Nicol with her son Johann Sebastian
Nicol with her son Johann Sebastian / JOSÉ RAMÓN LADRA

"We all have a talent; it just has to be discovered"

  • Nicol didn't know what was wrong with her baby. The diagnoses ranged from hydrocephalus to a cerebral cyst. It took 13 years to find out that he had Asperger's

"I wouldn't hold out much hope. Just give him love." That was what Nicol was told just a few months after giving birth to her son Johann Sebastian, whom she named after the famous composer, almost as a premonition.

However this woman, who was born in Italy and lived in Venezuela until a little under two years ago, disregarded that advice and drove huge distances to take Johann to every specialist she thought might be able to help him overcome the endless problems with which he came into the world after an eight month pregnancy. Possible hydrocephalus, spasticity, tonic asymmetry, motor retardation, a cerebral cyst with the risk of growing and becoming malignant...

"At first I only paid attention to the physical and motor problems because they were the most evident and most urgent, so it wasn't until later that we saw some signs of autism, especially the selective mutism. He would only speak to people when he wanted to, and he would only communicate by singing. We encouraged that because we thought it would be good for him," explains Nicol, who continued to consult specialists because she was convinced that Johann was showing signs of improvement.

At the age of 11, he was diagnosed with slight autism and a year or two later it was confirmed that he had Asperger's. "That gave me a certain tranquility, but no more than that. In Venezuela there are no special schools, the teachers don't really understand the disorder and nobody could help us in that aspect. Life there is complicated even for people without any disabilities or disorders, so for those who do the situation is infinitely worse.

"For example, for people with Asperger's it is very important to follow their normal routines, but how can you do that in a place where at any moment you might have to get off a bus because somebody's about to rob you? How do you explain that they have to stop reading because there is a power cut and you don't know when there might be light again?" she asks.

However, Nicol's academic training (she teaches physical education to children with special needs) and her positive attitude meant that she kept looking for the best way for Johann to overcome his social and affective problems. She channelled all her efforts into the talent that her little boy had shown for music, specifically opera singing.

A couple of years ago, when he was 19, Nicol was told that Johann could have a very exciting future in music, but it would mean leaving Venezuela. So, the family packed their bags and moved to Ocaña (Toledo) from where this tenor in the making travels to Madrid to attend classes at the Escuela Superior de Canto, as well as to his performances with the JORCAM (Community of Madrid Youth Choir) and rehearsals with the choir for other people with Asperger's, whom he helps as a volunteer.

"Paradoxically, Johann adapted to a new life in Spain faster than we did. We are delighted and very grateful for the welcome we have received here," says Nicol, who also helps in group sessions for parents from the Asperger's Association of Madrid.

On 18 February, International Asperger's Day, that association and others will attempt to give visibility to a disorder about which there is a great lack of understanding. In many cases, it looks as if there is nothing wrong with the person. In less severe cases, they can just seem unusual, rude or a bit manic, but Asperger's always causes suffering and it can be a real handicap.

"We need to get used to growing up in an environment marked by diversity and coexistence, rather than just tolerance. There is room for everyone in this world and fortunately there are tools to make it possible," says Nicol.

Johann has been closely following our conversation, taking notes, clarifying and expanding on it when he thought it necessary.

"I don't want to seem egocentric, but I am living proof that everyone has a talent, but it has to be discovered and empowered. You can progress a great deal if you work at it. Before, I used to be cold and antisocial. I didn't like anyone to touch me. I found it hard at school because of the other pupils and even some of the teachers, but thanks to music, my mother, my brother, my mother's partner, who I think of as a father, and the teachers I have had recently, I started to improve my social skills and make friends. Now I know how to hug someone, I'm independent and I know what it is to fall in love. It's not easy, but nothing is in life and there are definitely people in far worse situations than mine," says Johann, giving us a fierce hug to say goodbye.

He starts to walk away and then comes back to remind us that we have promised to mention his girlfriend Ana.

She also has Asperger's and would have liked to have taken part in the interview, but she was unable to do so because she was sitting exams at university.