Warning: This story contains details that some readers may find disturbing.

A friend of the family found dead in an apparent murder-suicide in their Perth home said it was difficult for people not affected by the severe disorder to understand what it was like.

The entire family – brothers Otis, 14, Leon, 16, and parents Jarrod Clune, 50, and Maiwena Goasdoo, 49 – were found dead in their Mosman Park home last month.

Police believe the parents killed their sons before taking their own lives.

Police said the boys were experiencing “significant health issues” and friends said they were severely autistic.

Simon Lewis knew the family well, having met them at the early intervention center he attended with his sons and where he and his wife adopted their daughter Madeline, now 16, who has severe autism.

Lewis said she wasn’t trying to justify her parents’ actions, but “I can definitely empathize with what they were going through.”

“Obviously it’s a terrible tragedy,” he told ABC Radio Perth in an emotional interview detailing his family’s experience.

Otis and Leon “were wonderful kids, just like Madeline,” he said.

“You can hear me getting a little emotional, but I’m still in big shock.”

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confront and isolate

Mr Lewis described the “harrowing” and “heartbreaking” experience endured by the family of Madeleine, who has level 3 autism.

Lewis emphasized his deep love for his daughter and said he and his wife had been pushed to their limits by some of the behaviors that were beyond his control.

Madeleine is non-verbal, unable to clearly express her needs and feelings, and requires 24-hour care to prevent her from harming herself or others.

Lewis said that as a baby and young child, she would often cry for hours and wake up between 1 a.m. and 6 a.m., meaning he and his wife often went to work with less than two hours of sleep.

“It’s scary, conflicting and isolating. It pushes you into places you never imagined,” he said.

Lewis said medical staff diagnosed her developmental delay just before her second birthday and were told it would be two-and-a-half years before an official diagnosis was made.

“Not having a diagnosis means not having access to services,” Lewis said, recalling how she went home and broke down crying in her backyard, not knowing what to do.

Looking back at Clunes

Lewis said she woke up sweating from the stress and anxiety of her family’s situation and felt her parents had no help.

“The pressure on families like mine is through the roof and there are no counseling services to even call,” he said.

“We’re just trying minute by minute to maintain the situation.

“I think a lot about the Clunes family, because their eldest son was probably six months older.”

He said it was “heartbreaking” to see his daughter suffer and not be able to understand what was troubling her.

Occasionally this manifested in sudden violence towards the mother, and other times it would make the mother grimace in obvious distress that the parents found nearly impossible to diagnose.

At one point, he said, she was clutching her stomach and grimacing, so he gave her a warm bag of wheat to soothe her, but she immediately tore the bag to shreds and began eating the raw wheat inside.

“It’s very intense and children are often frightened and frustrated,” he says.

Autism metaphors are controversial

Mr Lewis described Madeleine’s condition as “incredibly cruel” and said he was tired of autism being interpreted as being psychic.

“Autism has been taken over by some kind of eccentricity,” he says.

”[But] Autism, seen through my lens, is not a superpower. ”

Mr Lewis said Madeleine had moments of extreme tenderness and joy.

“My favorite moment with her was when we swam in the ocean… she would scream with joy,” he said.

“She is a very, very loving person.

NDIS stress

Mr Lewis said the stress brought him to the brink of divorce from his wife, but their relationship was only saved when a GP friend offered him psychological help.

He said he and his wife were trying to keep their family together, but it was also difficult for their two older daughters.

“It’s completely high octane, high pressure,” he said.

Mr Lewis said another source of pressure was the constant fear that Madeleine’s NDIS funding, which allows her family to hire a carer and provide her with emotional support, would be cut.

He described the National Disability Insurance Scheme as a “wonderful initiative” and said he and his wife were forced to recount “harrowing” details of their daily lives every year to keep their daughter’s plan funded, and said he knew of families whose funding was abruptly cut off.

“Then [the funding] “If it gets taken away or reduced, I don’t know where it will go,” he said.

Lewis said he spoke out about his daughter because families like his are often hidden behind their own doors, invisible to society and unable to participate in community life.