The study, which was published in JAMA Open on March 29, followed more than 270 children who were diagnosed with autism spectrum disorder (ASD) in Canada from roughly age 2 until they were around 10 years old—making it one of “the biggest longitudinal research studies of its kind in the world.” The results showed that 80% of the participants achieved proficiency or growth in at least one of five key development areas, such as communication or socialization. Here’s a closer look at what the latest research on children with autism found, as well as the importance of taking a “strengths-based approach” to measuring development.
The Study
For this study, researchers led by The Hospital for Sick Children and the Centre for Addiction and Mental Health recruited 272 children diagnosed with ASD from a mix of urban and rural clinics across Canada. Boys comprised 86% of the total group, and participants were nearly 3 1/2 years old, on average, at the start of the study. The researchers measured children’s competency and improvement over time in five key areas of development: communication, socialization, daily living skills, and emotional health in terms of internalizing behavior and externalizing problems. They determined how well the children were doing using a mix of reported observations from their primary caregiver (who was usually their mother), as well as tests and other tools completed by examiners at the clinics and by the participants’ teachers. Researchers collected this data on the participants across two different time periods (May 2005 through October 2012, then again between May 2009 and March 2018) to get a sense of how well the children were doing as they approached adolescence. The study found that 80% of children with autism were “doing well,” defined as showing growth or competency in at least one developmental area, when the second set of data was collected. What’s more, 20% of the children did well in four or all five of the assessed skills by about age 10. “This is an important contribution to the literature in this area of research,” says Kiti Freier Randall, PhD, pediatric neurodevelopmental psychologist and medical director of the Inland Empire Autism Assessment Center of Excellence in San Bernardino, California. “It was a well done study. It was longitudinal, and those are hard to do because they take commitment.” It’s important to note that this study was conducted in Canada and the findings are not necessarily generalizable to children with autism in the United States, where access to early intervention programs and other services may be different. More research is also needed to determine how children with autism do depending on their racial background, given disparities in access to healthcare and services among minorities, says Daniel Bagner, PhD, professor of psychology at Florida International University’s Center for Children and Families and director of the Early Childhood Behavior Lab. “Children with autism who are from lower socioeconomic backgrounds and from racial and ethnic minority backgrounds do not receive services to the same extent as their white counterparts of higher socioeconomic status,” he explains. “In the context of racial equity, that’s a critical piece to consider.”
Applying a “Strengths-Based” Approach to Autism
Most research on autism evaluates people based on their deficits, such as gaps in intellectual or skills development. This study was unique in that it took a “strengths-based approach,” a more holistic, human-centered measurement of how well someone with autism is doing based on improvements in their skills as they get older. “A strengths-based approach focuses less on where the child is struggling and more on the kinds of things we can capitalize on,” explains Bagner. Freier Randall uses the example of a child with autism who has difficulty with social-relational skills and communication to show how a strengths-based approach can be put in action. “I’d say to the parent that your child looks to you for comfort and approval, as opposed to saying they just don’t communicate, and that’s the beginning of reciprocal communication,” she says. “It means there’s something we can build upon.” The authors wrote that they preferred the phrase “doing well,” as opposed to having “good outcomes,” as it is less value-laden for people with autism. This approach also acknowledges that improvements should not be thought of as having a final endpoint, but rather as a continuous journey throughout life. “It makes sense to look at the individual child and the trajectory of their independent growth, and it’s understandable that there would be variability because that’s the nature of autism,” says Rebecca Mannis, PhD, developmental psychologist, learning specialist who has taught adults and children with special needs (including autism), and founder of the Ivy Prep Learning Center in New York City. Looking at how well a child with autism is doing over time also allows them the opportunity to continue growing and improving, adds Frier Randall. “I love the idea of talking about perhaps how they’re doing as an individual or meeting their potential and keeping alive growth and hope. When they meet goals, you set another goal, and you promote active continued growth,” she says.
Setting Children With Autism Up for Success
This latest research highlights the importance of early diagnosis and intervention for children with autism. The findings showed that the participants who had greater difficulties with emotional health at the beginning of the study were more likely to show growth in that area. Likewise, those who had better emotional health at the start of the research had a higher likelihood of achieving competency in that area later in childhood. “Early intervention makes a difference,” says Freier Randall. “We need to make a concerted effort to provide the diagnosis, not to label every child, but to get the right interventions to them at the right time. It takes a comprehensive evaluation to determine the right treatment.” Family is also critical to the success of children with autism. The research showed that children with better family functioning in areas like communication, discipline, and support tended to do better later in childhood. “Family attributes have a lot to do with the outcomes of the child—no matter the child—but certainly the child with developmental delays or disabilities,” says Freier Randall. “The family home environment is the container for the child, and it’s important that the container doesn’t join a child’s chaos, but provide stability for it.” And that supportive, stable environment starts with a strong investment from the parents in their child’s wellbeing, adds Mannis. “It’s so important for parents to be thinking critically and understanding and analyzing new information about autism,” she says. “Parents should use this information to be their children’s best advocate and cheerleader.” None of this is in a vacuum, though. Experts say it’s critical that communities and governments continue to look for new ways to support the families of children with autism—especially now, given the ongoing challenges of the pandemic. “Right now, in terms of COVID, resources and interventions have been halted or altered,” says Freier Randall. “These families are under a ton of stress and we, as a community, need to band around them and support them, so they can be the family environment that this article shows helps children do well.” The information in this article is current as of the date listed, which means newer information may be available when you read this. For the most recent updates on COVID-19, visit our coronavirus news page. This study found that looking at a child’s strengths and growth in certain areas over time may offer a better assessment of how well they’re doing compared to their younger selves. This approach offers parents the opportunity to get a more holistic view of children with autism as individuals on unique trajectories. Early diagnosis and intervention, as well a supportive stable home environment, can help children with autism reach their full potential. If you think your child may have autism or have other concerns about their development, get in touch with your pediatrician or another medical professional for a comprehensive evaluation.
