Charlie

This month is Autism Awareness Month. It's an opportunity for the community to seek a better understanding of those who suffer from an Autism Spectrum Disorder (ASD), like our four year old son, Charlie.

Charlie did not speak for the first three years of his life. He did not even babble.  He did not play with other children. He took comfort in repetitive behaviours like opening and closing doors and flushing toilets. The experts call this stimming. He stimmed for hours. Literally.

Charlie was terrified of having his hair washed or cut and would appear to be possessed by a demon whenever he thought someone was going to subject him to such torture. He would not watch children's programs on television, but delighted in viewing the Foxtel Help Channel. He taught himself how to use the remote control and watched his favourite bits over and over again for hours. Literally.

Charlie often experienced dramatic meltdowns, both at home and in public. He would scream and bite, out of fear that some harm was coming to him. He had no way to communicate to his parents his many fears about the terrifying world around him. Camilla became covered in bite marks and scratches. Elderly strangers would frown and tsk tsk  at her, suggesting that she impose a little discipline in her parenting, like they did in my day!

Charlie would look for doors and other escape routes and run like Forrest Gump whenever he got a chance. He would just run. Hard and fast to nowhere in particular. Straight towards busy roads.

Charlie would only eat certain foods and only wear blue shirts.

Just after his second birthday, Charlie was formally diagnosed with ASD. It is a neurological disorder. His brain is wired differently to the neurotypical child. There is no cure and much debate as to the cause. Medical science knows comparatively little about it or how to treat it.

Camilla and I were devastated but determined. We read as much as we could and sought out people who had been down this rocky road before us. He was our precious baby boy and we would do whatever it takes.

We discovered that the medical world was trumpeting a therapy called Early Intervention. When the autistic child is aged from around two to six, the brain is still malleable and developing. An intense program of speech therapy, occupational therapy and several other therapies can assist the brain to develop in a more neurotypical fashion. The changes can be permanent and result in a lifetime of difference.

This gave us hope and we searched for an Early Intervention Centre in Brisbane. We had vaguely heard of a place called AEIOU through its advertising and discovered it in our web searching. It seemed good. Damned good. It had a very long waiting list but we quickly joined the end of the queue.

At the beginning of last year, Charlie started at AEIOU. It is good. Damned good. Charlie is doing remarkably well. We have a different son. He now speaks in rudimentary sentences.

AEIOU stands for Autism Early Intervention Outcomes Unit. It was established by a couple called James and Louise Morton. James is an oncologist and Louise is, by all reports, a sheer force of nature. I have not yet met them, but admire them greatly. James and Louise themselves have a boy with ASD. A few years ago he was placed in a Government trial program and did very well. However, the Government ceased funding the program and the centre closed. James and Louise then decided to fight autism themselves. They used their savings to buy an old church at Moorooka and set up a new program to replicate the one the Government had jettisoned. Their son got the benefit of it for a few short months, until he started school.

AEIOU now has a number of centres across Queensland which are helping Charlie and around 200 other little angels just like him. The staff to student ratios are high and the staff are dedicated. AEIOU provides tremendous support for families and even helps ASD kids to transition to mainstream schools with follow up support. It adopts a holistic approach, but not in a hippy trippy way. In a practical way, hour after hour, day after day. The program is intense and in order to succeed it demands long weeks for little children. Charlie loves the place.

Autistic kids are beautiful. Charlie is affectionate and full of personality. He is handsome and clever. He is by no means a lesser person; just different.

A year of AEIOU has produced a transformed boy, but he is still autistic. Charlie still escapes and runs, still has meltdowns and still fears many aspects of the world around him. But he can now tell us about his fears. He can tell us that he is afraid to enter a room because the toilet seat or piano lid may be down. Camilla will then take any necessary action to correct the offending object and assure him that has been done. Together they will enter the feared area of the house and Charlie will relax knowing that all is good in his world for the moment.

Charlie now plays around other children and talks about them. We are confident that he will start playing with them soon.

It's extremely hard being away from home, leaving Camilla to fight the battle against autism without me. Camilla is a remarkable woman and is doing a sterling job. I proposed to her after two weeks with little hesitance and the confidence of youth. I have never regretted the decision and am privileged to be her husband.

Charlie will attend AEIOU for the rest of this year and then, hopefully, transition to mainstream school. I am determined to be there on his first day. Holding his little brown hand. Hopefully, I can let his hand go for a second or two and he will remain standing by me and not run. If not, I'll run after him and catch him.

Charlie is now visiting my parents in Toowoomba for a few days, to give Camilla a well-earned break. My parents and Camilla's mother have been tremendously supportive in fighting the good fights against autism and heart failure and Charlie loves them dearly.

We are lucky. I earn enough money to enable Charlie to attend AEIOU. Autism affects one child in around 140 so there are plenty of Charlies out there. Many are born to families that cannot afford Early Intervention. That is sad and wrong. It's a genuine tragedy. I hope we get it right with the new National Disability Insurance Scheme the Australian Government is putting together. We simply can't afford not to.

Check out AEIOU at aeiou.org.au. Send them lots of money.


Until next time,