It was a big win for New Zealand dad Andrew Ryan when he saw his son lick a jet plane lolly for the first time.
The success was during one of his many attempts to encourage Mitchell to play with food. It was the only time he has seen his six-year-old son bring food to his mouth.
The next day, Mitchell would not touch food again.
The six-year-old is autistic, non-verbal and has a rare condition called Avoidant Restrictive Food Intake Disorder (Arfid). He drinks Pediasure, a nutritional supplement for children, but does not consume any other food or drinks, including water.
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"I could try and give him a chocolate sundae, which any kid would love, and he won't want to go near it. … I would give him any food in the world to eat, I wouldn't care what it was," Ryan said. As well as not eating, Mitchell will scream and run away from food.
The family, who live in Greater Wellington region, have tried everything, Ryan said. Arfid was only recognised as a disorder in 2013 and finding help in New Zealand has been "horrendously challenging".
Andrew and wife Isobel took out their Kiwisavers and moved to Wellington when Mitchell was diagnosed with autism four years ago. They lived with family while they paid for $60,000 worth of therapy for Mitchell.
The therapies did not help the young boy to eat. The couple have now taken out a mortgage and moved to a lifestyle block in Masterton, in the hope that there will be enough space to build Mitchell his own house nearby when he becomes an adult.
At first they tried force-feeding him, which was "horrible" and "like torturing him", Ryan said. Then, running out of ideas, they tried not feeding him until he wanted to eat. Mitchell would still not eat.
"I realised he would just starve. It wouldn't matter how hungry he is, he won't do it. You can see that he almost wants to but there's something that prevents him from doing it."
With guidance from doctors, the parents realised this was the "wrong way to go" and could make food more traumatic for Mitchell.
They have since tried to make food more play-based and fun for Mitchell, leading to their success in seeing him lick a jet plane lolly which he thought was a toy.
Visits to doctors can be frustrating. Ryan recalls a doctor saying: "Oh, my kid's a fussy eater too."
He thought: "Are you kidding? We can't get this kid to eat anything and he's six. He's eaten nothing in his life, apart from yoghurt when he was a baby … even then he would hate it and throw it up."
Their biggest fear is regression. Sometimes Mitchell's development seems to go backwards – when he was four he spoke for the first time, but the next day was back to not speaking. Likewise, the day after playing with the jet plane lollies he would not touch them.
Regression could happen with drinking Pediasure too. The risk is that if he developed an aversion and stopped drinking it, he would need to be fed through a tube into his stomach. That could be dangerous, because with his autism he is likely to pull the tube out.
People have told them to wait and Mitchell might eventually learn to eat, but Ryan said they've waited long enough.
"I'd held off to try and see if it would happen, and I held off because I was also really concerned about Mitchell's privacy … It's really scary for me to put his photo out there and say he's autistic."
The best support for Mitchell is at a clinic in Graz, Austria called NoTube, which has courses for families with food therapies to help children learn to eat. The Ryans had a video interview with therapists, who have a 90% success rate at treating Arfid and were confident they could get Mitchell to eat.
The therapy to help Mitchell eat could also help him speak, by encouraging him to use his mouth muscles with chewing motions.
The Ryans are trying to raise $50,000 to go to NoTube for a two-week course.
"I'm trying not to get my hopes up. On paper you look at it and you go, 'This could work. This could change his life.' If there was any place ever that could do it these are the people," Ryan said.
This article was reproduced with permission from Stuff.
