Susie O’Brien: Severe autism a burden that shouldn’t be ignored
SHINING a light on the appalling burden that severe autism puts on families may be uncomfortable but it’s also necessary, writes Susie O’Brien.
Susie O'Brien
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‘DON’T be sorry, be open to understanding.” Those are the words of one Melbourne mother who has a non-verbal son with severe autism. She’s designing her new home and is putting safety locks on the doors and installing lockable gates, reinforced walls and other security features.
Her son Ashton, who is nearly 13, is not violent towards others but hurts himself when he’s frustrated. He also likes to wander off, which is terrifying for his loving family.
“It’s confronting for people who don’t know us to see him banging his head on a table or floor,” his mother Natalie says. As she sees it, the more people are aware, the easier it is for everyone.
PEOPLE WITH AUTISM AND THEIR FAMILIES FACE SOCIAL ISOLATION
“I don’t want people to stare or be embarrassed by what’s going on. I want them to understand. We get a lot from Ashton — so much more than we had ever thought possible,” she says. “And yet this is my life. It’s not going to change. I don’t see why we should have to sweep it under the carpet.”
The same attitude led one Melbourne family to tell their son’s story on Channel 9’s 60 Minutes.
The Whelans struggle to cope with their son Max, 12, who is also non-verbal. He has unpredictable violent outbreaks, often towards his mother Liz. “It’s just part of my life now,” Liz says in the program, noting that he can lash out at her up to seven times a day. “There’s no conditions on our love for him, but there are conditions on our safety.”
Max’s siblings are scared of him, locking themselves in their bedrooms to escape his rages. His sister Georgia, 7, said she was scared of him and his brother Harry called him “crazy”. The Whelan family have raised more than $93,000 to convert their Mt Martha house into a secure home for Max, complete with 24/7 care. They say the NDIS may help, but at this stage there’s no government funding to provide what he needs.
It’s compelling viewing, because the Whelans’ love for Max shines through so strongly. They don’t want to give him up, but it’s clear the current situation can’t continue for much longer. It is a shocking, brutal and very honest insight into the lives of some families who have children with severe autism.
And yet, instead of being praised for their bravery, the Whelans were criticised by the organisation set up to support them. Before the story had even run, Amaze, the peak body for people on the autism spectrum, called it negative, demeaning and lacking in dignity.
“If Max looks back at this footage in 10 years’ time, how would he be feeling?” the public affairs manager Braedan Hogan told me. “In no way are we diminishing the experiences of the Whelan family. We have families often in similar circumstances talking about how the system is not meeting their needs and we do a lot of work supporting them.”
I disagree. Max is the Whelan’s son and this is their story to tell. I’ll bet it’s a decision they didn’t make lightly. The reality is that some kids with disabilities are dangerous to their loved ones. It is confronting, but unless you see it, it’s hard to comprehend what it’s like.
Medication doesn’t always solve things. Early intervention doesn’t always work. Some children — despite the best care — get so frustrated that they become violent. No family should be expected to be permanently on lockdown like the Whelans. At a time when so many lives are depending on NDIS funding, which has been very slow in coming, I applaud them for opening their doors.
Parents in the same position spoke out on the Amaze Facebook page in support of the Whelans.
“These are real struggles. Some of us live this way,” wrote one. Another, whose daughter is 18, non-verbal and incontinent at night, agreed that “those of us coping with individuals at the severe end of that need to be heard. Rose-coloured glasses to our reality does not help”.
These parents should be applauded for speaking out — whether it’s Ashton, who’s only a danger to himself, or Max, whose violence affects others.
Surely it will help them get the support they’re seeking to make everyone’s lives better and safer.
As Natalie says, it’s not about pity or judgment, it’s about understanding.
Susie O’Brien is a Herald Sun columnist.
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