Autism Recovery Study

Recovery from Autism

By: Colin Poitras, University of Connecticut 9/13/10

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’sToday 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 Healthand other sources to pursue her analysis. Geraldine Dawson, chief science officer for the national advocacy group Autism Speaksand 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.”

Leo participated in this study via Yale Child Study Center. Cool!

Gadolinium, The Metal Dye They Use For MRIs

FDA Acts to Restrict GE’s Omniscan MRI Drug, and Two Others

by Jeff Gerth ProPublica, Sep. 9, 2009 6:28 p.m.

Sept. 10: This post has been updated.

The U.S. Food and Drug Administration said today that GE Healthcare’s Omniscan and two other MRI drugs should not be used in patients with severely impaired kidneys because they risk developing a rare but potentially fatal disease.

The decision marks a turnabout for the FDA and brings U.S. labeling requirements for Omniscan and the other drugs more in line with those in Europe, where an association first surfaced between Omniscan and the disease, nephrogenic systemic fibrosis, or NSF.

It also comes as a setback to GE Healthcare, which argued against special FDA labeling for Omniscan, and which faces hundreds of lawsuits from patients who contracted NSF.

ProPublica reported last year on GE Healthcare’s efforts to defend Omniscan, and on the company’s attempt to muzzle a Danish radiologist who criticized the drug.

Magnevist, the market leader, sold by Bayer HealthCare, and Optimark, which is sold by Covidien, are also affected by the FDA’s announcement Thursday.

Covidien last year acted on its own to contraindicate use of Optimark for at-risk kidney patients. But GE and Bayer continued to assert that their drugs were no riskier than the other so-called contrast agents, which are used to make MRIs easier to read.

The FDA has approved seven such drugs for use in the United States.

GE Healthcare and Bayer issued statements Thursday emphasizing their continued concern about patient safety and pointing out that tens of millions of doses have been used as diagnostic tools without any adverse effects.

GE said it would update Omniscan’s label to reflect that the drug should not be administered to patients with severe kidney damage. Bayer said it would respond to the FDA’s action within 30 days.

The first link between contrast agents containing gadolinium, a heavy metal, and NSF, a crippling condition with potentially lethal complications, surfaced in 2006. The next year, the FDA recommended a “black box” warning for at-risk kidney patients.

The agency decided to treat all the drugs as a class, ignoring two of its own medical reviewers, who said Omniscan was associated with a disproportionately high share of NSF cases and wanted to ban its use in patients with severe kidney conditions.

Since 2007, all contrast drugs sold in the U.S. have carried the same warning on their labels. Regulators in Europe, by comparison, acted that year to contraindicate use of Omniscan, Magnevist and Optimark in patients with severe kidney disease.

Amid continuing concerns about safety last year, the FDAconvened two advisory panels in December to look at the issue again. The agency’s scientists had done further research and concluded that warning labels for the three drugs should be made sterner.

The panels recommended a ban on Optimark and Omniscan. But while some panel members also voiced concerns about Magnevist, there was a wide range of opinions about what to do and no consensus.

The FDA normally follows the recommendations of its advisory panels.

More than 110 million doses of Magnevist have been sold worldwide, according to Bayer; GE Healthcare says Omniscan, the nearest competitor, has been used more than 48 million times.

All the manufacturers deny that their drug causes NSF. Omniscan has been linked to more of the reported cases of the disease than any other drug and has been named in more lawsuits than the other drug companies.

Since the disclosure of the disease the market share of Omniscan has fallen by about one half and the percentage of a less risky drug, MultiHance, made by Bracco Diagnostics, has risen, according to FDA data presented last December.

In addition to banning the three drugs for some, the FDA urged better screening to discover at-risk patients before using any of the gadolinium-based agents, which are administered intravenously, and closer monitoring of patients for signs of NSF afterward.

NSF has not been reported in patients with healthy kidneys, the FDA said. The disease, marked by scaling, hardening and tightening of the skin, or red or dark patches, can also cause fibrosis of internal organs that may lead to death, the FDA said.

New reports of NSF have virtually disappeared thanks to heightened awareness about the condition.

Update: Covidien has issued a statement in response to the FDA's action.

I just read about this through the Lyme Induced Autism Group. This is so scary. Yet another thing to get out of our bodies. Anyone needing an MRI probably already has problems? Another thing conventional doctors know nothing about. Chelation has such a bad name these days. People suffering with all sorts of problems, all from THIS!