Wherever I have lived in the world, I have always talked about autism, and about Tomas. One, because it is true our son Tomas is autistic, and two, to get beyond the fear. You have to show to people that it is okay. It is a bit scary—a diagnosis like that—but there is nothing to be scared of.
Tomas was born in 1997. We had always thought there was something unusual and slightly different about our son. He was delayed in speech, which is where we thought there might be something going on. We spoke two languages—Portuguese (my wife is Portuguese) and English. And, he did not speak very much till he was about three. [We] saw a speech therapist, who said, ‘switch to one language, so that he [speaks] quickly’. Then we moved to Brussels. To be honest, he was okay in school before that, but the European school he went to said, ‘We can’t educate him’. This was the first time we had the school saying this. He was seven. Then he was diagnosed [with autism] in February 2005. It does not come as a bolt from the blue. Nevertheless, it is quite a shock when it happens. The next thing I thought was, he is no different from [how] he was the day before; it is not like he has a disease. It is just that that is the way his brain is wired. It is a diagnosis, but it is not a change in him at all.
First, you have to make peace with the diagnosis and the nature of your child yourself. I think I did [struggle] with [that]. You have expectations about what your child is going to do. I played a huge amount of sports. I thought my son is bound to want to play sports. But [he did] not. But that has got nothing to do with autism, that is just how life is. It may just apply in a slightly more acute way to being a parent of a kid on the autistic spectrum. You have to do a hard thing, which is, mourn the future, and say, well, this is not going to be how you might have imagined it to be. But you have to get over yourself a bit on that.
The second thing you have to do is to lose any sense of shame. Shame is a corrosive and powerful social emotion. But you do it. You have to reach acceptance in yourself because everyone has to accept their children. Then you have to not project anything other than confidence and pride and love in your child to the rest of the world. The rest of the world very often is uncomfortable with differences. Human beings, as animals, are wired to be cautious about differences.
Then you have to be realistic. You do not want to put your autistic child in particular situations that are going to be very stressful for them.
Tomas is now 25. He has finished university. He is very creative. He writes. He is sometimes given scripts to read to comment on by production house(s).
I found that the good teachers were very confident with Tomas, and they just looked at him like they are looking at all the other pupils, in terms of just being an individual.
It is very hard to draw the line between what is autism and what is Tomas. It is who he is. That makes it quite hard to diagnose. There is no blood test, and there is no antibiotic you take to kind of remove it. So I like Tomas and that includes some bits that people would think of as autistic.
I think the labels help from the point of view of dealing with a school. But they can also be limiting. Look at some of the outstanding paralympic athletes, for example. I was ambassador in Brazil when they had the Rio Paralympics. You might think, ‘Oh, that’s a person with no legs.’ That is kind of true, but he is also an amazing athlete.
I remember we got very good, practical advice from Tony Atwood, who is quite an expert in this area. Somebody was talking about handwriting. My son’s handwriting was terrible. [He said] ‘why bother, just type!’
You have to push them in some areas, and understand the things that will give them pleasure. And, find things that you are going to enjoy together, maybe the things you never imagined. I do not think I had ever expected to spend time in the world of Warhammer. But I did with Tomas, I just enjoy it very much.
Tomas was not bullied very often, partly because he is big and partly because he just does not respond. But I think at one of his schools in Brazil, a kid was trying to bully him. If I remember rightly, that kid sort of taunted him, in the way that teenage boys do, about being gay. And our son said, “Well, I wouldn’t mind if I was. In any case, why are you so homophobic?” I think he was lucky in that he is very confident. Tomas is very ‘unbullyable’. He was born confident.
On the whole, people are actually very accepting. They adapt pretty quickly. Our son is very sensitive to and aware of people who respond to him in a warm and open way. Occasionally, people do not. But you have to carry on and have a good life. But in the end, he has to deal with it more than anyone else.
I think it is attributed to Gandhi, I don’t know whether it is correct or not—we think the enemy is hate; the enemy is not hate, it is fear. Fear and shame are very corrosive. Tomas’s life is just life, like everyone else’s. You have to get rid of social shame. That is just nonsense. [There are] people [who] want to make you feel ashamed. But that is just silly. You just have to ignore that. You have to understand what are the things that are going to work for your child. And, ask yourself ultimately—is my child happy?
—As told to Mandira Nayar