I have 2 children on the Autism spectrum; Michael aged 15 and Heather who is 12 years old. They both have a diagnosis of Asperger’s and ADHD. They have 2 siblings Amanda, 19 and Christopher 14.
I would describe Michael as quirky and interesting. He is interested in building things and taking things apart. Rick and Morty is a huge thing at the moment but his focus is mostly on Lego. He’s building inventions and monsters. Michael’s on fluvoxamine because he’s got anxiety and it helps, he has previously been on Ritalin.
A typical day for Michael is difficult. He doesn’t always sleep well but when he finally does fall asleep, he sleeps really deeply and he’s difficult to get up in the morning. He’s not happy to be awake but he gets better once he gets warmed up. He’s better on the weekend. He doesn’t really look forward to school so his mood fluctuates depending on what he has on during the day. If his first subject is something that he doesn’t like, he’s not very cooperative in the mornings. He eats like a horse since he’s come off his medication, so if there’s nothing in the fridge that takes his fancy, he shares the joy.
Michael doesn’t like wearing a school uniform. I told the school that he doesn’t like it because it is quite formal; they have tailored pants and a shirt. He doesn’t enjoy the way that it feels; it’s not soft and t-shirty. They’re a bit better now that they’ve been laundered to within an inch of their life but he doesn’t like to wear a lot of clothes. He’s more comfortable in swimmers and no shoes. He’s much happier at home than he is going to school. Michael has a lot of sensory issues as a part of his Autism Spectrum Disorder (ASD). He doesn’t like certain tastes and textures and smells, and doesn’t like a lot of loud noises. I asked him this morning ‘what is it like to be ASD?’ and he said ‘loud’.
There are kids that he knows at school that he thinks are his friends, so in his mind, he has friends. Some of those kids are not very nice to him, but he doesn’t get that. There were some girls that were really nice to him, but they’re not friends per se. He has friends that he hangs out with from the Autism NT Dungeons and Dragons social group that he goes to. The kids there are really great. He’s got friends in Sydney as well from where we lived before. We do seem to attract ASD people. He’s better with kids that are younger or older, he’s not so great with kids his own age.
Heather is energetic and a ball of energy. A typical day with Heather is loud. Heather also does not sleep well, but she’s pretty good to get up in the morning. She’s very excited to get going and to be doing things in the day. She’s normally completed a whole day’s worth of activities before she’s even left the house. She’ll have: watched TV, played, made Lego, played with the Guinea pig, run around, and danced and this is all in the two hours before she goes to school. She’s always going and she’s always excited about everything whether it’s how she’s going to do her hair or what she’s going to have for breakfast. Everything’s just rah, rah, rah.
Heather’s in Year 7 but she doesn’t always like school either. She’s okay at home though. We’ll get in the car and she’s like ‘aw, I’ve got this subject. I hate this subject. Oh, I feel sick. Can we go home?’ I tell her that she can’t and that she has to go to school. She’s managing better now, she wasn’t going to all of her classes and now she is. Actually, she’s going to every single class, which is huge.
The main differences between the two children are that Michael is more reserved with the other kids. He does get boisterous, but not like Heather. I think because he’s older he’s learned to stop and watch a little while before interacting with the other kids, just to gauge the waters and see how things are. Heather acts before she thinks. We’re forever going ‘stop, think, do, Heather’ and she’ll go, ‘oh I shouldn’t have done that’. Michael’s getting better at the thinking before he does anything, Heather’s not so much.
Heather was on the some medication but she’s come off that now but she’s still takes fluvoxamine. She’s on clonidine as well and it’s helping a lot with her emotional outbursts. Michael’s coping much better off the medication than she was. She’s doing a lot better and this other medication’s really helping. Her school’s noticed a huge difference.
Noticing developmental differences and getting a diagnosis
When Michael was 15 months old, we had his younger brother Christopher, so we weren’t sure whether his behaviour was because he was really unhappy that someone else had come into his life and he wasn’t the king anymore, or whether there was something else. When Michael started emptying the fridge and lining everything up all the way down the hallway, sleeping with a green bucket full of green cars, and his bedtime choice of story was a John Deere catalogue, we pretty much we figured that, yes, he’s a little bit different to the other kids.
We were living in Toowoomba when Christopher was born. When Michael started showing that he was little bit different, I was in denial. I had a friend whose son was on the spectrum and she said ‘he’s so got autism’. I went ‘no, my son does not have autism’ and then I thought about it a lot more. When we came to Darwin after Toowoomba, he started primary school and his teacher there had a daughter on the spectrum. She was nice about it and said to us that she really thought that there was something different about Michael. I said ‘I really feel that there’s something different about Michael, too’. So we went from there and saw the paediatrician. She was fabulous.
I was in denial for a lot longer with Heather because you have to change your thoughts about everything that you had planned for your child. It just took me a little while to get used to that. But it’s okay because she is who she is and she’s going to be who she’s going to be and it was my perception, not hers, I just had to get used to it. We noticed that she was developing differently when she was two years old. She was two when Michael was diagnosed and it felt like we had two peas in a pod because she was very similar. She did some things that other little girls did but wasn’t into the dollies and the cutesy things. She was into the same things that Michael was into. Her favourite Christmas present was a doll in a truck. But she didn’t want to play with the doll as a doll, it was just something to put in the truck. She liked to put things in her little bag and she’d have a collection of things. Everywhere we went, we had to wait for her to get her collection of stuff before we could go. It would be something that meant something to her but was complete gobbledegook to everybody else.
I think because I dug in my heels for so long, she wasn’t diagnosed until she was in Year 3. The teachers were saying that we really needed to get her diagnosed. I was getting pushed from many directions. It wasn’t that hard to get a diagnosis, I walked into the doctors with Michael and Heather, we were there for Michael, and the doctor turned around and said, and ‘she’s next, she’s ASD’ and I went ‘okay’.
I think that the doctor had ASD and probably should have toned that down a bit because it was really difficult to hear. A couple of the medical professionals have been quite abrupt and difficult, and not very cognizant of the way that we feel. It’s really hurtful. It’s really hard to have kids with ASD and then to have people be so negative or forceful in their opinions, is challenging. We’ve had some really great doctors and we’ve had some really great teachers but we’ve had some really horrendous ones as well.
We had a doctor here and when he first met Heather and Michael, who are quite thin (as is my husband), I was prejudged on how I am as a parent. I’m a terrible parent because I’m obviously not feeding them and obviously not doing the right thing and they were sent off to have a barrage of tests that were really invasive and unnecessary for the kids, to the point where Heather was really traumatised about having to have all of these extra tests that we didn’t need. If he’d just read the doctor’s notes from the previous doctors that I had brought with me, it would have saved a lot of heartache. It was really hard for me to return to the doctor. A lot of people said ‘oh, you shouldn’t have gone back. You should have gone to someone else’ but I’m scared of getting that treatment everywhere I go because it’s not the first one that’s treated me like the worst parent on the planet and it’s really hard to take.
Doctors and educators don’t often speak to me in a way that makes me feel empowered. It’s really nice when they do. We had a doctor in Sydney and he would say to me, ‘you know what, the mother knows best. She knows what’s going on, with her child and I want to listen to what you have to say before I do any of my diagnoses’. I’m very happy to be going back to him when we move next because that’s such a rare occurrence.
It didn’t take Michael very long to get a diagnosis because his teacher and I had already discussed it and we went to see the paediatrician who gave me the forms to take to the school. I filled in the forms and by the next visit, she’d said ‘well we knew he was going to be ASD’ and wrote the diagnosis. It was pretty quick process for both of the children but I documented everything before we went in. I took a lot of pictures. Michael doesn’t like his food to touch and neither does Heather, so I took pictures of their plates. I’m pretty much spectrum myself so some of it I found often really hard to explain, so I figured a picture says a thousand words. I would say ‘this is what they eat’ or ‘this is how they sleep or this is how they dress’ and it made the process much easier for me to be able to say what my concerns were. When I went in with Michael, I had two pages of notes because I just didn’t want to forget something. When I knew I was going in, I just started jotting things down so I could ask the doctor ‘is this normal or is that normal?’ I think because it had been so hard for Michael, I really didn’t want it to be that hard for Heather.
Michael has found it hard at a lot of schools. When he was younger he didn’t notice a lot of sensory things in his body so he couldn’t understand what hungry felt like and he doesn’t always understand what needing to go to the bathroom feels like. I tried to explain that to his teachers, but they don’t listen. He doesn’t get a lot of warning between going to the bathroom and actually going. They made him sit in a chair in his classroom and pee his pants until it ran over the sides of the chair and onto the floor in front of a whole classroom of children. I’d love to say that hasn’t happened to Heather, but it actually has at another school by another teacher who didn’t understand. I think I just didn’t want to face the reality that I’d have another confrontation on my hands because sometimes going to school or going to the doctors feels like a huge battle trying to get people that understand how to help your child.
I don’t have any family here because we move around a lot for work. The support system pretty much lives in this house. My parents do help out but they live in Townsville. Usually, they come twice a year to give me respite but they’ve been really unwell this year, so I haven’t had a break. My husband’s away a lot and he hasn’t spent much time with the kids because of the job that he does. He doesn’t always have as much of an understanding as I do and he’s a bit harder on them than I am. It tends to make it more difficult for him to look after them.
We can’t get babysitters, we’ve chewed through babysitters. No one wants to watch my kids because you have to watch them. You can’t watch TV and have them milling about. Michael has put a paper towel in the toaster to see if it burns; yes, it does. So do curtains; don’t do that. He wanted to see if you could run a light bulb through a power point; no, you can’t, it throws out the power, please don’t do that. It takes a special kind of person to be able to help you out. I do have friends here. The girls at Autism NT are awesome and I’ve phoned them way more often than I should, mostly to commiserate but because she’s a friend too and she understands. I can say Michael did this and she won’t be tempted to ring up and complain to the Department of Children and Families because she’s like, yes, that’s actually normal. But other people would be like, oh my God, what has he done?
The other support I have at the moment is that I’m seeing a counsellor because it just gets too much. I haven’t been able to go to parent support groups because I can’t leave the kids to go and do that. If they’re not at school, they’re with me or with Amanda, my daughter and if she’s studying, then they’re with me so I don’t have a lot of leeway to do that. I can’t really go out at night because Heather doesn’t like me being out and she’ll call me 50 times until I come home, so I don’t go. But I talk to other parents. There are other parents from the Dungeons and Dragons group that go to the same school and we will sit out the front while we’re waiting for the kids and just appreciate how nice it is to just to sit there and talk to someone who understands.
Resources and Therapies
We’ve tried, I hate to say everything, but we’ve done a lot of different things especially with Michael because he was diagnosed at five. We were on the waiting list up here for services but we never made it to the top of the waiting list before we moved. After we moved, we went privately and Michael’s seen about three different occupational therapists. He’s seen psychologists. He’s been to all different kind of social groups.
I think it all works when they’re ready for it to work. I’ve given Michael all of the tools, he just needs to be ready to use them and sometimes, it’s not at the same time. We’ll finish with an occupational therapist and we’ll move on and then a year later, he will use something that he learnt with the therapist and I’ll go, wow, that money was well spent. But at the time I’m thinking why I wasted my time going because it didn’t seem to be working.
I think we’ve concentrated on occupational therapy because he has so many problems with his gross and fine motor skills. He couldn’t do up his own shoes. He has trouble holding cutlery and still doesn’t cut like regular people do but he can cut food so I don’t care, but occupational therapy seems to have been the big thing that has helped him physically the most. When he was seeing the psychologist, it was really good because she was saying to him the same things that I was, but she’s different so he would listen to her. Everything helps, you just don’t know which bits going to work for you. Try it all.
Heather’s been to social groups, occupational therapy and speech pathology because she’s got a little bit of a lisp. She hasn’t been to a psychologist, as yet but I would say that’s coming on the horizon. I think the biggest thing for her was learning martial arts, which was when she learned to put her hands up and not fall flat on her face. That was the biggest help that we had, so help comes from an unlikely place sometimes. Not that the occupational therapy and speech pathology weren’t great, she really loved going. I think she loved the attention because she’s ADHD as well and she really loves the social groups. She hasn’t got to the maturity level where she’s used any of those tools yet.
For Michael, his favourite place to be is going to the Autism NT Dungeons and Dragons club. It’s the only place he can be himself and be celebrated and liked for it. During a conversation with the school they asked what I was doing to make his social skills better. I told them that he goes to a social group every Wednesday and that he loves it. They asked ‘well how does he do in that?’ I replied that ‘he’s in a room full of kids with the same diagnosis as himself, he does really bloody good. You see I don’t have access to a classroom full of normal kids for him to practise on them, you do’. So they didn’t like that very much.
The kids are now at the same school because Heather’s gone into Year 7 but they ignore each other. They hate each other at school, it’s horrible. In regard to support systems, there is an inclusion support unit. They’ve got a new teacher there now. With the last inclusion teacher, I just seemed to be emailing her all the time and driving her totally mad because they were just doing insane and stupid stuff and obviously they had no idea what ASD was. My biggest pet hate is when someone will say, I taught an ASD kid before, I know what I’m doing. That’s not right; you didn’t teach my ASD kid before so you don’t know what you’re doing. You need to listen to me and if we can work in conjunction, it works really well.
With Michael, they’re actually not giving him any classroom support. We’ve been battling with that for more than a year now. Apparently, he’s too difficult to work with. He’s actually not but I think that their version of difficult is vastly different to mine because I work in a public school and he is in a private school. Their version of difficult is if he says, ‘no’, when he doesn’t want to do something, and my version of difficult is they throw a chair. I think they need to get off their high horse and help him a bit more. So to get around the school, not get around them but too make it work for our family, I liaise directly with the teachers. They tell me when something’s coming up and I make sure Michael’s doing it. I email it to them to make sure he’s on the right path and then he finishes it and gets it in on time. That’s the support we’ve got going for him at the moment.
The new teacher who’s running inclusion for Heather is very good. He gets along very well with her. He actually gets on very well with Michael too but Michael doesn’t want to be seen as different. Heather is getting support but when someone pokes you, literally pokes you and says ‘do your work’, that’s not support. Support is saying, ‘do you need help?’ or reading the question or actually helping them. Saying ‘do your work’ is not support. That’s not on. Touching my ASD child or poking someone who has sensory issues is really not a good idea. That’s not supportive at all. I would never do that to someone’s child. That’s awful. If she can’t do it, it’s because she doesn’t understand the question or she missed a piece of information when they were explaining how to do the work and all she needs you to do is to explain it again, and in a different way.
I know with both of the kids, if I read the question out to them and they hear it instead of reading it themselves, they’ll say, ‘I know what I’m doing’ and then they just write it down. Sometimes help is as simple as that, reading out the question. Give them space. If they’re twitchy, give them a break. Don’t punish them for wanting to get up and move. They can’t help that. Don’t give them detention because they’re calling out in class. If they have ASD and ADHD, they can’t help calling out in class. They’re not doing it to make life hard.
Heather’s been getting lunchtime detentions for calling out in class and I’ve said to the school that they can’t punish her for something that’s part of her diagnosis. You are not allowed to give her detentions. The school pretty much hates me right now, which is okay, because they are not giving her detention for that anymore, which works for me. I have suggested that a reward system works better for her but they didn’t like the concept of a reward system. I said, we’re talking about a sticker chart ‘you did well, here’s a sticker’. ADHD and ASD, she just wants attention. She doesn’t care whether it’s positive or negative. She’ll take whichever you’re going to give her so if you want to yell at her, she’s just as happy with that as if you praise her. So ignore the stuff that she’s doing wrong. Reward the stuff she’s doing right and make her want to do it. You can’t force them to sit there and do it. It’s ridiculous.
How our family’s life has changed
ife has changed for us big time. It’s not what I expected it to be. We’re not like the families you see on TV, that’s for sure and we’re a lot more self-sufficient. It’s much easier as we have four kids as there’s always someone to play with here so we don’t really need to go looking for someone to bring home to play. We do, but it’s often hard to have other kids here because unless they’re spectrum they don’t understand and there are a lot of kids here, so it gets quite difficult.
My family have been good and really helpful. They’re very understanding. My husband’s family has said they always knew there was something wrong with those kids, which was really hard, since they’re the spitting image of my husband. I am not aware of other members of our family on the spectrum. I think that my nephew is very ASD. He likes the rules and he’s a good boy. He functions really well at school where the rules are really clear and he’s very quirky, just like my kids. He likes the same kind of stuff that they do. They get along like a house on fire. I would imagine that I am on the spectrum and my dad thinks that he might be too.
When our extended family members just don’t get their ASD traits, I try to protect the kids from that because they get enough negativity everywhere else. There’s no way, they’re going to get it while they’re with me because this is their safe place and that kind of negativity is not welcome in my house. If we’re going somewhere to visit them, because we don’t live in the same town, we just try and manage it. I make sure our visits are in the morning because that’s their best time between say 9:00am and 11:00am before they’re too hungry at lunch. We try to make it at the optimum time and at a place where I can control the kids or at least entertain them. We went to mini-golf, which was really good because they like mini-golf. They’re good at mini-golf and they wanted to show their skills off. They’d been before so they knew the rules and the track. As long as we’ve got a little bit of control about it, we can make it work for us but that’s the only way it does. If we have to go and visit the rellies and dinner is late, it’s just a nightmare. The kids will lose the plot and have a meltdown and then I’ll be the worst parent in the world and we just don’t want to go back. We just try and make every interaction with the extended family as positive as we possibly can. That’s the best I can do.
There is a feeling of isolation with having to keep everything contained. I live at night. I phone my friends or text them but that’s the best I can do. I live on Tetris or I read a book and pretend that I live a different life. I read a lot. I enjoy my kids and we spend a lot of time doing fun stuff. Heather and Amanda love to cook. Michael’s always making things. He had an art exhibition on the weekend, where he put out everything that he’d made and we had to go along while he explained everything to me, so it’s never dull and there’s never a moment where I’m sitting here thinking ‘oh God, I’m so bored and lonely’. Normally, I’m too tired to be bored with my life. It is hard.
Some aspects of life are getting easier but some are getting harder, it goes in waves. When the kids were little I thought that it couldn’t get any worse. I was wrong, it can and it does but then we have days that I’m like, I’m so glad I’m your mum. Because I work at a middle school, with kids that are aged the same age as Michael and Heather, I’m grateful for my kid’s sense of humour, the way that they talk and their compassion to others. Things that some of the other kids their age just don’t have. I love having my little, shrunken adults. They’re really cool and my kids are quirky, they like interesting things. They’re not interested in being a sheep like everyone else in life, do all the same things or dress in all the same way. They want to dress the way they want to dress and they want to look at the things that they like. They’re not easily influenced by their peers and I think that’s great.
For their siblings, I think ASD has always been a part of their way of life, so we just manage the best that we can. The best thing about coming to Darwin is that Michael and Christopher got a room each of their own so Christopher can just withdraw to his room. It’s his haven, no one’s allowed in and no one can touch his stuff. When things are too hard, he just goes in there and doesn’t come out. It’s nice for him to be able to do that as he hasn’t been able to before. It’s been really hard for him to have to share a room and share everything with Michael. They’re only 15 months apart so they’ve had to share friends and clothes.
Amanda and Christopher are addicted to the internet; they’re forever on Tumblr or something. They’ve got their external friendships and they’re always talking to their friends online so even if they’re home and they’re having a hard time, they’re talking to someone else or getting out of the space. We do tend to attract other ASD people so a lot of Christopher’s friends are spectrum. He has the learned behaviours and he’s quirky, but he’s not on the spectrum though most of his mates are, which is cool because he really understands them. We call him the Leonard to the Sheldon’s.
Christopher doesn’t feel restricted because he doesn’t like other people anyway. He doesn’t want people here, this is his spot. He’d like to be in his jammies on the internet. If he’s going to interact with his friends, he’d prefer to do it in the comfort of his own home. Amanda is the same. It’s too hard for us to go out. If we go to the shops, it’s just a huge meltdown and no one enjoys it so it’s much easier just to be here. I guess it is a bit restrictive.
Hopes for the future
My hope for Michael is that he can be happy, that’s it. I’d like him to be as independent as he can. He’d like to have a family. I think he’s doing really well towards being independent. He’s looking forward to going to work experience next week so we’ll see how that goes. He’s very excited; he’s going to Crocodylus Park. He’s excited to work with the animals. He wanted to go and do some stuff with a trade, but he injured himself at school and I’m not going to let him near a sander because he doesn’t feel heat and pain. He fed his thumb into a sander and took the top off it. After having to have him in hospital and have plastic surgery, I’m not comfortable with him being near tools and neither is the school. So we tried to pick something less dangerous, like Crocodiles! He’s always been interested in bugs and insects and reptiles, so he was really happy to go there and it’ll all be just taking care of the grounds and picking up stuff and feeding animals. He feeds our animals and mows our lawn and he’s okay with all of that stuff, so it’s not a big leap for him.
Heather wants to be a chef or a vet or a mermaid. Yes, she still wants to be the mermaid. She’s practising the chef side of things and I’ve gained 8kg eating everything because she’s just forever making dishes. I’d like her to be independent. She would just like a boyfriend; I’d like that not to happen until she’s 30. I just want her to be happy and independent, that’s it.
The hardest part about having a diagnosis
With Heather’s diagnosis, the delivery of it I think was the hardest part of it. I was really pleased to see the back of that doctor and to go to one that was a little better. And having to reassess what you think your kids are going to do is challenging. Kids are born and you think, oh they could be anything and then they can’t and that’s really hard. But again, that’s me, not them.
If I could go back to when Michael was first showing signs of ASD, I would have tried to get him diagnosed earlier and get more of the early interventions. I really think it would have made a huge difference for both of them in hindsight if they had. I know other kids of similar ages with similar diagnosis that we’ve grown up with that are now coping a lot better than my kids are.
Current level of functioning
I’m happy with the children’s level of functioning now. They’re my kids and I love them and I’m happy with whatever they can do. I say to them if a grade of D is the best that they can do, then I’m really happy with that but if an A is the best that they can do and they’re not trying, that I’m not happy. I’m trying to be realistic about what it is that they can do and be happy for what they can do. I’m trying to be more glass half full than glass half empty.
Partners and parenting styles
Parenting wise, I think we should be on the same page so if the therapist has said for us to do something or we’re doing something that works, we should talk about it and try to do the same thing. Because me doing one thing and him doing the other isn’t helping the kids, they need consistency. We as the adults have to make the consistency. We need to talk about what it is that we’re going to do and it’s really hard because there are so many different aspects in their lives that you have to do something in. But I’m lucky that my husband defers to me, he says ‘you’re the expert, you get to tell me what to do’. He doesn’t always do it, but he says the right things.
Telling the children about their diagnosis
We have told the children about their diagnosis ever since they were diagnosed. We’ve always been very open about it and that it’s not a bad thing. They’re not broken. They’re definitely not broken. They’re wired differently and they’re special. We are happy with the decision that we made. I’ve seen other parents that have hidden it from their kids and then some classmates will say something to them and they lose the plot because “what I’ve got this? Really? What’s wrong with me?” Nothing’s wrong with you. You’re different. I think being open is the key, but I guess everyone needs to decide what they feel is right for their family.
My children ask me questions all the time about ASD and they talk to other kids about it. They’re very open with their diagnosis. They tell everyone, even people that we meet at the supermarket. It can cause consequences for them, it’s lost Michael a lot of friends but it’s also made the school have to do some interventions that they weren’t planning on having. They’re going to show the Temple Grandin movie and educate the whole of year 10 about ASD because the kids are just not getting it. They were using autism as an insult and I didn’t like that very much, so I went in and jumped up and down a lot.
There has been a lot of bullying including physical bullying. The name-calling is always going to happen but when they’re pushing Michael around like a ping-pong ball, making him whack into things, I’m not very happy with that. The boys are very aggressive; but they’re not really great with words anyway.
Heather does receive a fair bit of bullying but sometimes I don’t know if it’s because she doesn’t understand what’s going on because of her communication problems. She’s may have missed a bit of the conversation and misunderstood the context and that tends to cause a problem. Sometimes her perception of bullying is different. She’ll say, ‘oh they’re bullying me’. I tell her ‘no they’re just telling you that you’re too loud, that’s actually not bullying’.
What I like the most about my children
Michael’s funny. He’s smart and he’s the nicest kid. He’s so helpful and would help anybody. He’s great, I like everything about Michael.
Heather is the sunshine in my day. She is the happiest, most energetic child you could ever meet, and the most creative. She can create something out of nothing and then it will be art, which is fabulous.
Top tips for newly diagnosed families
My tip is to talk to other parents. Talk to someone with a diagnosis and commiserate or celebrate and feel that everything that you’re feeling is normal. It’s not weird. Talk to other parents and take care of yourself. That’s a big one I’ve actually learnt quite recently. If you can’t take of yourself, you can’t take care of your child. Get lots of sleep, you’re going to need it. You need the sleep! I’ve been tired for years.