I have one child that is on the spectrum, Liam who is aged 9 years old. He has adult stepsisters and one stepbrother. Liam is full of energy and stamina and he is very excitable. His interests include: Batman, Lego and cartoons. He’s not very outdoorsy, if you asked him to go out, he generally answers ‘no’. But if you actually take him anywhere he has the time of his life, whether it’s swimming or the cinema or any activity, especially anything that stimulates him. His favourite thing is to go to the park and play on the swing, but he’s not a fan of taking his bike. He can ride a bike but only with the training wheels, and he doesn’t quite get the combination of the pedalling and the steering. Liam’s special interest is drawing, he draws for probably three hours every day. He draws and draws and draws. If we’re out somewhere and somebody’s forgotten his pad and his pencils, then, it’s chaos.
A typical day with Liam is that we will wake him up as he doesn’t sleep. He moves a lot in his sleep, so when we do wake him up he’s very tired, like a zombie. We’ll hold his hand, lead him to the shower and turn it on. He now can shampoo and wash himself, but then he’ll come out and you’re literally handing him the toothbrush. He calls us his butlers. During the school morning, we assist him to get organised, helping him to put his shoes on, otherwise, we’ll not get out the door. He’s doing more for himself, a hell of a lot more than he was two years ago, but he’s still greatly assisted.
Probably 80% of the time my mother-in-law picks Liam up from school, and he’ll spend a couple of hours at her house, until my wife or I have finished work. Sometimes he says he’s bored, but as long as he’s got his colouring-in and his pens, pencils and everything he is OK. My mother-in-law’s Greek and she just pretty much force-feeds him for the couple of hours that he’s there with her, following him around the house when he’s moving, putting food in his mouth!
First noticing developmental delays
I hadn’t had children previously that young, so I wasn’t quite as onto it as my wife in noticing that something was a bit different with Liam. She’d had children before and she would say to me, ‘there’s something not right, I can’t put my finger on it’. She’d say, ‘oh, you know, Claire was walking at this time, or Peter was sitting up’. They all had different measurements, and he was well behind.
From when he could stand, we used to actually call him Arrogant Baby, because he could be with my mother-in-law for a day, and she’d be waving good-bye to him, and making a fuss,
like grandmothers do, and he’d sit there like absolutely vacant, emotionless, he wouldn’t make eye contact with her. We thought that he was just aloof. Then I read something in a National Geographic magazine, and it was about autism. It showed pictures of twin American boys, who were both autistic. One twin was staring really intently, the page was close to his face, and the other one was flapping in front of the TV, and I was like, ‘that’s what Liam does!’. Even as a two-year-old he would jump and flap and stim.
We put him kindergarten at age of two-and-a-half, and after six months, he had a teacher named Miss Charlotte. At the parent how’s-your-kid-going sort of chat one evening, she brought up the ‘A’ word, Autism. She asked if we had ever heard of it and if we knew much about it. It turned out, she had a niece that was on the spectrum, and she said that she saw a lot of similar traits in Liam.
We responded to her that we had considered it; we’d seen the National Geographic magazine, we’d watched some stuff on telly, and we were like, ‘yes, you know, he is like that’. I’m not saying you hope that he hasn’t got it; it’s split: you don’t want him to have the disadvantages that it brings, but at the same time, having an answer for why he’s like he is, is very valuable. At least you can start giving him what he needs, the right stuff, when you know what it is that they’ve got.
Getting a diagnosis
We then booked Liam in to see the paediatrician. It took a frustratingly long time, and the school wanted to know if there was going to be a diagnosis. We saw one paediatrician, then we were handed over to another one, but she wouldn’t actually diagnose Liam on her own. She wasn’t confident enough; she wanted a panel consultation, so she sent us off to a diagnostic centre. So, we went there, and we had a very disappointing outcome, to be honest.
We saw a doctor who came up from Adelaide, about once a month. He sat with a speech therapist that we’d previously seen who had indicated from her own experiences, that we were on the right track with autism. But the doctor sat there with his clipboard and ticked. He didn’t interact with Liam at all. He left him in a corner. Liam was maybe three-and-a-half years old now, getting close to four. Liam was playing with some blocks in the corner, and he wasn’t actually really playing; he was just sat there. The doctor just observed him, and he asked us about what the behaviour was that had caught our attention. He recommended about six months of speech therapy and advised that Liam would be fine and should catch up. But he provided us with no explanation for his: stimming, repetition and flapping. He then wished us a good day.
We went out in the foyer, and were followed by the speech therapist, who actually came out and said, ‘yes, I can’t believe that either’. She gave us a name on a piece of paper, of another paediatrician, because what happened in there was wrong. Then we endeavoured to get in touch with the paediatrician, he was fully booked, and he wasn’t taking any more people in. We were put in touch with yet another paediatrician, and she was absolutely fantastic from the word go.
Our second paediatrician in the meantime, copied us into a very tersely worded email to the diagnostic centre. She felt like we’ve just lost the best part of the year in him being able to access therapies. We were sent back there again, where Liam had to do IQ tests, but he was so fidgety, and they abandoned the tests after 20 minutes. He saw it as a game and he had the intelligence there to take the mickey out of them. They could see that, and they said he was just messing around.
He was diagnosed with a little bit of ADHD then but was in need of speech therapy because he had a developmental delay. We privately got a speech therapist based on that recommendation. We used to go to her house every Saturday morning, but she was having a baby, so she had to stop seeing Liam. She referred us to another speech therapist. We had started this all on our own back. I hadn’t actually connected with Autism NT at this stage.
The speech therapist advised us that we could get some funding and the next thing, we had a lady from Autism SA come around to our house after work one day. Liam was doing his usual jumping up and down. As soon as he gets in from school he just strips everything off, he just lives around the house in his undies. Liam was flapping and jumping and squealing and excitable in front of the TV, and she came in and she asked how there can be any doubt of an autism diagnosis.
We weren’t getting a diagnosis of autism, but his therapist and teachers were seeing it. We literally didn’t get a diagnosis until about two months before his sixth birthday. The school were doing what they could, but they weren’t specialised. We were very fortunate that they had a teacher, when Liam was in transition that was an ex-occupational therapist. She had visual aids and social stories.
The following year the teacher wasn’t so good. She upset my wife by saying ‘I don’t know why you bring him here; he’d really be better off at a special needs school’. That was the last thing she needed to hear. My wife left there in tears. I met up with her and, reasoned that this is just one person’s opinion, we’ve seen that not everybody’s like that, and you’re going to run into a bad one occasionally. In the meantime, our latest paediatrician said that we had a
diagnosis. We were then able to continue for a couple of years with the speech therapist. We attended TalkAbility, which used up a big chunk of our available funding.
Undertaking the TalkAbility program was really worth it. I could see it wouldn’t work for everyone, but the speech therapist was pretty selective on who was eligible. It wasn’t something for non-verbal clients; they had to be at a certain developmental level for it to be a benefit. We met many adults that we’re still in contact with through TalkAbility, because you’re with the same people every week for a long period of time. TalkAbility is a Canadian programme that teaches the parent on how to best communicate with their child to get positive outcomes. It’s basically training to bring your child up to the next level of sociability. The evenings where we were meant to be exchanging information, generally descended into parents just swapping stories and creating a support system.
We didn’t have much of a support system outside TalkAbility. If you tried to talk to relatives or friends about autism, they had no idea. The amount of people that just thought, ‘oh, yes, I’ve seen Rain Man, I know all about that’. My mother-in-law was totally in denial. My wife just stopped telling her everything, because she was wasting her breath. Now my mother-in-law can recognise it a lot more, but Liam is now nine years old, when he was four, five, six, she absolutely did not see it.
My mum was very good, but a little bit out of date, because she used to teach special-needs children many years ago. It’s quite heartbreaking that she wasn’t able to impart more of her knowledge because she was going downhill fast with dementia. We lost all that mine of knowledge. She was from the 70’s era where they would literally in England, have the blind kid, the muscular dystrophy kid, the albino child, the Down syndrome child, the autistic child, and the child with spina bifida all be lumped into one classroom. She had one assistant; but she had a class of about ten students.
My wife and I had a feeling of isolation. The first people you talk to are your friends or relatives, and if they haven’t got an awareness and you’re having to explain every little step of the way, or, more importantly, make excuses and give the reasons for how and why your child is acting like they are (that they’re not just a spoiled brat playing up in a shopping centre or won’t keep still or is climbing all over grandmother’s furniture), it’s hard.
The effect of Liam’s diagnosis has been that Liam’s youngest sibling definitely felt like she wasn’t getting the attention that she was used to, because she was the baby of the family until she was 10 years old.
I remember one instance we saw his siblings through the window, they weren’t teasing him, but they were mimicking him. They were jumping and running back and forth. We gave them a real bawl outside where Liam couldn’t hear, and absolutely read the riot act on: he’s your little brother and that he counts on you. The last thing Liam needs is his siblings mocking him. After that they were very upset, but they never did it again. I think they realised the magnitude of what they’d done. They’ve all been good, very caring and are protective of him.
The biggest issue with his siblings now is that Liam absolutely idolises his big brother; who is 21 years old, and Liam is nine. He pesters his brother and will not leave him alone. When his brother comes home from work and just wants to be left alone in his room or talk to his friend on the phone, Liam is there saying ‘look at this, look at this, look at this!’. His mother and I always stop and give him our full attention, maybe we shouldn’t, but we see that the siblings stay away or say to him that they have had enough, and they’ll cut him off. He doesn’t get upset, but he’ll have an angry five minutes because he just cannot fathom why his siblings no longer want to talk to him. He just doesn’t get that he has been repeating himself and talking to someone that’s already tired for too long. He has a lack of social awareness.
How life has changed
My wife and I have often joked – I don’t read too much into star signs, but we’re both Aries. An Aries person’s bad trait is that they are impatient, and they don’t suffer fools at all. I’m not a religious man either, but I think that someone was looking down on us and saying, ‘you need to learn to be more patient’. Liam has been that tonic that has made us change and be like that.
He has changed us by the fact that we just put him first in everything we do. We realise that he’s going to lead us through our whole life. I know we don’t hand our children over at 18, but they become adults, and I hope he can be as independent as he can. We’ve both set up arrangements to ensure that he’s got full ongoing support till the end. That’s the worry that I think enters many a parent’s mind, with any child with a special need, what happens when I’m gone? And you do; I think about that every day, every single day. And, yes, that’s kind of sobering, and it’s very hard with that mindset to not wallow in it but you haven’t got time to be depressed. You have got to just keep going for the child.
Our dream is that Liam is happy and that he lives as independently as he can. I hope he has lots of friends. He doesn’t need a lot, just some that he can rely on or communicate with. He even says to me now, ‘why do we have to live here? I want to live closer to my friends’.
Liam thinks he has friends at school. That’s the difference, he probably did have friends, but he struggles socially. The kids in his class are very good, caring and mothering towards him. But I see him waiting outside the classroom for the teacher to arrive. He’s always on his own just sitting there in his own thoughts, and everyone else is doing what children do: playing catch, playing tag, messing around, talking to each other or telling each other what they watched on telly last night. Liam is always on the fringes. I can see he’s watching and he’s wanting to join in, but he doesn’t quite get how.
The teacher says he has absolutely no fear of standing up in front of the class and telling them how it is or how it should be, so there’s not a shyness or fear on his behalf. She said that they were doing a science experiment, something like mouldy bread in a bag experiment, and she said to the class, ‘what do you think will happen, or how did you feel after the results? Were the results what you were expecting?’, and Liam apparently stood up and said to her, ‘I thought we were going to at least clone a new creature or make a new human being. This is science, isn’t it? This is just boring stuff!’. He has an interest in science. I think he’s a cross between having a bat-cave and having a laboratory. He loves dressing up, in year one we had to get him for Christmas, a lab coat, goggles and all this stuff.
Awareness of his diagnosis
Liam is aware of his diagnosis. I’ve explained it to him, but he generally doesn’t want to talk about it. It’s very hard to explain to him, and I kept it as positive as I could, because you do not want to destroy how a child feels about himself, especially at a young age. I was trying to explain: you’re actually special, you’re better as you see things that I never see, and you’ve got these powers. You put everything in a positive light, but I want him to understand that people don’t always understand you. I’m sort of referring to Theory of Mind, and for him to not presume that people know and understand if they haven’t seen it, not to get angry when they haven’t seen it or if they don’t understand what he is trying to say.
I think his frustrations are what destroys his social relationships, more than anything else, because he has no patience. If you don’t get it the first time, he says it’s ‘ah, ah, ah!’ It’s like, ‘how would I know? I’ve never seen this cartoon; I don’t know that character, you know, it’s not my fault. I’ve not seen it before and you’ve got to explain it’. This probably happens three times a week.
Therapies and interventions
I worked with a lady who had autistic twin boys who are now in their 20s, one was severe. Her boys are now in their 20s, one works for the NT Government, and the other boy has never progressed from a toddler. She told me that back when her boys were needing a diagnosis, there was nothing up here at all. The Variety Club paid for her, her husband and the boys to go down to Melbourne, to the Royal Children’s Hospital where she met Dr Rick Jarman. He stayed in their lives all the way through their journey including over the phone. She walked into his office and he spent some time with them and he outlined what he could do for one of the children. He continued to say that ‘unfortunately’, she cries when she tells me, he says in relation to the other son ‘I’m sorry this son will be like a baby forever’.
We had a school, we had a diagnosis, we had speech therapy, we had Occupational Therapy (OT), but we didn’t actually have any tailor-made plan. There were no neuropsychologists up here. My work friend recommended that we see Dr Jarman. I found him online and booked an appointment. I think there was about a six-month waiting list, but his receptionist rang me after four months and said that there was a gap and I put us on the next flight to Melbourne. We were there from the Monday to the Friday and he was fantastic. He dropped everything for us; he pencilled us in every single day (bar the Wednesday which we spent at the zoo). He explained that you need your plan, because how do you know if Liam needed that amount of speech therapy or that amount of OT etc.
They did some brain mapping and neuropsych tests. A Neuropsychologist came in and spent probably the longest four hours of Liam’s life with him. When we left, Dr Jarman had basically written us, a tailor-made guide for Liam for us to take back to the school. What annoyed me – is yes, the NT is limited, but we were doing the first piece of the puzzle last. If we’d gotten that plan that first, we would have been able to concentrate on all the areas that were needed the most, but no one said that, and they don’t advertise that up here because they haven’t got it to offer. It was only me seeking it out because I want the best. Many other people might just accept what they’re told, and other people might not have the time, or they might not be financially able to do that. This was certainly not covered on a grant, it cost $5,000 including flights and accommodation just to get what we needed, in the first place. But that’s what you do.
It was worth it because now he’s thriving in ways that he definitely wouldn’t have been. I just wish that people were steered in the areas that they should be, rather than just steered to what we’ve got, because what we’ve got isn’t necessarily the best things that people need. It’s not always that one size fits all, the spectrum’s huge. They’re different in so many other ways, none of them are the same. They share a common kind of area, but it’s certainly not one-size-fits-all.
Current levels of functioning
Liam’s current level of functioning is that he’s behind, but he’s happy. The meltdowns, instead of being three a day, are now probably two a week, and that’s marvellous. It’s kind of like he’s growing into being able to regulate. That’s the biggest thing. We have learnt not to hit the panic button. TalkAbility taught us some tactics, ways you should word things and how to best communicate with your child including not barking instructions from the kitchen when you’re not looking at them. Instead, you go up and say, ‘right, now we’re going to…’. We have got visual aids and timers, so we can say, ‘next time we come in, in 15 minutes time, it’s time for a shower or bed’. If you just walk in and go, ‘okay, bed’ – whoa! End of the world! But it’s all about pre-empting and keeping a calm and happy house.
We have set up structures for him. It was always heavily suggested to us to do lots of social stories for him, but it didn’t seem to have as much success for us. Actually, physically doing it alongside him was the best way for him to learn: pointing to pictures in books and being very hands-on.
He absolutely adores movement, and it doesn’t matter if he’s floating on a raft on a lake or being pushed in a swing, he gets such joy. He gets the most out of life, just through sometimes the simplest things. I’ve never, ever heard this child (and I have three others), say he’s bored, because he’s always got something going on. He doesn’t stop. He’s like a zombie in the morning, but within five minutes he’s running at 80 kilometres an hour, up and down, up and down, and he will still be going at ten o’clock at night.
He doesn’t sit to eat his dinner. There’s no point, he’s happier walking around the room, and he’ll pass his plate and stick his fork in something and put it in his mouth and carry on walking around the room. We’ve instilled something called restaurant manners, when we go to other people’s houses, so he doesn’t do it then, but we try to meet him halfway. We’re not trying to make him be a little robot because he’s already recognising that he’s struggling so much, just to cope with everything that’s going on, so his tolerance is already half-spent.
Things I like about Liam
My happiest memory of Liam is we took him to LEGOLAND in Windsor. I don’t think I’ve ever seen a child as happy, you could not wipe that smile off his face from the moment he realised where we were going.
What I Iike the most about Liam, is his happiness. He’s just always happy. He has his bad moments, but he will soon resume his happiness. He gets so much joy out of the simple things in life. I’ve never heard a kid laugh so much in a day and you’d think the way he carries on he’s just heard the funniest thing ever in his life, but this happens every day. The way he
squeals, you would think he’s going to have a seizure sometimes by the way he’s holding his chest because he’s laughing so much.
He’s brought untold joy into our lives. And I’m not saying I’d want another one, because I think one is so much. I’m not even saying he takes up so much of our time, but you want to give your all, and it would be so much harder to give your all if you had more than one. I had some friends years ago who had an autistic daughter before I knew what autism really was, other than Rain Man. They originally were going to be a three-children family, but they had a daughter, who was autistic. The husband had a vasectomy, because they decided that she was just going to take up all of their time. It’s varied and every family’s different, and how they’ll cope and what they’ll do, but you adjust to make it fit. We all just want to have a happy home life and a happy family, don’t we? You don’t want to make it difficult for the people you love, or set them up to fail, especially your children.
Top tips for families that are newly diagnosed or looking into a diagnosis
My biggest tip would be to seek out an individual plan for your child, because up here it’s very kind of tick the boxes: yes, there’s some speech; yes, there’s an OT; yes, we can look at the diet, but I think that you need to get that initial plan to find out where their strengths and weaknesses are, what areas need more attention than others. That is the big, big number one.
Number two, if the kid is very sensory, make as good an environment for them: at home, at school, even at their grandparents, as much as is possible. If it means turning the TV down to a lower level or buying decent curtains to keep the light out, do everything in your power to make the environment as conducive for the child’s wellbeing as possible, because they’re battling against it. I don’t think it works to train them into liking bright lights, because, they don’t want the brightness. It’s like waving a spider in front of somebody’s face who’s terrified of them and expecting them to get over it now they have faced their fears. It’s not the same.
The third thing is don’t be on your own. Don’t forget yourself, because if you’re not functioning properly, then that’s going to have a knock-on effect on the child. If you’re not getting your sleep, if you’re not eating properly or if work’s really heavy, you might need to adjust and get a less stressful job, because if you’re burnt out, you’re not going to be able to help. Seek the support of groups like Autism NT, or other parents in the know.
I met other parents at TalkAbility. I’ve even had one ring me up a couple of days ago, having a tough time, and just needing a sounding-board. Just listen to them and, rather than being too clichéd and ‘it’ll be all right in the end’, if you can, try and help. I think things will get easier for future generations, because I think it’s not just the fact that the percentage of people on
the spectrum seems to be increasing, but more and more people are hearing about it, or it’s getting to the stage now where everybody knows someone who’s dealing with someone on the spectrum or has a friend of a friend, or a cousin etc.
The thing is, humans are very selfish; society’s selfish. There are the do-gooders and there’s the helpful people, but the majority of society, unfortunately, don’t read or don’t want to know about something until it affects them. I’ll say that even about myself. Before autism came up, I had a friend with a daughter that was autistic. I knew this girl had meltdowns, I knew she’d just pull down her pants in the middle of the shops, I knew all this. But I didn’t actually know anything about the condition until it actually came to my doorstep. You don’t worry about it until it happens to you. We’ve only got one brain that can only soak up so much. I can’t suddenly start being an expert on Down’s Syndrome people or autistic people or epileptic people, we’re not all trained doctors and nurses.
Patience is the biggest thing. There’s no pride in denying your feelings and there’s no pride in any parent trying to be tough and saying, ‘my kid will be right’. Get them the help that they need. Get them the assistance and you’ll have a much better relationship with them, because at the end of the day, that’s all we want, isn’t it? We want to get on with our children and our families as best as we can.