Parents of Autistic Children Report High Levels of Frustration with the Medical System
Two new analyses find that one in forty American children has an autism spectrum disorder. That continues the trend of steadily increasing estimates of the prevalence of autism. And these new studies also look at a facet of autism spectrum disorder that we’ve previously had little information about: the prevalence of treatment.
The new data from 2016 National Survey of Children’s Health show that about a third of children with ASD have not been receiving treatment. And parents of autistic children report high levels of frustration with the medical system.
Michael Kogan is director of the Office of Epidemiology and Research at the Health Resources and Services Administration, and lead author of one of the new analyses. He said that while the prevalence of autism spectrum disorder has increased, researchers do not know the reasons why.
The increase may be due to a number of factors: broadening the diagnostic criteria, increasing provider awareness and diagnosis at earlier ages, and births to older parents.
Kogan’s analysis not only looked at the prevalence of autism spectrum disorders, but it also looked at the prevalence of treatment.
They explored how parents of children with autism spectrum disorder compare to children who had other emotional behavioral developmental conditions. They noted their frustrations in the family, and the need for treatment.
The study found that nationally about 27 percent of parents reported that their child who had autism spectrum disorder was given medication to treat symptoms of irritability in the last year.
They also found that 64 percent of parents said their child who had a ASD were a given behavioral therapy in the prior 12 months.
“The parents of children with autism were much more likely to report there was a big problem to get specialist care when they needed it. They were much more likely to report that they did not get needed mental health care for their children,” Kogan said.
Among other issues, Kogan also found that these families face unique challenges when trying to access health care services.
“The parents of some children with autism were much more likely to report there was a big problem to get specialist care when they needed it,” Kogan said.
And the specialists are often where help is needed most. Prior studies have shown that about 83 percent of children with ASD have a co-occurrence of one or more non-autism spectrum disorder developmental diagnoses. Conditions like asthma, eczema, gastrointestinal disturbances, and seizures.
Rogan's study found that their number was closer to 90%, which could tie into why the level of frustration for parents of these children is so much.
Web content by Liz Lerner.