Featured in Your Life

Posted in Articles, Blog, Press

Featured in Your Life

Click here to download PDF

Living with Autism

My daughter Nieve was diagnosed with autism when she was just two. After a short and successful natural birth she was suddenly rushed into the special care baby unit where she remained for two weeks. She had swallowed meconium. This is the early stool passed by a newborn soon after birth. This lead to a lack of oxygen to her brain. Was this the root cause of her autism or would she have been autistic anyway. It’s hard to know. Many children are born with autism, without undergoing any trauma.

I intuitively guessed Nieve was autistic. Certain behaviors stood out when she was very young. The distinct lack of eye-contact, not reaching out to be cuddled and never crying throughout the night. She seemed the perfect baby. However, as time went on, we could see the differences in her development.

Being very inquisitive, I embraced Nieve’s autism. I wanted to understand her strengths and weaknesses. I literally read everything I could get my hands on. I started to diarised many of her experiences.

One Saturday, we were coming out of a chip shop whilst it was raining very hard. I had no umbrella and was moaning about being wet. Whilst everybody was cowering under the bus stop, she stepped into the rain. The look in her eyes said it all; she was transported into a magical watery wonderland. Spinning with delight as she looked up at the sky.

Part of me was fascinated by the situation. What most people would consider as an inconvenience was simply magical to her. However, as a “responsible” parent you start to become self-conscious of other parents around you who are sensibly keeping their children out of the torrential rain. I tried in vain to get her to step back from the rain. Autistics like to do things on their own terms and have extremely cast iron wills. My calls to step back were met with very sharp and loud shreaks. If she hadn’t already drawn attention to herself, now the whole world was watching. In the end it was easier to join her in the rain and just head for home with very soggy chips.

Some members of the public are very well meaning but can get very cross or tut when a child acts a certain way. Especially when they look “normal” but are creating a scene. At first I hated using the ‘She’s autistic’ card but sometimes you do have to explain. Especially when you have a nine year old lying flat on the floor of Tesco’s kicking and screaming like a robot. All because a magazine was supposed to be in that day but simply wasn’t. When life works like clockwork, the world is great, when the tiniest thing is wrong, out-of-place or somebody appears they were not expecting, all hell will break loose.

Awareness around autism is growing all the time. There is room for improvement. Most members of the public have been very understanding, and it actually breaks the ice. People feel awkward when viewing a scene they have no comprehension of. A gentle chat does goes a long way, but most of the time the parent is under a lot of stress and simply wants the ground to open up.

Here are some of our experiences:

Names have to be just so.
One Saturday, we were coming out of a shop. It was raining again. Nieve immediately put her umbrella up. Unbeknown to her, a man had tailgated her out of the shop. The man was lucky not to loose an eye.
“Watch where you’re putting your umbrella, Darling!” the man shouted. “I’m not darling, I’m NIEVE!” she exclaimed.
The man was not impressed and walked off muttering to himself.

Girl falls of bike – Objects vs People?
I was walking in the park with Nieve when a little girl fell off her bike. The girl was shocked and started to cry. Her mummy quickly ran to her aid. By then, Nieve was also in hot pursuit. On her arrival and with real concern and emotion in her voice, she said, “Ah, poor bike!”

Pain or no Pain.
Nieve was happily playing on the roundabout in the local park. It was moving quite fast, with all the other children actively pushing it to go faster and faster. Suddenly, and without warning, Nieve decided to step off. It was still moving very fast. As a result, she ended up flying through the air. All the mums gasped in disbelief, in anticipation of a stressed and tearful child.
However, Instead of tears, she managed to land without a scratch on the grass. Where she became instantly fascinated and engrossed with all the many vivid blades of grass.