When It Comes To Fragile X, Many Experts Don’t Have A Clue
It’s the leading cause of inherited intellectual disability and often co-occurs with autism, but a new study finds that many educators and therapists know little about fragile X syndrome.
Researchers surveyed 439 behavior therapists, psychologists, special educators and speech therapists working with children who have autism, nearly half of whom had experience with at least one child diagnosed with fragile X. Nonetheless, they found that such professionals are largely in the dark about the genetic disorder.
Less than 30 percent of those surveyed knew that fragile X is found in 1 in 20 kids with autism, according to the study published recently in the journal Intellectual and Developmental Disabilities. What’s more, just a quarter were aware that hand flapping and physical characteristics like prominent ears are common among boys with the condition.
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Although the majority of professionals recognized the importance of connecting parents with genetic testing resources, nearly three-quarters said they either rarely or never ask about the cause of a child’s disability when they start working with them. Meanwhile, many of those surveyed were unaware that a simple genetic test could determine whether or not a child has fragile X.
That’s troubling, researchers say, because educators and therapists are uniquely positioned to offer families advice about obtaining genetic testing, something that many children with autism are not undergoing. And, when the cause of a child’s condition is determined, they can receive more appropriate treatment and therapy.
“The survey results underscore the need for training and education so that professionals can become effective partners in diagnostic genetic referral as well as in research and implementation of syndrome-specific interventions,” wrote Brenda Finucane of the Autism and Developmental Medicine Institute at the Geisinger Health System and her colleagues in their findings.
Though the study looked specifically at fragile X, the researchers said that their findings suggest that those in the disability field may know little about other genetic conditions related to autism as well since fragile X is among the most common and well-researched.