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Natalie was not that kind of parent.[contextly_sidebar id=\"uOHnnzKYOmBeTGoKuvAQzedxhPZkeU99\"]\u003c/p>\n\u003cp>Even after the director and a teacher at her older son's day care sat her down one afternoon in 2011 to detail the 3-year-old's difficulty socializing and his tendency to chatter endlessly about topics his peers showed no interest in, she still didn't get the message.\u003c/p>\n\u003cp>Her son, the two educators eventually spelled out, might be on the autism spectrum.\u003c/p>\n\u003cp>\"I was in tears at the end,\" she says. \"When I got home, I was just devastated.\"\u003c/p>\n\u003cp>Natalie broke the news to her wife, Stephanie, whose mind fast-forwarded to a distressing future. Would her son — a squat, cheerful boy who, despite his affectionate nature, didn't have any playmates — ever be able to make friends?\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>When a doctor eventually confirmed he had an autism spectrum disorder, the diagnosis came with a suggestion: Perhaps the boy would benefit from Prozac when he turned 7.\u003c/p>\n\u003cp>\"That was when both of us fell apart in that meeting,\" Natalie says. For both parents, medication wasn't an option.\u003c/p>\n\u003cp>\"Prozac is a very powerful drug for adults. Why would you give it to a 7-year-old?\" Stephanie wondered after the doctor's visit. \"I welled up with all of this emotion. And I said I will not let that happen.\"[contextly_sidebar id=\"4sXIngF1woiIEbdfxhHX6lYzTUKP5vdD\"]\u003c/p>\n\u003cp>(To protect their privacy, we are only using Natalie's and Stephanie's first names. We are not naming their children.)\u003c/p>\n\u003cp>The fear of psychotropic drugs led the family to pursue alternative treatments for autism.\u003c/p>\n\u003cp>To start, they dropped gluten.\u003c/p>\n\u003cp>Then one day, as Natalie roamed the aisles of a gluten-free expo in a Chicago suburb not far from where the family lives, she came across a booth for a Brain Balance Achievement Center.\u003c/p>\n\u003cp>Natalie says the program claimed to help with disorders ranging from dyslexia to ADHD and autism. Best of all, it didn't involve prescription drugs.\u003c/p>\n\u003cp>\"We were very excited,\" Stephanie says. \"Maybe we found a solution that wasn't going to be about medicine. I was very, very hopeful.\"\u003c/p>\n\u003cp>\"\u003cstrong>It will completely, absolutely, 100 percent change your life\"\u003c/strong>\u003c/p>\n\u003cp>Natalie had stumbled upon one of 113 Brain Balance franchises across the country. Seventeen more are in the works. In the dozen years since its inception, Brain Balance says, it has helped roughly 25,000 children. The company says it is currently taking in over $50 million in annual revenue.\u003c/p>\n\u003cp>Although Brain Balance isn't the only purveyor of alternative approaches for developmental disorders in the U.S., the scale of the enterprise sets it apart. The company's approach is still relatively new and not widely known, meaning many experts in the field of childhood development have not vetted its effectiveness.\u003c/p>\n\u003cp>Brain Balance says its nonmedical and drug-free program helps children who struggle with ADHD, autism spectrum disorders and learning and processing disorders. The company says it addresses a child's challenges with a combination of physical exercises, nutritional guidance and academic training.\u003c/p>\n\u003cp>An NPR investigation of Brain Balance reveals a company whose promises have resonated with parents averse to medication. But Brain Balance also appears to have overstated the scientific evidence in its messaging to families, who can easily spend over $10,000 in six months, a common length of enrollment.\u003c/p>\n\u003cp>Brain Balance's metrics for consumer satisfaction are impressive. Customers rate the program, on average, an 8.5 on a 10-point scale in surveys, according to the company.\u003c/p>\n\u003cp>The ratings square with comments in online forums and in interviews NPR conducted with 18 parents who enrolled their children. Across the country, about three dozen centers are run by parents who began as happy customers.\u003c/p>\n\u003cp>\u003ca href=\"https://www.brainbalancecenters.com/\" target=\"_blank\" rel=\"noopener\">Brain Balance's website\u003c/a> is where caretakers encounter the company's strongest pitch: dozens upon dozens of \u003ca href=\"https://www.brainbalancecenters.com/our-stories/\" target=\"_blank\" rel=\"noopener\">parent testimonials\u003c/a>.\u003c/p>\n\u003cp>One of the company's \u003ca href=\"https://www.youtube.com/watch?v=OAaow0Kk0g8\" target=\"_blank\" rel=\"noopener\">television commercials\u003c/a> begins with a montage of formerly frustrated mothers. But, they all agree, Brain Balance put an end to their kids' challenges. One woman insists \"it will completely, absolutely, 100 percent change your life.\"\u003c/p>\n\u003cp>\u003cstrong>Autism \"can become a thing of the past\"\u003c/strong>\u003c/p>\n\u003cp>The man who created Brain Balance, Robert Melillo, is often introduced as \"Dr. Melillo\" in media appearances. He has a doctorate and an active license in chiropractic. He is also acknowledged as an expert in the field of \u003ca href=\"https://www.youtube.com/watch?v=3tQtAs3d05E\" target=\"_blank\" rel=\"noopener\">functional neurology\u003c/a>, chiropractic's \u003ca href=\"https://chiromt.biomedcentral.com/articles/10.1186/s12998-017-0151-1\" target=\"_blank\" rel=\"noopener\">controversial alternative\u003c/a> to mainstream neurology.\u003c/p>\n\u003cp>Melillo's \u003ca href=\"http://drrobertmelillo.com/about/\">biography\u003c/a> states he has master's degrees in neuroscience and clinical rehabilitation neuropsychology, though it does not say from where. A \u003ca href=\"http://members.fclb.org/staff_online/staff/uploads/individual/0_34022299_Melillo%20CV.pdf\" target=\"_blank\" rel=\"noopener\">curriculum vitae for Melillo\u003c/a> that NPR found on a website for chiropractic licensing boards says the master's in neuroscience came from the Carrick Institute for Graduate Studies, a chiropractic academy in Florida that isn't accredited by any of the agencies recognized by the Department of Education. His second master's degree is from a now-defunct program at Touro College, a private educational organization based in New York.[contextly_sidebar id=\"qHKhvNx0WtImHmg2ZAaY7Wq5YHOgE9Ba\"]\u003c/p>\n\u003cp>Melillo says it was during an intense period of research in the 1990s, while his own son struggled with attention issues, that he conceived of a single disorder to explain everything from autism to ADHD to dyslexia. He called it functional disconnection syndrome.\u003c/p>\n\u003cp>As he writes in his book, \u003cem>Disconnected Kids,\u003c/em> the syndrome occurs when \"areas in the brain, especially the two hemispheres of the brain, are not electrically balanced, or synchronized.\" The particulars of this imbalance are not clearly defined in the book, but numerous metaphors — some involving concert orchestras with bad timing or tuning — paint a picture of a child's brain unable to communicate with itself.\u003c/p>\n\u003cp>According to Melillo, a weak right hemisphere (the emotional half) can lead to autism and ADHD; a weak left hemisphere (the logical half) often causes learning disorders like dyslexia.\u003c/p>\n\u003cp>And he argues in the book that for people who follow his program, \"ADHD, dyslexia, and even autism, among others, can become a thing of the past.\"\u003c/p>\n\u003cp>He even appears to see his program as the answer to societal problems.\u003c/p>\n\u003cp>In February, one day after the mass shooting at Marjory Stoneman Douglas High School in Parkland, Fla., Melillo used his public Facebook page to envision a world where Brain Balance had reached the shooter.\u003c/p>\n\u003cp>\"I can't help but wonder if Brain Balance and Brain Integration could have prevented this tragedy,\" Melillo \u003ca href=\"https://www.facebook.com/DrRobertMelillo/photos/a.262064050637436.1073741828.262055963971578/902197553290746/?type=3&theater\" target=\"_blank\" rel=\"noopener\">wrote in the post\u003c/a> alongside a news report in which the shooter's relatives said the teenager had been diagnosed with autism and took medication.\u003c/p>\n\u003cp>\"We have to make the whole world more aware of Brain Imbalances and how they can be helped especially in kids,\" he added. \"This is my mission now.\"\u003c/p>\n\u003cp>\u003cstrong>What happens at Brain Balance\u003c/strong>\u003c/p>\n\u003cp>Stephanie and Natalie say they watched their older son from the other side of a two-way mirror as a Brain Balance staff member ran him through a series of tests during his baseline assessment. Later, they received his results: eight pages of ratings in unfamiliar categories.[contextly_sidebar id=\"AjksKQkvNBCw7ARjvhMRqANHG340k0k4\"]\u003c/p>\n\u003cp>\"I have two master's [degrees] and a Ph.D., and I needed them explained to me,\" Natalie says. Their son had a weak right hemisphere. Additionally, his \"frontal lobe acquisition\" was lacking. His primitive reflexes were also in bad shape, according to the assessment, portions of which were shared with NPR.\u003c/p>\n\u003cp>The center recommended six months of one-hour sessions three times a week, a common course of intervention.\u003c/p>\n\u003cp>Brain Balance's approach breaks down into three broad categories: academic, nutrition and sensory-motor.\u003c/p>\n\u003cp>The \u003ca href=\"https://www.brainbalancecenters.com/our-program/integrated-approach/academic/\" target=\"_blank\" rel=\"noopener\">academic exercises\u003c/a> focus on the same areas targeted by many after-school tutoring programs. The \u003ca href=\"https://www.brainbalancecenters.com/our-program/integrated-approach/nutrition/\" target=\"_blank\" rel=\"noopener\">nutritional component\u003c/a> recommends decreasing a child's intake of gluten, dairy and refined sugar.\u003c/p>\n\u003cp>The third, and most complex, prong of Brain Balance's intervention is its \u003ca href=\"https://www.brainbalancecenters.com/our-program/integrated-approach/sensory-motor/\" target=\"_blank\" rel=\"noopener\">sensory-motor training\u003c/a>, a diverse set of physical exercises. Parents and former employees describe activities like walking across balance beams, syncing actions with a computerized metronome and being spun in swivel chairs.[contextly_sidebar id=\"X9IS4CBjwH4LHwMmOzWNlEgWq0OztSoK\"]\u003c/p>\n\u003cp>Consistent with Melillo's theory, Brain Balance focuses much of its sensory-motor training on one-half of the child's body to send strengthening signals up and across to the supposedly weak, opposite hemisphere of the brain. (Much of the human brain indeed \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/23931149\">maps to the opposite\u003c/a> half of the human body.)\u003c/p>\n\u003cp>For instance, with a \"right brain weak\" child like Stephanie and Natalie's son, Brain Balance may have him wear a vibrating armband on his left biceps or eyeglasses that allow light only onto the left visual field. Or they may simply have him stand on his left leg.\u003c/p>\n\u003cp>It has not been uncommon for parents to enroll their children for at least six months, costing roughly $12,000. The company recently said its average enrollment is now about four months. Assessments and optional nutritional supplements and blood tests can add hundreds of dollars.\u003c/p>\n\u003cp>The program isn't covered by insurance. Brain Balance offers payment plans to parents who can't cover the cost immediately. As of publication, close to 200 families have solicited money from relatives and friends with \u003ca href=\"https://www.gofundme.com/mvc.php?route=category&term=%22brain%20balance%22\" target=\"_blank\" rel=\"noopener\">GoFundMe.com\u003c/a> campaigns.\u003c/p>\n\u003cp>Natalie and Stephanie were quoted $5,000 for their first three months, with the option to re-up for more after.\u003c/p>\n\u003cp>\"When you're talking about your child's self-esteem and knowing it's the most important thing, what are you going to do?\" Stephanie says. \"Maybe work a few more years and take a little bit out of your retirement so that maybe — if you nip this thing in the bud — he's able to have a better life going forward?\"\u003c/p>\n\u003cp>They dipped into their retirement savings and enrolled both their sons at a total cost of more than $15,000.\u003c/p>\n\u003cp>\"\u003cstrong>Cutting edge\" science\u003c/strong>\u003c/p>\n\u003cp>In numerous media appearances, Melillo hasn't been shy about publicizing the strength of his program's scientific evidence.\u003c/p>\n\u003cp>\"This isn't smoke and mirrors. This is real stuff. ... [Parents] are going to get real answers,\" Melillo \u003ca href=\"https://youtu.be/uaMbTtcFhvU?t=5m16s\" target=\"_blank\" rel=\"noopener\">told a radio host in 2010\u003c/a>. \"We've shown in our centers that we can correct these problems completely. We've proved that in research,\" he \u003ca href=\"https://youtu.be/7XJ8ouQgmtA?t=1m56s\" target=\"_blank\" rel=\"noopener\">said on TV in 2014\u003c/a>. \"We use really cutting-edge brain science to address the issue,\" he \u003ca href=\"https://youtu.be/KhmgeWUrkwo?t=49s\" target=\"_blank\" rel=\"noopener\">said in 2016\u003c/a>.\u003c/p>\n\u003cp>Yet a dozen experts in autism spectrum disorder, ADHD, dyslexia and childhood psychiatry interviewed by NPR all identified flaws in Brain Balance's approach.\u003c/p>\n\u003cp>They said the company's idea of imbalanced hemispheres was too simplistic and built upon the popular, discredited myth of the logical left brain and the intuitive right brain.[contextly_sidebar id=\"cWTrlOd6AlGxpGOvjVNIxgehcBIwY6uh\"]\u003c/p>\n\u003cp>\"It doesn't make sense,\" says \u003ca href=\"https://www.kennedykrieger.org/professional-training/training-disciplines/special-education-fellowship/leadership/mark-mahone-phd\" target=\"_blank\" rel=\"noopener\">Mark Mahone\u003c/a>, a pediatric neuropsychologist at the Kennedy Krieger Institute in Baltimore. \"In virtually every activity that one does ... both hemispheres of the brain are very, very active. ... It's not as simple as just being a left- or a right-hemisphere problem. Nothing is that simple.\"\u003c/p>\n\u003cp>As for the three-pronged Brain Balance regimen, experts NPR spoke with said there is no solid evidence suggesting gluten, dairy or sugar consumption affects ADHD, autism or dyslexia. And although physical exercise may have modest impacts on inattention and tutoring can help in school, these interventions can be found elsewhere for much less money. No expert suggested either as a front-line remedy for ADHD or autism.\u003c/p>\n\u003cp>Doctors and researchers NPR interviewed also questioned the diagnostic metrics Brain Balance uses.\u003c/p>\n\u003cp>For example, the company tests children for the primitive reflexes that drive infants to instinctively suckle or grab a finger. Natalie and Stephanie were told their son's lingering primitive reflexes were connected to his behavioral issues.\u003c/p>\n\u003cp>But multiple pediatricians said it is exceptionally rare for children older than 4 to retain any primitive reflexes.\u003c/p>\n\u003cp>\"Typically by 1 year of age these primitive reflexes have disappeared,\" says Dr. Andrew Adesman, a developmental pediatrician at Cohen Children's Medical Center of New York. \"The major exception is children who have cerebral palsy.\"\u003c/p>\n\u003cp>Melillo disagreed with the experts' opinions. \"I think they're completely wrong,\" he says.\u003c/p>\n\u003cp>\"Pediatricians rarely look at primitive reflexes after infancy, but if they did, they will find that, in many cases, they are still there,\" he wrote in an email.\u003c/p>\n\u003cp>Melillo also pushed back against the medical consensus that autism, ADHD and dyslexia aren't caused by hemispheric differences and that gluten doesn't affect such disorders.\u003c/p>\n\u003cp>\"I can show you a lot of papers that actually say that there is a relationship between food sensitivities, gluten sensitivity and different types of issues and conditions,\" he says. \"So again, it depends on the expert.\"\u003c/p>\n\u003cp>\"\u003cstrong>Evidence based\"?\u003c/strong>\u003c/p>\n\u003cp>There are two published studies of Brain Balance, which the company has said show that 81 percent of children with ADHD no longer displayed symptoms after three months in the program.\u003c/p>\n\u003cp>\"We have two studies now,\" Melillo said \u003ca href=\"https://youtu.be/AVp295htBVI?t=4m52s\" target=\"_blank\" rel=\"noopener\">on local TV\u003c/a> in 2013. \"So that means that we qualify as what we call 'evidence based' at this point.\"\u003c/p>\n\u003cp>Brain Balance \u003ca href=\"https://blog.brainbalancecenters.com/2013/07/control-study-shows-brain-balance-eliminates-adhd-symptoms\" target=\"_blank\" rel=\"noopener\">touted one of the studies on its blog\u003c/a> with the headline, \"Control Study Shows Brain Balance Eliminates ADHD Symptoms.\"\u003c/p>\n\u003cp>The studies, however, have serious scientific shortcomings.\u003c/p>\n\u003cp>Melillo, someone with a clear financial interest in the outcome, co-authored \u003ca href=\"http://www.carolinabraincenter.com/wp-content/uploads/2014/03/The_effect_of_hemisphere_specific_remediation_strategies_on_the_academic_performance_outcome_of_children_with_ADD_ADHD_.pdf\" target=\"_blank\" rel=\"noopener\">the first one\u003c/a>.\u003c/p>\n\u003cp>He also had parents rate their own children's improvement in ADHD symptoms but \u003ca href=\"https://www.documentcloud.org/documents/4420809-2010-BB-Study.html#document/p5/a415343\" target=\"_blank\" rel=\"noopener\">didn't compare\u003c/a> them with other kids who weren't in Brain Balance.[contextly_sidebar id=\"40It7ERz2X1PbU5Xz4PrJhqRCedRiEbu\"]\u003c/p>\n\u003cp>Without a control group, a study cannot definitively determine whether an intervention — a pill or procedure or program — is the reason for improvement or whether any change is simply the placebo effect.\u003c/p>\n\u003cp>The \u003ca href=\"http://www.feingold.org/Research/PDFstudies/Leisman2013.pdf\" target=\"_blank\" rel=\"noopener\">second study\u003c/a> did feature a control group of children with ADHD who didn't do Brain Balance. But it compared them with the same children from the first study published years earlier instead of randomly assigning children into simultaneous treatment and control groups.\u003c/p>\n\u003cp>\"My issue with these data is that there's no legitimate comparison for the treatment group, so we really don't know if [Brain Balance] helps,\" says Dr. Paul Wang, deputy director for clinical research at the Simons Foundation.\u003c/p>\n\u003cp>The experts NPR consulted took issue with other aspects of the studies as well.\u003c/p>\n\u003cp>The kids in the treatment and control groups \u003ca href=\"https://www.documentcloud.org/documents/4420810-2013-BB-Study.html#document/p3/a415322\" target=\"_blank\" rel=\"noopener\">differed in important ways\u003c/a>, the experts said, rendering comparisons between them less meaningful. The two groups weren't drawn from the same centers; all of the treatment group was medicated while only 60 percent of the controls were; and at baseline the controls scored more severe on an ADHD rating scale.\u003c/p>\n\u003cp>Curiously, even though the \u003ca href=\"https://www.documentcloud.org/documents/4420810-2013-BB-Study.html#document/p5/a429871\" target=\"_blank\" rel=\"noopener\">second\u003c/a> study reused the treatment group data from the \u003ca href=\"https://www.documentcloud.org/documents/4420809-2010-BB-Study.html#document/p6/a415327\" target=\"_blank\" rel=\"noopener\">first\u003c/a> study published years earlier, it reported different improvements on those same kids' test scores. The lead author on both studies, Gerry Leisman, a professor of neuro and rehabilitation sciences at the University of Haifa in Israel, explained one of the test score differences as a \"reviewer correction\" but did not provide explanations for any of the six remaining discrepancies.\u003c/p>\n\u003cp>Dr. James McGough, a professor of clinical psychiatry at UCLA's David Geffen Medical School, wasn't convinced by Brain Balance's published research. \"It means absolutely nothing. ... What we have here, in my view, is a marketing piece.\"[contextly_sidebar id=\"ul2FBC3owyMkUEM8UijiLxV0mmmsmz4s\"]\u003c/p>\n\u003cp>At least one state remains similarly unconvinced.\u003c/p>\n\u003cp>In 2015, Wisconsin's Department of Health Services determined Brain Balance had \"\u003ca href=\"https://www.dhs.wisconsin.gov/tiac/brain-balance-january-2015.pdf\" target=\"_blank\" rel=\"noopener\">insufficient evidence\u003c/a>\" to show it was a \"proven and effective treatment for individuals with autism spectrum disorder and/or other developmental disabilities,\" as the \u003cem>Milwaukee Journal-Sentinel \u003c/em>\u003ca href=\"http://archive.jsonline.com/business/company-pushes-brain-balancing-program-for-learning-disabilities-evidence-lacking-b99551698z1-324854621.html\">reported\u003c/a>. The state assigned Brain Balance to the second-lowest ranking on its five-tier system. The only lower ranking is for \"potentially harmful\" treatments.\u003c/p>\n\u003cp>\u003cstrong>Brain Balance defends its approach\u003c/strong>\u003c/p>\n\u003cp>Asked by NPR why Brain Balance hadn't been tested more thoroughly before its nationwide expansion began a decade ago, Melillo says the company was \"faced with a dilemma.\" While he did feel an obligation to validate his approach, he says he knew Brain Balance worked and didn't want to deprive his clients of its benefits while waiting for clinical trials. \"All these 25,000 families that we've helped, are they left suffering for years on end?\"\u003c/p>\n\u003cp>\"What was done to date was commensurate to the resources that we had,\" says Aleem Choudhry, the chairman of Brain Balance and a managing member at Crane Street Capital, which invested in the franchise in 2013.\u003c/p>\n\u003cp>The company says ADHD was the only disorder to be studied thus far because — contrary to the opinion of all the experts contacted by NPR — it is neurologically equivalent to others like autism, dyslexia and OCD. If Brain Balance improves ADHD symptoms, Melillo says, \"then we believe that we're going to get the same results in the other types of issues, because they're really the same problem.\"\u003c/p>\n\u003cp>Melillo also says the company's proprietary records from about 80,000 before-and-after client assessments qualify as corroboration. Melillo disputed the idea that his company's own data may require third-party review. \"Data is data,\" he says. \"There's no bias in the way we collect this.\"\u003c/p>\n\u003cp>A new study of a \u003ca href=\"https://drteicher.wordpress.com/2015/11/20/non-pharmacological-treatment-for-adhd/\" target=\"_blank\" rel=\"noopener\">computerized version of Brain Balance\u003c/a> is underway at a Harvard-affiliated hospital and features a concurrent control group of children.\u003c/p>\n\u003cp>But Melillo says that questions about the research behind Brain Balance ultimately miss a larger, more important point.\u003c/p>\n\u003cp>\"Families are out there struggling and suffering, and they don't really give a crap about the data or the research, to be quite honest,\" he says. \"When they go through it and they see the difference in their child ... that's what matters to them.\"\u003c/p>\n\u003cp>Choudhry, the company's chairman, later clarified that \"we very much do care about the data.\"\u003c/p>\n\u003cp>\u003cstrong>No easy answer\u003c/strong>\u003c/p>\n\u003cp>With both their boys enrolled in Brain Balance, the routine for Stephanie and Natalie's family was frantic.\u003c/p>\n\u003cp>Three times a week, Stephanie would ferry their sons against traffic to and from their sessions. Family dinners became more rushed. Soccer and swimming were abandoned.\u003c/p>\n\u003cp>Lost time is often a hidden cost of any form of treatment.\u003c/p>\n\u003cp>The mothers began observing changes in their older son. They say his previously weak sense of smell suddenly blossomed, first for brownies and then other foods. And he became less obsessed with characters he had repetitively sketched in his notebooks and imbued with rich inner lives. (His parents are torn as to whether this was a positive development.) He also advanced in certain Brain Balance measures, including his primitive reflexes.\u003c/p>\n\u003cp>\"It's not that the needle didn't move on some of those dimensions,\" says Natalie. \"But if you step back at the 10,000- or 100,000-foot view and say, 'Is this kid different in a way that his life is going to be better or altered?' the answer is 'No.' OK, so now he can smell brownies that he couldn't smell before but is his life different?\"\u003c/p>\n\u003cp>She says she and her wife began to feel discouraged, thinking about the \"aura around this program that says your child's going to be different and better-adjusted.\"\u003c/p>\n\u003cp>Eric Rossen of the National Association of School Psychologists isn't surprised by Brain Balance's popularity as an option beyond what schools and insurance will cover.\u003c/p>\n\u003cp>He says many parents are frustrated by mainstream medicine's limits when it comes to complex disorders like autism. And schools are sometimes too strapped for resources to provide students with learning disorders all the help their parents may want.\u003c/p>\n\u003cp>\"Most parents will say they would die for their children,\" Rossen says. \"So to say, 'I want to provide some therapy and pay a few thousand dollars' is quite short of dying for them and it's totally reasonable.\"[contextly_sidebar id=\"trKt9lVGGL2hYvUb63mGVzd7zTqN7BTZ\"]\u003c/p>\n\u003cp>But he says \"the problem is they are easy prey for certain providers that can make promises that cannot necessarily be kept or are not necessarily backed by scientific data.\"\u003c/p>\n\u003cp>For parents looking to find evidence-based third-party interventions, experts suggest the \u003ca href=\"https://ies.ed.gov/ncee/wwc/\" target=\"_blank\" rel=\"noopener\">What Works Clearinghouse\u003c/a>, which is backed by the Department of Education, or the Substance Abuse and Mental Health Services Administration's \u003ca href=\"https://www.samhsa.gov/nrepp\" target=\"_blank\" rel=\"noopener\">own resource\u003c/a>.\u003c/p>\n\u003cp>Brain Balance's protocol doesn't appear to pose any physical or developmental harms to children. Instead, the program's costs may come in other ways: siphoning away time and money, and prolonging the hope in some parents that their child may one day shed his or her disorder.\u003c/p>\n\u003cp>Dr. Susan Hyman, a professor of pediatrics at the University of Rochester who has studied autism treatments for decades, says many alternative providers do this by offering an unrealistically simple solution.\u003c/p>\n\u003cp>\"If you were to come to a traditional provider who said, 'You know I'm going to have you work really, really, really hard. ... I might have some drugs. Drugs have side effects. And 90 percent of the time, as an adult, he is still going to have autism,' that's a far less attractive message than 'I can help you.' \"\u003c/p>\n\u003cp>\u003cstrong>Beyond Brain Balance\u003c/strong>\u003c/p>\n\u003cp>By the end of their older son's second three-month session at Brain Balance, Stephanie and Natalie had completely soured on it. They stopped believing that vibrating armbands and spinning in swivel chairs would translate to social success.\u003c/p>\n\u003cp>They decided to not continue.\u003c/p>\n\u003cp>Later, in second grade, their older son began to work with a social worker at school who taught him how to have socially acceptable conversation with his peers.\u003c/p>\n\u003cp>And Stephanie and Natalie did something else — the unthinkable.\u003c/p>\n\u003cp>They put their son on a medication called Strattera. Calibrating the proper dosage with tolerable side effects was a drawn-out process, but eventually they reached an equilibrium. Their older son ended up with a new diagnosis that has some overlap with autism but is more consistent with ADHD, which the medication treats.[contextly_sidebar id=\"Mk0Q9RIDdUaNoWDya3YvMRUEK35nUdWD\"]\u003c/p>\n\u003cp>Today, he seems to be navigating the world more successfully than before.\u003c/p>\n\u003cp>On a Saturday last August, their older son — who once plaintively asked his parents, \"Why aren't I invited to birthday parties?\" — had just wrapped up a party to celebrate turning 10 years old.\u003c/p>\n\u003cp>Natalie and Stephanie had pizzas delivered and rented a truck lined with pleather sofas on one side and video game systems along the other. The children sat in pairs and used their greasy fingers to dispatch their avatars against each other in virtual battle.\u003c/p>\n\u003cp>\"They were yelling my son's name and saying 'Come play with me! Come play with me!' \" recalls Natalie.\u003c/p>\n\u003cp>The birthday boy says he invited almost all of his friends, from school and camp, and all but one showed up, which was more than he could have ever imagined before.\u003c/p>\n\u003cp>\"Because,\" he says before pausing. \"I haven't had friends for a bit. Until I got my medicine. I got some treatment. I got help. Now, I have tons of friends.\"\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>The reporter, Chris Benderev, can be contacted at cbenderev@npr.org.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=%27Cutting+Edge%27+Program+For+Children+With+Autism+And+ADHD+Rests+On+Razor-Thin+Evidence&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n","blocks":[],"excerpt":"With 113 locations in the U.S., Brain Balance says its drug-free approach has helped tens of thousands of children. But experts say there's insufficient proof of its effectiveness.","status":"publish","parent":0,"modified":1529535202,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":118,"wordCount":3841},"headData":{"title":"Little Evidence for Alternative Autism Treatment Sold by 'Brain Balance' Franchise | KQED","description":"With 113 locations in the U.S., Brain Balance says its drug-free approach has helped tens of thousands of children. But experts say there's insufficient proof of its effectiveness.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Little Evidence for Alternative Autism Treatment Sold by 'Brain Balance' Franchise","datePublished":"2018-06-20T18:27:45.000Z","dateModified":"2018-06-20T22:53:22.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"442896 https://ww2.kqed.org/futureofyou/?p=442896","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/06/20/little-evidence-for-brain-balances-alternative-autism-treatment/","disqusTitle":"Little Evidence for Alternative Autism Treatment Sold by 'Brain Balance' Franchise","source":"Health","nprByline":"Chris Benderev, NPR","nprImageAgency":"Hokyoung Kim for NPR","nprStoryId":"616805015","nprApiLink":"http://api.npr.org/query?id=616805015&apiKey=MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004","nprHtmlLink":"https://www.npr.org/sections/health-shots/2018/06/18/616805015/cutting-edge-program-for-children-with-autism-and-adhd-rests-on-razor-thin-evide?ft=nprml&f=616805015","nprRetrievedStory":"1","nprPubDate":"Tue, 19 Jun 2018 15:49:00 -0400","nprStoryDate":"Mon, 18 Jun 2018 10:11:00 -0400","nprLastModifiedDate":"Tue, 19 Jun 2018 16:23:49 -0400","nprAudio":"https://ondemand.npr.org/anon.npr-mp3/npr/atc/2018/06/20180618_atc_cutting_edge_program_for_children_with_autism_and_adhd_rests_on_razor-thin_evidence.mp3?orgId=1&topicId=1128&d=735&p=2&story=616805015&ft=nprml&f=616805015","nprAudioM3u":"http://api.npr.org/m3u/1621127212-dbd771.m3u?orgId=1&topicId=1128&d=735&p=2&story=616805015&ft=nprml&f=616805015","path":"/futureofyou/442896/little-evidence-for-brain-balances-alternative-autism-treatment","audioUrl":"https://ondemand.npr.org/anon.npr-mp3/npr/atc/2018/06/20180618_atc_cutting_edge_program_for_children_with_autism_and_adhd_rests_on_razor-thin_evidence.mp3?orgId=1&topicId=1128&d=735&p=2&story=616805015&ft=nprml&f=616805015","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Some parents see it coming. Natalie was not that kind of parent.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Even after the director and a teacher at her older son's day care sat her down one afternoon in 2011 to detail the 3-year-old's difficulty socializing and his tendency to chatter endlessly about topics his peers showed no interest in, she still didn't get the message.\u003c/p>\n\u003cp>Her son, the two educators eventually spelled out, might be on the autism spectrum.\u003c/p>\n\u003cp>\"I was in tears at the end,\" she says. \"When I got home, I was just devastated.\"\u003c/p>\n\u003cp>Natalie broke the news to her wife, Stephanie, whose mind fast-forwarded to a distressing future. Would her son — a squat, cheerful boy who, despite his affectionate nature, didn't have any playmates — ever be able to make friends?\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>When a doctor eventually confirmed he had an autism spectrum disorder, the diagnosis came with a suggestion: Perhaps the boy would benefit from Prozac when he turned 7.\u003c/p>\n\u003cp>\"That was when both of us fell apart in that meeting,\" Natalie says. For both parents, medication wasn't an option.\u003c/p>\n\u003cp>\"Prozac is a very powerful drug for adults. Why would you give it to a 7-year-old?\" Stephanie wondered after the doctor's visit. \"I welled up with all of this emotion. And I said I will not let that happen.\"\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>(To protect their privacy, we are only using Natalie's and Stephanie's first names. We are not naming their children.)\u003c/p>\n\u003cp>The fear of psychotropic drugs led the family to pursue alternative treatments for autism.\u003c/p>\n\u003cp>To start, they dropped gluten.\u003c/p>\n\u003cp>Then one day, as Natalie roamed the aisles of a gluten-free expo in a Chicago suburb not far from where the family lives, she came across a booth for a Brain Balance Achievement Center.\u003c/p>\n\u003cp>Natalie says the program claimed to help with disorders ranging from dyslexia to ADHD and autism. Best of all, it didn't involve prescription drugs.\u003c/p>\n\u003cp>\"We were very excited,\" Stephanie says. \"Maybe we found a solution that wasn't going to be about medicine. I was very, very hopeful.\"\u003c/p>\n\u003cp>\"\u003cstrong>It will completely, absolutely, 100 percent change your life\"\u003c/strong>\u003c/p>\n\u003cp>Natalie had stumbled upon one of 113 Brain Balance franchises across the country. Seventeen more are in the works. In the dozen years since its inception, Brain Balance says, it has helped roughly 25,000 children. The company says it is currently taking in over $50 million in annual revenue.\u003c/p>\n\u003cp>Although Brain Balance isn't the only purveyor of alternative approaches for developmental disorders in the U.S., the scale of the enterprise sets it apart. The company's approach is still relatively new and not widely known, meaning many experts in the field of childhood development have not vetted its effectiveness.\u003c/p>\n\u003cp>Brain Balance says its nonmedical and drug-free program helps children who struggle with ADHD, autism spectrum disorders and learning and processing disorders. The company says it addresses a child's challenges with a combination of physical exercises, nutritional guidance and academic training.\u003c/p>\n\u003cp>An NPR investigation of Brain Balance reveals a company whose promises have resonated with parents averse to medication. But Brain Balance also appears to have overstated the scientific evidence in its messaging to families, who can easily spend over $10,000 in six months, a common length of enrollment.\u003c/p>\n\u003cp>Brain Balance's metrics for consumer satisfaction are impressive. Customers rate the program, on average, an 8.5 on a 10-point scale in surveys, according to the company.\u003c/p>\n\u003cp>The ratings square with comments in online forums and in interviews NPR conducted with 18 parents who enrolled their children. Across the country, about three dozen centers are run by parents who began as happy customers.\u003c/p>\n\u003cp>\u003ca href=\"https://www.brainbalancecenters.com/\" target=\"_blank\" rel=\"noopener\">Brain Balance's website\u003c/a> is where caretakers encounter the company's strongest pitch: dozens upon dozens of \u003ca href=\"https://www.brainbalancecenters.com/our-stories/\" target=\"_blank\" rel=\"noopener\">parent testimonials\u003c/a>.\u003c/p>\n\u003cp>One of the company's \u003ca href=\"https://www.youtube.com/watch?v=OAaow0Kk0g8\" target=\"_blank\" rel=\"noopener\">television commercials\u003c/a> begins with a montage of formerly frustrated mothers. But, they all agree, Brain Balance put an end to their kids' challenges. One woman insists \"it will completely, absolutely, 100 percent change your life.\"\u003c/p>\n\u003cp>\u003cstrong>Autism \"can become a thing of the past\"\u003c/strong>\u003c/p>\n\u003cp>The man who created Brain Balance, Robert Melillo, is often introduced as \"Dr. Melillo\" in media appearances. He has a doctorate and an active license in chiropractic. He is also acknowledged as an expert in the field of \u003ca href=\"https://www.youtube.com/watch?v=3tQtAs3d05E\" target=\"_blank\" rel=\"noopener\">functional neurology\u003c/a>, chiropractic's \u003ca href=\"https://chiromt.biomedcentral.com/articles/10.1186/s12998-017-0151-1\" target=\"_blank\" rel=\"noopener\">controversial alternative\u003c/a> to mainstream neurology.\u003c/p>\n\u003cp>Melillo's \u003ca href=\"http://drrobertmelillo.com/about/\">biography\u003c/a> states he has master's degrees in neuroscience and clinical rehabilitation neuropsychology, though it does not say from where. A \u003ca href=\"http://members.fclb.org/staff_online/staff/uploads/individual/0_34022299_Melillo%20CV.pdf\" target=\"_blank\" rel=\"noopener\">curriculum vitae for Melillo\u003c/a> that NPR found on a website for chiropractic licensing boards says the master's in neuroscience came from the Carrick Institute for Graduate Studies, a chiropractic academy in Florida that isn't accredited by any of the agencies recognized by the Department of Education. His second master's degree is from a now-defunct program at Touro College, a private educational organization based in New York.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Melillo says it was during an intense period of research in the 1990s, while his own son struggled with attention issues, that he conceived of a single disorder to explain everything from autism to ADHD to dyslexia. He called it functional disconnection syndrome.\u003c/p>\n\u003cp>As he writes in his book, \u003cem>Disconnected Kids,\u003c/em> the syndrome occurs when \"areas in the brain, especially the two hemispheres of the brain, are not electrically balanced, or synchronized.\" The particulars of this imbalance are not clearly defined in the book, but numerous metaphors — some involving concert orchestras with bad timing or tuning — paint a picture of a child's brain unable to communicate with itself.\u003c/p>\n\u003cp>According to Melillo, a weak right hemisphere (the emotional half) can lead to autism and ADHD; a weak left hemisphere (the logical half) often causes learning disorders like dyslexia.\u003c/p>\n\u003cp>And he argues in the book that for people who follow his program, \"ADHD, dyslexia, and even autism, among others, can become a thing of the past.\"\u003c/p>\n\u003cp>He even appears to see his program as the answer to societal problems.\u003c/p>\n\u003cp>In February, one day after the mass shooting at Marjory Stoneman Douglas High School in Parkland, Fla., Melillo used his public Facebook page to envision a world where Brain Balance had reached the shooter.\u003c/p>\n\u003cp>\"I can't help but wonder if Brain Balance and Brain Integration could have prevented this tragedy,\" Melillo \u003ca href=\"https://www.facebook.com/DrRobertMelillo/photos/a.262064050637436.1073741828.262055963971578/902197553290746/?type=3&theater\" target=\"_blank\" rel=\"noopener\">wrote in the post\u003c/a> alongside a news report in which the shooter's relatives said the teenager had been diagnosed with autism and took medication.\u003c/p>\n\u003cp>\"We have to make the whole world more aware of Brain Imbalances and how they can be helped especially in kids,\" he added. \"This is my mission now.\"\u003c/p>\n\u003cp>\u003cstrong>What happens at Brain Balance\u003c/strong>\u003c/p>\n\u003cp>Stephanie and Natalie say they watched their older son from the other side of a two-way mirror as a Brain Balance staff member ran him through a series of tests during his baseline assessment. Later, they received his results: eight pages of ratings in unfamiliar categories.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>\"I have two master's [degrees] and a Ph.D., and I needed them explained to me,\" Natalie says. Their son had a weak right hemisphere. Additionally, his \"frontal lobe acquisition\" was lacking. His primitive reflexes were also in bad shape, according to the assessment, portions of which were shared with NPR.\u003c/p>\n\u003cp>The center recommended six months of one-hour sessions three times a week, a common course of intervention.\u003c/p>\n\u003cp>Brain Balance's approach breaks down into three broad categories: academic, nutrition and sensory-motor.\u003c/p>\n\u003cp>The \u003ca href=\"https://www.brainbalancecenters.com/our-program/integrated-approach/academic/\" target=\"_blank\" rel=\"noopener\">academic exercises\u003c/a> focus on the same areas targeted by many after-school tutoring programs. The \u003ca href=\"https://www.brainbalancecenters.com/our-program/integrated-approach/nutrition/\" target=\"_blank\" rel=\"noopener\">nutritional component\u003c/a> recommends decreasing a child's intake of gluten, dairy and refined sugar.\u003c/p>\n\u003cp>The third, and most complex, prong of Brain Balance's intervention is its \u003ca href=\"https://www.brainbalancecenters.com/our-program/integrated-approach/sensory-motor/\" target=\"_blank\" rel=\"noopener\">sensory-motor training\u003c/a>, a diverse set of physical exercises. Parents and former employees describe activities like walking across balance beams, syncing actions with a computerized metronome and being spun in swivel chairs.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Consistent with Melillo's theory, Brain Balance focuses much of its sensory-motor training on one-half of the child's body to send strengthening signals up and across to the supposedly weak, opposite hemisphere of the brain. (Much of the human brain indeed \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/23931149\">maps to the opposite\u003c/a> half of the human body.)\u003c/p>\n\u003cp>For instance, with a \"right brain weak\" child like Stephanie and Natalie's son, Brain Balance may have him wear a vibrating armband on his left biceps or eyeglasses that allow light only onto the left visual field. Or they may simply have him stand on his left leg.\u003c/p>\n\u003cp>It has not been uncommon for parents to enroll their children for at least six months, costing roughly $12,000. The company recently said its average enrollment is now about four months. Assessments and optional nutritional supplements and blood tests can add hundreds of dollars.\u003c/p>\n\u003cp>The program isn't covered by insurance. Brain Balance offers payment plans to parents who can't cover the cost immediately. As of publication, close to 200 families have solicited money from relatives and friends with \u003ca href=\"https://www.gofundme.com/mvc.php?route=category&term=%22brain%20balance%22\" target=\"_blank\" rel=\"noopener\">GoFundMe.com\u003c/a> campaigns.\u003c/p>\n\u003cp>Natalie and Stephanie were quoted $5,000 for their first three months, with the option to re-up for more after.\u003c/p>\n\u003cp>\"When you're talking about your child's self-esteem and knowing it's the most important thing, what are you going to do?\" Stephanie says. \"Maybe work a few more years and take a little bit out of your retirement so that maybe — if you nip this thing in the bud — he's able to have a better life going forward?\"\u003c/p>\n\u003cp>They dipped into their retirement savings and enrolled both their sons at a total cost of more than $15,000.\u003c/p>\n\u003cp>\"\u003cstrong>Cutting edge\" science\u003c/strong>\u003c/p>\n\u003cp>In numerous media appearances, Melillo hasn't been shy about publicizing the strength of his program's scientific evidence.\u003c/p>\n\u003cp>\"This isn't smoke and mirrors. This is real stuff. ... [Parents] are going to get real answers,\" Melillo \u003ca href=\"https://youtu.be/uaMbTtcFhvU?t=5m16s\" target=\"_blank\" rel=\"noopener\">told a radio host in 2010\u003c/a>. \"We've shown in our centers that we can correct these problems completely. We've proved that in research,\" he \u003ca href=\"https://youtu.be/7XJ8ouQgmtA?t=1m56s\" target=\"_blank\" rel=\"noopener\">said on TV in 2014\u003c/a>. \"We use really cutting-edge brain science to address the issue,\" he \u003ca href=\"https://youtu.be/KhmgeWUrkwo?t=49s\" target=\"_blank\" rel=\"noopener\">said in 2016\u003c/a>.\u003c/p>\n\u003cp>Yet a dozen experts in autism spectrum disorder, ADHD, dyslexia and childhood psychiatry interviewed by NPR all identified flaws in Brain Balance's approach.\u003c/p>\n\u003cp>They said the company's idea of imbalanced hemispheres was too simplistic and built upon the popular, discredited myth of the logical left brain and the intuitive right brain.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>\"It doesn't make sense,\" says \u003ca href=\"https://www.kennedykrieger.org/professional-training/training-disciplines/special-education-fellowship/leadership/mark-mahone-phd\" target=\"_blank\" rel=\"noopener\">Mark Mahone\u003c/a>, a pediatric neuropsychologist at the Kennedy Krieger Institute in Baltimore. \"In virtually every activity that one does ... both hemispheres of the brain are very, very active. ... It's not as simple as just being a left- or a right-hemisphere problem. Nothing is that simple.\"\u003c/p>\n\u003cp>As for the three-pronged Brain Balance regimen, experts NPR spoke with said there is no solid evidence suggesting gluten, dairy or sugar consumption affects ADHD, autism or dyslexia. And although physical exercise may have modest impacts on inattention and tutoring can help in school, these interventions can be found elsewhere for much less money. No expert suggested either as a front-line remedy for ADHD or autism.\u003c/p>\n\u003cp>Doctors and researchers NPR interviewed also questioned the diagnostic metrics Brain Balance uses.\u003c/p>\n\u003cp>For example, the company tests children for the primitive reflexes that drive infants to instinctively suckle or grab a finger. Natalie and Stephanie were told their son's lingering primitive reflexes were connected to his behavioral issues.\u003c/p>\n\u003cp>But multiple pediatricians said it is exceptionally rare for children older than 4 to retain any primitive reflexes.\u003c/p>\n\u003cp>\"Typically by 1 year of age these primitive reflexes have disappeared,\" says Dr. Andrew Adesman, a developmental pediatrician at Cohen Children's Medical Center of New York. \"The major exception is children who have cerebral palsy.\"\u003c/p>\n\u003cp>Melillo disagreed with the experts' opinions. \"I think they're completely wrong,\" he says.\u003c/p>\n\u003cp>\"Pediatricians rarely look at primitive reflexes after infancy, but if they did, they will find that, in many cases, they are still there,\" he wrote in an email.\u003c/p>\n\u003cp>Melillo also pushed back against the medical consensus that autism, ADHD and dyslexia aren't caused by hemispheric differences and that gluten doesn't affect such disorders.\u003c/p>\n\u003cp>\"I can show you a lot of papers that actually say that there is a relationship between food sensitivities, gluten sensitivity and different types of issues and conditions,\" he says. \"So again, it depends on the expert.\"\u003c/p>\n\u003cp>\"\u003cstrong>Evidence based\"?\u003c/strong>\u003c/p>\n\u003cp>There are two published studies of Brain Balance, which the company has said show that 81 percent of children with ADHD no longer displayed symptoms after three months in the program.\u003c/p>\n\u003cp>\"We have two studies now,\" Melillo said \u003ca href=\"https://youtu.be/AVp295htBVI?t=4m52s\" target=\"_blank\" rel=\"noopener\">on local TV\u003c/a> in 2013. \"So that means that we qualify as what we call 'evidence based' at this point.\"\u003c/p>\n\u003cp>Brain Balance \u003ca href=\"https://blog.brainbalancecenters.com/2013/07/control-study-shows-brain-balance-eliminates-adhd-symptoms\" target=\"_blank\" rel=\"noopener\">touted one of the studies on its blog\u003c/a> with the headline, \"Control Study Shows Brain Balance Eliminates ADHD Symptoms.\"\u003c/p>\n\u003cp>The studies, however, have serious scientific shortcomings.\u003c/p>\n\u003cp>Melillo, someone with a clear financial interest in the outcome, co-authored \u003ca href=\"http://www.carolinabraincenter.com/wp-content/uploads/2014/03/The_effect_of_hemisphere_specific_remediation_strategies_on_the_academic_performance_outcome_of_children_with_ADD_ADHD_.pdf\" target=\"_blank\" rel=\"noopener\">the first one\u003c/a>.\u003c/p>\n\u003cp>He also had parents rate their own children's improvement in ADHD symptoms but \u003ca href=\"https://www.documentcloud.org/documents/4420809-2010-BB-Study.html#document/p5/a415343\" target=\"_blank\" rel=\"noopener\">didn't compare\u003c/a> them with other kids who weren't in Brain Balance.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Without a control group, a study cannot definitively determine whether an intervention — a pill or procedure or program — is the reason for improvement or whether any change is simply the placebo effect.\u003c/p>\n\u003cp>The \u003ca href=\"http://www.feingold.org/Research/PDFstudies/Leisman2013.pdf\" target=\"_blank\" rel=\"noopener\">second study\u003c/a> did feature a control group of children with ADHD who didn't do Brain Balance. But it compared them with the same children from the first study published years earlier instead of randomly assigning children into simultaneous treatment and control groups.\u003c/p>\n\u003cp>\"My issue with these data is that there's no legitimate comparison for the treatment group, so we really don't know if [Brain Balance] helps,\" says Dr. Paul Wang, deputy director for clinical research at the Simons Foundation.\u003c/p>\n\u003cp>The experts NPR consulted took issue with other aspects of the studies as well.\u003c/p>\n\u003cp>The kids in the treatment and control groups \u003ca href=\"https://www.documentcloud.org/documents/4420810-2013-BB-Study.html#document/p3/a415322\" target=\"_blank\" rel=\"noopener\">differed in important ways\u003c/a>, the experts said, rendering comparisons between them less meaningful. The two groups weren't drawn from the same centers; all of the treatment group was medicated while only 60 percent of the controls were; and at baseline the controls scored more severe on an ADHD rating scale.\u003c/p>\n\u003cp>Curiously, even though the \u003ca href=\"https://www.documentcloud.org/documents/4420810-2013-BB-Study.html#document/p5/a429871\" target=\"_blank\" rel=\"noopener\">second\u003c/a> study reused the treatment group data from the \u003ca href=\"https://www.documentcloud.org/documents/4420809-2010-BB-Study.html#document/p6/a415327\" target=\"_blank\" rel=\"noopener\">first\u003c/a> study published years earlier, it reported different improvements on those same kids' test scores. The lead author on both studies, Gerry Leisman, a professor of neuro and rehabilitation sciences at the University of Haifa in Israel, explained one of the test score differences as a \"reviewer correction\" but did not provide explanations for any of the six remaining discrepancies.\u003c/p>\n\u003cp>Dr. James McGough, a professor of clinical psychiatry at UCLA's David Geffen Medical School, wasn't convinced by Brain Balance's published research. \"It means absolutely nothing. ... What we have here, in my view, is a marketing piece.\"\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>At least one state remains similarly unconvinced.\u003c/p>\n\u003cp>In 2015, Wisconsin's Department of Health Services determined Brain Balance had \"\u003ca href=\"https://www.dhs.wisconsin.gov/tiac/brain-balance-january-2015.pdf\" target=\"_blank\" rel=\"noopener\">insufficient evidence\u003c/a>\" to show it was a \"proven and effective treatment for individuals with autism spectrum disorder and/or other developmental disabilities,\" as the \u003cem>Milwaukee Journal-Sentinel \u003c/em>\u003ca href=\"http://archive.jsonline.com/business/company-pushes-brain-balancing-program-for-learning-disabilities-evidence-lacking-b99551698z1-324854621.html\">reported\u003c/a>. The state assigned Brain Balance to the second-lowest ranking on its five-tier system. The only lower ranking is for \"potentially harmful\" treatments.\u003c/p>\n\u003cp>\u003cstrong>Brain Balance defends its approach\u003c/strong>\u003c/p>\n\u003cp>Asked by NPR why Brain Balance hadn't been tested more thoroughly before its nationwide expansion began a decade ago, Melillo says the company was \"faced with a dilemma.\" While he did feel an obligation to validate his approach, he says he knew Brain Balance worked and didn't want to deprive his clients of its benefits while waiting for clinical trials. \"All these 25,000 families that we've helped, are they left suffering for years on end?\"\u003c/p>\n\u003cp>\"What was done to date was commensurate to the resources that we had,\" says Aleem Choudhry, the chairman of Brain Balance and a managing member at Crane Street Capital, which invested in the franchise in 2013.\u003c/p>\n\u003cp>The company says ADHD was the only disorder to be studied thus far because — contrary to the opinion of all the experts contacted by NPR — it is neurologically equivalent to others like autism, dyslexia and OCD. If Brain Balance improves ADHD symptoms, Melillo says, \"then we believe that we're going to get the same results in the other types of issues, because they're really the same problem.\"\u003c/p>\n\u003cp>Melillo also says the company's proprietary records from about 80,000 before-and-after client assessments qualify as corroboration. Melillo disputed the idea that his company's own data may require third-party review. \"Data is data,\" he says. \"There's no bias in the way we collect this.\"\u003c/p>\n\u003cp>A new study of a \u003ca href=\"https://drteicher.wordpress.com/2015/11/20/non-pharmacological-treatment-for-adhd/\" target=\"_blank\" rel=\"noopener\">computerized version of Brain Balance\u003c/a> is underway at a Harvard-affiliated hospital and features a concurrent control group of children.\u003c/p>\n\u003cp>But Melillo says that questions about the research behind Brain Balance ultimately miss a larger, more important point.\u003c/p>\n\u003cp>\"Families are out there struggling and suffering, and they don't really give a crap about the data or the research, to be quite honest,\" he says. \"When they go through it and they see the difference in their child ... that's what matters to them.\"\u003c/p>\n\u003cp>Choudhry, the company's chairman, later clarified that \"we very much do care about the data.\"\u003c/p>\n\u003cp>\u003cstrong>No easy answer\u003c/strong>\u003c/p>\n\u003cp>With both their boys enrolled in Brain Balance, the routine for Stephanie and Natalie's family was frantic.\u003c/p>\n\u003cp>Three times a week, Stephanie would ferry their sons against traffic to and from their sessions. Family dinners became more rushed. Soccer and swimming were abandoned.\u003c/p>\n\u003cp>Lost time is often a hidden cost of any form of treatment.\u003c/p>\n\u003cp>The mothers began observing changes in their older son. They say his previously weak sense of smell suddenly blossomed, first for brownies and then other foods. And he became less obsessed with characters he had repetitively sketched in his notebooks and imbued with rich inner lives. (His parents are torn as to whether this was a positive development.) He also advanced in certain Brain Balance measures, including his primitive reflexes.\u003c/p>\n\u003cp>\"It's not that the needle didn't move on some of those dimensions,\" says Natalie. \"But if you step back at the 10,000- or 100,000-foot view and say, 'Is this kid different in a way that his life is going to be better or altered?' the answer is 'No.' OK, so now he can smell brownies that he couldn't smell before but is his life different?\"\u003c/p>\n\u003cp>She says she and her wife began to feel discouraged, thinking about the \"aura around this program that says your child's going to be different and better-adjusted.\"\u003c/p>\n\u003cp>Eric Rossen of the National Association of School Psychologists isn't surprised by Brain Balance's popularity as an option beyond what schools and insurance will cover.\u003c/p>\n\u003cp>He says many parents are frustrated by mainstream medicine's limits when it comes to complex disorders like autism. And schools are sometimes too strapped for resources to provide students with learning disorders all the help their parents may want.\u003c/p>\n\u003cp>\"Most parents will say they would die for their children,\" Rossen says. \"So to say, 'I want to provide some therapy and pay a few thousand dollars' is quite short of dying for them and it's totally reasonable.\"\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>But he says \"the problem is they are easy prey for certain providers that can make promises that cannot necessarily be kept or are not necessarily backed by scientific data.\"\u003c/p>\n\u003cp>For parents looking to find evidence-based third-party interventions, experts suggest the \u003ca href=\"https://ies.ed.gov/ncee/wwc/\" target=\"_blank\" rel=\"noopener\">What Works Clearinghouse\u003c/a>, which is backed by the Department of Education, or the Substance Abuse and Mental Health Services Administration's \u003ca href=\"https://www.samhsa.gov/nrepp\" target=\"_blank\" rel=\"noopener\">own resource\u003c/a>.\u003c/p>\n\u003cp>Brain Balance's protocol doesn't appear to pose any physical or developmental harms to children. Instead, the program's costs may come in other ways: siphoning away time and money, and prolonging the hope in some parents that their child may one day shed his or her disorder.\u003c/p>\n\u003cp>Dr. Susan Hyman, a professor of pediatrics at the University of Rochester who has studied autism treatments for decades, says many alternative providers do this by offering an unrealistically simple solution.\u003c/p>\n\u003cp>\"If you were to come to a traditional provider who said, 'You know I'm going to have you work really, really, really hard. ... I might have some drugs. Drugs have side effects. And 90 percent of the time, as an adult, he is still going to have autism,' that's a far less attractive message than 'I can help you.' \"\u003c/p>\n\u003cp>\u003cstrong>Beyond Brain Balance\u003c/strong>\u003c/p>\n\u003cp>By the end of their older son's second three-month session at Brain Balance, Stephanie and Natalie had completely soured on it. They stopped believing that vibrating armbands and spinning in swivel chairs would translate to social success.\u003c/p>\n\u003cp>They decided to not continue.\u003c/p>\n\u003cp>Later, in second grade, their older son began to work with a social worker at school who taught him how to have socially acceptable conversation with his peers.\u003c/p>\n\u003cp>And Stephanie and Natalie did something else — the unthinkable.\u003c/p>\n\u003cp>They put their son on a medication called Strattera. Calibrating the proper dosage with tolerable side effects was a drawn-out process, but eventually they reached an equilibrium. Their older son ended up with a new diagnosis that has some overlap with autism but is more consistent with ADHD, which the medication treats.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Today, he seems to be navigating the world more successfully than before.\u003c/p>\n\u003cp>On a Saturday last August, their older son — who once plaintively asked his parents, \"Why aren't I invited to birthday parties?\" — had just wrapped up a party to celebrate turning 10 years old.\u003c/p>\n\u003cp>Natalie and Stephanie had pizzas delivered and rented a truck lined with pleather sofas on one side and video game systems along the other. The children sat in pairs and used their greasy fingers to dispatch their avatars against each other in virtual battle.\u003c/p>\n\u003cp>\"They were yelling my son's name and saying 'Come play with me! Come play with me!' \" recalls Natalie.\u003c/p>\n\u003cp>The birthday boy says he invited almost all of his friends, from school and camp, and all but one showed up, which was more than he could have ever imagined before.\u003c/p>\n\u003cp>\"Because,\" he says before pausing. \"I haven't had friends for a bit. Until I got my medicine. I got some treatment. I got help. Now, I have tons of friends.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>The reporter, Chris Benderev, can be contacted at cbenderev@npr.org.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=%27Cutting+Edge%27+Program+For+Children+With+Autism+And+ADHD+Rests+On+Razor-Thin+Evidence&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/442896/little-evidence-for-brain-balances-alternative-autism-treatment","authors":["byline_futureofyou_442896"],"categories":["futureofyou_1060","futureofyou_1062","futureofyou_1","futureofyou_73"],"tags":["futureofyou_555","futureofyou_673","futureofyou_61","futureofyou_1056"],"collections":["futureofyou_1093","futureofyou_1097"],"featImg":"futureofyou_442899","label":"source_futureofyou_442896"},"futureofyou_441261":{"type":"posts","id":"futureofyou_441261","meta":{"index":"posts_1591205157","site":"futureofyou","id":"441261","score":null,"sort":[1525388451000]},"guestAuthors":[],"slug":"in-monkeys-researchers-find-possible-biological-marker-of-autism","title":"In Monkeys, Researchers Find Possible Biological Marker of Autism","publishDate":1525388451,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp class=\"big-cap-wrap danger-zone\">\u003cspan class=\"big-cap\">R\u003c/span>esearchers have been left empty-handed so far in their quest to uncover some measurable biological signal that could be used to \u003ca href=\"https://www.statnews.com/2017/02/15/brain-scan-autism-infant-diagnose/\">diagnose autism spectrum disorder\u003c/a>, leaving clinicians to identify the condition just based on a child’s behavior.\u003c/p>\n\u003cp class=\"danger-zone\">But on Wednesday, \u003ca href=\"http://stm.sciencemag.org/lookup/doi/10.1126/scitranslmed.aam9100\" target=\"_blank\" rel=\"noopener\">scientists reported\u003c/a> in the journal Science Translational Medicine that a hormone that regulates blood pressure could be one of those signposts.\u003c/p>\n\u003cp class=\"danger-zone\">They found that low concentrations of the molecule — called arginine vasopressin, or AVP — in the cerebrospinal fluid corresponded to autism-like social behavior in male monkeys, while a high AVP concentration signaled the most social animals. And they discovered similar results when looking at AVP concentrations in the cerebrospinal fluid, or CSF, of a small group of boys.\u003c/p>\n\u003cp class=\"\">“It’s really exciting work,” said Dr. Mollie Meffert, a molecular neuroscientist at Johns Hopkins, who was not involved in the study. “One of the most interesting things is the finding that the vasopressin in the CSF correlates with sociality in the macaques and in autism with children.”\u003c/p>\n\u003cp class=\"\">Meffert said if vasopressin concentrations are confirmed to correspond to \u003ca href=\"https://www.statnews.com/2016/03/31/autism-rate/\">autism\u003c/a>, they could perhaps be used to diagnose the condition and as a gauge to measure the effect of treatment candidates. And Karen Parker, the lead author of the study and associate professor of psychiatry and behavioral sciences at Stanford, said that the hormone could become a drug target if future studies show boosting its levels can assuage the social impairments of autism spectrum disorder.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Autism is diagnosed based on social and communication deficits and repetitive behaviors like hand-flapping or obsessions.\u003c/p>\n\u003cp>A biological diagnostic test for autism is so important, researchers say, because the earlier children start therapeutic interventions, the better the results. Without a medical test, children are typically diagnosed \u003ca href=\"https://www.cdc.gov/mmwr/volumes/67/ss/ss6706a1.htm?s_cid=ss6706a1_w\" target=\"_blank\" rel=\"noopener\">around age 4 1/2\u003c/a>, based on their behavior or a lag in their development.\u003c/p>\n\u003cp>Parker emphasized that the study’s findings are preliminary, and that the discovery of low AVP concentrations in boys with autism was based on so few samples that it needs to be replicated in a larger study. Future studies will also explore whether that association holds in adults and if levels of AVP or other hormones are associated with autism in girls and female animals.\u003c/p>\n\u003cp>Parker added that parents should not try to treat their children with vasopressin, which is used to regulate blood pressure and to treat a condition called diabetes insipidus, given that it has not been tested in autism, it’s not clear what the appropriate dose would be, and it can have \u003ca href=\"https://www.emedicinehealth.com/drug-vasopressin/article_em.htm#sideeffects\" target=\"_blank\" rel=\"noopener\">significant side effects.\u003c/a>\u003c/p>\n\u003cp>One challenge in studying the underlying biology of autism spectrum disorder is the lack of reliable rodent models of the condition. But Parker and colleagues have \u003ca href=\"http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0165401\" target=\"_blank\" rel=\"noopener\">in past studies\u003c/a> established that the natural\u003cstrong> \u003c/strong>variation of social functioning in monkeys can serve as a solid stand-in for people.\u003c/p>\n\u003cp>“They have the complex social cognition that we would care about for the control individuals, and if we can identify animals that have a deficit that’s spontaneously occurring — like humans do — that’s the value of the model,” said Parker, who is also an affiliate scientist at the California National Primate Research Center.\u003c/p>\n\u003cp>For the new study, the researchers identified 15 male rhesus macaques that exhibited low sociality, meaning they weren’t interested in playing with or grooming their fellow macaques, along with 15 highly social monkeys. They then ran tests looking for any significant differences in nine biological markers that \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/24462936\" target=\"_blank\" rel=\"noopener\">had been implicated\u003c/a> \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/26483618\" target=\"_blank\" rel=\"noopener\">in past studies\u003c/a> as possibly linked to autism, including the expression of certain genes, the products of certain signaling pathways, and the concentrations of the hormones AVP and oxytocin.\u003c/p>\n\u003cp>Only one stood out as a marker for the differences in social behavior: the concentration of AVP in the monkey’s cerebrospinal fluid, a colorless material that coats the brain and spinal cord. Notably, the levels of AVP in the blood showed no significant divergence in the two groups of monkeys.\u003c/p>\n\u003cp>To confirm their results, the researchers looked at a second group of male monkeys and again homed in on AVP concentration in the cerebrospinal fluid as being correlated to the sociality of the monkey — the lower the AVP, the less they interacted with their fellow macaques.\u003c/p>\n\u003cp>Then it was time to look at people.\u003c/p>\n\u003cp>Because obtaining cerebrospinal fluid is invasive — it requires a lumbar tap — the researchers relied on samples that had been previously collected from boys for other medical reasons, often as part of a chemotherapy treatment. They found that boys with autism spectrum disorder had lower AVP concentrations in their CSF, though with only 14 samples total — seven from control boys and seven from boys with autism spectrum disorder — the researchers could not draw firm conclusions.\u003c/p>\n\u003cp>Parker said that it’s not clear if low AVP concentrations in the cerebrospinal fluid might contribute to the social problems of autism or just be another consequence of the condition. She also added that it would likely just be one biological marker of autism, which has complicated, multifaceted causes.\u003c/p>\n\u003cp>But she said researchers have for several decades viewed vasopressin as an key influencer of social function, particularly in male animals. If AVP does indeed have some role to play in autism spectrum disorder, then its importance in males could help explain in part why \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/28545751\" target=\"_blank\" rel=\"noopener\">three to four times\u003c/a> more males are diagnosed with the condition than \u003ca href=\"https://www.statnews.com/2016/10/25/autism-girls-reveal-secrets/\">females\u003c/a>.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>“When people talk about autism, one of the things that feels a bit neglected is that the prevalence is very male-biased,” Parker said. “So if you’re thinking about disease mechanisms, it would be really interesting to think about the biology that’s informative to either male or female functioning.”\u003c/p>\n\n","blocks":[],"excerpt":null,"status":"publish","parent":0,"modified":1525373470,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":16,"wordCount":994},"headData":{"title":"In Monkeys, Researchers Find Possible Biological Marker of Autism | KQED","description":"Researchers have been left empty-handed so far in their quest to uncover some measurable biological signal that could be used to diagnose autism spectrum disorder, leaving clinicians to identify the condition just based on a child’s behavior. But on Wednesday, scientists reported in the journal Science Translational Medicine that a hormone that regulates blood pressure could be one","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"In Monkeys, Researchers Find Possible Biological Marker of Autism","datePublished":"2018-05-03T23:00:51.000Z","dateModified":"2018-05-03T18:51:10.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"441261 https://ww2.kqed.org/futureofyou/?p=441261","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/05/03/in-monkeys-researchers-find-possible-biological-marker-of-autism/","disqusTitle":"In Monkeys, Researchers Find Possible Biological Marker of Autism","path":"/futureofyou/441261/in-monkeys-researchers-find-possible-biological-marker-of-autism","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp class=\"big-cap-wrap danger-zone\">\u003cspan class=\"big-cap\">R\u003c/span>esearchers have been left empty-handed so far in their quest to uncover some measurable biological signal that could be used to \u003ca href=\"https://www.statnews.com/2017/02/15/brain-scan-autism-infant-diagnose/\">diagnose autism spectrum disorder\u003c/a>, leaving clinicians to identify the condition just based on a child’s behavior.\u003c/p>\n\u003cp class=\"danger-zone\">But on Wednesday, \u003ca href=\"http://stm.sciencemag.org/lookup/doi/10.1126/scitranslmed.aam9100\" target=\"_blank\" rel=\"noopener\">scientists reported\u003c/a> in the journal Science Translational Medicine that a hormone that regulates blood pressure could be one of those signposts.\u003c/p>\n\u003cp class=\"danger-zone\">They found that low concentrations of the molecule — called arginine vasopressin, or AVP — in the cerebrospinal fluid corresponded to autism-like social behavior in male monkeys, while a high AVP concentration signaled the most social animals. And they discovered similar results when looking at AVP concentrations in the cerebrospinal fluid, or CSF, of a small group of boys.\u003c/p>\n\u003cp class=\"\">“It’s really exciting work,” said Dr. Mollie Meffert, a molecular neuroscientist at Johns Hopkins, who was not involved in the study. “One of the most interesting things is the finding that the vasopressin in the CSF correlates with sociality in the macaques and in autism with children.”\u003c/p>\n\u003cp class=\"\">Meffert said if vasopressin concentrations are confirmed to correspond to \u003ca href=\"https://www.statnews.com/2016/03/31/autism-rate/\">autism\u003c/a>, they could perhaps be used to diagnose the condition and as a gauge to measure the effect of treatment candidates. And Karen Parker, the lead author of the study and associate professor of psychiatry and behavioral sciences at Stanford, said that the hormone could become a drug target if future studies show boosting its levels can assuage the social impairments of autism spectrum disorder.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Autism is diagnosed based on social and communication deficits and repetitive behaviors like hand-flapping or obsessions.\u003c/p>\n\u003cp>A biological diagnostic test for autism is so important, researchers say, because the earlier children start therapeutic interventions, the better the results. Without a medical test, children are typically diagnosed \u003ca href=\"https://www.cdc.gov/mmwr/volumes/67/ss/ss6706a1.htm?s_cid=ss6706a1_w\" target=\"_blank\" rel=\"noopener\">around age 4 1/2\u003c/a>, based on their behavior or a lag in their development.\u003c/p>\n\u003cp>Parker emphasized that the study’s findings are preliminary, and that the discovery of low AVP concentrations in boys with autism was based on so few samples that it needs to be replicated in a larger study. Future studies will also explore whether that association holds in adults and if levels of AVP or other hormones are associated with autism in girls and female animals.\u003c/p>\n\u003cp>Parker added that parents should not try to treat their children with vasopressin, which is used to regulate blood pressure and to treat a condition called diabetes insipidus, given that it has not been tested in autism, it’s not clear what the appropriate dose would be, and it can have \u003ca href=\"https://www.emedicinehealth.com/drug-vasopressin/article_em.htm#sideeffects\" target=\"_blank\" rel=\"noopener\">significant side effects.\u003c/a>\u003c/p>\n\u003cp>One challenge in studying the underlying biology of autism spectrum disorder is the lack of reliable rodent models of the condition. But Parker and colleagues have \u003ca href=\"http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0165401\" target=\"_blank\" rel=\"noopener\">in past studies\u003c/a> established that the natural\u003cstrong> \u003c/strong>variation of social functioning in monkeys can serve as a solid stand-in for people.\u003c/p>\n\u003cp>“They have the complex social cognition that we would care about for the control individuals, and if we can identify animals that have a deficit that’s spontaneously occurring — like humans do — that’s the value of the model,” said Parker, who is also an affiliate scientist at the California National Primate Research Center.\u003c/p>\n\u003cp>For the new study, the researchers identified 15 male rhesus macaques that exhibited low sociality, meaning they weren’t interested in playing with or grooming their fellow macaques, along with 15 highly social monkeys. They then ran tests looking for any significant differences in nine biological markers that \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/24462936\" target=\"_blank\" rel=\"noopener\">had been implicated\u003c/a> \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/26483618\" target=\"_blank\" rel=\"noopener\">in past studies\u003c/a> as possibly linked to autism, including the expression of certain genes, the products of certain signaling pathways, and the concentrations of the hormones AVP and oxytocin.\u003c/p>\n\u003cp>Only one stood out as a marker for the differences in social behavior: the concentration of AVP in the monkey’s cerebrospinal fluid, a colorless material that coats the brain and spinal cord. Notably, the levels of AVP in the blood showed no significant divergence in the two groups of monkeys.\u003c/p>\n\u003cp>To confirm their results, the researchers looked at a second group of male monkeys and again homed in on AVP concentration in the cerebrospinal fluid as being correlated to the sociality of the monkey — the lower the AVP, the less they interacted with their fellow macaques.\u003c/p>\n\u003cp>Then it was time to look at people.\u003c/p>\n\u003cp>Because obtaining cerebrospinal fluid is invasive — it requires a lumbar tap — the researchers relied on samples that had been previously collected from boys for other medical reasons, often as part of a chemotherapy treatment. They found that boys with autism spectrum disorder had lower AVP concentrations in their CSF, though with only 14 samples total — seven from control boys and seven from boys with autism spectrum disorder — the researchers could not draw firm conclusions.\u003c/p>\n\u003cp>Parker said that it’s not clear if low AVP concentrations in the cerebrospinal fluid might contribute to the social problems of autism or just be another consequence of the condition. She also added that it would likely just be one biological marker of autism, which has complicated, multifaceted causes.\u003c/p>\n\u003cp>But she said researchers have for several decades viewed vasopressin as an key influencer of social function, particularly in male animals. If AVP does indeed have some role to play in autism spectrum disorder, then its importance in males could help explain in part why \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/28545751\" target=\"_blank\" rel=\"noopener\">three to four times\u003c/a> more males are diagnosed with the condition than \u003ca href=\"https://www.statnews.com/2016/10/25/autism-girls-reveal-secrets/\">females\u003c/a>.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>“When people talk about autism, one of the things that feels a bit neglected is that the prevalence is very male-biased,” Parker said. “So if you’re thinking about disease mechanisms, it would be really interesting to think about the biology that’s informative to either male or female functioning.”\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/441261/in-monkeys-researchers-find-possible-biological-marker-of-autism","authors":["11428"],"categories":["futureofyou_1"],"tags":["futureofyou_555","futureofyou_56","futureofyou_61","futureofyou_294"],"featImg":"futureofyou_441264","label":"futureofyou"},"futureofyou_441113":{"type":"posts","id":"futureofyou_441113","meta":{"index":"posts_1591205157","site":"futureofyou","id":"441113","score":null,"sort":[1525096835000]},"guestAuthors":[],"slug":"autism-is-on-the-rise-cdc-says-heres-what-that-actually-means","title":"Autism Is on the Rise, CDC Says. Here’s What That Actually Means","publishDate":1525096835,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>One in 59 children in the U.S. have autism spectrum disorder, based on a new estimate released Thursday by the Centers for Disease Control and Prevention.\u003c/p>\n\u003cp>This finding indicates the prevalence of autism is slightly higher than previously thought, but does it mean autism is becoming more common? Here is what you need to know.[contextly_sidebar id=\"Sevxx0pxynIJeAlOQQl1WQbPkkyNrlRB\"]\u003c/p>\n\u003cp>\u003cb>Where the new numbers came from:\u003c/b> Since the turn of the century, the CDC and partner hospitals have measured the prevalence and evolution of autism spectrum disorder by using a massive group of 8-year-olds.\u003c/p>\n\u003cp>Known as the \u003ca href=\"https://www.cdc.gov/ncbddd/autism/addm.html\" target=\"_blank\" rel=\"noopener\">Autism and Developmental Disabilities Monitoring (ADDM) Network\u003c/a>, this survey ranges in size — depending on the year — from 180,000 to 400,000 children. It is spread across 11 communities in Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee and Wisconsin.\u003c/p>\n\u003cp>Every two years, the CDC compiles this health data into a report, but due to a lag, Thursday’s findings technically reflect how many autism cases existed in 2014.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003cb>The new rate, in context:\u003c/b> The latest figure from the network represents a small — less than a quarter of a percentage point — increase compared to the autism rate released in 2016 (one in 68). CDC officials partially attribute this rise to improved surveillance and diagnosis in minority communities.\u003c/p>\n\u003cp>\u003ca href=\"http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0011551\">Socioeconomics factors into whether or not\u003c/a> a child will receive access to autism screening, and prior research has found white and Asian children \u003ca href=\"https://ajph.aphapublications.org/doi/10.2105/AJPH.2007.131243\">are more likely to be diagnosed\u003c/a> than black and Hispanic kids. In 2012, the ADDM survey detected 20 percent more cases of autism in white versus black children. Compared to Latino children, the gap was even larger, at 50 percent.\u003c/p>\n\u003cp>\u003ciframe width=\"640\" height=\"360\" src=\"https://www.youtube.com/embed/aS0mh0kUlzo?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture\" allowfullscreen>\u003c/iframe>\u003c/p>\n\u003cp>“Autism prevalence among black and Hispanic children is approaching that of white children,” Stuart Shapira, associate director for science at CDC’s National Center on Birth Defects and Developmental Disabilities, said in a \u003ca href=\"https://www.cdc.gov/media/releases/2018/p0426-autism-prevalence.html\">statement\u003c/a>. “The higher number of black and Hispanic children now being identified with autism could be due to more effective outreach in minority communities and increased efforts to have all children screened for autism so they can get the services they need.”\u003c/p>\n\u003cp>But if it’s the case that the rate grew only because of better diagnosis, that would mean that autism spectrum disorder isn’t becoming more common among American children. Doctors are just better at spotting it.\u003c/p>\n\u003cp>\u003cb>Why it matters:\u003c/b> There is huge room for improvement when it comes to diagnosing autism. Based on the latest survey, doctors had noted developmental concerns early on with 85 percent of the children with autism, typically by age 3. But physicians only referred them for specialized evaluation 42 percent of the time. The autism rate also varied dramatically by region, with New Jersey reporting a prevalence that is twice what is found in Arkansas.\u003c/p>\n\u003cp>Until screening becomes level across the nation, it will be difficult to fully determine the degree to which regional, environmental and socioeconomic factors contribute to autism.[contextly_sidebar id=\"geBXqLoqg0oZNnzzsN71l0qnyTuBs8AV\"]\u003c/p>\n\u003cp>Meanwhile, any increase in the autism rate is met with a strong public scrutiny, as parents of children with the conditions continue to look, \u003ca href=\"https://spectrumnews.org/features/deep-dive/the-seekers-parents-who-find-fringe-therapies-for-autism/\">sometimes in alternative places\u003c/a>, for a cause and cure. This year also marks two decades since The Lancet published a now retracted study by Dr. Andrew Wakefield that falsified a link between measles, mumps and rubella (MMR) vaccine and autism. Since its publication, \u003ca href=\"https://www.cdc.gov/vaccinesafety/pdf/cdcstudiesonvaccinesandautism.pdf\">dozens\u003c/a> of \u003ca href=\"http://www.nejm.org/doi/full/10.1056/NEJMoa021134\">studies\u003c/a> have looked into any possible link between the measles vaccine and autism, and the evidence overwhelming shows no link.\u003c/p>\n\u003cp>After Wakefield’s study, the autism advocacy and medical communities endured a strained relationship, said Dr. Susan Hyman, division chief of developmental and behavioral pediatrics at the University of Rochester Medical Center. Just last autumn, a study found children whose older siblings have autism are about 14 percent \u003ca href=\"http://www.nejm.org/doi/full/10.1056/NEJMc1708223\">less likely\u003c/a> to be vaccinated than siblings of those without the disorder.\u003c/p>\n\u003cp>“Parents are still afraid because when you put that scary idea out there, it’s hard to put it back in,” said Alison Singer, president of the Autism Science Foundation (ASF). “So, there is still a legacy 20 years later from the Wakefield paper, and that legacy is disease and death.”\u003c/p>\n\u003cp>\u003ciframe width=\"640\" height=\"360\" src=\"https://www.youtube.com/embed/G3jiqymFDGg?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture\" allowfullscreen>\u003c/iframe>\u003c/p>\n\u003cp>Since then, the anti-vaccination movement has survived both in the United States and Europe. In the United Kingdom, MMR immunization rates \u003ca href=\"http://researchbriefings.files.parliament.uk/documents/SN02581/SN02581.pdf\">dropped\u003c/a> about 4 percent after the Wakefield study’s publication. A measles outbreak at Disneyland in 2014 \u003ca href=\"https://www.cdc.gov/mmwr/volumes/66/wr/mm6627a1.htm\">was attributed directly\u003c/a> to misinformation about vaccines and autism.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>“We tell parents all the time: when you withhold vaccines from your child, you are doing absolutely nothing to reduce the likelihood that they will be diagnosed with autism,” Singer said. “But you are absolutely increasing the likelihood that they will contract a disease from which they could potentially die.”\u003c/p>\n\n","blocks":[],"excerpt":"The prevalence of autism is slightly higher -- one in 59 children -- than previously thought. But does this finding mean autism has become more common? ","status":"publish","parent":0,"modified":1525111349,"stats":{"hasAudio":false,"hasVideo":true,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":20,"wordCount":820},"headData":{"title":"Autism Is on the Rise, CDC Says. Here’s What That Actually Means | KQED","description":"The prevalence of autism is slightly higher -- one in 59 children -- than previously thought. But does this finding mean autism has become more common? ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Autism Is on the Rise, CDC Says. Here’s What That Actually Means","datePublished":"2018-04-30T14:00:35.000Z","dateModified":"2018-04-30T18:02:29.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"441113 https://ww2.kqed.org/futureofyou/?p=441113","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/04/30/autism-is-on-the-rise-cdc-says-heres-what-that-actually-means/","disqusTitle":"Autism Is on the Rise, CDC Says. Here’s What That Actually Means","source":"Health","nprByline":"Nsikan Akpan\u003cbr />Hannah Grabenstein\u003cbr />PBS Health","path":"/futureofyou/441113/autism-is-on-the-rise-cdc-says-heres-what-that-actually-means","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>One in 59 children in the U.S. have autism spectrum disorder, based on a new estimate released Thursday by the Centers for Disease Control and Prevention.\u003c/p>\n\u003cp>This finding indicates the prevalence of autism is slightly higher than previously thought, but does it mean autism is becoming more common? Here is what you need to know.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>\u003cb>Where the new numbers came from:\u003c/b> Since the turn of the century, the CDC and partner hospitals have measured the prevalence and evolution of autism spectrum disorder by using a massive group of 8-year-olds.\u003c/p>\n\u003cp>Known as the \u003ca href=\"https://www.cdc.gov/ncbddd/autism/addm.html\" target=\"_blank\" rel=\"noopener\">Autism and Developmental Disabilities Monitoring (ADDM) Network\u003c/a>, this survey ranges in size — depending on the year — from 180,000 to 400,000 children. It is spread across 11 communities in Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee and Wisconsin.\u003c/p>\n\u003cp>Every two years, the CDC compiles this health data into a report, but due to a lag, Thursday’s findings technically reflect how many autism cases existed in 2014.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cb>The new rate, in context:\u003c/b> The latest figure from the network represents a small — less than a quarter of a percentage point — increase compared to the autism rate released in 2016 (one in 68). CDC officials partially attribute this rise to improved surveillance and diagnosis in minority communities.\u003c/p>\n\u003cp>\u003ca href=\"http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0011551\">Socioeconomics factors into whether or not\u003c/a> a child will receive access to autism screening, and prior research has found white and Asian children \u003ca href=\"https://ajph.aphapublications.org/doi/10.2105/AJPH.2007.131243\">are more likely to be diagnosed\u003c/a> than black and Hispanic kids. In 2012, the ADDM survey detected 20 percent more cases of autism in white versus black children. Compared to Latino children, the gap was even larger, at 50 percent.\u003c/p>\n\u003cp>\u003ciframe width=\"640\" height=\"360\" src=\"https://www.youtube.com/embed/aS0mh0kUlzo?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture\" allowfullscreen>\u003c/iframe>\u003c/p>\n\u003cp>“Autism prevalence among black and Hispanic children is approaching that of white children,” Stuart Shapira, associate director for science at CDC’s National Center on Birth Defects and Developmental Disabilities, said in a \u003ca href=\"https://www.cdc.gov/media/releases/2018/p0426-autism-prevalence.html\">statement\u003c/a>. “The higher number of black and Hispanic children now being identified with autism could be due to more effective outreach in minority communities and increased efforts to have all children screened for autism so they can get the services they need.”\u003c/p>\n\u003cp>But if it’s the case that the rate grew only because of better diagnosis, that would mean that autism spectrum disorder isn’t becoming more common among American children. Doctors are just better at spotting it.\u003c/p>\n\u003cp>\u003cb>Why it matters:\u003c/b> There is huge room for improvement when it comes to diagnosing autism. Based on the latest survey, doctors had noted developmental concerns early on with 85 percent of the children with autism, typically by age 3. But physicians only referred them for specialized evaluation 42 percent of the time. The autism rate also varied dramatically by region, with New Jersey reporting a prevalence that is twice what is found in Arkansas.\u003c/p>\n\u003cp>Until screening becomes level across the nation, it will be difficult to fully determine the degree to which regional, environmental and socioeconomic factors contribute to autism.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Meanwhile, any increase in the autism rate is met with a strong public scrutiny, as parents of children with the conditions continue to look, \u003ca href=\"https://spectrumnews.org/features/deep-dive/the-seekers-parents-who-find-fringe-therapies-for-autism/\">sometimes in alternative places\u003c/a>, for a cause and cure. This year also marks two decades since The Lancet published a now retracted study by Dr. Andrew Wakefield that falsified a link between measles, mumps and rubella (MMR) vaccine and autism. Since its publication, \u003ca href=\"https://www.cdc.gov/vaccinesafety/pdf/cdcstudiesonvaccinesandautism.pdf\">dozens\u003c/a> of \u003ca href=\"http://www.nejm.org/doi/full/10.1056/NEJMoa021134\">studies\u003c/a> have looked into any possible link between the measles vaccine and autism, and the evidence overwhelming shows no link.\u003c/p>\n\u003cp>After Wakefield’s study, the autism advocacy and medical communities endured a strained relationship, said Dr. Susan Hyman, division chief of developmental and behavioral pediatrics at the University of Rochester Medical Center. Just last autumn, a study found children whose older siblings have autism are about 14 percent \u003ca href=\"http://www.nejm.org/doi/full/10.1056/NEJMc1708223\">less likely\u003c/a> to be vaccinated than siblings of those without the disorder.\u003c/p>\n\u003cp>“Parents are still afraid because when you put that scary idea out there, it’s hard to put it back in,” said Alison Singer, president of the Autism Science Foundation (ASF). “So, there is still a legacy 20 years later from the Wakefield paper, and that legacy is disease and death.”\u003c/p>\n\u003cp>\u003ciframe width=\"640\" height=\"360\" src=\"https://www.youtube.com/embed/G3jiqymFDGg?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture\" allowfullscreen>\u003c/iframe>\u003c/p>\n\u003cp>Since then, the anti-vaccination movement has survived both in the United States and Europe. In the United Kingdom, MMR immunization rates \u003ca href=\"http://researchbriefings.files.parliament.uk/documents/SN02581/SN02581.pdf\">dropped\u003c/a> about 4 percent after the Wakefield study’s publication. A measles outbreak at Disneyland in 2014 \u003ca href=\"https://www.cdc.gov/mmwr/volumes/66/wr/mm6627a1.htm\">was attributed directly\u003c/a> to misinformation about vaccines and autism.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>“We tell parents all the time: when you withhold vaccines from your child, you are doing absolutely nothing to reduce the likelihood that they will be diagnosed with autism,” Singer said. “But you are absolutely increasing the likelihood that they will contract a disease from which they could potentially die.”\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/441113/autism-is-on-the-rise-cdc-says-heres-what-that-actually-means","authors":["byline_futureofyou_441113"],"categories":["futureofyou_1","futureofyou_73"],"tags":["futureofyou_555","futureofyou_854","futureofyou_491","futureofyou_141","futureofyou_198"],"featImg":"futureofyou_441114","label":"source_futureofyou_441113"},"futureofyou_440335":{"type":"posts","id":"futureofyou_440335","meta":{"index":"posts_1591205157","site":"futureofyou","id":"440335","score":null,"sort":[1521569436000]},"guestAuthors":[],"slug":"black-and-latino-children-are-often-overlooked-when-it-comes-to-autism","title":"Black And Latino Children Are Often Overlooked When It Comes To Autism","publishDate":1521569436,"format":"standard","headTitle":"Future of You | KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>Sherry Alvarez says she knew there was \u003ca href=\"https://www.kqed.org/futureofyou/357617/sesame-street-to-introduce-muppet-with-autism\" target=\"_blank\" rel=\"noopener\">something different\u003c/a> about her son since he was about 9 months old. Back then Sherry says his pediatrician told her there was nothing to worry about, \" 'Boys are a little slower than girls, so let's just wait until his second birthday.' \" We aren't using Sherry's son's name to protect his privacy.\u003c/p>\n\u003cp>By her son's second birthday, Sherry says she was getting desperate. She didn't know why he wasn't talking yet or showing affection like other kids. At 2 1/2, he was referred to Children's Hospital Los Angeles.[contextly_sidebar id=\"HF94QtAhJ0QaonfGcwoc1BDmUjMCZqvd\"]\u003c/p>\n\u003cp>There, after four hours of tests, Sherry says the doctor handed her a 20-page report explaining his autism spectrum disorder diagnosis, among others. She says she was paralyzed by emotion.\u003c/p>\n\u003cp>ASD is a disease that affects people of all races and ethnicities, but \u003ca href=\"http://www.jaacap.com/article/S0890-8567(09)60739-5/abstract\" target=\"_blank\" rel=\"noopener\">research \u003c/a>shows that African-American and Latino children with autism are diagnosed at older ages than white children, giving them less of an opportunity for proper intervention and treatment.\u003c/p>\n\u003cp>This is especially true of minimally verbal kids like Sherry's son and there are many possible reasons for a late diagnosis. Some families face healthcare access issues and prohibitive costs for treatment, and some families just don't know how important it is to \u003ca href=\"https://www.kqed.org/futureofyou/436442/cdc-app-tells-parents-when-to-be-concerned-about-child-development\" target=\"_blank\" rel=\"noopener\">get diagnosed to move on\u003c/a> to the treatment phase. The dialog between doctors and minority families during the diagnosis process is critical.[contextly_sidebar id=\"i6RhCi4DH3w2V0Rp0zM5OR4cXRLu6ZFc\"]\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/29100475\" target=\"_blank\" rel=\"noopener\">A recent study\u003c/a> from Georgia State University found that African-American parents reported fewer concerns about behaviors like delayed speech and repetitive behaviors, even though their children showed a greater severity with these symptoms, overall. But, of course, it isn't all up to parents.\u003c/p>\n\u003cp>\"There are very likely parent aspects of this and very likely clinician aspects of this,\" says Meghan Rose Donohue, a lead researcher on the study. Perhaps families, like Sherry's, don't have the information necessary to really push physicians, but it is also possible that doctors don't take these cases seriously enough from the beginning.\u003c/p>\n\u003cp>\u003cstrong>Misdiagnosis\u003c/strong>\u003cbr>\nFamilies and doctors, alike, can mistake ASD for simple bad behavior, especially in boys, as research has shown over the past couple of decades. \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/11575603\" target=\"_blank\" rel=\"noopener\">A 2001 study\u003c/a> at McGill University in Montreal found that doctors were more hesitant to diagnose ASD in minority families.[contextly_sidebar id=\"z5QvKJ1QNa5Nn1EGXEj633LNkljonhOJ\"]\u003c/p>\n\u003cp>In 2007, \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/17160456\" target=\"_blank\" rel=\"noopener\">a study\u003c/a> by a team at the Center for Autism and Developmental Disabilities Research and Epidemiology, University of Pennsylvania, found that African-American children were 5.1 times more likely to be misdiagnosed with conduct disorders before being diagnosed with ASD.\u003c/p>\n\u003cp>When Sherry was growing up, she had a cousin who the family thought of as \"different,\" she says. \"He was basically hidden. We didn't talk about it as a community.\" He had autism. \"We have to retrain ourselves. It's not OK to hide our kids.\"\u003c/p>\n\u003cp>\u003ca href=\"http://www.dds.ca.gov/RC/\" target=\"_blank\" rel=\"noopener\">Regional Centers\u003c/a> in Los Angeles, which offer services to the developmentally disabled, are now starting to look at the \u003ca href=\"https://www.kqed.org/futureofyou/245794/researchers-hunt-for-the-microbiome-of-autism\" target=\"_blank\" rel=\"noopener\">diagnosis disparity problem\u003c/a>. Westside Regional Center in Culver City just received a grant from the state to look at how autism diagnosis disparities manifest within their intake and treatment programs.[contextly_sidebar id=\"nMqm3DUyCpzzodOPiyxyxYVgb9M171ki\"]\u003c/p>\n\u003cp>\"We've implemented a series of trainings with intake counselors on cultural awareness and sensitivity, and we're starting to have a lot of conversations about biases,\" says Tom Kelly, Westside's chief psychologist.\u003c/p>\n\u003cp>One of the apparent biases among intake counselors at the center stems from the difference in the documentation that arrives with each new child. African-American families tend to arrive at the center with lots of documentation detailing behavior issues from their child's school or social services. With all those official papers sitting in front of them, it's much easier for a counselor to think \"behavior disease\" rather than \"autism,\" says Kelly.\u003c/p>\n\u003cp>\u003cstrong>Economic Disparities\u003c/strong>\u003cbr>\nAnd that disparity exists in dollars spent, as well. As reported in \u003ca href=\"https://issuu.com/publiccounsel/docs/assuring_equitable_funding_of_servi?e=29495352/49041713\" target=\"_blank\" rel=\"noopener\">a 2017 survey\u003c/a>, South Central Regional Center spends $8,000 less per client than the Westside location and the racial disparity \u003ca href=\"http://www.calhealthreport.org/2016/12/12/marked-racial-disparities-in-money-spent-to-help-disabled/\" target=\"_blank\" rel=\"noopener\">persists statewide\u003c/a>.\u003c/p>\n\u003cp>But there are more resources for minority families today than compared to when Sherry's son was young. The Autism Society of Los Angeles runs a hotline to help parents navigate the diagnosis and healthcare landscape and Children's Hospital Los Angeles now employs liaisons to help families connect with the right resources. But, the spending gap persists.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Today, Sherry says her now 15-year-old son is happy. He attends Hamilton High School and communicates almost solely through a typing device. \"This is the time in his life where those early treatments could have made a difference,\" she laments.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Black+And+Latino+Children+Are+Often+Overlooked+When+It+Comes+To+Autism&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n","blocks":[],"excerpt":"Research suggests that minority youth are poorly diagnosed because of healthcare bias and lack of access.","status":"publish","parent":0,"modified":1521569436,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":18,"wordCount":799},"headData":{"title":"Black And Latino Children Are Often Overlooked When It Comes To Autism | KQED","description":"Research suggests that minority youth are poorly diagnosed because of healthcare bias and lack of access.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Black And Latino Children Are Often Overlooked When It Comes To Autism","datePublished":"2018-03-20T18:10:36.000Z","dateModified":"2018-03-20T18:10:36.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"440335 https://ww2.kqed.org/futureofyou/?p=440335","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/03/20/black-and-latino-children-are-often-overlooked-when-it-comes-to-autism/","disqusTitle":"Black And Latino Children Are Often Overlooked When It Comes To Autism","source":"KQED Future of You","nprByline":"Casey Rentz\u003cbr />NPR Shots","nprImageAgency":"Shannon Wright for NPR","nprStoryId":"587249339","nprApiLink":"http://api.npr.org/query?id=587249339&apiKey=MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004","nprHtmlLink":"https://www.npr.org/sections/health-shots/2018/03/19/587249339/black-and-latino-children-are-often-overlooked-when-it-comes-to-autism?ft=nprml&f=587249339","nprRetrievedStory":"1","nprPubDate":"Mon, 19 Mar 2018 16:42:00 -0400","nprStoryDate":"Mon, 19 Mar 2018 15:24:00 -0400","nprLastModifiedDate":"Mon, 19 Mar 2018 16:42:27 -0400","path":"/futureofyou/440335/black-and-latino-children-are-often-overlooked-when-it-comes-to-autism","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Sherry Alvarez says she knew there was \u003ca href=\"https://www.kqed.org/futureofyou/357617/sesame-street-to-introduce-muppet-with-autism\" target=\"_blank\" rel=\"noopener\">something different\u003c/a> about her son since he was about 9 months old. Back then Sherry says his pediatrician told her there was nothing to worry about, \" 'Boys are a little slower than girls, so let's just wait until his second birthday.' \" We aren't using Sherry's son's name to protect his privacy.\u003c/p>\n\u003cp>By her son's second birthday, Sherry says she was getting desperate. She didn't know why he wasn't talking yet or showing affection like other kids. At 2 1/2, he was referred to Children's Hospital Los Angeles.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>There, after four hours of tests, Sherry says the doctor handed her a 20-page report explaining his autism spectrum disorder diagnosis, among others. She says she was paralyzed by emotion.\u003c/p>\n\u003cp>ASD is a disease that affects people of all races and ethnicities, but \u003ca href=\"http://www.jaacap.com/article/S0890-8567(09)60739-5/abstract\" target=\"_blank\" rel=\"noopener\">research \u003c/a>shows that African-American and Latino children with autism are diagnosed at older ages than white children, giving them less of an opportunity for proper intervention and treatment.\u003c/p>\n\u003cp>This is especially true of minimally verbal kids like Sherry's son and there are many possible reasons for a late diagnosis. Some families face healthcare access issues and prohibitive costs for treatment, and some families just don't know how important it is to \u003ca href=\"https://www.kqed.org/futureofyou/436442/cdc-app-tells-parents-when-to-be-concerned-about-child-development\" target=\"_blank\" rel=\"noopener\">get diagnosed to move on\u003c/a> to the treatment phase. The dialog between doctors and minority families during the diagnosis process is critical.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/29100475\" target=\"_blank\" rel=\"noopener\">A recent study\u003c/a> from Georgia State University found that African-American parents reported fewer concerns about behaviors like delayed speech and repetitive behaviors, even though their children showed a greater severity with these symptoms, overall. But, of course, it isn't all up to parents.\u003c/p>\n\u003cp>\"There are very likely parent aspects of this and very likely clinician aspects of this,\" says Meghan Rose Donohue, a lead researcher on the study. Perhaps families, like Sherry's, don't have the information necessary to really push physicians, but it is also possible that doctors don't take these cases seriously enough from the beginning.\u003c/p>\n\u003cp>\u003cstrong>Misdiagnosis\u003c/strong>\u003cbr>\nFamilies and doctors, alike, can mistake ASD for simple bad behavior, especially in boys, as research has shown over the past couple of decades. \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/11575603\" target=\"_blank\" rel=\"noopener\">A 2001 study\u003c/a> at McGill University in Montreal found that doctors were more hesitant to diagnose ASD in minority families.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>In 2007, \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/17160456\" target=\"_blank\" rel=\"noopener\">a study\u003c/a> by a team at the Center for Autism and Developmental Disabilities Research and Epidemiology, University of Pennsylvania, found that African-American children were 5.1 times more likely to be misdiagnosed with conduct disorders before being diagnosed with ASD.\u003c/p>\n\u003cp>When Sherry was growing up, she had a cousin who the family thought of as \"different,\" she says. \"He was basically hidden. We didn't talk about it as a community.\" He had autism. \"We have to retrain ourselves. It's not OK to hide our kids.\"\u003c/p>\n\u003cp>\u003ca href=\"http://www.dds.ca.gov/RC/\" target=\"_blank\" rel=\"noopener\">Regional Centers\u003c/a> in Los Angeles, which offer services to the developmentally disabled, are now starting to look at the \u003ca href=\"https://www.kqed.org/futureofyou/245794/researchers-hunt-for-the-microbiome-of-autism\" target=\"_blank\" rel=\"noopener\">diagnosis disparity problem\u003c/a>. Westside Regional Center in Culver City just received a grant from the state to look at how autism diagnosis disparities manifest within their intake and treatment programs.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>\"We've implemented a series of trainings with intake counselors on cultural awareness and sensitivity, and we're starting to have a lot of conversations about biases,\" says Tom Kelly, Westside's chief psychologist.\u003c/p>\n\u003cp>One of the apparent biases among intake counselors at the center stems from the difference in the documentation that arrives with each new child. African-American families tend to arrive at the center with lots of documentation detailing behavior issues from their child's school or social services. With all those official papers sitting in front of them, it's much easier for a counselor to think \"behavior disease\" rather than \"autism,\" says Kelly.\u003c/p>\n\u003cp>\u003cstrong>Economic Disparities\u003c/strong>\u003cbr>\nAnd that disparity exists in dollars spent, as well. As reported in \u003ca href=\"https://issuu.com/publiccounsel/docs/assuring_equitable_funding_of_servi?e=29495352/49041713\" target=\"_blank\" rel=\"noopener\">a 2017 survey\u003c/a>, South Central Regional Center spends $8,000 less per client than the Westside location and the racial disparity \u003ca href=\"http://www.calhealthreport.org/2016/12/12/marked-racial-disparities-in-money-spent-to-help-disabled/\" target=\"_blank\" rel=\"noopener\">persists statewide\u003c/a>.\u003c/p>\n\u003cp>But there are more resources for minority families today than compared to when Sherry's son was young. The Autism Society of Los Angeles runs a hotline to help parents navigate the diagnosis and healthcare landscape and Children's Hospital Los Angeles now employs liaisons to help families connect with the right resources. But, the spending gap persists.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Today, Sherry says her now 15-year-old son is happy. He attends Hamilton High School and communicates almost solely through a typing device. \"This is the time in his life where those early treatments could have made a difference,\" she laments.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Black+And+Latino+Children+Are+Often+Overlooked+When+It+Comes+To+Autism&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/440335/black-and-latino-children-are-often-overlooked-when-it-comes-to-autism","authors":["byline_futureofyou_440335"],"programs":["futureofyou_54"],"categories":["futureofyou_1060","futureofyou_1"],"tags":["futureofyou_555","futureofyou_537","futureofyou_141","futureofyou_756","futureofyou_198","futureofyou_1434"],"collections":["futureofyou_1093"],"featImg":"futureofyou_440336","label":"source_futureofyou_440335"},"futureofyou_436442":{"type":"posts","id":"futureofyou_436442","meta":{"index":"posts_1591205157","site":"futureofyou","id":"436442","score":null,"sort":[1509642050000]},"guestAuthors":[],"slug":"cdc-app-tells-parents-when-to-be-concerned-about-child-development","title":"CDC App Tells Parents When to Be Concerned About Child's Development","publishDate":1509642050,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>You’re a new parent. Your 1-year-old enjoys playtime, responds to her own name, and makes sounds that sound almost like words.\u003c/p>\n\u003cp>But there's one thing that's disturbing you. After you hold her up so that her feet touch the ground, she can’t support her own weight. She bends this way and that, unable to prop herself up.\u003c/p>\n\u003cp>Is this a problem that requires a checkup by your pediatrician? Or is she just developing a little slower than other toddlers?\u003c/p>\n\u003caside class=\"alignright\">When there's a delay in developmental milestones, do you need to call the doctor or not? The CDC has an app you can use.\u003c/aside>\n\u003cp>Well, there’s an app for that. The CDC last week released a free tool\u003ca href=\"https://www.cdc.gov/ncbddd/actearly/milestones-app.html\" target=\"_blank\" rel=\"noopener\"> \u003c/a>for parents who want to monitor their children’s developmental accomplishments — and learn more about where they may be falling behind.\u003c/p>\n\u003cp>The app, called \u003ca href=\"https://www.cdc.gov/ncbddd/actearly/milestones-app.html\" target=\"_blank\" rel=\"noopener\">Milestone Tracker,\u003c/a> is available for\u003ca href=\"https://itunes.apple.com/us/app/cdcs-milestone-tracker/id1232718688?mt=8\" target=\"_blank\" rel=\"noopener\"> iPhone\u003c/a> and \u003ca href=\"https://play.google.com/store/apps/details?id=gov.cdc.ncbddd.actearly.milestones\" target=\"_blank\" rel=\"noopener\">Android. \u003c/a>It allows parents to create a personalized checklist for the emotional and physical developmental milestones of children aged 2 months to 5 years. Parents can assess their progress by looking at \u003ca href=\"https://www.cdc.gov/ncbddd/actearly/milestones/milestones-in-action.html\" target=\"_blank\" rel=\"noopener\">photos and videos\u003c/a>.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The app is an outgrowth of a CDC program called “\u003ca href=\"https://www.cdc.gov/ncbddd/actearly/index.html\" target=\"_blank\" rel=\"noopener\">Learn the Signs. Act Early\u003c/a>.” Signs of what? The CDC’s press release mentions developmental delays and disabilities, including those caused by autism spectrum disorder, which is \u003ca href=\"https://www.cdc.gov/ncbddd/autism/screening.html\" target=\"_blank\" rel=\"noopener\">challenging to diagnose\u003c/a> before the age of 2.\u003c/p>\n\u003cp>“Skills like taking a first step, saying those first words, and waving ‘bye-bye’ are developmental milestones all parents anticipate and celebrate,” said CDC Director Dr. Brenda Fitzgerald. “This CDC Milestone Tracker app gives parents tips to help their child learn and grow, a way to track developmental milestones, recognize delays, and the ability to share this information with their healthcare provider.” [contextly_sidebar id=\"QuoFnaGoFF16hYcZD1iccIxH5LTyS1hF\"]\u003c/p>\n\u003cp>As a parent fills out a record-keeping scorecard, the app will recommend whether to see a pediatrician for a developmental screening. The answers to some questions are a soothing reminder that children develop at different rates, so you can relax. At other times, the app may instruct a parent to call their pediatrician. (The American Association of Pediatrics also has an \u003ca href=\"https://motordelay.aap.org/\"> interactive activity tracker\u003c/a> that recommends when to consult a doctor.)\u003c/p>\n\u003cp>Autism isn’t the only condition that can delay cognitive, physical and emotional development. Young children \u003ca href=\"https://www.cdc.gov/ncbddd/developmentaldisabilities/specificconditions.html\" target=\"_blank\" rel=\"noopener\"> may have\u003c/a> undiagnosed hearing or vision loss, muscular dystrophy, Tourette’s syndrome, cerebral palsy or ADHD.\u003c/p>\n\u003caside class=\"aligncenter\">\u003ca href=\"https://www.cdc.gov/ncbddd/actearly/milestones/milestones-in-action.html\" target=\"_blank\" rel=\"noopener\">Videos: Developmental milestones at different ages\u003c/a>\u003c/aside>\n\u003cp>The app offers tips on activities that help a child grow, tailored to different ages, pertaining to things like discipline, reading skills, communication, education and physical affection.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Parents can also keep track of their kids' doctor appointments and sign up for reminders about booking a developmental screening.\u003c/p>\n\n","blocks":[],"excerpt":"The CDC's new app gives parents a way to track a child's developmental milestones and know when something's wrong. ","status":"publish","parent":0,"modified":1509643636,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":13,"wordCount":481},"headData":{"title":"CDC App Tells Parents When to Be Concerned About Child's Development | KQED","description":"The CDC's new app gives parents a way to track a child's developmental milestones and know when something's wrong. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"CDC App Tells Parents When to Be Concerned About Child's Development","datePublished":"2017-11-02T17:00:50.000Z","dateModified":"2017-11-02T17:27:16.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"436442 https://ww2.kqed.org/futureofyou/?p=436442","disqusUrl":"https://ww2.kqed.org/futureofyou/2017/11/02/cdc-app-tells-parents-when-to-be-concerned-about-child-development/","disqusTitle":"CDC App Tells Parents When to Be Concerned About Child's Development","path":"/futureofyou/436442/cdc-app-tells-parents-when-to-be-concerned-about-child-development","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>You’re a new parent. Your 1-year-old enjoys playtime, responds to her own name, and makes sounds that sound almost like words.\u003c/p>\n\u003cp>But there's one thing that's disturbing you. After you hold her up so that her feet touch the ground, she can’t support her own weight. She bends this way and that, unable to prop herself up.\u003c/p>\n\u003cp>Is this a problem that requires a checkup by your pediatrician? Or is she just developing a little slower than other toddlers?\u003c/p>\n\u003caside class=\"alignright\">When there's a delay in developmental milestones, do you need to call the doctor or not? The CDC has an app you can use.\u003c/aside>\n\u003cp>Well, there’s an app for that. The CDC last week released a free tool\u003ca href=\"https://www.cdc.gov/ncbddd/actearly/milestones-app.html\" target=\"_blank\" rel=\"noopener\"> \u003c/a>for parents who want to monitor their children’s developmental accomplishments — and learn more about where they may be falling behind.\u003c/p>\n\u003cp>The app, called \u003ca href=\"https://www.cdc.gov/ncbddd/actearly/milestones-app.html\" target=\"_blank\" rel=\"noopener\">Milestone Tracker,\u003c/a> is available for\u003ca href=\"https://itunes.apple.com/us/app/cdcs-milestone-tracker/id1232718688?mt=8\" target=\"_blank\" rel=\"noopener\"> iPhone\u003c/a> and \u003ca href=\"https://play.google.com/store/apps/details?id=gov.cdc.ncbddd.actearly.milestones\" target=\"_blank\" rel=\"noopener\">Android. \u003c/a>It allows parents to create a personalized checklist for the emotional and physical developmental milestones of children aged 2 months to 5 years. Parents can assess their progress by looking at \u003ca href=\"https://www.cdc.gov/ncbddd/actearly/milestones/milestones-in-action.html\" target=\"_blank\" rel=\"noopener\">photos and videos\u003c/a>.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The app is an outgrowth of a CDC program called “\u003ca href=\"https://www.cdc.gov/ncbddd/actearly/index.html\" target=\"_blank\" rel=\"noopener\">Learn the Signs. Act Early\u003c/a>.” Signs of what? The CDC’s press release mentions developmental delays and disabilities, including those caused by autism spectrum disorder, which is \u003ca href=\"https://www.cdc.gov/ncbddd/autism/screening.html\" target=\"_blank\" rel=\"noopener\">challenging to diagnose\u003c/a> before the age of 2.\u003c/p>\n\u003cp>“Skills like taking a first step, saying those first words, and waving ‘bye-bye’ are developmental milestones all parents anticipate and celebrate,” said CDC Director Dr. Brenda Fitzgerald. “This CDC Milestone Tracker app gives parents tips to help their child learn and grow, a way to track developmental milestones, recognize delays, and the ability to share this information with their healthcare provider.” \u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>As a parent fills out a record-keeping scorecard, the app will recommend whether to see a pediatrician for a developmental screening. The answers to some questions are a soothing reminder that children develop at different rates, so you can relax. At other times, the app may instruct a parent to call their pediatrician. (The American Association of Pediatrics also has an \u003ca href=\"https://motordelay.aap.org/\"> interactive activity tracker\u003c/a> that recommends when to consult a doctor.)\u003c/p>\n\u003cp>Autism isn’t the only condition that can delay cognitive, physical and emotional development. Young children \u003ca href=\"https://www.cdc.gov/ncbddd/developmentaldisabilities/specificconditions.html\" target=\"_blank\" rel=\"noopener\"> may have\u003c/a> undiagnosed hearing or vision loss, muscular dystrophy, Tourette’s syndrome, cerebral palsy or ADHD.\u003c/p>\n\u003caside class=\"aligncenter\">\u003ca href=\"https://www.cdc.gov/ncbddd/actearly/milestones/milestones-in-action.html\" target=\"_blank\" rel=\"noopener\">Videos: Developmental milestones at different ages\u003c/a>\u003c/aside>\n\u003cp>The app offers tips on activities that help a child grow, tailored to different ages, pertaining to things like discipline, reading skills, communication, education and physical affection.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Parents can also keep track of their kids' doctor appointments and sign up for reminders about booking a developmental screening.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/436442/cdc-app-tells-parents-when-to-be-concerned-about-child-development","authors":["8664"],"categories":["futureofyou_1060","futureofyou_452","futureofyou_1"],"tags":["futureofyou_555","futureofyou_854","futureofyou_1275","futureofyou_251","futureofyou_80","futureofyou_449"],"featImg":"futureofyou_436447","label":"futureofyou"},"futureofyou_435077":{"type":"posts","id":"futureofyou_435077","meta":{"index":"posts_1591205157","site":"futureofyou","id":"435077","score":null,"sort":[1504107174000]},"guestAuthors":[],"slug":"the-american-dad-is-getting-older-study","title":"The American Dad is Getting Older, Says Comprehensive Study","publishDate":1504107174,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>More American men are waiting to start a family until after the age of 40, according to a\u003cstrong> \u003c/strong>\u003ca href=\"https://academic.oup.com/humrep/article-abstract/doi/10.1093/humrep/dex267/4096427/The-age-of-fathers-in-the-USA-is-rising-an?redirectedFrom=fulltext\" target=\"_blank\" rel=\"noopener noreferrer\">study\u003c/a> published Wednesday in \u003cem>Human Reproduction\u003c/em>.\u003c/p>\n\u003caside class=\"pullquote alignright\">The oldest father recorded in the past 44 years was 88. The youngest was 11.\u003c/aside>\n\u003cp>Using the Centers for Disease Control's National Vital Statistics System, the first-ever comprehensive analysis of all reported births from 1975 to 2015 -- all 168,867,480 of them -- showed that mean average paternal age increased three years from 27.4 to 30.9.\u003c/p>\n\u003cp>Overall, the percentage of fathers over the age of 40 increased from four percent in 1975 to nearly nine percent in 2015. And one percent of all babies are now born to fathers over 50.\u003c/p>\n\u003cp>The oldest father recorded in the past 44 years was 88. The youngest was 11.\u003c/p>\n\u003cp>Dr. Michael Eisenberg, an assistant professor of urology at Stanford University School of Medicine, is senior author of the study. He was inspired to undertake the data analysis after becoming frustrated that all the birth-age demographic analyses track mothers, not fathers. The study took over a year to complete.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>It can be challenging to characterize paternity trends because slightly over 10 percent of U.S. birth records are missing the father's information.\u003c/p>\n\u003cp>\"Urologists are kind of gatekeepers for men’s reproductive health. This gives us a glimpse into the basic demographics of paternal populations, and that's important,\" says Eisenberg.\u003c/p>\n\u003cp>\u003cstrong>A Shifting Norm\u003c/strong>\u003c/p>\n\u003cp>Women have been waiting \u003ca href=\"http://time.com/4181151/first-time-moms-average-age/\" target=\"_blank\" rel=\"noopener noreferrer\">longer and longer\u003c/a> to enter motherhood, though fathers and mothers are both stretching out their prefamily years. The average age gap between first-time mothers and fathers is now 2.3 years.\u003c/p>\n\u003cp>\"The gap between the father's age and mother's age has declined, suggesting that maybe there’s a bit more parity now between parents,\" says Eisenberg. \"I think that's a good thing.\"\u003c/p>\n\u003cp>In May, the CDC \u003ca href=\"http://www.slate.com/blogs/xx_factor/2017/05/17/cdc_data_says_women_in_their_thirties_are_having_more_babies_than_women.html\">released data \u003c/a>that marked an important milestone in modern U.S. society: For the first time, more women are entering motherhood in their 30s than their 20s. In 2016, the birth rate among women ages 30 to 34 narrowly surpassed that of women 25 to 29.\u003c/p>\n\u003cp>The Stanford University analysis reported variations by race, education and even geography. While mean paternal age has increased across all races and ethnicities, Asian-Americans were the oldest dads, while African- and Hispanic-Americans were on the younger side of the spectrum. In 1972, the mean age of Japanese-American fathers was 30.7 on average. In 2015, it was just over 36 -- the steepest increase of all.\u003c/p>\n\u003cp>Fathers with college degrees are waiting the longest to have kids. Men who live in the Northeast are the oldest overall.\u003c/p>\n\u003cp>\u003cstrong>Reproductive Risks From Waiting For Fatherhood\u003c/strong>\u003c/p>\n\u003cp>It can be difficult to characterize who an \"older\" father is. Some studies include men over 35, others start the clock at age 40.\u003c/p>\n\u003cp>But a preponderance of studies do agree that the longer a man waits to have children, the higher the risk of his offspring developing \u003ca href=\"http://www.jaacap.org/article/S0890-8567(17)30070-9/fulltext\">autism or schizophrenia\u003c/a>, or being born with a birth defect.\u003c/p>\n\u003cp>\"Men who are 55 have a higher risk than those who are 35. The incidence is two to three times in men who are over 40 years old -- this seems to be the consensus right now,\" says Dr. Magdalena Janecka, who studies genetic and developmental psychiatry at the Icahn School of Medicine at Mount Sinai, in New York.\u003c/p>\n\u003cp>There are two widely studied, perhaps overlapping, hypotheses for this. One is that as men age, their sperm develop genetic mutations. \u003ca href=\"http://www.nature.com/nature/journal/v432/n7013/full/432048a.html?foxtrotcallback=true\">A 2004 study \u003c/a>published in \u003cem>Nature \u003c/em>found that the number of DNA mutations in sperm is three times higher in men aged 36–57 than in men under age 35. (The study is behind a paywall but the results are summarized \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2566050/\">here\u003c/a>).\u003c/p>\n\u003cp>The second hypothesis, which Janecka says has stronger grounding in research, is that men who get started as fathers later in life are a self-selecting group who may have their \u003ca href=\"http://www.jaacap.org/article/S0890-8567(17)30070-9/pdf\">own social development challenges\u003c/a>. Those traits then get passed on to their offspring.\u003c/p>\n\u003cp>\"They themselves may suffer from some autism traits; they may be more withdrawn, for instance,\" says Janecka. \"Those men would be more likely to have a child with autism at any time in life.\"\u003c/p>\n\u003cp>Both Janecka and Eisenberg point out that the autism risk, though well-documented, is still very small and statistically rare.\u003c/p>\n\u003cp>\"People do ask me about risk to offspring, being an older father. I tell them the risks are at a population level, not at an individual level,\" says Eisenberg.\u003c/p>\n\u003cp>But the numbers, now that he has them, do speak for themselves.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"When we’re talking about four million births a year, and one percent of them is to men over 50, that is potentially something you would see,\" he adds.\u003c/p>\n\n","blocks":[],"excerpt":"More American men are waiting to start a family until after the age of 40, according to a study published Wednesday.","status":"publish","parent":0,"modified":1504122470,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":26,"wordCount":817},"headData":{"title":"The American Dad is Getting Older, Says Comprehensive Study | KQED","description":"More American men are waiting to start a family until after the age of 40, according to a study published Wednesday.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"The American Dad is Getting Older, Says Comprehensive Study","datePublished":"2017-08-30T15:32:54.000Z","dateModified":"2017-08-30T19:47:50.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"435077 https://ww2.kqed.org/futureofyou/?p=435077","disqusUrl":"https://ww2.kqed.org/futureofyou/2017/08/30/the-american-dad-is-getting-older-study/","disqusTitle":"The American Dad is Getting Older, Says Comprehensive Study","path":"/futureofyou/435077/the-american-dad-is-getting-older-study","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>More American men are waiting to start a family until after the age of 40, according to a\u003cstrong> \u003c/strong>\u003ca href=\"https://academic.oup.com/humrep/article-abstract/doi/10.1093/humrep/dex267/4096427/The-age-of-fathers-in-the-USA-is-rising-an?redirectedFrom=fulltext\" target=\"_blank\" rel=\"noopener noreferrer\">study\u003c/a> published Wednesday in \u003cem>Human Reproduction\u003c/em>.\u003c/p>\n\u003caside class=\"pullquote alignright\">The oldest father recorded in the past 44 years was 88. The youngest was 11.\u003c/aside>\n\u003cp>Using the Centers for Disease Control's National Vital Statistics System, the first-ever comprehensive analysis of all reported births from 1975 to 2015 -- all 168,867,480 of them -- showed that mean average paternal age increased three years from 27.4 to 30.9.\u003c/p>\n\u003cp>Overall, the percentage of fathers over the age of 40 increased from four percent in 1975 to nearly nine percent in 2015. And one percent of all babies are now born to fathers over 50.\u003c/p>\n\u003cp>The oldest father recorded in the past 44 years was 88. The youngest was 11.\u003c/p>\n\u003cp>Dr. Michael Eisenberg, an assistant professor of urology at Stanford University School of Medicine, is senior author of the study. He was inspired to undertake the data analysis after becoming frustrated that all the birth-age demographic analyses track mothers, not fathers. The study took over a year to complete.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>It can be challenging to characterize paternity trends because slightly over 10 percent of U.S. birth records are missing the father's information.\u003c/p>\n\u003cp>\"Urologists are kind of gatekeepers for men’s reproductive health. This gives us a glimpse into the basic demographics of paternal populations, and that's important,\" says Eisenberg.\u003c/p>\n\u003cp>\u003cstrong>A Shifting Norm\u003c/strong>\u003c/p>\n\u003cp>Women have been waiting \u003ca href=\"http://time.com/4181151/first-time-moms-average-age/\" target=\"_blank\" rel=\"noopener noreferrer\">longer and longer\u003c/a> to enter motherhood, though fathers and mothers are both stretching out their prefamily years. The average age gap between first-time mothers and fathers is now 2.3 years.\u003c/p>\n\u003cp>\"The gap between the father's age and mother's age has declined, suggesting that maybe there’s a bit more parity now between parents,\" says Eisenberg. \"I think that's a good thing.\"\u003c/p>\n\u003cp>In May, the CDC \u003ca href=\"http://www.slate.com/blogs/xx_factor/2017/05/17/cdc_data_says_women_in_their_thirties_are_having_more_babies_than_women.html\">released data \u003c/a>that marked an important milestone in modern U.S. society: For the first time, more women are entering motherhood in their 30s than their 20s. In 2016, the birth rate among women ages 30 to 34 narrowly surpassed that of women 25 to 29.\u003c/p>\n\u003cp>The Stanford University analysis reported variations by race, education and even geography. While mean paternal age has increased across all races and ethnicities, Asian-Americans were the oldest dads, while African- and Hispanic-Americans were on the younger side of the spectrum. In 1972, the mean age of Japanese-American fathers was 30.7 on average. In 2015, it was just over 36 -- the steepest increase of all.\u003c/p>\n\u003cp>Fathers with college degrees are waiting the longest to have kids. Men who live in the Northeast are the oldest overall.\u003c/p>\n\u003cp>\u003cstrong>Reproductive Risks From Waiting For Fatherhood\u003c/strong>\u003c/p>\n\u003cp>It can be difficult to characterize who an \"older\" father is. Some studies include men over 35, others start the clock at age 40.\u003c/p>\n\u003cp>But a preponderance of studies do agree that the longer a man waits to have children, the higher the risk of his offspring developing \u003ca href=\"http://www.jaacap.org/article/S0890-8567(17)30070-9/fulltext\">autism or schizophrenia\u003c/a>, or being born with a birth defect.\u003c/p>\n\u003cp>\"Men who are 55 have a higher risk than those who are 35. The incidence is two to three times in men who are over 40 years old -- this seems to be the consensus right now,\" says Dr. Magdalena Janecka, who studies genetic and developmental psychiatry at the Icahn School of Medicine at Mount Sinai, in New York.\u003c/p>\n\u003cp>There are two widely studied, perhaps overlapping, hypotheses for this. One is that as men age, their sperm develop genetic mutations. \u003ca href=\"http://www.nature.com/nature/journal/v432/n7013/full/432048a.html?foxtrotcallback=true\">A 2004 study \u003c/a>published in \u003cem>Nature \u003c/em>found that the number of DNA mutations in sperm is three times higher in men aged 36–57 than in men under age 35. (The study is behind a paywall but the results are summarized \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2566050/\">here\u003c/a>).\u003c/p>\n\u003cp>The second hypothesis, which Janecka says has stronger grounding in research, is that men who get started as fathers later in life are a self-selecting group who may have their \u003ca href=\"http://www.jaacap.org/article/S0890-8567(17)30070-9/pdf\">own social development challenges\u003c/a>. Those traits then get passed on to their offspring.\u003c/p>\n\u003cp>\"They themselves may suffer from some autism traits; they may be more withdrawn, for instance,\" says Janecka. \"Those men would be more likely to have a child with autism at any time in life.\"\u003c/p>\n\u003cp>Both Janecka and Eisenberg point out that the autism risk, though well-documented, is still very small and statistically rare.\u003c/p>\n\u003cp>\"People do ask me about risk to offspring, being an older father. I tell them the risks are at a population level, not at an individual level,\" says Eisenberg.\u003c/p>\n\u003cp>But the numbers, now that he has them, do speak for themselves.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"When we’re talking about four million births a year, and one percent of them is to men over 50, that is potentially something you would see,\" he adds.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/435077/the-american-dad-is-getting-older-study","authors":["8664"],"categories":["futureofyou_1"],"tags":["futureofyou_555","futureofyou_1347","futureofyou_1275","futureofyou_916","futureofyou_1348"],"featImg":"futureofyou_435104","label":"futureofyou"},"futureofyou_415148":{"type":"posts","id":"futureofyou_415148","meta":{"index":"posts_1591205157","site":"futureofyou","id":"415148","score":null,"sort":[1498660244000]},"guestAuthors":[],"slug":"researcher-explains-what-inside-out-got-wrong-about-emotions","title":"Researcher Explains What 'Inside Out' Got Wrong About Emotions","publishDate":1498660244,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>Everything you thought you knew about the brain and emotions is basically wrong, says \u003ca href=\"http://www.northeastern.edu/cos/faculty/lisa-feldman-barrett/\">Lisa Feldman Barrett\u003c/a>, a distinguished professor of psychology at Northeastern University. Unlike the portrayal in the Pixar movie \"Inside Out,\" we don’t experience happiness, sadness, disgust, anger and other feelings as simple reactions to events, or even as discrete emotions.\u003c/p>\n\u003caside class=\"pullquote alignright\">'There are some emotions that some cultures have that other cultures don’t.' \u003c/aside>\n\u003cp>Rather, we construct our emotions from past experiences and vary them based on input, Barrett says. The brain constructs emotions the same way it creates experiences of color based on wavelengths of light. When the brain processes new life experience, it produces new variations in emotion.\u003c/p>\n\u003cp>Barrett \u003ca href=\"https://ww2.kqed.org/forum/2017/04/11/emotions-are-a-construct-of-the-brain-says-psychologist-lisa-feldman-barrett/\">recently spoke with\u003c/a> Michael Krasny, the host of KQED’s Forum radio show, to discuss why law enforcement’s playbook for \"reading\" emotions in body language is flawed, why particular emotions improve memory and keep the brain young, and how an autistic brain processes emotions differently from a neurotypical one. Her new book, “\u003ca href=\"https://www.panmacmillan.com/authors/lisa-feldman-barrett/how-emotions-are-made\" target=\"_blank\" rel=\"noopener noreferrer\">How Emotions are Made: The Secret Life of the Brain\u003c/a>,” explores these questions in depth.\u003c/p>\n\u003cp>Here are some excerpts from Barrett’s answers on the show, edited for length and readability.\u003c/p>\n\u003cp>\u003cstrong>Emotions Reside Everywhere – And Nowhere – in the Brain\u003c/strong>\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Scientists have been looking for the brain neurons that are devoted to sadness or fear for more than a century, and they haven’t been able to find them. Scientists used to believe that neurons embedded in the amygdala were the home of fear, for example.\u003c/p>\n\u003caside class=\"pullquote alignright\">'When it comes to emotion, variation is the norm – and every biological measure tells us that this is the case.'\u003c/aside>\n\u003cp>But we know that people can experience fear without a fully formed amygdala. And exactly the same networks are used when you’re angry, when you’re happy, when you’re thinking and remembering and so forth.\u003c/p>\n\u003cp>We’ve done a meta-analysis, finding every published paper, every brain imaging study where scientists are peering into the brain when people experience anger or fear or sadness. We statistically combined this result and found that there is no set of neurons anywhere in the brain, no region, that is dedicated to any single emotion.\u003c/p>\n\u003cp>\u003cstrong>When It Comes to Body Language, ‘Reading’ Emotions Can Be Misleading\u003c/strong>\u003c/p>\n\u003cp>Scientists have been searching for the physical pattern for anger or sadness \u003cspan style=\"font-weight: 400\">— \u003c/span>does your heart rate rise? Do you sweat? Do you frown? Do you smile? Different patterns in different emotions. So, the stereotype of anger is that you scowl, your cheeks get red, your blood pressure goes up, maybe you start to breathe more quickly.\u003c/p>\n\u003caside class=\"pullquote alignright\">'If you cultivate new experiences of gratitude or of awe, or even of anger ... you are seeding your brain to have more control, more choice, the next time you’re in a similar situation.'\u003c/aside>\n\u003cp>But scientists have discovered that people do lots of things in anger. People can tremble in anger, jump in anger. They can scream in anger. They can even laugh in the face of anger. Similarly, people smile when they’re sad. They scream when they’re happy. When it comes to emotion, variation is the norm \u003cspan style=\"font-weight: 400\">— \u003c/span>and every biological measure tells us that this is the case.\u003c/p>\n\u003cp>What we know about the research is that there is a particular kind of experimental method that when you use it, can make it look as if everybody scowls in anger and can recognize others scowling in anger. But when you use methods that mirror what people do in everyday life a bit better, you see that people don’t make a single expression in anger\u003c/p>\n\u003cp>\u003cstrong>Our Brains ‘Construct’ Emotions By Guessing\u003c/strong>\u003c/p>\n\u003cp>Perceivers are making guesses in the blink of an eye about what the facial movements mean. And understanding that you’re really guessing really changes how you read emotion in other people.\u003c/p>\n\u003cp>Our brain is using our past experiences to automatically guess what a facial movement means in terms of emotion. Brains are organized in a way that allows you to predict. So every sight, every smell, everything you experience including emotion, your brain is making a prediction, using past experience, about what sensations are going to happen next. And then it uses the input from the world and from your body to either confirm the experience, or to change those predictions. [contextly_sidebar id=\"Mirfbm4R13idJYXpyHxaAsSdAJIDMos4\"]\u003c/p>\n\u003cp>Pain is a really interesting example. Scientists who study pain have defined it as an emotion. There are sensations, and your brain is trying to make sense of where those sensations come from. An ache in your body, for example, can be disgust, can be longing for someone that you miss. It can be anger. It can also be hunger. It can be nausea, or simple fatigue. Your brain is constantly guessing, and using your past experience, it usually guesses pretty well.\u003c/p>\n\u003cp>\u003cstrong>Harnessing the Brain’s Predictive Capacities to Alter Your Emotions\u003c/strong>\u003c/p>\n\u003cp>You can use to your advantage that variation is the norm, in that you can cultivate new experiences of emotion. So if it’s the case that your brain is using past experience to construct your experiences in the present, then anything new that you construct in the present will seed your brain to construct those experiences more effortlessly in the future.\u003c/p>\n\u003cp>So if you cultivate new experiences of gratitude or of awe, or even of anger\u003cspan style=\"font-weight: 400\">— \u003c/span> where what your body feels like is different, but also what you do is different \u003cspan style=\"font-weight: 400\">— \u003c/span>then you are seeding your brain to have more control, more choice, the next time you’re in a similar situation.\u003c/p>\n\u003cp>\u003cstrong>Emotions Are Subject to Cultural Variation\u003c/strong>\u003c/p>\n\u003cp>Sometimes an emotion like sadness can mean something very different in one culture than another. And there are some emotions that some cultures have that other cultures don’t. So for example, there’s an emotion, \"gezellig,\" a Dutch word that means to feel coziness and comfort with those whom you love. It’s not that we can’t make that emotion, but our brains have to take experiences from the past and combine them in new ways to make that experience. This is what cognitive scientists call “conceptual combination.”\u003c/p>\n\u003cp>You and I can make \"gezellig,\" but look at how long it’s taken for me to describe it to you.\u003c/p>\n\u003cp>\u003cstrong>How Pushing Through Discomfort Keeps the Brain Young\u003c/strong>\u003c/p>\n\u003cp>We were doing research on the ways in which feelings influence memory, because we know that there aren’t dedicated parts of the brain for memory or for feeling. So it seemed evident that as people age, they rely more on their feelings as a guide for what to pay attention to and what to remember.\u003c/p>\n\u003cp>So we were running these experiments and what was noticed was in our sample of elderly participants, people over 65, about half of them on standard tests for memory in a way that was indistinguishable from the average 25-year-old. We found this to be exciting, because we’re really interested in trying to understand what the contributions are to successful aging.\u003c/p>\n\u003cp>We were doing brain imaging studies and we noticed a whole suite of brain regions that were not just thicker but also better connected in these “super-agers” when compared to the typical elderly participant. And then when we compared the “super-agers'’” brains to young people, we noticed no differences. So not only did they have youthful memory, they had youthful brains.\u003c/p>\n\u003caside class=\"pullquote alignright\">'Your brain is constantly guessing, and using your past experience, it usually guesses pretty well.’\u003c/aside>\n\u003cp>This makes a link between how well your brain is controlling the systems of your body and how good your memory is. These regions are also good for creating the simple feelings of pleasantness and unpleasantness that come from your body. What we think is going on is that super-agers have really good memories because when they start to feel uncomfortable in doing a hard task, instead of stopping, super-agers take this feeling of yuckiness as a cue to work harder. Discomfort may be a sign of weakness leaving the brain. So if you work hard and push through the yuck, we think the likelihood is that will be very good for your memory.\u003c/p>\n\u003cp>\u003cstrong>The Connection Between Emotions and Treating Autism\u003c/strong>\u003c/p>\n\u003cp>There are studies that have children or adolescents on the autism spectrum, where they teach children to recognize a scowl as anger, to recognize a pout as sadness, and so on. But their ability to learn these faces does not translate into improved social and emotional functioning in everyday life. The reason why is, people rarely scowl in anger and they rarely pout in sadness.\u003c/p>\n\u003cp>Scientists have known all along that this training in stereotypes is not going to prepare kids for social and emotional functioning in the real world.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>What’s interesting about brains of individuals who are on the autism spectrum is that unlike a neurotypical brain, which uses past experience to predict what’s about to happen, brains of people who are on the autistic spectrum aren’t structured to predict very well. As a consequence, they have very high levels of anxiety, because they’re unable to make sense of a lot of the sensory information in their world.\u003c/p>\n\n","blocks":[],"excerpt":"Our brains 'construct' emotions based on past experiences and predictions. Which means we can also cultivate new, helpful emotions, says psychologist Lisa Feldman Barrett. ","status":"publish","parent":0,"modified":1498613104,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":33,"wordCount":1601},"headData":{"title":"Researcher Explains What 'Inside Out' Got Wrong About Emotions | KQED","description":"Our brains 'construct' emotions based on past experiences and predictions. Which means we can also cultivate new, helpful emotions, says psychologist Lisa Feldman Barrett. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Researcher Explains What 'Inside Out' Got Wrong About Emotions","datePublished":"2017-06-28T14:30:44.000Z","dateModified":"2017-06-28T01:25:04.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"415148 https://ww2.kqed.org/futureofyou/?p=415148","disqusUrl":"https://ww2.kqed.org/futureofyou/2017/06/28/researcher-explains-what-inside-out-got-wrong-about-emotions/","disqusTitle":"Researcher Explains What 'Inside Out' Got Wrong About Emotions","path":"/futureofyou/415148/researcher-explains-what-inside-out-got-wrong-about-emotions","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Everything you thought you knew about the brain and emotions is basically wrong, says \u003ca href=\"http://www.northeastern.edu/cos/faculty/lisa-feldman-barrett/\">Lisa Feldman Barrett\u003c/a>, a distinguished professor of psychology at Northeastern University. Unlike the portrayal in the Pixar movie \"Inside Out,\" we don’t experience happiness, sadness, disgust, anger and other feelings as simple reactions to events, or even as discrete emotions.\u003c/p>\n\u003caside class=\"pullquote alignright\">'There are some emotions that some cultures have that other cultures don’t.' \u003c/aside>\n\u003cp>Rather, we construct our emotions from past experiences and vary them based on input, Barrett says. The brain constructs emotions the same way it creates experiences of color based on wavelengths of light. When the brain processes new life experience, it produces new variations in emotion.\u003c/p>\n\u003cp>Barrett \u003ca href=\"https://ww2.kqed.org/forum/2017/04/11/emotions-are-a-construct-of-the-brain-says-psychologist-lisa-feldman-barrett/\">recently spoke with\u003c/a> Michael Krasny, the host of KQED’s Forum radio show, to discuss why law enforcement’s playbook for \"reading\" emotions in body language is flawed, why particular emotions improve memory and keep the brain young, and how an autistic brain processes emotions differently from a neurotypical one. Her new book, “\u003ca href=\"https://www.panmacmillan.com/authors/lisa-feldman-barrett/how-emotions-are-made\" target=\"_blank\" rel=\"noopener noreferrer\">How Emotions are Made: The Secret Life of the Brain\u003c/a>,” explores these questions in depth.\u003c/p>\n\u003cp>Here are some excerpts from Barrett’s answers on the show, edited for length and readability.\u003c/p>\n\u003cp>\u003cstrong>Emotions Reside Everywhere – And Nowhere – in the Brain\u003c/strong>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Scientists have been looking for the brain neurons that are devoted to sadness or fear for more than a century, and they haven’t been able to find them. Scientists used to believe that neurons embedded in the amygdala were the home of fear, for example.\u003c/p>\n\u003caside class=\"pullquote alignright\">'When it comes to emotion, variation is the norm – and every biological measure tells us that this is the case.'\u003c/aside>\n\u003cp>But we know that people can experience fear without a fully formed amygdala. And exactly the same networks are used when you’re angry, when you’re happy, when you’re thinking and remembering and so forth.\u003c/p>\n\u003cp>We’ve done a meta-analysis, finding every published paper, every brain imaging study where scientists are peering into the brain when people experience anger or fear or sadness. We statistically combined this result and found that there is no set of neurons anywhere in the brain, no region, that is dedicated to any single emotion.\u003c/p>\n\u003cp>\u003cstrong>When It Comes to Body Language, ‘Reading’ Emotions Can Be Misleading\u003c/strong>\u003c/p>\n\u003cp>Scientists have been searching for the physical pattern for anger or sadness \u003cspan style=\"font-weight: 400\">— \u003c/span>does your heart rate rise? Do you sweat? Do you frown? Do you smile? Different patterns in different emotions. So, the stereotype of anger is that you scowl, your cheeks get red, your blood pressure goes up, maybe you start to breathe more quickly.\u003c/p>\n\u003caside class=\"pullquote alignright\">'If you cultivate new experiences of gratitude or of awe, or even of anger ... you are seeding your brain to have more control, more choice, the next time you’re in a similar situation.'\u003c/aside>\n\u003cp>But scientists have discovered that people do lots of things in anger. People can tremble in anger, jump in anger. They can scream in anger. They can even laugh in the face of anger. Similarly, people smile when they’re sad. They scream when they’re happy. When it comes to emotion, variation is the norm \u003cspan style=\"font-weight: 400\">— \u003c/span>and every biological measure tells us that this is the case.\u003c/p>\n\u003cp>What we know about the research is that there is a particular kind of experimental method that when you use it, can make it look as if everybody scowls in anger and can recognize others scowling in anger. But when you use methods that mirror what people do in everyday life a bit better, you see that people don’t make a single expression in anger\u003c/p>\n\u003cp>\u003cstrong>Our Brains ‘Construct’ Emotions By Guessing\u003c/strong>\u003c/p>\n\u003cp>Perceivers are making guesses in the blink of an eye about what the facial movements mean. And understanding that you’re really guessing really changes how you read emotion in other people.\u003c/p>\n\u003cp>Our brain is using our past experiences to automatically guess what a facial movement means in terms of emotion. Brains are organized in a way that allows you to predict. So every sight, every smell, everything you experience including emotion, your brain is making a prediction, using past experience, about what sensations are going to happen next. And then it uses the input from the world and from your body to either confirm the experience, or to change those predictions. \u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Pain is a really interesting example. Scientists who study pain have defined it as an emotion. There are sensations, and your brain is trying to make sense of where those sensations come from. An ache in your body, for example, can be disgust, can be longing for someone that you miss. It can be anger. It can also be hunger. It can be nausea, or simple fatigue. Your brain is constantly guessing, and using your past experience, it usually guesses pretty well.\u003c/p>\n\u003cp>\u003cstrong>Harnessing the Brain’s Predictive Capacities to Alter Your Emotions\u003c/strong>\u003c/p>\n\u003cp>You can use to your advantage that variation is the norm, in that you can cultivate new experiences of emotion. So if it’s the case that your brain is using past experience to construct your experiences in the present, then anything new that you construct in the present will seed your brain to construct those experiences more effortlessly in the future.\u003c/p>\n\u003cp>So if you cultivate new experiences of gratitude or of awe, or even of anger\u003cspan style=\"font-weight: 400\">— \u003c/span> where what your body feels like is different, but also what you do is different \u003cspan style=\"font-weight: 400\">— \u003c/span>then you are seeding your brain to have more control, more choice, the next time you’re in a similar situation.\u003c/p>\n\u003cp>\u003cstrong>Emotions Are Subject to Cultural Variation\u003c/strong>\u003c/p>\n\u003cp>Sometimes an emotion like sadness can mean something very different in one culture than another. And there are some emotions that some cultures have that other cultures don’t. So for example, there’s an emotion, \"gezellig,\" a Dutch word that means to feel coziness and comfort with those whom you love. It’s not that we can’t make that emotion, but our brains have to take experiences from the past and combine them in new ways to make that experience. This is what cognitive scientists call “conceptual combination.”\u003c/p>\n\u003cp>You and I can make \"gezellig,\" but look at how long it’s taken for me to describe it to you.\u003c/p>\n\u003cp>\u003cstrong>How Pushing Through Discomfort Keeps the Brain Young\u003c/strong>\u003c/p>\n\u003cp>We were doing research on the ways in which feelings influence memory, because we know that there aren’t dedicated parts of the brain for memory or for feeling. So it seemed evident that as people age, they rely more on their feelings as a guide for what to pay attention to and what to remember.\u003c/p>\n\u003cp>So we were running these experiments and what was noticed was in our sample of elderly participants, people over 65, about half of them on standard tests for memory in a way that was indistinguishable from the average 25-year-old. We found this to be exciting, because we’re really interested in trying to understand what the contributions are to successful aging.\u003c/p>\n\u003cp>We were doing brain imaging studies and we noticed a whole suite of brain regions that were not just thicker but also better connected in these “super-agers” when compared to the typical elderly participant. And then when we compared the “super-agers'’” brains to young people, we noticed no differences. So not only did they have youthful memory, they had youthful brains.\u003c/p>\n\u003caside class=\"pullquote alignright\">'Your brain is constantly guessing, and using your past experience, it usually guesses pretty well.’\u003c/aside>\n\u003cp>This makes a link between how well your brain is controlling the systems of your body and how good your memory is. These regions are also good for creating the simple feelings of pleasantness and unpleasantness that come from your body. What we think is going on is that super-agers have really good memories because when they start to feel uncomfortable in doing a hard task, instead of stopping, super-agers take this feeling of yuckiness as a cue to work harder. Discomfort may be a sign of weakness leaving the brain. So if you work hard and push through the yuck, we think the likelihood is that will be very good for your memory.\u003c/p>\n\u003cp>\u003cstrong>The Connection Between Emotions and Treating Autism\u003c/strong>\u003c/p>\n\u003cp>There are studies that have children or adolescents on the autism spectrum, where they teach children to recognize a scowl as anger, to recognize a pout as sadness, and so on. But their ability to learn these faces does not translate into improved social and emotional functioning in everyday life. The reason why is, people rarely scowl in anger and they rarely pout in sadness.\u003c/p>\n\u003cp>Scientists have known all along that this training in stereotypes is not going to prepare kids for social and emotional functioning in the real world.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>What’s interesting about brains of individuals who are on the autism spectrum is that unlike a neurotypical brain, which uses past experience to predict what’s about to happen, brains of people who are on the autistic spectrum aren’t structured to predict very well. As a consequence, they have very high levels of anxiety, because they’re unable to make sense of a lot of the sensory information in their world.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/415148/researcher-explains-what-inside-out-got-wrong-about-emotions","authors":["8664"],"categories":["futureofyou_1"],"tags":["futureofyou_555","futureofyou_1316","futureofyou_56","futureofyou_1314","futureofyou_1275","futureofyou_1315","futureofyou_1317"],"featImg":"futureofyou_415174","label":"futureofyou"},"futureofyou_357617":{"type":"posts","id":"futureofyou_357617","meta":{"index":"posts_1591205157","site":"futureofyou","id":"357617","score":null,"sort":[1490031916000]},"guestAuthors":[],"slug":"sesame-street-to-introduce-muppet-with-autism","title":"Sesame Street to Introduce Muppet With Autism (Video)","publishDate":1490031916,"format":"aside","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>https://www.youtube.com/watch?v=1FeuSdL61MY\u003c/p>\n\u003cp>Folks on Sesame Street have a way of making everyone feel accepted.\u003c/p>\n\u003cp>That certainly goes for Julia, a Muppet youngster with blazing red hair, bright green eyes — and autism. Rather than being treated like an outsider, which too often is the plight of kids on the spectrum, Julia is one of the gang.\u003c/p>\n\u003cp>Look: On this friendliest of streets (actually Studio J at New York's Kaufman Astoria Studios, where \"Sesame Street\" lives) Julia is about to play a game with Oscar, Abby and Grover. In this scene being taped for airing next season, these Muppet chums have been challenged to spot objects shaped like squares or circles or triangles.\u003c/p>\n\u003cp>\"You're lucky,\" says Abby to Grover. \"You have Julia on your team, and she is really good at finding shapes!\"\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>With that, they skedaddle, an exit that calls for the six Muppeteers squatted out of sight below them to scramble accordingly. Joining her pals, Julia (performed by Stacey Gordon) takes off hunting.\u003c/p>\n\u003cp>For more than a year, Julia has existed in print and digital illustrations as the centerpiece of a multifaceted initiative by Sesame Workshop called \"Sesame Street and Autism: See Amazing in All Children.\"\u003c/p>\n\u003cp>She has been the subject of a storybook released along with videos, e-books, an app and website. The goal is to promote a better understanding of what the Autism Speaks advocacy group describes as \"a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences.\"\u003c/p>\n\u003cp>But now Julia has been brought to life in fine Muppet fettle. She makes her TV debut on \"Sesame Street\" in the \"Meet Julia\" episode airing April 10 on both PBS and HBO. Additional videos featuring Julia will be available online.\u003c/p>\n\u003cp>https://www.youtube.com/watch?v=M8QQRtA0hVA\u003c/p>\n\u003cp>Developing Julia and all the other components of this campaign has required years of consultation with organizations, experts and families within the autism community, according to Jeanette Betancourt, Sesame Workshop's senior vice president of U.S. Social Impact.\u003c/p>\n\u003cp>\"In the U.S., one in 68 children is diagnosed with autism spectrum disorder,\" she says. \"We wanted to promote a better understanding and reduce the stigma often found around these children. We're modeling the way both children and adults can look at autism from a strength-based perspective: finding things that all children share.\"\u003c/p>\n\u003cp>Julia is at the heart of this effort. But while she represents the full range of children on the spectrum, she isn't meant to typify each one of them: \"Just as we look at all children as being unique, we should do the same thing when we're looking at children with autism,\" Betancourt says.\u003c/p>\n\u003cp>It was with keen interest that Stacey Gordon first learned of Julia more than a year ago. \"I said, 'If she's ever a puppet, I want to BE Julia!'\"\u003c/p>\n\u003cp>No wonder. Gordon is a Phoenix-based puppeteer who performs, conducts classes and workshops, and creates whimsical puppets for sale to the public.\u003c/p>\n\u003cp>She also has a son with autism, and, before she started her family, was a therapist to youngsters on the spectrum.\u003c/p>\n\u003cp>Although she figured her chances of landing the dream role of Julia were nil, her contacts in the puppet world paid off: Two friends who worked as Muppeteers on \"Sesame Street\" dropped her name to the producers. After submitting tapes, then coming to New York for an audition, she was hired.\u003c/p>\n\u003cp>In the introductory segment, Julia is having fun with Abby and Elmo when Big Bird walks up. He wants to be her new friend, but she doesn't speak to him. He thinks she doesn't like him.\u003c/p>\n\u003cp>\"She does things just a little differently, in a Julia sort of way,\" Abby informs him.\u003c/p>\n\u003cp>Julia, chuckling, then displays a different-but-fun way of playing tag, and everyone joins in. But when a siren wails, she covers her ears and looks stricken.\u003c/p>\n\u003cp>\"She needs to take a break,\" Big Bird's human friend Alan calmly explains. Soon, all is well and play resumes.\u003c/p>\n\u003cp>\"The 'Meet Julia' episode is something that I wish my son's friends had been able to see when they were small,\" says Gordon. \"I remember him having meltdowns and his classmates not understanding how to react.\"\u003c/p>\n\u003cp>Gordon says her son, now 13, isn't drawn to puppetry. \"He's more interested in math and science, and plays the piano brilliantly,\" she says with pride.\u003c/p>\n\u003cp>But she's having a blast being part of the show that helped hook her, as a child, on puppeteering.\u003c/p>\n\u003cp>\"It is so much fun to be on set with everyone, and get to play up all the positive things I've seen with the kids that I've worked with,\" Gordon says. \"At the same time, I come at this with a reverence. I don't want to let the autism community down.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003c!-- iframe plugin v.4.3 wordpress.org/plugins/iframe/ -->\u003cbr>\n\u003ciframe width=\"600\" height=\"338\" src=\"https://www.npr.org/player/embed/520577117/520788209\" frameborder=\"0\" scrolling=\"no\" class=\"iframe-class\">\u003c/iframe>\u003c/p>\n\n","blocks":[],"excerpt":"Julia, a Muppet with autism, will make her TV debut on a 'Sesame Street' episode airing April 10 on PBS and HBO. ","status":"publish","parent":0,"modified":1490053613,"stats":{"hasAudio":false,"hasVideo":true,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":26,"wordCount":831},"headData":{"title":"Sesame Street to Introduce Muppet With Autism (Video) | KQED","description":"Julia, a Muppet with autism, will make her TV debut on a 'Sesame Street' episode airing April 10 on PBS and HBO. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Sesame Street to Introduce Muppet With Autism (Video)","datePublished":"2017-03-20T17:45:16.000Z","dateModified":"2017-03-20T23:46:53.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"357617 https://ww2.kqed.org/futureofyou/?p=357617","disqusUrl":"https://ww2.kqed.org/futureofyou/2017/03/20/sesame-street-to-introduce-muppet-with-autism/","disqusTitle":"Sesame Street to Introduce Muppet With Autism (Video)","source":"Future of You","nprByline":"Frazier Moore\u003cbr />Associated Press","path":"/futureofyou/357617/sesame-street-to-introduce-muppet-with-autism","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/1FeuSdL61MY'\n title='//www.youtube.com/embed/1FeuSdL61MY'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003cp>Folks on Sesame Street have a way of making everyone feel accepted.\u003c/p>\n\u003cp>That certainly goes for Julia, a Muppet youngster with blazing red hair, bright green eyes — and autism. Rather than being treated like an outsider, which too often is the plight of kids on the spectrum, Julia is one of the gang.\u003c/p>\n\u003cp>Look: On this friendliest of streets (actually Studio J at New York's Kaufman Astoria Studios, where \"Sesame Street\" lives) Julia is about to play a game with Oscar, Abby and Grover. In this scene being taped for airing next season, these Muppet chums have been challenged to spot objects shaped like squares or circles or triangles.\u003c/p>\n\u003cp>\"You're lucky,\" says Abby to Grover. \"You have Julia on your team, and she is really good at finding shapes!\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>With that, they skedaddle, an exit that calls for the six Muppeteers squatted out of sight below them to scramble accordingly. Joining her pals, Julia (performed by Stacey Gordon) takes off hunting.\u003c/p>\n\u003cp>For more than a year, Julia has existed in print and digital illustrations as the centerpiece of a multifaceted initiative by Sesame Workshop called \"Sesame Street and Autism: See Amazing in All Children.\"\u003c/p>\n\u003cp>She has been the subject of a storybook released along with videos, e-books, an app and website. The goal is to promote a better understanding of what the Autism Speaks advocacy group describes as \"a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences.\"\u003c/p>\n\u003cp>But now Julia has been brought to life in fine Muppet fettle. She makes her TV debut on \"Sesame Street\" in the \"Meet Julia\" episode airing April 10 on both PBS and HBO. Additional videos featuring Julia will be available online.\u003c/p>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/M8QQRtA0hVA'\n title='//www.youtube.com/embed/M8QQRtA0hVA'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003cp>Developing Julia and all the other components of this campaign has required years of consultation with organizations, experts and families within the autism community, according to Jeanette Betancourt, Sesame Workshop's senior vice president of U.S. Social Impact.\u003c/p>\n\u003cp>\"In the U.S., one in 68 children is diagnosed with autism spectrum disorder,\" she says. \"We wanted to promote a better understanding and reduce the stigma often found around these children. We're modeling the way both children and adults can look at autism from a strength-based perspective: finding things that all children share.\"\u003c/p>\n\u003cp>Julia is at the heart of this effort. But while she represents the full range of children on the spectrum, she isn't meant to typify each one of them: \"Just as we look at all children as being unique, we should do the same thing when we're looking at children with autism,\" Betancourt says.\u003c/p>\n\u003cp>It was with keen interest that Stacey Gordon first learned of Julia more than a year ago. \"I said, 'If she's ever a puppet, I want to BE Julia!'\"\u003c/p>\n\u003cp>No wonder. Gordon is a Phoenix-based puppeteer who performs, conducts classes and workshops, and creates whimsical puppets for sale to the public.\u003c/p>\n\u003cp>She also has a son with autism, and, before she started her family, was a therapist to youngsters on the spectrum.\u003c/p>\n\u003cp>Although she figured her chances of landing the dream role of Julia were nil, her contacts in the puppet world paid off: Two friends who worked as Muppeteers on \"Sesame Street\" dropped her name to the producers. After submitting tapes, then coming to New York for an audition, she was hired.\u003c/p>\n\u003cp>In the introductory segment, Julia is having fun with Abby and Elmo when Big Bird walks up. He wants to be her new friend, but she doesn't speak to him. He thinks she doesn't like him.\u003c/p>\n\u003cp>\"She does things just a little differently, in a Julia sort of way,\" Abby informs him.\u003c/p>\n\u003cp>Julia, chuckling, then displays a different-but-fun way of playing tag, and everyone joins in. But when a siren wails, she covers her ears and looks stricken.\u003c/p>\n\u003cp>\"She needs to take a break,\" Big Bird's human friend Alan calmly explains. Soon, all is well and play resumes.\u003c/p>\n\u003cp>\"The 'Meet Julia' episode is something that I wish my son's friends had been able to see when they were small,\" says Gordon. \"I remember him having meltdowns and his classmates not understanding how to react.\"\u003c/p>\n\u003cp>Gordon says her son, now 13, isn't drawn to puppetry. \"He's more interested in math and science, and plays the piano brilliantly,\" she says with pride.\u003c/p>\n\u003cp>But she's having a blast being part of the show that helped hook her, as a child, on puppeteering.\u003c/p>\n\u003cp>\"It is so much fun to be on set with everyone, and get to play up all the positive things I've seen with the kids that I've worked with,\" Gordon says. \"At the same time, I come at this with a reverence. I don't want to let the autism community down.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003c!-- iframe plugin v.4.3 wordpress.org/plugins/iframe/ -->\u003cbr>\n\u003ciframe width=\"600\" height=\"338\" src=\"https://www.npr.org/player/embed/520577117/520788209\" frameborder=\"0\" scrolling=\"no\" class=\"iframe-class\">\u003c/iframe>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/357617/sesame-street-to-introduce-muppet-with-autism","authors":["byline_futureofyou_357617"],"categories":["futureofyou_1","futureofyou_73"],"tags":["futureofyou_674","futureofyou_555","futureofyou_491","futureofyou_1219"],"featImg":"futureofyou_357622","label":"source_futureofyou_357617"},"futureofyou_266305":{"type":"posts","id":"futureofyou_266305","meta":{"index":"posts_1591205157","site":"futureofyou","id":"266305","score":null,"sort":[1477764025000]},"guestAuthors":[],"slug":"ecstasy-party-drug-offers-hope-for-easing-social-anxiety-in-autistic-adults","title":"Can Ecstasy Help Relieve Social Anxiety Epidemic Among Autistic People?","publishDate":1477764025,"format":"audio","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>For a long time, Daniel Au Valencia got the message that she was wrong, wrong, wrong. She stood wrong. She talked wrong. She looked at people wrong.\u003c/p>\n\u003cp>“There’s a lot of shame around autism,” she says. “There’s a lot of being told you look weird.”\u003c/p>\n\u003cp>\u003ca href=\"http://actingnt.blogspot.com/\">Valencia\u003c/a>, 22, often taps her feet when talking to someone. Or she’ll flap her hands. She says those movements help her communicate emotions and stay calm.\u003c/p>\n\u003caside class=\"alignright\">\u003ca href=\"#note\">A note on pronouns\u003c/a>\u003c/aside>\n\u003cp>“A common question is, ‘Why are you doing that?' in a very accusatory tone,” she says.\u003c/p>\n\u003cp>Don't even get her started on eye contact. A social skills teacher once tried to show her how to make eye contact without making people uncomfortable.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Don’t avoid it, but don’t stare.\u003c/p>\n\u003cp>“What I would have to do is, \"Okay, eye contact. One, two, three, glance away, glance back. One, two, three, glance away,’” Valencia explains. “And at that point, I’m no longer listening, I am pretending to listen.”\u003c/p>\n\u003cp>A lot of people just walk away.\u003c/p>\n\u003cp>“It can be anxiety-provoking,” she says. “That anxiety comes from being excluded, being rejected, being ridiculed for things that are just part of naturally being me.”\u003c/p>\n\u003cp>Valencia likes hanging out with people. She’s into salsa dancing, acting, improv and Pokemon Go. But sometimes social situations can be so stressful that Valencia hangs back on the sidelines, or avoids them altogether. She never answers the phone.\u003c/p>\n\u003cp>“It creates a cycle of self-judgment,” she says, “and makes the anxiety worse.”\u003c/p>\n\u003cfigure id=\"attachment_266972\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/MDMA_image-e1477009038956.jpg\">\u003cimg class=\"wp-image-266972 size-large\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/MDMA_image-1020x791.jpg\" alt=\"MDMA_image\" width=\"640\" height=\"496\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Daniel Au Valencia participated in a pilot study examining the potential of MDMA as a treatment for social anxiety in autistic adults. \u003ccite>(April Dembosky/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Experimental Study\u003c/strong>\u003c/p>\n\u003cp>Then last year Valencia heard about an unusual experimental study. Unlike a lot of other studies, this one didn’t say anything about trying to “cure autism.” This one was exploring a treatment specifically for social anxiety in autistic adults.\u003c/p>\n\u003cp>“Anxiety, unlike autism, is actually a problem that you might want to get rid of,” Valencia says.\u003c/p>\n\u003cp>Many traditional therapies don’t work for autistic people, says Nick Walker, an autistic advocate and consultant on the new study, because they reinforce stigma around autism and are “designed to coerce autistic people into acting like they’re not autistic.”\u003c/p>\n\u003cp>He sees this new research as a uniquely “culturally appropriate” approach to addressing the “epidemic” of social anxiety in autistic adults – anxiety caused by a lifetime of repeated, traumatic social interactions.\u003c/p>\n\u003cp>The treatment is MDMA, known more commonly as Ecstacy or Molly. On the street, it is often cut with speed or other drugs, and is popular among ravers for lowering inhibitions, heightening physical sensations, and making people feel all lovey.\u003c/p>\n\u003cp>But researchers are finding that pure MDMA has potential to be a true medicine. Early studies backed by MAPS, the Multidisciplinary Association of Psychedelic Studies based in Santa Cruz, show it can ease or erase symptoms of post-traumatic stress disorder. In \u003ca href=\"http://www.maps.org/research-archive/publications/Oehen_2012_MDMA_PTSD_Swisstudy.pdf\">one study\u003c/a>, 83 percent of study participants treated with MDMA and psychotherapy were cured of their PTSD, compared to 25 percent who were cured from talk therapy alone.\u003c/p>\n\u003cp>“MDMA creates a sensation of feeling safe,” says psychologist \u003ca href=\"http://www.icpr2016.nl/speakers/alicia-danforth-phd/\">Alicia Danforth\u003c/a>, one of the researchers conducting the social anxiety study at UCLA’s Los Angeles Biomedical Research Institute, along with psychiatrist \u003ca href=\"http://www.harboruclapsych.com/charles-s-grob-m-d/\">Charles Grob\u003c/a>.\u003c/p>\n\u003caside class=\"pullquote alignright\">'I felt the changes in my body. My bodily needs were radically altered.'\u003ccite>Daniel Au Valencia, Study participant\u003c/cite>\u003c/aside>\n\u003cp>MDMA floods the brain with serotonin and dopamine, they say, and quiets the fear response from the amygdala, allowing people to confront past traumatic experiences without becoming overwhelmed. Or they can try new things without fear or inhibition getting in the way.\u003c/p>\n\u003cp>“It creates a practice environment to try different social skills out,” Danforth says. “MDMA can be a bit like training wheels for the psyche.”\u003c/p>\n\u003cp>Valencia is one of just 12 autistic adults participating in the pilot study. Given the small size, researchers won’t get statistically meaningful data on the efficacy of MDMA in treating social anxiety. Their focus is proving that this research can be done safely in this population, with the hopes that others will conduct larger-scale studies.\u003c/p>\n\u003cp>The treatment consists of two MDMA sessions, 10 a.m. to 6 p.m., six weeks apart. Danforth and Grob meet with each study participant several times before and after each session for psychotherapy and to measure their social anxiety levels.\u003c/p>\n\u003cp>Before the first MDMA session, they ask participants to set an intention. Danforth says they want them to think about how they hope to grow or change from the treatment.\u003c/p>\n\u003cp>“It can be something simple: ‘I want to be better at small talk, or I want to learn the skill of asking someone out on a date,’” Danforth says. “It can also be very large, ‘I’m working on forgiveness or unresolved grief or loss.’”\u003c/p>\n\u003cp>Valencia’s goal was to be more assertive.\u003c/p>\n\u003cp>“One of the things that makes anxiety go away is to be in control of the situation rather than waiting for things to happen,” she says.\u003c/p>\n\u003cp>\u003cstrong>The First Session\u003c/strong>\u003c/p>\n\u003cp>Valencia arrived at 10 a.m. for her first MDMA session at a bland office building on the UCLA campus. Researchers transformed the room to a kind of den that Danforth describes as “autism friendly” -- soft lighting, soothing colors, and a luxury leather recliner facing a wall-sized poster of a forest canopy with light streaming through the trees.\u003c/p>\n\u003cp>New-age flute music played over the computer speakers as Valencia swallowed the MDMA capsule. Within a half hour, she knew it was not a placebo.\u003c/p>\n\u003cp>“I felt the changes in my body,” Valencia describes. “My bodily needs were radically altered.”\u003c/p>\n\u003cp>She describes one moment that was particularly powerful, when researchers brought in a plate of grapes.\u003c/p>\n\u003cp>“I bit into half a grape,” Valencia says. “I felt the flavors, the texture, the nuance.”\u003c/p>\n\u003cp>This sparked a classic psychedelic epiphany.\u003c/p>\n\u003cp>“Wow, I can really enjoy every bit of life more, if I can do it mindfully,” she says.\u003c/p>\n\u003cp>Later in the session, she felt a rush of energy in her body and said, “I feel like dancing.”\u003c/p>\n\u003cp>Then Valencia did something that would normally take her eons to build up the courage to do.\u003c/p>\n\u003cp>She asked Danforth if she would care to salsa.\u003c/p>\n\u003cp>“I was thinking, my intention is to be more assertive,” Valencia says. “Well, one part of being assertive is ask for what you want.”\u003c/p>\n\u003cp>Danforth says in the context of the therapy and Valencia’s intention, this was completely appropriate. It was in keeping with Danforth’s previous research, where she collected qualitative reports from autistic adults who had taken MDMA recreationally.\u003c/p>\n\u003cp>“We call them the Five C’s,” she says. “People reported changes in their level of courage or confidence, communication, feeling connected, a sense of communion or belonging, and mental clarity.”\u003c/p>\n\u003cfigure id=\"attachment_266943\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/MDMA_1-e1477009669302.jpg\">\u003cimg class=\"size-large wp-image-266943\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/MDMA_1-1020x765.jpg\" alt='Valencia uses emotion cards to help her understand and articulate her feelings. There are about 60 in the deck, including a few \"make your own\" cards.' width=\"640\" height=\"480\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Valencia uses emotion cards to help her understand and articulate her feelings. There are about 60 in the deck, including a few \"make your own\" cards. \u003ccite>(April Dembosky/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Follow-Up\u003c/strong>\u003c/p>\n\u003cp>The day after the MDMA session, the researchers meet with each participant to talk about what happened. Then they call them every day for a week after that to check in.\u003c/p>\n\u003cp>“The treatment is just a day,” Danforth says. “It’s what you do with those insights and how you integrate it into your everyday life.”\u003c/p>\n\u003cp>After her first session, Valencia started using a deck of “emotion cards” each day to help her understand what she was feeling. Each card has a word – “peaceful,” “loving,” “uncomfortable,” “frustrated,” “receptive” -- with a corresponding illustration.\u003c/p>\n\u003cp>“I’ve learned about the importance of connecting with your emotions,” she says. “I have learned that you can experience a whole lot of different emotions at once.”\u003c/p>\n\u003cp>While that may seem innate for a lot of typically developing individuals, it’s novel for a lot of autistic people, Danforth says. MDMA is known for helping people get clarity about their feeling states, to find words to express them, she says. That, in turn, helps people articulate their needs so they can “shape the world to be more to their liking.”\u003c/p>\n\u003cp>That was one of Valencia’s big takeaways: “Knowing that I have a choice,” she says. “Anytime something is bothering me, I can do something about it.”\u003c/p>\n\u003cp>\u003cstrong>The Second Session\u003c/strong>\u003c/p>\n\u003cp>When it was time for Valencia’s second MDMA session, she felt her original goal of being more assertive was now not quite right. It felt like a concession to societal pressure to fit in. She needed to let go of that, she says, and release the pressure she was putting on herself to always be involved, to be better all the time, to be different.\u003c/p>\n\u003cp>“In session number two, there was a moment I was just sitting in a big comfy chair,” Valencia says. “Letting my hands do whatever my hands wanted to do, kind of floating around. It looks like nothing is happening.”\u003c/p>\n\u003cp>But in fact, Valencia says, her mind was racing with thoughts, one idea popping up after another.\u003c/p>\n\u003cp>“And I thought, ‘Oh, these are some good ideas. I should write them down,” she says. “And then I stopped myself. ‘Do I have to do this? I can just sit here. And enjoy them.’”\u003c/p>\n\u003cp>When she flipped through the emotion cards, she picked one where the illustration was a swirl of blackness. The word was “depressed,” but Valencia says she saw something else.\u003c/p>\n\u003cp>“Not having to do something in every moment, not having to \u003cem>feel \u003c/em>anything for just a couple hours,” she says. “That was such a relief.”\u003c/p>\n\u003cp>\u003cstrong>Reflections \u003c/strong>\u003c/p>\n\u003cp>Valencia completed the treatment last year. It’s impossible to draw a direct line between the treatment and how Valencia is doing right now, but she says she’s doing great. She’s got a steady full-time job, her own apartment, and she just got married. The study is still ongoing, so Valencia won’t know if her scores on the social anxiety tests improved until all participants finish the treatment and the researchers analyze the data.\u003c/p>\n\u003cp>But she says her biggest takeaway from the experiment is more about emotions than social anxiety.\u003c/p>\n\u003cp>She says she’s learned that there’s no such thing as good emotions or bad emotions.\u003c/p>\n\u003cp>“All emotions deserve to exist,” she says.\u003c/p>\n\u003cp>This underscores a process of transformation Valencia started a couple years before the MDMA treatment around her autistic identity. She started reading essays by Nick Walker, the autism advocate based in Berkeley. He rejects the notion that autism is a disease, the same way the gay community rejects the notion that homosexuality is a disease.\u003c/p>\n\u003cp>Walker says autistic brains are simply different. They’re part of the patchwork of neurodiversity in the human population.\u003c/p>\n\u003cp>“There’s the dominant belief in society that there's good brains and bad brains,” Valencia says. “And from a neurodiversity perspective, all those concepts are no longer valid.”\u003c/p>\n\u003cp>After the MDMA treatment, Valencia started to see emotions in the same way, along the same continuum of self-acceptance.\u003c/p>\n\u003cp>“Once you do away with that most basic of dichotomies, good versus bad, and just make it all sort of a jumbled mess of the same thing, then you can either hate yourself as a whole or you can accept and love yourself as a whole,” she says. “And I think, it’s not always as easy as making a decision, but it’s pretty obvious which one is preferable.”\u003ca id=\"note\">\u003c/a>\u003c/p>\n\u003cp>\u003cem>Editor's Note:\u003c/em>\u003c/p>\n\u003cp>\u003cem>After completing the full course of MDMA treatment and working on assertiveness, Valencia began asking friends and acquaintances to use the pronouns “they, them, their.” Valencia identifies as gender-vague.\u003c/em>\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>Using “they” or “them” to refer to an individual presents certain grammatical and syntactical challenges, and in light of this, Valencia asked KQED to use female pronouns instead.\u003c/p>\n\n","blocks":[],"excerpt":"Daniel Au Valencia had always gotten the message she talked wrong, stood wrong, looked at people wrong. So she signed up for an experimental trial on the efficacy of MDMA for treating social anxiety.","status":"publish","parent":0,"modified":1477764383,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":70,"wordCount":2140},"headData":{"title":"Can Ecstasy Help Relieve Social Anxiety Epidemic Among Autistic People? | KQED","description":"Daniel Au Valencia had always gotten the message she talked wrong, stood wrong, looked at people wrong. So she signed up for an experimental trial on the efficacy of MDMA for treating social anxiety.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Can Ecstasy Help Relieve Social Anxiety Epidemic Among Autistic People?","datePublished":"2016-10-29T18:00:25.000Z","dateModified":"2016-10-29T18:06:23.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"266305 http://ww2.kqed.org/futureofyou/?p=266305","disqusUrl":"https://ww2.kqed.org/futureofyou/2016/10/29/ecstasy-party-drug-offers-hope-for-easing-social-anxiety-in-autistic-adults/","disqusTitle":"Can Ecstasy Help Relieve Social Anxiety Epidemic Among Autistic People?","source":"Future of You","audioUrl":"http://www.kqed.org/.stream/anon/radio/science/2016/10/MDMAStudyWEBDembosky161024.mp3","customPermalink":"2016/10/24/ecstasy-party-drug-offers-hope-for-easing-social-anxiety-in-autistic-adults/","path":"/futureofyou/266305/ecstasy-party-drug-offers-hope-for-easing-social-anxiety-in-autistic-adults","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>For a long time, Daniel Au Valencia got the message that she was wrong, wrong, wrong. She stood wrong. She talked wrong. She looked at people wrong.\u003c/p>\n\u003cp>“There’s a lot of shame around autism,” she says. “There’s a lot of being told you look weird.”\u003c/p>\n\u003cp>\u003ca href=\"http://actingnt.blogspot.com/\">Valencia\u003c/a>, 22, often taps her feet when talking to someone. Or she’ll flap her hands. She says those movements help her communicate emotions and stay calm.\u003c/p>\n\u003caside class=\"alignright\">\u003ca href=\"#note\">A note on pronouns\u003c/a>\u003c/aside>\n\u003cp>“A common question is, ‘Why are you doing that?' in a very accusatory tone,” she says.\u003c/p>\n\u003cp>Don't even get her started on eye contact. A social skills teacher once tried to show her how to make eye contact without making people uncomfortable.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Don’t avoid it, but don’t stare.\u003c/p>\n\u003cp>“What I would have to do is, \"Okay, eye contact. One, two, three, glance away, glance back. One, two, three, glance away,’” Valencia explains. “And at that point, I’m no longer listening, I am pretending to listen.”\u003c/p>\n\u003cp>A lot of people just walk away.\u003c/p>\n\u003cp>“It can be anxiety-provoking,” she says. “That anxiety comes from being excluded, being rejected, being ridiculed for things that are just part of naturally being me.”\u003c/p>\n\u003cp>Valencia likes hanging out with people. She’s into salsa dancing, acting, improv and Pokemon Go. But sometimes social situations can be so stressful that Valencia hangs back on the sidelines, or avoids them altogether. She never answers the phone.\u003c/p>\n\u003cp>“It creates a cycle of self-judgment,” she says, “and makes the anxiety worse.”\u003c/p>\n\u003cfigure id=\"attachment_266972\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/MDMA_image-e1477009038956.jpg\">\u003cimg class=\"wp-image-266972 size-large\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/MDMA_image-1020x791.jpg\" alt=\"MDMA_image\" width=\"640\" height=\"496\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Daniel Au Valencia participated in a pilot study examining the potential of MDMA as a treatment for social anxiety in autistic adults. \u003ccite>(April Dembosky/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Experimental Study\u003c/strong>\u003c/p>\n\u003cp>Then last year Valencia heard about an unusual experimental study. Unlike a lot of other studies, this one didn’t say anything about trying to “cure autism.” This one was exploring a treatment specifically for social anxiety in autistic adults.\u003c/p>\n\u003cp>“Anxiety, unlike autism, is actually a problem that you might want to get rid of,” Valencia says.\u003c/p>\n\u003cp>Many traditional therapies don’t work for autistic people, says Nick Walker, an autistic advocate and consultant on the new study, because they reinforce stigma around autism and are “designed to coerce autistic people into acting like they’re not autistic.”\u003c/p>\n\u003cp>He sees this new research as a uniquely “culturally appropriate” approach to addressing the “epidemic” of social anxiety in autistic adults – anxiety caused by a lifetime of repeated, traumatic social interactions.\u003c/p>\n\u003cp>The treatment is MDMA, known more commonly as Ecstacy or Molly. On the street, it is often cut with speed or other drugs, and is popular among ravers for lowering inhibitions, heightening physical sensations, and making people feel all lovey.\u003c/p>\n\u003cp>But researchers are finding that pure MDMA has potential to be a true medicine. Early studies backed by MAPS, the Multidisciplinary Association of Psychedelic Studies based in Santa Cruz, show it can ease or erase symptoms of post-traumatic stress disorder. In \u003ca href=\"http://www.maps.org/research-archive/publications/Oehen_2012_MDMA_PTSD_Swisstudy.pdf\">one study\u003c/a>, 83 percent of study participants treated with MDMA and psychotherapy were cured of their PTSD, compared to 25 percent who were cured from talk therapy alone.\u003c/p>\n\u003cp>“MDMA creates a sensation of feeling safe,” says psychologist \u003ca href=\"http://www.icpr2016.nl/speakers/alicia-danforth-phd/\">Alicia Danforth\u003c/a>, one of the researchers conducting the social anxiety study at UCLA’s Los Angeles Biomedical Research Institute, along with psychiatrist \u003ca href=\"http://www.harboruclapsych.com/charles-s-grob-m-d/\">Charles Grob\u003c/a>.\u003c/p>\n\u003caside class=\"pullquote alignright\">'I felt the changes in my body. My bodily needs were radically altered.'\u003ccite>Daniel Au Valencia, Study participant\u003c/cite>\u003c/aside>\n\u003cp>MDMA floods the brain with serotonin and dopamine, they say, and quiets the fear response from the amygdala, allowing people to confront past traumatic experiences without becoming overwhelmed. Or they can try new things without fear or inhibition getting in the way.\u003c/p>\n\u003cp>“It creates a practice environment to try different social skills out,” Danforth says. “MDMA can be a bit like training wheels for the psyche.”\u003c/p>\n\u003cp>Valencia is one of just 12 autistic adults participating in the pilot study. Given the small size, researchers won’t get statistically meaningful data on the efficacy of MDMA in treating social anxiety. Their focus is proving that this research can be done safely in this population, with the hopes that others will conduct larger-scale studies.\u003c/p>\n\u003cp>The treatment consists of two MDMA sessions, 10 a.m. to 6 p.m., six weeks apart. Danforth and Grob meet with each study participant several times before and after each session for psychotherapy and to measure their social anxiety levels.\u003c/p>\n\u003cp>Before the first MDMA session, they ask participants to set an intention. Danforth says they want them to think about how they hope to grow or change from the treatment.\u003c/p>\n\u003cp>“It can be something simple: ‘I want to be better at small talk, or I want to learn the skill of asking someone out on a date,’” Danforth says. “It can also be very large, ‘I’m working on forgiveness or unresolved grief or loss.’”\u003c/p>\n\u003cp>Valencia’s goal was to be more assertive.\u003c/p>\n\u003cp>“One of the things that makes anxiety go away is to be in control of the situation rather than waiting for things to happen,” she says.\u003c/p>\n\u003cp>\u003cstrong>The First Session\u003c/strong>\u003c/p>\n\u003cp>Valencia arrived at 10 a.m. for her first MDMA session at a bland office building on the UCLA campus. Researchers transformed the room to a kind of den that Danforth describes as “autism friendly” -- soft lighting, soothing colors, and a luxury leather recliner facing a wall-sized poster of a forest canopy with light streaming through the trees.\u003c/p>\n\u003cp>New-age flute music played over the computer speakers as Valencia swallowed the MDMA capsule. Within a half hour, she knew it was not a placebo.\u003c/p>\n\u003cp>“I felt the changes in my body,” Valencia describes. “My bodily needs were radically altered.”\u003c/p>\n\u003cp>She describes one moment that was particularly powerful, when researchers brought in a plate of grapes.\u003c/p>\n\u003cp>“I bit into half a grape,” Valencia says. “I felt the flavors, the texture, the nuance.”\u003c/p>\n\u003cp>This sparked a classic psychedelic epiphany.\u003c/p>\n\u003cp>“Wow, I can really enjoy every bit of life more, if I can do it mindfully,” she says.\u003c/p>\n\u003cp>Later in the session, she felt a rush of energy in her body and said, “I feel like dancing.”\u003c/p>\n\u003cp>Then Valencia did something that would normally take her eons to build up the courage to do.\u003c/p>\n\u003cp>She asked Danforth if she would care to salsa.\u003c/p>\n\u003cp>“I was thinking, my intention is to be more assertive,” Valencia says. “Well, one part of being assertive is ask for what you want.”\u003c/p>\n\u003cp>Danforth says in the context of the therapy and Valencia’s intention, this was completely appropriate. It was in keeping with Danforth’s previous research, where she collected qualitative reports from autistic adults who had taken MDMA recreationally.\u003c/p>\n\u003cp>“We call them the Five C’s,” she says. “People reported changes in their level of courage or confidence, communication, feeling connected, a sense of communion or belonging, and mental clarity.”\u003c/p>\n\u003cfigure id=\"attachment_266943\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/MDMA_1-e1477009669302.jpg\">\u003cimg class=\"size-large wp-image-266943\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/MDMA_1-1020x765.jpg\" alt='Valencia uses emotion cards to help her understand and articulate her feelings. There are about 60 in the deck, including a few \"make your own\" cards.' width=\"640\" height=\"480\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Valencia uses emotion cards to help her understand and articulate her feelings. There are about 60 in the deck, including a few \"make your own\" cards. \u003ccite>(April Dembosky/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Follow-Up\u003c/strong>\u003c/p>\n\u003cp>The day after the MDMA session, the researchers meet with each participant to talk about what happened. Then they call them every day for a week after that to check in.\u003c/p>\n\u003cp>“The treatment is just a day,” Danforth says. “It’s what you do with those insights and how you integrate it into your everyday life.”\u003c/p>\n\u003cp>After her first session, Valencia started using a deck of “emotion cards” each day to help her understand what she was feeling. Each card has a word – “peaceful,” “loving,” “uncomfortable,” “frustrated,” “receptive” -- with a corresponding illustration.\u003c/p>\n\u003cp>“I’ve learned about the importance of connecting with your emotions,” she says. “I have learned that you can experience a whole lot of different emotions at once.”\u003c/p>\n\u003cp>While that may seem innate for a lot of typically developing individuals, it’s novel for a lot of autistic people, Danforth says. MDMA is known for helping people get clarity about their feeling states, to find words to express them, she says. That, in turn, helps people articulate their needs so they can “shape the world to be more to their liking.”\u003c/p>\n\u003cp>That was one of Valencia’s big takeaways: “Knowing that I have a choice,” she says. “Anytime something is bothering me, I can do something about it.”\u003c/p>\n\u003cp>\u003cstrong>The Second Session\u003c/strong>\u003c/p>\n\u003cp>When it was time for Valencia’s second MDMA session, she felt her original goal of being more assertive was now not quite right. It felt like a concession to societal pressure to fit in. She needed to let go of that, she says, and release the pressure she was putting on herself to always be involved, to be better all the time, to be different.\u003c/p>\n\u003cp>“In session number two, there was a moment I was just sitting in a big comfy chair,” Valencia says. “Letting my hands do whatever my hands wanted to do, kind of floating around. It looks like nothing is happening.”\u003c/p>\n\u003cp>But in fact, Valencia says, her mind was racing with thoughts, one idea popping up after another.\u003c/p>\n\u003cp>“And I thought, ‘Oh, these are some good ideas. I should write them down,” she says. “And then I stopped myself. ‘Do I have to do this? I can just sit here. And enjoy them.’”\u003c/p>\n\u003cp>When she flipped through the emotion cards, she picked one where the illustration was a swirl of blackness. The word was “depressed,” but Valencia says she saw something else.\u003c/p>\n\u003cp>“Not having to do something in every moment, not having to \u003cem>feel \u003c/em>anything for just a couple hours,” she says. “That was such a relief.”\u003c/p>\n\u003cp>\u003cstrong>Reflections \u003c/strong>\u003c/p>\n\u003cp>Valencia completed the treatment last year. It’s impossible to draw a direct line between the treatment and how Valencia is doing right now, but she says she’s doing great. She’s got a steady full-time job, her own apartment, and she just got married. The study is still ongoing, so Valencia won’t know if her scores on the social anxiety tests improved until all participants finish the treatment and the researchers analyze the data.\u003c/p>\n\u003cp>But she says her biggest takeaway from the experiment is more about emotions than social anxiety.\u003c/p>\n\u003cp>She says she’s learned that there’s no such thing as good emotions or bad emotions.\u003c/p>\n\u003cp>“All emotions deserve to exist,” she says.\u003c/p>\n\u003cp>This underscores a process of transformation Valencia started a couple years before the MDMA treatment around her autistic identity. She started reading essays by Nick Walker, the autism advocate based in Berkeley. He rejects the notion that autism is a disease, the same way the gay community rejects the notion that homosexuality is a disease.\u003c/p>\n\u003cp>Walker says autistic brains are simply different. They’re part of the patchwork of neurodiversity in the human population.\u003c/p>\n\u003cp>“There’s the dominant belief in society that there's good brains and bad brains,” Valencia says. “And from a neurodiversity perspective, all those concepts are no longer valid.”\u003c/p>\n\u003cp>After the MDMA treatment, Valencia started to see emotions in the same way, along the same continuum of self-acceptance.\u003c/p>\n\u003cp>“Once you do away with that most basic of dichotomies, good versus bad, and just make it all sort of a jumbled mess of the same thing, then you can either hate yourself as a whole or you can accept and love yourself as a whole,” she says. “And I think, it’s not always as easy as making a decision, but it’s pretty obvious which one is preferable.”\u003ca id=\"note\">\u003c/a>\u003c/p>\n\u003cp>\u003cem>Editor's Note:\u003c/em>\u003c/p>\n\u003cp>\u003cem>After completing the full course of MDMA treatment and working on assertiveness, Valencia began asking friends and acquaintances to use the pronouns “they, them, their.” Valencia identifies as gender-vague.\u003c/em>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Using “they” or “them” to refer to an individual presents certain grammatical and syntactical challenges, and in light of this, Valencia asked KQED to use female pronouns instead.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/266305/ecstasy-party-drug-offers-hope-for-easing-social-anxiety-in-autistic-adults","authors":["3205"],"categories":["futureofyou_452","futureofyou_1062","futureofyou_1","futureofyou_73"],"tags":["futureofyou_555","futureofyou_1114","futureofyou_80","futureofyou_1113","futureofyou_1115"],"featImg":"futureofyou_266310","label":"source_futureofyou_266305"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. 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You can also visit the MindShift website for episodes and supplemental blog posts or tweet us \u003ca href=\"https://twitter.com/MindShiftKQED\">@MindShiftKQED\u003c/a> or visit us at \u003ca href=\"/mindshift\">MindShift.KQED.org\u003c/a>","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Mindshift-Podcast-Tile-703x703-1.jpg","imageAlt":"KQED MindShift: How We Will Learn","officialWebsiteLink":"/mindshift/","meta":{"site":"news","source":"kqed","order":"2"},"link":"/podcasts/mindshift","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/mindshift-podcast/id1078765985","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM1NzY0NjAwNDI5","npr":"https://www.npr.org/podcasts/464615685/mind-shift-podcast","stitcher":"https://www.stitcher.com/podcast/kqed/stories-teachers-share","spotify":"https://open.spotify.com/show/0MxSpNYZKNprFLCl7eEtyx"}},"morning-edition":{"id":"morning-edition","title":"Morning Edition","info":"\u003cem>Morning Edition\u003c/em> takes listeners around the country and the world with multi-faceted stories and commentaries every weekday. 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On Our Watch brings listeners into the rooms where officers are questioned and witnesses are interrogated to find out who this system is really protecting. 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