Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by repetitive behaviour patterns and difficulty in social interaction. According to the World Health Organization (WHO), it is estimated that one in 88 children has signs of autism. In Brazil alone, there are two million people with the diagnosis.
For Keiny Goulart and her husband, Marlon, receiving their son’s diagnosis was not easy. After seeking professional help, Keiny decided to act. Together she and her husband created the Adventist Family Support Network for the Autistic Family (RAAFA). In an interview, Keiny tells how the project’s first steps and dreams for the future are going.
How did autism become part of your family’s reality?
My son, Derek, was diagnosed when he was two years old and it was not easy. I went through a very serious grieving process. At the time, I sought psychological help and, after being discharged, I started fighting for my son. Derek went through several types of therapy in the beginning. Each carrier on the autistic spectrum is unique in its own way. I realized that, because there was no cure for autism, nor a specific cause, my family and I needed a support network.
Where did the idea to create RAAFA come from?
At the time, a friend invited me to a meeting organized by an evangelical church in São Paulo for families of autistic people. The theme “A Biblical Look at Autism” caught my attention. At that time, I was awakened to the need to create a support network for Adventist families who deal with autism. It was then that my husband, Marlon, and I decided to create RAAFA.
When did you start RAAFA and how is it being received?
We started the project in February 2020 and officially launched it on April 2nd, on World Autism Awareness Day. One of RAAFA’s greatest missions is to love, support and welcome families with the exchange of experiences and with messages of hope about the return of Christ. We have received support from many people for this beginning, including Adventist Church leaders across South America. We have assisted over 500 people, including parents, family members and educators of those with autism.
How does the support network work in practice?
The goal of the network is to provide parents with a welcome and assistance in this journey with autism. We organize ourselves into a large group on WhatsApp, also in subgroups that cater to specific regions or realities. We started with just three of these subgroups and today we have 16. (See each one at the end of the interview). The groups have strict rules of coexistence so that the focus on reception and assistance is maintained. In addition to Brazil, other countries are joining the project, such as Canada, Chile and Bolivia.
What dreams do you still want to fulfil through RAAFA?
Our biggest dream, after the quarantine, is to hold face-to-face meetings with specialists in the regions across Brazil, Canada and Chile, led by moderators who are already creating a link through the network via WhatsApp. We also want to create training for educators and classroom assistants on how to act with these children. The same will be for Sabbath School teachers and leaders of the Adventurers and Pathfinders Club. Finally, we want to hold annual meetings with all participants in the network and professionals in the field for instructions, scientific information, new treatments and, of course, exchanging experiences between families. Soon, we will expand to all regions of Brazil and South America.
If you would like more information, you can meet the RAAFA group and subgroups on WhatsApp:
RAAFA – Keiny, Derek’s mother. Click here to participate.
RAAFA Canada – Ana Stina, Dudu’s mother. Click here to participate.
May 16, 2020Brazil, South American DivisionMauren Fernandes