Support for autism carers falls short

Families and counsellors who dedicate time and energy caring for children
with Autism or Asperger’s Syndrome say support services are few and far between. Autism Spectrum Disorder (ASD), which both conditions fall under, affects 1 in 88 people. Parents and health care professionals are finding that few resources are available to help them cope.

Justine Watson has a 12-year-old son with ASD and is a counsellor within the field. “There are accessible services for kids with ASD, although
many are too expensive,” she said. “The support services for parents and carers are highly inadequate.”

Nelle Frances has worked in Special Needs education for 16 years and has a 22-year-old son with Asperger’s Syndrome. Using her experience, she
will be running a workshop on how to handle difficult ASD behaviour, both in the classroom and at home. “The workshop has a number of exercises to help those who attend change the way they think of a child’s
behaviour and handle the situation better.”

Ms Watson said counselling has helped her cope with the exhausting mental and physical challenges. She also finds comfort in friends who have kids with ASD since they “get it,” as many do not understand the challenges involved.

Ms Frances agreed that without much-needed support groups, parents can often feel isolated as there is not enough funding and national advertising to assist the wider community in understanding ASD behaviour.
“We should be able to take our kids out without people thinking we are bad parents,” she said.

“They need exposure to materials that explain a child’s behaviour, such as how a ‘meltdown’ is simply when the sympathetic nervous system takes over and resembles something like a tantrum.”

But Carol Grigg of Asperger Syndrome Partner Information Australia (ASPIA), said the condition is not just difficult for parents. She was married to a man who, 17 years later, was diagnosed with Asperger’s
Syndrome. “My husband’s diagnosis came in 2000 after a very confusing and stressful relationship and family experience,” she said.

“The story of an affected family will be quite inconsistent to what those on the outside are observing, and often the claims of the spouse
or children are discounted or disbelieved, eventually leading to family breakdown.”

Ms Frances’ workshop will take place on June 26 at Surry Hills Neighbourhood Centre.