Venezuelan Society for Autistic Children and Adults
Autism changed the entire course of my career in 1975 when I saw my first patient. From then on it has been a rocky road for me and the Venezuelan Society for Autistic Children and Adults (SOVENIA), the institution that I created along with the parents of my first patients.
In our country, autism is defined as an incurable syndrome and parents are only taught to resist and do the best they can. This is not our approach though. We think autism is a developmental disorder characterized by speech and communication difficulties and lack of social interaction. We believe autism is a symptom of a more complex illness that manifests itself in many aspects of the child’s health, causing him metabolic and immune problems, multiple allergies, and detoxification issues in children with a genetic predisposition. We believe that the environment is the trigger to all of these issues.
In our country, autism is not believed to be curable or even treatable. Common interventions include drugs, psychoeducational therapy, speech therapy, and special education classes if the child has some basic skills.
Image of Lilia Negron with colleagues at the Venezuelan Society for Autistic Children and Adults.I have set aside my main area of specialization in Psychiatry to work with these children. I am the pioneer in the field of autism in my country, Venezuela. I, along with my staff and institution, have had many problems with other professionals in the field who do not accept our biomedical approach.
The typical referral process begins with the first person to notice something is wrong. This is usually the parents. When they talk about what they see in their children to their pediatrician, he or she almost always does not see anything wrong. When they do, because it is too obvious, they then refer the child to a Pediatric Neurologist who recommends EEGs, other scans, and sometimes very sophisticated tests, resulting in parents spending way too much money from the very beginning without even starting a real treatment. Sometimes they just tell the parents to start their children on drugs like Ritalin, Strattera, and others of this kind. The numbers of doctors that are changing their views is increasing, but it is not ideal.
Due to our outreach work, news media coverage and websites established in other countries, the numbers of parents referred by their pediatricians to us or other institutions like ours has increased, and parents are not wasting too much time. The usual experience is that parents start seeing symptoms around 12 months, then start seeking help and finally see a doctor when the child is around 2 years of age. I would say that the average age to get a diagnosis here in Venezuela is between 3.5 and 4 years of age.
I really believe there is an autism epidemic.
The educational options available in Venezuela vary.
Governmental institutions started approximately 10 years ago, but are not widespread except for some centers that never started up as they should have. Those that are functioning still need a lot of people trained in the field (teachers, assistants, therapists, etc.). The government has special schools where they serve kids with different disorders like Down syndrome and autism, among the most distinguishable.
Most of the educational options are private and expensive. Parents have to work hard to get assistance, scholarships, aids, etc., to pay for these services in addition to biomedical treatment.
Here in Venezuela the most common education options are behavior modification therapy, TEACCH program (which we follow), Picture Exchange Communication System (PECS), and Applied Behavioral Analysis (ABA) or something similar to it, since some of the providers do not have licenses to use the name in Venezuela. There is also a law by the Ministry of Education that enforces mainstreaming when it is possible, but in reality, it is hard for parents when they say their child is on the autism spectrum or has Asperger Syndrome. However, parents have managed to keep their kids in regular schools despite all of the difficulties. Some of our high-functioning autistic and Asperger children have graduated from high school and college.
We collaborate with a pediatric gastroenterologist who provides care to all of the children with gastrointestinal issues and provides counseling with nutritional interventions. Our gastroenterologist is also conducting research in collaboration with researchers in the United States. We have mothers who have received training with the Gluten Free/Casein Free (GF/CF) Diet and other interventions, who regularly attend the Defeat Autism Now Conferences with me.
We provide assessment and re-evaluation services using the Psychoeducational Profile Revised (PEP-R) and other tests. We offer Auditory Integration Therapy with the Berard Method, and have a physician who specializes in Phoniatrics and ORL. Just recently, we began to refer children to other specialists for treatments involving hyperbaric chambers and stem cells, but are just beginning with these two and are still studying the possibilities.
The most serious problem in Venezuela involves adults with autism, who have not had the option of these new treatments and cannot find solutions to their needs as their parents age. There are mainly private institutions for adults where parents pay a high amount for facilities that are typically not very good, with the exception of one or two. Most of the time, parents live with their autistic adults, but those who are not treated are the real problem. They are like orphans, and we have many sad stories on this issue. We do have a few adults who come to our Respite Center on a daily basis to receive help and training in acquiring everyday life skills.
The communication alternatives that we use at our Center are the TEACCH cards. Others in Venezuela also use this program, and a few other centers are using PECs, but we do not have many specialists in these two areas.
There are very few doctors at our Center and our main focus is on the medical status and biomedical treatment of our patients. The educational part is taken care of by other centers.
Dra. Lilia Negron
Venezuelan Society for Autistic Children and Adults (SOVENIA)
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.