Autism…it’s one of the most prevalent disabilities affecting Australian children today.

According to a report conducted in 2007 by the Australian Advisory Board on Autism Spectrum Disorders, one in 160 Australian kids under the age of 12 have autism.

But what is it like for parents when their child is diagnosed with this disability?

“I just felt numb,” said Therese Curran* whose son, Charlie was diagnosed four years ago at the age of three and a half.

“We knew something was wrong because Charlie wasn’t playing with the other kids at pre-school and tended to get a bit physical when things didn’t go his way, but we had no idea that his very limited diet and repetitive play routines were all traits of autism,” she said.

Therese said that she and her husband, Glenn, were devastated by the diagnosis, which came as a complete shock.

“We went to the doctor expecting to be told that Charlie had ADHD – so the Autism diagnosis came like a bolt from the blue. All our dreams for our son went out the window and it took us time to get our heads around the fact that he had a lifelong disability that would change everything.”

Therese said that after the initial shock, she went into ‘mother’s overdrive’, searching out as many treatment options as she could to try to help her son.

“I read as much as I could and found out that Autism Spectrum Disorders are a group of conditions that affect kids who have difficulties with communicating, problem-solving and social skills. Sometimes they also have obsessive or very ritualistic behaviours, so Charlie’s tendency to arrange his toy cars in straight lines started to make sense.”

“I found out that many kids with autism have trouble transitioning from one activity to another and are very fixed in their ways. This was certainly one of the main problems for Charlie at preschooI.”

“I also discovered that the spectrum can include autism, Asperger’s syndrome or Pervasive Developmental Disorder and that the severity of the disorder can range from mild to severe and so I spent lots of time trying to work out where Charlie fitted in”.

Glenn and Therese spent two years searching for answers for Charlie and found that some children, like their son, have limited language, while others do not speak at all. They began to understand Charlie’s struggles to communicate his social and practical needs better and learned that his difficulties with nonverbal aspects of communication, such as gesture, facial expression, tone of voice and eye contact were common.

“We tried every treatment we could, putting ourselves on waiting lists for lots of doctors and taking appointments with whichever ones came up first,“ Therese said.

“We tried injections of vitamin B12 to improve Charlie’s language, but they just made him throw up. We also rubbed creams into his skin to address his chemical imbalance and changed his diet, removing all traces of dairy and gluten in an attempt to enhance his cognition. I know that these things work for many children, but in Charlie’s case, we just didn’t see much of a difference because he still had difficulty reading the emotions and reactions of his peers and this made social situations awkward and stressful for us all.”

The breakthrough for Charlie came when he was accepted by a multi-disciplinary children’s service where he started to receive Speech Therapy, Occupational Therapy and attend weekly social skills groups.

“A new funding program called Helping Children with Autism was released by the government and that made it more affordable for us to start getting the individual help that Charlie needed,” Therese said.

“Because he was under the age of seven, we was eligible for up to $12,000 to help pay for autism specific support, so we began as quickly as we  could and since then, Charlie hasn’t looked back.”

Therese said that Charlie the cohesive support Charlie received not only gave him the skills he needed to interact appropriately with his peers, but also taught she and Glenn more about autism and how to help their son.

“Charlie’s most important steps forward came because Glenn and I were able to attend his therapy sessions and learn strategies that we could use at home. We were also able to be more informed about his needs and share vital information with his pre-school. “

“When everyone was working on the same page in partnership with us, he just blossomed,” Therese said.

Charlie now attends a mainstream school and the family is positive about the future.

“When Charlie was born, I could never have imagined that we would go on this journey,” Therese said.

“Early intervention was definitely the thing that made the difference for my child and although we know that our child’s path might be different to that our neighbours and friends, we know now that if we stick together and seek out good support, we’ll all be fine.”

*Names changed for privacy

Helping Children with Autism is an initiative from the Australian Government’s Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) which gives children diagnosed with autism aged 0-6 access to funding to support Early Intervention from accredited multi-disciplinary services that specialise in support for children with special needs. For more information, visit the Helping Children with Autism website

Do you have or know a child with Autism?  If you’d like more information on strategies to manage Autism, leave a comment below and Sonja will write a follow up post to provide suggestions and ideas on helping your child deal with Autism.

Image courtesy of Shutterstock.com

  • An interesting read, thank you for sharing.

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  • A young autistic boy was in my daughters class at school. He needed a teachers aid just for his care as he needed constant supervision. And they still lost him on one school excursion, scarey stuff

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  • My son was diagnosed with autism just after he turned 3. He was able to access the helping children with autism funding which was used for speech therapy and occupational therapy. We also bought him an ipad using the funding as it helped improve his poor fine motor skills, eye/hand coordination and it was another way for him to learn colours and shapes. He also went to an Early Childhood Development Program run by Education Qld before he started school. He learnt things like taking turns, sharing, social skills, toileting, hygiene, etc. Both the funding and the ECDP made a huge difference to him and he now attends mainstream school with some assistance.

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  • Such a moving story. Thanks for sharing.

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  • My husband has aspbergers, its a real possibility that our son may have it too. Thanks for sharing.

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  • I find the information in this article a bit outdated an misleading. It’s estimated that 1 in 100 children in Australia have an Autism Spectrum Disorder. There is no evidence that gluten/dairy free diets have any benefit for children with Autism. They may actually cause more harm as they will further limit often already restricted diets. Injecting children with high doses of vitamins is dangerous – and has no benefit unless a child has a diagnosed disorder that affects their vitamin levels. Applied Behaviour Therapy is the most affective form of therapy for kids with ASD – doing an hour of occupational therapy and an hour of speech therapy per week will not be enough for the vast majority of kids with ASD, to help them cope in mainstream schools and become independent adults. Helping Children with Autism funding is also being slowly phased out as the National Disability Insurance Scheme is being rolled out. The NDIS funding is based on each child’s needs – not their diagnosis – so it’s important for parents to educate themselves about what their children’s needs are and the most effective therapies as the funding amounts can vary greatly.

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  • A touching and very informative article, thank you for sharing.

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  • What an inspiring read. Helps me to understand my friend’s struggles with her child more.
    Thanks

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  • Interesting read. Thank you. I think that one issue we have is that mothers are often not believed and treated like hysterical people by the medical fraternity. I have a child who exhibits a lot of traits of autism but no one will recognise it in him. I don’t care if he isn’t or is, but I want him to get the help he needs as there is clearly an issue or two in his behaviour and development. Unfortunately, I have tried for too many years to get help. But because he appears not highly autistic no one wants to know. So how do you get help for those kids who have some form of special needs but people aren’t worried about because they function well enough?

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  • Very inspiring – thank you for sharing

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  • Charlie sounds like my son. I knew there was something not right about him and thought he had autism. But to hear it officially was heart breaking. He was able to access help through the autism funding which made a huge difference to him and his future.

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  • What an inspiring story ..thank you so much for sharing ..
    Very informative and very helpful.

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  • My centre has a child that we think has autism but mum refused to have her child to be diagnosed.

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  • Wow, my son is 6years old and has always been an outside child and well he is a boy hes always been rough with us. well that is what we though until Tuesday the 10/2/15 we have been told he has ADHD. i have no idea how i feel how he feels how to deal with this or what to say. if anyone has info please i would love to hear it read it and see it all.

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  • How inspiring. Thank you for sharing. A great read and very informative.

    Reply

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