Autistic Children Helped Through the Power of Touch
by Penny Cholmondeley
Five-year-old Bella Stagliano is as curious and full of life as any child her age. As a little girl diagnosed with an Autism Spectrum Disorder however, she is already facing numerous physical and emotional challenges certain to confront her throughout her lifetime. And she is not alone.
The statistics are staggering: According to the Autism Society of America, autism is the fastest-growing development disability in the country, affecting as many as 1.5 million Americans. The society predicts the annual cost of autism will increase to $200-400 billion by 2013.
While there is no consensus on what causes autism and which treatments offer the most potential for reversing the diagnosis, medical professionals do agree that early intervention and treatment is an important tool in improving quality of life for autistic children. Common treatments include educational and behavior training, as well as physical, occupational, speech and language therapies. Targeted pharmaceutical interventions are also used to address specific symptoms.
Two bodywork techniques—massage therapy and craniosacral therapy—are gaining attention and, while different in philosophy and techniques, proponents of each suggest benefits and the potential for growth.
Today little Bella engages in a school-based treatment program that combines speech, occupational and physical therapy, and applied behavioral analysis therapy. Her mother, Kim Stagliano, also chose to pursue craniosacral therapy as Bella’s primary treatment. Kim claims she has witnessed significant improvements not just in Bella, but also in her two other daughters, who are also autistic and have received craniosacral therapy at different stages as an adjunct treatment.
Kim’s proof that the craniosacral therapy is working is in the improved functioning, happiness and contentment of her children, and she attributes much of Bella’s progress to craniosacral therapy. “The results have primarily been a combination of emotional changes. As an autistic child, Bella has great difficulty with transitions, with newness, and with schedules being changed,” she says. The craniosacral therapy helps to ratchet down her anxiety tremendously, and helps with her new surroundings.
The Upledger Institute, founded in 1985 by osteopathic physician John Upledger, describes its brand of craniosacral therapy, CranioSacral Therapy, as a “gentle, hands-on method of evaluating and enhancing the functioning” of the craniosacral system—the physical environment in which the brain and spinal cord develop and function. The institute offers a CranioSacral Therapy certification program. Roy Desjarlais, vice president of clinical service at The Upledger Institute, posits that CranioSacral Therapy has tremendous benefits for children like Bella.
“The best approaches I’ve seen working with kids with autism in [CranioSacral Therapy] is where the therapist considers the entire family,” he says, “because a special-needs child is not the only beneficiary of the work. If you work on that child it can change dynamics in the family too.”
According to Desjarlais, the goal of a CranioSacral Therapist is to release recorded trauma in the body that accumulates over time, and ultimately causes compensatory mechanisms.
“We tune in to the body and how it specifically is holding restrictions and compensations, and use the craniosacral rhythm … in evaluation aspects to pinpoint where the causes are coming from,” Desjarlais says.
This is done through gentle and indirect techniques on the bones of the cranium and sacrum, he added. In craniosacral therapy, pressure is light, gentle and noninvasive.
“At a sensory level, it allows us to get deeper with less pressure,” explains Desjarlais. “Ultimately, what we are working to do is to access the central nervous system in its environment—the membrane system involved with the brain and spinal cord—and help facilitate release there so that ultimately the central nervous system can function more efficiently, more balanced more relaxed.”
CranioSacral Therapy can reduce some self-stimulatory and repetitive behaviors, says Desjarlais, as well as verbal communication and vocalization. Relaxation and increased connection with the present are other purported benefits.
A compassionate approach
Working with an autistic client requires a compassionate approach. Therapists need patience and neutrality to develop connections with autistic children.
“The challenge really is to be with that particular child, to be able to be and blend with them in a way that they will let you in, and hold them in a way that they’ll trust and feel the calming effects,” Desjarlais says.
Coursework offered by The Upledger Institute addresses how therapists can incorporate CranioSacral Therapy into their practice. There are also clinical application classes where smaller groups are offered a chance to work with clients while supervised. Desjarlais reports an increased interest in their training, particularly by massage therapists.
Michael Allen, M.D., a board certified pediatrician and a board-certified holistic physician in Sacramento, California, straddles the border between parent and physician in his thoughts on craniosacral therapy. He became acquainted with craniosacral therapy after the birth of his son Kieran in 1996. Diagnosed with cerebral palsy, Keiran suffered from severe seizures and global developmental delay.
“He was completely miserable,” recalls Allen, who turned first to traditional treatments for his son. “We saw every specialist imaginable, including four neurologists, but nothing we tried had any benefit. After trying homeopathy and herbal medicine we decided to try craniosacral therapy.” Keiran passed away at the age of 7, but his short life inspired his father.
The backing of craniosacral therapy by physicians like Allen is helping to provide credibility to craniosacral therapy, which has come under fire from many physicians over lack of hard scientific evidence to support claims by craniosacral therapists.
Today, Allen defends craniosacral therapy against critics and believes that the medical community is beginning to move beyond the boundaries of traditional allopathic medicine to try to find other modalities that are safe and effective for their patients. Based on his personal experience and response from the hundreds of patients he has treated or referred, Allen firmly believes that craniosacral therapy does work.
“It is unfortunate that some researchers and M.D.s will only evaluate a treatment option if it has undergone a randomized double blind crossover study that shows statistical significance,” he says.” And although this is a good way to evaluate some things, like medications, it is harder to do this with [craniosacral therapy].”
Allen believes a means will exist someday to test complementary therapies, revealing their mechanisms of action, and proving their effectiveness. “Until then, we can listen to our patients, be compassionate, and offer a variety of modalities that are safe and effective to assist in their healing.”
Although a more traditional practice than craniosacral therapy, massage therapy remains underutilized for autistic children, although research indicates its benefits.
Tiffany Field, Ph.D., is the director of the Touch Research Institute, an institution dedicated to studying the effects of touch therapy, at The University of Miami. To date the institute has conducted two successful studies with autistic children using massage.
In the first study, therapists massaged children from a special school for autistic children and examined the effects on their classroom behavior. They found that the children exhibited more on-task behavior following the massage protocol.
A second study placed parents in the role of the massage therapist and explored whether massage affected sleep patterns. Results indicated that the children slept sooner and longer, and woke less frequently in the night.
Therapists looking to work with autistic children should appreciate the difference between social touch and therapeutic touch, explains Field, who says autistic children who may not like unpredictable social touch will welcome pressure in the form of a massage.
“They’ll overt their eyes, they’ll arch their backs if you try touching them socially, but if give back rubs with pressure, we’ve found they’ve really liked it,” she says.
Field encourages therapists to keep a library of research papers and studies that they can share with parents and caregivers to generate interest and awareness of a treatment that is not always on their radar.
Contrary to the approach taken in craniosacral therapy, the techniques endorsed by both Field and Michael Regina-Whiteley, who specializes in massage for special-needs clients, involve deep pressure.
“I usually start working on the head and neck area, and I use deep pressure techniques as opposed to light strokes,” Regina-Whiteley says. “Light strokes would tend to overstimulate the client.”
Despite significant differences in treatment philosophy, like Desjarlais both Field and Regina-Whiteley note that patience is important when working with autistic children and in assessing their progress.
Regina-Whiteley says he looks for a general calming process and uses a mood assessment chart where the care providers track the client’s behavior 24 hours prior to and 24 hours following the massage to see if there are any changes to behavior. Some changes, such as range of motion, are largely evaluated by the caregiver. This role is not downplayed by Regina-Whiteley. Most care providers can’t afford daily massage therapy, so it is helpful when practitioners can teach simple massage techniques to caregivers so that clients can continue to receive treatment.
Build a special-needs clientele
Field believes competition between physical, occupational, and massage therapists contributes at least in part to a low number of massage therapists working with special-needs children. Likewise, physical therapists typically have advanced degrees and are more often covered by insurance.
“I think it is going to be a gradual process, where as insurance coverage becomes available, more massage therapists will be working in settings with special needs kids,” she says.
Yet, for three decades Regina-Whiteley has assisted clients with developmental disorders, including autism.
Regina-Whiteley says it is critical that everyone involved in the child’s treatment program work toward the same goals, and that a massage therapist obtains a thorough medical history and written guardian approval before starting treatment.
“The therapist will be working with an interdisciplinary team—the team of professionals that put together the client treatment plan, so you are all on the same page,” he says.
Concerned about the gap in the field and a lack of awareness about the special-needs population, in Regina-Whiteley decided to create specialized curricula offered through massage schools, and available through his Healing HouseCalls training division.
Improve quality of life
Therapeutic massage for special-needs children is a niche market that has remained relatively unexplored and offers potential for massage therapists looking to expand their practices. And the rewards of working with a client who needs a massage, as opposed to simply wanting one, are almost impossible to measure.
“It’s mostly the satisfaction of improving the quality of the client’s life, and for the people that live with them—either in a group home or a private home setting—whether it’s reduced noise from the client or a better relaxation period for the client,” Regina-Whiteley says.
He strongly encourages therapists and students interested in learning about working with autistic children to contact the local education chair of their association chapter, and for students to approach their schools about training opportunities.
“Out of a class of 30 or 40, if four of five people start specializing in this population, the clients are better off,” says Regina-Whiteley. “That is the whole reason why I teach.”
The most important reasons for increased participation are children like Bella Stagliano. Access to more treatment options, trained professionals, documented research and a well-educated public may broaden her prospects and give her chance to be what every child should be: happy and healthy.
Penny Cholmondeley is a freelance writer in British Columbia, Canada.
For a list of resources to help you learn more about working with a special-needs clientele, visit www.massagemag.com and click on “Special-Needs Resources.”
What is Autism?
“Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities … autism is a spectrum disorder and it affects each individual differently and at varying degrees.”
—Autism Society of America, www.autism-society.org
Case Study: John
“John” is a 10-year-old boy who moved into a group home after living with his parents for a few years. He was diagnosed at birth with autism and cerebral palsy. His parents state that he has never allowed very much touch, including hugs from the them. He would only echo questions asked of him. Assisting him with bathing was especially difficult because he would not allow staff to wash his body or hair, and he refused to do a thorough job himself. This client wouldn’t even allow staff to pat his back in praise; he would push their hands away.
After consultation with John’s interdisciplinary team it was decided that the focus of treatment would be twofold, beginning with light touch to his back, hands and arms while talking with him constantly (since we wanted to deal with verbal skills at the same time), to assist him in getting through his level of tactile defensiveness and to relax.
Progress was slow at first, but with a combination of soothing music and progressively deeper massage, he be began to accept me touching his back for periods of up to one minute. Calming music of his choice was played during sessions, and aromatherapy (lavender oil diffused in the air and mixed with his lotion) was applied.
John slowly began to allow me to massage his back, hands and arms with lotion. Before his untimely death due to testicular cancer, he had accepted his twice-weekly sessions for an average of 42 min. 37 sec. Staff reported that John had allowed them to assist him with activities of daily living, had occasionally requested a brief hug from select staff, and had developed a more useful vocabulary.
People who have worked with children, especially special-needs children, know that keeping the child on task for that length of time is amazing in itself. Who knows how far John would have progressed.
—Source: Michael Regina-Whiteley and Healing HouseCalls