Critical shortage of support services for parents raising children with autism

Aug 17 2004

A critical shortage of support services for parents raising children with autism has been confirmed by UTS research, highlighting a need for drastic reform.

The findings come hard on the heels of controversy over the tragic death of autistic ten-year-old Jason Dawes at the hands of his mother, who had received only three of the 20 hours per week of early intervention that her child needed since the age of 18 months.

Autism is a brain disorder that begins in early childhood and persists throughout adulthood; affects three crucial areas of development: communication, social interaction, and creative or imaginative play. It affects one in 100 Australians, but according to Dr Andrew Cashin who carried out the research and is a registered mental health nurse practitioner, community awareness of the disorder remains low and there is an urgent need for funding support for affected families.

Dr Cashin said he discovered there was little research into how Autism affects families while working as a part-time counsellor with the Autism Association of NSW.

"There is decades of research into Autism as a disorder but little published research into parents experiences with children with autism and almost none available for parents caring for young children," Dr Cashin said.

"This great gap in our understanding and ability to respond appropriately to benefit affected children prompted me to research this area for my PhD with UTS' Faculty of Nursing, Midwifery and Health.

"Early diagnosis and intervention is essential to ensure that families and carers have access to appropriate services, such as specialised education, counselling and professional support.

Dr Cashin said funding doesn't match the needs of families caring for children with autism, which means they end up feeling abandoned and endure either diminished social contact or sometimes, total isolation.

"It's not surprising that family relationships suffer, family members become exhausted, anxious and may experience depression," he said.

The research has prompted new community initiatives to help combat the problem including an education forum that was recently held on the NSW Central Coast.

"Janet Millhouse, Principal of the Central Coast School for Children with Autism and I organised a forum to better equip grandparents and less immediate relatives of children with autism to assist and provide relief to parents," Dr Cashin said.

"I have also started a counselling practice for children with autism and their parents in Terrigal. It is extremely rewarding working with individuals who have such a very unique thinking and learning style."

"Adding another dimension to the body of research has now made it possible for parents to relate their experiences with other parents while also providing insights for health professionals needing to understand these experiences. It can also be used as a basis for seeking funding and developing service provisions."