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Parents in the United States tend to rate their children’s autism features as more severe than do parents in four other countries, according to a new survey1. The work is one of the first attempts to zero in on how parents from different cultures perceive the condition.
One culture’s autism ‘hallmarks’ may be seen as nothing unusual in another, says Rosa Hoekstra, lecturer in psychology at King’s College London, who was not involved in the study. “A better understanding of that is important, especially if we want to use screening measures cross-culturally,” she says.
But the findings could also reflect systematic differences among clinics or diagnostic tests in the different countries, says William Mandy, senior lecturer in clinical psychology at University College London, who was not involved in the work.
The study included a mix of public and private clinics, which might attract different sets of people. The diagnostic tests used also varied. “The groups differ, but you don’t quite know what variable accounts for that difference,” Mandy says. “They’re not really able to tease that stuff apart.”
The researchers asked clinicians in the U.S. and in four other countries to use the Baby Infant Screen for Children with aUtIsm Traits (BISCUIT) as part of evaluating children for autism. The BISCUIT is a parent survey designed to screen for autism in children aged 17 to 37 months. (Johnny Matson, the researcher who led the work, was not available to discuss the study, which appeared 14 February in European Psychiatry. His wife, Deann Matson, holds the rights to the test.)
BISCUIT assesses three classes of autism features: social behavior and nonverbal communication; repetitive behaviors and restricted interests; and language.
“Screens for autism largely rely upon caregiver report of symptoms, which are likely to be influenced by a number of cultural factors, such as beliefs about appropriate development and behavior,” says Maya Matheis, a graduate student in Matson’s lab at Louisiana State University in Baton Rouge.
The researchers analyzed responses on the BISCUIT for 250 toddlers who wound up being diagnosed with autism. The group included 39 toddlers from Greece, 50 from Italy, 49 from Japan, 58 from Poland and 54 from the U.S. Parents completed the questionnaire before knowing their child’s diagnosis.
Children in the U.S. scored highest on the BISCUIT and those from Greece, the lowest. Less than 25 percent of parents in the U.S. said their child differs from his peers in intellectual ability, compared with nearly 70 percent of parents in Japan.
This finding suggests either that parents in Japan believe autism features reflect intellectual disability, or that a relatively high proportion of children assessed for autism in Japan turn out to also have intellectual disability.
Researchers could untangle these possibilities by objectively measuring the children’s intelligence as well as their autism features, Hoekstra says.
The test also revealed subtle differences in what parents from different countries say about their children’s repetitive behaviors and restricted interests.
Parents in Poland were most likely to report that their children have restricted interests, and U.S. parents were most apt to identify their children’s repetitive movements. Parents in Greece were most liable to say their children have unusual routines and rituals.
“Culture may play a larger role in influencing the degree to which restricted, repetitive behaviors are perceived as problematic compared to other symptoms related to autism,” Matheis says.
Efforts to adapt autism diagnostic tools to other cultures may need to take these disparate perceptions into account, the researchers say. They plan to survey more parents in each of the countries.