I arrived in Holland in 1985. I was very young and starting life with my Dutch prince charming. Together we build a loving family. We had two sweet and smart daughters and love filled our home. But it wasn’t until the birth of our third child, that I learned the bigger (and better) life lessons. My son, Edinho, was autistic. He wasn’t “normal”, or neurotypical, as we say in the autistic communities. Being autistic means that he sees and experiences the world in a different way from ours. When he was little, my son could not bear the touch of anyone but mine. He also did not look into people’s eyes; he did not answer us calling his name and used to cover his ears with his hands whenever he heard the loud noises well. Instead of playing with peers, he preferred to stay in a corner, turning the wheels of his tricycle. He only ate soft consistency foods such as mashed potatoes, oatmeal and refused to eat anything harder to chew on such as meat, toast, apple, etc.
My son also had no feeling of danger. If the front door was open, the first thing he did was to run out the door and preferably straight to the middle of the street! It was terrifying. My family and I had a very hard time indeed. Countless times I needed to sit down and cry. So many dark thoughts crossing my mind such as: what’s going to be our future with him? How can we control his behavior so that he can stay with us and not at one of those outpatient institutions? Until one day, an angel must have whispered something in my ear. It was like an epiphany, a moment of reverie about the essence of life. If autism is forever and my son will not change, I got two choices: I’ll get stuck on self-pity, or I’ll face the challenge. That meant to go after anything that will give him and our family a sense of well-being. I’ve chosen the last one, a difficult choice but in every way worth it. In the process of facing the challenge, I had to let go of my pride and illusions we parents use to create towards our children, to think about what (really) matters in life. If you are a parent, you know there is only one answer: the happiness of our children. First of all, I started to think about what was good for him and not just for me. Everything started from there.
My son now is 16 years old. He is a smart, funny guy (autistic humor is the best) and a good friend of mine. Next September he will begin his high school exam year. He attends a school that includes students with autism – 45% have a form of autism. My son, diagnosed at three as severely autistic, not only overcame most of the “oddities” but also has become socially aware. Autism is a spectrum with varying degrees of intensity: a scientist brain and adolescent behavior; children who have never spoken, but who write books; intelligent adults, but who cannot interact at work or in a love relationship. They are all different, nice people, who don’t get often understood.
Lately, autism has been conquering its space on television, newspapers, magazines and social networks, especially. While a few years ago I had to explain in detail what autism was, now almost everyone knows what it is, or has heard something about the subject. That is good news! To understand autism, one needs a lot of information. More understanding equals more chances of inclusion.
I‘m privileged for having access to information that has been essential to the progress of my son, at the beginning of our journey. Living in a developed country with a favorable social structure, was necessary for the development of my child. I had the chance to attended conferences and workshops, as well to get professional help without costs. I had the opportunity to be the best specialist in my child. I’ve learned much, and I’m still learning every day. Every time I talk to other parents or autistics, I learn a little more about this awesome, intriguing Nature – the Autism Nature. There are many people with autism in the world. They are at the schools, at the office, in the family. All are different from one another but share the desire to be loved and understood exactly as they are.
If you or someone you love might have autism, consult a professional, do the tests, find out about therapies, methods, and interventions. Learn that what now seems to be a curse, may become a blessing someday. Every child with autism has the potential to develop. This development process teaches us – parents and therapists – wise lessons: we learn to love more, to have (more) patience, more tolerance, and less prejudice. Such lessons we will carry through life.
Sixteen years ago, I entered an amazing world that few people can understand. I am pleased to note that this is changing, gradually. Autism advocates all are forming an alliance of awareness. We are people who believe in a just world. A neurodiverse place where there are understanding, respect and inclusion of people with autism. The kind of world where everyone takes a step aside to give space for those who are “different, but no less” (Temple Grandin).
By Fatima de Kwant
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