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January 9, 2011

Recovery from Autism

News by Topic: Health <http://today.uconn.edu/?cat=15> & Medicine, Research

<http://today.uconn.edu/?cat=26>

By: Colin Poitras

<http://today.uconn.edu/wp-content/uploads/2010/09/deb_fein_lg.jpg>

<p>Deborah Fein, Board of Trustees Distinguished Professor of Psychology.

Photo provided by Deobrah Fein</p>

Deborah Fein, Board of Trustees Distinguished Professor of Psychology and

Pediatrics. Photo provided by Deborah Fein

When Deborah Fein

<http://www.psychology.uconn.edu/people/Faculty/Fein/Fein.html> first met

" , " 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,

, who had a regressive form of autism

<http://www.nichd.nih.gov/health/topics/asd.cfm> 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, 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, 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. 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. "

<http://today.uconn.edu/wp-content/uploads/2010/09/autism_slide_lg.jpg>

<p>Theoretical curves showing child development with and without autism.</p>

The top curve shows the hypothetical development of a skill in a normal

(typical) child. The lowest curve shows the development of skills (for

example, expressive language) in an autistic child. The " recovered child "

starts by looking like the autistic child, then accelerates sharply and

reaches a normal level before leveling off. Graph supplied by Deborah Fein

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 <http://www.centerforautism.com/getting_started/aba.asp> 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 <http://www.theaacn.org/> 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

<http://www.nimh.nih.gov/index.shtml> and other sources to pursue her

analysis. Geraldine Dawson, chief science officer for the national advocacy

group Autism <http://www.autismspeaks.org/> 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 Robins <http://www2.gsu.edu/%7Ewwwpsy/robins.html> (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

<http://www.woodbinehouse.com/main.asp_Q_product_id_E_978-1-890627-61-4_A_.a

sp> .

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. "

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