CARING for a child with autism is not easy, but the toll it takes on the parents is often unnoticed, according to the founder of a new Hawkesbury support group for parents who have children on the spectrum.
Hawkesbury resident Peta Jones has joined with the Autism Community Network to start a monthly support group, which will meet for the first time on May 10.
Jones said one of her children was on the spectrum, and she had found it very confronting.
“Our journey was not an easy one to start with and in that early phase I really felt isolated,” she said.
“To leave the house to do the simplest thing such as go to the bank or do the shopping was not easy, it always played out the same way.
“My son was in sensory overload, he screamed, rolled around, twisted, turned and to those who did not realise he looked like the naughtiest child on the earth.”
Jones said it was difficult for people to understand what she and her husband went through.
“The comments that were made to me, the hurtful derogatory remarks, the stares that said more than words - it went on for years and still does,” she said.
“The lack of understanding and ignorance surrounding autism is what could have crippled me but we have kept going.”
Her experience bringing up a child with autism convinced her a support group for parents was necessary.
“Often as an autism parent you feel isolated, you feel like you don’t know where to start to look for information,” she said.
“You feel that you are flailing as no one seems to ‘get’ your situation.
“No one understands and can support you like another person in a similar situation can.”
The Autism Community Network’s Steve Drakoulis said he was stoked Jones was prepared to start up the group in the Hawkesbury.
“Conservatively speaking, one in 100 children today are being diagnosed with autism, which is 1% of the future population,” he said.
“If we don't get it right, their quality of life will suffer and become a burden on the community.”
The ACN’s operations manager said when it came to children with autism, the parents were often forgotten about.
“One thing I see is adults whose mental health is suffering because there is nothing out there for them,” he said.
“The focus is usually on early intervention and for children but teenagers and adults don't really have a lot for them.”
Jones said the group’s purpose was to create a community of parents who could support each other.
“The group is run for parents by parents. The group will be a safe place for local parents to meet and connect with each other sharing and supporting each other,” she said.
“The group will also be a place to find information, find out about local service providers, events and resources.
“Whilst there will be formal information sessions, the majority of the time it will be informal and a chance to debrief, listen, and share.”
Jones said for more information e-mail firstname.lastname@example.org or ring 9543 9036.
Meetings will be once a month, and hosted at the Richmond Golf Club on the second Wednesday of every month from 10am to noon.