Maria Dubis: We’re here to talk about your book, The A Word, which is very noteworthy. Who is the book dedicated for? For parents, or perhaps for specialists, so that they can see the parents’ perspective on autism?
Nikodem Sadłowski: My book is for everyone, because I wrote it first and foremost as a parent, a father. I’m also a preschool and early primary school guidance counsellor – which is an unusual post for a man in Poland. I wrote this book to vent all the emotions that accompanied all of this. I didn’t plan to write the book. It wasn’t like I sat down and said, ‘Right! I’m going to write a book’. I started blogging in English (I run two blogs, one in Polish and one in English), and started venting my emotions there, as is I was filling up a hard drive, to get rid of them as part of self-therapy. One day, I showed my wife a piece I wrote, and she said that I should publish it. And the book is meant for everyone. Recently, a father e-mailed me, saying that he thinks that my book should be given to people in birthing schools, because the life of a parent has frequent surprises in store for you. That’s not to say that you should be afraid of your child having autism or being sick. Rather, it’s about making the readers realise that many children are born who have to go through different things, like sickness or disability. I think that readers of my book will know, more or less, what they might have to go through.
Do you feel like an educator?
Not an educator, no, but rather a person who fights for autism awareness. I’d like people to know more about autism, but I’m not on any specific mission as such. I just want all of us to know more, because this is a difficult subject, and statistics show that the number of children born with ASD is growing.
It’s a very personal book. Writing it must have cost you a lot…
As I said, it was a form of self-therapy. I was able to handle matters better this way. I could call myself a type of an emotional exhibitionist: I don’t have a problem with it, I can talk about emotions with anybody. The book is very personal and very emotional for me. Even when I look through it now, I don’t like reading it. I wrote my book and put it away. It cost me a lot.
You say in your book that your son, Maks, was a mystery to you. Does the mystery unravel to you with time?
Yes, it does. Maks is now 7. With him, I feel like a detective. I look for nuances, I look at him, I investigate his behaviour – but I do this on the healthy level of a parent. He’s a mystery to me, but first and foremost, he’s the best inspiration possible. Whenever I’m having a bad day or something goes wrong in my life, I tell myself that my son goes to school every day and works on his behaviour, and so what kind of a father would I be if I gave up someday? He inspires me every day. I think about him as my superhero. That’s why there’s a superhero on the cover of my book.
You’re a married couple with two kids. Apart from Maks, you also have Livia, who’s a healthy girl. But how do your children function with each other? Have you observed them learning anything from each other?
Livia isn’t healthy, because autism isn’t a sickness. But I know what you mean, it’s easier to say. We’re raising two different kids, and we approach it like this: when Maks misbehaves as a seven-year-old, then he’s a misbehaving seven-year-old, not autistic. And when he shows autistic behaviour, then we look at him a bit differently. And Livia is a 5-year-old, full of life and joy. We try to raise our two kids differently. It’s not like we devote more time to Maks, because everyone has their own needs that need to be met. As parents, we try to be fully aware, and we hope that we’re quite good at it.
A fragment of your book tells about a painful moment when your guidance counsellor told you that there could be something wrong with your child, that he could have autism. What advice would you give to parents who are taking the first steps on this road? Where should they go to? Whom should they ask? How should they ask?
It’s very difficult, because each of us is a different human being. Each of us may react differently. There are parents who do not accept such feedback at all for many years. Then there are parents who fall into depression, which makes this a very delicate subject. I, however, think that if someone notices that there’s something wrong with your child, it’s worth seeing a specialist. We were told initially that boys develop more slowly, and that Maks still has time to develop. This confused us a bit, because in hindsight, I can see that the symptoms were noticeable earlier. But this was our first child, and I didn’t know much about being a father. I didn’t know how a child should develop. I only had the necessary experience with Livia, after I graduated from the university. I’d say you should look for specialists and foundations that deal with diagnosis and support, because having support right from the start is the most important thing.
In the UK, we focus on helping children through an individual approach – we don’t use the word ‘therapy’ at all in the UK.
We have an individual plan for each child in the school and we try to carry it out. We adjust the therapy to the child, not the other way around. In the UK, there’s what’s called a child-centred approach, meaning the child is of central importance, unlike in Poland. I know that in Poland, they use method such as the Krakow method or behaviourism, but I’m up-to-date, because I’ve lived abroad for 12 years.
You used to be a support worker. What did that entail?
I now work in Edinburgh in a special needs school as an assistant teacher. The school admits children from the end of the spectrum, meaning children with severe disorders, as well as aggression and auto aggression. It’s not an easy job. Every day, we meet children who hurt themselves and so on. So it’s really sad sometimes, because their autism is very deep. Many of the children have delayed development. For instance, I work with a class of 10-year-olds, some of whom have the mental development of 18-month-old babies. At the same time, I love this job, and it gives me a lot of satisfaction, because I know that people don’t much talk about the children from the end of the spectrum. You hear about Asperger’s and children who are highly talented. Over here, we have children whose live really isn’t shaping up to well, every day being terrifying and sad. I’d like to bring at least some sunshine to their lives, and that’s one of the reasons I love my job so much. My book brings up a very important issue, namely, that fathers tend to leave their families if they have children with autism.
As far as I know, it’s not just about autism, but disability as well, with 80% of fathers leaving their families. I don’t know what it’s all about. Maybe it’s due to the lack of awareness that you can still live your life to the fullest, that you can pull through and that disability doesn’t mean the end of the world. It’s very problematic for me as well, because I don’t understand fathers who leave. It’s very sad. I think that if we brought up such subjects throughout the course of education, for instance in secondary school, social awareness would improve. We’re often afraid of what we don’t understand. If we’re not familiar with autism or any other disorder, it seems terrifying to us, and makes us think that we can’t cope with it, while sometimes, it’s the other way around. My life did a 180 degree turn when I learned that Maks had autism. I re-evaluated my own life – I wanted to be a better father and husband, and I think that so far, I’ve managed.
I’m afraid to ask, but I will anyway. Is there anything likable about autism?
I once said that autism is beautiful, and people protested. How can it be beautiful, they said, if the children are banging their heads against the floor or the wall in stressful situations?
Autism is beautiful because it’s diverse: each of us is different, but autism brings a kind of mystery, which we’ve talked about already. We must learn about our children, learn about this autism.
We really must devote a lot of time to understand it and make the effort to understand this behaviour. And that’s what’s beautiful – the fact that we’re willing to spend our time on it, and the fact that autism can really be beautiful.
Do you have any golden advice for parents?
I avoid giving advice. All I can say is that having a child, with or without disabilities, can be inspiring. It can push us forwards and be beautiful. So don’t leave. Pull through.