Recently I had the visit of my good friend Lina Becerra who came as a doctoral fellow to do work in my laboratory. Lina is a professor at Javeriana University and a doctoral student within the Department of Neurosciences at Valle University. During recent years Lina’s efforts have focused on publicizing the need for more research and treatment for individuals with autism spectrum disorders (ASD) in her country of Colombia. Not surprisingly, she is a founding member of Fundacion Autismo Colombia and an active participant in that organization (see http://autismocolombia.com/nosotros.html ). The purpose of the organization is to help autistic individuals and their family members regardless of their financial and/or social status.
During her visit to my laboratory Lina expressed some reservations regarding government efforts to provide health coverage legislation for autism. Members of the board in-charge of drafting the legislation are biased in favor of applied behavioral analysis. They do not seem to acknowledge the clinical heterogeneity of the condition and the need for individualized treatment. During the last few months Lina has been meeting with a host of individuals to increase the breath of the legislative effort in order to include varied perspectives from other health care providers, e.g., speech therapists, occupational therapists, audiologists, sensory integration specialists, nutritionists. The fear is that even with funding the new law will not cover the individualized needs of many patients. According to Lina the government wants to introduce care from the perspective that the child is misbehaving and needs behavioral intervention.
La Fundacion Autismo Colombia believes in individualized treatment. Children admitted to the Foundation are thoroughly evaluated by a multidisciplinary team. Therapy is equally decided as a team effort. ABA is never the first step taken; rather, the child is prompted to establish, on his/her own, an emotional bond with a therapist. Parent participation is necessary and they are included in the planning stages (determining which therapy to apply) and in the implementation of the same. One problem with this approach is that having no predetermined steps or protocols, evidence based outcomes and published articles are difficult to encounter in order to sustain its validity.
La Fundacion Colombia has as a main initiative the education, not only of parents but also of teachers, relatives, and anybody interested. They are now fundraising to acquire a building where all of these professionals can come together. Although still in the planning stages, it appears that a sensory integration gym will be a centerpiece of their establishment. Besides education, the Foundation is linked to the Javeraiana University in order to perform research. One of the basic propositions of their research endeavors is collecting basic epidemiological information. It seems that very simple things, like the prevalence rate of autism in that country, are not known and established government registers provide little useful information.
Lina likes what she sees as the future of autism in Colombia. She believes in meeting challenges head-on. She likes the fact that members of the Fundacion Autismo Colombia have their work cut out for them rather than not having anything to do.