Diagnosis Autism: Parents share their story

Autism…it’s one of the most common disabilities affecting Australian children today.
According to research updates  from Aspect Autism Spectrum Disorders, one in 100 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 Leah Osmond* 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 preschool 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, Matt, 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”.

Leah and Matt 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 vitamins 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 Matt more about autism and how to help their son.

“Charlie’s most important steps forward came because Matt 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 preschool. “

“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 Social Services (DOSS) 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.

Kids First Children’s Services’ experienced Early Intervention and Therapy team members have been providing Helping Children with Autism support to children since 2009. Find out about Kids First’s programs for special needs children here

For more information about the Helping Children with Autism (HCWA)  program, visit the HCWA website

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