A positive emotional climate at home and inclusive educational experiences while at school can have long-lasting beneficial effects for individuals with autism spectrum disorder (ASD), according to a recent study by researchers at the Waisman Center at the University of Wisconsin-Madison and the University of Massachusetts.
As children with ASD transition to adulthood many of them show appreciable improvement of their symptoms. But the degree of improvement is highly variable.
Could these differences in how much an individual’s ASD symptoms change depend on their experiences while growing up? If so, could well-designed interventions provide a lifetime of meaningful and steady progress for individuals with ASD?
To begin to answer these questions, Ashley Woodman, now at the University of Massachusetts Amherst, and previously a postdoctoral researcher at the Waisman Center’s Lifespan Family Research Program, led by Marsha Mailick and Jan Greenberg, studied 364 families who had been followed for more than a decade in research funded by the NIH. Each family included a child with ASD who was at least ten years old.
“Previous studies looked at the progression of a single functional domain, or behavior, such as the ability to perform daily tasks,” says Woodman.
For this study though, Woodman and her colleagues combined three different behavioral variables for their analyses: 1) challenging behaviors, such as being uncooperative or disruptive, 2) the severity of autism symptoms and 3) independence in activities of daily living, from making a sandwich to handling finances.
Leann Smith, a researcher with the Lifespan Family Research Program and a co-author of the study says, “by thinking about several kinds of behaviors, or variables, we can begin to look at the person as a whole.” And taking this ‘person-centered’ approach is important “because that’s how we all travel through life; we have many strengths and some areas of challenge.”
“To our knowledge, this is the first study to combine variable-centered and person-centered approaches,” says Woodman, which gives the researchers a more holistic understanding of how individuals with ASD progress over time.
After following hundreds of individuals with ASD for years, Mailick and her colleagues were ready to study whether there are subgroups of individuals with ASD whose symptoms might be changing differently from one another.
To discover if there are indeed distinct groups, Waisman researchers first determined behavioral trajectories for each individual. For example, were their autism symptoms becoming less severe and was there an improvement in their ability to perform daily activities?
Once individual trajectories were established, researchers used statistical analyses to fit them into groups or clusters.
Woodman and her colleagues found that two groups fit the data. One group showed consistent improvement over time — reduction in ASD symptoms, fewer challenging behaviors and an increased ability to perform daily activities. The second group consisted of individuals whose behaviors didn’t change much over time.
Importantly, “there wasn’t a group whose functioning became worse with time, at least during the years of our study” says Woodman, “and that’s a message of hope to individuals with autism and their families.”
The researchers were determined to go beyond discovering the two groups. They wanted to find ways to predict which group an individual with ASD would end up in. And they were particularly interested in the effect of the larger environment on development in adulthood.
“We are never just a person in a void; we are always a person in a context, some sort of setting or situation,” says Smith. “We can’t pull ourselves apart and be entirely separate from the places we go, the people we interact with and the things we see or experience.”
So Waisman researchers focused on two environments that youth are most often immersed in: their families and their schools.
“We measured the positivity of the family environment and the extent to which the child was included in ‘regular’ educational settings rather than segregated in special education,” says Mailick.
Maternal positivity—or how optimistic and encouraging a mother is in relation to her child—increased the chance that an individual with ASD would belong to the group that showed consistent improvement of behaviors and symptoms.
And those who had experienced any form of inclusion in school were between three and five times more likely to be a member of the group that showed behavioral improvements over time, compared to individuals who had not spent any interval in an inclusive school environment.
Crucially, “these powerful positive effects, both within the family and in schools, were important regardless of level of intellectual disability,” says Woodman.
It is highly encouraging that both the environments identified in the study as affecting long-term outcomes for individuals with ASD can be modified. “This research is a message of hope that says that families can truly make a difference in the lives of individuals with autism,” says Mailick. “It also highlights the importance of providing support to families that can help maintain this positive home environment.”
Mailick also says that the study provides good evidence that investing in inclusive education has decades-long pay-off for society.
When young, the brain is relatively plastic and able to change, and the environment is known to play a large role during this period of development. “What we have shown is that it continues to matter for how people change as adults,” says Smith.
Mailick points out that this study also highlights the importance of longitudinal research for science and public policy. “At each time point during the course of the study we would have seen only a snapshot and may have missed some of the critical broader implications we discovered,” she says, “but by studying trajectories of development over many years, we develop a much more complete understanding of how earlier experiences lead to later outcomes, and affect quality of life.”
Among future goals, Smith and her colleagues at the Lifespan Family Research Program hope to more precisely understand the effect of inclusive education. Upcoming studies will explore how the quality of educational experiences in different settings and their timings affect individuals with ASD.
In partnership with the University of North Carolina at Chapel Hill and San Diego State University, Smith and other Waisman researchers are working with 20 high schools across Wisconsin to provide professional development opportunities to school-wide teams on how to support individuals with ASD throughout their educational experiences.
“This study shows that an inclusive educational context can be hugely beneficial to individuals with ASD,” says Smith “and we want to support schools as they include students with ASD in general education settings.”
This research was published earlier this year in the Journal of Autism and Developmental Disorders and can be accessed here.