When Stephen Wise began crying uncontrollably in the days -- then weeks and months -- following birth, doctors assured his parents that the problem was an ear infection and prescribed antibiotics as the remedy.
But the crying persisted. And soon, Stephen began displaying signs of deafness, lack of speech development and anti-social behavior, including not acknowledging his sister's presence. Stephen's mother, Sonia Wise, again sought explanations from doctors near their home in King's Creek, Ky., a rural community in the heart of notoriously isolated and impoverished Appalachia.
"All we got were pats on the back and comforts of 'He'll be fine,'" she says. By the time Stephen was 3, the Wise family realized the boy was autistic and were working with a speech therapist and a physical therapist. Though these regimens were designed to improve the outward signals of autism in Stephen, the 33-year-old Sonia worried more about his mental state and her and her husband's relationship to him. "All we knew about him was that he lived completely in his own little world," she says.
The tide turned when Stephen's speech therapist handed the Wises a copy of Son-Rise: The Miracle Continues, a book detailing the practices and philosophies of The Son-Rise Program, an initiative housed in the Massachusetts-based Autism Treatment Center of America. The program is centered on parents bonding with their autistic children by entering their child's "own little world" to develop relationships that eventually help bring about improvement. The Son-Rise Program embodies a movement in the medical community that does not accept autism as untreatable, and believes that the best results stem from combining several therapies in a holistic approach, with parents and positive attitudes as its cornerstones.
For the Wise family, it worked.
"At first, all we had to go on was the book," Sonia says. "We read it and began working with the program. We noticed that it was reaching him more than anything ever had. Him making eye contact and his little smiles let you know he heard you."
Sonia, a stay-at-home mom, and her husband, a security guard, were encouraged enough to plan a journey to Massachusetts, a trip eventually made possible in June 2001 after months of fundraising and scholarships made available through the center. After a week of training, consultations, networking and seminars, the Wise family returned to Kentucky and began to fully implement the Son-Rise Program with Stephen in July.
"Everything in Son-Rise is easy to start," Sonia says. "The most productive thing is starting to watch the attitude you have when you are dealing with them, because they pick up on any sentiment. We had to convince ourselves to go in there and be positive. Attitude is the whole key, because it is what makes the child want to be with you. I observed him, learned to enjoy him and what he likes to do and build from that."
Combining the Son-Rise Program with continued visits with speech and physical therapists, Stephen this year is taking regular classes at his school. The only visible signs of his autism are a slight speech delay and low muscle tone in his legs. His therapists expect those problems to be corrected within a year.
Stephen Wise's story resonates with Raun Kaufman. As a child in the 1970s, Kaufman was diagnosed as severely autistic. His IQ was deemed to be less than 30 and he was mute. His parents were advised by doctors to institutionalize him "because that's the way he's going to be for the rest of his life," says Kaufman, an Ivy League school graduate with a near-genius IQ and currently a teacher at The Autism Treatment Center of America.
When Kaufman's parents, Barry Neil and Samahria Lyte Kaufman, rejected the doctors' suggestion that Raun's condition was "incurable," they set out on their own.
"My parents created a home-based program, then worked with me for over three years," Kaufman says. "From that, I emerged with no symptoms of autism. I was a verbal, active kid from then on."
The Kaufmans' success story soon spread and then exploded in 1979 when NBC aired the made-for-TV movie, Son Rise: A Miracle of Love. An estimated 300 million people watched the show, and people soon began coming from all over the world to seek the Kaufmans' help, which led to their formation of the Autism Treatment Center of America in 1983. Since then, the center has worked directly with 2,000 autistic children at its Massachusetts headquarters, with countless others benefiting from the book.
The Kaufmans' achievements with Raun also supported the over-arching belief of the Son-Rise Program: that parents and the home are the center of therapy and development.
"One of the things we find is that parents' opinions are often dismissed and not listened to," Kaufman explains. "But they are the ultimate source because they are with the child day-to-day and have the life-long commitment. That's the bottom line."
Beyond that, Kaufman says Son-Rise is defined by "lots of nitty-gritty principles."
"The first thing we do is the most controversial step in our program," he says. "We actually join these children in their very repetitive, anti-social behaviors. If the child is sitting flapping their hands, don't make them stop. Rather, sit down and flap your hands with them."
Kaufman says critics point to this tactic as reinforcing a behavior parents should be trying to curb. But he adds that this is the bonding point: rather than forcing children to conform to a world they don't understand, join them in their world. This step is used to build more of a relationship, so the child will connect and pay more attention in the hopes he can eventually be taught how to learn.
This technique represents the philosophy that Kaufman says can encapsulate the Son-Rise Program: "The children show us the way in so we can show them the way out."
Another key component is the creation of a distraction-free playroom in which a child can learn in a one-on-one environment.
"These playrooms are designed to optimize the child's learning by reducing distractions and putting them in control and making them comfortable," Kaufman says. He describes the ideal playroom as having nothing on the wall but a coat of pastel-colored paint and a toy shelf built beyond the child's reach so communication can be established through the child's need to obtain the toy.
Son-Rise also teaches parents to recruit a team of "facilitators," individuals who can engage the child in one-on-one activities with the dual benefit of exposing the child to others and helping relieve the parents. The program provides morale support by allowing parents across the country to share their experiences and emotions through such technological advances as video conferencing and message boards on its Web site, www.son-rise.org.
"Parents are the ones doing this and who have done this," Kaufman says. "They tend to be very supportive and tend to communicate very well. The benefit is that the more on-going support parents have, the easier time they will have sticking to it.
"All of our principles spring from a foundational attitude that we really try to encourage parents and professionals to maximize interaction with children and remain really comfortable with an optimistic attitude," Kaufman says. "Boundless optimism is necessary because if a parent has preconceived notions about what their child must learn, like speaking before age 7, then they've already decided this isn't possible anyway."
When asked if the Son-Rise Program is controversial in the medical community, Kaufman gives an immediate response. "The short answer is yes. Yes, it's controversial in the sense that some are very supportive, others are less supportive. There are lots of misconceptions about how Son-Rise works."
One misconception, Kaufman says, is that Son-Rise advertises itself as the cure for autism. "There are huge biological aspects to autism. We encourage parents to do supplementary things, like giving their child a gluten-free diet. Practical techniques and positive attitude -- these kids need that combination.
"Also, we don't guarantee all children in the Son-Rise program will turn out a success. That's promoting false hope. And as there are no guarantees, we teach parents to be at peace with where their child is. We certainly don't want parents to decide in advance what these children can and can't do."
"I've never heard of it," Dr. Stephanie Cave, a Baton Rouge-based specialist with a practice currently treating 1,500 autistic children, says of the Son-Rise Program. A nationally recognized expert on autism who has testified about the condition before Congress, Cave's lack of familiarity with Son-Rise illustrates the myriad therapies now employed to treat autism that often share the Kaufmans' basic philosophy.
Author of What Your Doctor May Not Tell You About Children's Vaccinations, Cave has gathered figures that detail a dramatic increase in the rate of children diagnosed as autistic, leading her to conclude that the disorder has "reached epidemic proportion." She cites the incidence of autism in the 1960s was one child out of every 20,000, and in 2000 it was 1 in 200. Caves states the controversial view that vaccines "appear to play a key role in the dramatic increase in the number of (autism) cases among vaccinated children." According to Caves, by the end of the 1990s the average American child "was receiving a total of 33 doses of 10 different vaccines by the time he or she was 5 or 6 years old." The schedule begins with a hepatitis B shot at birth, followed by the combined measles-mumps-rubella vaccine (MMR) at 12 to 15 months and ending with DTP/DTaP and polio vaccination around age 4 or 5. Caves cites the presence of mercury and aluminum in these vaccinations as a possible cause of autism.
Before children are treated for autism at Cave's Baton Rouge office, their biochemical profile is determined with a full neurological examination conducted by a pediatric neurologist and their hair and blood is analyzed for toxic metals. The hair analysis in autistic children, Caves writes in her book, "usually shows several toxic metals, including mercury, aluminum, lead and tin."
To treat autism, Cave uses a detoxifying drug, DSMA, to remove lead, a process that takes several months because DSMA is given in small doses several times a week. During this process, the child also takes Epsom salt baths, which contain magnesium and sulfate to help the liver in the detoxification process. Because DSMA removes nutrients from the child's body, Caves' office supplements their diet with B vitamins, vitamin A and various minerals and amino acids. The children are also placed in a diet free of the dairy product casein and of gluten, a substance found in wheat, barley and rye. The treatment is rounded out with speech therapy, behavior modification and physical therapy for the children.
"The results have been incredible," says Cave. Adding that the prognosis for autistic children depends on a child's age at the time of treatment, "with the children between 2 and 4, we're turning it around to a point where there are no signs of autism in 6 to 8 months." Her approach of using DSMA will be tried in New Orleans in the coming months because of a recently funded study being conducted though Tulane's School of Medicine and its pediatric epidemiology department.
Despite obvious differences in approach from the Son-Rise Program, Caves agrees with its sentiment that parents should be a focal point and multiple treatments should be employed to maximize success.
"We've learned more from parents than we have from any doctor," says Cave. "I encourage all parents to work with parental support groups, as that's key to helping them learn what techniques have worked for other parents.
"All these programs combating autism have value. We need a team effort to defeat this disorder, because we know now that it can be defeated. We know now that a child can be restored through treatment."
- Raun Kaufman's mother interacted with her severely autistic son in distraction-free spaces, here a bathroom.
- Raun Kaufman developed from a mute, autistic youngster with an IQ of less than 30 in the 1970s to an Ivy League school alum and teacher with an IQ rated as near-genius.