Joint Chinese-UK study shows Levels similar to the West
The first large-scale study of autism in China has revealed that around one in a hundred people in the country has an autism spectrum condition – the same figure as found in the West.
The research was carried out by an international team of researchers from the University of Cambridge, UK, and the China Disabled Persons’ Federation and Chinese University of Hong Kong. It is the result of an international partnership launched in 2013.
Autism spectrum conditions – which include autism and Asperger’s syndrome – are characterised by impairments in social interaction and communication, alongside the presence of unusually repetitive behaviour and narrow interests, difficulties adjusting to unexpected change, and sensory hyper-sensitivity.
Autism was first described in Western cultures, and only later recognised in Asian countries. Around one in 100 school age children in the UK is autistic, but autism prevalence in China has been reported to be lower than in the West. The reasons for this difference are that most studies in China have only included the special school population, overlooking the mainstream school population; and that most studies in China have not used validated and reliable screening and diagnostic methods.
“Understanding the prevalence of autism is important because of its relevance to planning services to support those living with the condition, as well as their families,” said Professor Carol Brayne from the Cambridge Institute of Public Health.
Professor Simon Baron-Cohen, Director of the Autism Research Centre in Cambridge (ARC) added: “We need to study autism outside Western populations, since most of the research to date has only been carried out in the West. This collaboration with colleagues in China is so valuable to help us understand what is universal and what is culture-specific in autism research.”
To address the gap in understanding autism in China, the researchers tested the total autism prevalence in mainstream and special schools in Jilin City, and mainstream school autism prevalence in Jiamusi and Shenzhen cities. They screened children aged 6 to 10?years old in the three cities using the Childhood Autism Screening Test (or CAST), a 37-item questionnaire, completed by parents, and developed and validated by the Cambridge team. The questionnaire gives a score of 0 to 31, and children scoring 15 or above were then given a clinical assessment. The results are published in the journal Molecular Autism.
In Jilin City, from a total population of 7,258, the team identified 77 cases of autism, equating to a prevalence of 108 per 10,000, very similar to that found in the West.
In Shenzhen and Jiamusi cities, only data for children in mainstream education was available; in Shenzhen City, 42 out of every 10,000 children in mainstream education had autism, and in Jiamusi City this figure was 19 per 10,000. In all three cities, the researchers identified new cases of autism in mainstream schools, confirming that there is under-diagnosis of autism in China.
“Contrary to previous studies, we have shown that the prevalence of autism spectrum conditions in China is in line with that found in the West,” said Dr Sophia Xiang Sun, who conducted this study as part of her PhD at Cambridge University and who is now based in the Star Kay Bridge Research Centre for Children with Autism in Xiamen, China.
Professor Patrick Leung, from the Chinese University of Hong Kong, said: “Previous research into the autism spectrum in China has mainly focused on the most severe subtype, childhood autism. We have been able to use a standardised screening methodology, allowing us to compare the results with Western countries to show that autism occurs broadly at the same rate, irrespective of culture.”
Dr Carrie Allison, from the Cambridge Autism Research Centre, commented: “Completing this study with colleagues in China has been nothing short of remarkable. It has involved translating Western autism screening instruments into Chinese, training Chinese clinicians in autism diagnosis, and working with national Chinese agencies, screening in three Chinese cities.”
Professor Fiona Matthews, the statistician on the Cambridge team and now based in Newcastle University, noted: “A strength of this study is the near universal response rate that is possible in China, which we rarely achieve in the West, making the epidemiology far more representative.”
The research was funded by the Autism Research Trust, the NIHR CLAHRC for East of England, the Chinese University of Hong Kong (CUHK), and the Medical Research Council UK.
Texas strategy reduces prescriptions without compromising care, Rutgers study finds
Rutgers researchers have found that a Texas strategy to reduce anti-psychotic medication for children can serve as a model for other state Medicaid programs.
The study was published in the Journal of the American Academy of Child & Adolescent Psychiatry.
“Youth in the United States foster care system are about five times more likely to take antipsychotic medications, a class of medications to manage their mental and behavioral health, than children in the general public,” said Thomas Mackie, assistant professor at Rutgers School of Public Health. In response, over 31 state Medicaid programs nationally are experimenting with different oversight strategies to ensure safe and judicious use of antipsychotic medications. These Medicaid programs are challenged to address these concerns while also ensuring access to antipsychotic medications in cases where these medications are clinically optimal, especially for those youth with psychosis, autism and other U.S. Food and Drug Administration–approved clinical indications.
An antipsychotic medication oversight strategy implemented in Texas included four elements: a mental health screening administered within 72 hours of the child being removed from the original caregiver; a health passport drawing on claims-based data; a psychiatric consultation line for child welfare staff, caregivers and judges; and a retrospective review of whether prescribed psychotropic medications met state best practice parameters after the antipsychotic medication was prescribed and dispensed.
The study, sought to examine whether the Texas program was effective in reducing the number of youth in foster care prescribed antipsychotic medications off-label to manage symptoms of conditions such as conduct disorders or attention hyperactivity disorders, while not decreasing use for disorders with FDA indications, such as bipolar disorder or autism spectrum disorders.
After the strategy started, the Rutgers researchers found the program resulted in roughly a 5 percent to 8 percent reduction in antipsychotic use for youth treated off-label for conditions like conduct or attention hyperactivity disorders, whereas no significant changes were found for youth treated for FDA-indicated conditions.
These findings show that the Texas program effectively reduced use of antipsychotic medications for off-label conditions where clinical concerns are greatest while not reducing antipsychotic medications for FDA-indicated conditions where stronger evidence exists for antipsychotic use among youth.
“Although the Texas model enrolled only youths in foster care, similar innovations are increasingly being extended to the general population of Medicaid-insured youth,” Mackie said. “This study provides important new evidence suggesting that states continue to incorporate or renew the inclusion of these additional behavioral health services into Medicaid-managed care arrangements.”
Breakthrough research demonstrating that children with autism as young as 18 months can vastly improve their language, cognition and social skills with an early intervention developed by UC Davis Professor Sally Rogers has been replicated in a major new study.
Rogers, a professor of Psychiatry and Behavioral Sciences at the MIND Institute, began work on a novel developmental approach to autism in Denver in 1981, and in partnership with her colleague and co-author Geraldine Dawson developed an approach to improving long-term outcomes for very young children. The Early Start Denver Model has since become a method used throughout the U.S. and around the world.
But until now ESDM had not been tested in the most rigorous fashion − a multi-site randomized trial, comparing the approach with community-based autism interventions. The study, which appears today in Journal of the American Academy of Child and Adolescent Psychiatry, began in 2007 at three university sites around the country. The new research replicates an ESDM study published in 2010. Rogers emphasized that replication studies are rare and costly but critical to validate novel scientific findings.
The new study found that children receiving intensive ESDM in their homes for an average of 15 hours per week made significantly greater language gains than did children in the community interventions, and this was true for both children with more severe delays and those with less.
In addition to validating the efficacy of ESDM for language development, the study also found that children receiving services in the community settings made large gains in several areas.
“The idea that little children with autism who are getting good treatment can make this much IQ and language gain means we should expect this from quality early-intervention experiences,” Rogers said. “These findings should raise families’ hopes a whole lot.”
Pioneering autism treatment was a new idea
What distinguishes ESDM from the more traditional, behavioral interventions used with children with autism is that it combines developmental and behavioral approaches and is carried out within in everyday routines. ESDM is built on moment-to-moment interactions that young children typically have with other people, especially their parents, and uses children’s interests and favorite activities to assure that social interaction is interesting and fun.
“Unlike other approaches popular at the time that the Denver Model began, we used a typical preschool physical environment and focused on the learning opportunities that existed in social interactions between children and adults to accelerate children’s development,” Rogers said. “This was a new idea at the time.”
In 2012, TIME magazine named ESDM one of the top 10 medical breakthroughs because their work demonstrated that brain function among young children with autism can normalize with effective early intervention in profound, enduring ways.
For the current study 118 children with autism, ages 14 months to two years, were enrolled and randomly assigned to either ESDM or community interventions for 27 months. Children assigned to ESDM intervention received three months of weekly parent coaching followed by 24 months of one-on-one treatment about 15 hours per week in homes or daycare settings from supervised therapy assistants. Parents received coaching four hours monthly from a certified ESDM therapist. In the community setting, hours of treatment varied by site.
What researchers found was that at two of the three sites, children receiving ESDM had significantly more language improvement than the children in the community interventions, and there was no significant difference in language gain at the third site between the two modalities. When results from all three sites were pooled, there was a significant advantage for the children in the ESDM group overall.
“Language is the bridge to learning,” Rogers said. “Language is the door that opens up social communication and education and interactions with people in your community. It’s how you share with people. It’s a main vehicle for social interaction once you pass infancy.”
Autism treatment in the community greatly improved over time
The study also found that in terms of cognition and social skills, both the ESDM and community treatment groups made significant gains. Fortunately, Rogers said, laws requiring insurance coverage for early autism intervention and new knowledge about effective treatment have greatly improved community options for families seeking help for young children diagnosed with autism.
Rogers said families with a child diagnosed with autism should take some comfort knowing that the early treatments now widely available do make a difference.
“It says the autism scores at the time of diagnosis are just a starting point,” she said. “It says that the developmental paths and learning capacity of young children with autism are more plastic than we knew, and there are many ways to get learning opportunities to them.”
In addition to Rogers, UC Davis authors on the study were Marie Rocha, Laurie Vismara and Meagan Talbott. Other co-authors on the study included: Annette Estes and Jessica Greenson of the University of Washington; Catherine Lord and Jamie Winter of Weill Cornell Medicine, Cornell University; Costanza Colombi of University of Michigan; Geraldine Dawson of Duke University, and Gerhard Hellemann of UCLA.
This study was supported by individual Autism Speaks grants to Annette Estes and to Sally Rogers and by NIMH/NICHD award number R01 081757 as part of the Autism Centers of Excellence (ACE) Treatment Network, clinicaltrials.gov identifier NCT 00698997.
In recent days there has been significant coverage surrounding the Boca Raton native becoming the first openly autistic person to be admitted to the Florida bar. This accomplishment being widely accepted is a huge stride for those diagnosed with autism and autism professionals working hard to create inclusive workplaces.
To help others understand why inclusivity and supporting those with disorders is so important, I’d like to offer Arianna Esposito, Associate Director of Adult & Transition Programs at the Kinney Center for Autism Education and Support at Saint Joseph’s University. She is able to offer tips to help employers create an inclusive workplace. These tips are not only helpful for individuals with autism, but can benefit all employees. Please see a sampling of her advice below:
- Sensory-Friendly Environment
Fluorescent lights can be extremely bothersome for someone with sensory challenges. Offering dimmer lighting options or access to natural light are good alternatives. Odorless office supplies, cleaning supplies and other products are recommended to have in a supply closet or open areas. Designated, private quiet rooms for employees to take a call in or do work are a great option.
- Open communication
Providing clear and specific feedback is important for an inclusive structure. Try putting a positive spin on code of conduct by turning “do not” rules into “can do” rules.
Being flexible with needs such as accepting requests to wear specific clothing items and seating locations (not near crowded areas) will help individuals navigate the social world.
Ten Signs of Possible Autism-Related Delays in 6- to 12-Month-Old Children
Though autism is often not diagnosed until the age of three, some children begin to show signs of developmental delay before they turn a year old. While not all infants and toddlers with delays will develop autism spectrum disorders (ASD), experts point to early detection of these signs as key to capitalizing on early diagnosis and intervention, which is believed to improve developmental outcomes.
According to Dr. Rebecca Landa, director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore, Md., parents need to be empowered to identify the warning signs of ASD and other communication delays. “We want to encourage parents to become good observers of their children’s development so that they can see the earliest indicators of delays in a baby’s communication, social and motor skills,” says Dr. Landa, who also cautions that some children who develop ASD don’t show signs until after the second birthday or regress after appearing to develop typically.
For the past decade, Dr. Landa has followed infant siblings of children with autism to identify red flags of the disorder in their earliest form. Her research has shown that diagnosis is possible in some children as young as 14 months and sparked the development of early intervention models that have been shown to improve outcomes for toddlers showing signs of ASD as young as one and two years old. Dr. Landa recommends that as parents play with their infant (6 – 12 months), they look for the following signs that have been linked to later diagnosis of ASD or other communication disorders: 1. Rarely smiles when approached by caregivers2. Rarely tries to imitate sounds and movements others make, such as smiling and laughing, during simple social exchanges3. Delayed or infrequent babbling4. Does not respond to his or her name with increasing consistency from 6 – 12 months 5. Does not gesture to communicate by 10 months6. Poor eye contact7. Seeks your attention infrequently8. Repeatedly stiffens arms, hands, legs or displays unusual body movements such as rotating the hands on the wrists, uncommon postures or other repetitive behaviors9. Does not reach up toward you when you reach to pick him or her up10. Delays in motor development, including delayed rolling over, pushing up and crawling
“If parents suspect something is wrong with their child’s development, or that their child is losing skills, they should talk to their pediatrician or another developmental expert,” says Dr. Landa. “Don’t adopt a ‘wait and see’ perspective. We want to identify delays early in development so that intervention can begin when children’s brains are more malleable and still developing their circuitry.”
About the Kennedy Krieger Institute Internationally recognized for improving the lives of children and adolescents with disorders and injuries of the brain and spinal cord, the Kennedy Krieger Institute in Baltimore, MD serves more than 16,000 individuals each year through inpatient and outpatient clinics, home and community services and school-based programs. Kennedy Krieger provides a wide range of services for children with developmental concerns mild to severe, and is home to a team of investigators who are contributing to the understanding of how disorders develop while pioneering new interventions and earlier diagnosis. For more information on Kennedy Krieger Institute, visit: www.kennedykrieger.org.
Photo by Food Photographer | Jennifer Pallian
When people become stressed, their bodies can respond by sweating. Now, researchers at the University of Missouri are monitoring how much adolescents severely affected by autism sweat in order to better understand when behavioral issues, such as aggression, are likely to occur.
Bradley Ferguson analyzed the stress levels of eight adolescents who are severely affected by autism spectrum disorder at The Center for Discovery, a residential facility in New York that provides advanced care and research for individuals with complex conditions. Using wrist and ankle monitors, Ferguson found that there was a rise in the body’s electrodermal activity – which results from increased levels of sweat – 60% of the time before an individual showed behavioral issues.
“A spike in electrodermal activity is telling us that the individual’s body is reacting physiologically to something that is stressful, which could be their internal state, something in the environment, or a combination of the two,” said Ferguson, assistant research professor in the departments of health psychology, radiology and the Thompson Center for Autism and Neurodevelopmental Disorders. “If parents or caregivers are notified ahead of time that their child’s stress levels are rising, they might have a chance to intervene and de-escalate the situation before problem behaviors occur.”
Ferguson explained that possible intervention methods could include removing the child from the environment or activity that is causing the stress, as well as providing access to an item that the child enjoys interacting with in an effort to calm them.
“Individuals who are severely affected by autism spectrum disorder are often unable to verbally communicate their discomfort when they become stressed,” Ferguson said. “However, their body still responds to stressors just like anyone else. Therefore, being alerted of increases in electrodermal activity can allow parents and caregivers to intervene prior to engagement in problem behavior with the goal of ensuring the health and safety of those involved.”
Ferguson collaborated on the study with David Beversdorf, a professor of radiology, neurology and psychology in the MU College of Arts and Science as well as principal investigator of the Cognitive Neuroscience Laboratory in the MU School of Medicine. Ferguson also collaborated with Theresa Hamlin, Johanna Lantz, and Tania Villavicencio at The Center for Discovery, and John Coles at Calspan-University of Buffalo Research Center and The State University of New York at Buffalo.
“Important work is being done to try to identify predictors for when a person with autism is at greatest risk of having a behavioral episode,” Beversdorf said. “This research highlights the individual variability in this response that must be considered, and may also have implications for individualized treatment approaches moving forward.”
“Examining the association between electrodermal activity and problem behavior in severe autism spectrum disorder: A feasibility study,” was published in Frontiers in Psychiatry.
The study was funded by the New York State Center of Excellence, New York State Department of Health and Office for People with Developmental Disabilities, as well as private monies donated to The Center for Discovery. The content is solely the responsibilities of the authors and does not necessarily represent the official views of the funding agencies.
The Department of Health Psychology is in the MU School of Health Professions, and the Department of Radiology is in the MU School of Medicine.
A team of NIH-funded researchers at Stanford University Medical School has found that children with autism improved measurably on a test of socialization and learning when their therapy included an at-home intervention with Google Glass. Google Glass is a headset worn like eyeglasses that provides augmented reality on a miniature screen, with sound. The smart system of eye wear and mobile-phone-based games helped the children with autism understand emotions conveyed in facial expressions.
Autism is a complex neurological and developmental spectrum disorder that affects how children interact with others, communicate, and learn. Many children affected by autism spectrum disorder (ASD) are unable to discern facial expressions, so miss out on important cues that aid in learning and socialization.
The Stanford team, led by Dennis P. Wall, Ph.D., associate professor of Pediatrics, Psychiatry and Biomedical Data Sciences, used Google Glass’s built-in camera along with software customized to run on a smart phone as an intervention that care givers used with their children at home to supplement clinic-based therapy. The study was published March 25, 2019, in JAMA Pediatrics.
“Technology can be a terrific asset to the therapy process, for both physical and neurodevelopmental gains,” said Tiffani Lash, Ph.D., director of the NIBIB programs in Connected Health (mHealth and Telehealth), and Point-of-Care Technologies. “This is a heartwarming achievement and a promising example using a bioengineering approach. The innovative software and hardware solution coupled with the therapeutic component meets a dire need for many children and their parents.”
Google Glass is lens-less, non-invasive, and peripheral—sitting off to the right side of view for the child. “The system acts as a true augmentation to their reality, keeping them in their natural social world, as opposed to taking them out of it,” Wall said. “In contrast to virtual or mixed reality, augmented reality is potentially a powerful vehicle through which we can teach children social skills to rescue some of these deficits early in their development.”
A camera in the device captures the facial expression of family members in the glasses’ field of view, reinforcing what the child sees by providing an image and audio prompt. It detects up to eight emotions: happy, sad, angry, scared, surprised, disgusted, “meh,” and neutral. The glasses are wirelessly connected to a smartphone device that may be operated in three different play modes. There is ‘find the smile’ game, where the child is prompted to say something that prompts an expression in the family member’s face; the ‘guess the emotion’ game, where the family member asks the child to guess the emotion from the family member’s face; and free play, an unstructured mode of identifying facial expressions.
The device also records a video that parents can observe at a later time to monitor the progress that their child makes with the activities. “Our hope was that the video playback would be a good source of reinforcement learning with the children,” Wall said. “It provides the opportunity for the learner to focus in on certain human emotions that they may or may not be getting right, so they might become more adept at detecting those emotions in real time.”
The researchers recruited 71 children between the ages of six and 12 who all had been enrolled in a program of applied behavioral analysis therapy—the standard care for most children with ASD. Experts recommend 20 hours per week of the standard therapy, in which the child interacts with a therapist who leads learning activities to improve social, motor, and verbal behaviors, as well as reasoning skills through observation and positive reinforcement. The authors cite the current cost for this standard therapy to be between $40,000 and $60,000 per year, noting that parents can often wait up to 18 months for their child to gain access to the therapy.
Experts suggest that it is important for children with ASD to receive a diagnosis early—which can be assessed by the age of two—so that children can begin treatment as early as possible. According to the authors, learning aids such as the type tested in the study could begin to address this difficult challenge of accessing therapy more immediately, outside the clinic.
Of the 71 enrolled in the study, 40 children also received the augmented reality device to play the programmed games or freely play during 20-minutes sessions, four times per week. After six weeks, the team assessed all 71 children on a standard socialization scale.
The researchers found that children receiving the smart-glasses intervention along with standard therapy scored significantly better in the post-study assessment than those in the control group. Children who used the smart glasses improved 4.58 points on the standard scale above those who did not use the Google Glass intervention. Authors unrelated to the work by Wall and colleagues recently published in Autism Research that changes of 2 to 3.75 points on the scale represent a clinically important difference.
“This is based on a statistically rigorous approach to the analysis of the data,” Wall said. “We should be excited about the result. While the overall effect is modest, the positive change seen in the treated children is significant and points to a new direction that could help more children get the care they need, when they need it.”
Wall noted that the device represents a short-term learning aid and predicts that in the not-too-distant-future there will be a wider array of available augmented reality wearables. “After a period of time, they take the glasses off and they grow on their own into more complex social scenarios.”
Though a playful intervention, families in the treatment group missed a portion of the prescribed hours in which to practice with Google Glass, and most preferred the structured games over the unstructured free-play option. But the activity was positively received to the point that children who participated in the study created a new name for the tool, calling it Superpower Glass, a moniker the authors adopted in writing their report on the study. The researchers have begun to plan for a larger, follow up study.
For more about autism spectrum disorder, go to: https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/in…
The research was conducted with support from NIBIB (EB025025) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (HD091500), both at NIH.
The study: Effect of Wearable Digital Intervention for Improving Socialization in Children With Autism Spectrum Disorder: A Randomized Clinical Trial. Voss C, Schwartz J, Daniels J, Kline A, Haber N, Washington P, Tariq Q, Robinson TN, Desai M, Phillips JM, Feinstein C, Winograd T, Wall DP. JAMA Pediatrics. 2019 Mar 25
Researchers urge continued screening for all toddlers, while recommending changes to M-CHAT screening method to improve accuracy, address disparities
Newswise — Philadelphia, September 27, 2019 –
In the first large, real-world study of universal screening for autism spectrum disorder (ASD) in toddlers, researchers at Children’s Hospital of Philadelphia (CHOP) have found that the most widely used and researched screening tool is less accurate than shown in previous studies conducted in research laboratory settings. The new study also revealed significant disparities in detecting early autism symptoms in minority, urban and low-income children. The findings were published online today in the journal Pediatrics.
The American Academy of Pediatrics (AAP) recommends screening all toddlers for ASD at their 18- and 24-month primary care check-ups using the Modified Checklist for Autism in Toddlers with Follow-Up (M-CHAT/F), a two-stage parent survey to determine whether a child may have autism, with the follow-up designed to eliminate false positives. However, most studies to evaluate the accuracy of the M-CHAT/F have been conducted in research settings rather than in real-world clinical settings. Therefore, very little was known about screening in the recommended primary care setting, nor about longer-term outcomes for children who screened negative on the M-CHAT/F. The CHOP study is the first to look at outcomes of truly universal screening in a real-world primary care setting.
“As part of a large pediatric network implementing universal screening, we found ourselves in a unique position to find answers to critical questions about the accuracy of the M-CHAT, and to determine how many children are missed by early, universal screening,” said lead author Whitney Guthrie, PhD, a clinical psychologist specializing in early diagnosis at CHOP’s Center for Autism Research. “Early intervention has been shown to improve outcomes, potentially into adulthood. We know that early and accurate screening and diagnosis is the crucial first step in helping children access those effective, autism-specific therapies.”
The CHOP research team studied the electronic health records (EHR) of 25,999 patients screened in primary care using the M-CHAT/F between the ages of 16 and 26 months, and systematically followed these children until 4 through 8 years of age using the EHR. Ninety-one percent of these children were screened using the M-CHAT/F, meaning that nearly universal screening of all children in primary care was achieved.
The study showed that the M-CHAT/F detected only about 40% of children who went on to be diagnosed with ASD. However, children who screened positive were diagnosed seven months earlier than those who screened negative, suggesting that early screening may facilitate early intervention. Overall, 2.2% of children in the study were ultimately diagnosed with ASD, which is consistent with the Centers for Disease Control and Prevention (CDC) estimates nationally.
“Although our findings reveal significant shortcomings in current screening tools, we want to be clear that we are not recommending that pediatricians stop universal screening,” said Guthrie. “Instead, clinicians should continue to screen using the M-CHAT/F, while being aware that this screening tool does miss some children with ASD. Any clinical or parental concerns should be taken seriously, and warrant continued surveillance even if a child screens negative on the M-CHAT/F. And of course, a screen positive on the M-CHAT/F warrants referral so that children with ASD can be diagnosed and receive early intervention.
“Pediatricians should also be aware of disparities in screening practices and results in children of color and from low-income backgrounds.”
The CHOP study found that the 9% of children who did not receive screening at 18 or 24 months were disproportionately from racial minority groups; from non-English speaking households; and from households with lower median income and who receive Medicaid. When screening was administered, these same children were more likely to receive a false positive result. The M-CHAT was also less accurate in girls than in boys.
“Persistent racial and economic disparities in autism screening and diagnosis are a cause for great concern, and are consistent with previous research showing that black and Hispanic children tend to be diagnosed years later than white children,” said co-author Kate Wallis, MD, MPH, a developmental pediatrician and researcher at CHOP’s PolicyLab who is also studying disparities in referrals for autism services. “This study revealed important limitations and provides us with new knowledge that we can use to make critical improvements to autism screening tools and screening processes, so pediatricians can properly detect and support more children with autism and reduce disparities in diagnosis and care.”
Guthrie et al, “Accuracy of Autism Screening in a Large Pediatric Network.” Pediatrics, online 27 September 2019. DOI: 10.1542/peds.2019-0925.
About Children’s Hospital of Philadelphia: Children’s Hospital of Philadelphia was founded in 1855 as the nation’s first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals, and pioneering major research initiatives, Children’s Hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program is among the largest in the country. In addition, its unique family-centered care and public service programs have brought the 564-bed hospital recognition as a leading advocate for children and adolescents. For more information, visit http://www.chop.edu
WASHINGTON, Sept. 19, 2019 /PRNewswire/ —
Autism Speaks applauds the final passage of the Autism Collaboration, Accountability, Research, Education and Support Act of 2019 (Autism CARES Act of 2019) (H.R.1058). The bill now goes to the President’s desk for his signature. Autism CARES is the foundation of the federal government’s efforts around autism, serving as the primary source of federal funding for autism research, services, training and monitoring.
The bipartisan, bicameral legislation received broad support with 173 house members and 41 senators having signed on as co-sponsors of the legislation. Autism Speaks is grateful to have worked hand-in-hand with the measure’s congressional champions and advocates across the country in order to ensure support for the life-enhancing research and high-quality services authorized under the Autism CARES Act.
“Autism Speaks, alongside the millions of people with autism and their families, celebrates the passage of the Autism CARES Act of 2019,” said Autism Speaks President and CEO Angela Geiger. “Thanks to the leadership of Senator Bob Menendez, Senator Michael Enzi, Congressman Chris Smith and Congressman Mike Doyle, this legislation ensures sustained funding to better support people with autism across the spectrum and at every stage of life.”
The CDC estimates that 1 in 59 U.S. children have autism, according to surveillance and prevalence studies authorized by Autism CARES. A recent study by Autism Speaks researchers also found that children with autism have nearly four times higher odds of having unmet health care needs compared to children without disabilities. “We know autism is a lifelong condition and these unmet needs can and often do continue into adulthood,” said Autism Speaks Senior Vice President of Advocacy Stuart Spielman. “The Autism CARES Act of 2019 not only renews federal support for existing autism research and programs but also expands these activities, placing an increased emphasis on reducing health disparities and improving services throughout the life span.”
Under the authority of the Autism CARES Act of 2014 and predecessor legislation, over $3.1 billion has been dedicated for autism to the National Institute of Health (NIH), the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA) since 2006. The Autism CARES Act of 2019 authorizes more than $1.8 billion in funding over the next five years. This funding primarily supports autism research grants awarded by NIH which advance the scientific understanding of autism, expand efforts to develop treatments for medical conditions often associated with autism and address the needs of people affected by it. The NIH Autism Centers of Excellence also fosters collaboration within and among research centers, increasing the power and efficiency of their efforts.
The Autism CARES Act of 2019 also reauthorizes and supports numerous programs across the country focused on ensuring high-quality services for people with autism. Through 52 Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) programs and 12 Developmental Behavioral Pediatric Training Programs, the legislation has and will continue to enhance education, early detection and intervention activities at HRSA through the training of future leaders and healthcare professionals. Likewise, collaborative programs such as the Autism Intervention Research Network on Physical Health (AIR-P) will continue to help translate research into improved care and tangible resources for families and clinicians.
Under Autism CARES, the Interagency Autism Coordinating Committee (IACC) is empowered to advise on federal autism activities, and tasks the federal government with surveying and reporting to Congress on the current landscape of autism services. The 2014 legislation resulted in a report to Congress on young adults with autism and the challenges related to transitioning from school-based services to those available during adulthood. The 2019 legislation mandates another report, this time focused on the health and well-being of individuals with autism spectrum disorder, emphasizing their needs throughout the life span.
Autism Speaks looks forward to working with Congress and its community partners to deliver on the promise of Autism CARES through renewed appropriations for these programs.
SOURCE Autism Speaks