NEW YORK — As autism diagnoses become increasingly common, health officials have wondered how many American children have relatively mild symptoms and how many have severe symptoms, such as very low intelligence and the inability to speak.
The first study of its kind, released Wednesday, shows that the rate of this type of “profound” autism is increasing, although more slowly than mild autism cases.
“It’s very important to know how many people have profound autism so that we can properly prepare for their needs,” said Alison Singer, executive director of the advocacy and research group Autism Science Foundation.
Singer—the mother of a 25-year-old woman with profound autism—co-authored paperpublished by the magazine public health report, Scientists from the Centers for Disease Control and Prevention led the research.
Although autism has been diagnosed for at least 80 years, the new study is the first to put a number on the portion of American children who have its most severe version. This comes less than two years after the International Commission of Autism Experts was established deep self-centered definition: Children with an IQ of 50 or less, and/or children who cannot communicate verbally.
Under that definition, nearly a quarter of American children diagnosed as having autism by age 8 fall into the profound category, the new study found. This means that more than 110,000 elementary school-age children in the US have profound autism.
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There are no blood or biological tests for autism. It is identified by making judgments about the child’s behaviour. Traditionally, it was diagnosed only in children with severe language difficulties, social impairment and abnormal repetitive behaviour. But gradually the definition expanded, and autism is now also an acronym for a group of mild, related conditions.
Researchers looked at school and medical records from 2000 to 2016 for more than 20,000 8-year-olds diagnosed with autism spectrum disorders.
They found that the rate of intensive diagnosis increased from about 3 cases per 1,000 children in 2000 to about 5 cases per 1,000 in 2016. ,
The researchers found that milder forms of autism were more common in boys and white children. Profound autism was more common in girls than boys.
A CDC study published last month found that black and Hispanic children are being diagnosed with autism more often than white children in the US, a change from previous years when white children were more likely to be diagnosed. Experts cite improved screening and services, and increased awareness and advocacy. The CDC estimates that in 2020, 1 in 36 8-year-olds had autism.
New research finds a large racial difference in severe autism. Among black children diagnosed with autism, 37% had severe autism. The same was true for about one-third of Hispanic children with autism and about one-fifth of white children with autism.
More research is needed to understand the reasons for those differences, said Michelle Hughes of the CDC, lead author of the study.
Singer said the study’s publication reflects a recognition by the CDC that “the diagnosis of autism spectrum disorder is overly broad and that people who are diagnosed have very different needs.” She said the data should help identify schooling and housing needs.
Jane Blecher, an autism researcher at the University of California at Riverside, voiced mixed feelings about the report.
He added that using an IQ of 50 as a definition of severe autism may be problematic. She has observed children with IQs above 70 who had symptoms associated with severe autism, such as spinning or meaningless repetition of words.
“It’s the symptoms of autism that make a difference,” she said.
They worry that children who don’t make the cut-off may not get the same attention and help as those who do.
“We have work to do on all levels of the continuum,” she said.
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