Maxwell's fight for her son

Chloe Maxwell with her son Max.
Chloe Maxwell with her son Max. 

Chloe Maxwell's autistic son, Max, is her "precious gift" - and her great challenge. She tells of her tearful journey to try to understand the world he lives in.

Max's second Christmas was spent in Woy Woy, on the NSW Central Coast, with my dad's family. We made the trek down. Dad and his second wife, Jo, had rented a house right on the bay for all of us to stay in. Max was obsessed with water, dripping taps in particular. Often I would call out to him and get no answer, then walk around the side of the house to find him watching the tap - drip, drip, drip - and plugging it with his finger every few drips. I was constantly trying to cover for Max that Christmas. If anyone directed any questions at him, I would answer them for him every time. I tried to stick him in front of a DVD as much as possible so his strangeness wouldn't be as noticeable.

Max always seemed to have a glazed look in his eyes, whereas his cousin, Cooper, who was around the same age, engaged with everyone. He would tell stories, he would laugh; he had a very impressive knowledge of cows and cowboys and guns. Max spoke, but it was another language. Gobbledygook, I called it. It didn't make sense and it was never really directed at anyone, as Max wasn't in the habit of looking people in the eye. I could see a big difference in development between Max and Cooper and it frightened me.

One night when we were all sitting around the campfire, Dad pulled Mat [Maxwell's husband Mat Rogers, who played rugby league and rugby union for Australia] and me aside: "I wanted to speak to you both about Max." I gulped and directed my attention to the campfire shadows licking at the roots of the surrounding trees. I imagined the surrounding bush suddenly engulfed in flames and my relatives running for the water in terror.

"I have some serious concerns about his development."

I would find myself greeting other mums on the way out with tears on my cheeks, scratches on my face and the pain of helplessness in my eyes.

The flames began to lick at my heels and dance up my legs; my face turned the colour of fire. I turned and looked at Mat. His face was hidden in darkness so I couldn't see his expression. I turned slowly back to this devil in my father's clothing.

"I've done some research and I believe he may be autistic."

Suddenly my whole body was on fire with rage; the heat was unbearable. "What are you talking about?" I shouted from the depths of flaming darkness. "There is nothing wrong with my little boy! Why are you saying this? Because of Cooper, because he can talk better than Max? He's four months older, that's all - he ... he ..." My larynx had swollen as though I was being overcome by smoke fumes.

I felt Mat's strong arms embrace me, holding my arms down to prevent me from flailing wildly at my father. I wanted to hurt him. I wanted him to feel the pain I was feeling. My daddy was hurting me so much. I don't know what words came out of my mouth then, but they were hateful and hurtful.

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Tears began to put out the fire in my face as I looked at my dad, his blue eyes glistening with sadness in the dark. Jo stood next to him, afraid to look at me. Her eyes were fixed on the ground and streaming with tears. The angry words spurting from my mouth subsided as Mat spun me around to look at him. His face was contorted with sadness.

"I agree with your dad, darling," Mat said hoarsely. "Max isn't the same as other kids, Chloe. I've felt that for a while, but every time I've tried to talk to you about it you've gotten angry and shut me down."

I could feel the pain running through his strong, tattooed arms. That strength couldn't help him with this fight. My bottom lip was quivering uncontrollably.

"We can't keep ignoring this!" Mat broke down sobbing and so did I, as we both came to the realisation that we - or rather, I - had been in denial all this time.

As soon as we got back to our home on the Gold Coast, I booked an appointment with a paediatrician and I began to read. Dad and Jo had given me the Australian Autism Handbook by Seana Smith and Benison O'Reilly, which I found invaluable. I scoured the internet for any information I could find on autism. I knew very little about it. All I knew was taken from watching Dustin Hoffman's performance in the 1988 film Rain Man, and I did not think that was Max.

Even though I certainly didn't want to concede that Max might be autistic, even I had to admit that he was a difficult child. He was 2½ now, and he had the most incredibly violent tantrums. Having no other example to go by, I thought this was standard behaviour for the terrible twos. And being pretty strong-willed myself, I just thought that he took after me.

He would not answer to his name, no matter how much I shouted at him. He wouldn't even turn around and look at me - it was as if he was looking out into another dimension.

After a paediatrician confirmed a diagnosis of autism, Max was referred to a Gold Coast facility called Little Souls Taking Big Steps, an early intervention centre for children with autism.

This was the real beginning of our fight for our son's identity. Five days a week, Monday to Friday, I would drop Max off at Little Souls at eight in the morning. At first he absolutely hated me leaving him. It was such a new environment for him and he really did not like unfamiliar people or environments.

Every morning we would pull into the car park and Max would realise where we were straight away. "Noooooooo!" He would begin to writhe and moan in his car seat. I would undo his straps and he would scramble across to the other side of the car. I would run around the back of the car only to find he had crossed over again. This would go on and on, until finally I would just lean across and grab him by his T-shirt. I would pretty much have to drag him into the building and try to wrestle open the door while carrying Max and his school bag as well.

Once signed in and inside the kindy room, he would immediately go and find a table and hide under it. The therapists told me that this would be where he would remain for several hours, not moving a muscle, as though he were in a self-induced coma.

The school had one big kindy room where typically developed kids and autistic kids mingled together. They all practised what they call "functional play" with each other and ate their lunch and morning tea together. I thought this was fantastic: I wanted Max to have some typically developed role models to imitate.

The autistic children in the centre also had their own individual rooms to which they would be taken for one-on-one work with their therapists. Max's therapist would practically have to surgically remove him from under his table in order to coerce him to the therapy room. Two therapists were assigned to each child and they would work with the child separately, one for two hours in the morning and one for two hours in the afternoon.

The therapists at Little Souls practised applied behaviour analysis (ABA) therapy, which was much criticised in the autistic community - wrongly, I believe. Some professionals did not agree with the way ABA therapy relied on positive reinforcement, rewarding progress with treats such as cookies, lollies and chips. I say whatever works, and work it did. After the first few weeks my little boy was coming along in leaps and bounds. I do know that this sort of therapy is not necessarily beneficial for every child on the autism spectrum, but it worked absolute miracles for our son.

One of Max's therapists was Carla, who was the sweetest girl. He really warmed to her straight away. I liked her because she was so warm and patient with him. His other therapist was Maria, who was Greek. I remember one day I was playing with Max and we had just put together a train track. "All finished," I said. He looked me in the eye and replied, "Vary good!" in a distinct Greek accent.

The next day I took him into the kindy room, where he was greeted by Maria and taken to the bathroom. Upon finishing I heard Maria say, "Vary good," in exactly the same tone. I chuckled to myself and wondered if my little boy would one day develop his own tone and spontaneous sense of humour.

In those first days at Little Souls, some mornings were a nightmare for Max; he would have the most incredible tantrums and screaming fits. I would find myself greeting other mums on the way out with tears on my cheeks, scratches on my face and the pain of helplessness in my eyes. I would smile and greet them and they would nod back with a knowing flicker of understanding. Those telltale gestures helped us comfort each other without even having to say a word. Words were not necessary among these women, and for that I was so grateful.

I was sick of words: they reminded me of their absence in my son.

Other days Max would be great and it would be another mum wrestling with her child in the car park. Often a mum could be found in the kindy room pinning down their child with the help of a therapist while tears streamed down their cheeks and the child writhed in anger and confusion. It was all part of the process. Patience was something all of us mums with autism spectrum disorder kids had to learn.

Progress does come eventually, but a plateau in development can follow closely behind, so the process can be long, drawn-out and painful. It's been said that success is not a destination but its journey. The bigger the struggle in that journey then the bigger the prize, I reminded myself over and over again through those early days as we fought to draw Max out of his bubble.

Every week Max astounded me with big leaps in his speech. They would have been considered pretty average leaps for a typically developed child, but for me they were huge and beyond anything I had hoped for. Part of the parents' commitment at Little Souls is that they sit in on two hours of therapy a week and attend a fortnightly meeting to assess the child's progress. One of my first sit-ins will stay in my memory for life.

Max's therapist at this session was Maria, the very friendly Greek woman. I really liked her. "Okay, Max has been doing very well these last few weeks," Maria said as she shuffled through her row of files next to Max's little desk.

"We're going to do some social questions now," Maria said, finding the file she was looking for. My heart skipped a beat. These were the standard, everyday questions that you would ask a child of his age and expect a response: "What's your name? How old are you?" and so on. The very same questions I had been answering for Max his whole life.

I had always struggled with the fact that just about every day, we would be in a situation where complete strangers would ask him, "What's your name?" And every day I would answer for him when his silence was too much to bear: "Max, his name is Max."

I would try to smile politely as the stranger continued on with their day, but inside a part of me would die. I felt like a failure because my son could not answer that one simple question. I held my breath as Maria began.

"What's your name?" she asked and I bit down hard on my tongue. It had become almost a reflex for me to answer that question for him. I waited anxiously.

His little face looking straight at Maria, my child answered, "Max."

Our little boy had said the word, the most beautiful word in the world. His name.

This is an edited extract from Living with Max by Chloe Maxwell (HarperCollins), to be released next week. For every copy of the book sold in Australia and New Zealand, the author and publisher are making a donation to 4 ASD Kids, a charity that helps autism spectrum disorder children and their families.

Article originally appeared in Sunday life