Tag: Science

Sweating People

Photo by Food Photographer | Jennifer Pallian

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When people become stressed, their bodies can respond by sweating. Now, researchers at the University of Missouri are monitoring how much adolescents severely affected by autism sweat in order to better understand when behavioral issues, such as aggression, are likely to occur.

Bradley Ferguson analyzed the stress levels of eight adolescents who are severely affected by autism spectrum disorder at The Center for Discovery, a residential facility in New York that provides advanced care and research for individuals with complex conditions. Using wrist and ankle monitors, Ferguson found that there was a rise in the body’s electrodermal activity – which results from increased levels of sweat – 60% of the time before an individual showed behavioral issues.

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“A spike in electrodermal activity is telling us that the individual’s body is reacting physiologically to something that is stressful, which could be their internal state, something in the environment, or a combination of the two,” said Ferguson, assistant research professor in the departments of health psychology, radiology and the Thompson Center for Autism and Neurodevelopmental Disorders. “If parents or caregivers are notified ahead of time that their child’s stress levels are rising, they might have a chance to intervene and de-escalate the situation before problem behaviors occur.”

Ferguson explained that possible intervention methods could include removing the child from the environment or activity that is causing the stress, as well as providing access to an item that the child enjoys interacting with in an effort to calm them.

“Individuals who are severely affected by autism spectrum disorder are often unable to verbally communicate their discomfort when they become stressed,” Ferguson said. “However, their body still responds to stressors just like anyone else. Therefore, being alerted of increases in electrodermal activity can allow parents and caregivers to intervene prior to engagement in problem behavior with the goal of ensuring the health and safety of those involved.”

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Ferguson collaborated on the study with David Beversdorf, a professor of radiology, neurology and psychology in the MU College of Arts and Science as well as principal investigator of the Cognitive Neuroscience Laboratory in the MU School of Medicine. Ferguson also collaborated with Theresa Hamlin, Johanna Lantz, and Tania Villavicencio at The Center for Discovery, and John Coles at Calspan-University of Buffalo Research Center and The State University of New York at Buffalo.

“Important work is being done to try to identify predictors for when a person with autism is at greatest risk of having a behavioral episode,” Beversdorf said. “This research highlights the individual variability in this response that must be considered, and may also have implications for individualized treatment approaches moving forward.”

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“Examining the association between electrodermal activity and problem behavior in severe autism spectrum disorder: A feasibility study,” was published in Frontiers in Psychiatry.

The study was funded by the New York State Center of Excellence, New York State Department of Health and Office for People with Developmental Disabilities, as well as private monies donated to The Center for Discovery. The content is solely the responsibilities of the authors and does not necessarily represent the official views of the funding agencies.

The Department of Health Psychology is in the MU School of Health Professions, and the Department of Radiology is in the MU School of Medicine.

Earliest Signs of Life

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Scientists Find Microbial Remains in Ancient Rocks

Scientists have found exceptionally preserved microbial remains in some of Earth’s oldest rocks in Western Australia – a major advance in the field, offering clues for how life on Earth originated.

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The UNSW researchers found the organic matter in stromatolites – fossilised microbial structures – from the ancient Dresser Formation in the Pilbara region of Western Australia.

The stromatolites have been thought to be of biogenic origin ever since they were discovered in the 1980s. However, despite strong textural evidence, that theory was unproven for nearly four decades, because scientists hadn’t been able to show the definitive presence of preserved organic matter remains – until today’s publication in prestigious journal Geology.

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“This is an exciting discovery – for the first time, we’re able to show the world that these stromatolites are definitive evidence for the earliest life on Earth,” says lead researcher Dr Raphael Baumgartner, a research associate of the Australian Centre for Astrobiology in Professor Martin Van Kranendonk’s team at UNSW.

Professor Van Kranendonk says the discovery is the closest the team have come to a “smoking gun” to prove the existence of such ancient life.

“This represents a major advance in our knowledge of these rocks, in the science of early life investigations generally, and – more specifically – in the search for life on Mars. We now have a new target and new methodology to search for ancient life traces,” Professor Van Kranendonk says.

Drilling deep, looking closely

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Ever since the Dresser Formation was discovered in the 1980, scientists have wondered whether the structures were truly microbial and therefore the earliest signs of life.

“Unfortunately, there is a climate of mistrust of textural biosignatures in the research community. Hence, the origin of the stromatolites in the Dresser Formation has been a hotly debated topic,” Dr Baumgartner says.

“In this study, I spent a lot of time in the lab, using micro-analytical techniques to look very closely at the rock samples, to prove our theory once and for all.”

Stromatolites in the Dresser Formation are usually sourced from the rock surface, and are therefore highly weathered. For this study, the scientists worked with samples that were taken from further down into the rock, below the weathering profile, where the stromatolites are exceptionally well preserved.

“Looking at drill core samples allowed us to look at a perfect snapshot of ancient microbial life,” Dr Baumgartner says.

Using a variety of cutting-edge micro-analytical tools and techniques – including high-powered electron microscopy, spectroscopy and isotope analysis – Dr Baumgartner analysed the rocks.

He found that the stromatolites are essentially composed of pyrite – a mineral also known as ‘fool’s gold’ – that contains organic matter.

“The organic matter that we found preserved within pyrite of the stromatolites is exciting – we’re looking at exceptionally preserved coherent filaments and strands that are typically remains of microbial biofilms,” Dr Baumgartner says.

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The researchers say that such remains have never been observed before in the Dresser Formation, and that actually seeing the evidence down the microscope was incredibly exciting.

“I was pretty surprised – we never expected to find this level of evidence before I started this project. I remember the night at the electron microscope where I finally figured out that I was looking at biofilm remains. I think it was around 11pm when I had this ‘eureka’ moment, and I stayed until three or four o’clock in the morning, just imaging and imaging because I was so excited. I totally lost track of time,” Dr Baumgartner says.

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Clues for search for life on Mars

Just over two years ago, Dr Baumgartner’s colleague Tara Djokic, a UNSW PhD candidate, found stromatolites in hot spring deposits in the same region in WA, pushing back the earliest known existence of microbial life on land by 580 million years.

“Tara’s main findings were these exceptional geyserite deposits that indicate that there have been geysers in this area, and therefore fluid expulsions on exposed land surface,” Dr Baumgartner says.

“Her study was focused on the broader geological setting of the paleo-environment – lending support to the theory that life originated on land, rather than in the ocean – whereas my study really went deeper on the finer details of the stromatolite structures from the area.”

The scientists say that both studies are helping us answer a central question: where did humanity come from?

“Understanding where life could have emerged is really important in order to understand our ancestry. And from there, it could help us understand where else life could have occurred – for example, where it was kick-started on other planets,” Dr Baumgartner says.

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Just last month, NASA and European Space Agency (ESA) scientists spent as week in the Pilbara with Martin Van Kranendonk for specialist training in identifying signs of life in these same ancient rocks. It was the first time that Van Kranendonk shared the region’s insights with a dedicated team of Mars specialists – a group including the Heads of NASA and ESA Mars 2020 missions.

“It is deeply satisfying that Australia’s ancient rocks and our scientific know-how is making such a significant contribution to our search for extra-terrestrial life and unlocking the secrets of Mars,” says Professor Van Kranendonk.

Harvard University to Launch Center for Autism Research

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Autism and related disorders—a constellation of neurodevelopmental conditions affecting one in 59 children in the United States alone—have become one of modern medicine’s most confounding mysteries. The condition is believed to arise from the complex interplay between genes and environment, yet its basic biology remains largely a black box.

Now, a new research effort at Harvard University led by Harvard Medical School is poised to identify the biologic roots and molecular changes that give rise to autism and related disorders with the goal of informing the development of better diagnostic tools and new therapies. Harvard University has received a $20 million gift from philanthropists Lisa Yang and Hock Tan, an alumnus of Harvard Business School, to establish The Hock E. Tan and K. Lisa Yang Center for Autism Research at Harvard Medical School. The latest gift brings the total autism-related research funding provided by Yang and Tan to nearly $70 million.

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The center will serve as a hub that brings together the diverse expertise of scientists and clinicians working throughout Harvard University, Harvard Medical School and its affiliated hospitals.

“There is an urgent need to understand the fundamental biology of autism,” said Michael Greenberg, chair of the Department of Neurobiology at Harvard Medical School and the center’s inaugural faculty leader. “I strongly believe that the multidisciplinary expertise convened by this center will propel us into a new era of autism research, enhancing our understanding of the condition and yielding critical new insights into its causes. This generous gift will be transformative for the field.”

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Working under the premise that autism’s complexity demands the cross-pollination of diverse expertise across different modes of scientific inquiry, the center will encompass the efforts of basic, translational and clinical scientists from the entire Harvard ecosystem. The center will have its administrative home within the Harvard Brain Science Initiative, which brings together researchers from Harvard Medical School and its affiliated hospitals as well as from the Harvard Faculty of Arts and Sciences, the Harvard T.H. Chan School of Public Health and the Harvard John A. Paulson School of Engineering and Applied Sciences. “Neuroscience has reached a unique inflection point. Advances such as single-cell analysis and optogenetics, coupled with an unprecedented ability to visualize molecular shifts down to the minutest level, will enable today’s researchers to tackle a disorder as dauntingly complex as autism,” said Harvard Medical School Dean George Q. Daley.

“Medical history has taught us that truly transformative therapies flow only from a clear understanding of the fundamental biology that underlies a condition,” Daley added. “This gift will allow our researchers to generate critical insights about autism and related disorders.”

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Investigators at the new Harvard University center will collaborate with peer researchers at MIT and complement efforts already underway at The Hock E. Tan and K. Lisa Yang Center for Autism Research at the McGovern Institute for Brain Research at MIT, with the unique strengths of each institution converging toward a shared goal: understanding the roots of autism, explaining the condition’s behavior and evolution and translating those insights into novel approaches to treat its symptoms.

“In a short time, the Tan-Yang Center at the McGovern Institute has supported groundbreaking research we believe will change our understanding of autism,” said Robert Desimone, the director of the sibling center at MIT. “We look forward to joining forces with the new center at Harvard, to greatly accelerate the pace of autism-related research.”

“We are excited and hopeful that these sibling centers at Harvard and MIT—two powerhouses of biomedical research—will continue to collaborate in a synergistic way and bring about critical new insights to our understanding of autism,” Yang said. Yang is a former investment banker who has devoted much of her time to mental health advocacy. Tan is president and CEO of Broadcom, a global infrastructure technology company. 

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Autism-spectrum disorders—neurodevelopmental conditions that typically emerge in the first few years of life—are marked by a cluster of symptoms, impaired social interactions and compromised communication skills. Yet exactly what portion of these cases is rooted in genetic mutations and how they are influenced by environmental factors is an area of lingering uncertainty. Another key area of uncertainty is how much of autism’s fundamental features arise in the brain and what influence organs and systems outside of the brain might have.

Two of the new center’s initial areas of inquiry will address these critical gaps in knowledge.

One group of researchers will focus on understanding precisely what goes awry during critical windows in the first two years of life—a period marked by rapid brain development, great neuroplasticity and intense wiring of the brain’s circuits. This is also the typical window of autism diagnosis. The scientists will try to understand what molecular, cellular or neural-circuitry changes underlie autism-fueling processes during this stage. Identifying such critical changes can help illuminate how experiences modulate brain development in individuals with autism.

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Another group of researchers will examine the role of factors arising from organs and organ systems outside the brain that may drive autism risk. For example, the peripheral nervous system—made up of nerve cells throughout the body that act as nodes to collect and transmit signals to the brain—has emerged as a central player in the development of autism.

Heightened sensitivity to even light touch is a common feature in autism and one of the disorder’s many perplexing symptoms. Recent research from neurobiologists and geneticists at Harvard Medical School has not only identified the molecular changes that give rise to heightened touch sensitivity in autism-spectrum disorders but also points to a possible treatment for the condition.

First Large-Scale Study of Universal Screening for Autism Raises Critical Questions about Accuracy, Equity

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Researchers urge continued screening for all toddlers, while recommending changes to M-CHAT screening method to improve accuracy, address disparities

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Newswise — Philadelphia, September 27, 2019 –

In the first large, real-world study of universal screening for autism spectrum disorder (ASD) in toddlers, researchers at Children’s Hospital of Philadelphia (CHOP) have found that the most widely used and researched screening tool is less accurate than shown in previous studies conducted in research laboratory settings. The new study also revealed significant disparities in detecting early autism symptoms in minority, urban and low-income children. The findings were published online today in the journal Pediatrics.

The American Academy of Pediatrics (AAP) recommends screening all toddlers for ASD at their 18- and 24-month primary care check-ups using the Modified Checklist for Autism in Toddlers with Follow-Up (M-CHAT/F), a two-stage parent survey to determine whether a child may have autism, with the follow-up designed to eliminate false positives. However, most studies to evaluate the accuracy of the M-CHAT/F have been conducted in research settings rather than in real-world clinical settings. Therefore, very little was known about screening in the recommended primary care setting, nor about longer-term outcomes for children who screened negative on the M-CHAT/F. The CHOP study is the first to look at outcomes of truly universal screening in a real-world primary care setting.

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“As part of a large pediatric network implementing universal screening, we found ourselves in a unique position to find answers to critical questions about the accuracy of the M-CHAT, and to determine how many children are missed by early, universal screening,” said lead author Whitney Guthrie, PhD, a clinical psychologist specializing in early diagnosis at CHOP’s Center for Autism Research. “Early intervention has been shown to improve outcomes, potentially into adulthood. We know that early and accurate screening and diagnosis is the crucial first step in helping children access those effective, autism-specific therapies.”

The CHOP research team studied the electronic health records (EHR) of 25,999 patients screened in primary care using the M-CHAT/F between the ages of 16 and 26 months, and systematically followed these children until 4 through 8 years of age using the EHR. Ninety-one percent of these children were screened using the M-CHAT/F, meaning that nearly universal screening of all children in primary care was achieved.

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The study showed that the M-CHAT/F detected only about 40% of children who went on to be diagnosed with ASD. However, children who screened positive were diagnosed seven months earlier than those who screened negative, suggesting that early screening may facilitate early intervention. Overall, 2.2% of children in the study were ultimately diagnosed with ASD, which is consistent with the Centers for Disease Control and Prevention (CDC) estimates nationally.

“Although our findings reveal significant shortcomings in current screening tools, we want to be clear that we are not recommending that pediatricians stop universal screening,” said Guthrie. “Instead, clinicians should continue to screen using the M-CHAT/F, while being aware that this screening tool does miss some children with ASD. Any clinical or parental concerns should be taken seriously, and warrant continued surveillance even if a child screens negative on the M-CHAT/F. And of course, a screen positive on the M-CHAT/F warrants referral so that children with ASD can be diagnosed and receive early intervention.

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“Pediatricians should also be aware of disparities in screening practices and results in children of color and from low-income backgrounds.”

The CHOP study found that the 9% of children who did not receive screening at 18 or 24 months were disproportionately from racial minority groups; from non-English speaking households; and from households with lower median income and who receive Medicaid. When screening was administered, these same children were more likely to receive a false positive result. The M-CHAT was also less accurate in girls than in boys.

“Persistent racial and economic disparities in autism screening and diagnosis are a cause for great concern, and are consistent with previous research showing that black and Hispanic children tend to be diagnosed years later than white children,” said co-author Kate Wallis, MD, MPH, a developmental pediatrician and researcher at CHOP’s PolicyLab who is also studying disparities in referrals for autism services. “This study revealed important limitations and provides us with new knowledge that we can use to make critical improvements to autism screening tools and screening processes, so pediatricians can properly detect and support more children with autism and reduce disparities in diagnosis and care.”

Guthrie et al, “Accuracy of Autism Screening in a Large Pediatric Network.” Pediatrics, online 27 September 2019. DOI: 10.1542/peds.2019-0925.

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About Children’s Hospital of Philadelphia: Children’s Hospital of Philadelphia was founded in 1855 as the nation’s first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals, and pioneering major research initiatives, Children’s Hospital has fostered many discoveries that have benefited children worldwide.  Its pediatric research program is among the largest in the country.  In addition, its unique family-centered care and public service programs have brought the 564-bed hospital recognition as a leading advocate for children and adolescents. For more information, visit http://www.chop.edu

Jurassic fossil

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Discovery of a new fossil in China sheds light on when early mammal ancestors first evolved sophisticated thyroid bones that gave them the ability to swallow food like modern-day mammals.

The 165-million-year-old fossil of Microdocodongracilis, a tiny, shrew-like animal, shows the earliest example of modern hyoid bones in mammal evolution The hyoid bones link the back of the mouth, or pharynx, to the openings of the esophagus and the larynx. The hyoids of modern mammals, including humans, are arranged in a “U” shape, similar to the saddle seat of children’s swing, suspended by jointed segments from the skull. It helps us transport and swallow chewed food and liquid – a crucial function on which our livelihood depends.

Mammals as a whole are far more sophisticated than other living vertebrates in chewing up food and swallowing itone small lump at a time, instead of gulping down huge bites or whole prey like an alligator.

“Mammals have become so diverse today through the evolution of diverse ways to chew their food, weather it is insects, worms, meat, or plants. But no matter how differently mammals can chew, they all have to swallow in the same way,” said Zhe-Xi Luo, PhD, a professor of organismal biology and anatomy at the University of Chicago and the senior author of a new study of the fossil, published this week in Science.

“Essentially, the specialized way for mammals to chew and then swallow is all made possible by the agile hyoid bones at the back of the throat,” Luo said.

‘A pristine, beautiful fossil’

This modern hyoid apparatus is mobile and allows the throat muscles to control the intricate functions to transport and swallow chewed food or drink fluids. Other vertebrates also have hyoid bones, but their hyoids are simple and rod-like, without mobile joints between segments. They can only swallow food whole or in large chunks.

When and how this unique hyoid structure first appeared in mammals, however, has long been in question among paleontologists. In 2014, Chang-Fu Zhou, PhD, from the Paleontological Museum of Liaoning in China, the lead author of the new study, found a new fossil of Microdocodon preserved with delicate hyoid bones in the famous Jurassic Daohugou site of northeastern China.Soon afterwards, Luo and Thomas Martin from the University of Bonn, Germany, met up with Zhou in China to study the fossil.

“It is a pristine, beautiful fossil. I was amazed by the exquisite preservation of this tiny fossil at the first sight. We got a sense that it was unusual, but we were puzzled about what was unusual about it,”Luo said. “After taking detailed photographs and examining the fossil under a microscope, it dawned on us that this Jurassic animal has tiny hyoid bones much like those of modern mammals.”

This new insight gave Luo and his colleagues added context on how to study the new fossil. Microdocodonis a docodont, from an extinct lineage of near relatives of mammals from the Mesozoic Era called mammaliaforms. Previously, paleontologists anticipated that hyoids like this had to be there in all of these early mammals, but it was difficult to identify the delicate bones.  After finding them in Microdocodon, Luo and his collaborators have since found similar fossilized hyoid structures in other Mesozoic mammals.

“Now we are able for the first time to address how the crucial function for swallowing evolved among early mammals from the fossil record,” Luo said. “The tiny hyoids of Microdocodonare a big milestone for interpreting the evolution of mammalian feeding function.”

New insights on mammal evolution as a whole

Luo also worked with postdoctoral scholar Bhart-Anjan Bhullar, PhD, now on the faculty at Yale University, and April Neander, a scientific artist and expert on CT visualization of fossils at UChicago, to study casts of Microdocodonand reconstruct how it lived.

The jaw and middle ear of modern mammals are developed from (or around) the first pharyngeal arch, structures in a vertebrate embryo that develop into other recognizable bones and tissues. Meanwhile, the hyoids are developed separately from the second and the third pharyngeal arches. Microdocodonhas a primitive middle ear still attached to the jaw like that of other early mammals like cynodonts, which is unlike the ear of modern mammals. Yet its hyoids are already like those of modern mammals.

“Hyoids and ear bones are all derivatives of the primordial vertebrate mouth and gill skeleton, with which our earliest fishlike ancestors fed and respired,” Bhullar said. “The jointed, mobile hyoid of Microdocodoncoexists with an archaic middle ear — still attached to the lower jaw. Therefore, the building of the modern mammal entailed serial repurposing of a truly ancient system.”

The tiny, shrew-like creature likely weighed only 5 to 9 grams, with a slender body, and an exceptionally long tail. The dimensions of its limb bonesmatch up with those of modern tree-dwellers.

“Its limb bones are as thin as matchsticks, and yet this tiny Mesozoic mammal still lived an active life in trees,” Neander said.

The fossil beds that yielded Microdocodonare dated 164 to 166 million years old. Microdocodonco-existed with other docodonts like the semiaquatic Castorocauda, the subterranean Docofossor, the tree-dwellingAgilodocodon, as well as some mammaliaform gliders.

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The study, “New Jurassic mammaliaform sheds light on early evolution of mammal-like hyoid bones,” was published in Scienceon July 19, 2019. The research was supported by the University of Chicago Division of Biological Sciences (Luo); the Deutsche Forschungsgemeinschaft (Martin); and the National Natural Science Foundation and Ministry of Land Resources of China, Shenyang Normal University, and Shandong University of Science and Technology (Zhou).

Autism rates increasing fastest among black and Hispanic children

Autism rates among racial minorities in the United States have increased by double digits in recent years, with black rates now exceeding those of whites in most states and Hispanic rates growing faster than any other group, according to new University of Colorado Boulder research.

The study, published this month in the Journal of Autism and Developmental Disorders, also found that prevalence of autism among white youth is ticking up again, after flattening in the mid-2000s.

While some of the increase is due to more awareness and greater detection of the disorder among minority populations, other environmental factors are likely at play, the authors conclude.

“We found that rates among blacks and Hispanics are not only catching up to those of whites — which have historically been higher — but surpassing them,” said lead author Cynthia Nevison, an atmospheric research scientist with the Institute of Arctic and Alpine Research. “These results suggest that additional factors beyond just catch-up may be involved.”

For the study, Nevison teamed up with co-author Walter Zahorodny, an autism researcher and associate professor of pediatrics at Rutgers New Jersey Medical School, to analyze the most recent data available from the Individuals with Disabilities Education Act (IDEA) and the Autism and Developmental Disabilities Monitoring (ADDM) Network.

IDEA tracks prevalence, including information on race, among 3-to-5-year-olds across all 50 states annually. ADDM tracks prevalence among 8-year-olds in 11 states every two years.

The new study found that between birth year 2007 and 2013, autism rates among Hispanics age 3-5 rose 73%, while rates among blacks that age rose 44% and rates among whites rose 25%.

In 30 states, prevalence among blacks was higher than among whites by 2012.

In states with “high prevalence,” 1 in 79 whites, 1 in 68 blacks and 1 in 83 Hispanics born in 2013 have been diagnosed with autism by age 3-5.

Other states like Colorado fell in a “low-prevalence” category, but the authors cautioned that differences between states likely reflect differences in how well cases are reported by age 3-5. They also said the real prevalence is substantially higher, as many children are not diagnosed until later in life.

“There is no doubt that autism prevalence has increased significantly over the past 10 to 20 years, and based on what we have seen from this larger, more recent dataset it will continue to increase among all race and ethnicity groups in the coming years,” said Zahorodny.

In 2018, the Centers for Disease Control reported that about 1 in 59 children of all races have been diagnosed with autism and that rates had risen 15 percent overall from the previous two year period, largely due to better outreach and diagnosis among historically underdiagnosed minority populations. The new study challenges that explanation.

“Our data contradict the assertion that these increases are mainly due to better awareness among minority children,” said Zahorodny. “If the minority rates are exceeding the white rates that implies some difference in risk factor, either greater exposure to something in the environment or another trigger.”

Established risk factors associated with autism include advanced parental age, challenges to the immune system during pregnancy, genetic mutations, premature birth and being a twin or multiple.

The authors said that, based on current research, they cannot pinpoint what other environmental exposures might be factoring into the increases in autism. But they would like to see more research done in the field.

Sex, Lies, and Autism Research

 

How can we get tangible benefit from the millions we spend on autism science?.
Posted Nov 12, 2017

The U.S. government is the world’s biggest funder of autism research.  For the past decade I have had the honor of advising various agencies and committees on how that money should be spent. As an adult with autism, sometimes I’ve been pleased at our government’s choices. Other times I’ve been disappointed. Every now and then I turn to reflect: What have we gotten for our investment?
Autistic people and their parents agree on this: The hundreds of millions we’ve spent on autism research every year has provided precious little benefit to families and individuals living with autism today. Over the past decade the expenditures have run into the billions, yet our quality of life has hardly changed at all.
It would be one thing if massive help was just around the corner, but it’s not. There are no breakthrough medicines or treatments in the pipeline. Autistic people still suffer from GI pain, epilepsy, anxiety, depression, and a host of other issues at the same rates we did before any of this research was funded.
I don’t mean to suggest that nothing has been accomplished.  Scientists have learned a lot. They know more about the biological underpinnings of autism. Researchers have found hundreds of genetic variations that are implicated in autism. We’ve quantified how autistic people are different with thousands of studies of eye gaze, body movement, and more. Scientists are rightly proud of many of their discoveries, which do advance medical and scientific knowledge. What they don’t do is make our lives better today.
Why is that?
In the past I’ve written about the idea that taxpayer-funded research should be refocused on delivering benefit to autistic people. What I have not written about, is why that hasn’t happened, at the most fundamental level.
The answer is simple: Until quite recently, autistic people were not asked what we needed.
There are many reasons for that. Autism was first observed in children and no one expects children to have adult insight and self-reflection. When autism was recognized in adults, they were assumed to be too cognitively impaired to participate in conversations about their condition. Finally, in the spirit of the times, doctors often assumed that they knew best. They were the trained professionals, and we were the patients (or the inmates.)
So doctors studied every question they could imagine, and then some, seldom seeking our opinions except in answer to their research questions. They assumed they knew what “normal” was, and we weren’t it. Countless million$ went down the rabbit hole of causation studies, whether in genetics, vaccines, or other environmental factors. Don’t get me wrong—the knowledge we’ve gotten is valuable for science. It just did not help me, or any autistic person I know.
Millions more have been spent observing us and detailing exactly the ways in which we are abnormal. Only recently have some scientists began to consider a different idea: Perhaps “normal” is different for autistic people, and we are it. Again the studies enhanced the scientists’ knowledge but didn’t do much to help us autistics.
Then there are the educators and psychologists. They observed our “deviations” and then considered therapy to normalize us. That led to ABA and a host of other therapies. Some of those have indeed been beneficial, but the money spent on beneficial therapy is just a drop in the bucket when considering what we taxpayers have funded overall.
Want a different and better outcome? Ask actual autistic people.

We can tell you what our problems are, in many cases very eloquently. I’m not going to re-state all our needs here. I’ll tell you this: Whenever this topic comes up at IACC (the Federal committee that produces the strategic plan for autism for the U.S. government), the priorities of autistic people seem rather different from those of the researchers our government has been funding for so long.
Autistic people have many disparate needs, but they all boil down to one thing: We have major challenges living in American society. Medical problems, communication challenges, learning difficulties, relationship issues, and chronic unemployment are all big deals for us.  The issues are well laid out and many.
Before autistic people began speaking out in great numbers, all we had was parent advocacy. We should not dismiss that, and parents still have a role today, particularly in advocacy for small children and children who are older but unable to effectively advocate for themselves.
Even as we thank parents for their service, it’s time to recognize autistic voices (some of which belong to parents too) should be taking the lead.
As much as parents did for us, they also unwittingly contributed to harm. Parents misinterpreted harmless stimming, and encouraged therapists to suppress it, leaving us scarred in adulthood. Many autistics of my generation remember being placed into programs for troubled children with parental encouragement in hopes we’d become “more normal.” We didn’t. Parents have given us bleach enemas, and some of us have died from misguided chelation and other treatments to “cure” our autism.
I don’t blame parents for any of that. They did their best, given the knowledge of the day. But it’s a different day now. The children who grew up being “normalized” can talk about how it affected them, and parents and clinicians of today would be wise to listen.

Autistic voices are finally speaking in large numbers and it’s time to pay attention. No one else knows life with autism. Parents and nonautistic researchers are sometimes listening. Hard as this may be for them to hear, they are always guessing. With autistics speaking out all over the world, that’s no longer good enough.
For the first time, IACC has recognized this in the 2017 Strategic Plan Update. They say it’s time for a paradigm shift in how we do research. We need to focus on the needs of people living with autism today. That’s a realization that I appreciate, and it’s long overdue.
So what’s the answer to why we’ve gotten so little return on our autism research investment: No one asked the autistic people what we wanted. It’s that simple. Had we been able to articulate our challenges, with the framework of knowledge we have today, and had we been listened to, we’d be in a very different place today.
Today is gone, but tomorrow isn’t here yet, and it can be different.
(c) John Elder Robison
John Elder Robison is an autistic adult and advocate for people with neurological differences. He’s the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the U.S. Dept. of Health and Human Services and many other autism-related boards. He’s co-founder of the TCS Auto Program (a school for teens with developmental challenges), and he’s the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, Virginia, and a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts.
The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick. 

 John Elder RobisonJohn Elder Robison is the author of Raising CubbyLook Me in the Eye, My Life with Asperger’s, and Be Different – adventures of a free range Aspergian.  John’s books are sold in a dozen languages in over 65 countries. 

World’s Largest Wheelchair Painting

LOS ANGELES, Jan. 22, 2016 /– History will be in the making at Abilities Expo Los Angeles as hundreds of people with disabilities partake in the creation of the world’s largest wheelchair painting using innovative, adaptive art tools from Zot Artz Arts for All.
The annual expo, which takes place on February 5-7, 2016 at the Los Angeles Convention Center (West Hall A), will also feature an impressive line-up of exhibits, workshops, events, celebrities and activities to appeal to people of all ages with the full spectrum of disabilities—including physical, learning, developmental and sensory disabilities.
This artistic undertaking, named the Garden of PossAbilities, will begin as a 2300 square foot blank canvas on the Expo floor. Using unique rollers and stamps temporarily affixed to an individual’s wheelchair, the surface will be transformed into a masterpiece through layers of vibrant colors and patterns.
These adaptive art implements, designed by Zot Artz Owner Dwayne Szot, will allow people with disabilities to create art using their mobility device as a giant paint brush. In addition to participating in an historic event, artists will develop motor skills, social and emotional skills, concentration and self-esteem.
“The adaptive art events at Abilities Expo have always been enormously popular, so we are thrilled to offer this opportunity on such a grand, never-before-seen scale,” said Lew Shomer, co-owner of Abilities Expo. “Artists come away with a profound sense of accomplishment, which is a thrilling experience for them as well as for their caregivers to witness.”
The world’s largest wheelchair painting will unfold over the three-day Expo with up to 300 artists using 50 gallons of paint in a rainbow of glowing colors. Participation in creating the Garden of PossAbilities, as well as admission to the Expo, is free. Show hours are Friday 11 am to 5 pm, Saturday 10 am to 6 pm and Sunday 10 am to 2 pm.
“We at Zot Artz studio hope to create awareness and opportunities for individuals with disabilities while fostering creative expression,” said Szot. “Come and be a part of posterity, reaching beyond disabilities into abilities in a big, bold and beautiful way!”
For more information, visit www.abilities.com/losangeles.  

SOURCE Abilities Expo

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http://www.abilitiesexpo.com