CHOP Researchers Find Gaps in Knowledge, Communication about ASD Treatment Choices

Parents of young children diagnosed with autism spectrum disorder (ASD) may experience significant difficulties in discussing treatment options with the child’s pediatrician, according to new research. Among the barriers are problems with communication, physicians’ lack of knowledge about specific ASD treatments and community resources, and uncertainty about the pediatrician’s role in making treatment recommendations for a child with ASD.

Many parents in the study reported that they did not discuss the choice of any treatment options with their pediatricians, and others said their physicians provided only general recommendations or referrals. The study team suggests that tools such as decision aids and practice guidelines may help foster more effective communication between families and pediatricians.

As the population of people diagnosed with autism spectrum disorder keeps growing, so does the number of people with that diagnosis who aren't finding employment.

Though many young adults on the spectrum are considered high functioning, recent research shows 40 percent don't find work — a higher jobless rate than people with other developmental disabilities experience.

By Christina A. Samuels

After years of steady decline, the nationwide count of school-age students covered under the Individuals with Disabilities Education Act has shown an upswing since the 2011-12 school year based on the most recently available federal data, driven by rapid growth in such disability categories as autism.

The count of students ages 6-21 with disabilities fell to a low of 5.67 million in fall 2011, but had risen to 5.83 million by fall 2014, the most recent year for which statistics are available.

Sarah C. Bauer, Jessica Winegar, Sandra Waxman

Behaviors that are considered red flags in the U.S. and Western Europe are considered normal, even desirable, in other parts of the world

How do we determine who has autism, and is this the same around the world?

BY ANN GRISWOLD  /  1 APRIL 2016

Roughly 7 percent of children with autism eventually lose their diagnosis, swapping social problems and language difficulties for more typical skills and behaviors. But it is unclear whether this transition is associated with a return to typical brain function or reflects a compensatory process.

Terms like “low-functioning” are short on nuance and long on stigma.

It’s clear that Alex and John each function well in certain areas of life and struggle in others; each has an idiosyncratic patchwork of skills and challenges. Their stories illustrate a problem that has plagued autism research for decades: What, exactly, do the terms high- and low-functioning mean and to whom do they apply?

Left to languish in psychiatric institutions or drugged for disorders they never had, many older adults with autism were neglected or forgotten for decades. Efforts to help them are finally underway.

Teams of reporters are cornering candidates in Iowa and New Hampshire, and pressing them to pay attention to issues that are often ignored.

Hot on the heels of Silberman's Neurotribes book, the recent publication of In a different key: the story of autism by journalists John Donvan and Caren Zucker has book reviews in high profile journals. For example, see