By Aðalheiður Sigurðardóttir
I love autism
For me autism is beautiful, brave, funny, clever, and eager to learn. I love autism because she is my daughter. This feeling is so liberating, and I am so grateful to have found it. But it has taken some time and I fully admit that these first months after receiving the diagnose were coloured with feelings of fear and sorrow. I especially remember the moment as I sat at a café with my friend and said the words; I hate autism.
16 years ago I was overly excited when expecting my first child, and of course I had many thoughts in my mind how she would turn out to be. I had expectations and hopes. I hoped she would be healthy and happy. I hoped she would have many friends and that she would enjoy school. I imagined all those typical proud moments; her first steps, the ballet recital, first day of school, graduation, marriage, and me becoming a grandmother. A typical daydream from a mother to be, stroking her growing belly.
To my happiness my daughter was born a healthy baby and I was in love.
Our journey began in a sweet way and she was the source of my profound love but there were also many things I did not understand and struggled with. Many things that did not match to my perceived idees and expectations. She was different from her peers in many ways and all that was difficult I blamed myself for, and tried to set tougher boundaries, but there was always a little voice in the back of my head saying; there is something there, she is unique my baby girl.
I got that confirmed when she was eight years old when she was diagnosed as atypical autistic. Even though I had suspected this for a long time, and finally getting answers felt good, the diagnose came as a shock to me, and it was to affect me more that I would have anticipated for. You see, I felt relief that finally I would be able to find the tools and knowledge to help her, but the environment I sought help to, undeniable coloured my feelings so that fear and sorrow got the best of me.
Autism became my primary interest and maybe too much. Amazon has sent me quite some number of books and I attended all the courses and conferences I could find. I had the strong urge to understand. This process surely brought me knowledge I learned to be considered to my daughter’s experience. But this process was also coloured with a negative undertone saying that autism is a bad thing, and it will make your daughter’s life very hard.
I geared up and I was going to conquer the world, the lion mom awoke. I searched for solutions and training programs. I became determined to fix this in one day, so to speak. Obviously, my intent was to help my daughter, but I was at the same time sad and afraid. I remember this to be a very difficult period in our life, with my lowest point sitting in that café saying that I hate autism. I really felt that this word, autism, had become a dark cloud hanging over our family life.
It is not easy for me sharing these feelings today, but I do it happily if it can help others.
Shortly after, I read a blog called “Don’t mourn for us” by Jim Sinclair and it changed something inside me. I began reading more articles and blogs written by autistics, and more and more. I found videos on YouTube where autistics were talking and describing how they experience the world and the next books I ordered from Amazon were primarily written by autistic people.
This is when I discovered that autism is not a part of my daughter but intertwined in her personality and playing its part in moulding her into the fantastic person she is. Because of this, it is impossible for me to hate autism and love my daughter at the same time. Little by little my fear and sorrow changed to respect and acceptance. I learned that autism is, a way of being; a different kind of experience and perception. I learned that individuals on the spectrum live a meaningful and happy life if they allowed to be themselves and flourish at their own premisses.
I learned how to relax and I discovered that there isn’t anything for me to fix, but my own thoughts and expectations. I started to really listen and accepting all the knowledge my daughter gave me and this has been the greatest wisdom of it all. When I relaxed my shoulders and stopped running around searching for solutions, the magic happened. My daughter was also able to relax and we started finding our ways to communicate. When I felt acceptance, my daughter sensed it, and everything changed for us. She is now my mentor. I strongly believe she is always doing the best she can, and I am here to support her every step of the way.
Today, there is still much stigma on diagnoses. They are called labels, and often people are afraid of them and do not want to be associated with them, thus these feelings of sorrow and fear. I get it. My hope for the future is that we do not need diagnoses because we will become so better at seeing people for who they are. We will be accepting for diversity. We will stop focusing on behaviour and we will be able so see behind it and show compassion and allow all feelings. We will live in a more loving community.
I believe we are on our way, but in the meantime, I think of diagnose, not as a label, but as a guide to a better quality of life. A life filled with respect for one’s challenges and strengths.
My daughter is healthy and happy, just as I hoped for. I have experienced so much more a-typical proud moments that I would ever have dreamed of. All that matters is which glasses I choose to put on each day. I choose to see and enjoy our beautiful, atypical life.
Adalheidur Sigurdardottir is a speaker, consultant and proud mother of two unique children who have motivated her to educate the society about neurodiversity. She is a motivational and educational speaker about autism, relations and parenting. She also works as an adviser for parents and teachers on how to build successful relations and help kids to feel save and ready to learn. She studies to become an EQ therapist at EQ institutt in Oslo. More information at www.egerunik.is or www.jegerunik.no