BYU research recently found that children with autism spectrum disorders perform better when parents are able to intervene at home.
The study looked at over 50 randomized controlled trials from around the world, including nine trials from non-English speaking countries. The study also said it took researchers about a year to comb through the existing literature.
“What was surprising was that the results were so consistent,” said Dr. Tim Smith, a co-author of the study. He and his team found that children with autism benefited from parental intervention regardless of the identity of the parent or caregiver or the type of intervention used.
“It’s not what you do, it’s what you do,” Smith said. “As long as you intervene, the children benefit.”
BYU graduate student Wai Man (Linda) Cheng was the lead author of this study. The work grew out of her master’s thesis, which was inspired by her time with autistic children in China. She said she hopes her research will empower parents of children with autism to get the education they need to help their children.
Finding professional treatment can be difficult — and expensive. Studies show that the average annual cost to families treating a child with autism spectrum disorder is over $34,000. Other estimates are higher, with a lifetime cost of over $3 million.
Stacy Harmer is the mother of a 6 year old adoptive girl. Harmer and her family were unaware that their daughter had autism spectrum disorder before she came into their lives.
Harmer said she researched many types of treatments. She has tried applied behavioral therapy, occupational therapy, speech therapy and has ordered many books on autism. Many of the treatments, she said, have waiting lists.
“It’s not always easy, day to day, but I’m trying to learn as much as I can to help her in her unique situation,” Harmer said. “We just try every day.”
Professional practitioners typically offer intensive one-to-one sessions only a few times a week, but Cheng said she feels that may not be enough.
“We cannot rely solely on practitioners to give the lessons the children need. It’s just impossible. We don’t have enough professional practitioners out there,” Cheng said. “The more intervention we can offer the child, the better.”
dr Tina Taylor, associate dean at the McKay School of Education and a co-author of the study, said interventions are most effective while children with autism are young. She compared early intervention to compound interest.
“If you invest early, the impact of that early investment will offset over time. So it’s a similar analogy. Invest in a child’s education, training and learning early on, and over time you will see greater benefits than if you waited,” Taylor said.
One of the biggest barriers to parent-led intervention, Taylor said, is awareness. She said some parents don’t know their child has autism spectrum disorder until they are much older; and parents who get it at a young age often don’t know where to go for professional, individual training. Taylor said this is especially true for minority and rural communities.
Cheng understands how frustrating it can be for parents when they don’t know how to help their children. She said it should be standard practice for physicians and primary care physicians to connect patients to high-quality, individualized intervention training as early as possible.
Smith agrees with this opinion. “When parents have a child with autism spectrum disorder, they don’t know what they don’t know,” Smith said. “This is where targeted parent training information can fill a need that isn’t currently being met.” The more information parents have, the better off their children are, he said.
A parent-initiated intervention is not a substitute for professional intervention. Rather, Cheng said, it is designed to complement support from trained professionals and give parents the tools to address problems as they arise in daily life.
“We’re not saying that parents do it better than professionals. What we’re saying is parents do it, and they do it well,” Taylor said.
When asked if she would welcome this type of professional training, Harmer said, “I would definitely appreciate it. We really had no background on this disorder before our daughter was diagnosed, so having someone to hold my hand would have been super helpful.”
Enabling parents to intervene more effectively and earlier also has economic implications. Investing in early intervention programs, particularly parent-initiated interventions, could help children with autism better integrate into the school system, the workforce, and even independent living, Smith said. But, he clarified, “even more important than the dollar amount is the life potential lost — or gained.”
Smith said he believes people with autism spectrum disorders have a lot to offer to society. He said helping them interact also means helping them contribute. “Our society is losing the depth of perspective that people with autism spectrum disorders can and must provide if we are to truly thrive as a society,” Smith continued.
Parents like Harmer are willing to use any resources available to help their children reach their full potential. She said: “We absolutely adore our daughter. We try to give her the resources – and us the resources – to know how best to help her grow, develop and thrive. She has been an absolute blessing to our family.”