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Jodi’s story

I live with my husband, David and four children. I have two children with autism; Emma who is 13 years old, was diagnosed last year and my second child Liam, 11 years old was diagnosed until about four or five years ago.  My other children, aged eight and seven are not diagnosed.  I have suspicions that they qualify for a diagnosis, but I think that the way that we manage our family is very supportive of their needs.

About Liam (aged 11 years)

Liam was always a really difficult child. He was: quite bouncy, very clumsy, he would hurt people and he did not know his own strength. He could not understand what was going on, but we thought he was just a toddler and going through the terrible twos.

When Liam was three, Alexander came along, so then I had a baby and Liam, who was quite difficult.  My daughter Emma, naturally stepped into that mummy role and helped me with the baby. Within 12 months of having Alexander, my fourth child Catherine was born. Liam was four years old and Emma again was being very supportive.

I had some friends over once, and Liam had a meltdown. I remember having to lock him in his room because he was banging on things, kicking and hurting other kids. I had a sore shoulder from holding that door shut for 45 minutes where he just continued to meltdown. I didn’t know what was going on, but he was in there, he was safe, we were out, we were safe. I didn’t know what else to do, and my friends were continuing to have their coffee out in the lounge.  This was part of becoming normal for me. I wouldn’t go to friend’s houses, they would always come to mine. They knew what would happen, but at least we were in our own environment, and I wasn’t having to manage that with two babies. That’s where things became difficult for us.

Liam was very bright. At age three and four, he was adding and subtracting, he was really engaged in the computer, and playing learning games. At pre-school I said to the teacher, ‘I think he’s a little bit smart. I think you need to maybe see where he’s at. He’s adding and subtracting and he’s three’.  She responded that he was just a typical kid and that they have had no issues, so I left it at that.

My mum came to visit because we weren’t living near her. She was about to leave for the airport and we were out in the driveway, saying goodbye.  Liam looked up and me, and said, ‘Mum, my eyes are leaking’. At the time I thought, ‘that’s a really odd thing to say’. He was obviously quite teary and emotional.  That was something that I kept that in the back of my mind for ages.  But again, in hindsight, this was him not understanding that emotion; this was him having a physical response to a situation where he doesn’t understand the emotion behind it. That’s now what I reflect on.

We moved when Liam was four and a half, to Darwin, from Bunbury in WA, and he started school in transition up here.  Again, he became quite obsessive with what he would do at school, he would just play with the foam blocks. His reading level was very consistent, it didn’t progress at all the whole year. He would have violent outbursts at school as he just wasn’t coping. I didn’t know what to do. He was then coming home being aggressive, he was hurting the little kids, and it was difficult. The reason why I started pursuing a diagnosis was that we were not coping. I needed some support and to find out what was going on.

So, our journey started then for him, we were referred through the public system to a mental health diagnostic centre. We saw what I think must have been a student psychologist, who was amazing really. She listened. We knew she was under the guidance of another psych, but she was really good. We saw her for probably half a dozen visits, and she got to know Liam, and then she suggested, ‘I think he’s quite smart. I think we might do an IQ assessment’.

I didn’t know what that meant but I knew he was a bit smart, so I agreed. She did an IQ assessment on him. I think it was the Wechsler Intelligence Scale for Children (WISC), and we went in and saw her for the results. She said ‘I don’t know what’s going on. It’s come back that he’s just average. It’s not showing that he’s bright like I think he is. It’s not showing anything’. I just left that meeting thinking, we still don’t know what’s going on and we still are nowhere further along after all these visits.

I was driving home from that appointment when she called me back. I pulled over to the side of the road and she said, ‘I’ve made a mistake. I put his birth date incorrectly into the system. He’s extremely bright’.  He has an extremely high IQ. He was six at the time, but his functioning was that of a ten-year old, and that’s where his challenges would be coming from.

I still didn’t know what all this meant. Okay, he’s bright, now we know something about him, that’s great. Then we had a few more appointments, and it was articulated to me that, yes, he’s got a very high IQ. We met with the senior psych at the time; he assessed Liam with the other kids in the room and how he socialised.  We got a letter saying, your son is gifted. He has some sibling rivalry issues and a couple of anger issues, and a lot of his issues are because he’s functioning at a much higher cognitive level. Thank you very much, we can no longer support you.

I’m like, I still need support, this has not helped me with anything! You’re telling me he’s really bright, but I want to kill him. I don’t know how to manage, it’s not good for my family, I’m yelling and screaming. My other kids are feeling threatened, that’s not okay. It can’t be okay.  I decided to go and do some parenting courses. Being the good parent I am, I did the Triple P Parenting, and the 1-2-3 Magic courses, and the guy there was great. He goes, ‘I don’t think any of these are going to help you, maybe you need a one on one where we can mix the two together and try and come up with a plan’. 

The problem was, Liam was so bright that he would use anything you said so literally that if it wasn’t how it was going down, he’d point it out. So, if your behaviour plan said, ‘okay, you lose five minutes if this happens’, or whatever, and he didn’t lose five minutes, he’d point that out. But then he would go, well, you can’t give me five minutes now because you didn’t give me five minutes last time.  And so, it became verbal. Verbally, he was very able to fight back, and you would just get in this circle where you’d just go around in circles. Because he’s able to manipulate your words so effectively and so literally, you have to just completely know what you’re saying ahead of him.

I did the parenting courses, I had a psych report, I’d been to the mental health diagnostic centre, and was told that they didn’t support giftedness there, so we needed to find a private psych. We took all the reports to another psychologist and she said, ‘there’s something going on, but I’d have to do all these tests, but he’s really bright, I don’t know. We can do this test, and this test and this test, and then we will meet back together, and then we will find out what’s going on. And then: we’ll do this and this and this…’. I was like: where’s the end going to be? What do you think’s going on? How am I going to get help if I wait six months and spend all this money? What would the outcome be?

At this stage, autism hadn’t really come into the conversation.  They gave me all these reasons why he wasn’t fitting in due to his giftedness and why they couldn’t do anything about that. There is no support for gifted kids, you are just sent off on your merry way.

We didn’t have quite a very good experience with that psych. I didn’t feel comfortable, she wasn’t able to deviate from just the gifted diagnosis because Liam wasn’t textbook, and she wasn’t able to then make that ASD diagnosis. We ended up going to the paediatricians within the public system a few times. They said, ‘he’s got some ADHD symptoms, but his aggression’s quite bad. We’re not going to diagnose him with anything, but if you want to, you can try this medication. It’s actually a heart medication, but it can reduce aggression in some kids. So, if you want to try that, then that’s okay’.

I’m like, ‘you’re not going to tell me what’s wrong with my kid, but you want me to medicate him with a drug that’s not even for what you think he’s got?’.  I said, ‘no, that’s not cool. That’s not helping me. I want to know what’s going on, so I can help him. I don’t want a quick-fix and I’m not just here to medicate him, that’s not what I want’. So, we stopped our going there as well. At this stage we had been seeking a diagnosis for about 18 months.

We started school at Public Primary School number one (PS1). He was suspended in grade one, for biting a year five child until they bled. The child stood on his sandcastle, accidentally, whilst running through the playground. Liam jumped on the kid’s back, and bit into him. He was suspended because there was blood. The was a media alert to the minister’s office, because of the blood, and they were concerned that it might be picked up by the media. I said ‘like seriously, you’re going to suspend him, he’s in grade one’?’. They said that they had to because that’s what the procedure said. It wasn’t a very supportive environment. I wasn’t able to work with them to meet his needs as they weren’t supportive of that. He’d done the wrong thing, too bad, you’re out.

We then moved to a Catholic Primary School (PS2), where I’d become involved with Gifted Education through the Northern Territory Association for Gifted and Talented. One of the members there was working at that school, and I particularly wanted her as a teacher.  She was teaching the appropriate grade, so we moved over. I felt that then at least some of his gifts will be met, she would understand him which will be helpful.

He was in her class but he was really still quite difficult because this was still before his ASD diagnosis, but he was extended a little bit and he did manage okay. Then he went into year three, into a co-teaching situation, where the teacher for three days was awesome, had all these rules and regulations and then Thursday, Friday, he would fall apart because the other teacher didn’t have the same rules. So again, when he came home, he’d be more aggressive and violent, and that’s when we started seeking that last lot of ASD diagnosis.

Each time we have a new specialist, I have to start our story all over again. It was recommended that we see another local paediatrician.  Again, I laid it all out on the table and told her the whole story of where we’d been and what was going on. At the time I’d also heard about another clinical psychology unit and their assessments for ASD, by then I started wondering if maybe it was autism. I had learnt a bit more now about giftedness, and about how the presentation of that can be quite similar.

I started thinking, well, if it is autism then I’m going to get help, and I’m going to get the right sort of help. I was very fortunate that through the clinical psychology unit, I actually got the senior psychologist. Her experience was demonstrated by her understanding of me and of what was going on.  She was instantly able to weave out all the fluffiness of the previous diagnosis and to find those key points, including that he needed support. I think that her interview technique is so different to the Autism Diagnostic Observation Schedule (ADOS), and so much better for me and my experience. It came back that Liam was diagnosed as ASD level two, and that he was likely ADHD, and borderline ODD. We began medicating him straight away. He was in grade three at school by this point.

After the diagnosis things were hugely different because the services open to him were supportive of his needs, and that’s all that I was looking for the whole time.  I needed help, to help him, and if it’s ASD, then it’s ASD.  Don’t beat around the bush and tell me he’s gifted and bright and to go and do a parenting course. That was not helping me. I think the point of my story is that if you get that first no and you’re fine with that, and if you’re going to keep carrying on the way you have, that’s okay and that’s your business.  But if you know that it’s not okay to continue the way you were, you need to keep fighting and advocating for your kid even if it takes you four or five different professionals. Don’t stop until you find that help.

When Liam was medicated at age eight, it improved his behaviour a lot.  It helped with his focus and concentration.  After I got the gifted diagnosis, I went back to the school, and told them that I had gotten the psych report and that he was ASD and gifted. I had told them that he needed to improve his reading, but he was still only reading at a level six! They tested him and within a week he had gone from a level six to a level 23, which is well above where he should have been in that even grade.

When they were testing him, he was being so literal. When the teacher would ask, ‘what’s happening in this story?’. He would tell them, and he would just answer the question exactly as they had asked, and tell them exactly what they wanted to hear, which was exactly what was required for that level. He wasn’t able to show more in-depth knowledge because they weren’t asking him to.

That helped Liam, and then because he is also gifted, he requires a modified education plan but previously because of his behaviour and his socialness, awkwardness, and not being able to function in the classroom very easily, they weren’t able to support that. Without being able to support that, you still get the challenging behaviour because he’s bored, and he doesn’t know what to do.  So, you find yourself in a catch-22 position, the autism diagnosis was able to then highlight that giftedness more. It was able to point out that he is really bright, and he is only going to do what you ask him to do and he is not going to do anything more.

Soon after he was medicated it helped his behaviour a lot, which we were able to maintain for a very long time, I don’t know how we survived before because it became so much more manageable. The tools and resources that I had learnt in the Triple P and 123 classes, were able then to work a little bit because he was able to focus a bit more and think about what was going on, so that it was a much better time for us.

My youngest daughter is also gifted, and she early-entried into transition. Even after a big fight, and obtaining reports, that she was school-ready, PS2 wouldn’t accept her but a private  school (PS3) would. So, she went to PS3 for 12 months, and the other three kids were at PS2.  At the end of that first year of transition, I asked PS2, if they would take her into year one now so all my kids could be together.  They said no, as her birthday’s in the wrong month and that she would need to go back and do transition again.  They didn’t want to talk to me about it and there was no discussion about where she was at academically or what her needs were.

I decided that I couldn’t work with a school like that. I cannot work with an institution who just shut me down because ‘this is the rule’. I needed someone who’s going to be supportive of my kid’s needs, and then meet those needs and then be on this journey together, and I didn’t feel that with PS2. I moved all the kids over to PS3, because Catherine had had such an awesome experience. I got a job there; all the kids were there. I knew the staff, they knew Liam before they got him in class.  I was very open about his needs and where he was at and what he needed support with. They took that all on board, which was great. It was hard during his first few meltdowns I was working in the same room as him, other people had to manage him, and I’m having to work.

But we sort of got through that transition until year six, term three when he threw a chair at a teacher.  The teacher had told him that he had no friends. She then said to his friend, ‘I don’t know why you’re friends with that kid’, in front of the whole class. This caused Liam to pick up a chair and throw it in her direction. It didn’t get her; but he then chased her out of the classroom where another teacher got between the two of them, and he was expelled.

I asked him how it made him feel when the teacher said that to him.  He said that ‘it made me feel like throwing a chair’. Of course it did! It would make a normal kid feel like throwing a chair if a teacher told them they had no friends. He just wasn’t able to not do that. I said that he was allowed to feel that as that was a real feeling and that I’m not going to take that away from him. He said that ‘I didn’t hit her’ but I told him that they didn’t see it like that.

So, again, we’ve reached a point where there was no support for his needs. He was in a class of 12 kids with a teacher assistant in there half the time, and he still couldn’t be successful. They couldn’t meet his needs. He was off for five weeks while we found another school for him. We really considered whether we would even put him in a school for the last term because that’s a huge transition to a new primary school and then again into middle school.

I had meetings with Legal Aid, paediatricians, and the Department of Education regarding where we could put him.  The Paediatrician was quite supportive of him still going to school. We needed to keep a routine for him. So, it was suggested we try Government Primary School number 2 (PS4), and they were awesome. Again, went in there: this is how it is, this is what can happen, this is how he is, and this is the support he needs. We laid it all out on the table just like it was, and we did not sugar-coating anything.

They said, ‘okay yes, we’re going do this, we can do that, and yes, we want to support him’.  He started at PS4, week two of term four. Liam asked me ‘Mum, just find me a school so I can go to school, and be a normal kid’.  But you’re-not-a-normal-kid, you need a whole bunch of stuff going on around you and you need support. We need to wait until we can get that for you.

PS4 were very supportive. I found that they were receptive of working with us in ways that other places hadn’t been in the past. We were able to then lay it all out there. He did quite well, but he did get teased a lot. He would come home and say ‘Mum I’m not going to school, they called me retard’ and things like that. That was probably the second week there, so he wasn’t having a good time. He didn’t really make friends, because they’re all year sixes, and they’ve all made friends. They’re all in their groups already, and he was an outsider.

So, he got to a point where he was doing quite well and like they do, they withdrew the support. He went on an excursion and a teacher again made a comment that was inappropriate. Liam had gone to a performance at a Government Middle School (MS1), so the context was, it’s loud, there’s lots of noise, and lots of movement. On the walk back to the bus, Liam took himself around to another classroom. He just needed some time to process and was just moving away from the group. It was not appropriate, I fully understand that, but that was his coping mechanism, and he needed some space.

A student said to a teacher that wasn’t familiar to him, ‘that kid’s just gone around the building’ and the teacher said, ‘it’s okay, I’ll kick his arse when he gets back’. Liam heard this and kicked the teacher’s arse before the teacher was able to kick his. The teacher then grabbed him and shook him, it was caught on CTV footage, and the principal witnessed it. Liam was again put in a situation which he shouldn’t have, where a member of staff and the professionals looking after him should have acted more appropriately.

He’s reacted again to the inappropriate actions of these grown-ups. He wasn’t suspended or expelled, they were very supportive. The school said that he should have a couple of days off, as this was a big thing so, he had a couple of days off for mental health reasons.  Then he went back for a week, and he got more teasing.  My husband and I made the call two weeks out from the end of the year to pull him out again, because: he didn’t have friends, it was leading up to graduation, and graduation plays. Why should he have to go through that process with a bunch of kids who don’t even like him, just to be part of the process? It was becoming difficult to go to school, it was not easy. That was a big call. We said, ‘we’re going to pull him out now, we’re not going to put him through having to turn up to rehearsals, end of year concerts, and graduation ceremonies, it’s not fair on him’.

This year he’s at MS1 in the Pathways Unit. I don’t know that it’s the best place for him, but we’re at a point where we’ve got no choice. I’m an advocate, and I’ve met with the minister, and I’ve told her there’s no choice. My husband thinks it’s a glorified babysitting service because he’s not learning anything academically in there.

We appreciate he needs social skills and he needs to learn that stuff, but again, they’re not meeting his needs academically.  We will ask him what he did at school, he will answer that he has done five maths sheets where everybody else in the class did two. But the maths is very basic where he  probably could be doing algebra instead. Because the rest of the kids in The Pathways aren’t near that level for their own reasons, they can’t meet his needs.

When he was expelled from PS3, he’d had a medication change. We had just been noticing for a little while, that it was not quite working as well as what it should. He had been on the same dose for three years, he’d grown, and we needed to do something. So, he changed meds, and that expulsion happened two weeks into the change which again, was not very supportive of the school.

During this last lot of school holidays, we changed medications again, which helped a little bit, but he became really obsessive with control, particularly of our youngest, Catherine. He became really quite nasty and aggressive and we thought, while other things are going well, this key point is not sustainable. If he goes to school and finds a kid that he wants to control like that, it won’t be good.  We went back to the paediatrician to examine other options.  He then had to take two days off his medications, and we started a new one the Sunday before school started, which is not ideal. Whilst we knew the timing wasn’t optimal, we were not sure what else to do. During those two days again without medication, I couldn’t believe that this was how we used to live. It was horrible, tense, aggressive, violent and loud. We hoped that we had found the right medication for him.

Liam is now on Vivance. He had gone from Ritalin to Strattera and was on Strattera for a very long time; the medication change was an increase in Strattera but that didn’t work. So, we went back to the lower dose in Strattera with a little bit of Ritalin, and then over the holidays we went on to Strattera.

He is quite happy at school now. While we think it’s a babysitting service, he’s wanting to go every day and he does have some friends. Liam said ‘Mum, I don’t want to go into mainstream ever’. They provide a safe environment which is not just out in the big wide world, and where it’s supportive and nurturing.

The Pathways Unit is not just ASD centric, so he is finding it a little bit challenging with the kids who aren’t ASD and who have behaviour problems. He called the police because they said that they weren’t going to tolerate bullying, and they did. They let a disruptive child back in the classroom, so he called the police. Of course he did!  So, that’s a little bit more difficult for him, but I think he’s feeling quite comfortable there at the moment, as he’s still wanting to go. If he was at a ‘normal’ school he would be, ‘I’m bored, I don’t like it. We’re doing this, I don’t like that’. Where even though the workload has been not at all stimulating, he hasn’t whinged about it not being a good place yet. That’s positive for us, but again, we’ve got no other choice. This is our last chance before home school.

Liam like to play those Agar.io games and those ones where there is no skill involved and just mindless movement. My husband’s an avid gamer too, so Liam’s done a bit of World of Warcraft-type, big concept games where you have to use strategy. We limit that more than the iPad and the mindless games, which is a really difficult balance. The other challenge with the electronics obsession we have in this house, is where it’s got to the point where homework is all done on the electronics. We have an electronics ban Monday to Friday, and they’re only allowed to use it on the weekend. But when there’s homework involved, it’s really difficult. He wants to go on there even though he doesn’t have homework, because Emma’s on there and he doesn’t understand why he can’t. It’s really hard to manage that.

We do have some learning programmes, Coding Academy and Prodigy, an online maths game. All my kids are quite strong at maths. So now, if one’s doing homework, you can use electronics but you have to do learning. That’s the way we sort of manage it, but it’s difficult.

Career wise, Liam is likely to sit on the couch and be a gamer his whole life. That’s his obsession. That’s probably an unhealthy obsession, in our eyes as well.  He doesn’t eat, and won’t drink while he is playing. For a very long time in those early years, that was what we did to cope as parents, and as a family. We went on holidays once to Singapore before his diagnosis, and we purposefully got a kid’s package with an Xbox in the room so that after we’d been out all day, we’d come home, he’d get on there, and everyone else could relax. Without that it would have been horrific. That’s where that’s an unhealthy obsession from our perspective, where Emma’s obsessions aren’t unhealthy.

Liam has friends. It’s funny, throughout our journey with The Gifted Association, we met quite a number of kids quite early, when he was six and seven, who were also gifted. Some have since been diagnosed ASD and some have ADHD. At PS2 he had a really great friend, Andrew, who had autism, and so talking with his mum about the boys similarities was part of the opening up the process.

Andrew was a great friend. Andrew moved away to Melbourne and was involved in a very serious car accident where he lost his mum and his sister a week after they moved. He was left a paraplegic, and is now in a wheel chair. Liam and Andrew remained friends for years and would call each other. They would get on Minecraft or Skype. Liam would ask me ‘Mum, when I grow up I want to be in a wheelchair like Andrew because he can do wheelies’. That’s the beauty of autism as well, he wasn’t nervous about his friend losing his mum and his sister, he wasn’t nervous about him being in a wheelchair or not able to walk. He didn’t really care what that meant, but a wheelie sounded pretty cool.

The friendship has sort of died down a little bit, but I know that it’s Liam’s loyalty that he has as well. They find that person and then it becomes obsessive, but it’s great that he has those friends. He does have a couple of friends that he goes to karate with.  We did Occupational Therapy (OT) very early on, which was great. The OT said, ‘you know, we’ve done as much as we can do. He’s doing quite well, we suggest something like karate because that’s then weekly’. It’s about the crossing of the hands, it’s the hand/eye co-ordination, it’s the strength, it’s the core, it’s all that stuff.

I guess the positive with the Pathways Unit is that he has met a couple of new kids this year who were probably also like him, and he can ride to and from school with them.  So, we’ve let go of it this year, he goes to and from school on his own because it is close. He’s very comfortable around like-minded peers in Pathways; he’s called the police on a kid in his class already. When I mentioned this to Autism NT, they said, ‘it’s great, he’s got that skill!’ I’m like, thanks! It’s the positive.

About Emma

Emma’s currently in grade eight. At the end of year six, she started having some major issues at school, particularly around relief teachers and the movement between classes. She was actually at the Private School (PS3) in the year six programme but it’s run very much like a middle or high school where you aren’t in the same classroom all day and you’re actually moving between classrooms.

That transition became a bit of a challenge to her, and she became quite defiant in her reaction to those situations. She was rude, disrespectful and not the Emma I knew. I spoke quite frankly with the principal and her teacher at the time, and asked, ‘do you think this in more than a developmental stage, and more ASD?’. And they both replied with a ‘yes’. Given I already had a child with autism, I did have some understanding of where I needed to go then.

So, that started us on the journey. At least I had support of the school and her teachers, because I know that as a parent, that’s half the battle as well as you can have a very different child at school than you do at home. I think that having that support of her teachers and of the principal, was a good step we towards pursuing a diagnosis.

While we were initiating her diagnosis, I actually went to the Autism NT luncheon, and I won a full OT assessment. I had used that OT organisation previously, and I thought that this might be a gentle approach to her since she was 12 at the time. So, we did an OT assessment first, and that report supported further investigations for ASD. We then had one report that we could take somewhere else so that our journey could start.

We were recommended to a psych who we went to see a few times. We saw her a few times without Emma first, because Emma works out what’s going on, and then if she doesn’t like the person she will also become really quite defiant and not get involved in the process very easily. I wanted to articulate to the professional that you need to get a snapshot of Emma without Emma knowing first. So, she did a school visit without Emma knowing who she was.

During that school visit, Emma had a relief teacher, she displayed some of her quite typical behaviour of reacting to that. After a number of other sessions the psych decided that we wouldn’t need to do the ADOS, because she didn’t feel that Emma would meet the criteria.  That was a low blow, she actually even wrote a report that Emma was ODD, and the Emma I knew, was not ODD. I understand that that’s an across the board-type behaviour. Emma is like that in situations, yes, and that’s what the psych had seen at the time, which was the behaviour that I was hoping she would see, but it just wasn’t in our favour that time.

We went back to the paediatrician, who was also seeing my son. I said ‘look, I’m not happy with this, this, this…’. I spent hours and hours writing out conversations I’d had with her, I would record situations and scenarios. I would write down everything that would provide evidence that something’s going on, that she’s not coping and that sort of thing. The paediatrician said that I needed a second opinion. She said ‘yes, I think something’s going on, but the way that diagnosis happens up here, you’ve got to have that duel support. You know, you’ve got to have two people willing to agree’. So, the paediatrician was quite supportive of that second opinion.

This was a positive experience for me after many negative ones. After a number of sessions and with all that information I had collated, Emma was diagnosed with ASD level two, not even level one. It was not surprising, but it was great that her issues had been identified so we could support her.  She also did an IQ assessment and she had quite a fluctuating profile, which then supports unspecified learning disorder, basically dyslexia, and we knew that she’d sort of had that along the way as well.  So, that unspecified learning disorder was supported, and also ADHD. All of those diagnoses came out over the next three or four months in that process with the paediatrician and psych, for the second time. That led to medicating her, because we had had success with my son.  It was just to help her cope, and it’s taken the edge off her being so erratic.  She was put on Ritalin for the ADHD, and that has definitely helped her. She is on the long-acting tablet because then she wouldn’t have to have any at school. But we also found that the routine of her going to the nurse at lunchtime was good because it helped to remind her to stay on track and the routine of it was all supportive.

This year she has continued on at PS3 which has seen a change of staff. It has been an interesting experience already, where on the fourth day of school, she had a meltdown because the students were told they were no longer allowed to carry their backpacks around. Their backpacks had to stay in their lockers; they had to take their books between classes and go back to their locker and change there.  She is immensely organised. Her whole life is in her backpack, and they ripped that out from her without any warning. She then got a teacher who she wasn’t familiar with, and was late to class because she was trying to work out what books she would need from her locker because she had no preparation for that.

There was an incident, and she became defiant and aggressive, as she does in those situations, and it wasn’t a good start to that class and that lesson. The next day we got a call from the head of middle school, saying, ‘oh, we’ve just found out today that Emma has autism’. That’s not ideal, they’re under new management but, it was like… Really?  I pointed out all the reasons why the meltdown happened, because: they took away her bag, it’s a wait, she’s really organised. Additionally she had her period for the first time, and I’d already run her through how to organise herself with that at school: you’ve got your bag with you, you can go to the toilet anytime you need to. She now didn’t have her bag with her, it was in her locker! So, that whole anxiety process caused that meltdown.

Liam was extremely difficult, violent, and aggressive, he had so many needs that in comparison she was an angel. Now in hindsight, she was a mimicker of me, she was a little mummy. She was hugely helpful, particularly when I had the other two kids. She was changing nappies at four and five, she was able to pick the kids up and I could trust her with them.  Developmentally, that’s probably not appropriate for a five or six-year old, but she was quite capable. She copied me and she knew what to do.  It did become a bit of a problem probably when she was eight to ten years of age where she wanted to continue discipling the kids or reprimand them. We had to pick her up on that. In hindsight, yes there were signs of autism. The other thing is, because of our situation with our son, we don’t have play dates here, we don’t go many places, so we didn’t get to see her in those alternative social interactions.

School is a special interest for her. The first day of the school holidays, we would have school for probably about three or four hours. We would have to sit at the table, at 8 o’clock and do reading rotations, then we would have to have fruit break. Then she would have the whole day timetabled out for everybody in the family who wanted to participate. That’s what we just did every holiday and we just took it for granted that she really like school.

They were big obsessions, but not really problematic, so it wasn’t really highlighted as too unusual.  You know, I’ve got a kid who loves school! That’s great, you do not think really anything more at the time until grade five and we’re still doing reading rotations on the holidays. We would have a full timetable, including assemblies on Friday where we have performances and certificates, and the whole works. But again, because it’s not problematic, it wasn’t a red flag at the time.

Emma has a couple of close friends, and that’s the reason why we haven’t moved her from her current school. It is also for a lack of choice really. While she hasn’t had a great start with them not understanding that she has autism, she’s very academic and she’s very organised. She wants to be a doctor, she has friends there, she knows the environment. She knows more than half the teachers already so that’s the reason why we kept her there. We also would’ve had the opportunity to have access to the Pathways Unit, but we felt that Liam needs that space on his own. So again, we couldn’t put her into that same school because we feel that he’s going to be better on his own without her being over the top of him.

Becoming a doctor has been another obsession from when she was very young. As soon as she could say, doctor, as soon as we went to a doctor, she announced that she was going to be a doctor. She has been involved in the St John Ambulance, since she was eight years old.  In January she went to Adelaide for their national camp, and to represent the Northern Territory in St John Competitions.  That caused a huge anxiety for me to have to put her in someone else’s care for eight days.

I advocated hard to get her actual leader here to go with them, because that wouldn’t have been the normal process as far as it goes. I said that she needed a carer to go with her; she needed someone familiar with her, who she can talk to if things are not going right. She’s been on school camps for two or three days, and she can hold it together reasonably well there, but again it’s part of the school rules, eight days worries me because that’s a long time for her to hold it together.

I put lots of things in place; I advocated to get her leader to go with her as her designated carer. I played the whole card that we need to be supportive for children with ASD. She did okay; she had a couple of meltdowns. I was nearly on a plane on day six, but when she came home, she was probably none the wiser that I was panicking that hard. Things around her were going well; her carer did have a bit of a hard time. But that was situational as well, not just Emma-related, and that’s where I felt the need to go, to race down there and help-out. I know that as they get older that I have to reduce that amount of support that I give them in order for them to rely on others and be supported themselves. So, that’s our next stage I think.

My struggle is passing that control and responsibility to others. That’s my inner guilt about it not being other people’s job, it’s my job as their parent. Considering our situation with schools where we have left them in other people’s care, and the stuff that goes down, it’s really hard to just know that they’re going to be okay without you stepping in.  This year I have really tried to step back a bit which is why probably, Emma’s school didn’t know she had autism until the fifth day. I wasn’t in there on that first day like I probably would have been in the past and making sure they know her diagnosis and making sure they’re letting me know what’s going on. Emma is good on public transport, so she’s bussed to and from school, which is great because I’ve got three different school drop-offs and pick-ups.

She doesn’t have an issue with that or with homework. This morning she actually said, ‘mum, can you get hold of them and tell them I need more homework?’.  Again, the special interest, when she’s on the bus or at home, that’s what she’s doing. She’s had periods last year where she was on a behaviour management plan to try and help target some of those defiant behaviours.  The school said that they usually offer a reward once the student displays a certain level of good behaviour. When asked what would be a suitable reward, I said that I think she would like a maths worksheet because that’s another special interest. They said that they had never had that before and asked if she was going to do those for homework. I’m like, ‘ah no, I think she might just like collecting them for her special folder’. She collects her math worksheets. ‘Mum I had a good day, I got another maths worksheet’. Again, it’s not problematic, the kid just wants more worksheets. 

Sara’s gone through a few phases, she originally wanted to be a brain doctor on dead people, because she doesn’t want to hurt people who are alive but she wants to look at their brains to find out what’s going on in there. Whilst she has been involved in St Johns, she has very keen on becoming a paramedic.  She wants to be the one in charge. She’s not keen on being a nurse as she doesn’t think they do anything. She wants to be the one in there making the decisions about what’s required in situations.

Even when she was diagnosed with dyslexia, I have never told her she couldn’t be a doctor because you have got to keep that dream alive for her.  Her current school promotes excellence. I know she’s going to need that if she wants to be a doctor, and I know that she needs support in order to achieve that. Other kids will go to public schools, and become doctors, because they have personal drive. Emma needs other stuff around her, but I have no doubt that if she got the right support and systems, she could be successful.

Self-Care

For a very long time, until I started working at PS3, I was a stay-at-home-mum and I dealt with all of the kids issues on my own. David was the worker and I was the mum, and I dealt with it all. When I started working, he had to take some slack, like if Liam needed picking up, if he was off work, he had to come. Prior to that, even if we were both home, I would go. It wasn’t divvied up, it was me handling it all.

It wasn’t until the last few years that David’s really realised the impact of trying to manage the household. That’s been amazing for me too, because I’ve been able to let go and share that load, and we’ve been able to make decisions together. Like when Liam was expelled, it wasn’t me deciding where he’d go. We made that decision together, where in the past that would have been my decision and he’d go with whatever I thought was the best idea.

We don’t have any family here but we have a really amazing babysitter who were so fortunate to have found as soon as we moved here seven years ago.  She grew up with our kids from a very age, so we trust her. But it’s really hard to trust people with your kids when you know that they have difficult needs. It’s the same for respite care, we’ve been offered respite but I can’t just send Liam off, that’s not sending a good message to him. I know how hard it’s going to be on them, it’s not going to be a fun experience, so why go through that.  So, we have this awesome babysitter, who we pay way more than what we need to, but we need her to keep coming back, because we trust her, and the kids trust her and they like her coming. 

Siblings

I think the younger kids are affected by their older sibling’s behaviour, and that’s where it’s hard to know whether it’s their behaviour, a learnt behaviour or whether it’s a coping mechanism. Alexander, my boy who’s eight, has some absolute sensory needs and is a sensory seeker. He will have a meltdown and crawl under our crash pillows, or hide in the cupboard.  I totally know now that’s not fully normal, but given the situation with our family, I respect that he’s doing what he needs to do to meet his needs and in our family, that’s okay.  But it hasn’t really reached a point where he’s not really coping outside of the house. He’s quite social, he’s quite loyal to his friends, and he’s a white food eater.   There are red flags there for me, but again, when I’m having discussions with the likes of Autism NT they ask, ‘is he coping? Do you need more support? Is it to a point where he can function?’.  If he’s functioning okay and within a reasonable range, then there’s no need to add in extra support.

For us it’s more a support-base need to pursue a diagnose rather than not knowing what’s going on. We are very structured, though this year we’ve been a little less structured. I’ve got a little whiteboard, and we’ve listed the days of the week and who has what when. We have a: timetable on breakfast, we’re going to have cereal and toast today etc. Heaven forbid if anybody deviates from the plan, but that’s how our life runs now. 

That’s again supportive of Alexander’s and Catherine’s needs. I have always said that Catherine, my youngest, is the most like Liam, not with her aggression and violence, but just the way she is. She’s very solitary and will work on her own.  She’s obsessed with rocks and has a rock collection. She names them, lines them up, packs them up and then they go back into her room.  She makes a bed for them and then the rocks go in the bed.  Which are all again things that probably aren’t quite typical, but is okay within our family.

Disclosing the Diagnosis

I’m very open with the children about their diagnosis. For a few years, Liam did a PowerPoint presentation for his class on: these are things that I like, this is something that annoys me, and I have ADHD and autism, and there are things that I can’t control. For example, camera flashes is one thing that he just cannot tolerate. I’ve got so many family photos, where he’s standing with a beautiful smile with his eyes closed.

PS3 was very supportive of his presentation and that went really quite well for a few years. PS4 decided not to show it as they said that they had some kids in this class who might target him because of that.  We were OK for them to make that call. But it’s a great PowerPoint for him to share because it helps him know what works for him and what doesn’t, and that’s an important message for him as well.

We were happy with the decision that we took to tell the kids about their diagnosis.  When Emma got her diagnosis, we were already very open about Liam’s autism. As a family we were able to discuss what was occurring when he was having a meltdown: it was because he has autism, and he thinks like this, and this, and this, and that’s why this situation is hard for him. So, we were already having those type of discussions. When Emma got the diagnosis it was a bit  for her like ‘Oh, I’ve got it too!’.

We were then able to point out to them as well that there are differences. It does not present the same for both of them. Emma don’t have the same challenges as Liam has; and he didn’t have the same challenges as Emma. We explained that it’s quite different for girls too and that’s why Emma’s 12, and we’ve only just worked out that she has autism.

It was quite funny through the diagnosis process with Emma, because we were quite open with her that we were going to go and talk to the senior psychologist at the clinical psychology unit because we thought she may have autism. I would tell Emma a story that I was thinking of sharing with the psychologist and then ask Emma if I had told it right and she would let me know. Throughout that diagnosis process Emma was open and not defensive.  Emma has shared the diagnosis with her friends, we said it was up to her who she told. On a side note, yesterday she came home diagnosing one of her friends and we discussed how to manage that.

Therapies

Beside occupational therapy, we have done a bit of psychology.  But because the kids are smart, they know what to say and then we get to the point where the psych goes, ‘we’re really good here now. They know exactly what to do, off you go’. Then the next thing happens and they meltdown, and they can’t use their tools it in the moment. They can’t do it in the moment, not because they don’t have the skills, it’s because they just can’t. I suppose then for me, you need that support at that time, not at the psychologists.

We’re at a point with Emma and Liam where they both want to go back to a psychologist.  It’s a maturity thing, and they are going to have to want to work on themselves. It’s not like when they’re little and you take them to a psychologist, and where the psych can work with them without them even knowing. Once they’re of the age that my kids are at, they’re too smart. They’re either going to go when they’re fully defiant and not want to do anything, which is then a waste of everybody’s time and money, or they open up to them. That’s the stage of where we are at with particularly with Liam, he’s got to reach up to that next maturity level. Emma, I think will hopefully hit that a bit sooner.

Extended family members with autism

David’s cousin and his wife who live in Darwin, their eldest, who’s nine, was also diagnosed with autism.  He is quite high-functioning like Liam and has similar interests. So, I’ve had my cousin-in-law for support as well, who also brings a family perspective. In my personal experience, I believe and feel, that there is a hereditary component. I also know from my experience that with giftedness, there is a hereditary component as well.

My brother has a son who’s ten, and he is probably very likely autistic as well. It’s hard to say if he’s gifted. He’s not gifted intellectually, as in academically, but has other amazing abilities. He’s a fisherman and he’s being throwing a cast-net since he was four, so quite clearly not typical.  He’s living in a remote area, so he doesn’t have access to any supports really.

My understanding of both ASD and giftedness, makes me think that all of those computer nerds and geeks are likely autistic and gifted. This is where another point of my story, it is called being twice exceptional when you have a gift and you have a deficit, and that can be portrayed in many ways. I guess that’s where my journey as well with my kids can be a little different to others, because they are so high-functioning, that their deficits get over-looked, or their gifts get over-looked and you have to advocate for both.

I know that my family’s quite bright. While my husband and I were a high school drop-outs, the things that we’ve achieved is not quite typical.  I would self-diagnose myself as gifted and with ADHD, as well as probably borderline ASD. 

Hopes for the future

I have no doubt Emma will live independently, and she will function in society quite well. I’m sure she will have a job in the medical field somewhere. I think that as she is a mama-bear, she can do washing, dishes, all of those household skills. She doesn’t think about not doing chores really because again, she will mimic me.

I have some more concerns about Liam’s future, but I’m learning to let go. My goal for him would be to live independently as well. I am at a point where academically I know he can probably do anything he can set his mind to, he’s just got to find something to set his mind to and I can’t make him do that.

I am scared that we will be those parents that have our kids living with us forever and I don’t want that for us, and I don’t want that for them. So my goal for Liam is for him to be able to live independently. I don’t really have a plan on how to mitigate that happening.  My husband and I both moved out when we were 17.  I guess that we are able to let our kids know that that’s what we did at that age.  Even my youngest, Catherine, says to me, ‘mum, I’m going to live with you forever’. I am like, ‘no you’re not. When you’re 18, you’re going to leave’.   My husband goes, ‘that’s really harsh, she’s seven!’ but I don’t want her to think that she is going to live with me forever! I want her to think that she can go out there and do what she wants to do when she can. I think that’s the message that we want to give to our kids, that we will give them is that they will and they can. It’s not that you can’t, and you won’t. And if you want to, that’s okay, but you don’t have to.

I think that as we move through those next five years or so, particularly with Emma and Liam, it’s going to be not an expectation or be a given that they will be here. Because that way it would force them into that mentality that they can do it. Whether that’s right or wrong, who knows? We’ll see in the next few years, but you know, the reality is Liam probably will need some support. He’s the unorganised one. He’s not able to get off his electronics, brush his teeth, or all of those things. So, there’s a lot of work to do there, where Emma, has those skills, because that’s what she’s developed over time.

Top Tips

I think my big tip is to follow your gut. If your gut is telling you that there’s something more, follow it. Keep following it. Even if you need to consult three, four, five professionals, keep following it. Switch off to the people who are just telling you that you are just hunting a diagnosis. You are hunting support for your child which they deserve, and if you’re not getting it then you need to keep looking.

I probably did feel some judgement when seeking a diagnosis. I did have some support from people who said that, ‘you’ve got to do what’s right for you’.  It’s funny, the people who were encouraging me were people in a similar situation and who were then understanding of my situation.  Where the other people looking in were the ones who were then judging me, because they didn’t understand, and rightly so as they’re not in the same position. I think that is also important to remember.

You need to find support from people who are following a similar journey, and yes, you might follow a journey with someone where they do not get a diagnosis. Like one of my dear friends, her son didn’t get a diagnosis with autism, but he got the ADHD one. Still in the back of her mind sometimes she wonders if it could it be a bit more. But, he’s in a position where he’s functioning quite well, he’s not needing any more extra support than what they’ve received; there’s no need to seek out that diagnosis further.  Where if you’re still needing support, you need to keep hunting it down, and it will come. You’ve just got to keep going.

I think my next tip is to be picky and choosy about your professionals, but I know that it’s probably not appropriate all the time. You need to be picky and choosy to a point where if things aren’t going right, or if you’re not feeling like you’re getting the support that you need, then leave that professional relationship and find another. While it’s also exhausting giving your story over and over again, keep doing it until you find the right fit. Document everything because even if it’s not ASD and you get to the end and you’re happy with whatever support you’re getting because of that journey, then that’s the positive.

I think the other thing is that you need to be blatantly honest with the professionals that you are speaking with too. If you don’t give them the exact picture that you have then they cannot diagnose anything. You can’t just go in and tell them what you think that they want to hear, rather than what you are actually experiencing because you think that you need to say that in order to get support, because then that’s not going to be the right sort of support.  You just have to be blatantly honest with your situation. My situation was that I wanted to kill my kid. I didn’t know how on earth I was going to keep living. How we were all going to stay in one house without something changing? It was pretty bad. I’m open about feeling like that because it was not okay, and if I wasn’t open about it and I didn’t tell people, if I just made out we were okay, we would still be living like that.

A couple of resources that I found useful included:

What I would want the education system to know

I’m an advocate already in the education system, so I think it’s important that you tell the system and the people who create the system, the problems. When you’re advocating, you just need to tell them like it is.

Even in the last six months, I’ve been on to the education minister and I’ve been to the CEO of the Education Department. I’m not doing it to fix Liam’s situation, I’m doing it to help the next kid’s situation. I know that telling my story might not help Liam, he’ll probably go through the whole system and still have more situations like we’ve already had. But if we can make change so that kids in the future aren’t in the same situation, then it’s a win in my eyes. I think when you’re going for advocacy, you’ve just got to tell it like it is.

I completely respect that with the negative comments that were said to my son, some other kids may have just let it wash over their heads, or not even registered that it was inappropriate or not correct. Teachers think, ‘oh well, the kid wouldn’t have reacted to that, I didn’t think they would’. That’s okay, but they do react and that’s what you’ve got to be mindful of.  While I can’t change that one teacher’s previous actions that teacher now might think twice about what they say. It didn’t make Liam’s situation better that I’ve told someone, but it’s made the next kid’s situation better.

What I would want primary health care providers to know

I think primary health care providers are in difficult situations where I’m not sure they are equipped to diagnose ASD and I feel that often they won’t because they’re not confident.

That’s where I think a lot of those people who move through the system, failing to get a diagnosis are probably the more borderline or non-textbook cases, and the health care providers are not comfortable to diagnose that. Because if it’s a textbook case, that’s easy for the professional to go, oh yes, that looks like autism. We can diagnose that, we can help, we can support. Great, you’re on your way.  And you know that some people have that experience, they just move through the diagnosis really quickly because it’s quite textbook.  The professionals aren’t as prepared to diagnose those non-textbook cases, even though they should be.

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