Life Stories: when autism knocks on your door

When I created the ‘Yellow Bird’ brand, I knew I wanted to create a writing brand with a social purpose. For me, words have a social mission, so it made perfect sense to combine my passion for writing with a cause close to my heart: autism.

This connection with autism began shortly after I finished university. I had a strong desire to work with social organisations in the so-called Social Economy (or Third Sector) and so I started sending hundreds of emails to all the IPSSs that existed in Portugal. Only two got back to me: one of them was the ABC Real Centre.

That’s how my interest in telling life stories began to emerge.

The ABCReal Centre is a leading organisation in Portugal that has brought with it a unique treatment method for autism in children and young people. I met its director, Dr Albertina Marçal, at a time when she had already brought this method directly from the United States to Portugal. I sat down with her in a school in Trafaria and she told me all about her life story and her personal mission: to bring the ABCReal centre to more and more parents and children who needed its support.

When I created the writing brand ‘Pássaro Amarelo’ at the end of 2023, I knew I wanted to associate it with this cause. I told Albertina Marçal about my idea and she decided to contact some people connected to the Centre who might be interested in seeing their story spread more widely on the channels used by Pássaro Amarelo.

That’s how I met Taciana, Dudu’s mum, who has a degree in law and international relations, is a lawyer and sits in the Chamber of Deputies of the Brazilian government.

I’ll start by telling you a little about his life story. A mum of four, Taciana was very willing to talk about her life story, which has since been shared in various media in Brazil.

On the phone, she told me that when she was pregnant with twins, one of the babies developed a chronic heart condition that beat very slowly. This baby, Eduardo, like his twin brother, was born prematurely. Eduardo had his heart enlarged after birth and almost joined the transplant queue. Her son’s chances of survival were only 3 per cent and Taciana therefore believes that there was a miracle through Our Lady of Aparecida.

The operation went well. Over time, Taciana realised that Eduardo didn’t develop normally like children his age: he was very agitated and wouldn’t look people in the eye. At the age of two, he began to show the first symptoms of autism. He started therapies but none worked: Dudu couldn’t play or speak. Everything changed when her son was 5 and she discovered ABA therapy. Eduardo was now showing signs of improvement.

Taciana was a pioneer in founding an organisation that selects and appoints qualified professionals to apply ABA therapy in Brazil, helping mothers with the difficult task of managing the lives of their children with autism. This is how ‘Selo ABA’ and the non-profit ‘Educatea’ institute were born, made up of professionals who are able to apply ABA therapy to children and young people, while at the same time defending inclusive education.

It’s important to talk about inclusive education when it comes to autism. Both Taciana and Albertina, in their conversations with me, drew attention to the lack of inclusivity that exists around this disorder: several cases are reported of autistic children being pushed aside by schools that claim to be inclusive. There is therefore a great concern on the part of these mothers to create a second home for their children, where they can feel welcome.

I had the feeling I could go on talking to Taciana for more than a week.

The challenges faced by parents who have children with autism are enormous: society’s lack of understanding and stigma don’t help to break down barriers that prevent the use of effective treatments to combat this disorder, the causes of which are still unknown. Even so, examples like Taciana’s, which help to build solutions to problems, are very valuable and bring hope to all those who have to deal with complex issues in their daily lives.

The Yellow Bird therefore joins this cause, Taciana’s story and that of so many other mums who want to tell, through words, what has been the greatest challenge of their lives: fighting autism with courage and bringing health and well-being to their children.

Maria Inês Rebelo – The Yellow Bird

17.08.2024