My Journey 2011-2013

I could never understand why people that suspect they have HIV didn’t get themselves tested. In fact I still don’t understand why. Is it the fear of reality, the comfort of denial? Surely knowing is better than not knowing?  What if it was your child? You suspect they might be ill or in need of treatment, but do nothing to get them diagnosed. Wouldn’t that constitute child neglect?

If people close to you raise concerns that your child shows signs of diabetes, would you not have them tested for diabetes? Of course you would! It is a medical condition and lack of treatment could have dire consequences. So why, for the love of all things precious in this world, are parents reluctant to have their children diagnosed for Autism Spectrum Disorder? If your child exhibits behaviour that is different for a child of his/her age group, why not eliminate the possibility of Autism and move on? Oh, that right, there might be a chance that the child is Autistic and we prefer not to deal with that reality.

We all want the best for our kids, we want them to do well in school, play competitive sports and have lots of friends. We want people to like our children, because they are a reflection of us as parents. So what happens when little Johnny is disruptive, doesn’t want to listen, runs and shouts and screams like a wild animal? Children avoid him because he hits, bites and pulls their hair. When a trip to the grocery store ends in embarrassment because your child can’t behave himself?  What happens when speech therapy doesn’t help his delayed speech and when you struggle to find a playschool, swimming school or sports club that is prepared to accommodate your “busy” little boy? What then?

I am a mother of the most beautiful, almost angelic little boy. He truly is the most special little thing in my life. His skin is soft like a new born baby and his breath smells like apricots. When I think about him my heart swells and my eyes fill with tears, I just love this little boy so much. His name is Ben and in May 2011 he was diagnosed with Autism Spectrum Disorder. I was gutted! How is it possible? This beautiful little angel is perfect to me and now I have to face the hard cold fact that he has a neurological development disorder. One for which there is no cure. My dreams were shattered and I was angry. I already sacrificed my oldest son’s dreams due to ADHD and now little Ben as well. We decided to get a second opinion, this time a true expert. The diagnosis was the same.

And so the journey started. I can get all scientific about ASD, but for the purpose of this essay I would rather explain what Autism looks like through my own experience.

As a baby Ben responded well to deep pressure. When he battled to sleep I would place a hand on his back and one on his tummy and hold him firmly for a few minutes. He would relax immediately and sleep peacefully. His motor skills were fine and he crawled, walked and held things like a child his age should. He loved stacking and balancing things, blocks, fruit, and toys. He loved TV and was fascinated by trains and dinosaurs. The train fascination crew more pertinent and was obsessed with lining the trains up behind one another. Mother and child classes were a nightmare. Ben wouldn’t co-operate and hated going due to the restrictions to his will. We gave it up for a bad job and decided to look for a play school. Before he turned 3 he was rejected by two playschools, one swimming school and a junior rugby club. My feelings were hurt, but I kept on telling myself that these people just didn’t know how to work with a busy child.

After his 3^rd birthday I was blatantly aware of his delayed speech development, he didn’t speak at all and the few word he did say was in English and we are Afrikaans.  I had his hearing tested, which was fine and he started speech therapy. The therapy was a joke, Ben had his own agenda and not interested in what the therapist had in mind. After 3 months I decided that we were wasting our time and started researching ways of helping my late-talker (as they are known). Most of the information I came across referred to speech delay being a prominent symptom of Autism Spectrum Disorder. I shrugged it off, because clearly Ben wasn’t Autistic.

In March 2011 I went on holiday with my best friend to New York. It was a birthday present from me to me! We stayed in Time Square amidst the hustle and bustle of the most vibrant city on earth. The first shop I walked into was Toys R Us Time Square. At the entrance was a massive poster, about 5 meters high. The picture of the most beautiful little boy, soft brown curly hair and big dark eyes. The slogan at the bottom read: THE FACE OF AUTISM: Autism Awareness Month. I realised that what I thought Autism was, was not what I saw on the picture and I decided to have Ben tested the minute I got home.

By this time we were lucky enough to finally have found a playschool where our little boy was happy. The people at Kabouterplaas were amazing and caring and left Ben to do things on his terms. He could play were he wanted and join whichever class he wanted, when he wanted. He was very happy and content. After discovering what ASD is and how little Ben’s brain worked we realised that this exact environment where he seemed the happiest was the most dangerous to him. 

Let me explain: An Autistic brain is one that cannot learn through intuition, but through instruction. The brain has very limited flexibility and the more rigid the environment the more content and closed to learning the brain is. An autistic brain needs to be challenged to improve the flexibility in order for it to learn. It is this challenge that initiates the disruptive behaviour; it is an attempt to be left in its own world. The more you leave an Autistic child, the more rigid he/she will become. The more you encourage an Autistic child to challenge his/her brain, the more flexible and adaptive the brain becomes.  

It’s a very difficult and hard process, but with the right behavioural therapies and a good understanding and respect for Autism, challenging behaviour can radically be reduced.  

Challenging behaviour often stand in the way of the child's ability to learn and form relationships, this is my only motivation for helping my son with more appropriate behaviour. I respect that Autism is part of his identity and that I have to help him navigate a world that was not made for him.