Parents of child with severe autism say they will relinquish him unless given more support

Family desperate over severely autistic child

Alex's doctor says he is the most severely affected child she has come across in all her time as a paediatrician. (Warning: distressing video)

The eight-year-old's room is littered with shredded paper.

Inside the small space, on a single mattress on the floor, sits Alex, watching a video on his tablet. He tears and scatters anything from three to 50 magazines and papers a day. He screams or emits noises to indicate if he is happy or agitated. Beside him is a support worker whose aim is to keep him safe.

Usually he refuses to wear any clothes, not even a nappy. But today he is clad in track pants.

Alex, who has severe autism, plays outside with chalk. His parents are asking the NDIS for extra funding.
Alex, who has severe autism, plays outside with chalk. His parents are asking the NDIS for extra funding. Photo: Daniel Pockett

The fifth child of Martina and Rod McNeill, and the second youngest, Alex was diagnosed with autistic disorder and developmental delay when he was just 32 months old.

His doctor says he is the most severely affected child she has come across in "all my time as a paediatrician". She is afraid the daily, round-the-clock, high-level care the boy requires will "end up breaking the family" – unless there is more help.

The parents have asked – and the doctor recommends – ­ the National Disability Insurance Agency increase funding to provide support carers eight hours a day as well as an extension to the family home so the child can be kept separate from the other five siblings giving everyone a much needed respite.

Otherwise, they say they will be forced to relinquish him to state care.

"I spend on average, three to four hours a day just cleaning up Alex's mess. Shredded paper, broken toys, food, urine and faeces make up the majority of it," Ms McNeill says.

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"He plays with his anus and wipes germs over every surface in the house. I also spend a couple of hours a day just doing laundry due to Alex's incontinence."

Music is constantly being piped into the room to soothe Alex.

The room itself has been modified so he can't hurt himself. There are no curtains or curtain rods on the window.

Alex's bedroom is a scene of colour and chaos.
Alex's bedroom is a scene of colour and chaos.  Photo: Daniel Pockett

Ms McNeill says in the past, Alex has smeared his faeces on the curtains, or wrapped himself in them. He has also hung on the rod to try to smash the window.

Now the window pane, like the only light fixture in the room – a bulb – is shatter proof.

The light switch is also outside the room otherwise Alex would keep turning it on and off all night.

Alex McNeill has autistic disorder. He spends his day shredding papers. Story by Neelima Choahan
Alex McNeill has autistic disorder. He spends his day shredding papers. Story by Neelima Choahan Photo: Supplied

His room, like the rest of the house, has a lock to stop him from escaping or entering his siblings' bedrooms. At night Alex is locked into his room as he often doesn't sleep all night.

Ms McNeill says before the locks were put in, Alex would go into the kitchen and break glass and walk over it.

She says trying to look after Alex is affecting her physical and mental health, her marriage and the ability to look after the other children, the youngest of whom is seven. Some of the other children, she says, also have disabilities or are on the spectrum.

Alex tore a hole in his old mattress one night and was found hiding inside the base of the bed.
Alex tore a hole in his old mattress one night and was found hiding inside the base of the bed.  Photo: Daniel Pockett

"I am no longer a mother, I am a carer," Ms McNeill says.

"I spend all of my energy and time in cleaning up after Alex and looking after his needs, and I simply don't have either time or energy left over, in order to be a mother."

Alex has also been diagnosed with severe behavioural disturbance, aggression, obsessive-compulsive disorder, and a severe sensory-processing disorder.

Alex McNeill in his room shredding papers. His parents say they need more support to take care of him at home. Story by ...
Alex McNeill in his room shredding papers. His parents say they need more support to take care of him at home. Story by Neelima Choahan. Photo: Supplied

Severe reaction to medication means he is unable to be treated for his behaviour. He also has reactions to foods and preservatives, and is likely to have PANS, paediatric auto-immune neuropsychiatric syndrome, which causes behaviour changes due to brain inflammation.

The severity of his disorders means he can't access respite care. 

Throughout the house, Ms McNeill points out the damage that Alex has inflicted: there is wall paper ripped off walls, strips of wood torn off cabinets; a small rock wall in the front of the house dismantled piece by piece.

Alex playing outside is watched by mum, Martina, far left, his support worker, and his dad, Rodney.
Alex playing outside is watched by mum, Martina, far left, his support worker, and his dad, Rodney. Photo: Daniel Pockett

"My marriage has suffered hugely as a result of Alex's disabilities," she says.

"We have discussed separating the household, so that the other children can have a relatively normal life with one parent. But neither one of us would be capable of looking after Alex, or our other children, by ourselves."

Mr McNeill says he has had to reduce his work to part-time hours so he is at hand to help with his son.

"Due to his lack of understanding for safety he requires constant 24/7 supervision," Mr McNeill says.

"Due to his love of destruction he needs to be kept separate from things and areas. Due to his anxiety of new places and his aversion to wearing clothes it means that we as a family cannot go out in public for any activities."

Ms McNeill says she has often considered taking her own life or "driving Alex off a bridge", and recently suffered a mental breakdown.

She says soon after she spoke about her desperation and fear her other children were being affected, the family was visited by child protection workers who told them that under the act the other children could be removed if they were being harmed.

A spokesman for the Department of Human Services says they cannot comment directly on individual cases for privacy reasons.

But, he says, child protection may respond to reports from members of the public, but only intervenes when children and young people are experiencing abuse or neglect or are at risk of serious harm.

A National Disability Insurance Agency spokesman said the family's plan was under review.

"We understand the concerns of the family and will continue to work closely with them," he said.

"The plan review is under consideration and the National Disability Insurance Agency will take into account the whole of family circumstances while undertaking the review."

Ms McNeill says the authorities need to stop ticking boxes and address Alex's individual needs.

"I feel let down by disability services and NDIA," she says.

"NDIA is meant to be child focused, it is meant to be about what he needs, but that's not what we have got.

"I can see there is only so much they would normally do, but stop looking at your stupid boxes [on the form] and actually look at the child."

To donate to Alex McNeill, visit the GoFundMe page.