Tag: Children with autism

Levels of autism in China

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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.

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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.

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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.

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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.”

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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.”

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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.

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Early Intervention in Autism Improves Language, IQ and Social Skills

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Credit: UC Davis Health
Sally Rogers, PhD works with a child.

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.

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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.

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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.”

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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.

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“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.

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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.”

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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.”

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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.

“Could My Child Have Autism?”

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Ten Signs of Possible Autism-Related Delays in 6- to 12-Month-Old Children

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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.

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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.

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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

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“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.

The 69 genes that increase the risk for autism

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UCLA-led team compares DNA of children with the disorder to that of their siblings and parents

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A UCLA-led research team has identified dozens of genes, including 16 new genes, that increase the risk of autism spectrum disorder. The findings, published in the journal Cell, were based on a study of families with at least two children with autism.

Researchers from UCLA, Stanford University and three other institutions used a technique called whole genome sequencing to map the DNA of 2,300 people from nearly 500 families. They found 69 genes that increase the risk for autism spectrum disorder; 16 of those genes were not previously suspected to be associated with a risk for autism.

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Researchers also identified several hundred genes they suspect may increase the risk of autism based on their proximity to genes previously identified to carry an increased risk.  The study analyses further revealed several new biological pathways not previously identified in studies of autism.

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The findings shed light on how genetic variants or mutations — the differences that make each person’s genome unique — are passed from parents to children affected with autism, said the study’s co-lead author Elizabeth Ruzzo, a UCLA postdoctoral scholar. Former UCLA postdoctoral scholar Laura Pérez-Cano is the study’s other co-lead author.

“When we look at parents of autistic children and compare them to individuals without autism, we find that those parents carry significantly more, rare and highly damaging gene variants,” Ruzzo said. “Interestingly, these variants are frequently passed from the parents to all of the affected children but none of the unaffected children, which tells us that they are significantly increasing the risk of autism.”

Of the children in the study, 960 have autism and 217 children do not. That enabled researchers to analyze the genetic differences between children with and without autism across different families.

“Studying families with multiple children affected with autism increased our ability to detect inherited mutations in autism spectrum disorder,” said Dr. Daniel Geschwind, senior, corresponding author of the study and the Gordon and Virginia MacDonald Distinguished Professor of Human Genetics, Neurology and Psychiatry at the David Geffen School of Medicine of UCLA.

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“We show a substantial difference between the types of mutations that occur in different types of families, such as those that have more than one affected child versus those having only one child with ASD,” said Geschwind, who also was the study’s co-principal investigator and director of the UCLA Center for Autism Research and Treatment and director of the Institute of Precision Health at UCLA.

The research also found that the 16 genes newly determined to be associated with an increased risk for autism form a network with previously identified ASD risk genes. The way they interact with one another further heightens the risk, said the study’s co-senior author and co-principal investigator Dennis Wall, a Stanford University School of Medicine associate professor of pediatrics and of biomedical data science.

“They associate with each other more tightly than we’d expect by chance,” he said. “These genes are talking to each other, and those interactions appear to be an important link to autism spectrum disorder.”

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The nearly 600 genes researchers suspect as carrying an increased risk of autism were identified through “guilt by association,” or through their interactions with other genes that already have been shown to carry an increased autism risk, Ruzzo said.

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“And although not all of those genes will be found to increase the risk for autism, our analysis indicates that future studies will provide support for many of these genes,” she said.

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The families studied are part of the Autism Genetic Resource Exchange (AGRE), which was originally developed nearly two decades ago by researchers and the National Institutes of Health in collaboration with Cure Autism Now, which is now a program of Autism Speaks.

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Autism is a spectrum of neurological disorders characterized by difficulties with communication and social interaction. Geschwind has been working to identify the genetic causes and biological mechanisms of the disorder for more than a decade, and led the original development of the AGRE resource that was used in this study in the late 1990s. In 2018, he and colleagues at UCLA received their second, five-year grant from the NIH to expand autism research by studying genetic causes of autism in African American families.

Bullying children with autism

Photo by Quin Stevenson

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BINGHAMTON, NY – Children with autism spectrum disorder (ASD) are more likely to experience bullying than children without ASD and this bullying gets worse with age, according to new research from Binghamton University, State University of New York.

Hannah Morton, a graduate student in the clinical psychology PhD program at Binghamton University, aimed to conceptualize bullying in children with ASD in order to specifically identify different bullying and behavior types. Her research also emphasizes the need to establish better definitions of bullying behaviors.

“This research is important because it contributes to our understanding of how bullying is nuanced,” said Morton. “This variability means it is crucial to establish a definition for bullying and have standard assessments to know when and what types of bullying are occurring.”

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Morton, along with Binghamton psychologists Jennifer Gillis, Richard Mattson and Raymond Romanczyk, focused this study on teachers and parents of children with ASD, and community members without an ASD child. Participants took a survey containing 80 scenarios of interactions between two school-aged children. The scenarios varied from children ages four to fifteen. Sixty-four of these scenarios contained a type of bullying behavior (i.e. physical, verbal, interpersonal and cyber). The participants were randomly presented with 16 scenarios, and were asked to rate the severity of the interaction between the two children, as well as indicate which types of bullying were present.

Results showed that a child’s increased age predicted higher bullying severity ratings. The findings also showed that bullying among older children with ASD is viewed as especially problematic by their parents, and that perceived bullying severity differed according to the type of bullying behavior (i.e., physical, verbal, interpersonal, and cyber). 

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“This paper emphasizes that bullying is a really broad construct,” said Morton. “What any two people might be referring to when they use the term ‘bullying’—regardless if they are parents, teachers, researchers, etc.— likely differs, and perhaps in subtle ways.”

Morton plans to further her research on this topic by focusing specifically on the bullying behaviors that children with ASD experience compared to children without ASD.

This research was conducted through Binghamton University’s Institute for Child Development, which offers early intervention services, speech services and more to children and families in the Binghamton region. 

The paper, “Conceptualizing bullying in children with autism spectrum disorder: Using a mixed model to differentiate behavior types and identify predictors,” was published in Autism.