Australian Program criticized for “undignified” portrayal

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ASPartOfMe
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16 Jul 2018, 12:33 am

Family responds to backlash following 60 Minutes segment on autistic son

Quote:
THE family at the centre of a recent 60 Minutes segment has spoken out about the backlash the show received after being aired on Sunday night.
Victorian parents, Liz and Sean Whelan, have responded to claims that the Channel 9 program was “undignified” and “demeaning” towards their 12-year-old son Max.

Max has severe non-verbal autism as well as an undiagnosed intellectual disability, which often makes him prone to unexpected and violent meltdowns.
He lives at Mt Martha on the Mornington Peninsula with his parents and three siblings, who have all been targets of his destructive outbursts.

To demonstrate how severe these meltdowns can be, several videos of past incidents were aired during the program. The camera crew also captured their own footage of Max acting violently towards his mum..

As if to underscore just how difficult things have become, our cameras are rolling when Max suddenly goes into meltdown,” presenter Liz Hayes said as footage played of Max crying and hitting his mum.

“It’s disturbing to witness, and it’s clear that something has to give.”
Peak autism organisation, Amaze, criticised the segment in a post on its Facebook page, saying the way Max was portrayed was not only harmful to him but other autistic people.

“From the limited footage we have seen, Amaze is concerned that autism will be reported in a negative light, demeaning language will be used and that the autistic child concerned will not be represented in a dignified manner,” the organisation wrote.

“The media need to have greater respect for autistic people’s dignity when reporting about autism, and also not perpetuate common myths about autism.”
Liz and Sean have since responded to these comments, saying their decision to go public with the story was to raise awareness and help other families going through similar situations.

This story wasn’t an easy watch for everyone, including our family, and we would like to reassure you that Max did not watch the program, nor was any money exchanged for it,” a statement on Liz’s Facebook read.
“We wouldn’t ever have agreed to sharing our story publicly if we thought for a moment that Max would be negatively impacted.”

Fiona Sharkie, CEO of Amaze, told news.com.au that though they support families sharing their stories, they were disappointed by the way 60 Minutes chose to portray Max.

“Amaze strongly believes we need to see and hear the stories of autistic people with high and complex support needs, so that we can advocate strongly to ensure that they are getting the services and supports they need, but it must be done in a dignified manner,” Ms Sharkie said.

“Often when these stories are shown it can be upsetting for autistic people and others in the autism community — and we have a responsibility to let them know in advance.”

Max was diagnosed with autism at 20 months old, and since then he has been through almost every treatment possible.

Countless therapies, specific diets, oxygen chambers, medication and homoeopathy are just some of the many treatments the family has tried.
With no facilities or government options available to cater to Max’s specific needs, Liz and Sean have come up with their own plan to help their son get the care he needs.

Sean’s sisters set up a GoFundMe page to help them convert their family home in a care facility for Max.


The promotional clip in the article was sensationalist, reminiscent of Autism Speaks video’s from the 2000’s. Amaze noted they had seen limited footage which probably the promo clip. Below is the entire program. I will comment on it later after people have seen it.

Maximum Love - Living with Severe Autism
Part 1
https://youtu.be/e9CgwJSpNfI

Part 2
https://youtu.be/By0fryNzhro

Part 3
https://youtu.be/7By-YZfDWFo


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MrsPeel
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16 Jul 2018, 5:46 am

I just watched all 3 parts and I can see both sides to this.

I can see where Amaze are coming from, because in the first part Max was shown mainly in meltdown states, an uncomfortably one-sided portrayal of the boy probably designed to garner sympathy for the family.
But he is shown in more light-hearted moments towards the end of the report, which provides something of a balance.

And while there's no attempt to see the situation from Max's point of view, I can understand the producers' difficulty in that regard, and I think the segment with the autism teacher went a little way towards showing the potential Max might have.

I guess my conclusion would be that, yes, the portrayal of severe autism is lacking in depth and understanding from the autistic person's viewpoint, and they could and should have done better, but I think the program addresses a valid need. Let's face it, the family truly was in crisis - kids should not have to live in fear of their borther, autistic or not - and there is a real lack of support for families in that kind of situation. I wouldn't want that message to get lost.



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16 Jul 2018, 8:55 pm

I'm glad it was criticized. I saw an article about it on the news and it made me really angry that people would portray autistic people like burdens and monsters. We absolutely need to give more support to families with autistic children (and autistic people themselves, children or adults), but at the same time, we can't portray them as a burden. Autistic people are human, no matter how "severe" they are.


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MrsPeel
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17 Jul 2018, 9:40 pm

After thinking about it, it occurs to me that there's another issue underlying this documentary.

There were hints in there that perhaps, with greater support at this time in his life, Max's behaviour could improve so that he would be less of a burden to society long-term.

And I'm wondering if that was an implicit dig at the NDIS (the new Australian disability insurance scheme, which provides funding for programs to improve quality of life). The NDIS has been greatly oversubscribed by autism sufferers and there've been hints that the government is trying to cut back by being more selective in who can get funding.

If the intent of the documentary was to highlight how important such funding can be, I wish they'd been more explicit and gone a bit further to show how much hope there can be for severely autistic children to live well in adulthood with the right supports.