This BYU study shows how parents can help their kids who have autism

Parents of children with autism spectrum disorder are around their children enough to recognize, report and respond to behavioral issues, new research says, which can lead to treatment that increases the child’s quality of life.

A recent study from BYU found that when parents of children with autism were trained by professionals to intervene at home — what BYU refers to as “parent-implemented interventions” — those children developed better language and behavioral skills that gave them a chance at a brighter future.

It also saves money. The Centers for Disease Control and Prevention says the medical expense annually for a child with autism spectrum disorder averages $4,110 to $6,200 more than for a child without. That’s before you factor in intensive behavioral interventions, a form of one-on-one instruction that can range from 20-40 hours a week depending on the child.

However, there are alternative forms of intervention that occur in the child’s home environment and can greatly influence their future success, the BYU study reports. Researchers found that parent-implemented interventions are a cost- and time-friendly method of steering children with autism in the right direction, which — when combined with clinical therapy — forms an overwhelmingly effective treatment plan.

Early intervention

BYU’s study was led by Wai Man (Linda) Cheng, a doctoral student of the McKay School of Education. The study, which included work from a team of specialists, is a meta-analysis of 51 controlled trials around the globe, nine of them in non-English-speaking countries. It followed the implementation of at-home parental interventions, after intensive training was given to the parents of 2,895 children who were on average 5¹⁄₂ years old.

With about 90 minutes of intervention training across roughly 13 sessions per trial, parents of children with autism spectrum disorder were trained to foster better behavior, communication, social interaction and daily living skills in their child. Parents interacted with children through a variety of methods, including didactic instruction, role play and direct coaching while the researchers tracked the child’s behavior.

Almost across the board, the study found that children with autism spectrum disorder benefit greatly from parental interventions implemented early in a child’s life. Timothy Smith, a professor of the Department of Counseling Psychology and Special Education, who was part of the BYU research team, said that regardless of the child’s background, family composition or the severity of their diagnosis, familial interventions had a resounding impact on a child’s behavior and communication skills across nearly all of the trials. The results were neutral for just 17%.

He said that part of the reason these interventions were so effective was because a parent is with their child far more than a clinical psychologist or an applied behavior analysis therapist.

“A parent can intervene virtually as often as the child is awake,” Smith said. “They can use these skills, reinforce communication, augment life skills and adapt behaviors in a way that a professional is not around enough to do.”

Nate Edwards, BYU

Smith said teaching a child with autism spectrum disorder in a clinic is effective … but only in the clinic. Those skills are reflected in a professional environment, but may not carry over to home, school or work settings. When a child with autism spectrum disorder has their behavior corrected in their home environment, those corrections are likely to stay with the child, even after they’ve left the home. And it’s these early adjustments to a child’s behavior that are the building blocks for a happier, more responsive and self-sufficient child.

Another researcher, Tina Taylor, associate dean of BYU’s McKay School of Education, said these early interventions are not just helpful, but critical for creating better outcomes for children with autism spectrum disorder and their families.

“When kids are diagnosed ages 0-3, that’s when parents need the most help. They’re just getting a handle on the diagnosis,” Taylor said. “There are so many questions that parents need (answered) right away, that by the time they’re in upper elementary or junior high school, parents have a better handle on it … than they did in those early years.”

Assistance in those early years and in times where families are waiting for the resources for their child were where parent-implemented interventions gave families a leg up, Taylor said. It’s worth noting that many children are not diagnosed with autism spectrum disorder until age 3, despite signs of autism showing at 12 to 18 months, according to the National Institutes of Health.

Both Smith and Taylor said that while the interventions do not replace therapy in clinic, they are supplements that are far easier to access and utilize during periods where families are stuck waiting for professional support and resources.

Nate Edwards, BYU

Obstacles and costs

Many children diagnosed with autism spectrum disorder face a lack of resources in their communities, especially rural ones, Taylor said. But a more hidden hurdle for those seeking support are the lengthy waiting lists that families are placed on during the diagnosis and treatment process.

That’s a global issue. The National Health Service of England, for example, reported that of the roughly 122,000 patients waiting for an autism spectrum diagnosis in June 2022, nearly 104,000 had referrals that had been open for at least 13 weeks. The waitlist is lengthy in the United States, too. Wait times to see a specialist for a diagnosis range anywhere from 2-18 months, WLVR of NPR News reported.

By the time the child sees a professional to be given a diagnosis, they are at the age where severe symptoms of the disorder can begin to manifest if the child is on the lower-functioning end of the spectrum. Studies on autistic regression report that this is the age where verbal and social regression become visible, affecting 20% of children that don’t receive early care. This makes large waiting lists more than just a nuisance and early care a necessity.

One of the most straightforward obstacles to treatment of autism spectrum disorder is the cost of services, which adds up over time, hitting some families harder than others. The University of California Los Angeles reported that over half of all children with autism spectrum disorder lived in low-income households and 1 in 4 live in poverty. 

Additionally, insurance coverage requirements vary. The National Conference of State Legislatures reports that while Colorado requires insurance providers to cover treatment and diagnosis of autism spectrum disorder fully in health care plans, for example, providers in neighboring Utah are only required to provide services from age 2 to 10. 

Taylor said that some states focus on providing only one kind or a handful of resources to children with an autism spectrum disorder, but narrow forms of treatment were not sufficient to support these children. Interventions of different varieties provided consistently throughout the child’s life were what was most effective. But having professionals train parents early on and provide behavioral interventions parents can use with their children goes a step further to assist the child with autism spectrum disorder in times of little — or no — support. It sets the child up for a more successful future and gives families hope.

“Parents just need the tools, special insights and strategies that are unique to raising children with autism,” Taylor said. “They can do it. They’re competent and we need to give them the support.”

Nate Edwards, BYU