John Elder Robison's Blog, page 13

The Bear Bell

I'm sure you see this before.  You come home, walk out behind the house, and
there they are.  Footprints at the base
of your windows.   It's one thing when
they are human, and you have a lowlife peeping tom to contend with.  It's something else entirely when the paw
prints are from a member of the Ursus family; a black bear.




You see the claw marks at the edge of the glass, and the
meaning is clear.  If he had thumbs, he
would have raised the window.  And he
walked all around the house, looking for one that was open.  Luckily, they were all closed tight and
latched.




How long before he realizes he can just break the glass?




I asked some of the people further up the mountain what I
should do.  Bear Bell, a few old timers
told me.  A good size Bear Bell will chase
most any critter away.  And a Bear Bell
backed up by a Winchester 94 rifle is an unbeatable combination.  I took their advice.




I sawed off a tree near the house, and cut a flat face for
the bracket.  It took some muscle and a
big drill to get the thing up there, but it's mounted solid.  I rigged a rope back to the house, so I can
ring it in safety.  For the first few
days, everything was fine.




I rang the Bear Bell, and the sound rang loud, and
true.  Birds, raccoons, and weasels
scattered at its sound.  It seemed like I
was all set.  I rang the bell every night
before bed, and the pawprints round the house faded away with the wind and the
rain.  There were no more bloody patches
of fur on the lawn, when I came out in the morning.  For the first time in years, I thought it
might be safe to walk outside at night, without a gun and a light.




I went to bed with a new sense of security, until 2:45
AM.  That's when I heard it.  Clang! 
There was a pause, then two more clangs and crash.  At first I was startled, and then I felt the
cold chill.  There is nothing more
disturbing that the sound of your Bear Bell, being rung by something other than
you.  A big something too, one that's
large enough to swing the handle six feet off the ground.  In the middle of a cold dark night.




I grabbed the rifle from beside the bed and ran quickly but
quietly out the door at the other corner of the house.  Turning the corner, I flicked on the light to
illuminate a gray shape, moving fast toward the woods.  I fired two quick shots before it vanished
into the brush.




As the sound of the shot echoed away I heard a rustle behind
me and turned.  Nothing was visible but
the brush a dozen yards back was swaying slightly.  I turned back to where I'd fired the shots.




Walking to the spot, I saw bright fresh blood spattered on
the ground.  Just then, the coyotes
started howling, very close by, and I remembered there were only five more
rounds left in the gun.  I hurried back
inside and bolted the door.




Now it's morning.  The
Bell is still standing, and the coyotes and weasels run from the sound, but
there are Bigger Creatures out there, and they seem to see my Bell as a
challenge.  Tonight, I'm going to bait
Snake's old #15 bear trap with a dead rabbit, and chain it down about ten feet
from the bell.  We'll see what happens
next.




  
(c) 2007-2011 John Elder Robison

A few of my April speaking events

On Monday, April 2, I'll be appearing with a bunch of other great speakers at Woodview Canada's conference in Hamilton, Ontario.  This conference will also include Liz Laugeson of PEERS fame, Dr. Kevin Stoddart, Robin Brennan, Celeste Carter of TEACCH, and more.



April 17 I'll be at the College of William and Mary in Williamsburg VA for a free public event



April 18 I'll be at another free event at Towson University outside Baltimore.



Then I head to Atlanta for two events:  On the 19th, I'll be at the CDC's annual conference, and on the 20th I'll be at Autism Awareness and Education through the arts.



Hope to see you there!











April 25 I'll be speaking with Lindsay Oberman's class in Boston



April 26 I'll be holding a talk and book signing at Elms College, right near home in Chicopee.



April 27 I'll be at Greenwich Country Day School



April 29 is the sold-out ASPEN Conference in New Jersey.



April 30 I'll be at Y.A.L.E. School in Cherry Hill, NJ



And that takes us to May . . . . more to come!


(c) 2007-2011 John Elder Robison

My Appointment to the Interagency Autism Coordinating Committee

Last fall, President Obama signed the Combating Autism Reauthorization
Act, which ensures that Federal autism research and services programs will
continue without disruption. The act also directs the Interagency Autism
Coordinating Committee (IACC) to continue charting a course for autism spectrum
disorder research while simultaneously advancing the delivery of needed
services.




Shortly after the act was signed, I received a call asking
if I'd agree to be nominated to serve on the Committee. I agreed. Yesterday, I
received the news of my appointment by HHS Secretary Kathleen Sebelius.




Read the official release here  




As a member of the IACC I will do my best to encourage
research into tools, therapies, or treatments that will help remediate autistic
disability in all its many and varied forms. I'm keenly aware of the breadth of
the autism spectrum, and the very different needs and issues of our community
members. I will do my best to advocate for all autistic people.




Those of you who follow me online know that I've served on public
and private autism science boards for several years. This appointment
represents an opportunity to continue that work at a different level and I am
honored to have been chosen.




IACC is also involved in planning the delivery of autism
services, and I know that's an area of great concern. I grew up as an autistic
person in a time when people like me didn't receive many services. I have a
son, now 21 years old, who grew up with Asperger's in a more aware era. Those
experiences will inform me as I work with other IACC members to best structure
and allocate our service resources.




In the past, people have asked my stance on neurodiversity
and some people's expressed desire for an autism "cure." I've written quite a
bit about that over the years but I'd like to restate those views briefly here.




I support the idea that the world needs a diverse pool of
thinkers, some of whose minds may be rather different from the norm. I take
pride in being one of those non-standard individuals. In my life, I've seen
many instances where my "different" brain allowed me to solve problems others
failed to unravel. That's the good side of difference. At the same time, I have
experienced disability while watching others succeed at common life tasks that
I could not complete, or completed only with difficulty.




My life experience has shown me both sides of being
different. I celebrate people who succeed by being unique, while supporting the
development of tools to help us in the areas where we struggle, and allow more
of us to live independent and productive lives.




I believe all people deserve to be treated with respect. I'm
very concerned by the growth of both online and schoolroom bullying, and I want
to see more and better accommodation for autistic people in schools and
workplaces.




When it comes to calls for an "autism cure," I should first
say that I strongly support all work that remediates autistic disability. For
some that might be speech therapy. Others struggle with social skills,
loneliness, and chronic unemployment. The ways in which autism disables us are
many and varied and I support research to mitigate all those things.




Autism is a crushing disability for many people, and I
strongly support research that will relieve that burden to autistic
individuals, families, and society.   I know it's easy to look at autistic people
like me, and draw wrong conclusions as to the true burden autism places upon
the average person.  As much as I celebrate
diversity, I cannot celebrate any condition that prevents a person from living
independently, forming relationships, and joining society in a productive
manner.  With the CDC's announcement of
its newest prevalence data the need to achieve this goal is even greater than
before.




I support genetic research that helps us understand the
foundations of autism and thereby leads to better treatment and improved
quality of life. I'm aware of the controversy regarding the possible future
development of prenatal tests for autism, but I do not let those concerns blind
me to the vast potential genetic research offers to autistic people living
today.




Though I strongly support the goal of remediating autistic
disability, I am opposed to the particular phrase "curing autism" because that
implies ridding the world of people like me. I'm all for curing disability, but
autistic people – in our many forms – are essential to humanity's success and I
celebrate our present and future existence.




When an autistic person hears outsiders call for a "cure for
autism" he or she often takes that as a personal attack, just as a Jewish
person would be offended by a call to "rid the world of Jews." I'm sure many
who call for a cure do not understand that autistic people see their words that
way; I hope greater awareness will result in a recognition that we are entitled
to a rightful place in the world, without hiding our place on the spectrum, even
as we hope and strive to live our lives free of disability.




When I talk to mothers and fathers who say, "I wish I could
cure my son's autism," and I explore that phrase with them, I most often find
we want the same thing. We want a person who grows up comfortable, happy, productive,
free of suffering, and able to engage humanity and the world as he or she
chooses. We have a long way to go in reaching that goal, but I am confident we
are making meaningful progress.




I hope my service on the IACC
helps us attain some of those shared goals.




John Elder Robison

March 2012




In the words of the IACC
website,




Objectives and Scope of Activities




The Committee will (1)
develop and annually update a summary of advances in autism spectrum disorder
research related to causes, prevention, treatment, early screening, diagnosis
or ruling out a diagnosis; intervention, and access to services and supports
for individuals with autism spectrum disorder; (2) monitor Federal activities
with respect to autism spectrum disorder; (3) make recommendations to the Secretary
of Health and Human Services (Secretary) regarding any appropriate changes to
such activities, including recommendations to the Director of NIH with respect
to the strategic plan; (4) make recommendations to the Secretary regarding
public participation in decisions relating to autism spectrum disorder; (5)
develop and annually update a strategic plan for the conduct of, and support
for, autism spectrum disorder research, including proposed budgetary
requirements; and (6) submit to the Congress such strategic plan and any
updates to such plan.




Description of Duties




The Committee will
coordinate all efforts within the Department of Health and Human Services
concerning autism spectrum disorder to combat autism through research,
screening, intervention and education. The Committee's primary mission is to
facilitate the efficient and effective exchange of information on autism
activities among the member agencies, and to coordinate autism-related programs
and initiatives. The Committee will serve as a forum and assist in increasing
public understanding of the member agencies' activities, programs, policies,
and research, and in bringing important matters of interest forward for
discussion.(c) 2007-2011 John Elder Robison

Is autism getting more common, or does it just look that way?

Last year I participated in the Autism Speaks-CDC workshop on evaluating changes in the prevalence of autism. Now that the CDC has published the meeting  summary , I'd like to offer a few thoughts on the discussions and findings that came out of this meeting.

I wish I could say we had a solid conclusive finding, but we didn't. If anything, we emerged with more questions than we had when we started. That said, the meeting did produce worthwhile results that will help shape plans and directions for the work ahead of us.

At the outset, we agreed that autism diagnoses have become far more common in recent years. However, we could not decide how much of the increase is an artifact of greater awareness and evaluation as opposed to a true change in incidence. It's possible both things are happening. It may be that we are becoming more aware of autism at the same time as it is becoming more common. Or not.

We talked about studies that found "pockets of autism" in particular places and demographic groups. For example, we discussed a study that found autism was more common near interstate highways in California. Does this suggest that traffic is contributing to an overall increase in autism?  We don't know, because it's unclear whether this situation is new or long standing.

Even when a situation of high prevalence is obviously new – the "Geek enclaves" around tech companies being a good example – we don't know if this is contributing to an overall increase, or simply concentrating autistic people from a wide area into a single spot.

We also lack clear understanding about recognized differences in autism prevalence among different ethnic groups and nations. I don't think we will fully answer questions like this until we have a definitive medical test for autism and put cultural and national differences in evaluation and diagnosis to rest.

Over the last decade we've discovered a number of genetic mutations and a few environmental factors that are implicated in autism. The trouble is, none of these things are new to the world, either. Take mercury as an example. Mercury has been around longer than humanity. People have handled and even eaten the stuff as long as we've had industry. Have you ever heard the phrase, "mad as a hatter?" It refers to people in the hat-making trade, who suffered mercury poisoning 200 years ago.

By way of context, we discussed the broad and alarming rise in childhood allergies and sensitivities. Two well-known examples are asthma and peanut allergy. Fifty years ago the former condition was rare among schoolchildren and the latter was almost nonexistent. Today, both are commonplace.

Many researchers in many fields are trying to understand the increase in these conditions. Could some common factors be contributing to all of these "epidemics," including autism?  It's certainly possible.

One excellent question is this:  Are we more susceptible to immune disorders in general now, and if so, why?  An autism causation-immune disorder connection, combined with a generally greater sensitivity in children today could be a scary prospect.  Is it real?  We don't know, and we're working hard to find out.  

Some laypeople blame it all on "Western diet and lifestyle," but that is not specific enough for us to take real action. There are many questions to explore, but answering them will take years of additional study, and the answers may simply lead to more questions.

For example: Is the proliferation of genetically engineered food affecting us in unexpected ways? Is factory farming harming us by largely eliminating the diversity in our food supply (genetic and otherwise)? Is our shift away from outdoor activity in favor of sedentary activity impacting conditions like autism?

These are all good questions. I wish I knew the answers. I will say this: I do my best to eat a wide variety of organic foods, walk and engage in physical activity as my ancestors did. I don't need a study to show the personal benefits of that lifestyle change.

Unfortunately, none of that helps us understand today's rise in autism diagnoses. The essential problem is this: Since we don't know what causes most autism, it's difficult to make sense of prevalence findings.

Just consider the thought process when we find a town with a high incidence of autism. Is it because the doctors are particularly observant there? Is it because there is a chemical plant nearby?  Is it because there is a science company there, and they employ a lot of people on the spectrum who produce autistic offspring in greater than average numbers?

All are possible explanations, but the history of science and discovery tells us the true explanation may well be something none of us imagined. Yet.

If there was one thing we agreed on at this workshop, it was the broad scope of what we do not know. One outcome of this workshop was a "punch list" of things we should be doing to move our understanding forward in meaningful ways. Without additional knowledge, we can speculate, but guesses aren't answers, as much as we want them to be.

Another central issue is this: In the absence of a hard test for autism, we must rely on observation and discussion to diagnose it. That makes our diagnoses "softer" than we'd like. A person who was diagnosed with mental retardation in one decade might well have been diagnosed autistic the next. Even more confusingly, he could end up with both diagnoses, which really confounds our efforts to evaluate prevalence.

Many people who receive Asperger diagnoses today would not have received any diagnosis thirty years ago. I know because I am one of these people. Is there any evidence that the population of Asperger people is really growing?  I didn't see any, but neither did I see any evidence that it's not. All the numbers are going up.

Some of the questions we study sound funny, but I know them to be serious. For example, one study asked, "Is autism diagnosis contagious?" In fact, the likelihood of a child being diagnosed with autism is much higher if he's in a community that contains other autistic kids. No one is suggesting people "catch" autism from the kids around them, but parents and professionals may well "catch awareness" from the first autistic kid they encounter.

Factors like that, and today's broad public awareness of autism, certainly contribute to the rise in diagnoses.

For many years, we have recognized that one to two percent of the human population has significant developmental disability, such as severe autism or intellectual disability. A much larger percentage of the population has less severe developmental disorders, which include Asperger syndrome, attention deficit and hyperactivity disorder (ADHD) and learning disability. The total affected by these less severe differences is quite large – at least ten percent of the population according to studies of school-age children.

That's a big umbrella, enough to contain the whole autistic population and then some. Is the umbrella growing, or is autism just taking a bigger share?  I wish I knew.(c) 2007-2011 John Elder Robison

Upcoming events March 15-23

Are you near Bordentown, New Jersey?  If so, please join me this Friday, March 16 for
a unique program at Newgrange School. 
I'll be speaking at Valley of Central New Jersey, Ancient Accepted
Scottish Rite, 103 Dunns Mill Road in Bordentown.  Registration is required and there is a fee
for this event.




BE DIFFERENT goes on sale in paperback on Tuesday, March 20.  I'll be on the radio all day doing shows around the country.  




Next I'll be in Milwaukee for a talk sponsored by
Boswell Books.  They have partnered with
Autism Speaks for a 7:00PM event on Thursday March 22 at their 2559 N Downer
Avenue store.  Your ticket gets admission
to the event, a book discount, and makes a donation to Autism Speaks.  I'll talk about Being Different and also answer
questions about the latest research and programs Autism Speaks is funding.  Sign up here.




On Friday March 23 I'll be at Brookline Booksmith in Boston
for a 7PM free talk and book signing.  




After that, I'll be in Kansas City, St Louis, and Chicago.  The following week I'll be speaking in Toronto.




Then I have a two week break before heading to the College of William and Mary in Williamsburg, VA, Towson University just outside Baltimore, and the CDC and Atlanta Consortium Autism Conference in Atlanta.




I do hope to see some of my online friends out on the road.  It's going to be a busy spring!
(c) 2007-2011 John Elder Robison

College Bound in Fayetteville, Georgia

Are you in Georgia, yearning for an autism conference,
unsure which of the many you should attend? 
Tonight, I have the answer.




Please join me at the College Bound Conference in Fayetteville (south of Atlanta) on Saturday, March 2nd  Follow this link for registration and more
information.




This conference comes two days after the Georgia Autism
Conference at the Gwinnett Convention Center (north of Atlanta) where I spoke
last spring.




Some people have written to ask if I will be at the Gwinnett
conference, but I will not.   I know it's
confusing, having two autism conferences days apart in the same city, but there
it is.  It's like being in a park,
finding two dogs, and wondering which one to take home, if either.




When I was a kid in Georgia, we knew all about that kind of
trouble.  Our dogs lived under the porch
for that very reason.




Last year's GA Autism Conference was a huge event, with 750
people in two auditoriums.  I had a great
time, and I was honored to be invited, but the event was too big for much of any
personal engagement.  The College Bound
Conference promises to be a much more intimate affair, with perhaps 100
participants and much more one on one interaction.  If you missed that last year, please join me
next week in Fayetteville.




If you are already planning to come to the Gwinnett
conference, consider staying an extra day to join us as well.  I promise to be colorful, personable, and
possibly insightful.  What else could you
expect from a former Georgia kid, with dogs under his porch?
(c) 2007-2011 John Elder Robison

Un-Diagnosing Asperger's

There has been a loud and increasing outcry about the
proposed redefinition of autism for DSM V.  In that redefinition, autism, Asperger's, and
PDD NOS will be combined to form one diagnostic label of ASD – autism spectrum
disorder.




In my earlier essays on this topic, I suggested that
people's alarm was perhaps unjustified because I could not imagine health care
professionals taking away a diagnosis that was allowing a person to receive
useful treatment or therapy.




Yet that very worry seems to be the propagating rapidly
throughout cyberspace . . . Indeed, that is exactly what may happen, if what
these doctors believe comes to pass:




One psychiatrist (Volkmar) suggested up to 75% of the
Asperger population would not qualify for the ASD diagnosis.




Another doctor (Siegel) said she un-diagnoses 90% of the
Asperger kids who come to her today.




Conspicuously missing from both those statements is the
second part . . . if the psychiatric community proposes to un-diagnose this
large population of PDD NOS and Asperger's, what do they propose to diagnose
them with instead?  Something (I'm
waiting . . .) or nothing?




If the expectation is that these "former Asperger people"
will be diagnosed with something else that will qualify them for a sufficient
level of effective services, it's high time we hear what that new diagnosis
might be.  I have yet to hear of any
"replacement Asperger's" for this population.



There is talk of Social Communication Disorder, but I am not aware of any broad array of services that might be associated with that diagnosis, if indeed it is an expected substitute.




Most people are diagnosed with Asperger's or PDD NOS as
kids.  Once the diagnosis is given, those
kids receive social skills therapy and other help in fitting in.   Everything I hear from the field tells me
the therapies are life changing for the people involved.  When I hear complaints, they usually are that
the level of service is insufficient. 
Conversely, I have never once heard of excessive treatment for
Asperger's.  Are we now proposing to take
those services away from today's Asperger population and others like them in
the future?  What would be the
justification for that?




I can imagine no reason except short term cost savings,
which benefits health insurers and school districts.   While administrators of those organizations lobby from a different perspective, there is a widespread belief that these groups are already failing to deliver what's needed, in terms of support services.  Is the DSM definition being perverted into a tool to save these people money when they are not doing their jobs adequately and effectively now? 



I do understand that the surge in ASD diagnoses has placed a huge burden on the healthcare system and school budgets.  If it's true that a large fraction of ASD kids are improperly diagnosed today, it would stand to reason that the services currently being delivered are not needed.  If so, where is the outcry over waste?  There isn't any, because it's universally accepted among recipients that the services ARE needed.




The concept that a large population, who has a disability
diagnosis today, might lose that diagnosis and access to the resultant services
as a result of DSM changes is both shocking and unprecedented.



When I originally heard about this proposal, my understanding was that the new diagnostic umbrella would cover all those with prior ASD diagnoses. Believing that to be true, I supported the redefinition for the various reasons I've already articulated.  Now, I wonder if it's time to rethink that endorsement.




It seems like the medical and therapeutic community is
sharply divided on this issue.  Many still take the stand that I expected, which is that a kid with an ASD diagnosis today, who benefits from services as a result, should be a kid with an ASD diagnosis in DSM V land.  For those
who believe we would be right to un-diagnose some large percentage of the ASD
population, what would you say to the people you propose to un-diagnose?(c) 2007-2011 John Elder Robison

New Findings on Sensory Overload - a first person perspective

According to a press release I received this morning, new research from Cold Spring Harbor Lab might help explain how a gene mutation
found in some autistic individuals leads to difficulties in processing auditory
cues and paying spatial attention to sound. 




The study found that
when a gene called PTEN is deleted from auditory cortical neurons—the main
workhorses of the brain's sound-processing center—the signals that these
neurons receive from local as well as long-distance sources are strengthened
beyond normal levels.  That's the
first interesting part of the study.




PTEN has been associated with autism in a number of previous
studies. In particular, the PTEN variation has been found in autistic people
with larger heads, and it's suspected as a cause of both additional
connectivity in the brain, and additional brain cell growth.




How many of today's autism population have a PTEN
variation?  Do you?  No one knows. 
It's one of many genes researchers are studying. 




What I do know is that I have abnormal sensitivity to sound,
as do many autistic people. Many of us are easily overwhelmed by noises that go
unremarked by the rest of the population. For some time, I have realized my
excess sensitivity is a two-edged sword. On the one hand, it gave me powerful
insight into music and facilitated my earlier career in rock and roll. On the
other hand, it has often put me at a disadvantage as I'm rendered inoperative
by what others see as ordinary situations.




It's interesting to read that PTEN may be a cause of that
difference. Understanding the genetic foundation of why that happens doesn't do
me much good, but the next part of the study might:




Researchers found that those can be blocked by rapamycin, a
drug currently in use as an immunosuppressant. Rapamycin as an autism therapy
has been studied before and found beneficial in some cases. This study is one
of the first that sheds light on "why" and speaks to a specific mechanism by
which we may be disabled.




Now that I've come to know many people on the spectrum, I
realize I am one of a fortunate few who have significant sensory sensitivity
without being disabled by it.  The vast
majority of autistic people who write about sensitivity do so in the context of
disability. If there were a way to reduce sensory overload, I'm sure a number
of folks on the spectrum today would like to hear about it.




One next step might be to see if rapamycin has the same
effect in humans, and what other unforeseen effects it may have. Rapamycin has
already been tried as a therapy in other contexts relating to autism. A
targeted study that looked at the drug's effect specifically on sensory
overload would be very interesting.




It's possible that this research illustrates a first step on
the path to remediating a specific component of disability for many people on
the spectrum. Much more testing will be needed to really know if that's true,
but it looks like a promising start.




My biggest concern is that rapamycin may have unforeseen
effects elsewhere in the brain, and we won't be able to understand that until
we have conducted a sizeable human trial. We can only do so much by observing
and extrapolating from mice.




An interesting aside is that Dr. Zador's research further
supports the emerging idea that excessive brain plasticity is a key component
of the brain differences that lead to autism. His research premise is that the
PTEN variation causes excess connectivity, and connectivity is a key element of
plasticity. I've written about that idea in earlier posts.




I read a lot of talk in the autism community that questions
why we spend money on genetic research when today's autistic population needs
help now. There is a popular perception that genetic research can only benefit
unborn generations, or even worse, be used as a tool for selective abortion.




Dr. Zador's study shows a clear pathway from a basic genetic
study to a possible therapy for autistic people today, if they suffer sensory
overload issues. It's a perfect example of why this kind of work continues to
be important and needs to be funded alongside all our other efforts in the
autism research arena.




One of the pathways
regulated by the PTEN protein involves shutting down an intracellular enzyme
called mTORC1, which promotes cell growth, among other things…. While Zador is
excited about "this finding that suggests that mTORC1 could be a good
therapeutic target for some cases of PTEN-mediated brain disorders," he is
also keen to further pursue his team's new evidence that cortical
hyperconnectivity could be the "final pathway" by which diverse ASD
genetic pathways lead to a single ASD phenotype. "Using cortical
connectivity as a paradigm for assessing ASD candidate genes could provide
insights into the mechanisms of the disorders and perhaps even give us clues to
formulate new therapeutic strategies," he states.




Dr. Zador's leap from a subtle variation in genetic code to
a specific behavioral aberration represents a brilliant leap of intuition and
reason, backed up with careful lab work. It's the kind of result I hope to see
when I cast my vote for further genetic studies. This work was originally
funded by Autism Speaks and NIH four years ago.




Here's another really fascinating point to ponder. The PTEN
genetic variation has been already associated with certain people with severe
autistic disability and people with tubular sclerosis. Now, by associating PTEN
with auditory sensitivity, we confront the question:  Do people like me have the PTEN difference
too?  No one knows, because that study
has never been done.




I'll just say one more thing in closing. The discovery that
PTEN aberrations can lead to sensory overload, and the pathway by which that
happens stands separate from any question about rapamycin as a therapy. Don't
let worries about a particular drug blind you to the significance of the first
finding.




Other researchers are looking at alternate ways to affect
cortical plasticity in general and even connectivity as described in this study.
 Rapamycin may end up being a therapeutic
answer for some, but it's equally possible that a better therapy will be
developed now that we are beginning to unravel the underlying issues. One day,
autistic people who are disabled by auditory overload may be able to "mute" the
disability, while retaining enough sensitivity to be exceptional.




That, folks, is what the science is all about.(c) 2007-2011 John Elder Robison

Transitions

What do you do, when you reach the end of your last year of
high school? 




For most Americans, these are the options:



You can continue your education at college;
You can take up a trade, either by attending trade school or
by becoming an apprentice;
You can get a job;
You can join the service;
You can hit the road;
You may able to barricade yourself in your parents'
basement;
You can go to jail.



















The rest of your life will be strongly influenced by this
decision.  Contrary to what some people
say, there is no universal answer.  It's
imperative that you make the choice that's optimal for you.




In the education world, this process is called transition,
and it's the focus of several conferences where I'll be appearing this spring
and fall.




For the past decade or two, parents, teachers and counselors
have pushed college as the best answer for any kid who had a shot at
admission.   They cite statistics that
show how much more college graduates earn, and how much better the jobs they
get will be.




Persuasive as that argument sounds, college is not the best
choice for everyone.  One of the most
overlooked choices is the trades. 
Originally, "the trades" meant becoming a skilled blue-collar worker – a
carpenter, electrician, plumber, machinist or mechanic.




Today the range of trade jobs has expanded quite a bit with
the proliferation of high-tech in medicine, mining, and everywhere else work
takes place.  All that high-tech gear
needs to be set up, operated, and kept in working order.  At the same time, there is still opportunity
in traditional lower-tech trades, like forestry or landscaping.




All those trade jobs offer the possibility of good wages for
the workers, and many have the added benefit that a skilled worker can become a
small business owner.  Business ownership
remains one of the surest paths to riches in our society; small business owners
as a group are significantly more affluent than workers in jobs, no matter what
level of education they have.




Even those "low paying service jobs" that pundits love to denigrate
can offer opportunity.  Many chefs and
restaurant owners came up from the ranks of cooks and servers.  For countless others, basic service jobs
provided needed income while the worker was on a path to something different.




No matter how you feel about our government and foreign
policy, the armed forces have been a lifesaver for countless young people.   The GI Bill sent a whole generation to
college.  For others, the Army was hell
on earth.  So it's not for everyone.  Opinions in the autism community seem sharply
polarized.




The remaining options – hitting the road, riding the rails,
holing up in mom's basement, or going to jail . . . . most would agree those
are undesirable.  I'll talk about how you
can avoid those outcomes.




The principal point is – college is not the only good
option.  Indeed, for many, it is not the best
option at all.  Other paths can be
richer, more rewarding, and worthy of respect and consideration.




I'll be talking about transition and my own story at two
important conferences this spring.




The first is next Thursday, February 9, at the Kalahari
Resort in Wisconsin Dells, WI.  You can
register for that conference here  




The second is Saturday, March 3rd at Grace Evangelical Church in Fayetteville,
Georgia.  Fayetteville is southeast of
Atlanta.  Register for that conference here  





(c) 2007-2011 John Elder Robison

What will the new DSM definition of autism mean to us?

There's been a lot of talk about how the upcoming DSM V definition of autism will affect people on the spectrum.  
Last week's news stories really got people talking, especially when one
doctors suggested 75% of today's Asperger population would not qualify for a
diagnosis under the new definitions.




Let me say at the outset, I think that 75% statement is
inaccurate, and a substantial over-reaction to the available data.




Many in the community were already upset at the DSM V
proposal to combine the various autistic conditions under the single category
of autism spectrum disorder.  Any change
in diagnostic terms or definitions is worrisome to those who depend on
receiving diagnostic-specific supports from schools, social service agencies,
or health care providers.




In the following paragraphs, I'd like to look at the
proposed definition of ASD, and then consider what it may mean for those on the
spectrum and their families.




This is the proposed definition of ASD.  For a person to be diagnosed, they must meet criteria
A, B , C, and D.




A.    Persistent
deficits in social communication and social interaction across contexts, not
accounted for by general developmental delays, and manifest by all 3 of the
following:

1.     Deficits in
social-emotional reciprocity; ranging from abnormal social approach and failure
of normal back and forth conversation through reduced sharing of interests,
emotions, and affect and response to total lack of initiation of social
interaction,

2.     Deficits in
nonverbal communicative behaviors used for social interaction; ranging from
poorly integrated- verbal and nonverbal communication, through abnormalities in
eye contact and body-language, or deficits in understanding and use of
nonverbal communication, to total lack of facial expression or gestures.

3.     Deficits in
developing and maintaining relationships, appropriate to developmental level
(beyond those with caregivers); ranging from difficulties adjusting behavior to
suit different social contexts through difficulties in sharing imaginative play
and  in making friends  to an apparent absence of interest in people

B.    Restricted,
repetitive patterns of behavior, interests, or activities as manifested by at
least two of  the following:

1.     Stereotyped or
repetitive speech, motor movements, or use of objects; (such as simple motor
stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).

2.     Excessive
adherence to routines, ritualized patterns of verbal or nonverbal behavior, or
excessive resistance to change; (such as motoric rituals, insistence on same
route or food, repetitive questioning or extreme distress at small changes).

3.     Highly
restricted, fixated interests that are abnormal in intensity or focus; (such as
strong attachment to or preoccupation with unusual objects, excessively
circumscribed or perseverative interests).

4.     Hyper-or
hypo-reactivity to sensory input or unusual interest in sensory aspects of
environment; (such as apparent indifference to pain/heat/cold, adverse response
to specific sounds or textures, excessive smelling or touching of objects,
fascination with lights or spinning objects).

C.    Symptoms must be
present in early childhood (but may not become fully manifest until social
demands exceed limited capacities)

D.         Symptoms together limit and impair
everyday functioning.




As you can see, the ASD definition above is very similar to,
and clearly derived from, the DSM IV definitions it will replace.  Given its similarity, I think it's an
over-reaction to suggest that any large portion of the current diagnosed
population would "lose their diagnosis." 
People with Asperger's or PDD NOS will have to obtain a new diagnosis if
the depend on it for services, but I don't think that will be a problem.




The primary mission of any clinician is to help others.  That belief make me think those clinicians
will be looking at today's Asperger and PDD NOS people and thinking, "What do I
have to do to help this person?"  Most
clinicians are on our side, after all.  




All of the criteria remain subjective.  That means clinicians still have great
latitude in defining phrases like "symptoms impair everyday functioning."  A clinician who diagnosed a person with an
ASD condition under DSM IV is not at all likely to withdraw that diagnosis
today.  I do think there will be
upheaval, schools and others send people with Asperger or PDD NOS diagnoses are
sent back to clinicians for re-evaluation under the new guidelines. 




I have no doubt that process will be troublesome, costly,
and time consuming but I doubt very much it will result in people who had a
disability diagnosis coming out with nothing.  





A doctor who thinks you or your son is on the spectrum is
not likely to revise that opinion, just because the wording of the definition
changes.  My experience of human nature
reassures me on that point, even though I know insurers and school districts
are pushing in the other direction.




In my opinion, the biggest change in the new definition is
the addition of a severity grade.  Here
is how they define level 1, the least severe affect:




A - Without supports in place, deficits in social
communication cause noticeable impairments. 
Has difficulty initiating social interactions and demonstrates clear
examples of atypical or unsuccessful responses to social overtures of
others.  May appear to have decreased
interest in social interactions.




B - Rituals and repetitive behaviors (RRB's) cause
significant interference with functioning in one or more contexts.  Resists attempts by others to interrupt RRB's
or to be redirected from fixated interest.




Once again, the definition is very open-ended and
subjective.  For example, the word
"supports" could be taken to mean many different things.  Once again, I think clinicians will retain
wide diagnostic latitude.  To me, that
suggests that most people who have a diagnosis, will have an ASD diagnosis
under the new definition.  And a kid who is
diagnosed on the spectrum today, will still be ASD next year when this change
takes effect.




I do understand why people express concern, when they say
words like that might be interpreted very narrowly for the purpose of reducing
the number of individuals diagnosed.  However,
I do not think that was or is the intent of the framers of the ASD definition.




All that aside, I do think people who receive services face
a real threat of interruption or disruption when this change takes place.  Not because they "won't have a diagnosis," or
for any clinical reason.  Rather, I think
people with autism are at risk to lose services because ignorant, ethically
challenged, or financially pressured bureaucrats will use the diagnostic
evolution as justification for changes that may benefit some other group at our
expense.  Obviously, not every government official or service provider will think this way, but some surely will, and we need to both be on guard and continue to raise awareness about this risk.



For this is the real threat to the autistic population, from the DSM changes.  "Losing a diagnosis" is a red herring.




Many school are already using any loophole they can find to
escape IEPs and their obligations under the spirit of the law.  State social service agencies can be even
worse.  A big change like this could make
that kind of treatment easier for them to justify and perpetrate, and that is
bad.




For that reason, I urge all of you to speak up before your
government officials, school boards, and elsewhere to make sure they know that
a change in diagnostic wording does not in any way change our need for support.  Even if the diagnostic codes numbers change, their obligation to provide educational, social, medical and therapeutic services should remain unchanged.  If the government chooses to require people to obtain a new diagnosis to suit the new DSM, I absolutely feel it is their agencies' responsibility to pay for same, and continue services until obtained.  That is a point we must make very clear - lest this because a barefaced resource grab when the change takes effect.




I look forward to the day we have solid tests for autism,
but even then, I am sure the fight with social services and schools will
continue.  Because it all comes down to
money, in the end.  Our various government departments  - both State and Federal - have not yet made the funding choices to fully support the population we have identified today, let alone the
folks who are yet to be diagnosed.





(c) 2007-2011 John Elder Robison