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NEWS
Is the U.S. Prepared for a Growing Population of Adults With Autism?
Andrew Wakefield Responds to the Current Measles Outbreak for the First
Time
CDC Whistleblower Who Admitted Covering Up MMR Vaccine Links to Autism
Granted Immunity, Will Testify
RESEARCH
Protective Brain Protein Reveals Gender Implications For Autism,
Alzheimer's Research
Advanced 3-D Facial Imaging May Aid In Early Detection Of Autism
Study Finds Saliva Differences in Autistic Kids
Why Some Kids Are Born Autistic
Study Of Siblings With Autism Reveals Surprising Results
Study Downgrades Autism Gene's Effects To Rare Glitches
Seven Genes Tied To Intellectual Disability Found
Study Finds No Link Between Induced or Augmented Labor and Autism
TREATMENT
The Coming Boom In Brain Medicines
Core Symptoms of Autism Improved After Vitamin D Supplementation
Review: Amazing Stories of the Brain’s Power To Heal
Anti-Inflammatory Mechanism Of Dieting And Fasting Revealed
J&J Hid Risperdal Risks of Boy Breast Development, Jury Told
Medical Marijuana For Children With Developmental And Behavioral
Disorders?
Parents May Be Able to Lower Kids’ Autism Risk
CARE
To the Only Person Who Didn’t Leave the Walmart Bathroom When My Son
Needed Help
Protect Autistic Kids With High-Tech Clothing
Eating Healthy Is A Mental Disorder, Scientists Say
The Modern Asylum
Making A Place For Disabled Young Adults To Live, Learn
PEOPLE
The Debate Over an Autism Cure Turns Hostile
EMPLOYMENT
Tearful Dad Does Something Amazing For His Son With Autism
REFERENCE
The Annual Disability Statistics Compendium
97 Research Papers Supporting the Vaccine/Autism Link
What Financial Plans Required For Special Needs Kids?
NEWS
Is
the U.S. Prepared for a Growing Population of Adults With Autism?
More than 50,000 individuals with autism transition into adulthood each
year.
The
Autism CARES Act will devote $1.3 billion over five years to
perform autism research and search for gaps in support.
By Amir Khan usnews.com
Autism is
on the rise: More than 1.5 million people have the condition in the
United States alone. But because the majority of these people are
younger than 22, the country is on the verge of an “autism tsunami”
that could leave thousands without the support they need as they become
adults, according to Autism Speaks, an autism advocacy organization.
“The current system
we have right now is woefully inadequate,” says Angela Lello, director
of housing and community living at Autism Speaks. "There are lots of
long waiting lists. In some states, it can take as long as 10 years to
gain access to [these support] services."
Defined as a
developmental disorder that can impair social, communication and
behavioral skills, autism is a spectrum disorder that can range in
severity from person to person. Some individuals with autism are
considered high-functioning and can live independently requiring
minimal, if any, help. Others, however, may need partial or full
supervision and assistance to navigate even the most basic tasks of
everyday life. "A person who is nonverbal or who has significant
intellectual disability will require substantial support in adulthood,
and fully independent living will not be possible," says Thomas
Challman, medical director and neurodevelopmental pediatrician with the
Geisinger Health System Autism & Developmental Medicine
Institute in Pennsylvania.
Every state offers
Medicaid-funded programs for people with autism, which can be accessed
through each state's Developmental Disability Agency. These services
can include home health aides to help with daily functions such as
dressing and bathing, as well as job placement and housing assistance,
Lello says. Yet, since more than 50,000 individuals with autism
transition into adulthood every year, the support services are already
being outpaced by their demand, she adds.
To help fill this
gap, President Barack Obama recently signed into law the Autism
Collaboration, Accountability, Research, Education and Support Act of
2014. Also known as the Autism CARES Act, it will give $1.3 billion
over five years to fund autism research and detect gaps in support for
children and adults with autism who are aging out of childhood programs
and transitioning into those designed for adults.
“We need to do a
better job of preparing children with [autism spectrum disorder] for
adulthood and provide the help and services they need to reach their
full potential,” said the bill's co-sponsor Rep. Chris Smith, R-N.J.,
on the House floor in June. “The Autism CARES Act tasks multiple
federal agencies to study and report back to Congress on the special
needs of autistic young adults and transitioning youth. In light of the
severity of the aging-out crisis, we must do more – and fast – and
ensure we are providing a comprehensive and thorough review of
available services, and those we need to create."
+Read more.
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•
• •
Andrew
Wakefield Responds to the Current Measles Outbreak for the First
Time
By Stav Ziv
newsweek.com
Dr.
Andrew
Wakefield, center, stands with his wife, Carmel, third from right, as
he speaks to the media after a hearing at the General Medical Council
in London on January 28, 2010. The GMC ruled that Wakefield acted
unethically in researching a link between the measles, mumps and
rubella vaccine and autism. Luke MacGregor/Reuters
Andrew
Wakefield is both revered and reviled. To a small group of parents,
he’s a hero who won’t back down from his assertion that the measles,
mumps and rubella (MMR) vaccine can cause autism.
To most, however,
he’s the man who authored a fraudulent study that has been refuted many
times and was retracted by the journal that published it, a man whose
views carry dangerous consequences for all of us. They will tell you
that the former doctor—stripped of his license in 2010 by the U.K.’s
General Medical Council for ethical violations and failure to disclose
potentially competing financial interests—has derailed public
confidence in vaccination programs that were safely eradicating serious
and highly contagious diseases.
In the wake of the
most recent measles outbreak in the U.S.—which began at the Disneyland
theme park in Southern California in late December 2014 and has since
spread to 17 states and infected more than 100 people—Wakefield defends
his views about the measles vaccine. “The responsibility lies squarely
on the shoulders of those that have been involved in vaccine
policymaking, which is totally inadequate and bordering on dangerous,”
he says. “The government has only themselves to blame for this problem."
The now-retracted
paper that set the MMR-autism dominoes tumbling was published by
Wakefield and a dozen co-authors in The Lancet in February 1998. It
provided case histories for 12 children, exploring incidences of
chronic enterocolitis, inflammatory bowel disease and regressive
developmental disorder—as well as immunization with the MMR vaccine.
“In eight children, the onset of behavioral problems had been linked,
either by the parents or by the child's physician, with measles, mumps,
and rubella vaccination,” the authors wrote.
Vaccination rates in
the U.K. plummeted after publication of that paper, and the study
helped launch the anti-vaccine movement in the U.S. In a National
Consumers League survey conducted in the U.S. last year, one-third of
parents with children under the age of 18 and 29 percent of adults
overall believe that vaccinations can cause autism.
In the 1980s, the
U.S. Centers for Disease Control and Prevention (CDC) launched efforts
to curb measles outbreaks by increasing immunization rates, says Dr.
Robert Amler, who led the push. The CDC worked with state legislatures
to require every child to provide proof of immunization in order to
enroll and stay in public or private school, and began to see
reductions in measles cases within four or five years. By 2000,
indigenous transmission of measles was stamped out in the U.S.,
according to Dr. Walter Orenstein, chair of the National Vaccine
Advisory Committee and former director of the CDC's National
Immunization Program.
+Read more.
DO SOMETHING ABOUT AUTISM NOW
..
. Read, then Forward
the Schafer Autism Report.
$35 for 1 year - or free! www.sarnet.org
•
• •
CDC
Whistleblower Who Admitted Covering Up MMR Vaccine Links to Autism
Granted Immunity, Will Testify
By Lily Dane
dcclothesline.com
Flashback to late
August 2014: Shocking revelations about alleged CDC misconduct in a
study investigating the link between autism and vaccines have been made
even worse by an active campaign to censor and silence the issue in the
media.
That CDC
whistleblower is back in the news (in the alternative, independent
news, anyway).
We’ll get to why in
a minute.
First, here’s some
background: In 2004, Dr. William S. Thompson worked on a report for the
CDC’s National Immunization Program. That report, which ran in the
“Pediatrics” medical journal, came to the conclusion that there’s no
link between vaccines and autism and that no racial group is more
likely to be damaged by vaccines.
But Thompson said
that he and other CDC scientists intentionally fudged the results,
manipulating the pool of children they analyzed and
limiting the proper
number of African-American children from participating. The authors
limited black children from showing up in the results by excluding
babies without a state of Georgia birth certificate.
Dr. Thompson came
clean during the course of several conversations with Dr. Brian Hooker,
who is a researcher (PhD in Bioengineering) and the father of a
vaccine-injured child.
From Health Impact
News: Dr. Hooker has fought against the CDC for more than 12 years,
using the Freedom of Information Act to try and gather as much data as
he could from the studies that the CDC has published that claim there
is no link between vaccines and autism. He has submitted much of the
results of his own internal investigation of the CDC data on vaccines
and autism to Congress. Congressman Bill Posey has assisted him in
forcing the CDC to comply with many of these requests.
After almost 12
years, his tireless pursuit of finding the truth that the CDC was
hiding paid off, as the CDC finally handed over documents so that Dr.
Hooker could look at the raw data that the CDC used to claim that there
was no link between vaccines and autism. It took some Congressional
pressure from Congressman Bill Posey to get this information.
The mainstream media
scrambled to discredit Dr. Thompson. The few reports that made it to
mainstream news sites were quickly pulled (two of which were on CNN).
Most mainstream sites didn’t touch the story (surprise, surprise), but
an article that was posted on Yahoo! Finance received quite a bit of
attention.
Now, here’s why this
story is back in the news: it is being reported that the Obama
administration has granted Dr. Thompson official whistleblower status
and immunity. This will allow him to testify before Congress about CDC
fraud regarding vaccine safety and to explain the thousands of
documents that have been turned over to congressional representatives,
reports VaxTruth.org.
+Read more.
• • •
RESEARCH
Protective
Brain Protein Reveals Gender Implications For Autism,
Alzheimer's Research
Tel Aviv University study finds a mutated gene is expressed differently
in male and female brains
American
Friends of Tel Aviv University
For parents of
children struggling with autism, the dearth of information is
heartbreaking. Medical professionals are hard put to answer the primary
questions: Who is autistic? What causes autism? What treatments are
available? The situation is similar for Alzheimer's patients and
relatives, who are helpless before the aggressive disease devouring a
sufferer's identity.
A new study by Tel
Aviv University's Prof. Illana Gozes, published in Translational
Psychiatry, may offer insight into the pathology of both autism and
Alzheimer's by revealing that different activities of certain proteins
in males and females cause gender-specific tendencies toward these
diseases. While the three-to-one ratio of autism in boys to girls is
well known, as is the greater number of female Alzheimer's patients,
the reasons for these phenomena are less clear.
According to Prof.
Gozes, "If we understand how ADNP, an activity-related neuroprotective
protein which is a major regulatory gene, acts differently in males and
females, we can try to optimize drugs for potential future therapeutics
to treat both autism and Alzheimer's disease."
Prof. Gozes is the
incumbent of the Lily and Avraham Gildor Chair for the Investigation of
Growth Factors, Head of the Elton Laboratory for Molecular
Neuroendocrinology at TAU's Sackler Faculty of Medicine, a member of
TAU's Adams Super Center for Brain Studies and the Sagol School of
Neuroscience. Research for the study was conducted by graduate students
Anna Malishkevich, Noy Amram and Gal Hacohen-Kleiman, in collaboration
with post-doctoral fellow Dr. Iddo Magen, and staff scientist Dr.
Eliezer Giladi, all of TAU.
+Read more.
• • •
Advanced
3-D Facial Imaging May Aid In Early Detection Of Autism
Screening
could lead to further genetic analysis and advancements in
the study and treatment of the disorders University of Missouri-Columbia
eurekalert.org
Autism is a spectrum
of closely related disorders diagnosed in patients who exhibit a shared
core of symptoms, including delays in learning to communicate and
interact socially. Early detection of autism in children is the key for
treatments to be most effective and produce the best outcomes. Using
advanced three-dimensional imaging and statistical analysis techniques,
researchers at the University of Missouri have identified facial
measurements in children with autism that may lead to a screening tool
for young children and provide clues to its genetic causes.
"We want to detect
the specific facial traits of the face of a child with autism," said Ye
Duan, associate professor of computer science in the College of
Engineering at MU. "Doing so might help us define the facial structures
common to children with autism and potentially enable early screening
for the disorder."
Expanding upon
previous studies using two-dimensional imaging, Duan, working with
Judith Miles, professor emerita of child health-genetics in the MU
Thompson Center for Autism and Neurodevelopmental Disorders at MU, used
a system of cameras to photograph and generate three-dimensional images
of children's faces.
The children
selected were between 8 and 12 years old. One group of children had
been diagnosed with autism by the Thompson Center; the other group
consisted of typically developing children. Researchers photographed
the faces of children using three-dimensional imaging, which allowed
scientists to measure distances along the curvature of the face rather
than in a straight line as had been done in previous tests. Duan then
ran sophisticated statistical analyses to measure minute differences in
the facial measurements of each group.
+Read more.
• • •
Study
Finds Saliva Differences in Autistic Kids
By Rick Nauert PhD
psychcentral.com
Reviewed by John M. Grohol, Psy.D.
New research
suggests a spit test may help to diagnose autism in the future.
Researchers at
Clarkson University and the State University of New York at Plattsburgh
have published the first study showing that children with autism
spectrum disorder have differences in protein levels in their saliva
when compared to typically developing children.
The study was
recently published in the journal Autism Research.
Autism spectrum
disorder currently affects one in 68 children in the United States. For
unknown reasons, the number of people diagnosed with autism is on the
rise.
Currently, an autism
diagnosis is determined from behavioral observations that span several
years as a biological test does not exist.
Development of a
biological test could aid in earlier diagnosis, helping to direct
people with autism to interventions.
The researchers, led
by Clarkson University doctoral candidate Armand Gatien Ngounou Wetie,
studied saliva from six children diagnosed with autism, ages six to 16,
compared to six typically developing children in the same age range.
They used a
technique known as mass spectrometry to measure protein differences in
saliva taken from the two groups.
“We found nine
proteins that were significantly elevated in the saliva of the people
with autism and three that were lower or even absent,” said Alisa G.
Woods, Ph.D., a researcher at both Clarkson University and the SUNY
Plattsburgh Center for Neurobehavioral Health who is one of the
researchers leading the study.
“This is the first
study to identify these changes in saliva, which is a relatively easy
biofluid to obtain for clinical use or research."
The proteins
identified primarily have functions in immune system responses or are
elevated in people with gastrointestinal problems. The scientists also
reported that several of the identified proteins interact with one
another.
“We are the first in
the world who proposed a protein complex as a potential biomarker
signature, which gives us information not only about the proteins,
their relative quantities and their modifications, but also about their
interactions with other proteins,” said Costel C. Darie, a co-lead
author and proteomics expert.
Although researchers
believe the investigation is promising for the eventual development of
an autism diagnostic test, more subjects need to be studied to confirm
the markers are consistently different in people with autism.
+Read more.
• • •
Why
Some Kids Are Born Autistic
newkerala.com
A new study has
claimed that autism genes activate during fetal brain development.
Scientists at the
University of California, San Diego School of Medicine have found that
mutations that cause autism in children are connected to a pathway that
regulates brain development.
Lead researcher
Lilia Iakoucheva, PhD said that the surprising thing they immediately
observed while studying a set of well-known autism mutations called
copy number variants or CNVs, was that different CNVs seemed to be
turned on in different developmental period.
Specifically, the
scientists noted that one CNV located in a region of the genome known
as 16p11.2, contained genes active during the late mid-fetal period.
Ultimately, they identified a network of genes that showed a similar
pattern of activation including KCTD13 within 16p11.2 and CUL3, a gene
from a different chromosome that is also mutated in children with
autism.
Iakoucheva said that
they realized that the proteins encoded by the genes, form a complex
that regulates the levels of a third protein, RhoA. Rho proteins play
critical roles in neuronal migration and brain morphogenesis at early
stages of brain development.
Interestingly, the
RhoA pathway has recently been implicated in a rare form of autism
called Timothy syndrome, which is caused by the mutation in a
completely different gene.
Iakoucheva and
colleagues are planning to test RhoA pathway inhibitors using a stem
cell model of autism.
The research is
published in Neuron.
• • •
Study
Of Siblings With Autism Reveals Surprising Results
By Ivan Semeniuk The
Globe and Mail
Dr.
Stephen Scherer at the Peter Gilgan Centre for Research and
Learning in Toronto, part of SickKids Hospital. Dr. Scherer is leading
an initiative to sequence 10,000 whole genomes from individuals and
families with autism spectrum disorder (ASD). The project's aim is to
help researchers tease out the subtle genetic variations that underlie
different forms of autism, including differences between siblings.
(Mark Blinch)
With symptoms that
can range from missed social cues to severe linguistic and cognitive
impairments, autism spectrum disorder (ASD) has proved a complex
condition for geneticists to get their heads around.
Now the largest
study to date based on the whole genome sequences of siblings with ASD,
together with their non-autistic parents, is throwing a genetic
spotlight on those complexities and yielding some surprises.
Among them: In only
one third of the cases where the autism of one sibling with ASD was
linked to a genetic variant did the other sibling with autism share the
same variant.
At face value, such
a result might seem to defy common sense. Autism is thought to affect
about 1 in 68 children, which means the odds of two siblings having the
disorder for entirely unrelated reasons should be very low.
One possible
explanation is some of the variants the study looked at will prove in
time not to be implicated in autism. Or there could be other
still-hidden inherited factors that the siblings share that may
increase the likelihood of ASD in some way. “Then, if they have another
mutation, they’re pushed across the autism threshold,” says Stephen
Scherer, director of the Centre for Applied Genomics at the Hospital
for Sick Children in Toronto who led the study.
The possibility of
different autism-linked genes coming into play among siblings with ASD
matters for parents trying to choose the right treatments for their
children. Even when outward symptoms are similar, the underlying
genetics factors may call for completely different interventions.
And for families
wondering whether they have more than one child with ASD when one child
has a disorder that has been linked to a genetic variant, it is
probably not enough to simply test to see whether other children in the
family share that particular variant.
“You need to look at
the whole genomes,” Dr. Scherer said. “Two thirds of the time it’s
going to be something different."
+Read more.
• • •
Study
Downgrades Autism Gene's Effects To Rare Glitches
By Jessica Wright
sfari.org
Inherited
risk: A group of Amish children who inherited mutations in
both copies of the CNTNAP2 gene have severe epilepsy and autism. Leon
Ritter / Shutterstock.com
Eight years ago,
researchers found inherited mutations in a gene called CNTNAP2 in a
group of Amish children with autism and epilepsy.
Over the following
two years, the gene shot into prominence as an autism candidate: One
team of researchers found a rare harmful mutation in the gene in one
individual with autism. And others linked common variants in the gene —
present in at least 5 percent of the population — to autism symptoms,
such as language problems and faulty brain connectivity. A mouse model
lacking both copies of the gene is frequently used to represent the
disorder and screen autism drugs.
Now, a new analysis
published 26 January in PLoS Genetics significantly brings down the
gene’s importance in autism: According to the study, rare mutations in
a single copy of the gene are unlikely to be a cause of autism1.
“We can’t rule out
that disrupting one copy of CNTNAP2 contributes to autism, but we can
say that the overall contribution is going to be relatively low,” says
lead researcher Matthew State, chair of psychiatry at the University of
California, San Francisco.
State and his
colleagues looked for CNTNAP2 mutations in 2,704 people with autism and
2,747 controls by sequencing their exomes — the protein-coding swaths
of their genomes. To the researchers’ surprise, they found no harmful
mutations in CNTNAP2 in any of the people with autism2. They did come
across 13 mutations with unclear effects, but found the same number of
mutations in the controls.
“It’s quite clear
that CNTNAP2 association through common variants or through these rare
coding variants that Matt State has looked at can’t be a very frequent
explanation of autism,” says Aravinda Chakravarti, director of the
Center for Complex Disease Genomics at Johns Hopkins University in
Baltimore, who was not involved with the study.
+Read more.
• • •
Seven
Genes Tied To Intellectual Disability Found
newkerala.com
Researchers have
identified seven new genes that can cause X-linked intellectual
disability, a disorder that predominantly affects men and can have
highly variable clinical manifestations.
Mutations of these
genes on the X chromosome lead to various forms of intellectual
disability, the researchers noted.
"In addition to
known disease-related genes, we have discovered seven novel genes as
the cause of X-linked intellectual disability and analysed what
signalling pathways in the cells each protein is involved in," said
Vera Kalscheuer from the Max Planck Institute for Molecular Genetics in
Berlin, Germany.
According to the
scientists, the proteins associated with the newly discovered genes may
also be involved in epilepsy, autism and schizophrenia.
The researchers
analysed 405 families, in which cases of X-linked intellectual
disability occur.
As males only have
one X chromosome and the disease is passed on in a recessive manner,
the disorder mainly occurs in boys.
Women are affected
only if both their X chromosomes carry the defective genes. Women with
one healthy and one mutated X chromosome are usually healthy but have a
50 percent chance of passing the mutated X chromosome on to their
offspring.
Because of the high
variability of the clinical picture, the search for the responsible
genetic defect was, until a few years ago, very tedious.
+Read more.
• • •
Study
Finds No Link Between Induced or Augmented Labor and Autism
By Heather Johnson
business2community.com
Inducing or
augmenting labor with pitocin does not increase the risk of autism
among children, says a new study presented at The Pregnancy Meeting™,
the annual meeting of the Society for Maternal-Fetal Medicine, in San
Diego, California.
Pitocin, a synthetic
form of the hormone oxytocin widely used to start or assist the
progress of labor, is a uterine stimulant that causes uterine
contractions by changing calcium concentrations in the uterine muscle
cells. The drug can also be administered after birth to prevent
postpartum bleeding.
Autism spectrum
disorder (ASD) is a developmental disorder that manifests during the
first three years of life. The disorder is characterized by impaired
social interaction and verbal and non-verbal communication and by
restricted, repetitive, or stereotyped behavior. Autism currently
affects one in 68 children in the United States. Boys are almost five
times more likely to suffer from the disorder than girls.
Health care
professions have previously expressed concerns about the use of
pitocin. Prior research had suggested a potential link between
induction or augmentation of labor and ASD. For example, a study
published in the journal JAMA Pediatrics in October 2013 concluded that
induction and augmentation with pitocin increases the risk of autism.
Now researchers at
Intermountain Healthcare, the Obstetrics and Gynecology Department at
the University of Utah, and the Psychiatry Department at the University
of Utah sought to evaluate whether induced and/or augmented labor is
associated with increased odds of ASD.
To determine a link,
if any, the researchers evaluated the association of ASD in a large
group of Utah births that occurred between 1998 and 2006 using data
from birth certificates and from a registry of autism cases in the
state (Utah Registry of Autism and Developmental Disabilities). The
researchers compared 2,547 children with ASD to 166,283 children
without the disorder.
+Read more.
• • •
TREATMENT The Coming Boom In Brain
Medicines
By Matthew Herper,
Forbes
Yumanity
CEO and co-founder Tony Coles
Tony Coles could
have had any job he wanted in the drug industry. In five years at the
helm of cancer drug developer Onyx Pharmaceuticals he increased its
market cap eightfold by purchasing an experimental blood cancer drug
for $800 million, developing it into a big seller and flipping the
whole company to Amgen for $10.4 billion in October 2013. He personally
made $60 million on the deal. Biotech watchers expected him to start
another cancer company or even command a drug giant like Merck or
Pfizer .
Instead, Coles, 54,
is using his own money to build a Cambridge, Mass.-based startup called
Yumanity that is using yeast, the microbes that help make bread and
beer, to study how misfolded proteins in the brain cause Alzheimer’s,
Lou Gehrig’s disease and Parkinson’s, and to create drugs based on that
knowledge. There’s already interest from Big Pharma. Coles says he
chose to attack brain diseases, not tumors, because the need is so dire
and the science is so fresh.
“We’ve got 50
million people around the world who have these diseases, costing $650
billion a year, and lots of families like mine that have been
affected,” says Coles. “I had a grandmother who died of the
complications of Alzheimer’s disease. I think about my own health as
well.”
See also: Neuroscience Stocks To Consider | Neuroscience Treatments To
Watch
The modern drug business was built on brain medicines: Valium was the
first blockbuster, selling 2 billion tablets in 1978, and Prozac
defined the industry in the 1990s. But stagnant science since then led
many big drug companies, including GlaxoSmithKline , Bristol-Myers
Squibb and AstraZeneca, to flee neuroscience, even as an aging
population promises a dramatic surge in brain disease. In the past five
years the number of drugs being developed by large drugmakers for brain
and nervous system disorders fell 50% to 129, according to
NeuroPerspective, an industry newsletter.
But now, thanks to
scientific advances such as genetic sequencing and new DNA editing
technologies, the industry is in the midst of a dramatic reversal. Last
year investors poured $3.3 billion into firms that are developing drugs
for brain-destroying or psychiatric illnesses, more than in any of the
last ten years, says NeuroPerspective. Some big drug companies,
including Johnson & Johnson, Roche and Novartis, are finding
ways to reinvigorate their efforts. New medicines for severe
depression, psychosis and schizophrenia could reach the market within
the next few years, and treatments for Alzheimer’s, Parkinson’s and
some forms of autism are a real possibility, too.
“I do think that
it’s early days. There has been a fair amount of overpromising in
neuroscience drug discovery,” says Ryan Watts, director of neuroscience
at Roche’s Genentech division. “We have to understand there are going
to be a large number of failures and little incremental victories that
will start to build, and then you’ll see things cracking open.”
It will still take years for neuroscience to metamorphose from a
backwater into a hotbed of innovation, but it’s happening. Mark
Fishman, the head of research at Novartis, puts it bluntly: “We’re
revolutionizing the field.”
+Read more.
This
News Digest
is made possible by the paid support of
Individual Members of
the Autism Community
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•
• •
Core
Symptoms of Autism Improved After Vitamin D Supplementation
Feiyong Jia, PhD, MDa, et al.,
Department of Pediatric Neurology and
Neurorehabilitation, The First Hospital of Jilin University, Changchun,
China
Abstract
Autism spectrum
disorder (ASD) is a common neurodevelopmental disorder caused by a
complex interaction between genetic and environmental risk factors.
Among the environmental factors, vitamin D3 (cholecaliferol) seems to
play a significant role in the etiology of ASD because this vitamin is
important for brain development. Lower concentrations of vitamin D3 may
lead to increased brain size, altered brain shape, and enlarged
ventricles, which have been observed in patients with ASD. Vitamin D3
is converted into 25-hydroxyvitamin D3 in the liver. Higher serum
concentrations of this steroid may reduce the risk of autism.
Importantly,
children with ASD are at an increased risk of vitamin D deficiency,
possibly due to environmental factors. It has also been suggested that
vitamin D3 deficiency may cause ASD symptoms. Here, we report on a
32-month-old boy with ASD and vitamin D3 deficiency. His core symptoms
of autism improved significantly after vitamin D3 supplementation. This
case suggests that vitamin D3 may play an important role in the
etiology of ASD, stressing the importance of clinical assessment of
vitamin D3 deficiency and the need for vitamin D3 supplementation in
case of deficiency.
• • •
Review:
Amazing Stories of the Brain’s Power To Heal
The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from
the Frontiers of Neuroplasticity By Norman Doidge (Viking)
By Tracy Sherlock,
Vancouver
Sun
Norman
Doidge’s book The Brain’s Way of Healing is about hopeful and
inspiring cases of recovery. Photo: Denise Grant
Norman
Doidge’s latest book, The Brain’s Way of Healing: Remarkable
Discoveries and Recoveries from the Frontiers of Neuroplasticity, is
truly astonishing. It’s a followup to his 2007 book The Brain that
Changes Itself and it focuses on incredible recoveries from physical
illness and injury that happen in the brain.
Doidge is a
psychiatrist, psychoanalyst and a top-notch writer. He lives in Toronto
and is a faculty member at the University of Toronto and at Columbia
University. He has worked as a newspaper columnist, has won awards for
his poetry, and has written a memoir.
It was a series of
literary portraits of exceptional people that led him to write The
Brain that Changes Itself, a book about neuroplasticity.
Neuroplasticity is the concept that the brain can change its structure
and function in response to mental experience.
The Brain’s Way of
Healing has chapters on how to unlearn chronic pain, how to walk off
Parkinson symptoms, how to rewire a brain with light, how a blind man
learned to see, how to deal with the symptoms of multiple sclerosis and
stroke, and how to quiet the brain to help people with dyslexia,
autism, ADHD and other learning challenges. He writes about people who
had been given no hope of recovery, but who, through healing their
brains, do recover.
“It turns out the
brain is not too sophisticated for its own good,” Doidge writes. “This
book will show that this very sophistication, which involves brain
cells being able to constantly communicate electrically with one
another, and to form, and re-form new connections, moment by moment, is
the source of a unique kind of healing."
He uses examples
including the use of sounds played into the ear to treat autism to
light shone on the back of the neck to treat a brain injury. In some
cases, the results are completely astounding and unexpected.
+Read more.
• • •
Anti-Inflammatory
Mechanism Of Dieting And Fasting Revealed
Researchers at Yale
School of Medicine have found that a compound produced by the body when
dieting or fasting can block a part of the immune system involved in
several inflammatory disorders such as type 2 diabetes,
atherosclerosis, and Alzheimer's disease.
In their study,
published in the Feb. 16 online issue of Nature Medicine, the
researchers described how the compound β-hydroxybutyrate (BHB) directly
inhibits NLRP3, which is part of a complex set of proteins called the
inflammasome. The inflammasome drives the inflammatory response in
several disorders including autoimmune diseases, type 2 diabetes,
Alzheimer's disease, atherosclerosis, and autoinflammatory disorders.
"These findings are
important because endogenous metabolites like BHB that block the NLRP3
inflammasome could be relevant against many inflammatory diseases,
including those where there are mutations in the NLRP3 genes," said
Vishwa Deep Dixit, professor in the Section of Comparative Medicine at
Yale School of Medicine.
BHB is a metabolite
produced by the body in response to fasting, high-intensity exercise,
caloric restriction, or consumption of the low-carbohydrate ketogenic
diet. Dixit said it is well known that fasting and calorie restriction
reduces inflammation in the body, but it was unclear how immune cells
adapt to reduced availability of glucose and if they can respond to
metabolites produced from fat oxidation.
Working with mice
and human immune cells, Dixit and colleagues focused on how macrophages
-- specialized immune cells that produce inflammation -- respond when
exposed to ketone bodies and whether that impacts the inflammasone
complex.
The team introduced
BHB to mouse models of inflammatory diseases caused by NLP3. They found
that this reduced inflammation, and that inflammation was also reduced
when the mice were given a ketogenic diet, which elevates the levels of
BHB in the bloodstream.
+Read more.
• • •
J&J
Hid Risperdal Risks of Boy Breast Development, Jury Told
Bloomberg
Johnson &
Johnson, which paid more than $2 billion to resolve a criminal probe
over its antipsychotic drug Risperdal, knew the medicine caused boys to
develop female breasts and failed to alert regulators, doctors and
patients, a lawyer argued.
J&J kept
quiet about research showing Risperdal caused abnormal breast
development in boys to protect billions of dollars in sales of the
drug, an attorney for the parents of an autistic man who developed size
46 DD breasts while on the medicine told a jury Friday. J&J
misled the U.S. Food and Drug Administration about the antipsychotic’s
safety, he added.
“All of you know
something the FDA still doesn’t know and that is the increased
statistical risk of kids on Risperdal” developing abnormal breasts, the
lawyer, Thomas Kline, told jurors during closing statements at a
Philadelphia trial over the drugmaker’s handling of the product.
J&J, based
in New Brunswick, New Jersey, faces more than 1,000 cases over the
Risperdal side effect in state court in Philadelphia. The current case
is the first in which a jury will decide whether J&J and its
Janssen unit are liable for mishandling the medicine.
In 2012, the company
settled the first case to go to trial in Philadelphia over claims
Risperdal caused gynecomastia, or abnormal breast development, and has
settled at least five other cases over allegations involving the drug.
+Read more.
• • •
Medical
Marijuana For Children With Developmental And Behavioral
Disorders?
As medical marijuana
becomes increasingly accepted, there is growing interest in its use for
children and adolescents with developmental and behavioral problems
such as autism spectrum disorders (ASD) and
attention-deficit/hyperactivity disorder (ADHD), according to a review
in the February Journal of Developmental & Behavioral
Pediatrics, the official journal of the Society for Developmental and
Behavioral Pediatrics.
That's despite a
lack of studies showing any clinical benefit of cannabis for young
patients with these disorders -- whereas evidence strongly suggests
harmful effects of regular marijuana use in the developing brain. Scott
Hadland, MD, MPH, John R. Knight, MD, and Sion Kim Harris, PhD of
Boston Children's Hospital write, "Given the current scarcity of data,
cannabis cannot be safely recommended for the treatment of
developmental or behavioral disorders at this time."
"Children with
severe ASD cannot communicate verbally and may relate to the world
through loud, repetitive shrieking and hand-flapping that is very
disruptive to their families and all those around them," comments Dr
Knight, the study's senior author. "So my heart goes out to families
who are searching for something, anything to help their child," he
continues. "But in using medicinal marijuana they may be trading away
their child's future for short-term symptom control."
+Read more.
• • •
Parents
May Be Able to Lower Kids’ Autism Risk
By Alice Park
time.com
Sean
Justice—Getty
Images
With the help of
videos and trained therapists, parents of at-risk kids may eventually
help their toddlers to avoid an autism diagnosis Autism experts still
disagree over a lot of things about the developmental disorder, but
there is one idea that unites most of them — that the earlier the
condition can be diagnosed, and the sooner interventions, from
medications to behavioral therapies, can be tried, the more likely that
child will be to develop normally.
The latest research,
published Wednesday in the journal Lancet Psychiatry, pushes this idea
even further by intervening with one of the youngest group of babies
yet — those who are 7 months to 10 months old. Jonathan Green from the
University of Manchester, in England, and his colleagues say that
teaching parents to get more in tune with the signals coming from
infants who are at high risk of developing autism can change their
babies’ behavior and shift them toward a pattern of more normal
development.
The scientists
focused on a group of 54 families with at least one autistic child.
About 20% of siblings of autistic children end up developing the
disorder themselves, so Green and his team randomly assigned parents of
these babies to either receive a new parent-training program or to get
no additional intervention at all. While previous studies have also
looked at such parenting programs, most have focused on toddlers once
they have been diagnosed with autism, which generally occurs around age
3.
During the training
sessions, which occurred over five months, a therapist visited the home
and videotaped parents interacting with their infants and then analyzed
the behaviors. Rather than assuming the babies would make sounds or
fidget if they wanted something, parents were asked to pay close
attention to the signs their infants were providing, and find ways to
recognize and respond to them so the babies would be more likely to
engage and interact with their parents rather than turn away. After at
least six such sessions, the infants of parents who did this showed
improvements in their ability to pay attention, as well as better
flexibility in shifting their attention from one object to another.
Presumably the plasticity, or flexibility of the developing brain,
especially in the first year of life, is making it possible to redirect
some of the processes that may be veering toward autism.
+Read more.
• • •
CARE
To the Only Person Who Didn’t Leave the
Walmart Bathroom When My Son
Needed Help
By Barbara Carson themighty.com
When your child with
special needs is little and cute, people can be sympathetic. But when
he’s bigger and still getting sick over and over, well, you try not to
bother people. You just smile and pretend everything’s fine. Inside, I
often felt alone.
My younger son is
diagnosed with Down syndrome and autism. He also had a lot of digestive
problems. I made sure he went to the toilet every two hours. Most days
we were lucky. One day, our luck ran out. My nonverbal teenage son and
I were standing in a long check-out line at Walmart when he had an
attack of explosive diarrhea. He was 14 at the time.
I parked my cart to
one side and asked a cashier to watch it for me. I walked my son to the
women’s restroom, about 10 feet away. He was bent over, making little
sounds, indicating he was cramping and in pain. There was a trail
behind him, but I couldn’t stop to clean it up. I had to get my son on
the toilet as quickly as I could. Fortunately, the handicapped stall
was available. Women and girls wrinkled up their noses and moved away
from us. Soon the restroom was empty.
Suddenly, I realized
my diaper bag was in the car, about a quarter-mile away. I made
frequent trips back and forth to the sinks, wetting paper towels,
adding a dash of soap, cleaning my son from top to bottom. I washed out
the bottom half of his t-shirt in the sink and managed to clean his
sneakers, but his pants, underwear and socks were ruined. He couldn’t
wear them. I couldn’t leave him alone while I went out to the car, and
I didn’t have anyone to watch my son. What could I do, wander around
Walmart asking strangers to help? I couldn’t leave my son alone in the
restroom, even for a minute. Staff might call in Child Protective
Services, a real concern for any single parent of a child with special
needs. I felt so helpless. We were stuck in the restroom.
I couldn’t help it;
I started crying. “OK, God, I really need a friend right now. Please
send me someone who cares.” I managed to pull myself together and
soothe my son. He needed me to smile and tell him we’d be just fine. By
now, I knew how easily he picked up on my emotions. Mommy always made
things better, but just then, Mommy didn’t have a clue.
One minute later,
there was a knock on the stall door. A kind, middle-aged woman smiled
at me. “Honey, you look like you need a friend. What can I do?"
+Read more.
• • •
Protect
Autistic Kids With High-Tech Clothing
By Emily Smith
techgadgetcentral.com
High-tech clothing
has recently become one of the more popular branches of wearable
technology as designers as well as tech firms are getting into making
fashionable and useful high-tech clothing items, for various purposes.
So far, most high-tech clothing is designed with sports enthusiasts and
buffs in mind, offering fitness tracking socks, shirts, pants and
undergarments that feed information into a dedicated application. The
medical uses of high-tech clothing can’t be ignored either, as the most
recent clothing line from Independence Day Clothing has just proven.
Independence Day
Clothing was founded by a parent of an autistic child, Lauren Thierry,
in 2014. Lauren emphasized the need for tracking devices that can’t be
removed nor misplaced in the case of autistic children, because her
teenage son Liam tended to wonder off and get lost. Integrating GPS
tracking technology into high-tech clothing is not a new concept, but
each attempt to make the lives of those suffering from illnesses and
their caregivers easier needs to be appreciated and celebrated. Even
though wearable technology nowadays aims to be fashionable and
impressively smart, many big companies forget that the main benefit
from high-tech clothing or another type of wearable technology comes
from its tracking and alerting features that can help out medical
personnel and patients.
An overwhelming 50 %
of children suffering from autism have the tendency to wander, which is
the case with other illnesses like Alzheimer’s, too. High-tech clothing
developed by Lauren’s company aims to counter that tendency, or at
least preventing it from leading to tragic consequences like loss,
accidents or kidnapping. Lauren designed clothes which have hidden
quilted pockets inside in which 2 inch GPS tracking devices can be
placed, inconspicuous to the child wearing the high-tech clothing and
to possible predators. Lauren says that her company is planning on
implementing even smaller sensor into the clothing so that they can
become virtually undetectable by touch or sight.
The benefit of this
type of high-tech clothing is that parents can always keep track of
their children, in case they get lost on their way to school or on a
stroll with their friends. But designing clothes with autistic children
in mind doesn’t just need a security touch to it, rather it needs a
practical one, too. With this in mind, Lauren’s high-tech clothes
aren’t just high-tech, rather they are easy to use by children
themselves. The shirts and pants are the same backward and forward, so
that there’s almost no wrong way of putting them on, which helps kids
handle themselves easily without a parent’s intervention.
+Read more.
• • •
Eating
Healthy Is A Mental Disorder, Scientists Say
inquisitr.com
These days, it seems
that everyone has that one friend who brings their own organic, gluten
free, vegan health food alternatives to the family barbeque. However,
psychiatrists have started diagnosing those who eat an abundance of
health foods as mentally ill.
It is no secret that
Americans are obsessed with food and nutrition, but as more people find
new ways to incorporate health foods into their diet, some are forming
an unhealthy obsession with health food dieting fads. Some are even
developing anxiety over which foods are considered “safe” to eat.
Much like OCD, the
obsession with raw, natural, non-GMO food can become a compulsion that
deprives people of mental stability and nutrients.
Three years ago, 28
year-old Ashley Bailey began a health food diet after suffering from
chronic abdominal pain, digestive problems, and other health related
issues. When Bailey’s health began to improve, she got even more
extreme in her eating habits. After a year, she had eliminated gluten,
grains, dairy, meat, starches, and most fruits from her diet.
“I had extreme
anxiety about everything I ate and became acutely aware of how every
ingredient made my body feel…I broke down crying once because I could
taste so many different flavors, and I didn’t know what they all were
or where the ingredients were sourced."
Bailey had developed
a complex focused on health food diets which she took to dangerous
extremes, depleting her body of much needed proteins and calories. She
said in an interview with CNN that “I called my sister and said, ‘I
think I have an eating disorder.'"
This particular
eating disorder is called “Orthorexia nervosa” by psychiatrists, and is
associated with a pathological obsession with health foods to the point
where such a diet is disruptive to a so-called “normal” lifestyle. Some
may even develop a fear of food, such as vegan food blogger Jordan
Younger, who became sick, stopped having her period, and suffered from
panic attacks while in the grocery store.
+Read more.
• • •
The
Modern Asylum
By Christine
Montross, NYTimes
Opinion
Last month, three
ethicists from the University of Pennsylvania argued in the Journal of
the American Medical Association that the movement to
deinstitutionalize the mentally ill has been a failure.
Deinstitutionalization, they wrote, has in truth been
“transinstitutionalization.” As a hospital psychiatrist, I see this
every day. Patients with chronic, severe mental illnesses are still in
facilities — only now they are in medical hospitals, nursing homes and,
increasingly, jails and prisons, places that are less appropriate and
more expensive than long-term psychiatric institutions.
The ethicists argue
that the “way forward includes a return to psychiatric asylums.” And
they are right.
Their suggestion was
controversial. Critics argued that people should receive treatment in
the least restrictive setting possible. The Americans With Disabilities
Act demanded this, as has the Supreme Court. The goals of maximizing
personal autonomy and civil liberties for the mentally ill are
admirable.
But as a result, my
patients with chronic psychotic illnesses cycle between emergency
hospitalizations and inadequate outpatient care. They are treated by
community mental health centers whose overburdened psychiatrists may
see even the sickest patients for only 20 minutes every three months.
Many patients struggle with homelessness. Many are incarcerated.
A new model of
long-term psychiatric institutionalization, as the Penn group suggests,
would help them. However, I would go even further. We also need to
rethink how we care for another group of vulnerable patients who have
been just as disastrously disserved by policies meant to empower and
protect them: the severely mentally disabled.
In the wake of
deinstitutionalization, group homes for the mentally disabled were
established to provide long-term housing while preserving community
engagement. Rigorous regulations evolved to ensure patient safety and
autonomy. However, many have backfired.
A colleague of mine
who treats severely disabled patients on the autism spectrum described
a young man who would become agitated in the van on outings with his
group home staff. Fearing the man would open a door while the vehicle
was moving, staff members told his family that he would no longer be
permitted to go. When the parents suggested just locking the van doors,
they were told that this infringed on patients’ freedom and was not
allowed.
Group homes have
undergone devastating budget cuts. Staffs are smaller, wages are lower,
and workers are less skilled. Severe cognitive impairment can be
accompanied by aggressive or self-injurious impulses. With fewer staff
members to provide care, outbursts escalate. Group homes then have no
choice but to send violent patients to the psychiatric hospital.
+Read more.
• • •
Making
A Place For Disabled Young Adults To Live, Learn
D.J.
Flaschen and
his mother, Deborah, at 3LPlace Life College Residence. Aram Boghosian
For The Boston Globe
By Bella English bostonglobe.com
Deborah Flaschen, a
former Wall Street investment banker, was 16 when she enrolled at Tufts
University and 20 when she graduated magna cum laude. When her son
D.J., who has autism, turned 17, she started looking around at his
options, but they were alarmingly limited. “There was nothing in
Boston, not a place that I would choose to put him in,” says Flaschen.
The dilemma is one
echoed by families of students with autism who, along with other young
people with developmental delays, age out of services provided by
school districts when they turn 22. Many are ill-prepared to live
independently or hold a job. It is a problem that is expected to
mushroom along with the growing number of children diagnosed with the
disorder.
Lacking an option
she felt comfortable with, Flaschen decided to create her own. The
result: 3LPlace Life College near Tufts in Somerville for young adults
with autism and other developmental disabilities, including Down
syndrome and cerebral palsy. Experts in the field say that the Life
College is the only one of its kind in Massachusetts, combining a
residential and day program under one roof for young adults. With its
ability to offer more comprehensive life-skills training, the new
project underscores both how significant the need is for the students
and how little is generally available.
“Once they turn 22,
there’s no obligation unless the state decides they are eligible for
adult services and that could be anything from full residential to not
much at all,” says Tamar Lewis of Belmont, whose 22-year-old son
recently moved into 3LPlace. “This place is a lifesaver. Most are
either day or residential, not both, and you have to search for each."
Nationwide, only 14
percent of adults with such disabilities have jobs outside a care
facility. In Massachusetts, developmentally disabled adults are less
than half as likely as their peers to be employed at all — and those
who are generally work at minimum wage jobs with no benefits.
+Read more.
• • •
PEOPLE The Debate Over an Autism
Cure Turns Hostile
By Erika Hayasaki
newsweek.com
Jonathan
Mitchell, pictured here walking in his Los Angeles
neighborhood, is an autistic man who feels that a cure for autism is
possible. Mitchell has come under attack from parents of autistic
children who say that he's irresponsible to suggest that autism is a
disease to be cured. To them, people with autism are normal, just on a
different part of the spectrum. Bret Hartman for Newsweek
Jonathan Mitchell
arrives at Boardwalk 11, a Culver City, California, karaoke bar, well
ahead of the Saturday night crowd, takes his usual barstool in the back
and nurses his usual glass of cranberry juice. A woman in heels and
black Lycra leggings is singing Garth Brooks, “Friends in Low Places.”
I'm not big on social graces, think I'll slip on down to the oasis.
Behind the bar table, Mitchell’s hands flap and flail about so softly
most would not even notice his self-soothing fidgeting.
At 59, Mitchell
easily admits that he is lonely. He walks with heavy shoulders, and a
facial expression that is part grin, part grimace. His social life
revolves around weekly dinners with his parents, both in their 80s. He
can’t keep a job. He can’t find a girlfriend. He paces, obsesses,
repeats himself and sometimes doesn’t realize when he’s saying
something rude. Mitchell blames it all on his autism. “I hate it,” he
says. “It’s a horrible disability. I wish there were a cure."
He has reiterated
those three sentences on the Internet many times, in many ways, and his
unapologetic, blunt stance has made him one of the most controversial
voices in the autism blogosphere—he’s one of the few who have shown
outspoken support for the effort to find a cure. “Hopefully on my
tombstone they will write, ‘We don't need no stinkin’ neurodiversity,’”
Mitchell writes, taking a direct shot at the growing movement for
acceptance and inclusion for people with everything from Asperger’s to
attention deficit disorder, epilepsy and Tourette’s syndrome.
The neurodiversity
movement began in the 1990s, gaining ground through social media,
largely around discussions of autism. Proponents liken their stance to
the struggle for acceptance of ethnic minorities, and for equality in
gender and sexual orientation. There was a time, they point out, when
the medical community considered homosexuality to be a mental disorder.
What if people on the autism spectrum were accepted for their
differences, rather than pathologized? “As an adult with autism, I find
the idea of natural variation to be more appealing than the
alternative—the suggestion that I am innately bad, or broken and in
need of repair,” writes best-selling author John Elder Robison, who has
Asperger’s.
When it comes to the
question of whether and how to “treat” autism, many neurodiversity
advocates try to make a fine distinction: Remedies that aim to relieve
suffering are OK, but the idea of a “cure” is repellent. Many believe,
as autistic educator and author Nick Walker puts it, that the effect of
a cure would be “the reduction of naturally evolved human diversity."
But Walker is a
self-sufficient teacher, husband and parent. What of those severely
autistic children who cannot speak or communicate at all? Shouldn’t
their parents be encouraged to seek treatments that might one day help
them interact more easily with the rest of us? “Parents who whine and
say, ‘I would give anything for my kids to have a normal life,’ these
parents….have been taught this message of tragedy and hopelessness and
have bought into it,” Walker says. “It’s awful. It’s wrong. If a parent
is putting effort into trying to cure autism, that effort is not
helping that child thrive."
+Read more.
• • •
EMPLOYMENT Tearful Dad Does Something
Amazing For His Son With Autism
When John's son
Andrew, who has Autism, was done with school, Andrew felt like he had
no purpose. So his dad started a company to help kids just like him.
+Watch video.
• • •
REFERENCE
The Annual Disability Statistics
Compendium
+Download here.
The Annual
Disability Statistics Compendium is a web-based tool that pools
disability statistics published by various federal agencies together in
one place. When working on legislative and other matters relating to
persons with disabilities, the Compendium will make finding and using
disability statistics easier.
• • •
97
Research Papers Supporting the Vaccine/Autism Link
Published by Ginger Taylor
+Download listing.
Media reports have
claimed that there is no scientific evidence supporting the link
between vaccines and autism. Here we provide for the reader research
that demonstrates the link between vaccines and autism, and the
mechanisms by which vaccines can cause autism.
• • •
What
Financial Plans Required For Special Needs Kids?
New Jersey
By Devin loring
app.com
Photo:
Doug Hood
Allie Burton turned
11 years old last Wednesday.
She enjoys horseback
riding, cheerleading, swimming at the YMCA, doing track and field, and
is the ambassador for the Brick Town Elks.
It's safe to say
that her schedule is packed with activities that might, under some
circumstances, be expensive. But some, like the horseback riding at
Celtic Charms in Howell, are free.
"(People ask) 'How
do I get the state to pay for this?' or 'I've never heard of the
(Division of Developmental Disabilities),' " said Sherry Burton,
Allie's mother, of Brick.
Allie has autism and
Down syndrome, and is in remission from leukemia.
The cost of the
activities she participates in, coupled with the cost of health care
and additional programs can quickly add up to a mountain of expenses
without support.
Burton, who used to
work at New Horizons in Autism, an organization that provides services
for individuals with autism and their families, is familiar with the
realm of special-needs financial planning.
Two major milestones
She said there are
two major financial milestones that a family of a person with
disabilities must prepare for: when that individual turns 21, and when
the caregiver passes away.
Gary Weitzen, of
Freehold, is just starting to face the issue of planning for his son,
Christopher, now.
"My son's 20 with
autism. He's the joy of my life – he's incredible, even with his
challenges. Not a day goes by that I'm not thankful that he's in my
life," he said. "One thing I struggle with every single day is what
happens when I'm dead? How do I take care of him after I pass?"
The key is financial
planning, said Lori Sackler, senior vice president of wealth management
at Morgan Stanely in Paramus.
"Integrating a
financial plan is critical," Sackler said. "It alleviates stress and
anxiety that parents are experiencing, and also makes sure the child
has a sense of security and some dignity and autonomy."
+Read more.
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