General News
26 August, 2022
Father's Day: Support needed for dads with kids on the spectrum
As any new parent will tell you, babies and children do not come with an instruction manual. While countless books have been written about coping in the early months and years of a child’s life, most parents will admit they enter into this phase...
As any new parent will tell you, babies and children do not come with an instruction manual. While countless books have been written about coping in the early months and years of a child’s life, most parents will admit they enter into this phase of life with a mixture of fear, optimism and hope.
For parents of children on the autism spectrum, the challenges can seem even more daunting. Not only are they navigating parenthood, they have to learn as much as they can about a neurological condition that, until recently, was rarely discussed.
Lloyd and Jane Bond’s little boy Joe was diagnosed with autism when he was 18 months old. Four years on, and the couple have become experts at wading through a bureaucratic nightmare as they try to find the best support for their son.
“You become not only a dad but an advocate,” Lloyd said.
“When it comes to services locally there really aren’t any. After four years of trying, we have finally got services over in Ballarat. We have a behavioural therapist, a speech therapist and occupational therapist, a music therapist. We do two on one fortnight and two on the other.
“We only just started a couple of weeks ago. Because of COVID everything got pushed online. It’s hard with any child at that age to try and interact with someone over a zoom call, let alone one with special needs.”
While COVID restrictions have impacted the therapies on offer, Lloyd said lack of services generally has proved a major obstacle, particularly for people in regional areas.
“We had a speech therapist in Castlemaine but when she moved we got handballed to Sunbury. We did one face-to-face session which lasted about five minutes, we drove all that way and Joe just wanted to sit in the car so we had to take him home.
While Maryborough is known for providing excellent disability care for adults, parents of younger children are finding services either difficult to access or non-existent. As Lloyd explained, services they could access through the hospital stopped once Joe was diagnosed with autism.
“We were seeing a speech therapist at the hospital and did four sessions with her. It was really good but the moment we got our NDIS funding we could no longer see them,” he said.
“We had an OT who was based in Castlemaine then we got handballed to a lady over in Gippsland, so our two main services were over two hours away. That’s what a lot of people struggle with. As well as the time it takes to travel all that way, it all comes with a cost that comes out of the NDIS funding.”
As well as the challenge of juggling work and other commitments, Lloyd feels support can be difficult to find for fathers of children on the autism spectrum.
“There’s a lot of mother’s groups and parent’s groups but not really much for dads,” he said.
“There have been a few guys I’ve chatted with over the past couple of years since our son was diagnosed but there really isn’t a dads’ support group for special needs kids.
“When we’ve been in the parent groups, Jane has been the voice of the two of us, which seems to be common for a lot of couples.”
A Facebook page — Maryborough Autism Support Kinship (MASK) — was recently created for parents and carers in the local area. More than 100 people have already joined the online group, which highlights the need for support services at a local level. Lloyd is keen for others in the community to join and hopes from that to create a sub-group for fathers.
“I definitely think it is needed,” he said.
“It’s not just my mental health but also it can be a strain on relationships. As a father you are trying to help your partner as much as you can but sometimes our son doesn’t want that, he is quite happy having his mum all to himself.
“I know myself I find it a lot easier to talk with other dads or other men in general than when there’s mums in the group, the dynamics are completely different.
“So, what I’m really hoping for is a positive group where dads can catch up and have a beer and a chat about some of the issues and the shared experience.”
Video shares hope and encouragement for dads
While social expectations around parenting might have changed in the past few decades, it would seem that once a child is diagnosed as living with a disability, often the support structures revert back to the stereotype of mum as main care-giver. As pointed out by Lloyd, fathers can often feel overlooked when discussing the challenges and joys of parenting a child with autism.
Autism Awareness Australia has produced an online video to highlight the issues fathers may experience when parenting a child with special needs. Simply titled Dad, the video features 12 fathers who candidly share their experiences.
Autism Awareness Australia CEO Nicole Rogerson said the video aims to acknowledge the often-overlooked role of fathers.
“When children are diagnosed with autism, the support structures in place are often tailored towards mothers — but where does that leave the dads?” Nicole said.
“Sharing stories and experiences is how we learn and support one another, but there are few resources out there to support dads of children on the autism spectrum, who we know often have very different experiences to mums.”
The men come from all walks of life, including a neurosurgeon, rugby star, radio host and farmer. While some experiences are common among the group, their stories also illustrate the vast range of issues autism presents.
The men speak openly about their reactions when their child was first diagnosed. Some felt fear, confusion and anger. Radio host Ian Rogerson states “When you finally hear those words, it’s like a punch in the guts”, while former rugby player Mat Rogers shares “One of my first thoughts was ‘is he going to be able to play footy?’”.
A common thread among the fathers is the feeling of loneliness and the importance of sharing with others. Honest and emotional, the film also portrays the joy of parenting a child on the spectrum, as the fathers share proud milestone moments and discuss their very special, unique relationships with their children.
For more information and advice visit www.autismawareness.com.au/