“This will be strange for people to understand, but I do remember our family’s very first win,” Audrey Komrij Jones, the mother of an energetic, beautiful nine-year-old girl on the autism spectrum, said gleefully as she recounted the moment.
“My husband tends to favour saying rude words in Maltese for some reason – I’m told that they are more satisfying to say than Dutch or French ones (his mother tongues),” she continued.
“Sas was trying to get me to do something for her – I can’t remember what exactly but it probably involved asking for sushi for the fifth time that week – and when I refused, she stamped her foot, said this rather horrible Maltese word (thankfully not clearly), and stormed off.”
“I was stunned, then horrified, then worried about her saying it again – but then it hit me that it was the first time ever that she had used a word in an appropriate way at the right time, and I was so proud, as she was understanding how words work.”
“Thankfully,” she laughed, “since then, we have managed to make her think the word she is looking for is ‘fish’.”
Audrey and her husband Jetze are the proud parents of Saskia, a little girl who loves swimming, technology and food – the fishier the better. Having shown signs she was on the spectrum from a young age, Audrey and Jetze had to quickly become acquainted with what autism was, and the challenges, communication obstacles and successes that come with it.
And via social media, Audrey has been able to share the real-life experience of raising a child on the spectrum, without needing to sugar coat it.
“She’s known as Sassy or Sas, but has also been referred to as Skanksa, Seksia and Sasha by various people – but she’s still luckier than her dad, who is known by most as Jetski.”
Audrey had a lot to say when asked to describe her daughter.
“Sas is a loving, sweet child, with difficulties,” Audrey said. “Now that she can communicate a little, I’m getting to see a part of her character that I didn’t know existed. She’s actually funny and has the attitude of a teenager already! I guess she really is Sassy.”
“Whenever I suggest doing something she doesn’t like, or remind her that it’s bedtime, she rolls her eyes and says: ‘we don’t say that’. She’s a very intelligent child (not in the academic sense), and she knows what she wants and will do everything to get it. She’s socially awkward, with no sense of shame – a trait that exasperates me, yet is also something I am so jealous of at times.”
“She does what she wants, when she wants to, and doesn’t realise people are staring, and that must feel amazing. – and surprisingly, despite the belief that most autistic individuals need to stick to one language, she absolutely loves learning Maltese vocabulary.”
When Sas begins to get really excited, she can become over-stimulated, and begin “stimming”.
“She literally squeals with joy when I show up with a surprise and runs to hug me. Sometimes she gets over-stimulated, and she stims. Her stim is pretty full-on. In her case, she flaps her hands hard like a bird that is about to fly away. Many people think this is strange and glare at her when she does it. We are OK with curiosity, but glares upset me.”
And if Sas begins to feel unhappy, she’ll let everyone in the vicinity know.
“She usually screams, then proceeds to bite herself if she doesn’t get her way or if she cannot express what she wants,” Audrey said. “Thankfully, the biting has really decreased and her arms are no longer blue. It’s worse when she’s unwell and cannot tell us she is in pain. Imagine being in pain and not being able to get help. Quite scary isn’t it?”
One thing that can set Sas off is waiting – “she just doesn’t understand why that’s necessary or why we cannot do something immediately once it’s been promised”.
And this can lead to potential problems with the public. Though Malta has a prevalence of around 1 in 68 children being on the spectrum, understanding and education about autism on the island remains poor, often leading to uncomfortable and painful public moments that can affect families.
“We recently took Sas to a pool,” Audrey recounted, “and for some reason we were targeted by this woman who insisted on staying right next to us, despite the fact that the pool was completely empty, then proceeded to scream when Sas accidentally touched her leg and shouted ‘this disgusting stranger touched me’. That ‘she’s making me too uncomfortable, you should stay at home’, and that we are selfish parents because ‘we shouldn’t take her out in public and in my country we leave children like her at home’.”
“I just couldn’t believe I was hearing those words, and this wasn’t the worst experience we’ve had.”
“That was when this woman actually hit Sas for hitting her table by mistake,” Audrey said. “Another was when these two young women were filming Sas, imitating her as she stimmed and calling her a retard.”
“Yet another was when I was told by a woman who claims she organises things for disabled kids that I should only take her out with other disabled kids because kids like Sas annoy ‘normal’ people… Sometimes I just want to give up, but I won’t. It’s this kind of ignorance that needs to be kept away from the public and not kids like Sas.”
“The problem with a bad reaction is that you tend to hold on to that memory for far longer than when people are kind,” Audrey said. “We’ve had awful people staring at us in disgust if she stims, and we’ve had people smiling at us and giving us a reassuring look. We’ve had people say: ‘how can she be disabled? she’s so pretty! she looks ‘normal’. That one is a killer…”
“Seeing people use words like ‘retard’ or ‘autistic’ as insults really hurts.”
“The medical term for my daughter’s condition is mental retardation,” Audrey explained. “I guess they don’t realise that by calling people retarded they are calling them a pretty, clever little girl who can play the piano better than they ever will.”
“I used to call them out on it, but the truth is you’ll just get an ‘OK boomer’, as some people are too cool to change. The truth is my fight is much bigger than political correctness.”
Not only do people not understand what autism looks like, but some will also come up with fictitious ideas they may have picked up from TV and films.
“The two most obvious ones are the fact that people assume she’s a maths genius, because they’ve watched Rain Man, when we have barely mastered addition, and the fact that people assume that all autistic individuals are the same,” Audrey explained. “They always know someone who works, is married, is living alone etc when currently, the facts are that they are not likely options for my daughter. I remind myself that they mean well and they are trying to give me hope, and that’s OK.”
This is something that weighs heavily on parents’ minds – what will happen to the children after we’re gone?
“This is a thought that keeps me up at night,” Audrey said. “The future terrifies me. I’m so scared about what will happen to her when we are gone, and no longer around to keep her safe. I’m scared of people preying on her and taking advantage, I’m scared she will be left in a dangerous situation, with no one to care for her. I am hoping that by then, society will have evolved.”
Audrey, and other parents in Malta, have been pushing authorities to create better support systems for these Maltese youths.
“So far, I’ve been ignored, but the government needs to realise that I’m not going to go away. I was recently told by someone on Facebook that ‘we know your daughter has autism, you’ve been doing that show for a few years now, shut up we’re bored’. But I won’t stop, not until I have achieved what we want to.”
“But on better days, I have these dreams of her being this wonderful musician. The school Principal believes her future is in singing and that would be wonderful. The truth is that I just want her to be happy, loved, and safe. I’ll take that above anything else.”
However, there are rays of hope, sometimes from the most unexpected places.<
“The most incredible experience we ever had was in Friesland, where my husband is originally from,” Audrey said. “Sas was having a bad day, and screamed throughout. We decided to take her for some food as it normally calms her down and when we entered the restaurant my heart sank as she was still upset and it was pretty full. Sure enough, she couldn’t bear to wait for her food and the screaming started again.”
“I braced myself for the stares, but when I finally looked up, I realised that no one, absolutely no one even turned to look at us, not even young children who are normally curious and can’t really understand how we let her get away with this behaviour when they aren’t. It was like they knew and accepted it immediately.”
“People have been amazing locally too, and she’s become a regular at a few places where she is treated like an absolute queen. And these are the memories that I need to give space to in my mind.”
Having had a completely incorrect idea of what autism was when she was younger herself, Audrey knows what it’s like to be callous and uncaring towards people who are different.
“I’m open about the fact that I’m a bit of a hypocrite, as I expect people who are not affected by autism to be kind, when I wasn’t,” she said truthfully. “The truth is that when we were children, the knowledge wasn’t there, and dismissing people as weird, odd or stupid was nearly encouraged. When I was a bit older and I came across an individual who I know now is an undiagnosed autistic person, I was horrified whenever he said anything inappropriate and glared in shock when he stimmed. I was too ‘cool’ (or so I thought), to be his friend.”
“The difference is that now, I know better, we know better, the children at her school know and do better and the information is everywhere, so there really is no excuse.”
“I do feel pure shame when I look back at how dismissive I was. I changed when I had to, and the struggle to break down the stigma and misinformation created by my generation and the one before it has been tough, but thankfully, results have been great, and I really hope I’ve somehow made up for my wrongs.”
Throughout the challenges, Audrey and her husband keep love and care at the centre of their relationship with their daughter, determined to not keep her hidden away as some people have urged her to do, and give her the best possible chance at life she can get.
“Though the lows in autism are awful, when a milestone is reached or a new skill is learned, because of the sheer hard work that goes into it, it’s like winning the lottery every time. To me, every time she comes up with a new phrase is a win. A day without a tantrum is a win. A day in which she doesn’t bite herself is a win, so you could say that we win regularly as a family.”
With her personal experience, Audrey wanted to send a message to any parents raising a child on the autism spectrum.
“The first step is to talk to each other and to make sure that you are working as a team. That is the most important thing as you cannot have two people working against each other on this journey,” she said. “Of course, there are amazing single parents doing this on their own – they are incredible.”
“Now this is where you’ll realise how inadequate the system in Malta is. You are either going to have the money to take up private therapy, or to rely on scarce government services. The truth is that many people cannot go private, and in that case the best thing to do is to register with CDAU, and for speech therapy services, though the latter will be granted once or twice a month at most.”
“There is also a waiting list for Inspire, get onto that one as soon as you can. If you have the choice (and please don’t call it a luxury, it isn’t, as I worked two jobs for years to be able to afford it), look into private institutions like hand in hand, and any other therapies your psychologist feels would benefit your child,” she continued.
However, Audrey wanted to prepare parents for the changes they were about to see in their lives.
“Your friends in a few years’ time may not be the same ones you had at the start, some may be supportive, some may abandon you, or you may abandon them, because the truth is your life will be different to theirs now. If old friends choose to just unfriend you because they think you’re tiring, let it go, you don’t have time for that anyway,” she said.
“Don’t think why me. It isn’t you who has been thrown into a life of difficulties, but your child, you’re just the supporting act. Advocate, teach, speak out. You are your child’s voice so never be afraid to use it.”
“Love them, love them like there is no tomorrow, and like they are perfect, because they are. There isn’t another child hiding behind the autism and your child is who they are meant to be.”
“Believe in them, even when everyone else dismisses the possibility of your child achieving something. Your mantra needs to be that even if they can’t right now, one day, they will. Hope is all you have.”
“Don’t let people guilt you into believing that this was because of something you did or didn’t do. The ones who pass these comments aren’t geneticists or researchers.”
“Don’t give up, don’t stay at home, try things at least once, and cut your losses immediately if it doesn’t work. Take them out to family-friendly places which tend to be full of other families, not couples on romantic dates. If they choose to go to a pizzeria for a romantic dinner, then they made the wrong choice, not you,”
“And take care of yourself, it’s important. Don’t lose yourself and your identity. You aren’t just the parent of an autistic child, remember who you are and try to keep the relationships that matter to you alive.”
“Most importantly, remember to laugh. Poking fun at myself, and at times my wonderful husband (who loves it deep, deep down) is what gets me through most days. The day we stop laughing is the day we have given up.”