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AnnArbor.com. In the picture, Elena Mirea, right, helps her son Robby, 2, who has autism, pull out Play-Doh from a container at the University of Michigan Autism Communication Disorders Center
The University of Michigan plans to close its decade-old autism center with the departure this fall of a renowned autism researcher who heads it.
Catherine Lord, who directs the University of Michigan Autism and Communication Disorders Center, said she is leaving to head the Institute for Brain Development, a new, joint effort between Columbia University Medical Center, Weill Cornell Medical College and New York-Presbyterian Hospital scheduled to open at the end of 2012.
Two grown children who live in New York City are driving her decision, Lord said.
But Lord — a Harvard-educated psychologist who has authored hundreds of peer-reviewed journal articles and more than 10 books about autism spectrum disorder — suggested that bureaucracy, territory and money may have strangled the original intent of UMACC: to integrate services across disciplines at an incredible place full of talent.
“I think it’s a very big place, and there are a lot of territories,” said Lord, who is also a U-M psychology professor. “And I think reality for the medical world is that autism is expensive. It doesn’t make money the way pediatric oncology or pediatric cardiology does.”
U-M will not fill the vacancy Lord is leaving, she said, and the school has been aware of her intention to part ways for a long time.
“I think they are going to close UMACC for a variety of bureaucratic reasons,” she said.
A U-M psychologist and a small number of researchers and staff will follow Lord to New York, she said. The researcher has brought in millions of dollars to U-M for autism research in the last decade.
U-M spokesperson Rick Fitzgerald confirmed Lord is leaving and the center will close after her departure.
"Catherine Lord's resignation will be a loss to the university of an outstanding researcher," he said.
Her departure will not impact two federally funded early intervention research projects that are ongoing: the Early Steps Study and the Early Social Interaction Project, which involve about 70 children and their families. Other services will be reshuffled to existing university or community resources or will no longer be offered at U-M.
Some Early Steps participants receive intensive behavioral treatment followed by two years of follow-up with an interventionist 20 hours per week. The program is free for study participants; an interventionist could cost a family as much as $50,000 a year.
It is no longer enrolling participants, but the Early Social Interaction Project — which trains parents on how to provide services to their children — is still enrolling participants through June, said Julie McCormick, project manager for early intervention services for UMACC, which is affiliated with U-M Rackham Graduate School.
Manchester resident Jennifer Lundberg’s two sons are autistic and each is enrolled in a UMACC study. For nearly two years, Hayden, 4, has received intensive treatment through Early Steps to help his development that her family could never have afforded, she said, because it is not covered by insurance.
In June, Hayden's participation with Early Steps will come to an end.
“I am devastated on so many levels, and every day I try to think of a way we could open up a school and put these talented people to work in a positive manner where their services can help other people,” she said of UMACC’s closing.
Lundberg and her husband, Donald, moved to Manchester from California because of UMACC services, she said. She said intensive therapies have helped her son.
“I think, in the last six months, they’ve identified what he needs to learn, and how intensely they need to teach him.”
He needs to be told over and over and over, to understand things like “this is a picture of shirt,” she said.
Staff members with the center and the study have been a text or call away when her son shows a new behavior that needs to be addressed — like screaming inside of stores.
With his participation in the study coming to a close, she said, she faces a void in affordable services that can help her son progress.
“This is a crucial age for them to learn in, and you want to put as much in front of them as they can to absorb during these early years,” she said.
Autism spectrum disorders affect one in every 110 children and one in every 70 boys, according to the U.S. Centers for Disease Control and Prevention. It’s estimated that 1 million to 1.5 million American adults and children live with an autism spectrum disorder, a condition marked by social, communication and behavioral challenges.
While at U-M, Lord had been working to create a diagnostic tool that would catch autism earlier in toddlers than the typical age of diagnosis, which is usually around 3 or 4 years old. Over the last few years, the center has had enough research funding to offer genetic and diagnostic services for free. Those kinds of services can often run about $2,500, Lord said.
“We believe that the earlier we can identify autism, the more we can work with families and other people involved in the child’s life and keep the child socially engaged and to help the child communicate,” she said.
She will continue her research in New York.
UMACC has been an excellent community resource and its closing will be a loss to the community, said Jeanne Brakhage, a parent liaison for the Washtenaw Intermediate School District.
The intermediate district works with local school districts and included 658 autistic children in 2010. Children within the district have been referred to UMACC-run studies over the years.
"A lot of excellent research has come out of the University of Michigan Autism and Communication Disorders Center, including tools for diagnosis and early intervention,” Brakhage said. “The center has also had support systems in place for individuals and groups. And, its director, Dr. Catherine Lord, is known throughout the United States — if not the world — as an expert in autistic spectrum disorders.”
Lord and two others started UMACC in 2001 after a campaign by faculty members and autism parents to then-provost Nancy Cantor pushed its creation forward, Lord said. Since that time it grew to a staff of 60 people who work together to research, evaluate and treat autism in individuals who range in age from infancy to adulthood. The center’s offices are at the Victor Vaughan Building, 1111 E. Catherine St. in Ann Arbor, while staff involved in ongoing studies work elsewhere on campus.
At any time, UMACC provides services for 300 to 400 people, Lord said.
Lord said the center has already started to slow down its offerings. It is referring some services, such as diagnostic evaluations, to other available resources in the community, such as the Autism Collaborative Center at Eastern Michigan University, which opened in 2009.
She called EMU’s center “a huge resource.”
U-M and the University of Michigan Health System offer services in the diagnosis and treatment of autism outside of UMACC, such as the pediatric genetics division at C.S. Mott Children’s Hospital and an autism spectrum disorders clinic offered within the child and adolescent psychiatry division of the U-M Department of Psychiatry.
Social groups for children and teens will be continued through the U-M Center for the Child and the Family. An adult social group is still looking for a new home.
Finding services for adults is challenging, Lord said.
“With adults, we haven’t found a group that really wants to take on adults with autism in terms of a specialty,” she said.
“I think our intention was to be not just a place for people came and got a one-stop diagnosis but that we could keep going across a lifetime,” Lord said. “For information and support. In that sense, we’ll leave a gap.”
According to a statement issued Friday from the University of Michigan Health System, various areas that offer autism services at U-M will begin to collaborate on a comprehensive, multidisciplinary program to evaluate children with autism following UMACC's closure. The move is being made to address confusion surrounding various points of entry for autism services at UMHS, according to the statement. The collaboration will begin in 2012 following the opening of the new C.S. Mott Children's Hospital.
