Spotted: Identity crisis; chemical restraint

Autism labels incite controversy, and a report exposes overmedication of people with autism.

By Rachel Nuwer
17 July 2015 | 5 min read
This article is more than five years old.
Neuroscience—and science in general—is constantly evolving, so older articles may contain information or theories that have been reevaluated since their original publication date.
  • What term most respectfully describes someone who has autism? Some government agencies, researchers and press outlets (including promote a person-first approach — that is, the use of ‘person with autism’ instead of ‘autistic person.’ Rather than define a person by his or her condition, the person-first approach is intended to emphasize his or her value as an individual, one who just happens to have autism.

    Yet this approach is highly controversial, according to a study published 1 July in Autism. The researchers asked nearly 3,500 people in the autism community in the U.K., including individuals with autism, their family members and friends, and professionals, about which term they use and why. Although professionals in the field preferred ‘person with autism,’ adults who have autism and their family members favored ‘autistic.’ Using ‘person with autism,’ many argued, separates the individual from his or her autism and implies that there is a ‘normal’ person underneath.

    As lead researcher Elizabeth Pellicano, a developmental cognitive scientist at University College London,wrote Monday on “There is no one way of describing autism on which everyone can agree.” Nor, she added, will there ever be. The best way to move forward, Pellicano wrote, seems to be to agree to disagree.

  • In the U.K., one in six adults with a learning disability or autism receives antipsychotic drugs meant for major mental illnesses. Of those individuals, half do not have a diagnosis that justifies use of the medication,according to a report published Tuesday by Public Health England, a governmental public health agency in the U.K. Likewise, the report found that more than 30 percent of people with autism or a learning disability who are prescribed antidepressants by their doctor had no clinical justification for being on those meds. The practice may affect up to 35,000 adults as well as some children.

    As Viv Cooper, chief executive of the Challenging Behavior Foundation, a nonprofit organization based in Chatham, U.K., told The Telegraph, “This confirms what we have heard from families time and time again.” The culture of “chemical restraint,” she continued, must be replaced with “individualized behavior support.” Health officials have promised to respond to the findings with “urgent action,” The Telegraph reported.

  • Diets free of the proteins gluten and casein are popular among parents of children with autism, especially those whose children also have gastrointestinal issues, seizures or behavioral problems. Yet there is little scientific evidence that a gluten- and casein-free diet alleviates autism symptoms. A study in the 4 July issue of Acta Paediatrica supports the naysayers, suggesting that gluten and casein do not affect how autism manifests in children.

    Researchers from the University of Indonesia and University of Brussels recruited 74 children with autism who had gastrointestinal issues and showed maladaptive behaviors such as aggression or resistance to change. They performed a randomized trial in which they gave half the children gluten-casein supplements in the form of biscuits and half the children placebo biscuits for seven days. Afterward, when they re-evaluated the children, they found no differences in behavior or gastrointestinal symptoms in either group.

  • “Daniel Tiger’s Neighborhood,” a children’s television show on PBS, stars a furry orange hero who, like a modern-day Mister Rogers, teaches life lessons ranging from taking turns to believing in yourself. Daniel Tiger also may be a helpful guide for some children with autism, according to Rasha Madkour, who described her son’s experience with the show on Sunday in The New York Times’ Motherlode blog.

    Daniel Tiger is a good role model for children with autism, Madkour wrote, because the character clearly explains each episode’s lesson and then repeatedly acts out examples of the behavior with animated friends. Although Madkour’s account is anecdotal, for her son, at least, Daniel Tiger is making a difference. In one case, Madkour’s son quoted a Daniel Tiger song lyric when trying to persuade his brother to share a toy — “You can take a turn, and then I’ll get it back.” In other instances, Daniel Tiger helps with bathroom issues (“If you have to go potty, stop and go right away!”) or winding down park visits (“It’s almost time to stop, so choose one more thing to do”).

    As Madkour wrote: “The show’s social-emotional lessons — the kind of thing school districts are paying millions to promote in specialized curriculums for all children — have been transformative.”

  • Limpsfield Grange in Surrey is the U.K.’s only state-funded boarding school for girls with special needs. On Tuesday, The Guardian lauded the school for its highly personalized approach toward its pupils, many of whom have autism. Instructors there specialize not only in students with autism, but specifically female ones. As The Guardian points out, girls with autism are more likely than boys to be misdiagnosed and, as a result, misunderstood. Their unique characteristics and needs make havens like Limpsfield Grange all the more vital.