Desperate Parents of Children with Autism Seek Alternative Treatments
Autism, and more broadly speaking autism spectrum disorder, is associated with a varying degree of poor brain development in which the affected child has difficulty with verbal and nonverbal communication, social interaction, and repetitive behaviors. Parents of children with severe autism are painted a bleak picture for their child’s future. Meltdowns, compulsive behaviors, and a lack of empathy make forming relationships difficult if not impossible for these children. Desperate parents of children with autism are thus seeking alternative treatments and spending thousands of dollars on unproven procedures. “We’ve tried everything. We’ve gone to everyone,” says Ariane Zurcher, whose daughter Emma was diagnosed with autism.
When neurologists, speech therapists, nutritionists, and behavioral therapists could not help, Zurcher waited months for an appointment with a developmental pediatrician who charged $200 for each consultation and did not take insurance. Next were naturopaths, homeopaths, Qigong masters, and even a psychic in Europe. Emma was given vitamin supplements, hyperbaric oxygen therapy, chelation, and restricted diets. At some point, rational thinking faded in the allure of a cure. Nonetheless, these treatments did not even help their child, let alone cure her. Zurcher is not alone, and it is estimated that more than 85 percent of children with autism in the United States receive alternative therapies.
This is not surprising, since there are only a few evidence-based treatments for autism. Behavioral therapy is known to help, but does not help every child with autism. Speech and occupational therapy are other options. There are only two drugs that have FDA approval to treat children with autism for their irritability: aripiprazole and risperidone. Both are associated with side effects such as anxiety, fatigue, and weight gain.
The fringe therapies that parents are seeking do not come cheap. Hyperbaric oxygen therapy in a pressurized chamber with pure oxygen costs $10,000 (for 80 treatments) and carries the risk of seizures, sinus pain, and bruised eardrums. Thirty sessions of chelation therapy to remove heavy metals from the body cost about $4,000 and put the child at risk of heart failure. Every so-called “miracle” solution comes at a hefty price and has significant side effects.
There are two stem cell therapy trials underway in the United States that could benefit children with autism. Postmortem examinations on children with autism have shown that they have inflamed brain tissue. One animal model is studying the effect of stem cells in alleviating inflammation in tissues such as bowel, bone, and brain. At present, however, parents of children with autism who want to try stem cell therapy must fly overseas, as it is not yet approved in the U.S. Zurcher took Emma to Central America for stem cell treatments, but they did not help. Sarah Collins, on the other hand, flew to Panama City, Panama, so that both her boys with autism could receive stem cell treatments, and she is pleased with the results. She says her older son has recovered and her younger son has improved. She runs the Stem Cell Therapy for Autism group on Facebook to help other parents like her. Collins says clinical trials in the U.S. are not an option for many parents, because their child could end up in the control group that receives a placebo.
References:
- http://www.theatlantic.com/health/archive/2016/09/fringe-therapies-spectrum/501023/
- https://www.autismspeaks.org/what-autism
