Unseen, but ever-present

Coping with autism is as difficult for a parent as it is for the child – especially because, being a condition that is not immediately obvious to outsiders it tends to lag behind when it comes to empathy. Audrey Komrij Jones shares her experience learning to cope with her daughter Saskia’s condition with Jonathan Cilia.

“I am Audrey, a lawyer. I’m married to Jetze, a Dutch national who works in betting. Saskia is our beautiful four-year-old who likes puzzles, books and raisins. Saskia was born in Luxembourg, where we lived at the time. We moved back to Malta when she was around 11 months old. She was an alert, friendly baby who laughed her head off every time she the song Gangnam Style came on. She babbled and interacted. But she never pointed.”

Audrey Komrij Jones’s daughter has a condition that she shares with one per cent of the world’s population, give or take. It is one of a range of conditions that can fall anywhere on a spectrum; the autism spectrum, to be exact. The popular understanding of what autism really involves is rarely in tune with how diverse the behavioral and cognitive differences there might be in each person, and the proper form of communication with autistic people is virtually unknown.

“What we commonly understand by autism is when an individual has a social communication impairment and restricted, repetitive patterns of behaviour. The evident signs are usually noted in the child’s verbal and non-verbal language skills, social interactive patterns and play skills. These tend to deviate in these areas from the typically developing child,” explains child psychologist Denise Borg.

“A child who is on the spectrum may struggle to interact with ease with peers and this may cause a sense of isolation or confusion. Growing up may be a bigger challenge as the environment may not be fully-suited to meet the child’s particular needs, even with the support of those around them.”

The signs of autism develop sometimes come with some symptoms evident even at six months of age. Coping with a firstborn is hard enough, even with all the planning in the world. But the parents' life will rapidly, and drastically, change when autism imposes itself.

“During pregnancy, you stop drinking, smoking, eating the endless list of things which are a no-no. You start making sure you’re getting enough calcium and vitamins, lest your body decides you can lose a tooth or two to provide the baby with what it needs. You get through the morning sickness, weep silently at the fact that nothing fits. She has to be perfect.

“You get through labour or recovery, the sleepless nights and permanent exhaustion. You’ve become a mum. The anxiety and fear of having a baby that is anything but perfect has gone, she’s here, she’s beautiful, she’s healthy.”

“You get through breast feeding, or not. She moves on to solids, starts to crawl, starts to walk, says ‘mama’, interacts with you and you end up speaking to everyone in baby talk out of habit. She is perfect. Then,” Audrey stops, then continues.

“She stops turning when you call her, stops looking into your eyes, and forgets your name is mama. She is not perfect.”

After Saskia, or Sassy as Audrey and Jetze call her, turned one, things became unsettled. They had just moved back to Malta as a family and Audrey was keeping busy doing charity work.

“The moment I realised something changed is firmly stuck in my mind. I was trying to feed her – she was around 13 months old. But she just would not look at me. I held her face in my hands to try and look into her eyes but she just would not do it. Things got progressively worse. I would literally scream her name, and she would not even flinch. Yet, if her favourite cartoon came on she would dash to the TV. Alarm bells really rang when she started screaming in distress whenever she’d hear the song Gangnam Style.”

When Audrey did some research and sensory tests, it began to sink in. “Stating that my world came crashing down is not an understatement. When I was pregnant I would picture the conversations I would have with my little girl, and the funny things she would come up with. She was going to be talkative, witty and sassy... I tried to push it to the back of my mind for a few weeks and actually heeded the advice that people with good intentions would give me.

”She is just shy; all kids do that; she will grow out of it… I heard them all. But I knew that she would not, not without help.”

A silver lining of the early symptoms of autism is that, if detected quickly enough, effective treatment can be undertaken.

“How everything unfolds depends on the intervention and support around the person, as well as the severity of the condition,” explains Denise.

“Many go on to lead functional, full lives surrounded by a community of family and friends. Others struggle in a number of areas and may require support in adulthood. These days, increased awareness allows increased intervention and this creates a great difference in the future of these children. Speech and language therapy, occupational therapy and Early Learning Intervention can bring about positive progress in the early years that are the most crucial ones for real changes to occur.”

A child who’s on the spectrum may struggle to interact with ease with peers and this may cause a sense of isolation or confusion

If you think your child might have autism, Denise recommends being proactive. “If your child is diagnosed, get informed. Join support groups and speak to other parents. Do not travel the road alone because there are many parents out there who are dedicated, informed and involved.” Audrey agree with this advice.

“We had a check-up at the paediatric ward at hospital. As I sat there watching my 16-month-old complete a puzzle for four-year-olds, I looked around the room. There were children who could not walk, who could not sit up, who could not even smile. I watched their parents care for them and that was when it hit me. I could ignore it and push her into life without the tools that she needs or I could try to be a good parent like those who have harsher difficulties than ours.” That evening, she posted her story on the ‘Fun Loving Mums’ Facebook group.

“I was still hoping people would convince me that I was wrong and I was imagining things. Thankfully, they did not,” Audrey smiles. “This lovely child psychologist contacted me and, despite the fact that she was on maternity leave, she listened to me. She recommended a colleague of hers who specialises in autism, and meeting him was our turning point. Saskia was officially diagnosed with mild symptoms of autism when she turned three.”

“We started early intervention therapy when she was 18-months-old and I believe that that has made all the difference. We had two amazing therapists – Francesca Diacono and Jacqueline Abela Degiovanni, to whom I will always be grateful. Since then, Saskia has started applied behaviour analysis (ABA), which Hand in Hand has introduced to Malta, and it is literally changing our lives. Saskia is loving, and has learnt how to communicate. Her vocabulary skills are the equivalent of a seven-year-old’s, but she still needs to learn how to use language meaningfully. We will get there,” says Audrey with conviction.

Learning to live with autism is a challenge in itself, but one must continue and strive. “I cannot say that I’m okay with it all now. I embrace autism and I reject it. I am okay with it and I’m not. I do not care why it happened, but maybe I do.

The story appeared in last weekend's edition of Sunday Circle

Autism has made me brave, but it has also made me cry rivers of tears. It has made me hopeful and it has made me the biggest pessimist ever. My girl is broken, but she is whole. I hate autism, but it is part of my little girl, and it has made her who she is. As you can see, autism and I are in a complicated relationship,” she laughs.

“Things are okay for now, as Sas is a cute little girl. But, despite the fact that her prognosis is very, very good, she will be an adult with autism – and that is when the compassion tends to stop.

“Autism is not all about lining things up perfectly and being a genius. Many people react by telling me that the condition doesn’t show, when I point out why Sas will not reply to them, or why she will ignore their child. This is why I feel that we need to raise awareness. People tend to be kinder once they know about it. Autism is normal, but it is different. Understanding and patience can go a long way.”

Mindful of the weight that she carries on her shoulders, Audrey looks to the future with a steady hand and an informed mind. “As for those not affected by autism,” she concludes. “Remember that a kind smile will help a frazzled parent more than a look of disdain any day.”

Parents who would like to get in touch with Audrey can do so by sending an e-mail to aud300@hotmail.com.