Researchers have long known the amygdala is significantly larger in school-age children diagnosed with autism, but it was unknown precisely when that enlargement occurs. Now, for the first time, researchers from the Infant Brain Imaging Study (IBIS) Network, which includes the 91Ě˝»¨, used magnetic resonance imaging (MRI) to demonstrate that the amygdala grows too rapidly in infancy. Overgrowth begins between 6 and 12 months of age, before the characteristics of autism fully emerge, potentially enabling the earliest identification of this condition.

The , published March 25 in the American Journal of Psychiatry, is the first to document amygdala overgrowth before autism appears clinically. The research was conducted through the IBIS Network, a consortium of 10 universities in the United States and Canada.

The study also showed that increased growth of the amygdala in infants who were later diagnosed with autism differed markedly from brain-growth patterns in babies with another neurodevelopmental disorder, fragile X syndrome, where no differences in amygdala growth were observed.

The research found that infants with fragile X syndrome already exhibit cognitive delays at 6 months of age. Infants who will later be diagnosed with autism do not show any deficits in cognitive ability at 6 months but have a gradual decline in cognitive ability between 6 and 24 months, the age when they were diagnosed with Autism Spectrum Disorder in this study.

“We also found that the rate of amygdala overgrowth in the first year is linked to the child’s social deficits at age two,” said first author , assistant professor of psychiatry and neuroscience at the University of North Carolina Chapel Hill and faculty of the Carolina Institute for Developmental Disabilities. “The faster the amygdala grew in infancy, the more social difficulties the child showed when diagnosed with autism a year later.”

by the IBIS team and others  revealed that even though the social deficits that are a hallmark of autism are not present at 6 months of age, infants who go on to develop autism have altered attention to visual stimuli in their surroundings in the first year of life. The authors hypothesize that these early alterations with processing visual and sensory information may place increased stress on the amygdala, leading to its overgrowth.

“We are getting closer to understanding why autism occurs by learning more about brain growth alterations early during development, in this case how amygdala growth may be influenced by early sensory processing difficulties and, conversely, how amygdala growth alterations may influence a baby’s interaction with their environment,” said , professor of radiology in the 91Ě˝»¨School of Medicine and an adjunct professor of bioengineering.

As part of the IBIS Network, the 91Ě˝»¨has been involved in several studies over the years. In 2019, the multicenter research team received a five-year, $9.5 million grant from the National Institute of Mental Health to continue their efforts to determine whether brain imaging can help detect infants who are likely to go on to develop autism spectrum disorder.

The 91Ě˝»¨Autism Center established an infant clinic in 2017, which provides evaluations for infants and toddlers and support for caregivers. Just as with older children with autism, psychologists and behavior analysts help create treatment plans with clinic- and home-based activities.

The Autism Center has also evaluated sleep issues as part of both long-term research studies and in the clinical setting. A 2020 study led by the 91Ě˝»¨was the first to show links between growth in the hippocampus – a key part of the brain for learning and memory — and sleep problems in infants who are later diagnosed with autism.

“It is so exciting see the work of so many dedicated families and researchers over the last 16 years come together to reveal things we have never known before about how autism develops,” said , director of the 91Ě˝»¨Autism Center. “By assessing and monitoring development in infants who have a family history of autism, we can learn better ways to support caregivers and work on finding innovative ways to help infants reach their fullest potential.”

The new study was funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institute of Environmental Health Sciences, and National Institute of Mental Health, Autism Speaks and the Simons Foundation.

Along with the 91Ě˝»¨and UNC at Chapel Hill, other participating institutions are Children’s Hospital of Philadelphia, the University of Pennsylvania, the University of Minnesota, New York University, the University of Texas at Dallas, Washington University, the University of Alberta and McGill University. The imaging sites are located in Seattle, St. Louis, Philadelphia, Chapel Hill, North Carolina, and Minneapolis-St. Paul.

For more information, contact Dager at srd@uw.edu or Estes at estesa@uw.edu.

Adapted from a University of North Carolina at Chapel Hill press release.

Infants spend most of their first year of life asleep. Those hours are prime time for brain development, when neural connections form and sensory memories are encoded.

But when sleep is disrupted, as occurs more often among children with autism, brain development may be affected, too. New research led by the 91Ě˝»¨ finds that sleep problems in a baby’s first 12 months may not only precede an autism diagnosis, but also may be associated with altered growth trajectory in a key part of the brain, the hippocampus.

In a published May 7 in the American Journal of Psychiatry, researchers report that in a sample of more than 400 6- to 12-month-old infants, those who were later diagnosed with autism were more likely to have had difficulty falling asleep. This sleep difficulty was associated with altered growth trajectories in the hippocampus.

“The hippocampus is critical for learning and memory, and changes in the size of the hippocampus have been associated with poor sleep in adults and older children. However, this is the first study we are aware of to find an association in infants as young as 6 months of age,” said lead author , a postdoctoral researcher at the 91Ě˝»¨Autism Center.

As many as 80% of children with autism spectrum disorder have sleep problems, said , director of the and senior author on the study. But much of the existing research, on infants with siblings who have autism, as well as the interventions designed to improve outcomes for children with autism, focus on behavior and cognition. With sleep such a critical need for children — and their parents — the researchers involved in the multicenter , or IBIS Network, believed there was more to be examined.

“In our clinical experience, parents have a lot of concerns about their children’s sleep, and in our work on early autism intervention, we observed that sleep problems were holding children and families back,” said Estes, who is also a 91Ě˝»¨professor of speech and hearing sciences.

Researchers launched the study, Estes said, because they had questions about how sleep and autism were related. Do sleep problems exacerbate the symptoms of autism? Or is it the other way around — that autism symptoms lead to sleep problems? Or something different altogether?

“It could be that altered sleep is part-and-parcel of autism for some children. One clue is that behavioral interventions to improve sleep don’t work for all children with autism, even when their parents are doing everything just right. This suggests that there may be a biological component to sleep problems for some children with autism,” Estes said.

To consider links among sleep, brain development and autism, researchers at the IBIS Network looked at MRI scans of 432 infants, surveyed parents about sleep patterns, and measured cognitive functioning using a standardized assessment. Researchers at four institutions — the UW, University of North Carolina at Chapel Hill, Washington University in St. Louis and the Children’s Hospital of Philadelphia — evaluated the children at 6, 12 and 24 months of age and surveyed parents about their child’s sleep, all as part of a longer questionnaire covering infant behavior. Sleep-specific questions addressed how long it took for the child to fall asleep or to fall back asleep if awakened in the middle of the night, for example.

At the outset of the study, infants were classified according to their risk for developing autism: Those who were at higher risk of developing autism — about two-thirds of the study sample —  had an older sibling who had already been diagnosed. Infant siblings of children with autism have a 20 percent chance of developing autism spectrum disorder — a much higher risk than children in the general population.

A 2017 study by the IBIS Network found that infants who had an autistic older sibling and who also showed expanded cortical surface area at 6 and 12 months of age were more likely to be diagnosed with autism compared with infants without those indicators.

In the current study, 127 of the 432 infants were identified as “low risk” at the time the MRI scans were taken because they had no family history of autism. They later evaluated all the participants at 24 months of age to determine whether they had developed autism. Of the roughly 300 children originally considered “high familial risk,” 71 were diagnosed with autism spectrum disorder at that age.

Those results allowed researchers to re-examine previously collected longitudinal brain scans and behavioral data and identify some patterns. Problems with sleep were more common among the infants later diagnosed with autism spectrum disorder, as were larger hippocampi. No other subcortical brain structures were affected, including the amygdala, which is responsible for certain emotions and aspects of memory, or the thalamus, a signal transmitter from the spinal cord to the cerebral cortex.

The UW-led sleep study is the first to show links between hippocampal growth and sleep problems in infants who are later diagnosed with autism.

Other studies have found that “overgrowth” in different brain structures among infants who go on to develop those larger structures has been associated, at different stages of development, with social, language and behavioral aspects of autism.

While the 91Ě˝»¨sleep study found a pattern of larger hippocampal volume, and more frequent sleep problems, among infants who went on to be diagnosed with autism, what isn’t yet known is whether there is a causal relationship. Studying a broader range of sleep patterns in this population or of the hippocampus in particular may help determine why sleep difficulties are so prevalent and how they impact early development in children with autism spectrum disorder.

“Our findings are just the beginning — they place a spotlight on a certain period of development and a particular brain structure but leave many open questions to be explored in future research,” MacDuffie said.

A focus on early assessment and diagnosis prompted the 91Ě˝»¨Autism Center to establish an infant clinic in 2017. The clinic provides evaluations for infants and toddlers, along with psychologists and behavior analysts to create a treatment plan with clinic- and home-based activities — just as would happen with older children.

The 91Ě˝»¨Autism Center has evaluated sleep issues as part of both long-term research studies and in the clinical setting, as part of behavioral intervention.

“If kids aren’t sleeping, parents aren’t sleeping, and that means sleep problems are an important focus for research and treatment,” said MacDuffie.

The authors note that while parents reported more sleep difficulties among infants who developed autism compared to those who did not, the differences were very subtle and only observed when looking at group averages across hundreds of infants. Sleep patterns in the first years of life change rapidly as infants transition from sleeping around the clock to a more adult-like sleep/wake cycle. Until further research is completed, Estes said, it is not possible to interpret challenges with sleep as an early sign of increased risk for autism.

The study was funded by the National Institutes of Health, Autism Speaks and the Simons Foundation. , professor of radiology at the 91Ě˝»¨School of Medicine and , research scientist at the 91Ě˝»¨Autism Center, were co-authors. Additional co-authors, all at IBIS Network institutions, were , , and at the University of North Carolina at Chapel Hill; , now at the James S. McDonnell Foundation; at the Children’s Hospital of Philadelphia; and at the University of Minnesota; at the University of Texas at Dallas; at Washington University in St. Louis; and at the University of Alberta.

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For more information, contact Estes at estesa@uw.edu.

A multicenter research team that includes the 91Ě˝»¨ Autism Center has received a five-year, $9.5 million grant to determine whether brain imaging can help detect infants who are likely to go on to develop autism spectrum disorder.  Led by Washington University and the University of North Carolina at Chapel Hill, the research network of eight institutions received the grant from the National Institutes of Health’s National Institute of Mental Health.

The new grant supports the continued efforts of researchers in the , or IBIS, network. Scientists will scan the brains of 250 children who have an older sibling with autism, looking for differences that predict which high-risk children are more, and less, likely to develop the condition.

“Our studies have identified brain alterations in high-risk infants at 6 months of age that can predict a later autism diagnosis,” said professor of radiology at the 91Ě˝»¨ School of Medicine and principal investigator at the UW. “Now we are going to work with a new group of families to confirm whether our initial findings can be replicated.”

Infant siblings of children with autism have a 20 percent chance of developing autism spectrum disorder themselves – a much higher risk than children in the general population.  Researchers believe that if brain scans can accurately identify which infants are at highest risk, then careful assessment over the first two years of life could detect behavioral symptoms as soon as they emerge. This would allow interventions to begin sooner and improve those children’s outcomes.

IBIS researchers published in 2017, which showed that magnetic resonance imaging (MRI) correctly identified 80% of babies who went on to be diagnosed with autism at age 2. They also correctly predicted more than 90% of babies who subsequently did not receive that diagnosis.

“These imaging findings are very exciting and, if replicated, can allow much earlier diagnosis of autism,” said Dager.

The , part of the Center on Human Development and Disability, has long studied the signs of autism and the effectiveness of intervention strategies, and has been involved with IBIS since its inception.

“We have learned so much from the children and families in the IBIS studies. We understand much more about the way autism symptoms unfold in infants with autism risk, starting with subtle early sensory-motor signs and developing into social communication and repetitive behavior in the second year of life,” said , director of the 91Ě˝»¨Autism Center, research professor of speech and hearing sciences, and co-lead investigator of the IBIS study in Seattle. “These brain findings in the first year of life could be game-changers if the findings hold up. They could allow us to approach autism in a new way, before symptoms emerge.”

As parents from around the country brought younger and younger children to be evaluated at the UW, the 91Ě˝»¨Autism Center . The clinic provides evaluations for infants and toddlers up to 24 months of age, along with psychologists and behavior analysts to create a treatment plan with clinic- and home-based activities — just as would happen with older children.

“IBIS families told us how valuable it was to have assessments over the first years of life so they could be sure that any signs of autism would be caught as soon as possible,” said Tanya St. John, a clinical psychologist at the 91Ě˝»¨Autism Center. “It has been gratifying to bring these services to families in the community, including people who may not have a family history of autism but who just have questions about their infant’s development. Our team has been able to see these young children quickly and get their parents the information and support they need.”

For the new study, babies will undergo MRI scans while asleep. Those tests will be performed when the infants are 6 and 12 months old, to analyze both the brain’s structure and its functional connections. Infants also will be evaluated for language development, repetitive behaviors, social responsiveness and other behaviors that may, in the future, help understand how autism unfolds in the first year of life.

“Our goal is to improve outcomes for infants at highest risk,” said Estes. “Intervention that starts before children fall far behind in development, and perhaps before symptoms become clear, might prevent many problems faced by families today.”

Along with the UW, Washington University and the University of North Carolina, other institutions involved are Children’s Hospital of Philadelphia, the University of Minnesota, New York University, the University of Alberta and McGill University. Families participating in the study must travel to the IBIS screening site nearest their hometowns. The imaging sites are located in Seattle, St. Louis, Philadelphia, Chapel Hill, N.C., and Minneapolis-St. Paul.

To learn more about the IBIS study in Seattle, contact uwautism@uw.edu.

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Adapted from a Washington University news release.

To new parents, a baby’s every gurgle and glance are fascinating, from a smile at mom or dad to a reach for a colorful toy.

But when a baby doesn’t look at parents and caregivers, imitate gestures and sounds, or engage in play, parents have questions. And a growing number are bringing their babies to the for answers.

As autism diagnoses have increased over the years — an estimated has autism spectrum disorder — parents have looked for signs earlier in their children’s lives, especially if they have an older child with autism. While the in the United States is around 4 years, a growing body of and practice suggests accurate assessment of children as young as 12 months old, though rare, is not only possible, but also useful.

“Many people have an unfounded belief that you have to wait until 36 months of age to diagnose autism. That is not the case,” said , who directs the 91Ě˝»¨Autism Center and is a research affiliate at the . “There is a great deal of value in diagnosing as soon as symptoms emerge — it gives parents a great deal of relief and allows appropriate intervention to begin.”

With only a few infant autism clinics scattered around the country, families have brought their  infants to the 91Ě˝»¨Autism Center from elsewhere in the United States, and in a few cases, the world, Estes said. The natural next step was to dedicate services to them.

The center’s , officially established this spring, provides four clinical psychologists to evaluate infants and toddlers up to 24 months of age, along with teams of behavior analysts to create a treatment plan with clinic- and home-based activities — just as would happen with older children. The difference, Estes explained, is the specific expertise with the infant population.

The Autism Center, part of the , has conducted a number of studies into the signs of autism and the effectiveness of intervention strategies. Earlier this year, Nature published from the center’s involvement in a North American effort that examined brain biomarkers in infants, including those with at least one autistic sibling. The study showed that magnetic resonance imaging (MRI) helped correctly identify 80 percent of babies who would go on to be diagnosed with autism at 2 years of age Researchers are wrapping up another study, focused on toddlers 12 to 24 months old, that looks at structured intervention activities versus a more play-based approach.

That work bolsters the center’s diagnostic and treatment capacity with infants, Estes explained.

For older infants and toddlers, psychologists focus on social and communication deficits, said , a research scientist and clinical psychologist at the center. Typically-developing infants and toddlers spend time engaging and interacting with their caregivers, which helps them learn language and fosters their social development.

“Children showing the early signs of autism don’t do those things as much as expected, or they don’t do them at all,” St. John said. “We look at a repertoire of other behaviors as well: Do they do the same thing over and over? Do they pick up a toy and inspect it closely? Do they have a hard time when you change activities?”

It is less common to diagnose a very young child, St. John said, but when that happens, it’s typically because the symptoms are clear.

“Most people are hesitant to give a diagnosis to a child who isn’t showing clear signs of ASD. We tend to give early diagnoses to children who meet all of the criteria for a diagnosis, and if they’re not, we take an assessment-and-monitoring approach, where we give parents specific recommendations based on the child’s current challenges, and then see the child back 3 to 6 months later,” she explained.

Treatment would follow the same general trajectory, depending on the infant’s symptoms and development, as toddlers and older children. Specialists might work on communication, for instance, through strategies to encourage eye contact. As children age, they work with specialists on cognitive, social and motor skills, both individually and in peer groups. Much of the Autism Center’s approach is designed to give parents tools that they can use at home, Estes said.

Spotting the signs of autism early is critical, she added, so that a family can connect with the right services, whether in the clinic or out in the community.

A little over three years ago, the Autism Center accurately diagnosed its youngest client: a 10-month-old boy. Thanks to subsequent intervention activities, Estes said, he has developed communication skills, engages socially and is thriving in preschool.

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For more information, contact Annette Estes, estesa@uw.edu; 206-543-1051.

Researchers from the 91Ě˝»¨ were part of led by the University of North Carolina to use MRI to measure the brains of “low-risk” infants, with no family history of autism, and “high-risk” infants who had at least one autistic older sibling. A computer algorithm was then used to predict autism before clinically diagnosable behaviors set in. was published Feb. 15 in the journal .

This is the first study to show that it is possible to use brain biomarkers to identify which infants in a high-risk pool — that is, those having an older sibling with autism — will be diagnosed with autism spectrum disorder, or ASD, at 24 months of age.

“Typically, the earliest we can reliably diagnose autism in a child is age 2, when there are consistent behavioral symptoms, and due to health access disparities the average age of diagnosis in the U.S. is actually age 4,” said co-author and 91Ě˝»¨professor of speech and hearing sciences , who is also director of the and a research affiliate at the 91Ě˝»¨, or CHDD. “But in our study, brain imaging biomarkers at 6 and 12 months were able to identify babies who would be later diagnosed with ASD.”

The predictive power of the team’s findings may inform the development of a diagnostic tool for ASD that could be used in the first year of life, before behavioral symptoms have emerged.

“We don’t have such a tool yet,” said Estes. “But if we did, parents of high-risk infants wouldn’t need to wait for a diagnosis of ASD at 2, 3 or even 4 years and researchers could start developing interventions to prevent these children from falling behind in social and communication skills.”

People with ASD — which includes 3 million people in the United States — have characteristic social communication deficits and demonstrate a range of ritualistic, repetitive and stereotyped behaviors. In the United States, it is estimated that up to one out of 68 babies develops autism. But for infants with an autistic older sibling, the risk may be as high as one out of every five births.

This research project included hundreds of children from across the country and was led by researchers at four clinical sites across the United States: the University of North Carolina-Chapel Hill, UW, Washington University in St. Louis and The Children’s Hospital of Philadelphia. Other key collaborators are at the Montreal Neurological Institute, the University of Alberta and New York University.

“We have wonderful, dedicated families involved in this study,” said , a 91Ě˝»¨professor of radiology and associate director of the CHDD, who led the study at the UW. “They have been willing to travel long distances to our research site and then stay up until late at night so we can collect brain imaging data on their sleeping children. The families also return for follow-up visits so we can measure how their child’s brain grows over time. We could not have made these discoveries without their wholehearted participation.”

Researchers obtained MRI scans of children while they were sleeping at 6, 12 and 24 months of age. The study also assessed behavior and intellectual ability at each visit, using criteria developed by Estes and her team. They found that the babies who developed autism experienced a hyper-expansion of brain surface area from 6 to 12 months, as compared to babies who had an older sibling with autism but did not themselves show evidence of autism at 24 months of age. Increased surface area growth rate in the first year of life was linked to increased growth rate of brain volume in the second year of life. Brain overgrowth was tied to the emergence of autistic social deficits in the second year.

The researchers input these data — MRI calculations of brain volume, surface area, and cortical thickness at 6 and 12 months of age, as well as sex of the infants — into a computer program, asking it to classify babies most likely to meet ASD criteria at 24 months of age. The program developed the best algorithm to accomplish this, and the researchers applied the algorithm to a separate set of study participants.

Researchers found that, among infants with an older ASD sibling, the brain differences at 6 and 12 months of age successfully identified 80 percent of those infants who would be clinically diagnosed with autism at 24 months of age.

If these findings could form the basis for a “pre-symptomatic” diagnosis of ASD, health care professionals could intervene even earlier.

“By the time ASD is diagnosed at 2 to 4 years, often children have already fallen behind their peers in terms of social skills, communication and language,” said Estes, who directs behavioral evaluations for the network. “Once you’ve missed those developmental milestones, catching up is a struggle for many and nearly impossible for some.”

Research could then begin to examine interventions on children during a period before the syndrome is present and when the brain is most malleable.  Such interventions may have a greater chance of improving outcomes than treatments started after diagnosis.

“Our hope is that early intervention — before age 2 — can change the clinical course of those children whose brain development has gone awry and help them acquire skills that they would otherwise struggle to achieve,” said Dager.

The research team has gathered additional behavioral and brain imaging data on these infants and children — such as changes in blood flow in the brain and the movement of water along networks — to understand how brain connectivity and neural activity may differ between high-risk children who do and don’t develop autism. In a published Jan. 6 in , the researchers identified specific brain regions that may be important for acquiring an early social behavior called joint attention, which is orienting attention toward an object after another person points to it.

“These longitudinal imaging studies, which follow the same infants  as they grow older, are really starting to hone in on critical brain developmental processes that can distinguish children who go on to develop ASD and those who do not,” said Dager. “We hope these ongoing efforts will lead to additional biomarkers, which could provide the basis for early, pre-symptomatic diagnosis and serve also to guide individualized interventions to help these kids from falling behind their peers.”

The research was funded by the National Institutes of Health, and the .

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For more information, contact Estes at 206-543-1051 or estesa@uw.edu and Dager at 206-616-1558 or srd@uw.edu.

Grant numbers: HD055741, HD003110, R01 MH093510, 6020, 140209.

Adapted from by the UNC news office.

The study will involve testing children’s teeth for levels of environmental chemicals that they might have been exposed to in the womb, a critical time for neurodevelopment. Additionally, for a smaller number of children whose genetic data has been collected, the researchers hope to explore whether genetic susceptibility plays a role in how chemical exposure might impact autism risk.

The initiative is focused on children with older siblings who have autism, since they have a much higher risk of developing it — roughly one in five is diagnosed with autism spectrum disorder, or ASD, versus the national average of one in 68. The study could provide new insight on whether those children are also at a higher risk of autism from environmental factors, said , one of three 91Ě˝»¨researchers involved in the study.

“The causal factors related to autism are largely genetic, but the risk of autism doesn’t seem to be accounted for by genetics alone,” said Estes, director of the and a research professor in speech and hearing sciences.

“There are probably a lot of different environmental factors that might increase the risk for someone who already has that genetic risk.”

The study is being led by Drexel University in Philadelphia and will involve more than 1,700 children, including almost 1,300 who have siblings with autism and are therefore considered high-risk, and a comparison group of more than 400 children classified as low-risk since they don’t have siblings with autism. The 91Ě˝»¨researchers will work with children that have undergone brain imaging and other autism testing at the 91Ě˝»¨over the past decade, starting at between three and six months of age.

The other 91Ě˝»¨researchers are , director of the Research in Early Autism Detection and Intervention () Lab, and , a 91Ě˝»¨professor of radiology and associate director of the .

“This is an innovative and exciting approach,” Dager said. “The opportunity to analyze deciduous teeth as a reservoir of toxin exposure before birth and in the post-natal period holds great promise for better understanding environmental influences on the development of autism.”

Chemicals being examined in the study include heavy metals and organochlorine pesticides such as , and that were once widely used in electrical equipment. Though banned in the 1970s, the chemicals remain in the environment and human exposure continues. The study will also look at , used to soften plastic and as solvents in cosmetics and other consumer goods.

The work is being funded by the National Institutes of Health under its new Environmental Influences on Child Health Outcomes Initiative. Wednesday, the seven-year effort will provide $157 million for a variety of projects looking at how exposure to environmental factors in early development — from conception through early childhood — impacts health in children and adolescents.

“This project provides a unique opportunity for us to learn about the contribution of environmental risk factors to the development of ASD,” Stone said. “Studying the shed teeth of children who were high-risk infants, in combination with information about which infants have later been diagnosed with ASD, will help us understand which specific environmental chemicals may or may not be associated with ASD symptom development.”

By providing new insights into the complex mechanisms underlying autism, the study could lead to more effective prevention, said Stone, who is also a 91Ě˝»¨professor of psychology.

“Identifying different levels and types of autism risk will enable us to provide specialized preventive strategies, with the goal of improving outcomes for children as well as their families,” she said.

Other institutions involved in the study are Icahn School of Medicine at Mount Sinai, Washington University, Kaiser Permanente Division of Research, John Hopkins University, the Kennedy Krieger Institute, the University of Miami, the University of North Carolina at Chapel Hill, Children’s Hospital of Philadelphia and the University of California, Davis.

For more information, contact Estes at estesa@uw.edu or 206-543-1051, Stone at stonew@uw.edu or 206-685-2821 or Dager at srd@uw.edu or 206-616-1558.

This story was adapted from a news release from Drexel University.

The study is the first in more than 20 years to look at long-term outcomes after early intensive autism intervention. The therapy began when children were 18 to 30 months of age and involved therapists and parents working with the toddlers in their homes for more than 15 hours each week for two years.

The study will appear in the July issue of the and is published .

“When you intervene early in a child’s life, you can make a big difference,” said lead author , director of the . “We hope this translates to a higher quality of life for people with autism spectrum disorder.”

The therapy, known as the , or ESDM for short, was designed to promote social and communication skills and learning. The research team found that two years after completing the intervention, children maintained gains in overall intellectual ability and language and showed new areas of progress in reduced autism symptoms.

This type of intervention has been shown to help children with autism, but it hadn’t been shown to work with very young children over a longer timescale until now.

These results make the case for autism-specific, one-on-one intervention to begin as soon as autism symptoms emerge, which for many children is before 30 months of age, Estes said.

“This is really important,” she said. “This is the kind of evidence that is needed to support effective intervention policies for children with autism, whether it’s insurance coverage or state support for early autism intervention.”

The researchers studied two groups of young children with autism – the first received community intervention as usual for two years, which was a mix of what was available in the community such as speech therapy and developmental preschool.

The second group received ESDM, which addresses a comprehensive set of goals, is delivered one-on-one in the home, and incorporates parent coaching and parent-delivered intervention with the child. This approach is designed to enhance a child’s motivation and follows each child’s interests in playing with toys and engaging in fun activities, songs and basic daily routines.

After two years of intensive intervention, children in the ESDM group showed a significantly greater increase in IQ, adaptive functioning, communication and other measures than did the comparison group.

“These findings indicate that children who had received the ESDM earlier in their lives continued to progress well with significantly less treatment than the comparison children received,” said co-author , a University of California, Davis professor of psychiatry and co-creator of the Early Start Denver Model intervention.

It was surprising to researchers that two years after the early intervention ended, children who received the one-on-one care saw their autism symptoms reduce further, while children who had participated in community intervention had no overall reduction.

This kind of treatment is important for the well-being of children with autism, but it’s also a good idea economically, Estes added.

“People who are better able to communicate, care for themselves and participate in the workforce at greater levels will need less financial support in their lives,” she said.

Other co-authors are Jeffrey Munson and Jessica Greenson with the 91Ě˝»¨Autism Center; Jamie Winter at Weill-Cornell Medical College; and Geraldine Dawson at Duke University.

This research was funded by the National Institutes of Health, the National Institute of Mental Health, the Autism Center of Excellence and the Autism Speaks foundation.

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For more information, contact Estes at estesa@uw.edu or 206-543-1051.

Grant numbers: Autism Center of Excellence (MH81757); Autism Speaks foundation (1720).

When the opened its doors in 2000, the notion that the disorder could be detected in preschool-aged children was controversial.

“We were diagnosing kids between 3 and 4 years of age,” recalled , a 91Ě˝»¨professor of radiology and the center’s former interim director. “People were still skeptical that you could diagnose autism that early.”

Much has changed since then. Researchers can now diagnose autism in some children before 12 months. Autism’s prevalence has skyrocketed from one in 600 people nationwide to . The 91Ě˝»¨center has expanded its programs and services, added a second location in Tacoma and grown from serving 50 people its first year to more than 500 annually.

As awareness has grown about autism’s long-term impacts, the center, which will celebrate its 15th anniversary with an April 30, has increasingly focused on providing a continuum of services from birth through adulthood. That’s something Director is proud of.

“We maybe don’t see the volume of people another center might serve, but we see each person for a long period of time and for much more integrated therapy,” she said. “We are working toward offering a life-span model, so that we have services that grow with the person.”

Those services start with comprehensive evaluations of children as young as infants, since early intervention can make a tremendous difference in behavior and skills. Treatment ranges from intensive behavioral intervention to individual counseling, social skills instruction, in-home sessions, speech and language therapy and sleep clinics.

The center offers evidence-based training for parents, educators and health professionals on behavioral strategies, classroom tactics, diagnostic tools and other topics. For children, there are five-week summer camps to help build social skills and self-esteem in a fun, low-key environment alongside siblings and peers. Enrollment has almost tripled since the camps started in 2006.

“We always fill them,” Estes said. “There’s a huge demand.”

‘It’s been amazing’

On a recent weekday afternoon, Estes sat on the floor playing with 2-year-old Caellum Ortiz while his mother, Zoe Ortiz, looked on. The little boy pressed the buttons on a brightly colored popup toy, smiling as various Disney characters appeared.

“Who’s that? That’s Donald Duck!” Estes said.

“Mickey my favorite,” Caellum said.

The Ortiz family has two other children, a son and a daughter, and all three have varying forms of autism spectrum disorder, characterized by delays in social interaction and communication, and restricted, repetitive behaviors and interests.

Caellum is participating in an early-intervention study that also provides in-home behavioral therapy and parent coaching. Ortiz said the visits have been invaluable for the family, including Caellum’s two older siblings, ages 3 and 5.

“It’s been amazing,” she said. “They’re working with Caellum but they also work on his social interactions with his siblings, because that’s a huge deal. It’s helping all three of them.”

Center staff are also helping Ortiz navigate the sometimes overwhelming challenges of raising three children with autism.

“They’ve been really supportive in listening to me and talking me through the issues we’ve had,” she said. “I’ve learned a lot from them.”

Providing training to parents helps them become advocates for their children throughout their lives, Estes said, a critical skill for navigating a disjointed health care system.

“Finding the right services can be a challenge,” she said. “Parents are constantly having to learn and adapt to new systems, depending on the age of their child.”

Pioneering research

The 91Ě˝»¨Autism Center was launched with a $5 million endowment from Microsoft executive Richard Fade and wife, Susan, and a matching $5 million gift from an anonymous donor.

From the start, said Founding Director Geraldine Dawson, the center has focused on developing early interventions and training community professionals to build treatment capacity. It also emphasizes a holistic approach that looks not just at the behavioral aspects of autism but also the medical conditions associated with it, such as sleep problems and gastrointestinal disorders.

“What we’ve learned is that by addressing those issues, we can greatly improve the outcomes for people with autism,” said Dawson, now the director of the Duke Center for Autism and Brain Development at Duke University.

A primary research focus at the 91Ě˝»¨center has been brain-imaging of infants to identify functional and structural changes that might indicate autism. The center launched one of the first longitudinal studies looking at how brain changes in children with autism evolve and correspond to behavioral symptoms of the disorder. Among its findings are that children with autism have developmental patterns of brain chemistry changes that are different from other children.

The center has also carried out four coordinated research efforts over the past 15 years that enrolled children in various studies simultaneously, allowing researchers to collect a valuable cross-section of information on brain structure and chemistry, behavior and other autism indicators.

“It is very rare to have that continuity,” Estes said. “The data we’ve collected here is really a treasure.”

When the center started, Dawson said, around half of people with autism were expected never to speak or be minimally verbal. That figure has dropped to about 25 percent, she said, and through early intervention and innovative new treatments, is expected to further decrease.

“We’re getting so much more sophisticated at tailoring both the medical and the behavioral interventions to each individual person,” she said.

Researchers now know that autism is not one condition, but a group of complex brain disorders. Hundreds of genes linked to autism have been identified in recent years, and scientists are working to pinpoint genetic subtypes of autism associated with specific medical conditions that could lead to more personalized treatments.

With increased understanding about autism’s complexity is a growing awareness of patients’ long-term needs. There’s been a shift toward developing ways to help adolescents and young adults with autism find employment and live satisfying, meaningful lives, Dawson said. earlier this month that it is piloting a program to hire people with autism for full-time jobs at its headquarters is an encouraging sign, she said.

“I think it’s very much a reflection of our times,” she said. “We’re recognizing that people with autism have some very unique talents and gifts that can be extremely helpful in the work environment, and that they have something great to offer to society.”

Still, about half of people with autism remain severely impaired throughout their lives, Estes said, and an ongoing focus at the center will be on determining how appropriate interventions can help improve life for them.

“There are these wonderful stories of hope, but there’s also the reality for people with autism,” she said. “It’s something most people deal with their entire lives.”