When she discusses her autistic clients, Marcella Piper-Terry almost always speaks in reverential and laudatory tones. “They’re just absolutely gorgeous children,” she says of kids with Asperger’s Disorder, such as her 15-year-old daughter Rachel. “Great big eyes, long eyelashes — amazing, beautiful children. And very smart, very creative and extremely sensitive. Extremely sensitive.”
Only when a two-hour interview in her rural, Southwest Indiana home turns to the notion that children with Autism Spectrum Disorders (ASDs) cannot be treated does Terry’s demeanor assume an edge.
“That is not true,” she says. “It’s unacceptable to write these kids off because standard medical practice says there is no medical treatment for autism.”
Terry understands that there are no cures for ASDs. But those who are diagnosed with social, behavioral and communication deficits on the autism spectrum can recover, she says. A common analogy is getting hit by a bus.
“You can’t be cured from being hit by a bus,” she says. “But you can recover. Some people, with the right treatment and the right therapy, can recover to the point where they may not have to walk with a cane anymore. Or they may not have to park in a handicap spot anymore.”
While there are rare reports of children who fully recover after exhibiting symptoms of autism — rigid, repetitive actions, avoiding eye contact when talking, fascination with spinning objects, for example — no one claims to know what causes autism or how to cure it.
“Though there is no single known cause or cure, autism is treatable,” the National Autism Society says on its Web site. “Children do not ‘outgrow’ autism, but studies show that early diagnosis and intervention can lead to significantly improved outcomes. With the right services and supports, people with autism can live full, healthy and meaningful lives.”
During an interview in the spring of 2009 at the Christian Sarkine Autism Treatment Center at Riley Hospital for Children in Indianapolis, Clinical Director Naomi Swiezy agreed and cited numerous science-based approaches that are effective at helping children with autism.
The Sarkine Center, the nation’s largest such facility, employs a combination of medication, behavioral therapy and intervention. Because the range of children on the autism spectrum runs from Autistic Disorder to Asperger’s, a multidisciplinary approach is needed, she said.
Autistic Disorder is sometimes called “full-blown autism,” and kids often need 24-hour, professional care. Those with Asperger’s, sometimes called “high-functioning autism,” can lead challenging but successful lives.
Among the therapies used at the Sarkine Center and other clinics around the nation are behavior-based approaches like Applied Behavior Analysis (ABA), Discreet Trial Training and Pivotal Response Therapy. These techniques encourage learning through incremental behavior modification.
Another is TEACCH, or Treatment and Education of Autistic and related Communication-handicapped CHildren. Developed at the University of North Carolina, TEACCH utilizes visual tools like pictures, cue cards and colors to enhance learning.
Speech and occupational therapies are also commonly used to treat children with ASDs.
The Food and Drug Administration has approved only one medication for treating autism, and that didn’t happen until 2006, Swiezy said. It’s called risperidone or Risperdal, and it’s used to treat symptoms of aggression and irritability.
Marcella “Marci” Terry bills herself as a “biomedical consultant,” which means she believes that some manifestations of autism and other developmental disorders can be ameliorated through “alternative” forms of treatment, like vitamins, enzymes, probiotics and other dietary changes and supplements.
Probiotics, according to the National Institutes of Health, “are live microorganisms (in most cases, bacteria) that are similar to beneficial microorganisms found in the human gut. They are also called ‘friendly bacteria’ or ‘good bacteria.'”
Terry doesn’t really like the term alternative. “It’s all about improving the body’s ability to absorb and use the nutrients and minerals needed to bring a state of balance that allows the system to heal and grow in a more effective way,” she wrote in an e-mail. “In many ways it boils down to two things: assimilation and elimination. Assimilation of good things and elimination of bad things (toxins). That, to me is very basic and there is nothing ‘alternative’ or ‘woo-woo’ about it.”
Terry is a practitioner of the treatment model called Defeat Autism Now!, which is a project of the 42-year-old Autism Research Institute.
No longer known as DAN! due to copyright issues, Defeat Autism Now!’s mission is summarized by Director Jane Johnson on its Web site. The project researches and educates parents and clinicians about “medical treatment and metabolic support sufficient to reduce physical pain and roadblocks in children with autism, to the extent that many are newly able to communicate and learn,” she writes.
Biomedical, Johnson continues, is but one of a multitude of treatment options that parents and health-care professionals have at their disposal. “Many therapies, including Applied Behavioral Analysis (ABA), occupational therapy (OT) and speech therapy (among others), help a child’s chances of improving, and in some cases recovering. But without addressing the physiological disorders and medical conditions that lie at the core of autistic disorders, little true or lasting progress or benefit can be expected.”
Promoting the biomedical approach, however, puts Defeat Autism Now! and Marci Terry in the crosshairs of the emotional national debate over autism.
A Nov. 22, 2009, investigative piece in the Chicago Tribune led readers to the conclusion that it’s quackery. The headlines: “Autism treatments: Risky alternative therapies have little basis in science; Alternative therapies amount to uncontrolled experimentation on children, investigation finds.”
The piece quoted Dr. Steven Goodman, a pediatrician and clinical trial expert at the Johns Hopkins Berman Institute of Bioethics: “They really should be seeing treatment of patients with unproven therapies as dangerous experimentation. The problem with uncontrolled experiments … is that it is experimentation from which we can learn nothing.”
Terry, however, has an arsenal of anecdotes and data that tell an entirely different story.
She agrees that medication is sometimes necessary, but she scoffs at the approach taken by many in the psychiatric profession. “Autism and ADHD are not the result of a deficiency of Ritalin,” she wrote in an e-mail. “Prescription drugs (psychoactives) should be reserved for the last resort — or in cases where the child is a danger to himself/herself or others.”
With an M.S. in psychology from the University of South Alabama, where she pursued both the clinical and experimental tracks, Terry cannot practice in Indiana unless she is under the direct supervision of a licensed mental health professional. From 2003 to 2006, she worked at the Cady Wellness Institute in Newburgh, Ind., under a “very progressive” psychiatrist named Dr. Louis Cady, and with Dr. Jeff Gray, a neuropsychologist, in 2007.
In April 2007 Terry attended her second Defeat Autism Now! Conference where she trained to become a DAN! provider. She rejoined the Cady Institute in August 2008, after Cady likewise took the training.
One of the catalysts for her decision to become a Defeat Autism Now! provider was a 13-year-old girl she saw during her first stint with Cady. The girl had been diagnosed with moderate mental retardation, autism and selective mutism, which meant she was capable of talking but chose not to. The first time Terry approached the girl, she almost caught a fist in the side of the head.
After several sessions and little progress, Terry told the girl’s mother that she didn’t believe she could help. But the mother was insistent. “I want my daughter back,” she said. “I know she’s in there, and I think you can find her.”
So Terry dug deeper into the 20-page developmental history form she has each child’s parents fill out. When she inquired about the girl’s “chronic constipation,” the mother said she sometimes went a month without a bowel movement. Terry recommended a “vitamin C flush” and digestive enzyme therapy and told her to come back in a month.
While in a meeting two weeks later, Cady told Terry: “The 13-year-old you were trying to test, mom called, she’s talking.” Within a few weeks, the girl was not just talking, she was scoring in the normal range on IQ tests.
“This child, who had been diagnosed by a licensed clinical psychologist, PhD level, who had been diagnosed as having moderate mental retardation, came out with an IQ of 80,” she says. “It’s right on the cusp, but it’s normal range of intelligence.”
Terry likewise bristles at the suggestion that mainstream science has a better grasp of what treatments do and do not work for treating the symptoms of autism. She pulls out the results of nearly 40 years of Autism Research Institute surveys from parents who scored the effectiveness of treatments tried on their autistic children.
As of 2007, 6,387 respondents had offered feedback on the use of Vitamin B6 and magnesium — 48 percent said the combination improved their children’s behavior, 48 percent said it showed no effect, and 4 percent said it got worse.
“The better-to-worse ratio was 11:1,” Terry says. “So 11 kids got better for every one that got worse.”
Yet, in 912 cases where children were given Risperdal, 54 percent got better, 27 percent showed no effect, and 19 percent got worse.
“The better to worse ratio was 2.9:1,” she says.
Another area that Terry often finds herself at odds with the medical and special education establishment involves diagnosis. “There’s a lot of overlap between diagnostic criteria, and what label you get kind of depends on where you go and who does the diagnosing a lot of times,” she says.
When Terry and her family moved to Southwest Indiana from Washington D.C. in 2002, she worked as a consultant for the Evansville-Vanderburgh School Corp. (EVSC). She evaluated preschool children for Attention Deficit
Hyperactivity Disorder, learning disabilities and other impairments.
“There are a lot of kids misdiagnosed with communication disorders,” she says. “There are a lot of kids misdiagnosed as being mentally handicapped that are not mentally handicapped.”
According to special education data from the Indiana Department of Education, on Dec. 1, 2008:
* 7.6 percent of children in the EVSC received special education services under a primary diagnosis of Communication Handicapped. The state average is 4.6 percent.
* 1.8 percent of EVSC students received services under the Mildly Mentally Handicapped category. The state average is 1.4 percent.
* 0.5 percent of EVSC students were diagnosed autistic. The state average is 1.0 percent.
Marcella Terry left the Cady Institute in May 2009 and now struggles to help her clients since only a handful of licensed practitioners will work with her. The Defeat Autism Now! Web site lists only five Indiana health care providers on its Clinician Registry. All but Cady are in Indianapolis.
“I’m dependent on trying to find somebody who will work with me,” she says. “And it is very, very difficult.” So frustrating that, sometimes, she vows to quit. “I want to hibernate, I want to paint, and I want to write,” she says. “I don’t want to do this anymore.”
But her resolve, so far, has always faded.
“I get an e-mail or a phone call from somebody who says, ‘I can’t believe how well my child is doing. Thank you, so much,'” she says, her voice breaking. “Then I go, ‘Okay. This is what I’m supposed to be doing.'”
Editor’s note: This story is the third in a series on autism and the Southwest Indiana environment.