Wading Through the Minefield of Autism Treatments
autism presents a challenge first and foremost to the child's family
Posted Jan 24, 2010
A child diagnosed with autism presents a challenge first and foremost to the child's family but also to their physician, teachers, and many others. Once a diagnosis is made the family must decide what they will do for their child and they may be, at least initially, guided by their pediatricians' advice. The well-read physician may be aware of the scientific evidence pointing to genetics and early, perhaps prenatal, environmental influences that culminate in the abnormal brain development that seems to occur in children with autism but what about treatment? Because autism is a developmental disability and not a "distinct disease entity" (Lancaster, 2005), it may be apparent that educational and clinical strategies will be necessary to address the child's skill deficits and behavioral excesses (e.g., self-injury, stereotypic behavior; my next post will discuss problem behavior as communication). Perhaps the physician has read the Surgeon General's report (USDHHS, 1999) stating that autism can be treated through the application of behavior analysis. They may have even encountered some published research on early intensive behavioral intervention such as the meta-analysis by Eldevik and colleagues (2009; Journal of Clinical Child & Adolescent Psychology). However, many pediatricians and others are not aware of this information or have been led to believe that there are many effective treatments for autism.
There is a myriad of unfounded therapies for autism, most of which have, at best personal testimonials as the only evidence that there are benefits from these therapies. One of my favorite testimonials comes from a discussion hippotherapy (horse riding):
"Personally, I have found in treating children with hippotherapy who have a diagnosis of autism that not only language is improved but gross motor, fine motor, motor planning skills and long term and short term memory, as well as eye contact, interaction with their environment and ability to transition activities as well as carry over into many other educational and social goals." (Hyperion Farm, Inc., retrieved 2/05)
Horse riding is fun, good exercise, a way to meet people with similar interests and socialize but to claim that horse riding is going to treat autism is exceptionally misleading. One of the reasons I start with this example is that there is clearly no harm in riding horses and as long as the money spent on such an activity is not taking away from the resources for providing educational and clinical services. Taking up a hobby like this may produce an indirect benefit and increase the opportunities for socialization and practicing skills learned in other settings; however, the testimonial offers an extraordinary claim. Such extraordinary claims are not uncommon but extraordinary evidence is necessary to back up such remarks.
Professional testimonials of a treatment's effectiveness, in the absence of controlled demonstrations of the outcome of therapy, should be considered as unreliable at least partly due to the financial benefit of providing service. Testimonials by a child's caregivers must also be questioned as a valid source of information because of the predisposition of people to rate any treatment as effective no matter the effects it produces. Understandably, such beliefs are significantly influenced by the caregiver's desire for an improvement in the child's condition. Many therapies are very costly and also influence a caregiver's opinion towards a belief in its benefit. Testimonials can also be influenced by actual gains a child is making. In these cases a misattribution of the source of the improvement may occur. For example, a child may be making steady progress through clinical and educational services they are receiving but the family attributes these gains as being due to secretin injections or chelation because they have paid several thousand dollars for these treatments. Though secretin is no longer the flavor of the day (though I'm aware of a number of parents who have recently tried this treatment), chelation is very much in vogue.
Chelation is thought by many to treat autism through mercury detoxification and is a controversial therapy suggested as a useful intervention for many conditions. Chelation as a treatment for autism stems from the discredited notion that autism is caused by mercury in vaccines. One form of chelation therapy involves injecting an amino acid, EDTA, into the body. EDTA then binds with heavy metals, like mercury, and allows the body to excrete them. However, chelation is only effective for true heavy metal poisoning and there are some questions as to whether this therapy should be reserved for only the most severe cases of such poisoning. Many have suggested that chelation is effective in treating arteriosclerosis but the American Heart Association states that there is no empirical evidence supporting this treatment. They also list several deleterious side effects possible with chelation including kidney failure, convulsions, shock, and heart and breathing difficulties. Several persons have also died while undergoing chelation for arteriosclerosis and a child with autism died during this therapy in Pittsburgh, PA in 2005.
A story was recently published in the Chicago Tribune documenting a new form of chelation therapy (http://www.chicagotribune.com/health/chi-autism-chemicaljan17,0,3036818,...). The story was written by Tribune reporter, Trine Tsouderos. She writes "(a)n industrial chemical developed to help separate heavy metals from polluted soil and mining drainage is being sold as a dietary supplement by a luminary in the world of alternative autism treatments." The article is an excellent piece detailing the development and marketing of this unfounded therapy. It also includes a staggering testimonial of a mother of three children with autism. One of them never received vaccines but the mother is still providing her with this supplement and feels it is producing a positive effect. It is not clear whether there is any reason to suspect that this intervention would work and plenty of evidence to suggest there is the potential for harm to be caused to the children treated with it.
It is a good idea for all parents and any person responsible for procuring funding for autism services to require solid, objective evidence before selecting an intervention of any kind. As to the criteria for evaluating clinical and educational services for individuals diagnosed with autism, knowledge of the scientific evidence for behavioral intervention is one step. Another critical step is to evaluate the specific service provider to ensure that the services they provide match up with the service shown to produce improvement. One excellent resource on the this topic is Dawson and Osterling's (1997) chapter evaluating the common elements of effective intervention services for children with autism. Neither author is a behavior analyst, although Dr. Dawson has been involved in research evaluating early intensive behavioral intervention. They state that every program offering clinical and educational service should be expected to have:
1. A curriculum that addresses social, verbal, and other key deficit areas
2. Highly structured teaching that is generalized to the natural environment
3. Predictable routines
4. A functional approach to treating problem behavior
5. Preparation of the child for transitioning to public school services
6. Familial involvement in providing intervention
Dawson, G., & Osterling, J. (1997). Early intervention in autism. Guralnick MJ (ed). The
Effectiveness of Early Intervention. Baltimore, MD: Paul H. Brookes Publishing Co,
Eldevik, S., Hastings, R.P., Hughes, J. C., Jahr, E., Eikeseth, S. & Cross, S. (2009). Meta-
analysis of early intensive behavioral intervention for children with autism, Journal of
Clinical Child & Adolescent Psychology, 38, 439-450.
Hyperion Farm, Inc. (retrieved 2/7/2005). Hippotherapy FAQs - Hyperion Farm, Inc.: Question
#5 (on the use of hippotherapy for improving communication in children with autism).
Lancaster, B.M. (2005). Assessment and treatment of autism. Indian Journal of Pediatrics [cited
2005 Feb 2]; 72, 45-52. http://www.ijppediatricsindia.org/.
United States Department of Health and Human Services. (1999). Mental Health: A report of the
Surgeon General. Rockville, MD: U.S. Department of Health and Human Services,
Substance Abuse and Mental Health Services Administration, Center for Mental Health
Services, National Institute of Health, National Institute of Mental Health.