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Wednesday, April 30, 2014

Faith Jegede: What I've learned from My Autistic Brothers

From TED@London

April, 2012

Writer Faith Jegede tells the moving and funny story of growing up with her two brothers, both autistic — and both extraordinary. In this talk from the TED Talent Search, she reminds us to pursue a life beyond what is normal.




This talk was originally presented at an official TED conference, and was featured by the editors on the home page.

My Daughter, Profoundly Disabled, Needs a School for Children Like Her

From The New York Times Blog "Motherlode"

By Margaret Storey
April 17, 2014
The author’s daughter at
work on an art project.

A Civil War historian, I never thought I’d use the word “segregationist” to describe myself, but my daughter’s public school has changed all that.

I’m not talking about racial segregation — her school is one of the most economically and ethnically diverse in our town. I’m talking about self-contained education for children with disabilities, which, in the United States, is increasingly rare.

My daughter is 10 years old, but as dependent on others as a 12-month-old. She cannot speak, but communicates volumes with her eyes, vocalizations and gestures. It can take a while to “get” her, but once you do, you’ll never forget how deep she is, nor how much she understands.

My daughter’s school challenges the idea that children with disabilities are best served by being educated alongside non-disabled peers. But the idea that inclusion is best, I would argue, is in danger of hardening into a dogma that risks re-stigmatizing children with severe or profound disabilities.

In our (supposedly) post-racial, post-gender, post-abled moment, my position will certainly be perceived by some as immoral and wrong. Single-sex schools, “sheltered workshops,” and even historically black colleges and universities have all come under criticism for fostering low expectations and consigning people to subpar opportunities.

I understand and agree with many of these concerns. I support the inclusion movement, deeply grateful for the civil rights pioneers who made it possible for my daughter to have a right to public education at all. I recognize that these efforts have been hugely successful for the vast majority of children.

But these practices still leave certain kids out. One mother of a son with severe autism explained that he had done well in a mainstream school while young, but his situation changed as he aged. Things worsened, ending with the child wearing a “helmet with a face guard,” “staff hovering over him every minute” . . . “more or less confined to one room for the whole day.” This was no longer inclusive, but exclusive and stigmatizing.

The alternative of a special school is hard for some parents and educators to embrace. As one mother reflects, “Sending a child to a separate school can feel like a surrender, as if you’re giving up on keeping a child in the community.” I see this stigmatization all around me — most recently, in the mother who had to fight to have her nonverbal, significantly cognitively delayed child placed in a specialized school over the determined resistance of district authorities.

But there is an alternative: destigmatize these children and the special schools they need.

My daughter loves to learn, but to do it, she requires specialists trained to teach a child whose memory and cognition are affected by multiple daily seizures and loads of dulling medications. She needs a setting where the student-to-teacher ratio is low, the expertise of the staff very high, and one that has the resources necessary to pay for that intensive support available. There is no shame in this.

At her school, there are no places she cannot go, no places where she doesn’t belong. She rolls through the front door into classrooms where she is educated, not babysat. She knows older kids with a range of accomplishments and has friends who call out her name when she arrives in the morning. Alongside her peers with disabilities, she’s thriving in a rich, complete school community.

People who advocate inclusion for all might argue that my husband and I suffer from a form of false consciousness; that we don’t see the potential benefits, or “normalization” that could occur in general education. Or they might contend that separate schooling obstructs efforts to foster tolerance of disability in typical children.

Maybe. But if they met our child, I suspect they would retreat pretty quickly. They might begin to appreciate how abstractions about inclusion may fail to comprehend my daughter’s needs. They might see there is a profound, dignified freedom in not being the object lesson for a society that is still, all these years later, teaching kids how to tolerate difference. They might understand that, at a neighborhood school, she would be relegated to a “severe/profound” classroom, terribly isolated by those who claimed to have her best interests at heart.

We still need self-contained special education schools, and we need them to be rigorous and well-funded. Only when we honestly admit that we need these schools can we get down to the hard work of educating kids with disabilities, no matter what the setting. We cannot truly celebrate the diversity of people with disabilities if we fail to acknowledge the diversity among people with disabilities, and rise to meet the varied needs of all.


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Margaret Storey is a Public Voices Fellow with The OpEd Project, Associate Professor of History at DePaul University, and a parent advocate for children with disabilities and medical complexity.

Tuesday, April 29, 2014

What Have We Learned About Special Education in 20 Years?

From Education Development Center, Inc.

April 21, 2014


To mark its 20th anniversary, EDC's Urban Special Education Leadership Collaborative will host a panel discussion focused on two decades of achievement in the field of special education and looks ahead to how the field may evolve.

The discussion will take place during the Collaborative’s spring meeting, April 30 – May 3 in Boston.The meeting’s theme is “Bridges to Learning: Providing High-Quality Social, Emotional, and Behavioral Supports to Students in Urban Schools.”

The Collaborative, a national network of approximately 100 school districts, works to improve educational outcomes and life opportunities for children and youth with disabilities in urban schools. More than 250 special education leaders and school district administrators supporting students with and without disabilities in urban schools are expected to attend.

They will share information and ideas on effective practices and discuss practical, real-world solutions to some of the challenges they face within their own districts.

EDC’s David Riley, the Collaborative’s executive director, will moderate the panel, “Educating Students with Disabilities in Urban Schools, a 20-year Retrospective.”

Participants include the following:
  • Thomas Hehir, professor of Practice in Learning Differences, Graduate School of Education, Harvard University
  • William Henderson, author and retired principal, Dr. William W. Henderson Inclusion School, Boston
  • Cathy Jackson, special education teacher, Brockton Public Schools, Brockton, MA
  • Marcia Mittnacht, state director of special education, Massachusetts Department of Elementary and Secondary Education
  • Ana Morales, senior family support specialist, Seven Hills Family Support Center, Worcester, MA
  • Kay Seale, manager of special education and intervention services, Worcester Public Schools

“We are thrilled to have such well-known voices from the field share their thoughts with us as we mark our two decades of advancing education for students with disabilities,” said Riley.

“We’ve come a long way in terms of what we know about teaching and learning. I look forward to hearing from our panel and meeting participants their predictions of where we are headed.”

The discussion will take place Thursday, May 1, from 11:00am to 12:15pm at Boston’s Park Plaza Hotel. The panel and all of the sessions are designed for both special and general education leaders. To learn more, go to www.urbancollaborative.org.

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Education Development Center, Inc. (EDC) designs, implements, and evaluates programs to improve education, health, and economic opportunity worldwide. EDC manage 250 projects in 30 countries. Visit www.edc.org.

The Urban Special Education Collaborative was founded in 1994 to provide leadership development and networking opportunities uniquely designed to support urban special and general education administrators. Celebrating its 20th year, the Collaborative has grown to include special education leaders in more than 100 urban districts.


Visit www.urbancollaborative.org.

Child’s Autism Risk Accelerates with Mother’s Age Over 30

From Drexel University

April 22, 2014

Older parents are more likely to have a child who develops an autism spectrum disorder (ASD) than are younger parents.

A recent study from researchers from the Drexel University School of Public Health in Philadelphia and Karolinska Institute in Sweden provides more insight into how the risk associated with parental age varies between mothers’ and fathers’ ages, and found that the risk of having a child with both ASD and intellectual disability is larger for older parents.

In the study,
published in the February, 2014 issue of the International Journal of Epidemiology, researchers report that fathers’ and mothers advancing ages have different impacts on their child’s risk. The rise in ASD risk with parental age was greater for older mothers as compared to older fathers.

Autism risk grows steadily with fathers' increasing age, but accelerates
with mothers' age after 30. These charts show generalized additive
model estimates of the probability of ASD in the Stockholm Youth Cohort.
Dashed lines show 95 percent confidence intervals.

“The open question at hand really is, what biological mechanisms underlie these age effects?” said
Brian K. Lee, Ph.D., an assistant professor in the Drexel University School of Public Health and research fellow of the A.J. Drexel Autism Institute, and senior author of the study. The observed differences in risk based on mothers’ and fathers’ ages point to a need to continue investigating underlying mechanisms of ASD that may be influenced by a mother’s age, Lee said, even though much recent discussion has focused on fathers’ and even grandfathers’ ages.

The risk of having a child with ASD had a more complicated relationship to age in women than in men – whose risk of fathering a child with ASD increased linearly with age across their lifespan. Among women giving birth before the age of 30, the risk of ASD in the child showed no association with age -- it was simply very low. But for babies born to mothers aged 30 and older, the chance of developing ASD rose rapidly with the mother's age.

Lee noted that the non-linear maternal age effect that is relatively stronger than the paternal age effect on ASD risk has been observed in previous studies, but has not received much attention.

Multiple mechanisms could be in play to account for the different patterns of risk, including environmental risk factors occurring in women after age 30. Factors such as complications in pregnancy could also underlie the effect of mothers’ ages on a child’s ASD risk but not a paternal age effect.


The linear, steady increase in risk associated with fathers’ ages is consistent with the hypothesis of increased genomic alterations over the father’s lifespan that can increase risk of ASD, Lee said.

In this study, Lee and colleagues analyzed a large population registry sample of 417,303 children born in Sweden between 1984 and 2003, adjusted for numerous possible factors that could vary with parental age and also influence risk, such as family income and each parent’s psychiatric history. The study also used a particularly comprehensive case-finding approach, to identify more ASD cases than other studies might, based on all pathways to care in a socialized health system.

A goal was to study these parental age effects in more detail by looking at possible differing risks of ASD with and without intellectual disability – one of the most serious comorbid diagnoses with ASD, with a significant impact on functional status in life. This was the first population-based study with an ASD sample large enough to study ASD risk in populations of children with and without intellectual disability.

“When considering risk factors, we can’t necessarily lump all ASD cases together, even though they fall under a broad umbrella of autism,” Lee said. “We need to keep an open mind in case intellectual disability might be a marker of a different underlying mechanism.”

The finding that ASD with intellectual disability had a stronger association with older parents, compared to ASD without intellectual disability, supports continued investigation of possible different mechanisms.

Lee noted that, although age effects are important indicators of risk at the population level that could eventually help researchers identify preventable causes of disability, they aren’t very significant for a couple’s family planning because the overall risk remains low. “The absolute risk of having a child with ASD is still approximately 1 in 100 in the overall sample, and less than 2 in 100 even for mothers up to age 45.”

Maybe That BPA In Your Canned Food Isn't So Bad After All

From NPR's Blog "The Salt"
What's on Your Plate

By Jon Hamilton
February 26, 2014

Maybe BPA isn't so bad after all.

The plastic additive has been
vilified by environmental advocacy groups. But the chemical had no effect on rats fed thousands of times the amount a typical person ingests, government scientists are reporting in the journal Toxicological Sciences.

The results "both support and extend the conclusion from the U.S. Food and Drug Administration that BPA is safe as currently used," says
Daniel Doerge, a research chemist with the FDA's National Center for Toxicological Research.

Scientists agree that in large doses, BPA can act a bit like the hormone estrogen. But there's been a lot of debate about whether the tiny amounts found in people have the potential to cause problems.


Should you fear a chemical inside metal food
containers like the ones that hold beans?
Government scientists say no.

BPA has received a lot of attention because the chemical leaches out of many products, including polycarbonate water bottles and the lining of metal food containers. As a result, "Nearly everyone in the U.S. will have traces of BPA in their urine," Doerge says.

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The Salt
Feds Reject Petition To Ban BPA In Food 
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So Doerge and his colleagues have been working with scientists from the
National Toxicology Program at the National Institutes of Health to see if there are any effects from this low-level exposure.

In their most recent study, the researchers exposed rats to BPA starting a few days after conception and continuing through sexual maturity. Doses ranged from about 70 times the amount that Americans typically get through their diet to millions of times that amount.

And even when rats got more than 70,000 times what a typical American ingests, there was no change in body weight, reproductive organs or hormone levels, the scientists reported. "In the low-dose range, there really were no biologically significant changes observed at all," Doerge says.


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Shots - Health News
Link Between BPA And Childhood Obesity Is Unclear
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It was only when exposures were millions of times higher than what people typically get that the scientists saw changes like those caused by the body's own sex hormones.

To double-check the results, the scientists also looked at how BPA was interacting with estrogen receptors — the part of a cell that usually responds to estrogen. And once again it was only the highest doses that produced interactions.

The results bolster previous
studies by government researchers showing that people's exposure to BPA is lower than previously estimated and that the human body is really good at inactivating and eliminating BPA. But they are at odds with some smaller and less rigorous academic studies.

Some of the academic scientists who did those studies have already
called the new government study flawed. They say it failed to look at things like brain development. They also say the results were compromised because even the "control" animals in the study had trace amounts of BPA in their bodies.

That sort of response is pretty typical in the debate over BPA and other hormonelike chemicals known as endocrine disruptors, says
David Ropeik, a Harvard instructor and author of the book How Risky Is It, Really?

"The endocrine disruption issue has evoked some of the most visceral and ugly attacks among scientists of any scientific issue recently," he says.

For example, when the
European Food Safety Authority concluded a few weeks ago that BPA is far less risky than some advocacy groups had suggested, "the endocrine disruption movement said, 'Oh my God, they're all corrupt. They're all taking corporate money,' " Ropeik says.

Lively debate is a natural part of science playing out in the public realm. But this sort of allegation may help undermine trust in regulatory agencies and their scientists, Ropeik says.

And it may leave consumers perplexed about what chemicals like BPA are actually doing in the body. In that case, Ropeik recommends referring back to the best science available.

Monday, April 28, 2014

Guest Blog: A Cautionary Tale for Autism Drug Development

From SFARI
The Simons Foundation Autism Research Foundation

By Michael Ehlers
April 14, 2014

Steve Perrin provides a thoughtful critique of preclinical models for testing drug effects in human disease models and a powerful proposal for how to improve them in his 27 March comment in the journal Nature. Perrin argues that poorly designed animal drug studies lead to spurious conclusions that form the basis for costly, and ultimately negative, clinical trials. This may be even more true for autism research.

Perrin is the chief scientific officer at the
ALS Therapy Development Institute (ALSTDI) in Cambridge, Massachusetts, a scientific organization dedicated to identifying and advancing therapeutic development for amyotrophic lateral sclerosis (ALS).

That context is important, as the broader biomedical research community struggles with the swirling incentives of publication, funding, the maximization of shareholder value and bias toward positive results that collectively drive academic research, disease-oriented foundations and biopharmaceutical companies.

Experimental Noise

As Perrin documents, his institute could not reproduce study after study using specific ALS mouse models with a variety of drugs, all reporting impressive improvements.


The drugs all notably failed to demonstrate benefit in clinical trials. A skeptic might wonder — well, are those scientists at the institute missing key procedural details? Are they doing the studies correctly?

Perrin attributes the discrepancy, in general terms, to experimental ‘noise’ and lays out a set of recommendations on the design of animal studies to avoid spurious conclusions...


Read the rest of this article HERE.

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Michael Ehlers is senior vice president and chief scientific officer for neuroscience at Pfizer in Cambridge, Massachusetts.

Are The Mentally Ill Treated As Criminals In Massachusetts?

From Radio Boston

April 23, 2014

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Listen to this story (17:59) HERE.
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Despite lawsuits, years of complaints and a recent patient death that was ruled a homicide, advocates for the mentally ill say that, too often, Massachusetts treats those suffering from mental illness as criminals.

At issue is Bridgewater State Hospital, which is actually a medium security prison that provides mental health care for prison inmates, including mental health patients who’ve never been convicted of crimes.

A look inside Bridgewater State Hospital. (J. Baker/Flickr)

The Boston Globe has reported on the use of restraints and isolation at Bridgewater — including the case of Joshua Messier. He died in 2009 as six guards — with no mental health training — struggled violently to strap his wrists and ankles to a bed. Authorities ruled his death was a homicide.

Then there’s the case of Peter Minich, who suffers from schizophrenia. He was admitted to Bridgewater last year after he assaulted two workers in a psychiatric hospital. He’s never been convicted of a crime, but at Bridgewater, guards held him in seclusion and restraints for the better part of 14 months — until his mother filed suit.

Guests

Eric MacLeish, attorney with the firm Clark, Hunt, Ahern and Embry. He represents Peter Minich, and wrote an opinion piece in today’s Boston Globe about treating the mentally ill as criminals in Massachusetts.

Joanne Minich, mother of Peter Minich, who has schizophrenia and is at Bridgewater State Hospital.

Highlights

On Peter Minich’s treatment at Bridgewater:
Eric MacLeish: “Peter spent the better part of 14 months in isolation and when he was not in isolation, going outside the facility for electric shock treatments — and then also a mechanical restraint which means he’s being tied down with straps on a bed for periods as long as 50 hours. He’s not released from those restraints. He has to defecate into a bed pan. Occasionally an arm will be released for him to urinate. But this is absolutely barbaric. These are medieval conditions involving a man who has a biologically based illness.”

On what the family wants for Peter:
EM: “This is not a lawsuit, at this point, for money damages. This is a pro bono lawsuit. I was contacted by Mrs. Minich and asked to help for her son. I’d been involved with Bridgewater back in the 1980s, and there was consent to prohibit this kind of practice from occurring. And there was the creation of a medium security inmate facility where individuals who had mental illness and who had challenging behavior could be sent.

So, the aim of the lawsuit, this is not a class action, although it could be expanded into one, the aim of the lawsuit, principally, is to get people like Peter out of this isolation where their psychosis and their mental illness will become more severe. Secondarily, the aim of the lawsuit — I mean, we are really unlike any other state from what I can see in the country, in that we take people who have not been convicted, and Peter’s ‘alleged crimes,’ they were pushing, striking out while under heavy doses of medication. He’s not a violent person, he could never hurt anybody.

But they were crimes that he was sent to Bridgewater for a competency evaluation but even if convicted he has no criminal record, these were misdemeanors. He could never, ever have served time in a prison. So, the backdoor way the Department of Mental Health gets these profoundly ill people into Bridgewater is by charging them with petty criminal offenses that are in large part a manifestation of their illness, they’re sent to Bridgewater for evaluation on criminal charges and then they can be committed there indefinitely. That’s what’s happened to Peter, and many other people, too.”

On Joanne’s hopes for her son:
Joanne Minich: “I just want him to have humane treatment and I want him out of Bridgewater, I don’t want him in that society. His confinement there has been frightening and inhuman and it’s not right what’s going on. I could not stand by any longer and do nothing about it. He has an organic brain disease and when not hearing voices he’s a kind, sincere and caring young man. He’s a great artist and a fierce scrabble player.

And we’ve struggled for many years to make sure he has the best care possible but his downward and aggressive spiral started at the Department of Mental Health in Bridgewater after our private insurance ran out at McLean. He has no criminal record, he hasn’t been convicted of any crime and his only crime is his illness and that is enough of a life sentence.”

More

Radio Boston: Death At Bridgewater
“Joshua Messier died in a medium security prison, even though he had not been convicted of a crime. The 23-year-old had schizophrenia, and was prone to violence, so authorities sent him for psychiatric evaluation to Bridgewater State Hospital, which is more prison than medical facility.”

WBUR: Report: Mass. Mental Health Services ‘Way Behind’
“Massachusetts is “way behind” in its delivery of mental health services with treatment options hampered by budget cuts since 2009, inadequate funding for police training and a shortage of inpatient psychiatric beds that is putting stress on hospital emergency rooms, according to a new report.”

The Boston Globe: Mental Illness Not A Crime; Why Treat It That Way?
“Think for a moment about the unconditional love we have for our children. Nothing prepares us for it. The bond continues unbroken as our son or daughter goes through the various phases of life. We try to be the best possible parents, sometimes under challenging circumstances.”

Sunday, April 27, 2014

ADHD: Scientists Discover Brain's Anti-Distraction System

From ScienceDaily


April 18, 2014

Summary: Psychologists have made a brain-related discovery that could revolutionize doctors' perception and treatment of attention-deficit disorders. This discovery opens up the possibility that environmental and/or genetic factors may hinder or suppress a specific brain activity that the researchers have identified as helping us prevent distraction.

Two Simon Fraser University psychologists have made a
brain-related discovery that could revolutionize doctors'
perception and treatment of attention-deficit disorders.

This discovery opens up the possibility that environmental and/or genetic factors may hinder or suppress a specific brain activity that the researchers have identified as helping us prevent distraction.

The Journal of Neuroscience has just published a paper about the discovery by John McDonald, an associate professor of psychology and his doctoral student John Gaspar, who made the discovery during his master's thesis research.

This is the first study to reveal our brains rely on an active suppression mechanism to avoid being distracted by salient irrelevant information when we want to focus on a particular item or task.

McDonald, a Canada Research Chair in Cognitive Neuroscience, and other scientists first discovered the existence of the specific neural index of suppression in his lab in 2009. But, until now, little was known about how it helps us ignore visual distractions.

"This is an important discovery for neuroscientists and psychologists because most contemporary ideas of attention highlight brain processes that are involved in picking out relevant objects from the visual field. It's like finding Waldo in a Where's Waldo illustration," says Gaspar, the study's lead author.

"Our results show clearly that this is only one part of the equation and that active suppression of the irrelevant objects is another important part."

Given the proliferation of distracting consumer devices in our technology-driven, fast-paced society, the psychologists say their discovery could help scientists and health care professionals better treat individuals with distraction-related attentional deficits.

"Distraction is a leading cause of injury and death in driving and other high-stakes environments," notes McDonald, the study's senior author. "There are individual differences in the ability to deal with distraction. New electronic products are designed to grab attention. Suppressing such signals takes effort, and sometimes people can't seem to do it.

"Moreover, disorders associated with attention deficits, such as ADHD and schizophrenia, may turn out to be due to difficulties in suppressing irrelevant objects rather than difficulty selecting relevant ones."

The researchers are now turning their attention to understanding how we deal with distraction. They're looking at when and why we can't suppress potentially distracting objects, whether some of us are better at doing so and why that is the case.

"There's evidence that attentional abilities decline with age and that women are better than men at certain visual attentional tasks," says Gaspar, the study's first author.

The study was based on three experiments in which 47 students performed an attention-demanding visual search task. Their mean age was 21. The researchers studied their neural processes related to attention, distraction and suppression by recording electrical brain signals from sensors embedded in a cap they wore.


Journal Reference

J. M. Gaspar, J. J. McDonald. Suppression of Salient Objects Prevents Distraction in Visual Search. Journal of Neuroscience, 2014; 34 (16): 5658 DOI: 10.1523/JNEUROSCI.4161-13.2014

Vaccines Work. These 8 Charts Prove It.

From Mother Jones

April 21, 2014
More kids die of vaccine-preventable diseases every year than the entire population of Philadelphia—but that's a lot less than just 30 years ago.

In honor of World Immunization Week, which begins this Thursday (April 24), UNICEF crunched the numbers on vaccines around the globe:



To me, that last graph is the most remarkable: We've more than quadrupled the global average routine immunization rate since 1980. But the hard work isn't over. By 2020, UNICEF and the World Health Organization hope to increase that rate to 90 percent in every country in the world. In some places, that will be a heavy lift.

In 2012, the last year for which UNICEF has data, the nations with the lowest rates of routine immunization in the world were Equatorial Guinea (33 percent), Nigeria (41 percent), and Chad (45 percent). By comparison, many countries in the European Union have rates of 99 percent, and the United States' is 95 percent.

Jos Vandelaer, UNICEF's chief of immunizations, notes that even when a country has eradicated a disease, it's important to keep vaccinating children against it. Polio has been eradicated in every nation except
Afghanistan, Pakistan, and Nigeria—and yet, in the past year, there have been cases of the disease in the Horn of Africa, Syria, and Iraq.

By analyzing those recent cases, scientists determined that they were caused by the same strain of virus present in the three countries where the disease is still endemic. That means that the recent cases were imported—and that herd immunity is not yet strong enough in the Horn of Africa, Syria, or Iraq to prevent outbreaks.

That problem isn't limited to the developing world; we're seeing the same phenomenon with
measles right here in the United States. "The virus finds the children who are not immune," says Vandelaer. "And then you see outbreaks."

Saturday, April 26, 2014

Upcoming Trainings: Complex Childhood Trauma and Education

From FCSN.org
The Federation for Children with Special Needs

April 24, 2014

More Evidence of Impaired Immune Response in Some Children with Autism

From Autism Speaks Science

April 21, 2014

Study follows up on earlier research showing higher incidence of problems with cell-powerhouses known as mitochondria.

Our cells are powered by biochemical
generators called mitochondria.
Some research implicates their
dysfunction as contributing to
autism in some individuals.
Researchers studying immune cells called granulocytes found evidence of weakened cell function in a small study of ten children with autism. In these children, the immune cells were less able to deliver the normal “oxidative burst” of chemicals designed to destroy invading germs. The cells also had signs of stress and dysfunction in the tiny cell powerhouses known as mitochondria.

Drawing a link between autism, mitochondria and immune function, the researchers say their findings suggest a new direction for developing treatments.

The study, from the University of California-Davis, appears today in the journal Pediatrics. It follows up on the team’s earlier research on autism and mitochondrial dysfunction.

Both reports involved participants enrolled in the Childhood Autism Risks from Genetics and the Environment (CHARGE) study. The researchers also draw a connection between their new findings and earlier CHARGE studies linking inflammation during pregnancy with increased risk of autism and immune problems in offspring.

Mitochondria and Autism

 All human cells depend on small but complex structures called mitochondria for the majority of their energy. Mitochondria are especially important for powering energy-demanding cells such as neurons (brain nerve cells).

Certain rare mitochondrial disorders are known to produce behavioral issues and symptoms of autism in some but not all of those affected. Some studies have suggested that milder mitochondrial dysfunction can likewise contribute to the development of autism spectrum disorder (ASD). Still other research indicates that infection and inflammation can worsen mitochondrial disorders.

New Biochemical Evidence

In their new study, the UC-Davis investigators measured the infection-fighting “oxidative bursts” produced by granulocyte cells. On average, the bursts were three-times lower in the granulocytes of the ten children with autism than in typically developing children.

They also measured free radicals – a sign of stress and dysfunction – inside the mitochondria of these immune cells. On average, the reactive oxygen levels were 1.6 times higher in the mitochondria of the children who had autism than in typical children.

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In related news, a new study in JAMA Pediatrics tracked another sign of mitochondrial stress and dysfunction – elevated lactate levels – in the brains of individuals with autism. Noninvasive brain imaging showed elevated brain-lactate levels in 13 percent of 75 children and adults with autism compared to just 1 percent of 96 individuals without ASD. The researchers conclude that mitochondrial dysfunction may play a role in producing autism in a subset of individuals with the disorder.

Friday, April 25, 2014

From Autism Speaks Science

April 18, 2014

U.S. Interagency Autism Coordinating Committee publishes its selection of the 20 most-significant research studies of last year.


The Interagency Autism Coordinating Committee (IACC) has published its selections of the twenty most-significant autism research studies of 2013. The 2013 IACC Summary of Advances highlights these studies and lists all of the 94 research papers that were nominated by its committee members.

"The IACC selected these twenty studies as the most informative and transformative advances of the last year,” said committee chair Tom Insel. Dr. Insel also directs the National Institute of Mental Health. “[These studies] offer the possibility of directly improving the lives of those with ASD and significantly furthering our understanding of autism," he said.

In all, more than 2,000 research papers on autism were published by peer-reviewed scientific journals last year.


Last December, Autism Speaks published its Top Ten Advances in Autism Research 2013.”

This annual “Top Ten” includes lay-friendly summaries of how each study advanced understanding of autism and the development of effective treatments and supports.

Map Of The Developing Human Brain Shows Where Problems Begin

From NPR's Health Blog "Shots"

By Jon Hamilton
April 02, 2014

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Listen to the Story (4:00) on All Things Considered
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A high-resolution map of the human brain in utero is providing hints about the origins of disorders including schizophrenia and autism.

The map shows where genes are turned on and off throughout the entire brain at about the midpoint of pregnancy, a time when critical structures are taking shape, researchers reported Wednesday in the journal Nature.

"It's a pretty big leap," says
Ed Lein, an investigator at the Allen Institute for Brain Science in Seattle who played a central role in creating the map. "Basically, there was no information of this sort prior to this project."

Having a map like this is important because many psychiatric and behavioral problems appear to begin before birth, "even though they may not manifest until teenage years or even the early 20s," says
Dr. Thomas Insel, of the National Institute of Mental Health.

Images of the developing fetal brain show connections among brain regions.
Allen Institute for Brain Science; Bruce Fischl, Martinos Center for
Biomedial Imaging, Massachusetts General Hospital

The human brain is often called the most complex object in the universe. Yet its basic architecture is created in just nine months, when it grows from a single cell to more than 80 billion cells organized in a way that will eventually let us think and feel and remember.

"We're talking about a remarkable process," a process controlled by our genes, Lein says. So he and a large team of researchers decided to use genetic techniques to create a map that would help reveal this process. Funding came from the 2009 federal stimulus package. The project is part of the
BrainSpan Atlas of the Developing Human Brain.

The massive effort required tens of thousands of brain tissue samples so small that they had to be cut out with a laser. Researchers used brain tissue from four aborted fetuses, a practice that the Obama administration has authorized over the objections of abortion opponents.

Researchers tested each sample to see which genes were turned on and off in each tiny bit of brain. This helped the team figure out which types cells were present at specific points in the brain and what those cells were doing, Lein says.

The resulting map, which is available to anyone who wants to use it, has already led to at least two important findings, Lein says. "The first is that many genes that are associated with brain disorders are turned on early in development, which suggests that these disorders may have their origin from these very early time points."

And the map tells researchers who study these disorders where in the brain they should be looking for signs of trouble, Lein says.

For example, the map shows that genes associated with autism appear to be acting on a specific type of brain cell in a part of the brain called the neocortex. That suggests "we should be looking at this particular type of cell in the neocortex, and furthermore that we should probably be looking very early in the prenatal stages for the origin of autism," Lein says.

The second important finding from the mapping project, Lein says, is that the human brain is different from a mouse brain in ways researchers didn't know before. These differences could explain why a number of brain drugs that work well in mice have failed badly in people.

The map also reveals just how little scientists had known about the brain of a fetus.

"It's an enormous surprise to us that the genes that get expressed in the fetal brain don't look anything like what we would have expected from the adult brain," Insel says. "It's almost as if the fetal brain is a different organ altogether."

That realization is already helping to explain the complex role that genes often play in brain disorders, Insel says.

For example, researchers have been puzzled by some of the genes that appear to be involved in autism and schizophrenia because their function in the adult brain didn't seem to have anything to do with the disorders.

"But when you look at these new maps we have of what's happening in the fetal brain," Insel says, suddenly much of this begins to make sense."

Thursday, April 24, 2014

From FCSN.org
The Federation for Children with Special Needs

April 24, 2014

The Next Juvenile Justice Reform

From The New York Times

By The Editorial Board
April 20, 2014

Research has long shown that locking up young people puts them at greater risk of dropping out of school, joining the unemployment line and becoming permanently entangled in the criminal justice system. States and municipalities have thus been sending fewer young offenders to juvenile institutions and more of them to community-based programs that keep them connected to their families and reduce the risk that they will engage in further crime. The number of children held in custody plummeted from about 107,000 in 1995 to less than 71,000 in 2010 and is still falling.

This is all to the good. But the authorities could bring even more juveniles into the mainstream if they did a significantly better job of educating them. That means paying more attention to the learning disabilities, emotional problems and substance abuse issues with which these youngsters are disproportionately afflicted and which often helped land them in trouble in the first place.

It is a mistake to assume that all children held in juvenile facilities represent “hard cases” beyond redemption. Indeed, a new study, by the Southern Education Foundation, a nonprofit group based in Atlanta, shows that nearly two-thirds of the young people who were confined in 2010 were confined for nonviolent offenses.

Moreover, disproportionate numbers of these young people have special needs. Federal data from 2010 show that 30 percent had learning disabilities, 45 percent had problems paying attention and 30 percent had experienced physical or sexual abuse.


It should come as no surprise that most of the young people entering juvenile residential institutions are behind in reading and math.

These children do not get the attention in school that they need to succeed and get even less of it in juvenile justice facilities. A federal study showed that in 2009, fewer than half of students in state juvenile justice programs earned even one course credit and that fewer than one in 10 earned a high school diploma or a G.E.D. This makes it unlikely that most of them will succeed at school once they are released and more likely that they will get in trouble again.

The good news is that it is possible to create strong schools inside juvenile facilities that actually help the most troubled children. This can be done by improving coordination between the public schools and the juvenile justice system. States can also seek to emulate models like the one used at the Maya Angelou Academy in a juvenile facility in the District of Columbia, which hires talented teachers with high expectations, uses individualized instruction to meet particular student needs and weaves special education services throughout its lessons.

Most important, however, the states need to redefine the mission of their juvenile justice systems. That means refocusing from warehousing and punishing juveniles to a much more positive mission: educating troubled youths who typically suffer from an array of psychological and educational challenges.

Wednesday, April 23, 2014

Just In: Autism Twitter Chat Thursday, April 24th


April 23, 2014

Please join us for a Twitter Chat on Thursday, April 24th!

Thanks to everyone who attended CDC’s first ever Public Health Grand Rounds on autism spectrum disorder this past Tuesday. To keep this important conversation going, please join us for a Twitter Chat on the public health approach to autism, hosted by NCBDDD Director, Dr. Coleen Boyle (@DrBoyleCDC), and the American Academy of Pediatrics (@AmerAcadPeds).

Join these leaders and other partners in a follow-up discussion on the important topics covered through Grand Rounds: autism research, surveillance, and early identification and screening.

The chat will take place on Thursday, April 24, from 1:00-2:00pm EST. Participate using hashtag #AutismPHGR. Please join us!

When Parents Aren't Enough: External Advocacy in Special Education

From The Yale Law Journal

By Erin Phillips
Volume 117, No. 8 (June, 2008)

"Parents often lack the necessary knowledge about disability and educational options, and often have difficulty interfacing with school officials in special education proceedings. These gaps in knowledge and ability make it difficult for parents to advocate effectively for their children without any external help..."

ABSTRACT: The Individuals with Disabilities Education Act (IDEA) has been widely celebrated for providing millions of disabled children with broader educational and life opportunities. This Note seeks to improve the implementation of the IDEA by questioning one of its key assumptions: that parents possess the tools to advocate for their children in special education matters.

This Note argues that many parents need assistance to achieve optimal outcomes for their children because of the complexity of both the disabilities involved and the formal rules of the system itself. Several policy options are considered in the hope that local educational agencies will implement pilot programs to further explore the issue of external advocacy in special education
.

Read the entire article (52-Page PDF) HERE.

Upcoming Presentations by NESCA Director of Behavioral Services Jessica Minahan, M.Ed., BCBA

From NESCA

April 23, 2014

If you've never attended one of Jessica Minahan's workshops, you are seriously missing out! In plain English, she teaches strategies and techniques of proven effectiveness and practical value.  Here are two that you might want to attend:

April 30, 2014: Marshfield SEPAC, Marshfield, MA. Please click on the link below for complete details.
The Behavior Code: Effective Strategies for Students with Anxiety


May 1, 2014: Full-Day Training - Massachusetts Elementary School Principals’ Association (MESPA). Please click on the link below for complete details.
Rethinking Behavior Support: Effective Interventions for Students with Anxiety-Related and Oppositional Behavior

These talks are free and open to the public. Advance registration may be required.

About Jessica Minahan, M.Ed., BCBA

Jessica Minahan is co-author, with Psychiatrist Nancy Rappaport, of The Behavior Code: A Practical Guide to Understanding and Teaching the Most Challenging Students, published by Harvard Education Press.

She holds a B.S. in Intensive Special Education from Boston University, and a dual master’s degree in Special Education and Elementary Education from Wheelock College. She has a certificate of graduate study (CGS) in teaching children with Autism from University of Albany, and received her BCBA training from Northeastern.

Her additional Massachusetts and other professional certifications include Teacher of Students with Special Needs (Pre-K through 9), Intensive Special Needs (All Levels), Professional Early Childhood (Pre-K through 3), Special Education Administration (All Levels, Initial), Crisis Prevention Intervention Trainer and Wilson Reading Level 1.

Since 2000, she has worked with students who exhibit highly challenging behavior in both their homes and schools. She specializes in creating behavioral intervention plans for students who demonstrate explosive and unsafe behavior. She also works with students with emotional and behavioral disturbances, anxiety disorders, high-functioning autism and Asperger’s Syndrome.

April 29: NIMH Twitter Chat on Autism Spectrum Disorder Diagnosis

From NIMH
The National Institute of Mental Health

April 22, 2014

In recognition of Autism Awareness Month, the National Institute of Mental Health (NIMH) will be hosting a Twitter chat on autism spectrum disorder (ASD) screening and diagnosis.

ASD is a developmental disorder characterized by social impairment, communication difficulties, and repetitive and restrictive behaviors. Early detection and intervention is the key to successful outcomes in children with ASD. However, diagnosing ASD can be difficult since it is based entirely on behavior—there are no established biomarkers for the disorder.

During the Twitter chat, NIMH experts
Susan Swedo, M.D., chief of the Pediatrics and Developmental Neuroscience Branch and Audrey Thurm , Ph.D., clinical child psychologist in the Pediatrics and Developmental Neuroscience Branch, will be on hand to discuss how parents and health care providers can work together to accurately diagnose ASD and other developmental disorders in children.

If you think your child may have ASD or you are concerned there could be a problem with your child’s development, please join us on Tuesday, April 29, 2014, from 2 to 3 p.m. EST.

Please use the hashtag
#NIMHchats to follow and participate in the Twitter chat. To ask questions, you must have a Twitter account. If you prefer to simply observe the chat taking place, you may enter #NIMHchats at twubs.com to view the conversation in real-time. An archive of the chat will be posted on NIMH’s website following the event.

If you have any questions, please email
NIMHpress@nih.gov. See you on Twitter!