Whole-person care DOs combine range of approaches in battling autism Several OMM specialists and other DOs are earning recognition for helping children who suffer from autism. July 1, 2009Wednesday Carolyn Schierhorn Contact cschierhorn Facebook Twitter LinkedIn Email Topics autism A neurodevelopmental disorder of uncertain etiology, autism spans a spectrum of symptoms and magnitudes of severity. Characterized by impaired communication and social skills, self-stimulating behavior, sensory integration problems, rigid routines and other maladaptive traits, the disorder confounds, frustrates and often devastates the escalating number of families who confront it. Today, autism afflicts one in 150 children in the United States, according to the federal Centers for Disease Control and Prevention. In 1980, physicians diagnosed only one in 10,000 children with autism. While some autism experts attribute part of this surge to a broadening of the diagnosis and greater public awareness of the disorder, most concur that the incidence of autism has increased dramatically. Children with autism range from those who cannot communicate at all and have severe cognitive impairment to those with Asperger syndrome, who typically are intelligent and verbally communicative but don’t make appropriate eye contact, lack the ability to interpret social cues, and fixate on circumscribed areas of interest. Theories abound regarding the underlying causes and triggers of autism, and there is no definitive cure. But healthcare professionals tend to agree that autistic children require intense early intervention to at least partially surmount their developmental challenges. “Because the prognosis is better the earlier autism is diagnosed, pediatricians and family physicians need to be knowledgeable about the early signs of autism,” says Stanley E. Grogg, DO, a former president of the American College of Osteopathic Pediatricians (ACOP). Almost always emerging in a child’s first three years of life, autism cannot be diagnosed reliably before age 18 months and frequently isn’t diagnosed until two or three years later. To help primary care physicians detect early indications of autism, the American Academy of Pediatrics (AAP) provides guidelines on the developmental surveillance and screening of infants and toddlers at well-child visits. If a child exhibits signs of developmental difficulties by 16 months of age, the AAP recommends that parents be asked to complete the Modified Checklist for Autism in Toddlers (known as M-CHAT). This screening tool addresses such milestones as taking interest in other children, pointing to indicate interest in an object or activity, imitating others and responding to one’s name when called. “Children with autism need compassion, understanding and a medical home,” emphasizes Dr. Grogg, the interim dean of the Oklahoma State University College of Osteopathic Medicine (OSU-COM) in Tulsa and the interim president of OSU’s Center for Health Sciences. Because autism requires a team approach to treatment, Dr. Grogg urges osteopathic pediatricians and family physicians to seize the lead and coordinate care with the many healthcare and other professionals who can help these children, such as speech therapists, occupational therapists, behavioral therapists, physical therapists and school-based psychologists and social workers. He warns that because families often are desperate for answers and help, they may be vulnerable to harmful misconceptions about autism. Primary care physicians need to dispel the persistent notion that the disorder is caused by vaccines, stresses Dr. Grogg, who is the AOA’s liaison to the CDC’s Advisory Committee on Immunization Practices. He notes that an oft-cited study published in the February 1998 issue of The Lancet, which reported a causal relationship between autism and the measles, mumps and rubella vaccine, was subsequently discredited for using falsified data. Other scientific studies have not shown a link between vaccines and autism, he says. “All of the evidence has indicated that vaccines are not connected to autism,” agrees Robert L. Hendren IV, DO, who served as the executive director of the MIND Institute at the University of California, Davis, for eight years before joining the University of California, San Francisco (UCSF), on July 1. “It is far more dangerous for children not to be vaccinated.” But some osteopathic physicians argue that the research findings on autism and vaccines have been contradictory, that more research needs to be done, and that the large epidemiological studies often cited by vaccination proponents say nothing about individual risk. “Autism is a multifactorial disorder,” Dr. Grogg notes. “Some people seem to be genetically predisposed to develop the disorder in the presence of certain environmental conditions. But research is still inconclusive about what causes autism.” “We believe that autism results from a gene-environmental interaction,” says Dr. Hendren, speaking on behalf of himself and basic scientists, geneticists, pediatric neurologists, psychologists and other clinicians at the MIND Institute who have studied autism. “Children who develop autism may have a compromised immune system at a particular time when an environmental stressor intrudes.” The MIND Institute is beginning to conduct what is believed to be the largest and most comprehensive assessment of children with autism to date. The Autism Phenome Project, which will study 1,800 young children, aims to distinguish among the recognized phenotypes of autism and link these subgroups to distinct patterns of behavior and biological changes. A multidisciplinary team of more than 50 researchers will conduct the multisite longitudinal study, which has been in the design phase for two years. Autism researchers hope that more information on the multiple variations of autism will lead to better understanding of what causes autism, earlier detection of the disorder, more effective individualized interventions and, ultimately, a cure and preventive measures. “As an osteopathic physician, I appreciate the mind-body relationship, the importance of treating the whole person and the need to help the body heal itself,” says Dr. Hendren, the vice chairman of the UCSF School of Medicine’s Department of Psychiatry, noting that DOs generally are more willing than MDs to explore alternative treatments. When he was its executive director, MIND conducted pilot studies on autism treatments that are not considered to be part of mainstream medicine, such as vitamin B-12 injections and the removal of casein and gluten from the diet. Some children with autism did benefit from these treatments, particularly the B-12 injections, Dr. Hendren says. One goal of the Autism Phenome Project is to identify and explain these and other subgroups. Meanwhile, 1.5 million Americans and their families are struggling with the disorder, according to MIND, an acronym for Medical Investigation of Neurodevelopmental Disorders. Some osteopathic physicians insist they already know enough about autism’s underlying causes and environmental triggers to make a significant difference in autistic patients’ lives. Indeed, a number of specialists in osteopathic manipulative medicine and DOs who integrate complementary and alternative medicine into their practices have earned widespread recognition for helping autistic children. Many DOs combine osteopathic manipulative treatment, especially cranial techniques, with other interventions. Identifying causes, triggers “Mainstream medicine offers few, if any, solutions for autistic children and their families,” contends pediatrician Shawn K. Centers, DO, the clinical director of the Osteopathic Center for Children & Families, founded by Viola M. Frymann, DO, in San Diego. The Osteopathic Center has treated more than 2,000 children with an autism diagnosis during the past 10 years and receives referrals from across the country, says Dr. Centers, a fellow of the ACOP. Dr. Centers insists that while autism may have a genetic component, only environmental factors could account for the explosion in cases. He believes that birth trauma, diet, electromagnetic field exposure from cell phones and wireless transmissions, and xenobiotics—substances foreign to the human body that are increasingly prevalent in the environment—are significant cofactors in the development of autism. “Research has shown that autistic children are 12 times more likely to have suffered birth trauma or complications than their nonautistic siblings,” says Dr. Centers. He notes that while musculoskeletal problems from vaginal birth trauma are usually more obvious to the eye, delivery by cesarean section can also cause structural problems in newborns because a C-section delivery doesn’t allow a newborn’s cranium to go through the natural molding process of compression and expansion that occurs during vaginal delivery. Thus, when taking patient histories, Dr. Centers always asks detailed questions about birth trauma, not just to the head but also to extremities, and finds out whether a child was delivered by C-section. “In addition to taking detailed osteopathic histories, it is extremely important to conduct thorough physical and osteopathic structural examinations,” he says. Dr. Centers points out that children with autism exhibit a myriad of gastrointestinal symptoms, such as chronic diarrhea, constipation, abdominal pain and malabsorptions syndromes. He notes that research by Karl Reichelt, MD, PhD, an internationally known pediatric gastroenterologist from Norway, suggests that many children with autism cannot significantly break down large dietary proteins, such as casein, a protein in cow’s milk, and gluten, a protein primarily found in wheat. “When these incompletely digested proteins, called peptides, enter the bloodstream, they can cause abnormal opiate receptor stimulation and increases in the level of the brain chemical serotonin,” Dr. Centers says. “An estimated 60% to 90% of autistic children have markedly high levels of serotonin in their bodies. “These high serotonin levels may lead to sensitivities to touch, loud noises, the tags on clothing, and so forth, and eventually cause a child to enter an extremely self-focused autistic state.” “We find that in 80% of children with autism who have elevated dietary peptide levels, behavior symptoms, language and other cognitive functions improve after gluten and casein are removed from the diet,” Dr. Centers maintains. He asserts that some cases of autism are made worse by environmental toxins, including polychlorinated biphenyls, or PCBs; heavy metals such as arsenic, mercury and aluminum; and sodium lauryl sulfate, an ingredient found in shampoo, toothpaste, soap and bubble bath products. While he doesn’t claim that vaccines cause autism, he points out that mercury and aluminum are known neurological toxins that are present in many vaccines. Dr. Centers believes vaccines could be involved in some autism cases, such as children with autism symptoms who suffer from underlying mitochondrial disease. However, he contends that “blaming autism on the vaccines is the easy way out and does not necessarily correlate with the current available data related to autism.” “Autism is a much more complicated disorder than simply a reaction to vaccines,” he says. Dr. Centers notes that concerns about thimerosal, a mercury-containing vaccine preservative, led Gov Arnold Swarzenegger to sign California’s Mercury-Free Act of 2004, which took effect on July 1, 2006. This act prohibits physicians from administering mercury-containing vaccines to children younger than 3 years old, as well as to pregnant women. For most vaccines, the law defines mercury-free as having not more than 0.5 microgram of mercury per 0.5 milliliter of vaccine dose. The California limit for influenza vaccines, however, is twice as high—1 microgram of mercury per 0.5 milliliter. “It’s nearly impossible to make flu vaccines without mercury,” Dr. Centers says. However, despite the removal of mercury from most childhood vaccines, California’s autism rate has not declined and Dr. Centers has not seen a reduction in autism cases in his practice. Nationally, the autism rate also has not decreased, despite the large-scale removal of thimerosal. By 2004, with the exception of influenza vaccines, most vaccines administered routinely to children younger than 6 in the United States were already free of all but trace amounts of thimerosal, according to the US Food and Drug Administration. In 1999, while insisting that then-current levels of thimerosal in vaccines were safe, the FDA and the CDC jointly asked pharmaceutical companies to remove thimerosal from vaccines as quickly as possible, with the AAP issuing a similar request. The phase-out of thimerosal took place over the next five years. “There was no recall of previously manufactured vaccines containing thimerosal,” points out Sherri Tenpenny, DO, a vocal opponent of vaccination who practices OMM in Cleveland. She maintains that children continued to be vaccinated with the old vaccine formulations for years after the federal government urged thimerosal’s removal. Convinced that superbugs and genetically modified foods are more likely triggers of autism than vaccines, E. Carlisle Holland, DO, believes autism is a genetically influenced autoimmune disorder that is aggravated by environmental factors. “Caused by a combination of immune stressors, autism is a cascade of compounding effects,” emphasizes Dr. Holland, who practices OMM in Sebastopol, Calif. In his 30 years of practice, Dr. Holland has seen a high incidence of autistic children who have close biological relatives with autoimmune disorders, such as Hashimoto disease, lupus erythematosus, fibromyalgia and chronic fatigue and immune dysfunction syndrome (known as CFIDS). He believes that physicians need to look at the health of a patient’s family members to gain a deeper understanding of each patient with autism. Associated with most cases of autism, gastrointestinal infection is both a cause and effect of the disorder’s symptoms, according to Dr. Holland, who notes that restoring the appropriate balance of flora in the bowel can help many autistic patients. For patients with autism symptoms, he orders quantitative stool analyses that show the extent to which various intestinal microflora are present in the bowel instead of typical stool cultures that indicate only whether certain pathogens are present. He may also run tests for food allergies and the presence of heavy metals. Depending on the laboratory findings, he prescribes antimicrobial medications and recommends probiotics and other dietary interventions. “If children come to me with a diagnosis of autism, I have to look for a causative link,” says Cheryl A. Leuthaeuser, DO, who practices family medicine, OMM and integrative medicine in Richfield, Ohio. “My job is to be a good detective.” She conducts lengthy patient histories on the children with autism she sees and, when indicated, orders lab work to determine whether the patients have endocrine disorders, food allergies, GI problems, and nutritional, particularly vitamin B-12, deficiencies. “Some autistic children who are given B-12 injections begin speaking for the first time in two to four weeks,” Dr. Leuthaeuser maintains. Dr. Leuthaeuser, who says she has treated more than 1,000 patients for autism, notes that many children with autism have concomitant diagnoses, such as hypotonia and pes planus. She takes these other conditions into account when deciding on treatment protocols. Similarly, for each patient labeled autistic whom she sees, Mary Ann Block, DO, of Hurst, Texas, searches for underlying causes of that individual’s symptoms before beginning treatment. She orders a variety of laboratory tests, including tests for food and inhalant allergies, blood glucose level, thyroid function, liver and kidney function, complete blood count, and, if chronic diarrhea is present, celiac disease. A comprehensive digestive stool analysis, casein-gluten peptide test, blood mineral test, white blood cell nutritional function test and viral panel are among the other laboratory evaluations Dr. Block may recommend. “Many children with autism symptoms have food allergies, nutritional deficiencies and digestive problems,” points out Dr. Block, the founder and medical director of the Block Center, which treats patients for developmental and behavioral disorders, such as attention-deficit/hyperactivity disorder and autism, without medications. To emphasize that autism results from organic disease, Dr. Block uses the term autism encephalosis, which she coined, in her practice instead of autism. She takes particular issue with the classification of autism as a psychiatric disorder. The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition—Text Revision classifies autistic disorder under “pervasive developmental disorders.” The diagnostic criteria include qualitative impairment in social interaction, such as a lack of spontaneous seeking to share enjoyment and interests with others; qualitative impairments in communication, such as stereotyped and repetitive use of language; and restricted and stereotyped patterns of behavior and activities, such as persistent preoccupation with parts of objects. “Because autism is considered a psychiatric disorder, it is defined by observed symptoms,” Dr. Block points out. “As a result, autism is a subjective disorder, as is the case with all psychiatric disorders.” In 1943, Austrian-born child and adolescent psychiatrist Leo Kanner, MD, was the first to identify autism as a psychiatric disorder, which he attributed to a lack of parental warmth. In the 1950s and 1960s, widely published child psychologist Bruno Bettleheim, PhD, popularized the so-called “refrigerator mother” theory of autism. In 1964, Bernard Rimland, PhD, a psychologist with an autistic son who later founded the Autism Research Institute in San Diego, dismissed the “refrigerator mother” theory in his book Infantile Autism: The Syndrome and Its Implications for the Neural Theory of Behavior. Although the theory that cold parenting causes autism has long been discredited, the effects of labeling autism as a psychiatric disorder persist to this day, Dr. Block maintains. “When the symptoms were determined to be a psychiatric problem, they were not evaluated further to find an underlying biological reason for them,” she observes. For decades, virtually no information was known about the causes of autism symptoms and parents were often told, “There is nothing that can be done,” Dr. Block notes. “But in recent years, because of the efforts of parents and concerned physicians, many underlying causes have been found,” Dr. Block insists. “Many children who were once labeled autistic no longer manifest the same symptoms and are leading normal successful lives.” Addressing structural problems Structural problems can contribute significantly to autism symptoms, according to Eric J. Dolgin, DO, the president emeritus of The Cranial Academy who practices OMM in Santa Monica, Calif. He performs cranial OMT on patients with autism who have structural aberrations in their cranial and spinal regions. “Often we find problems with the inherent motion of the brain and spinal cord in children with autism. We call this an ignition problem,” notes Dr. Dolgin, who treated his first autistic patient in 1983 and today treats numerous patients with autism, many of whom travel with their families from Nevada and Arizona, as well as other parts of California, to see him. One of Dr. Dolgin’s patients, a boy adopted as a toddler from Russia, was featured in the 2007 HBO documentary Autism: The Musical. The son of autism advocate and professional acting coach Elaine Hall, Neal Katz has severe autism, but Dr. Dolgin says that he has been able to alleviate some of the boy’s most troubling symptoms with cranial OMT. “When he first came to see me 10 years ago, Neal had been having nightmares and seizures and would often bang his head against the wall,” Dr. Dolgin recounts. “In examining him, I found that he had a great deal of compression from the frontal area to the base of the cranium, which prevented his brain from functioning.” Dr. Dolgin notes that he initially treated Neal once a week over a period of eight weeks. “In two weeks, his seizures and head banging stopped. After six weeks of treatment, he had much better concentration and social interaction and less repetitive behavior,” Dr. Dolgin remembers. Dr. Dolgin continues to treat Neal, who is now in his mid-teens, four to five times per year. “He still has severe autism, but he is so much more communicative,” Dr. Dolgin notes. “Although he can’t vocalize many words—he grunts—he can communicate by very well by typing on a computer keyboard or a speech synthesizer. “There is a great deal of poetry in Neal as evidenced by the words he communicates with.” “Most nonverbal autistic patients have cranial compression,” agrees Dr. Leuthaeuser. “Releasing that can cause a big improvement in eye contact,” she notes. Margaret A. Sorrell, DO, who practices OMM in Freeland, Wash, addressed “osteopathic structural considerations” in an article titled “Autistic Spectrum Disorder,” published in the March 2008 issue of the American Academy of Osteopathy’s publication The AAO Journal. In this article, she cited longitudinal research conducted by Lawrence Lavine, DO, MPH, of Tacoma, Wash., between 1995 and 1999. In the sample of 25 children with autism examined and treated by Dr. Lavine, 22 exhibited cranial compression, restriction in the left middle cranial fossa, or both, Dr. Sorrell reported. “Palpable restrictions were evident in the left frontal temporal sphenoidal articulation regions extending to the spheno-squamous pivot area and left zygoma,” Dr. Sorrell wrote. “For the three children who did not show this pattern, one exhibited a cranial torsion, and the other two had lateral strains with significant plagiocephaly. In all 25 children, bilateral condlar compression was noted and sacral motion was restricted.” Dr. Lavine treated all 25 children with OMT, and they all received at least one other intervention, such as developmental therapy and dietary modifications. During a 1999 Internet conference known as “Autism ’99,” Dr. Lavine reported that 15 of the children were initiating social contact, communicating in sentences of at least four words, and engaging in spontaneous imaginative play. Titled “Effect of Osteopathic Medical Management on Neurological Development in Children,” an article by Dr. Fymann and others published in the June 1992 issue of JAOA—The Journal of the American Osteopathic Association indicated that OMT can help improve developmental scores in both learning disabled and neurotypical children. While acknowledging the “anecdotal reports” that cranial OMT helps patients with autism, Dr. Hendren would like to see more scientific research evaluating cranial OMT as a treatment for patients with autism. The MIND Institute considered setting up a double-blind clinical trial to examine the effects of cranial techniques on patients with autism but did not proceed with the study because of the ethical considerations, risks and costs involved in using sham treatments. In addition to cranial OMT, DOs have used other OMT techniques to alleviate autism symptoms. For example, Dr. Centers uses the Fulford percussion technique to reach deep tissue and fascia. “Many children with autism respond to vibration,” he says. “It’s a way to introduce touch to children who typically don’t like to be touched.” Dr. Leuthaeuser performs diaphragm release and other techniques that improve the lymphatic system. “Diaphragm release is helpful for the many kids with autism who have diarrhea, constipation and abdominal bloating,” she points out. Building rapport Because many children with autism have an aversion to touch, a number of DOs will wait until the second or third visit before introducing OMT. “The hardest issue in healing children with autism is engaging them and getting them to lie down,” Dr. Leuthaeuser says. “Many times I’ll use the first and second visit just to get acquainted with a patient. I’ll touch the patient but not use OMT.” Dr. Leuthaeuser notes that sometimes during the initial visits, she’ll sit facing the children and place their feet in her lap. If the children have pes planus, she’ll evaluate their arches and knees using gentle touch. “It can be a significant challenge to get children with autism to lie on the table,” agrees Dr. Centers. “Light restraint in some children is necessary.” He uses assistants and volunteers at times to gently hold the children so he can perform OMT. Dr. Centers sometimes has his patients with autism sit on a zero-balance chair rather than lie on an examination table. “A lot of autistic children have been traumatized from various procedures,” he notes. “I want to make them as comfortable as possible.” “When treating these kids, it’s important to be friendly,” Dr. Dolgin adds. To soothe and bond with his patients with autism, he will often sing to them or have a classical music station or CD of children’s songs playing in the background. DOs who treat children with autism should also be aware of the stress autism causes on family life, Dr. Centers notes. “Autism affects every aspect of a family and all members of a family,” he says. “It affects family economics, a family’s ability to go on vacation, and how other children in the family will be treated.” It has been estimated that as many as 80% of parents with autistic children end up getting divorced. Dr. Centers suggests that osteopathic physicians become knowledgeable about community resources so they can refer parents to family counselors and therapists familiar with autism’s impact, support groups for families dealing with autism, and respite services for such families. Holistic approach “Autism is a complex disorder and needs to be addressed in a complete, holistic and caring way,” Dr. Center emphasizes. In addition to performing OMT and recommending a casein- and gluten-free diet and other nutritional interventions, Dr. Centers sometimes suggests that patients with autism undergo Tomatis Method auditory therapy, which desensitizes them to noise and improves listening skills and voice control. He also may refer autistic patients to developmental optometrists, who can fit children who don’t make eye contact with special glasses that force them to focus on what is in front of them. Dr. Hendren adds that many children with autism benefit from applied behavioral analysis (known as ABA)—a training system that uses repetition and reinforcement to build desired skills and behavioral traits. As a psychiatrist, Dr. Hendren has prescribed medication to alleviate some symptoms of autism. Risperidone is the only medication that the FDA has approved to treat autistic children who have uncontrollable irritability or are violent toward themselves and others. “This medication doesn’t cure autism by any means, and it can have serious side effects,” Dr. Hendren says. “It can cause significant weight gain and sometimes increases blood glucose and lipid levels.” Some children are at risk of developing type 2 diabetes mellitus on risperidone, he warns. Requiring a combination of approaches, battling autism is very expensive and treatments are often not covered by health insurance plans or Medicaid. A number of DOs who have made names for themselves in treating patients with autism using OMM and complementary medicine do not accept insurance because of reimbursement difficulties. To give children from lower- and middle-income families access to care for autism, Dr. Dolgin founded the Kids’ Brain Trust, a nonprofit clinic in Santa Monica. Scheduled to open by the end of this year, the pilot clinic will provide one year of free treatment, including OMT and dietary interventions, for 2- to 6-year-old children who have mild to moderate autism. (See the box on this page.) “One of our goals is to get children with autism mainstreamed in the public schools,” Dr. Dolgin notes. “These children often are segregated in self-contained special-needs classrooms. “As a profession, we can do so much to help those who are diagnosed with autism.” Previous articleFrom war-torn past, ’09 grad begins her new future Next articleMedicare: Communication or confusion?
Carolyn Schierhorns article about different DOs approaches to autism was very informative and while I was interested in the different approaches taken by various specialists it was the inset about vaccines that really caught my eye. As a scientist and physician I believe that a discourse between opposing views is healthy, however a journal such as the DO needs to be very careful about differentiating a doctor’s statement encapsulating evidence based results, such as those mentioned by Dr. Grogg and the anecdotal experience of individual physicians. In the area of vaccines especially, such individual non-researched opinions can cause significant problems for parents unsure about how to vaccinate their children. The insert is full of statements that should have been examined further or better explained. For example Dr. Leuthauser advised caution in vaccinating healthy young children. Why? What publication does she quote as evidence for doing so? What paper recommends testing titers before regular immunizations in a healthy child? Dr Blood thinks children receive to many vaccines. Please name the evidence based study that supports that line of thought. In both of these instances there are none. At least they still give immunizations. Dr Tenpenny gives none and her only reason for not doing so is a conspiracy theory! Are we as a profession really in agreement that “rarely fatal” is a standard of care? Is “rarely fatal” a reason to let a child suffer? How about “high morbity”? Does that count? It should also be noted that epidemiological studies can indirectly prove causation if the number of causative factors is very low like in the case of the MMR vaccine, one. As far as individual risk is concerned, of course it can’t be given. Risk can only be assessed if cause is known . I can only beg the DO’s editors to take a serious look at what they publish. If they do not understand the differences in study terms or in evidence versus anecdotal information then they need to have an advisory board to help them. This kind of reporting is not only dangerous to families but frankly embarrassing to our profession as well. George Anadiotis D.O. Jul. 20, 2010, at 4:18 pm Reply
Dr. Robert L Hendren and his views on autism are referenced in the above article. He is an outstanding researcher and a wonderful person. He has done some important research recently in showing efficacy of methyl-B12 shots in autism via a double blinded trial. I have posted a transcript of an interview with him where we discussed the trial here: http://autismrc.com/ Apr. 4, 2016, at 2:00 pm Reply