Please tell a little about yourself and your role with autism in Venezuela.

Lilia Negrón, Psychiatrist. Founder of the Venezuelan Society for Autistic Children in 1979, and pioneer in the field of Autism in the country. Saw first case in 1975 and have been involved since then. The “Bernard Rimland” Center for Autism Spectrum Disorders has more than 3400 history cases in its files and also have seen patients from Colombia, Chile, Argentina, Perú, Ecuador, Puerto Rico, and even patients from the US and Canada. I am Defeat Autism Now practitioner. I sought the different programs that were started for autism treatment in Venezuela, for instance, the TEACCH program from the University of North Carolina at Chapel Hill, under the guidance of Dr. Eric Schopler; and always had the solidarian support of Dr. Bernard Rimland, since the beginning of our endeavors as an autism society. I have attended many conferences in the US like the ASA conferences (previously NSAC), the Defeat Autism Now Conferences, and Autism Recovery Network, and Feingold Association. I am Member of LINCA, México; former vice-president and currently consultant for the Latin American Federation of Autism (FELAC). Have also attended the APNA (Association of Parents of Autistic Children) from Spain, and have been speaker for several conferences for the LINCA league of Mexico at several Latin American countries like Perú, Ecuador, Puerto Rico, Guatemala, and Mexico). This year I will be speaking at the Dominican Republic and Argentina.

What is the prevalence of autism in Venezuela (if known)?

We do not know for sure because we do not have national statistics. Several organizations have attempted to do this census, but so far we have no results.

Within the Venezuelan culture, how aware are people of autism? How accepting are they of autism?

First, like in the 70’s and 80’s it was unknown. But through improvements in mass communications, we have been able to spread the information in many ways, and most recently through the Internet. People DO know what autism is or have at least heard about it. Acceptance is better now, but it was not so in the beginnings of our center.

What are the largest struggles for people with autism in Venezuela? Is there a story you know personally that demonstrates this struggle?

It is a very complex problem for almost all the parents who come to our center. Treatment can be very expensive due to the many tests involved, the supplements, schooling and care. Most people try their best to accomplish treatment but we have a very difficult socio-economic situation in our country at the moment. I know of a child whose parents suffer a great deal because their older son, got really bad despite of all our efforts to improve his health, he does not respond as we wish he would. He has to be secluded to a space in his house, does not want clothes and eats walls and other things around him. I wish we had the resources to have him hospitalized to perform the necessary tests and provide a better treatment. Normal people do suffer when they get sick in this country, but it is even worst for people with this problem.

What have been some of the greatest successes in Venezuela with autism?

The challenge of presenting new approaches have always been a problem in our country. We have succeeded when we have seen children get better with the treatments we indicate. Also having been able to stand up after 30 years despite of all the difficulties that we have faced, and still face today for lack of funds and professional assistance in the area of fundraising.
We have succeeded in having groups of parents and professionals in other cities of the country, follow our lead and started parents associations that also have great stories to tell. We have a story of 30 years of hard work. This month we are celebrating this special occasion (on March 28) with a special but very humble event where many of our founders will come to share with us.
We are still fighting though to stay alive..

Is there anything else about autism and Venezuela you would like to share?

We are living very difficult times in Venezuela right now, and autism is not among the priorities of our government.. Although there are many new different associations not related to us that are working for the benefit of the autistic population, most of their efforts go for education and not to medical treatments. The focus in funding is for the creation of special schools for autistic children, BUT our main interest is in mainstreaming and not segregation of children. We want children to integrate with others at regular schools, and we have many who have achieved this goal. We continue to strive for it, but without resources we do not know how long we can stand.

In order to get resources we have introduced a project for what we consider to be our ideal center. We are waiting for the approval by the Ministry of Science and Technology, but we have not received an answer as yet.

If you wish you can see the project in our web page www.sovenia.net on the left of the site under “Se ha introducido proyecto ante la ONCTI”.

Thanks for your attention and we are happy to answer whatever you need to know about us. We certainly need help in the area of technology (systems, computers, filing, digitalization of history cases (to reduce file storage space), therapists, psychologists, doctors, lab funding for low income families, etc).

Sincerely yours

Dr. Lilia Negrón, MD
Psychiatrist
President of SOVENIA
Director of Center of Diagnosis and Treatment for Autism “Bernard Rimland”