Maria Isabel Bayonas Ibarra: Autism Efforts at the International Level

Occasionally I will write about people that have made a difference in the world of autism. My first attempt at writing a biographical sketch exalting someone’s lifetime achievements dealt with the great patient advocate Bernard Rimland (https://corticalchauvinism.wordpress.com/2013/02/21/bernard-rimland/). Today I write about another luminary, a gracious lady that has been the moving force for autism at the international level. Her name is Maria Isabel Bayonas, founding member and perennial president of the Asociacion de Padres de Personas con Autismo (APNA) in Spain.

Maria Isabel has never been a conventional person. By profession she was a “rejoneadora”, that is, a female bullfighter who impales the broad backside of bulls with special lancets called “banderillas”. There have been less than a dozen women rejoneadoras in Spain’s history. Her chosen profession divulges a particular character trait, Maria Isabel has never been a quitter. The fact that she has also been able to orchestrate a mayor movement internationally attests to both her organizational skills and how well-liked and respected she is in different countries around the world. I think that what has attracted so many people to her work is that she is a plain spoken person whose point of view always reflects her experiences as a loving mother. You can watch some of her TV interviews at http://infoinclusion.blogspot.com/2010/11/personas-antes-que-autistas-maria.html

When her young son David was born, Maria Isabel knew that there was something wrong. Young David avoided being touched and spent long stretches of time looking at a blank ceiling. Diagnosis had to wait until he was 9 years old when David was partaking in worrisome self-injurious behaviors. One of the pioneers of Spanish neuropsychiatry, Dr. Angel Diez Cuervo, examined David and made a diagnosis of hyperkinesis and autism. Specialized treatment was recommended but, back then, little resources were available in Spain or anywhere around the world. Given the circumstances, Maria Isabel along with 7 other families, decided to establish the first parent support group (APNA) for autism in Spain. The organization convened in Maria Isabel’s apartment in Madrid and remained there for the first three years of its existence. According to what I have read, this may be the third oldest, continuously running autism organization in the world.

The vision of Maria Isabel is that autistic individuals are people first and her labor is to make them happy. She has been an ardent advocate for their rights to receive proper education, health care, and life skills training.In pursuing what was best for her son, Maria Isabel had to face single handedly the arbitrariness of a fascist regime under the dictatorship of Franco. Also, very much like Bernard Rimland in the United States, her work had to overcome the ignorance and misconception of people and the medical profession who were accepting of the psychoanalytical precepts espoused by Bruno Bettelheim. Indeed, at one point Maria Isabel was told that David was fine but that she was the one who was crazy!

An interesting story by Adam Feinstein in his book “A History of Autism” makes reference to the general ignorance regarding autism by the community in general. In an early magazine profile of Maria Isabel her photograph appears alongside a row of cars. It seems that for the editor of the magazine the word “autism” conjured the image of cars or “autos”!

During the last decade Maria Isabel has been a mayor force within the political arena not only promoting change but asking politicians to fulfill their promises (she has often said that politicians suffer from Alzheimer’s and they need being reminded of their promises).

Under the guiding hand of Maria Isabel, APNA has played a mayor role in promoting research and drawing public attention to autism. She has organized several international congresses and has promoted similar movements throughout Hispanic countries and Europe. In 1978, Maria Isabel helped establish the first International Autism Symposium in Madrid with more than 1,800 delegates in attendance. Two of the main speakers were Bernard Rimland and Ivar Lovaas. Maria Isabel has also been a founding member of both the Latin American Federation of Autism (FELAC) as well as the World Autism Organization (1998). The latter had its first congress in 2002 in Australia, in South Africa in 2006, and in Monterrey, Mexico in 2010. The next World Congress on Autism will be in Kuwait in 2014.

At present David, who served as the inspiration to establish APNA, works in a newspaper stand close by to Maria Isabel’s apartment. He is well known and liked by all of the customers. David has memorized all of their likes (what they usually buy) and even their birthdays. He attends all of the congresses with her mother and enjoys having his photograph taken with other participants. He knows he is special, not for his autism, but for the love of his family.

David

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