Henrique de Melo Parise

Born in March 14th 1998 in Lisbon, firstborn of Hamilton and Magda, he was a calm, smiley baby, with a regular development, except for some peculiarities that, as any father and mother, were never understood as more than “child cuties”.

From an early age he revealed, however, an extraordinary intelligence. He loved puzzles and enjoyed books. He had a very special connection with his Aunt Silvia (his Tata, as he called her) and with his grandmother Ana. He hated feeling the lawn or the beach sand in his hands, but he loved water, to swim or just splash.

He spent his first few years at home at the care of his parents and his nanny Sandra, who took care of him like a son. Every morning he would take milk in his parents’ bed while closely watching the episodes of Heidi and Marco, a routine he loved. At the age of three, he started going to day care and he cried on his first day… when his mother came to pick him up!

It was from that moment on that he started developing his language. Henrique was a late-talker, but when he started, he did it with a grammatical and verbal construction higher than expected for his age. In his 4th year at school, the teacher confessed us that when addressing the theme of constellations and planets Henrique asked some questions that made her have to look up the answer in books and on the Internet. When the polemic about Pluto being or not being a planet hatched, it left Henrique really worried and confused. After all, he knew by heart the planets, and this new approach wouldn’t fit his astrological chart.

It was during a weekend spent with his grandmother that a friend of hers, who was a special needs teacher, delicately commented that Henrique seemed different, too serious for his young age, and suggested that he should be seen by Professor Lobo Antunes at Cadin in Cascais, by the end of 2009. The diagnose was immediate: Henrique has a disorder of the autism spectre, known as Asperger’s Syndrome.

Henrique and his way of being, began making sense to his closer relatives. His extraordinary intelligence, the hard time giving hugs or demonstrating outspoken affection, his liking for repetition of tasks or routines, the way he elaborated a subject he was interested in, his love for the piano, which he started learning from a young age because of his grandmother, his “lack of propensity” for activities such as football.

Kids with Asperger’s are “normal” kids, they do not have the typical symptoms of autism, their incapability focuses on the social relations. An “Aspie”, as they are known, do not learn by repetition, words are taken literately and irony and sarcasm are not understood at all. Feelings and emotions are not learnt and therefore are not “felt” – or they are in a different way. An “Aspie” is direct and honest, they don’t have the needed social tactic, a behaviour that may shock people that are not familiar with this condition, and be misinterpreted as rudeness.

Henrique’s diagnosis is finished in 2010, the year he moves to Bern, Switzerland, with his family. In this new city and new school, he gets the support from the state, who always provided appropriate pedagogical support. He enrolled the Conservatory of Bern, where he loved learning how to play new compositions for piano. His grandparents offer him a piano, the house is filled with music when he practises daily. Life takes its course…

Making friends wasn’t easy, it was never easy for Henrique, who was a lonely person, socially very lonely. He demonstrated a more special bond only with his brother, with his parents’ emotional communication was not as intense. Parents learnt to respect his space, his way of being, learning everyday how to communicate, providing him the routines that calmed him, sustaining his daily life in the way that better fitted his way of being.

Henrique preferred the company of adults, he enjoyed conversations with his uncles or friends of his parents who lived in the same building and where frequent visitors and his family support. He sought shelter in his piano and informatics, ultimately chosen as his confident.

After finishing 9th year, he went to high school where it was impossible for him to adapt, and from where he asked to leave after a desperate episode where he tried for the first time lo leave us. It was a friend that reached his mother by text message and informed her of Henrique’s goodbye; it was his father that found him still in time, picked him up and brought him back home. Henrique was only16 at the time… The shock, the anguish during these hours… Henrique does not want to talk about it; he asks to leave high school, he keeps getting pedagogical support, starts attending a support group, refusing psychological support, and requests that what he tried to do remains confidential. His wish was respected.

In that same year, family moves for a different town, a more quiet place, in Murten (Freiburg). Henrique attends Austismuslink, in Bern, in search for a professional vocation, which it finds in informatics. He applies for a job in several companies, in order to follow the professional course of learning, but in all of them is refused. Although they recognise him an extraordinary intellectual capacity, Henrique is different… Some even said they were sorry, but wouldn’t know how to deal with that difference, and because of that they refuse to accept him, once they’re not familiar with the “disease”… Frustration is huge, at least for the parents, once Henrique don’t manifests himself, it is not possible for him to express what the refusals make him feel…

Ended his time in Austismuslink, he passes a “motivation semester” in Freiburg, where he keeps attending languages and mathematics classes, and at the same time he gets “coached” about how to create a CV and to apply to work offers. He is also encouraged to try new professional approaches, due to the fact that informatics has more candidates than the vacancies available for students. Somewhat against the school board recommendation (after all, there were 200 candidates for 25 vacancies), but with full support of IVBern and of the assistant that follows him, as well as full commitment from his parents, Henrique applies for a four years informatics course in Bern. And with great success, once he receives a letter inviting him to be one of the new students. Against all expectations, except for the certainty of his parents in his capacities, Henrique begins his new life of student in Bern, and life itself gets back in its “normal” course again.

During the one and a half year he attends the new school, the only particularity keeps being the absence of social relationships, unusual for a teenager. No going to the movies, music shows, bars; there was never a no sleeping night waiting for him to arrive from an all night long party. A “goody-two-shoes” boy, with routines, always available to help everybody no matter what. All you had to do was asking. He was a blood donor, he helped and contributed to several associations. He was a volunteer firefighter and subscriber of the local newspaper (which was for free, but he considered it was only fair to pay for it, so he decided to subscribe it only to help).

Asperger’s Syndrome has some particularities that made all of Henrique’s family to learn again how to relate with him, in order to adapt to the way Henrique lived the world around him. Personal communication was tough, and almost pulled out via questions that had to be raised in several different ways in order to get an answer. Henrique always “ran away” from answering questions about any personal issue, or that would involve the feelings that he could not understand, and he didn’t learn like the others. To be nice, understand emotions, was almost impossible, and tying to be like the others, when in fact he was different from them, was painful.

Henrique had a social deficit. And that took him to a depression that he managed to keep away from those that surrounded him. The frustration of not being able to “reach” him, to build up a “bridge” with Henrique, is something impossible to describe. The feeling of powerlessness was enormous. Henrique was different and could not adapt to a life in society, along with all that loved him.

Henrique was special. And that is what he wants everybody to know, that is what he asked us – that we help to spread the word and raise awareness in the society that special persons exist, and that everybody should be accepted as they are.

In Memories

On these occasions we it is customary to praise the deceased. I know the words, but I am not sure I can bring them into a speech.

About Henrique, 19 years old, I may tell you how he was a good student, half way towards finishing his degree on computing, how he was intelligent – he got one of 25 vacancies amongst more than 200 candidates –  how punctual and rigorous, how he studied and played piano at the Bern Conservatory, that he was a blood donor, and a firemen. But all these are brief references of a good prince, a citizen who took his time to take care of others, one that did not give any trouble, and had no enemies. This is not a sentimental perspective from his grandparents but a common view from everyone who dealt with him, as clearly mentioned by the director of the school where we was enrolled and by the commander of the local fire station. In short, as his grandmother used to say, Henrique was a sweet boy.

This is one side of the coin. There is the other side too.

Henrique had a mild form of Asperger syndrome, with some chance that this would evolve. In general terms, his adaptation to Swiss society was a difficult one. In personal terms, apart from the difficulty with playing ball sports, we can only mention the extreme difficulty in finding an internship, for more than one year, in view of his Aspergers. Despite his direct entry into the Polytechnic and everything seemingly going well for him, these situations may have contributed to a slow but persistent depression, which he always hide.

Henrique was very reserved, mainly about some feelings that he didn’t understand because he couldn’t feel them. That acute sense of being different from the others was extremely painful for him. His attentive grandmother, with whom he had a unique relationship, advised him quite often not to form literal conclusions from other people’s behavior or papers. I also used to remind him that every person has to live with the other’s ironies, with his own gods and demons and he was no exception.

The distance and the deliberate concealment of his depression hindered us and his doctor (whom he visited regularly), but also his parents and teachers from suspecting that something was not well with his soul. The illusion that all is well when we meet normal social behavior and intelligence is an error that may prevent us from offering  other appropriate treatments and care. And this is the warning I want to leave here to those families with similar situations.

In this context, it is easier to understand his farewell words on that fateful night:

.  A statement: I love you all.

– A request: That society should acknowledge that different people should be treated normally.

– A dramatic citation that, due to the syndrome, he interpreted literally, peculiarly and with rigidity, and which therefore had fatal consequences:“Man is the only animal for whom his own existence is a problem which he has to solve and from which he cannot escape.” (Erich Fromm)

Dr. Ribeiro Nunes