New Theory Of Autism Suggests Symptoms Or Disorder May Be Reversible

Tue Apr 7 11:43:07 PDT 2009

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Tuesday, April 7, 2009
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	RESEARCH
New Theory Of Autism Suggests Symptoms Or Disorder May Be Reversible

Why Fever Helps Autism: A New Theory

RESOURCES
Microsoft Funds Mobile-Phone Software For Autistic Children

California Clinic To Treat Adult Autism

ASA Joins MedicAlert To Offer - 24-Hour Protection System

PEOPLE
A Roller Coaster to Acceptance of a Son’s Autism

MEDIA
On EXTRA Jenny McCarthy and Dr. Jerry Kartzinel

In New Book, Texas Mom Says Her Intensive Therapy Program Helped Son
Overcome Autism

LETTERS
Insurance for Ohio Families

COMMENTARY
Are We Winning the Vaccine-Autism War? 	

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Political Discussion Forum Heats Up As Vaccine Link To Autism Question
Spreads

An email discussion list has been created in response to the growing
interest in the environmental causes of autism -- now 2,300 subscribers.
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      PUBLICATION NOTE: There has been a slight interruption of publication
of the SAR due to, what else, pressing matters related to family autism –
hopefully addressed by now.  Readers will not miss any important information
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– Lenny Schafer

RESEARCH

New Theory Of Autism Suggests Symptoms Or Disorder May Be Reversible

is.gd/qavZ

      ScienceDaily - Scientists at Albert Einstein College of Medicine of
Yeshiva University have proposed a sweeping new theory of autism that
suggests that the brains of people with autism are structurally normal but
dysregulated, meaning symptoms of the disorder might be reversible.
      The central tenet of the theory, published in the March issue of Brain
Research Reviews, is that autism is a developmental disorder caused by
impaired regulation of the locus coeruleus, a bundle of neurons in the brain
stem that processes sensory signals from all areas of the body.
      The new theory stems from decades of anecdotal observations that some
autistic children seem to improve when they have a fever, only to regress
when the fever ebbs. A 2007 study in the journal Pediatrics took a more
rigorous look at fever and autism, observing autistic children during and
after fever episodes and comparing their behavior with autistic children who
didn't have fevers. This study documented that autistic children experience
behavior changes during fever.
      "On a positive note, we are talking about a brain region that is not
irrevocably altered. It gives us hope that, with novel therapies, we will
eventually be able to help people with autism," says theory co-author Mark
F. Mehler, M.D., chairman of neurology and director of the Institute for
Brain Disorders and Neural Regeneration at Einstein.
      Autism is a complex developmental disability that affects a person's
ability to communicate and interact with others. It usually appears during
the first three years of life. Autism is called a "spectrum disorder" since
it affects individuals differently and to varying degrees. It is estimated
that one in every 150 American children has some degree of autism.
      Einstein researchers contend that scientific evidence directly points
to the locus coeruleus–noradrenergic (LC-NA) system as being involved in
autism. "The LC-NA system is the only brain system involved both in
producing fever and controlling behavior," says co-author Dominick P.
Purpura, M.D., dean emeritus and distinguished professor of neuroscience at
Einstein.
      The locus coeruleus has widespread connections to brain regions that
process sensory information. It secretes most of the brain's noradrenaline,
a neurotransmitter that plays a key role in arousal mechanisms, such as the
"fight or flight" response. It is also involved in a variety of complex
behaviors, such as attentional focusing (the ability to concentrate
attention on environmental cues relevant to the task in hand, or to switch
attention from one task to another). Poor attentional focusing is a defining
characteristic of autism.
      "What is unique about the locus coeruleus is that it activates almost
all higher-order brain centers that are involved in complex cognitive
tasks," says Dr. Mehler.
      Drs. Purpura and Mehler hypothesize that in autism, the LC-NA system
is dysregulated by the interplay of environment, genetic, and epigenetic
factors (chemical substances both within as well as outside the genome that
regulate the expression of genes). They believe that stress plays a central
role in dysregulation of the LC-NA system, especially in the latter stages
of prenatal development when the fetal brain is particularly vulnerable.
      As evidence, the researchers point to a 2008 study, published in the
Journal of Autism and Developmental Disorders, that found a higher incidence
of autism among children whose mothers had been exposed to hurricanes and
tropical storms during pregnancy. Maternal exposure to severe storms at
mid-gestation resulted in the highest prevalence of autism.
      Drs. Purpura and Mehler believe that, in autistic children, fever
stimulates the LC-NA system, temporarily restoring its normal regulatory
function. "This could not happen if autism was caused by a lesion or some
structural abnormality of the brain," says Dr. Purpura.
      "This gives us hope that we will eventually be able to do something
for people with autism," he adds.
      The researchers do not advocate fever therapy (fever induced by
artificial means), which would be an overly broad, and perhaps even
dangerous, remedy. Instead, they say, the future of autism treatment
probably lies in drugs that selectively target certain types of
noradrenergic brain receptors or, more likely, in epigenetic therapies
targeting genes of the LC-NA system.
      "If the locus coeruleus is impaired in autism, it is probably because
tens or hundreds, maybe even thousands, of genes are dysregulated in subtle
and complex ways," says Dr. Mehler. "The only way you can reverse this
process is with epigenetic therapies, which, we are beginning to learn, have
the ability to coordinate very large integrated gene networks."
      "The message here is one of hope but also one of caution," Dr. Mehler
adds. "You can't take a complex neuropsychiatric disease that has escaped
our understanding for 50 years and in one fell swoop have a therapy that is
going to reverse it — that's folly. On the other hand, we now have clues to
the neurobiology, the genetics, and the epigenetics of autism. To move
forward, we need to invest more money in basic science to look at the genome
and the epigenome in a more focused way."

      NOTE: See related article from Time Magazine, below. –ed.

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• • •

Why Fever Helps Autism: A New Theory

By Jeffrey Kluger for Time CNN.  is.gd/rcR1

       The autism wars go on and on, and the debates go round and round. Is
the number of afflicted kids climbing or are we just overdiagnosing the
condition? If mercury in vaccines isn't the culprit (the metal has been
removed from nearly all of them), then it must be environmental toxins. But
if that's so, why aren't we all showing symptoms? Too often, what's lost in
all the finger-pointing over what's to blame for the problem is the salient
question of how to fix it. A paper just published in the journal Brain
Research Reviews is taking a stab at that, suggesting a brand-new strategy —
one that focuses on a very particular part of the brain The brain region
that drew the attention of the authors is known as the locus coeruleus, a
small knot of neurons located in the brain stem. Not a lot of high-order
processing goes on so deep in the brain's basement, but the locus coeruleus
does govern the release of the neurotransmitter noradrenaline, which is
critical in triggering arousal or alarm, as in the famed fight-or-flight
response. Arousal also plays a role in our ability to pay attention — you
can't deal with the lion trying to eat you, after all, if you don't focus on
it first. And attention, in turn, plays a critical role in such complex
functions as responding to environmental cues and smoothly switching your
concentration from one task to another. Those are abilities kids with autism
lack.
      Certainly, many other parts of the brain govern concentration and
attention, but the locus coeruleus does one other thing too: it regulates
fever. Generations of parents of autistic kids have reported that when their
child runs a fever, the symptoms of autism seem to abate. When the fever
goes down, the symptoms return. In 2007, a paper in the journal Pediatrics
reported on that phenomenon and confirmed that, yes, the parents'
observations are right. What no one had done before, at least not formally,
was tie it to the locus coeruleus — that is, until Drs. Dominick Purpura and
Mark Mehler of the Albert Einstein College of Medicine published the idea
this week.
      "It wasn't an experiment; it was more of a eureka moment," says
Purpura. "We came to the conclusion that there could only be one system that
would both ameliorate the effects of autism and govern fever."
      It's not often that a mere flash of insight — as opposed to a formal,
controlled study — commands much space in a medical journal, and Purpura and
Mehler readily concede that a good deal of empiricism will have to be
applied to their theory before it can become anything more than that. Still,
they're convinced that the idea deserves attention. If the locus coeruleus
is indeed malfunctioning in autism, the problem could involve hundreds or
even thousands of genes. The researchers are careful to avoid the shooting
war over what damaged those genes, suggesting that environment and toxic
chemicals — but not vaccines — may have a role. They also, tellingly, think
stress is involved.
      Stress is thought to have a significant impact on the ability of the
locus coeruleus to regulate noradrenaline properly, and Mehler and Purpura
cite an improbable 2008 study published in the Journal of Autism and
Developmental Disorders showing that mothers who lived through a hurricane
during their pregnancy — particularly at the mid-gestational point — had a
greater likelihood of giving birth to an autistic child than other women.
"What would be involved here would be the mother's level of [the stress
hormone] cortisol," says Purpura. "Between fetus and mother, the placenta
acts as a very good barrier for maternal cortisol, except when the stress is
extreme."
      In theory, that blast of stress chemistry could alter the development
of the fetal locus coeruleus, though Purpura is quick to point out that the
study showing how cortisol can make it through the placenta was conducted in
animals, not humans. Nonetheless, one day after their article in Brain
Research Reviews was published, the journal Psychoneuroendocrinology
published a study linking cortisol imbalance to Asperger's syndrome, a
condition along the autism spectrum.
      The question is, How can any of this be used to help autistic kids?
Nobody recommends inducing fevers to kick-start the locus coeruleus, since
that could lead to all manner of side effects and other ills. Instead,
Mehler and Purpura believe the likeliest answer is in medications that
target noradrenaline brain receptors. "First, we should look at the
signaling pathways in the region of the brain involved," Purpura says. "Then
we could look at treating the receptor sites with some kind of
pharmacotherapy." For once, the step that's missing from a proposal is the
one that involves shouting about what's to blame.

• • •

RESOURCES

Microsoft Funds Mobile-Phone Software 
For Autistic Children

      By Todd Bishop.
www.techflash.com/microsoft/42348212.html

      With financial and technical support from Microsoft, university
researchers are developing software for mobile phones that uses pictures to
help autistic children communicate. The software, available for download
is.gd/rfDF under an open-source license, lets kids form visual sentences by
touching the phone's screen to select pictures and move them around.
      The program is being developed by Gondy Leroy of Claremont Graduate
University and Gianluca De Leo of Old Dominion University, with funding from
Microsoft's External Research Group. It takes advantage of the established
Picture Exchange Communication System, which is more commonly used with
laminated paper cards.
      Microsoft is publicizing the application in conjunction with World
Autism Awareness Day. But people with iPhones or BlackBerries are out of
luck, for now: The application works only on Windows Mobile devices.

• • •

California Clinic To Treat Adult Autism

By Carrie Peyton Dahlberg in the Sacramento Bee.  is.gd/relv

      For years, Dr. Michael Chez has treated children with autism. And for
years, he has watched them grow toward an uncertain future.
      He describes a glaring gap that spans everything from social services
to medical care as autistic children become adults.
      "There's really no organized structure for what you do with adults
with autism," Chez said. "We don't know a lot about how these people age.
      "Will they have more diabetes, heart disease, ulcers?"
      And what long-term side effects might they suffer from medications
they've taken since early childhood? Hoping to fill treatment and research
gaps, Chez and colleagues at the Sutter Neuroscience Institute are launching
what may be the region's first clinic for adults with autism.
      "We're very excited to hear they have the idea. 
 It's really needed,"
said Dr. Ron Huff, director of clinical and intake services at the Alta
California Regional Center, which helps funnel care to people with
developmental disabilities in 10 counties, including Sacramento.
      The face of autism, a neurodevelopmental disorder that interferes with
communication and social skills, has long been a face of youth.
      With autism diagnoses increasing, researchers have focused on trying
to find the cause, and trying to figure out which therapies can best help
young children while their brains are still developing.
      Treatment has been aimed at teaching children to understand language
better, grasp facial expressions or pick up on other people's emotions.
      Adult autism has drawn little attention – partly because it once was
scarce.
      When Chez was in medical school in the 1980s, he was taught to expect
autism in about one child in 10,000. Now it's about one in 150.
      That means that the majority of people with autism today haven't grown
up yet – and little is known about what their lives will be like when they
do.
      "Most of the people with autism in California are 3 to 18 years old,"
Huff said. "In another five, another 10, another 15 years, all those kids
are going to be adults or well into adulthood."
      There is relatively little in medical journals about the needs of
autistic adults, said Chez, medical director of pediatric neurology at the
Sutter Neuroscience Institute.
      Services can be scanty. There's "a really big, crying, unmet need" for
vocational programs, said Marjorie Solomon, a psychologist and University of
California, Davis, professor. Solomon is studying learning in adults with
autism.
      "With young adults and adults, you want them to be able to live
independently if possible; you want them to have jobs if possible," Solomon
said.
      As many as half the people with autism also have some level of mental
retardation. But there is speculation the numbers may be skewed because IQ
tests can rely heavily on language skills. And even highly intelligent
people with autism-related disorders can struggle at work because they miss
critical social cues, Solomon said.
      "Think about the vicissitudes of office politics. If you're not good
at picking that up, you're in trouble," she said.
      Susan Bacalman, a clinical social worker who runs a support group for
autistic adults at UC Davis' MIND Institute in Sacramento, said the need for
support is so great that "my group is a drop in the bucket."
      Bacalman regularly gets calls from people looking for psychiatrists
and therapists familiar with autism or Asperger syndrome – a form of autism
in which linguistic and cognitive development are normal but children lack
social and communications skills.
      "I haven't found anybody who specializes in this area," she said, so
the new clinic could be a "fabulous" resource.
      The Sutter Transition for Autism and Neurodevelopmental Disorders
(STAND) Clinic will start modestly, according to Chez and Dr. Shawn Kile, a
psychiatrist and neurologist who will help direct the clinic.
      In May, it will be held once a month at an office in Sutter's Cancer
Center at 2800 L St. Doctors hope to work up quickly to twice a month, and
then perhaps more.
      At first, the clinic will focus on 18- to 22-year-olds, because it is
a time of transitions – from pediatric to adult care, possibly from home to
some kind of assisted living.
      The STAND Clinic will accept all insurance coverage, including
Medi-Cal, and will treat ongoing neurological and other problems common to
people with autism, including digestive and sleep disturbances.
      It will also start building a database to help study autistic adults,
and doctors plan to apply for private and federal research grants.
+ Read more: is.gd/relv

•  Autism Medical Treatment Center link is.gd/rehe

• • •

ASA Joins MedicAlert To Offer - 24-Hour Protection System

is.gd/rfkh

      PRNewswire - Autism Society of America (ASA), the leading grassroots
autism organization and MedicAlert, a leader in providing identification and
emergency medical information services, have teamed up to provide a 24-hour
comprehensive protection system for individuals on the spectrum and their
families through the MedicAlert(R) + Safe and Sound(R) program.
      "We are delighted by our new relationship with ASA" said Dr. Martin
Kabat, President and CEO of MedicAlert. "MedicAlert was originally founded
to protect children in times of medical emergencies and we believe this
program goes right to the heart of our mission and history. ASA also has a
history of outstanding efforts to advocate for children and adults with
autism; therefore we are honored to have the opportunity to work in
partnership with them."
      The MedicAlert + Safe and Sound program will provide comprehensive
services that can safeguard and identify individuals with autism in an
emergency. Each individual enrolled in the program will be provided with a
personalized medical ID and wallet card that provide emergency responders
with identification information, and details on any critical medical
conditions or life-threatening allergies. All calls to the 24/7 hotline are
answered by MedicAlert staff who provide identification and vital medical
information to first responders.
      The MedicAlert + Safe and Sound program also ensures that designated
family members will be notified if an individual requires emergency medical
treatment in a caregiver's absence. Through the program, parents and
caregivers will have the reassurance that any time a lost person wearing a
MedicAlert ID has been located or rescued, MedicAlert will contact them
immediately.

Website: www.autism-society.org/
Website: www.medicalert.org/

• • •

PEOPLE

A Roller Coaster to Acceptance of a Son’s Autism
www.nytimes.com/2009/04/07/health/07case.html

      By Annie Lubliner Lehmann in the NY Times.

      When my husband and I were told that our son Jonah’s autism was
“untreatable,” we made up our minds to prove the experts wrong.
      That was 22 years ago.
      We were young and energetic, and the developmental gap between
3-year-old Jonah and his peers, while obvious, was not glaring.
      With no other children to care for at the time, we made helping Jonah
the focus of our lives. Every exchange would become a lesson, every
experience a tutorial.
      Jonah cared most about food (and still does), so I’d go to the grocery
store with a list and an agenda, hoping to use that passion to teach him
essential concepts. I would follow his gaze and point out colors (red apple)
and shapes (round cookie).
      When he turned away from such lessons, despite our most animated
efforts, we tried everything else we could think of. Nothing was too
difficult or too expensive. We gave him vitamins and restricted his diet. We
introduced communication boards and arranged sensory integration therapy. We
had him wear headphones to normalize his hearing and tried other snake-oil
treatments no thinking person would consider.
      But each hope was followed by disappointment. We might as well have
been chasing butterflies with a torn net.

      By the time Jonah reached his teens, we were worn out and frustrated,
not very far from where we’d started. We faced the specter of hopelessness
and a plethora of unanswerable questions.
      How different was Jonah from other children with autism? Would he have
been better off had we not tried all that we did? Or would getting off the
interventional roller coaster mean that we had given up? Though we had been
desperately trying to teach him, we had to concede that Jonah was no
student. What we wanted him to do had little to do with what he did. If he
didn’t want to do something, he would drop to the ground and refuse to
budge.
      So we decided to back off and began taking cues from him.
      We did the same activities as in the past, but without a checklist of
goals. Until then, he had never been able to enjoy the sensory pleasures of
his beloved food magazines without our subjecting him to a monologue about
what he was looking at. Now he was finally free to enjoy things for their
own sake.
      Not long ago, I came across a basement copy of “Cinderella.” It
reminded me of a time when he was 5, when I last tried to read it to him.
Well, not read, exactly; Jonah has always had a low tolerance for
traditional reading, and stories must be sung or recited rhythmically.
      As I sang “Cinderella,” he rolled on the floor, seemingly oblivious to
the story. Still, I clung to the idea that I might be able to engage him, so
I left a sentence for him to complete.
      “The clock struck 12,” I sang off key, “and Cinderella ran down the
palace steps, leaving behind a glass ... ."
      He continued rolling while I waited to hear him say “slipper."
      At last he finished the sentence for me. “Of milk,” he said.
      I smiled, and I’m smiling still. For Jonah had made a student of his
teacher. I would never again be able to read or think of “Cinderella”
without seeing a tumbler of milk on the palace steps.
      Jonah turned 25 last fall, and when I look at him I can’t help
wondering if the past years weren’t some heaven-directed scheme meant to
humble us and teach us the value of acceptance. Understanding that we
couldn’t change him had changed us.
      His future, for the most part, is set — in a nearby home with a caring
staff — and I am grateful that he has some of the same things I want for my
other two children: love, safety, physical comfort and access to favorite
activities.
      He remains a man of very few words. But though it took us years, we
have finally learned that there was something to hear in his silence.
      Annie Lubliner Lehmann, a writer in Michigan, is the author of “The
Accidental Teacher: Life Lessons From My Silent Son."

• • •

MEDIA

On EXTRA Jenny McCarthy and Dr. Jerry Kartzinel

      The green vacciners discuss their new book Healing and Preventing
Autism and continue to stir up controversy. About 3 minutes.

is.gd/rdFf      

• • •

In New Book, Texas Mom Says Her Intensive Therapy Program Helped Son
Overcome Autism

By Jessica Meyers, The Dallas Morning News. is.gd/rfhu

      The twiggy boy who greets strangers at his Cedar Hill home with a
handshake and an impish grin bears no resemblance to the toddler who shied
away from contact, screamed when he had to walk down the stairs and spent
hours staring at the ceiling fan.
      After her son Roman, now 7, was diagnosed with autism, Elizabeth Scott
designed a treatment plan and worked with him 10 hours a day to overcome the
disorder.
      Roman Scott's cheerfully innocuous disposition belies the whirlwind
he's stirring in autism circles. He's the subject of his mother's book,
which claims he overcame the disorder after her intensive 2 ½ -year training
program. Raindrops on Roman was released this month in conjunction with
Autism Awareness Month.
      On one level, Elizabeth Scott's account has stoked existing
controversy among autism experts who question whether situations like
Roman's are a promising development or a case of false hope. But it also
reveals how the state's limited services have forced parents into the
unwitting role of therapist, caretaker and healer.
      Texas is "on the bottom of the totem pole in terms of resources," said
Michelle Guppy, who runs Texas Autism Advocacy, an online network intended
to help parents navigate the state's bureaucracy.
      Her 15-year-old autistic son waited eight years before he received
services from the state. By that time, the family had gone $60,000 into debt
and had yanked him out of therapy.
      "I could help one son now and that takes away college for the other
and I couldn't do that," said Guppy, who applauds the book's inspirational
tone and instructive suggestions. "Who knows – he could have been one of
those recovered kids."
+ Read more: is.gd/rfhu

• • •

LETTERS

Insurance for Ohio Families

      I just met with a key House member helping us get HB 8 through.  Here
is what we need to do right away.  It needs to be done between now and next
Friday 4/17!   
      1.)  Find out who your State  Representative is - click on this link
and enter your home address to Find My Legislators - **Autism Votes **
is.gd/rdBC
      2.)  Get their contact information once you find out who that person
is.
      3.)  Call your Rep and set up an appt to go talk to them.  They are
back in their/your home district now.  They may not have an office in their
district so arrange to meet them wherever they want to meet or have a place
in mind. 
      4.)  When you meet with them talk about your personal story and why
you need/want this bill to pass.  Make it personal.  Use the FAQ attached
here if you want to.
      5.)  If your State Representative is a Republican Member - Please make
every effort to meet with them!  It is critical that we get as many
Republicans on board in the House as possible.  It is a priority with the
Democrats, as they have made it a top 10 priority bill and they want to get
it through. 
      6.)  Let me know what your Representative says when they meet with you
or if you talk to them.  Please make sure you ask them "Will you support HB
8?", and get an answer from them.    I want everyone to know that our
opponents are fast at work trying to defeat us!  We must not let that
happen.  It is up to all of us to fight back.  We are organized, effective
and united if each of us does their part!   Please take the time to call and
meet with your State Representative.  It is important for all us!   Thank
you all for your help.
        -Doug Krinsky, Father of Michael Krinsky Parent Volunteer - Autism
Speaks, Chapter Advocacy Chair (CAC) Ohio

• • •

COMMENTARY

Are We Winning the Vaccine-Autism War?

      By Kent Heckenlively, Esq. on the ageofautism.com. is.gd/rfH2

      In light of the $75 million stripped from the Combating Autism Act of
2006 to study environmental contributions to autism and our public losses in
the Vaccine Court I want to give voice to a question which keeps bubbling to
the surface despite my recent pessimism.  Are we actually starting to win
the vaccine-autism war in the eyes of the public?
      The Larry King show of April 3, 2009 was a watershed moment for our
community in which the host put us on an equal footing with that part of the
medical community which even to this day denies there is an autism
“epidemic.”  The best of the medical community was represented by Dr.
Bernadine Healy, former director of the National Institute of Health who
calmly expressed the frustration of many parents that the safety studies on
vaccinated and unvaccinated children have not been done and that the
question of whether vaccines contribute to autism is far from closed.  I was
also pleased that in the poll conducted on Larry’s web-site after the show,
asking the question of whether autism can be “cured” was a 50-50 split.
That's an enormous sea-change of public opinion since the medical community
claims autism cannot be “cured.”  The ranks of the rebels are growing.
+ Read more: is.gd/rfH2

      Note: The opinions expressed in COMMENTARY are those of the author and
do not necessarily represent the views of the Schafer Autism Report.

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