880s, often as part of
an exchange for opium.  Many a pug dog
sailed for a new home in the China clippers of the late nineteenth century.




When people hear the name – Imperial War Pug – they may
mistakenly assume the animals are vicious. 
Far from it.  War Pugs are
peaceful creatures, devoted to a life of Zen and meditation.  The image of a War Pug, meditating atop a
field of fallen soldiers, is indeed iconic in Chinese literature of the early
period.




War Pugs – like good generals – know war is always a last
resort, and never desirable.  Some say
the Pugs acted to calm their masters; many of whom were not known for mercy on
the battlefield.




When a general died it was common for his Pug to be buried
beside him; hence their discovery in tombs.  
It was also common for likenesses of the Pugs to be carved from stone,
and many tombs feature both soldiers and War Pugs – carved from living rock –
guarding their masters for all eternity.




Today most War Pugs live lives of leisure, passing their
days on sofas and pillows.  Few are
called upon to reflect on the brutality of war. 
But they are there, ready, and we might be well advised to give them to
our own generals, in Iraq and Afghanistan, as they search for peace in those
troubled lands.  Perhaps the Pugs could
show them the way, as they did for so many years in China.
(c) 2007-2011 John Elder Robison

Cubby moved the throttle forward and the rumble of the
engine increased.  Below us, the deck
began to vibrate as the old tug felt the strain of pushing.  The water behind us roiled as the propeller
bit in, ten feet below.  Far above us,
two seamen looked down from the stern of the tanker.   Slowly
but steadily, the big ship began to turn.




“Two thousand horsepower, and you can barely see her moving,”
the mate said with wonder.  At least we weren’t
going backward anymore.




Cubby looked down at the milk crate I’d stood him on.  “You’re doing fine,” the captain said, and he
smiled happily.  He leaned forward and
studied the gauges, just as I’d taught him. 
Just then, there was a series of loud bangs, like a giant slamming a barrel
with a sledgehammer, and chunks of red, blue, and yellow material popped up in
the wake behind us.



It was, as they say, one of those pivotal moments in his six-year-old life.




Down below, an alarm bell began to ring. . .







RAISING CUBBY is coming. March 12.  Be ready







(c) 2007-2011 John Elder Robison

The bulldozer pointed straight down, into the wreckage of the house. Somehow, Cubby had gotten the machine moving, run it into the building, pushed the structure over, and then fallen fifteen feet into the wreckage of the basement. The only thing that stopped the big Cat was the fact that the tracks now spun helplessly, against the concrete foundation walls.

"Dad," Cubby shouted!! "Get me out of here!!"

Luckily, he'd been wearing the seat belt.

RAISING CUBBY. Parenting at its very best. Coming to a bookstore near you in FIVE MORE WEEKS. Be ready!!



On sale March 12, 2013

http://www.johnrobison.com/purchase-books.php


















(c) 2007-2011 John Elder Robison

What have we done for our community?  Angry parents direct that question at the
IACC, the CDC, NIH and Autism Speaks every day. 
They say we’ve spent hundreds of millions in research, and talked about
all our great accomplishments in research, yet the lives of the autistic people
around them are not one bit better.  How
come?




I’m beginning my seventh year as an autism advocate –
whatever that means – and one thing that’s clear is that the dissatisfaction
expressed by members of our community is just getting louder.  The inescapable conclusion is that the
organizations that purport to be here to help are not delivering whatever it is
we want or need.




I think the answer lies in the history of two
organizations.  Autism Speaks was
chartered to use science to find a cure for autism; which the founders saw as a
terrible disability.  The IACC was formed
under the Combating Autism Act of 2006, to advise CDC, NIH, and others.  The very name CAA implies an epic battle
against something very bad indeed.




With that background it should come as no surprise that both
organizations began promoting research into the base causes of autistic
disability.  Progress was made –
scientists identified numerous possible causative factors for serious autistic
disability.  But the identification of
genetic errors (for example) does not quickly translate into a therapy for
affected individuals.  The result:  we know more, but it doesn’t help the people
living with autism today.




At the same time, other researchers developed new therapies;
techniques that helped autistic people at all levels function better and live
more independently.  New technologies
emerged that gave voice to people who were formerly largely mute, and they said
some surprising things.  As positive as
those development were, though, they were limited to those few people who could
afford the new therapies or who received them free as part of research
programs.




The expansion of knowledge about autism led to an expansion
of the way we define it.  As we
recognized traits of autism, we found those traits in a wider swath of
population than anyone previously imagined. 
That led to an explosion of diagnoses and the perception that autism was
a runaway epidemic; something that fed the fires of “cure” more and more.




While that was going on, possible environmental triggers for
autism were discussed, and the possibility that we are unwittingly poisoning
our children and ourselves raised its scary head.   We certainly need to find out if this is the
case, and take corrective steps as needed. 
But important as that is, it doesn’t help today’s autistic population.




For us, the discussion of how we got this way is a
not-too-productive and often offensive sideline.  We’re most concerned with making our best
life with whatever cards we’ve been dealt. 
Our needs are many, varied, and disparate, but we’re pretty united in
that we want help and understanding much more than we want to blame someone or
some thing for “making us autistic.”




It all adds up to a situation where most of us are dissatisfied.




You might say we have a few big problems.  First, we have made less progress than people
want in developing tools to meaningfully remediate disability.  Second, the tools we have developed remain
largely unobtainable because they are costly, and not covered by most health
insurance plans.  Increased awareness has
made a third problem painfully obvious in recent years:  Our education, legal, and other social
systems have not evolved in lockstep with our knowledge of autism.  Consequently, we fail in school, have trouble
with the law, and fail socially and in the workplace far more than ordinary
people, and there’s precious little being done about it.




As you might imagine, that leads to frustration on the part
of families living with autistic disability. 
After six years of this, we have an autism community that is very
unhappy on many fronts.




I suggest it’s time for a change, and I offer this as a
constructive suggestion for IACC, NIH, CDC, and Autism Speaks.




I believe in the basic research we have funded over the past
few years.  I have been privileged to
review and vote for much of the work that is funded today, and I am very
confident that it will lead us to new and ultimately beneficial
discoveries.  At the same time, I
recognize this is a very long-term game, and the biggest benefits may not
arrive for a decade or more.




In the past few years I have seen an increasing recognition
of this reality, and I’m happy to see that we are funding more research into
behavioral therapies of all sorts to help today’s autistic population enjoy
their maximum potential for success and quality of life as we are right
now.  In other words, we are beginning to
embrace the notion of “helping us be the best we can, the way we are.”  That is vitally important because it is the
most effective thing we can do for our population now.




I think that work should continue, but I believe we should
direct a significant fraction of tomorrow’s uncommitted research funds in a
different direction.  I believe we should
be funding more studies to evaluate the effectiveness of tools that have
already been developed, and I think we should fund more research aimed at
building a solid base of evidence for what emerges as the most effective extant
therapies.




I also think we should conduct more studies to evaluate some
of the unconventional therapies being marketed to parents today.  Skeptics are often dismissive of alternative
diets, vitamin or hyperbaric therapies (to name just three) but the fact is,
many parents employ those techniques, and I believe we have a duty to ascertain
their efficacy and safety for the sake of the kids. 




Finally, I believe Autism Speaks and other groups that can
lobby (NIH and CDC can’t do that) should shift more of their resources from
basic research to funding and using these studies to push state and Federal
health care legislation that will put more of these therapies under the
umbrella of general health insurance.




I hope we can fund Autism Speaks and other lobbying groups
to address the broader social challenges of autism:  acceptance and adequate supports in our
schools; bullying and discrimination; enhanced understanding in the legal
system; and understanding and developing ways to help us find parity in job and
social success.




That, I believe, is the best way to deliver meaningful
benefits to our real constituency – the people living with autism today.




I’d like to close with some facts, and a call for action:

1 – We have developed a number of promising therapies – some
medical, some behavioral, some environmental – that seem to offer meaningful
help to certain autistic people.

2 – We see the promise of new technologies like tablet
computing/apps but we’ve left most development in the hands of private
companies, which leaves the resultant products unaffordable as things stand
today.

3 – History shows that some of the greatest discoveries come
from basic research and I believe we must continue in that direction.  At the same time, we can’t overlook the needs
of people today.

4 – The reason most new therapies are not covered by
insurance is that there is not a strong body of evidence that they work, nor
are there standards for how they will be delivered. Consequently, insurers
wriggle off the hook saying they don’t know what they’re paying for, or if it
will work.  That’s why there’s such a
critical need to fund studies that build evidence, and develop standards for
delivery.

5 – Changing the way our education, legal, and social
systems accept, engage, and help autistic people is going to be a massive and
expensive effort; one that is just now beginning.  It’s even more critical as we begin to understand
the true size of the autism community (including the large numbers of
previously undiagnosed or misdiagnosed adults.)




This suggestion represents a significant shift of direction
from our current policies.  I hope we can
begin making this or a similar change, because the current program isn’t
yielding the results our community wants or needs.




John Elder Robison




John Elder Robison is a member of the IACC, a member of the science
board of Autism Speaks, and he’s served on boards and committees for both CDC
and NIH. The views expressed in this article are strictly his own.
(c) 2007-2011 John Elder Robison

Earlier this week news reports presented a study describing children who supposedly “grew out of autism.” 
There’s been a lot of talk about what really happens, and whether people
can “grow out” of being autistic as they get older.  The authors of the story call that an
“optimal outcome.” 




I’ve written this essay in response to the many queries I
got, asking for my take on that news. 
Well, here it is . . .




In my book BE DIFFERENT I describe the process by which we
can learn how to compensate for ways autism disables us, and by doing so,
emerge in part or in whole from disability.




Psychologists say we learn adaptive strategies, and some of
them work very well indeed for those of us with the cognitive resources to make
full use of them.  I’ve certainly seen
how they helped in my own life.  I was
disabled as a child, but no one would call me disabled today.  I’m independent and function, as are many
autistic people.




But that’s the thing . . . I’m still autistic.  What about the kids in the study?




They ranged in age from teens to twenty-one.  All were screened for autism using the
gold-standard ADOS tool, and their scores were deemed below the threshold.  Yet they too had been disabled as children,
and all had received formal autism diagnoses before age five. There were
thirty-four of them in the study.




What the study found is that those kids – as they grew up –
improved so much in functionality that they no longer qualified for an ASD
diagnosis even though they were well above threshold as kids.




The study does not really say “they grew out of being
autistic;” rather it says they no longer have diagnosable symptoms.  In fact the authors make this same point,
saying the people may still have symptoms that escaped detection or were
sub-clinical. 




We don’t yet have a brain imaging test for autism, so we
can’t look in their brains and say how they might have changed.  It’s all speculation, but I’ll bet they
didn’t change much.  I don’t believe you
outgrow autistic brain differences.




Yet I do believe we can outgrow autistic disability.  The degree to which we succeed varies but most
of us get better as we age.  In addition,
recent studies suggest that our brains may develop in a more typical direction
much later in life – even in middle age – and that may help older people like
me.




Furthermore, I think this study gives real and legitimate
hope to any family raising a kid with autism because it highlights the great
improvements that are possible for some of us. 
If you have a five year old with autism, I’d think that would be very
comforting to read.




At the same time, we should be careful not to read too much
into this.  As the authors say, the kids
who emerged most fully were relatively mildly affected to begin with, and they
started out with good IQ scores.  Kids
who start out more disabled may progress just as far, but their different
starting point might still leave them with significant disability as adults.




I’ll offer another point of perspective.  All the same tools used for the kids in this
study have been used on me. I’ve been tested repeatedly with the most recent
round being last August.  In that ADOS
screening, I was still above the ASD diagnostic threshold.  In the facial recognition tests, I was also
well above threshold.  In the social
function, I was above threshold.




The thirty-four kids in the study therefore tested less
disabled than me, and I am not really disabled in daily life.  But my differences still show up on the
tests.  What does that suggest?  Some of us do an excellent job of masking
disability, especially in middle age.



Hopeful as that sounds - be cautioned!  Any of us can suffer setbacks at any time.  Successful as I seem, life circumstances could change for me in an instant, and I too could find myself crippled by the same autism that makes me seem exceptional today.  The past does not always predict the future, and even though I say we generally get better, there can still be setbacks.



The takeaway from that:  Any of us may need supports at any time of life.  Even people like me - seemingly independent and successful.




So what’s the conclusion? 
Take hope, I say, because I’ve always said we get better with age, and
this study affirms it.  Also take hope
because the kids in this study all test BETTER that me, in terms of not having
traits of disability, and I’ve done pretty well.  At the same time, try to be realistic in your
thinking.  This study highlights some
individuals who adapted remarkably well. 
Not everyone will succeed to that degree.  Be happy with what you are, they are, and we
are, knowing life is a never ending process of change and growth and we autistic
people are part of it just as you are.  




John Elder Robison




PS - - -my newest book - RAISING CUBBY - is coming March 12. Order your copy here
(c) 2007-2011 John Elder Robison

I'll be there . . . please join be either live or online, and feel write to write in here with any questions or comments:




Please join us for an IACC Full Committee meeting that will take place on Tuesday, January 29, 2013 from 10: 00 a.m. to 5:00 p.m. ET at the William H. Natcher Conference Center, 45 Center Drive, Bethesda, MD.  Onsite registration will begin at 9:00a.m.

 

Agenda:  The committee will discuss updates on ASD research and services activities and plans for the update of the IACC Strategic Plan for ASD Research.

 

Meeting location:
National Institutes of Health

William H. Natcher Conference Center

45 Center Drive, Conference Rooms E1/E2 - Map and Directions 

Bethesda, MD

 

Nearest Metro stop:

Medical Center Metro – Red Line

 

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. 

 

Remote Access:

 

The meeting will be remotely accessible by videocast  (http://videocast.nih.gov/) and conference call.  Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard. 


Conference Call Access
USA/Canada Phone Number: 888-603-9709
Access code: 7857464

 

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least five days prior to the meeting.  The webcast has closed captioning available. If you experience any technical problems with the webcast or conference call, please e-mail [email protected] or call the IACC Technical Support Help Line at 301-339-3840.

 

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about prior IACC events.

 

Contact Person for this meeting is:

 

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 6182A
Rockville, MD 20852
Phone: 301-443-6040
E-mail: [email protected]
(c) 2007-2011 John Elder Robison