Recent research by BYU has shown that children with autism spectrum disorder are more likely to succeed if their parents can intervene at home.
The study included over 50 randomized control studies from around the world, as well as nine studies from non English-speaking countries. It took the researchers approximately a year for them to go through all of the available literature.
“What was surprising was that the results were so consistent,” Dr. Tim Smith, a co-author of the research, said. His research showed that parents can help autistic children regardless of their identity or the type or method of intervention.
“It’s not what you do, it’s that you do,” Smith said. “As long as you intervene, the children benefit.”
BYU master’s student Wai Man (Linda) Cheng was the lead author of this study. The paper grew out of her master’s thesis, which was inspired by the time she spent with autistic children in China. She stated that she hopes her research will empower parents of autistic kids to receive the training they need.
Finding professional treatment can be difficult—and expensive. The median annual cost to treat an autistic child by a family is $34,000, according to studies. Others are more optimistic, with lifetime costs exceeding $3 million.
Stacy Harmer, a mother to an adopted 6-year-old girl, is called Stacy Harmer. Harmer and her family were unaware that Harmer’s daughter was diagnosed with autism spectrum disorder when she first came into their lives.
Harmer claimed that she has tried many types of therapy. Harmer said she has tried occupational therapy, speech and applied behavioral analysis therapy. She also ordered a lot of books about autism. She said that many of the treatments have waitlists.
“It’s not always easy on a day-in, day-out basis, but I try to learn as much as I possibly can to help her unique situation,” Harmer said. “We just keep trying every single day.”
Cheng believes that professional practitioners may only provide one-on-one intensive sessions once a week.
“We cannot solely rely on practitioners to give the hours that the children need. It’s just impossible. We don’t have enough professional practitioners out there,” Cheng said. “The more intervention we can provide the child, the better.”
Tina Taylor, an assistant dean at McKay School of Education, and co-author of this study, stated that interventions work best when children with autism are young. She likened early intervention to compounding interests.
“If you invest early, the effects of that early investment compound over time. So it’s a similar analogy. Invest early in a child’s education, training and learning, and over time you will see greater benefits than had you waited,” said Taylor.
Taylor stated that ignorance is one of the major obstacles to parent-led intervention. She said some parents do not know their child has autism spectrum disorder until they are much older; and parents that do catch it young often don’t know where to go to get professional, individualized training. Taylor stated that this is particularly true for rural and minority communities.
Cheng is aware of how frustrating it can be to parents to not know how they can help their children. Cheng stated that it should be a standard procedure for family doctors to connect patients to high quality, personalized intervention training as soon as possible.
Smith shares that sentiment. “When a parent has a child with autism spectrum disorder, they don’t know what they don’t know,” Smith said. “That’s where specific information about parenting training can absolutely meet a need that is not presently being filled.” The more information parents have, the better off their children will be, he said.
Professional intervention cannot be replaced by parent-initiated interventions. Cheng explained that parent-initiated intervention is not meant to replace professional intervention. Instead, it will give parents the tools they need to address problems as they arise in daily life.
“We aren’t saying that parents do it better than professionals do. What we’re saying is parents do it, and they do it well” Taylor said.
When asked if she would welcome this sort of professional training, Harmer said, “I would definitely welcome that. We really didn’t have any background on this disorder before our daughter was diagnosed, so having someone to hold my hand would have been super helpful.”
It has economic consequences as well, allowing parents to intervene sooner and more effectively. Smith said that children with autism can be helped to integrate into schools, work and independent living by investing in early intervention programs. This includes parent-initiated programs. But, he clarified, “even more important than the dollar amount is the life potential that is lost—or gained.”
Smith stated that people with autism spectrum disorder can have a lot to offer society. Smith said that helping people with autism spectrum disorder interact means also helping them to contribute. “Our society is losing out on the depth of perspective that people with autism spectrum disorder can offer and must offer if we are really going to succeed as a society,” Smith continued.
Harmer and her parents are prepared to use all resources available in order to help their children reach the best possible level. She said, “We absolutely adore our daughter. We’re trying to give her the resources—and us the resources—to know how to best help her grow and develop and thrive. She’s been an absolute blessing to our family.”
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