Max was like any other playful, noisy toddler before his behaviour changed suddenly as a two-year-old.
One of the hardest things about parenting is those moments where your child gets hurt and cries out in pain; it’s a sound that seems to pierce you far deeper than your ears.
But imagine how hard it is to have a child who can’t tell you when they’ve hurt themselves, who has no way of communicating that pain, even though they feel it.
Monir Elhage’s autistic son, Max, who has just turned six, is what’s matter-of-factly called “non-verbal”, which means that, as awful as it sounds, he’d love to hear his boy cry out in pain, complain of feeling sick, or ask for a Band-Aid for his grazed knee.
“It’s the most heartbreaking, difficult thing, to think that he could have a terrible earache, or a sore throat, or he’s hurt his knee and he can’t process or communicate the pain, so you just don’t know,” Monir says.
“When he was younger, he just didn’t know how to cry and he couldn’t even point to tell you where pain was. So he could fall over when you’re not looking and not cry, so you’d find bruises on his legs at night. You have to check him up and down, every night.
“It’s hard, because if he has a temperature, he won’t tell you he feels sick, you just have to pick up on the signs.
“And you feel guilty, you feel terrible, but you have to tell yourself you’re doing your best, you can’t just kill yourself over it.”
Monir, 45, is part of an incredible and emotional new short film, DAD, which is available free online, and features Australian fathers from all walks of life — including former football star Mat Rogers and broadcaster Ian Rogerson — who have children on the autism spectrum.
In the film, Dads talk about how they found out their children were affected, and how they reacted, which is generally very differently to the way their wives did.
“It’s the most heartbreaking, difficult thing … he can’t process or communicate the pain.”
For Monir, a pharmacist, and his son, Max, autism shoved itself into their lives very suddenly, and has changed them forever.
Up until the age of two, Max was just like any other kid; noisy, fond of imitating his Dad by following him around and shouting into a pretend mobile phone, and hitting all the usual goals and milestones for a toddler.
“And then suddenly that all just stops, very suddenly, within a month or two, and there are no words, and they revert backwards, it’s the Benjamin Button effect, and you’re thinking hang on, I already taught him to do that, and now he can’t do it,” he recalls.
“Another big thing was the eye contact, which just stopped. Normally, I would come home from work and he would run to the door and and now you’d open the door and he’d be in the room but he wouldn’t even turn around.
“You could set off fireworks and he wouldn’t even turn to acknowledge them, it’s like he’s got no interest in what’s going on. His brain was just suddenly wired very differently.”
What Monir says, that comes across very clearly in the film made by Autism Awareness Australia, is that every child on the spectrum is different (as Mat Rogers puts it, “if you’ve met one child on the spectrum, you’ve met one child on the spectrum”) and a lot of other parents tell him that he’s lucky.
That’s because Max is well behaved in public and can sit in a cafe or restaurant without any casual observers suspecting there’s anything out of the ordinary about him. (Another Dad in the movie talks, chillingly, about his son screaming, non-stop, “23 or 24 hours a day, for months”.)
“When you meet other spectrum parents, you sort of trade cards with each other and I might say ‘I would trade you for speech,’ but a lot of people say to us they would trade us for behaviour,” he says.
“And we have a very good lifestyle considering Max’s situation, which a lot of parents don’t, and he can use picture books and an app on the phone to pick what he wants by pointing — it’s not Stephen Hawking’s computer, but it’s similar.
“He can do that now, but that’s the result of upwards of 100 hours of therapy a month, for the past four years, and I’m lucky, because I have the resources for that, but what about the families who don’t?
“And it can be very tough, some kids can’t handle noise, for example, so even with the help of therapy, something as simple as getting a haircut can take a year of training, so they can get him used to the buzzing noise near his ear.
“For Max, it turned out that he only liked his hair being cut by a man, not a woman, and yet he prefers female therapists. And you just don’t know these things because he’s non-verbal.”
After they’ve been given the diagnosis, parents behave in different ways, but some level of disbelief and denial seems common.
Monir says he did a lot of research, not wanting it to be true, because, as he says, labelling someone as autistic is a very serious thing.
“Because the spectrum is so broad, you’ll have someone like Jerry Seinfeld saying he’s on the spectrum, because he’s not very adaptable,” he says. “But it’s very hard to give that label to a child because that’s with them for life — you don’t ever become un-autistic.”
Divorced from reality
The other thing that parents are told early on is that “most who have autistic children end up getting divorced”. As one father puts it in the film, looking after your child swallows up so much of your life that there’s no time left to work on, or maintain, your relationship.
Monir says he and wife Lee had very different concerns when Max was diagnosed — he worried about who was going to take over his businesses if his son couldn’t, she worried about whether he’d ever be able to get married.
“It’s true most people get divorced because it’s very hard for parents to be on the same page, relationships are hard enough, but this adds pressures that are financial, and emotional, and there’s no time for each other,” Monir says.
“But I just want other Dads to understand that you have to just navigate all these issues like everyone else does. It’s got nothing to do with the spectrum, we’re all navigating those same variables in life, and divorce doesn’t have to be an option.”
Because his wife is far more organised than him, Monir says they quickly made a
decision that she would set up and run Max’s treatment programs, while he would go to work to pay for them.
“It’s expensive, we sat with neurosurgeons charging $300 an hour, just to give you their opinion,” he said.
The pay-off is in the little wins, which Monir says come all the time.
“We’ve made leaps and bounds, and honestly it’s like getting a a new child every year, because he’s not 2013 Max now, or 2014 Max, and you’re always looking at what you’ve achieved every year,” he explains.
“The great thing about goal setting is getting to them. I would advise fathers, particularly, that you need to set your goals, even if that’s just wanting to go for a coffee with your son, or going to a cafe for Father’s Day.
“We did that this year, and no one else would know what a big goal, just something like that, was for us.”
Looking to the future
The biggest worry for parents like Monir, of course, is what’s going to happen — who’s going to be there — when they’re gone.
One terrifying statistic that haunts him is that 80 per cent of autistic adults are unemployable, often because of things like social phobias, light sensitivity or problems with noise.
“He’s not struggling now, because he’s under my roof, everything is done for him, so right now it’s not an issue. But it will be an issue for him later. It’s adulthood we’re preparing him for.”
And that’s why what Monir wants more than anything, what he’d give anything for, is for Max to be able to speak.
“If anyone can get him just to say the word ‘Mum’, I’ll fly them to Hamilton Island and pay for their holiday, that’s the offer I’ve made to people,” he says.
“It’s the goal of our therapists, and it’s not because it’s important for him to talk to me, it’s because he’s going to need that skill later on. He’s got enough disadvantages as it is. Frankly I’d take a swear word. Maybe he’ll shout out one of my passwords one day.”
It’s difficult to ask, but I wonder whether Max’s condition put Monir and his wife off having any more children, yet he sounds thrilled to tell me that they’re expecting twins in March.
“I’ve been to a lot of workshops where parents have more than one child with autism, and it’s without a doubt that autism is hereditary, that your genes have contributed, but the odds that your second child will have it is one in six,” he says.
“And you have to remember that to me, Max is not autistic — Max is just Max. He’s my son, he’s just my son, and I’m just having to do different things to other parents, that’s all.”
The final word
So does Monir have any advice for other Dads, either those who are coping with a child on the spectrum, or those who have no idea what it’s like?
“I would just ask people to watch the film, because it will really help to raise understanding, and other than that I’d just ask people not to make assumptions, to show some compassion, and not just to spectrum kids and their parents, but to everyone,” he enthuses.
“We’ve got a lot of mental-health issues in Australia and I think we need to show compassion to everyone. Remember that your mates will go through tough times, and you need to be there for them, but first and foremost, focus on your family.”
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