Dr. Scott Faber talks about the plan for an environmental pediatric room at the Children's Institute in Squirrel Hill.
By Timothy McNulty Pittsburgh Post-Gazette
With childhood autism cases skyrocketing and no cure in sight, doctors at the Children's Institute in Squirrel Hill are planning on a Hail Mary pass approach to the mysterious disorder -- housing young patients for weeks at a time in a pollutant-free "clean room," in an attempt to detoxify their bodies.
No cause for autism has been found, and debates rage as to whether the brain development disorder is purely genetic or caused in part by environmental factors, including air and food-borne chemicals.
With roots in autism treatment theories that until now have lived mostly on the Internet, the pediatric clean room plan would be the first of its kind in a mainstream American hospital environment.
The Children Institute's Scott Faber, a pediatrician with several hundred autistic patients and a waiting list six months long, is one of the believers in toxic causes, and the institute is trying to back him with a multimillion dollar test of the novel theory.
Under the plans -- developed with help from Duquesne University -- autistic patients would live for more than six weeks in a 1,000-square-foot room kept mostly free of harmful chemicals and pollutants, using special air-filtering systems, ultraviolet lights and air locks on doorways.
Furniture, paints, toys and floor coverings would be designed to be toxin-free, and food, clothing and water organic and clean. Doctors would seek to rid patients' bodies of chemicals and boost their immune systems through natural means such as nutritional supplements and dietary changes.
Basically, it would be pushing a "reset" button on the child's body, with the hope of wiping autistic symptoms away.
"What we would like to do is have kids live in this wonderful environment where they are exposed to almost none of the Industrial Revolution. And we wonder, if the chemicals come out and the heavy metals come out, will the children start improving?" Dr. Faber said.
"Will they start showing signs of clinical improvement, such as language improvement and socialization improvement? Will they become less obsessive? Less fascinated?"
Autism is one of a group of developmental disabilities disorders that cause substantial impairments in social interaction and communication and are characterized by unusual behaviors and interests. Many people with these disorders also have unusual ways of learning, paying attention and reacting to sensation. Rates have greatly increased in recent years, according to the U.S. Centers for Disease Control and Prevention, though some of the rise may be due to changes in reporting and diagnosing the disorder.
Planning and fund-raising for the "Environmental Pediatric Room" is in the early stages, with the Alcoa Foundation awarding an initial $200,000 grant April 28. It will require an estimated $500,000 to fully design and at least $1 million in yearly operating support its first three years.
The 106-year-old Children's Institute (formerly called the Rehabilitation Institute) plans to fund the room through the $30 million capital campaign it launched in 2005, after buying out its Shady Avenue site from the University of Pittsburgh Medical Center. It completed an expansion last year that doubled its building space and its capacity, from 39 to 82 beds. Almost $24 million of the campaign total has been raised, with fund-raising for the clean room and other programs ongoing.
A fringe movement
Clean rooms are common in high-tech manufacturing and research environments and have been used in hospital settings for patients struggling with infectious diseases and transplants. They have also been used to treat children with autism, but only in patients' homes, largely in work by Virginia researcher and nutritionist Karen Slimak.
Dr. Faber noted that Ms. Slimak's clean room work -- like much of the research on toxicity in autism -- "hasn't been written for the main [scientific] literature" but instead has been written mostly for the Internet. The Children's Institute plan would be taking what is arguably a fringe movement into the mainstream: It would be the first autism treatment of this kind staged in an American hospital setting. It will be matched with scientific analysis, sensors and video cameras to study the real impacts of detoxification. The data and findings will be shared openly, he said.
With so many doubts -- and so few answers -- about effective autism treatments among the growing community of families affected by the condition, the institute said openness is vital to the experimental method's success.
"We're not saying this is the full cause" of autism and related illnesses, Dr. Faber said. "Obviously there are multiple causes, and there are going to be found many genetic causes, many environmental causes and many genetic-environmental interactions. But we wonder -- we speculate -- that it's possible if we have children living in a unique environment that has not [previously] been created scientifically that we can make a difference.
"We want to have it be very transparent to the world what we're doing. We want this to be basically an intellectual exercise that's shared with everyone."
Educational, physical, speech and behavioral therapies have long been the traditional treatments for autism, but a growing number of families and researchers have called for further biomedical treatments as well, suspecting there is a chemical side to the disorder.
(One of the biomedical treatments -- which is not accepted by mainstream medicine, including the Children's Institute -- is removing heavy metals from the bloodstream through a process called chelation. An autistic boy died in Butler County after a chelation treatment in 2005. Authorities filed criminal charges but dropped them last week, saying they were not sure of a conviction.)
Families often say their environmental suspicions about the disorder aren't taken seriously.
"I can give you a detailed account of how I know that exposure to toxic mold has caused my son's autism. I have been saying it for years and no one believes me. They think I am crazy, even a [Defeat Autism Now doctor] we once saw," said a message posted by a parent on the AutismWeb.com bulletin board in March
Parents "research anything they can get their hands on and there are so many things saying 'Try this or try that' that aren't necessarily safe. It's a frightening thing," said Kim Aburachis, of Peters, who has twin 10-year-old boys, Nathan and Tyler, with severe cases of autism. Her boys have seen Dr. Faber for more than seven years and are likely to take part in the clean room treatment.
"We're so excited, so enthusiastic, just for the hope of this," she said.
Elliot Frank, the chairman of Pittsburgh's Advisory Board on Autism and Related Disorders, said the proposed clean room should not raise any red flags. Even if it does not work, patients will be in a safe and professional environment, benefiting from passive treatments such as nutrition and clean air.
Among parents of children with autism, Mr. Frank said, "some will say, 'Come on, who are you kidding?' But a significant portion of parents will feel good about this and watch this with incredible interest. Others will watch and say, 'Hmm, let's see what happens.' "
Long time in coming
Dr. Faber, 49, is a neurodevelopmental and developmental behavioral pediatrician with 24 years in the field, who came to the institute four years ago from Mercy Hospital. He has been working on the clean room concept for at least two years, alongside Duquesne University chemistry professor and environmental expert Skip Kingston.
He has been trying to build the scientific case that environmental factors such as toxic chemicals do trigger autistic symptoms. His findings are complicated, but basically blood tests show 70 percent of his autistic patients have zinc deficiencies (pointing to problems with processing heavy metals), and the vast majority also have immune system problems of varying kinds.
"We know that the data for this is just emerging, but we feel it's a very safe intervention, and it's empowering for families and very reasonable," he said.
The room would house only one patient at a time and be similar to other spaces at the institute's Center for Autism, with educational and play spaces, and a table for dining. Medical staff, teachers and family would have regular access to the room through an air-locked entrance, and another air lock would separate the room from a kitchen and laundry area. There will be a small bedroom for the child and a couch for a family member to stay overnight.
A place like home
Traditional therapies would continue during the patient's stay. But by exposing children to a clean atmosphere and toxic-free diet, doctors will also try to slowly release chemicals from the children's bodies, through their skin, urine and stool. In the meantime they will be living in a space that is anything but hospital or scientific-feeling.
"To parents and children it's going to be the opposite of a sterile environment. It's going to be home," Dr. Faber said. "If it's not beautiful and it isn't nurturant, it doesn't fit our research plans."
At the outset, patients would be only the sickest children, who have not responded to other treatments. They would stay six to 12 weeks, allowing an estimated four to six children to be treated per year. (Twenty families have already expressed interest.) After leaving, spaces at each patient's home would be equipped with lower-level clean technology, such as ultraviolet lights and air filters, and children would continue with special diets.
A six-week stay is not uncommon at Children's Institute, said president and chief executive officer David Miles, as patients with traumatic brain injuries, often from car or bike accidents, can stay for months at a time. The average stay in its acute care unit is 23 days.
Still, he said the room poses some unique challenges.
"Talking to architects, the technology to create the room is out there. It's not really a problem," Mr. Miles said. "It's really what you put in the room that is an issue."
Equipment and gear for use in industrial clean rooms are easy to find, but educational materials, toys and normal-looking furniture are not. Most will have to be fabricated from scratch, using the help of students at Duquesne's Bayer School of Natural and Environmental Sciences and other research teams. The institute also has to start from scratch on government permits, insurance issues and other red tape.
Fund-raising is the most obvious challenge facing the proposal. There is also the worry of raising expectations too high.
"We want to explore this hypothesis thoroughly," Dr. Faber said. "But we can't promise we'll make any biologic difference or any kind of physiologic difference. What we want to do is to create a loving, nurturant environment where the kids are a gift to us and we're a gift to them, and it all works very nicely."