Recovery from autism
When Deborah Fein first met “Catherine,” the 13-month-old child was almost completely nonverbal. She avoided eye contact, did not respond to her name, and displayed little facial expression - all classic signs of autism, a complex developmental disease that affects 1 in 110 births in the United States.
Yet after five months of targeted intervention with a home-based therapist, Catherine, who had a regressive form of autism spectrum disorder, began recovering some of the communication and social skills she had lost. Fein, Board of Trustees Distinguished Professor of Psychology and Pediatrics at UConn, was intrigued.
By age three, Catherine was doing well enough to enroll in a private preschool for typically developing children where, with additional support, she continued to progress. By age five, Catherine was enrolled in a public school kindergarten with no autism diagnosis, no individualized education plan, and no ongoing specialized interventions of any kind.
Now, years later, Fein’s research into recovery from autism has brought her international attention and offered hope to thousands of parents around the globe. Catherine remains a subject in one of Fein’s ongoing studies and is one of many formerly autistic children who, Fein says, are now living typical lives with no significant impairments.
“They are doing just great. They are not having any major behavioral issues,” says Fein, whose work has been featured on NBC’s Today Show and in The New York Times and TIME magazine. “Their cognitive functioning is good. Their academics are excellent. Their reading comprehension is mostly above grade level. Their math is terrific, their memory is terrific, and their language is terrific."
Based on her research, Fein believes that at least 10 percent, and possibly as many as 20 percent, of children who receive a diagnosis of autism or autism spectrum disorder can “recover” from it if they are provided the right kind of intensive behavioral therapy.
Fein cautions that not all children achieve the same degree of progress from the treatment, which can take years and which professionals refer to as Applied Behavior Analysis (ABA). In fact, she says, most children with autism will remain autistic despite therapists’ and parents’ best efforts. But in looking at a group of 20 “recovered” children between the ages of 9 and 18 who were once diagnosed with autism, Fein says she recognized a pattern.
“Almost all of the kids in recovery received intense behavioral intervention and they tended to be diagnosed with autism earlier, almost a year earlier,” says Fein, a certified clinical neuropsychologist and former board member of the American Academy of Clinical Neuropsychology. “A higher percent of the recovered group also received more than 20 hours a week of intense behavioral intervention compared with the comparison group of kids with autism who have not recovered.”
Fein arrived at UConn in 1976 and has since received more than $15 million in research grants from the National Institute of Mental Health and other sources to pursue her analysis. Geraldine Dawson, chief science officer for the national advocacy group Autism Speaks and a research professor of psychiatry at the University of North Carolina at Chapel Hill, calls Fein a leader in her field.
“Dr. Fein has been a true leader in the field of autism research,” says Dawson. “She helped develop the most widely used screener for autism in toddlers. More recently, she was the first to validate that children with autism can lose their diagnosis. In both of these areas, as well as others, Dr. Fein’s work has been very influential in shaping the field.”
Fein says that the children most likely to see improvement from Applied Behavior Analysis are those with generally milder symptoms and higher IQs who are diagnosed early. She also says that those who have recovered from autism tend to have some “residual psychiatric vulnerability” that may include depression, anxiety, phobias, and tics, although the tics usually subside by late adolescence.
Currently, Fein is working with other specialists in analyzing brain scans of the individuals in her study to see whether the size, structure, and networks of the brains of the recovered children look like those of children with typical development or the brains of those with autism.
“Most professionals still think that autistic kids cannot recover,” says Fein. “But the parents, they know they had an autistic kid and now they know this kid is doing great, so that is validation. Here is a national researcher who is demonstrating that what they know to be true is true.”
Fein is a highly respected researcher who, along with former graduate student Diana Robins (now a researcher at Georgia State University), modified an early detection “checklist” for autism that has become the most widely used screening method around the world and has been published in 25 languages. Fein and her research team are currently working on revising the checklist from 23 questions to 10, to simplify the process and make it more accessible for parents.
Fein says she’s been fascinated with autism since she first worked with children with the disability in the early 1970s.
“They are just endlessly fascinating, because their behavior is both inexplicable and in some ways consistent from kid to kid,” she says. “Every year, the field gets more confusing at higher and higher levels. Thirty years ago, autism was thought not to be a genetic illness. Now it is considered one of the most heritable of all the psychiatric illnesses. Yet when you try to pin down what the genetics are, it’s as confusing as any illness. It’s a tangled mess. There’s hardly a segment of the chromosome that hasn’t been implicated, yet the findings have been inconsistent from study to study.”
In addition to her research, Fein teaches undergraduate and graduate courses in neuropsychology at UConn, and is editing a volume on the neuropsychology of autism for Oxford University Press. In 2007, she published a book on autism for teachers.
Looking back, Fein says that despite all the unknowns, there have been significant advances in the diagnosis and treatment of autism.
“Things are much better,” she says. “Many more kids are having better outcomes. Even kids who are very limited, their behavior is under better control and their parents have a much better idea of what to expect. When I used to go out 30 years ago with a kid with a physical disability or autism, people would stare. One woman followed us around crying. People are much more understanding today. Public awareness has really increased.”