Wednesday, January 30, 2013
RAISING CUBBY is coming!
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
Posted by
John Elder Robison
at
9:45 PM
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Saturday, January 26, 2013
What Have We Done for the Autism Community?
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.
Posted by
John Elder Robison
at
1:08 PM
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Thursday, January 17, 2013
Can We Outgrow Autism?
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.
Another takeaway: If my life is a guide, it suggests smart people will fool the testers, while remaining autistic. Using myself as an example, no reasonable psychologist would suggest I should be evaluated for autism if I appeared in his office for depression, marriage counseling, whatever. Yet when I participate in autism studies and am screened by blind evaluators, I come up on the spectrum every time.
And more importantly - when I am tested in some of these cutting edge studies that look for patterns of autism in brain imaging, plasticity, or other "hard" parameters . . . I am in the same autistic group. So my adaptation gets visibly better while the internal differences seem to remain the same.
In my case all the science says I am autistic as always, but it shows less and less the older and wiser I get. My guess is the kids in this study were more mildly affected than me and are examples of the same thing. I have no way to be certain, of course, but that's my suspicion. That's in no way a criticism of the study; just an opinion from a middle aged autistic with some experience of the science.
In the final analysis, I choose to stand by my own phrase: many of us emerge from disability as we get older. Whether we emerge in whole, in part, or whether we go back and forth depends on many things including life circumstances and where we ourselves start out. I've said that for years. While the phrase popularized by this study - outgrowing autism - sounds hopeful, I do not in my heart believe it's real. Looking like everyone else is not the same as outgrowing autism - even when tests don't show disability at that moment.
So what’s the conclusion?
Take hope, I say, because I’ve always said we get better with age, and
this study affirms it even if I do take issue with its catchphrase. 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
Posted by
John Elder Robison
at
3:26 PM
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comments ..I wiggle my ears for your comments
Wednesday, January 16, 2013
Interagency Autism Coordinating Committee meets on Jan 29
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
National Institutes of Health
William H. Natcher Conference Center
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 iacchelpdesk2012@gmail.com 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: IACCpublicinquiries@mail.nih.gov
Posted by
John Elder Robison
at
11:14 AM
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comments ..I wiggle my ears for your comments
Sunday, January 13, 2013
The Leica, and rangefinder photography in today's world
When people see my little Leica camera they sometimes ask
why I still use it, with all the automated alternatives today. Why don’t I use a “real” camera, like a
Nikon? In fact, I have several Nikon
professional SLRs, and I’ve got some pocket point and shoot cameras as
well. Each are “real” cameras, and each
one has its place.
Interestingly, when people look at the images rendered by the Leica, no one questions my selection of photographic tool. My Leica images are sharp, with good
three-dimensional feel and very smooth rendering of the out-of-focus
areas. Color is good, and the images are
free of distortion and artifacts.
But of course the same can be said for images from my Nikon D3S
or a comparable Canon pro SLR. What makes Leica images different? That’s a question I’ve been pondering all
week. . .
There was a time when lens design set Leica apart from other
compact camera makers. Leica images were
sharper, more defined, and in myriad other ways set the standard for compact
camera/lens performance. That’s not so
true today. Comparison images shot with
identical settings using Leica and Nikon/Canon’s best lenses are
indistinguishable to me.
Today, what sets the images apart is the way in which the
camera systems are used. The Leica,
lacking automation, is used in a slow, deliberate way. Pro SLRs, in contrast, are often used as high
performance point and shoot action cameras, where the photographer composes
images quickly and often under adverse conditions, and relies on the automation
in the camera to return a good exposure.
Most of the time, the automation works, and it’s reshaped
the face of documentary photography.
Fast focus tracking has made it possible to shoot close ups of batters
hitting balls and the expressions on the faces of race car drivers going 200
miles an hour. The ability to switch ISO
from shot to shot makes it possible to walk from bright sun into a dim room and
never miss a frame.
Powerful lenses have allowed photographers to zoom into a
scene, isolating it from the surrounding background and increasing the impact
of the imagery. Extremely sensitive
sensors make it possible to take available light snapshots in near-darkness;
something we simply didn’t do before.
Yet we pay a price for using that automation. When we stand behind the lens, tracking a
fast-moving basketball or a bird in flight we lose our sense of the wider
world. Our reality becomes that one tiny
speck we see in the viewfinder, and our images are shaped accordingly.
The rangefinder camera – and this is best exemplified in the
Leica – calls for a totally different approach.
There are no powerful zoom lenses.
Most rangefinder lenses have an ordinary or wide field of view. In addition, the viewfinder shows the whole
scene, extending well beyond the limits of what the lens will capture.
That difference requires the photographer to see and
understand the whole scene, rather than the tiny bit he’d see through a 200mm
zoom. With that perspective, his
compositions will inevitably be different.
In some cases, they will be more realistic and natural to viewers as the
perspective of the picture is closer to the perspective one would have had,
seeing it in real life.
The focus system makes for another compositional
difference. Without autofocus, we must
focus and frame every shot in a slow, deliberate manner. That forces us to think about each image, and
when we do, we again tend to make different decisions.
When photographing action with a rangefinder, the lens must
be set to a certain distance, and the photographer waits for a composition to
come together. When it does, he presses
the button, and gets the shot. One
shot. In that same period, an SLR
shooter might have captured fifty images but their feel would be distinctly
different. Here’s an example.
The SLR images focus on a single player, and a moment:
The Leica image captures a larger context, and a sense of place. You can see it's a college gymnasium, and you can sense the crowd. None of that is present in the closeup, powerful as it may be in its own way.
Without a sophisticated light meter (which can still be
wrong) we must manually evaluate every exposure setting. Each picture becomes the result of
deliberation and care. The image below is a good example:
When we photograph people, our subjects often sense this
deliberation. They respond favorably to
the slow pace of rangefinder photography; often feeling and acting more
naturally.
The smaller size of a rangefinder also facilitates more
natural picture taking. People aren’t as
likely to feel intimidated by the smaller camera. There are streets you would not walk on with
a big SLR, where a nondescript rangefinder goes unnoticed and unremarked.
There are also places I won’t go with a full size SLR simply
because it’s big and heavy. My Leica can
accompany me to those places, because it’s small, light, and fits in a coat
pocket. Remember - the best camera is the
one you have when you need it. If you’re on foot all day it’s a lot more comfortable
to carry a Leica than a Nikon D4.
Weight and bulk excepted, some might say you could do the same things by using an SLR in manual mode. And indeed you could, for the most part. But people don't do that. When they buy a camera with automation, they use it. People do not buy automatic transmission cars to shift them manually, and cameras are the same.
With an SLR, one must take special steps to use it as a manual camera, where with a rangefinder it's the only way to shoot. The simpler tool forces the photographer to think, in ways a modern SLR does not. If you're shooting news, you probably don't want that as much as speed, performance, and reliability. But if you're shooting fine art . . . . that is the place of the Leica today.
By taking away the automation yet retaining such extraordinarily good image making capabilities the Leica forces you to become a better photographer. When your Leica images are less than tack sharp, overexposed, or clipped at one end of the other . . . there is no machine to blame. Just you. If you master a Leica you will take better photos with any camera. I guarantee it.
If I were looking to walk out into the desert, or to the top of a mountain, and photograph the landscape, there is no better camera I could carry than an M8, M9, or MP. If I wanted to capture birds or wildlife I'd make a different choice but for the scenery itself the Leica cannot be beat.
I also use the Leica to create action images (like the basketball shot above) that have a more classic, period feel to them. It's hard to put in words, but that b&w Leica shot certainly stands apart from any other photos of that particular game. In a world where so much looks the same, there's a lot to be said for that.
A farmhouse in the snow
John Sebastian of the Lovin Spoonful sings "Do You Believe In Magic?"
Radio City by night.
And remember - it's not a camera or a picture - but my third book Raising Cubby is coming, March 12, 2013. Be ready.
John Elder Robison
January, 2013
Posted by
John Elder Robison
at
9:30 PM
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