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Arnie’s story

About Keira

I have a 12 year old daughter on the spectrum named Keira. She was diagnosed with high-functioning Asperger's. Keira has a half-sister (aged under two years) who does not live with us. I have no idea as yet whether her sister is on the spectrum. Keira is highly intelligent. She's quite matter-of-fact, kind of black and white in things, and quite literal. I think this is perhaps a blur of being a teenager as well as perhaps her Asperger's. She can be a little abrupt and she really does like her own space and quiet time.

Keira does have heightened sensitivities and to be fair, she's often barely okay. She's learnt to cope, but I think, compared to the next person, it does wear her down. Her tolerance levels often get pushed. I guess when she's run out of tolerance she can be quite abrupt. Her mode of operation is very innocent and often misunderstood.  She comes across as being quite blunt or direct when she does communicate.

Keira’s interests sort of fluctuate. I don't know if this is common in other kids on the spectrum, but she can get quite obsessed about one or two topics, and she can get very excited about it, it’s all she'll want and she will consume herself in it. Often that can be quite a good thing, because she can get really, really good at something – for example, video editing. She's made some brilliant videos. From a misunderstood point of view, she can be quite flippant in regards to it as that she'll make it, it's brilliant, and then the next day it's deleted, it's gone.

She has fluctuated amongst lots of topics. I like gaming, so she's kind of into computer games, and then it fluctuates again. I think that's fairly normal, though, from your favourite to the next favourite. Sometimes there's a revival of an old classic. But she likes to draw. Drawing is actually one of her self-regulating methods. She's extremely good at it. She's got an amazing ability for left brain, right brain things. She's actually got some beautiful talents that are quite natural.

She likes to draw, and she likes YouTube. I presume she learns the world through YouTube. Whether that's good or bad, I don't know, but that is just part of her life right now, because she doesn't socialise very much. I think that has been a combination of us moving to Darwin and I've kind of withdrawn from society a bit, as well, to be quite fair, because I've got my own challenges and issues.  It's hard for me to connect to the parenting and her school community, which therefore relates to her not having me opening the doors for play dates. She doesn't like it being called play dates, it's called catch-ups now.

I do attempt, although it's significantly less now, to organise the catch-ups that she used to have with people. But when asked, she really does not want to do that and that could be various reasons and various speculations, but at the end of the day she really just enjoys her own time. Often it's just her seeking sanctuary, it's her way to recharge from the emotional and mental energy that it takes to blend in as a girl. And I do make that difference, she's a girl, not a boy, on the spectrum. I think she works particularly hard to blend in. 

There are always a bunch of variables that contribute to a lack of social activity including: a meltdown or exhaustion and withdrawal at the end of the day, or just a general withdrawal.  Certainly, a large contributor would be her sensory sensitivities combined with just learned behaviour. I guess, over the years if you keep touching the cookie jar and you keep getting slapped on your hands, you eventually stop. You probably will never stop trying to attempt it, but you would just attempt less. It's a bit of programming, I guess, over time, based on her learnings. I also just genuinely feel she's exhausted mentally and emotionally, and she just does that to cope and self-regulate. So, it's probably a combination of all those.

Diagnosis

Keira was diagnosed late, which is another reason why I'm an advocate for autism awareness, specifically around girls and their diagnosis. They're often misunderstood because they fly under the radar. Her late diagnosis was also a combination of my lack of awareness of autism.  She wasn't diagnosed until she was ten and she's now 12, so I'm fairly new to everything and I'm still a student of these topics. I believe she's worked so hard to blend in and to fly under the radar, but she presents ultimately differently to the next child.  I do believe there is a difference in diagnosis between the genders. It just took us so long to get diagnosed, though I wasn't pushing for a diagnosis, I was just pushing for understanding.

She was about nine when the school came to me. I'd briefly heard about Asperger's. I'd heard a little bit about autism, unrelated to our family, unrelated to Keira. It took us about a year and a half to get a diagnosis.  One of her teachers came to me, saying she gets all her maths answers correctly, but she's constantly being difficult and I'm like ‘I'm really sorry, I know my child doesn’t mean to be difficult’. I used to spend a lot of energy, not protecting her, but trying to help people to understand and set expectations, so it was really great to get a diagnosis.

The teacher mentioned that I should go see a psychologist, or start to investigate Asperger's. The teacher said that she's picking up on some autism traits and then after speaking with another teacher from the year before, it felt worthy to investigate it, so we did.  Keira was a bit more agreeable back then with all this stuff and she just went along with it. But I can imagine, if we tried to do it now, she would completely flat out refuse, but she was actually okay. We went to the doctors and he spoke about the possibility of Autism. We got some referrals and then the journey began. Our first psychologist was in Melbourne.

The process wasn’t completely horrible but it was just drawn out and confusing. One psychologist would say one thing, another eventually would say something else. No one was really clear. I kind of knew that, because I work in professional services, and I just know that humans with all their good intent are confusing and are not made equal. Some care more, some care less. Some have different education, experiences and competency levels. All those play a part. And the long story short is that the journey was kind of confusing and kind of contradictory.

One psychologist didn't think Keira had autism. That process wasn’t worth it, because it's a really long, drawn out one. It's quite painful and quite draining for both parent and child. Another psychologist said ‘yes, look, I think there might be something worth exploring here’. So we started exploring. It got confusing with further opinions, so I found it very a difficult process.

I don't want to keep banging on about this, but I do still just genuinely believe the process is hard because some of the tools and methods that are used. Some of these tools and methods are geared perhaps more towards males than females. They were looking for certain things, and when Keira didn't present some of those things, it's very easy to just close the topic. The diagnosis came with great expense, but we eventually got there. Looking back for me at a personal level, the one thing that would have been quite powerful for me is knowing that girls present differently to boys. With that in mind, it may have influenced my direction and crusade for answers, and pushing back when I was given a particular answer, or push back when I was told not to go further with this, or told to go down this path. Just being a bit more informed about that very topic may have smoothed the process, because we did go through about a year and a half of this stuff.

Let's be fair, it's draining all round. I'm a single dad, a full-time, corporate employee, full-time dad, mum and all the above. For me to take time off work in Melbourne, with the traffic and distances and different psychologists, that behind the scenes stuff, it’s actually quite draining and very hard to juggle. We all get that as parents with kids with special needs, because it's out of the ordinary, where we've got to commit more time and resources.

I had picked up all Keira’s traits before I knew anything about Asperger's. Ultimately the spectrum is something that humans have created, as a way of putting some context to some of our lovely children. However, ultimately, it' a human-made label/definition of a type. For me, that's just the way she behaved. She was very literal. She was matter-of-fact. Nothing's changed from pre-diagnosis to post-diagnosis. She is still the same child, still presenting the same things, I'm just armed with more information.

What’s changed since the diagnosis?

The way I approach my methods of parenting has changed. I think I'm more forgiving with the way I approach being a parent. Another positive is it gives me a basis from where to set expectations with people in her circle, her teachers or whatever, because it's very hard to go to a teacher, for example, and say ‘look, she just behaves this way, just deal with it, just work with her, just learn’. But when you say she's got a diagnosis, for better or for worse, they kind of take a bit more notice. On the flipside, what hasn't been so great with having a diagnosis it that it brings a label. People who quite genuinely haven't made the effort to try to understand what the spectrum is and what Asperger's is, often may prejudge and treat it in an awkward way, and that's just unnecessary. Some will actually hear the words, still get upset with her, and still misunderstand her the same old ways, because they just don't understand it.

She actually doesn't have any malice. She doesn't mean any harm. She means what she says and what she thinks, quite literally. The one aspect that has emerged recently, that is not so good, is now my daughter is sadly caught in that trap of being a teenager.  She is very sensitive about wanting to blend in and wanting to feel a sense of belonging. She very much feels and sees this label in a very negative context. That's very hard for me to manage.  What is also difficult is she's now trying to convince me that she doesn't have Asperger's. I'm not sure, as a parent, how to confront and deal with that concept, because she really wants to convince me she doesn't. There are probably many motives for that. One of them would be is if she could convince me that she doesn't have it, I'll stop labelling her and that means everyone will stop labelling her, and this awareness crusade of advocacy that I'm on, she can feel comfortable, because people at school, and her friends, would know it's not associated with her anymore. So, I feel kind of bad for her. 

I just see Keira as my daughter. Her diagnosis just happens to give me a little bit more definition and her character is contextualised a little bit, but that is actually a part of who she is, but I constantly just think of her as Keira not as her diagnosis.

Therapies

I don't know what the true definition of therapy is. I think I've taken her to the Secret Agents Society training. I have taken her to the odd social skills course. She's been really good at all of them. The most recent one we took was at the university, which is a parent-child one for a six-week period. Post-that, we haven't done anything else. She was quite conforming, but I could see we were reaching the limits of where she'd really want to agree to keep going. She would say ‘I don't think I need it, this is the same old stuff every time I go’.

She may not be perfect at articulating herself, but if I were to read into it, she's saying ‘Dad, I know all this stuff, and I know the way that society may want me to act but I want you to know that I'm aware of it, but I just still act the way that I want to act’. Now, that is admirable in so many ways, however, there's a conflict there, because that may not work in her favour because we live in a society where we're socially programmed culturally in politeness and political correctness. What gets her into trouble and constant misunderstanding is that she chooses not to engage it.  Everyone will have their opinion on whether that's enough or not enough. Ultimately, she is the one, for lack of a better word, that suffers the consequences.

I've never gone down the Occupational Therapy route. I still don't know a great deal about it. The Autism NT staff mentioned that to me once or twice. I never got to that next stage. There are a few things where I'm quite fastidious and I'm quite organised, and I pursue things but then, for some reason, there are things that slip off the radar and never quite get there. I might start, and then I never get there, because it was just too hard. The two main things that probably ultimately stopped me and made it not high of a priority is that I don't understand enough about it and what it will mean to me and my child or I may have attempted but it just got too hard such as when appointments couldn't be booked at the time.

The main resources that have been helpful to me have been the Autism NT staff. When I first arrived in Darwin, I looked up Autism NT.  They gave me information and practical advice. I wouldn't have known about so many things.  The bottom line is, they opened a lot of help and support and knowledge into my world. They told me about different things, like the carer's concession and about the different groups that were available for families and parents. It was literally a hub of advice and what resources I had at my disposal.

Self-care

Looking after you as a carer is a very important topic and one where I think I will constantly be working hard, because I'm a big believer of me-time. I'm a big believer of finding my own version of happiness. The only way to strive for that happiness is to give myself my own time to understand what things I do enjoy, as little or as big as they might be. I often wind down in the evening by playing computer games. That's been one of my passions since I was a little child. Some would argue that I'm still a little child. I've got a lot of interests, because I'm just that kind of driven kind of person.  Computer games fulfil my immediate, instant gratification side. I also pursue the big picture, the big sense of purpose, the wanting to make a footprint of goodness on the world, like my trek to Mount Kilimanjaro and my causes such as the Soul Parent.

School

Throughout her younger years, I would actually argue Keira enjoyed school, probably up until the point where she was starting to get misunderstood on a constant basis. I think ultimately, she's kind of a person that knows, this is my life and it must be done, so I'll just go. It is irrelevant whether I enjoy it or I don't.

I think the best way to describe going to school is - it just is. I would say that she probably did enjoy school, but now she's in year seven at middle school she doesn't enjoy it as much. She tolerates it. Being a teenager, she is quite happy to not be at school. She's quite happy to be on school holidays. She's quite happy to be at home and do her YouTube and have her own fun. Like most kids she says ‘I'm sorry, I've done this for a chunk of years, and can we stop this now? I don't really want to go to school and do assignments and learn about topics that aren't really a burning desire of mine’. I think we can all relate. I don't think it's an Aspie thing.

The school is supposed to give her allowances, interventions and support but to be fair, because she was only diagnosed when she was ten, this is only her second year where she has had a diagnosis at the beginning of term one. We were still in Melbourne in term one last year so she's only really had three terms of year six where it's been formalised and she access to a special education teacher, a place she could go to self-regulate and all that stuff.

She’s already learned a lot of her own coping mechanisms anyway. The school is supposed to provide for that support but I take matters into my own hands and try to build relationships at the ground level, but not with the assistant principal.  I have an issue with the lack of accountability around the funding and what they are doing with the money. There is a lack of accountability around just taking a general interest and making a difference with the special need kids.

I've tried to build relationships with individual teachers, which has probably gone a bit cold lately as I've not had that proactive time to keep that level of attention with them but they are aware of her. Her teachers are aware of what her diagnosis is. I've even created a one-page reference sheet for Keira, a cheat sheet on what are her favourite things to do, what's her favourite colour, what are her typical triggers, what are her sensory things, her typical responses etc. Now, I don't know about you, but if I walked into a job and someone gave me a cheat sheet about some of my customers, I'd love that.

She has an education plan that’s been carried on from primary school. The middle school assistant principal knows about it, but I can guarantee you there's been no report. There's been no follow-up. It's not even used. I've haven’t engaged the Department of Education autism advisors so I shouldn't go on about it. They were pretty nice, when I met with them. But again, as a parent, if you were to ask me, deep down, what is my gut feel of whether the education plan is gaining traction, and if it actually being exercised and paired with the funding, and done with authenticity, I would have to say a flat no.                                           

In primary school it helps with only having one teacher and one special education teacher, and the school was a small place. There is the massive difference with middle school. The difference is that I nominated that primary school special education teacher for the teacher appreciation night, versus what I have now at the middle school. It gives a sense that there literally is a big gap or a big rift there, in terms of the engagement levels and the transparency, and just evidence of action. I feel that it's tough enough for Keira and any other special needs children to start change schools, but it's also now amplified with the fact it's new, it's different, but then they're not even getting support.

I'm not aware of anyone touching base with these kids to see if they even know that there's a special place they can go to if they are stressed, or have they considered, at the most basic level how they like to self-regulate and how to cater for that.  Right now, Keira's only way to self-regulate – and it's been mentioned to me several times – is she's often at recess and lunch, all by herself. Most of the time, I would presume it's by choice. I would worry if that was genuinely called exclusion but she chooses to just time-out, because it's pretty intense – five, six subjects throughout the day. It just requires a lot of mental and emotional energy.

Friends

Keira having friends has been a bit of a natural parenting concern for me throughout this whole entire middle school year. I've touched base with one of the teachers regarding this matter; I trust this teacher quite a lot and feel that her insight is better than mine. Keira will never communicate friendship issues with me. She's not very good at it. In fact, often she'll just shut me out from that conversation. I believe she has friends. I just also believe she chooses when she wants to actually spend time with them and when she doesn’t. I admire her for that and for her to follow through with withdrawal when she needs to. I just don't quite know how that is genuinely perceived, managed, or misunderstood by her friends. Let's face it; those teenage years are very tricky to navigate around social relationships. There could just be little innocent slights because she's mentioned to me a couple of times ‘some kids just think I'm really rude, and they yell at me and tell me off, and they just ignore me’. She's aware of that but she's doing what she feels is right by her.

Current level of functioning

I don't know how I feel about Keira's current level of functioning. As a parent who wants, obviously, the best of their child, I feel that she could use more assistance with helping her build resilience, self-esteem social functioning, and social skills. They're probably the major things that I think, if we nail and get it right with Keira, and then she can set herself up for success. I just feel like she's got that gap where she is lagging behind her peers.

I haven't thought about her future as much as I think maybe I should. Again, this is just my perception that I should have thought about it more, but I'm usually trying to just deal with the now. My fear is that she may not reach her full potential, because she is misunderstood.  My number two fear is that she will be unable to cope and manage on her own in what is effectively a nasty adult world. The adult world is based on social skills; it's not so much based on your academic or your technical skills. When you're growing up as a kid, your parent tends to take care of all those other little things, and you're effectively shielded from that stuff, so my greatest fear is her really integrating into the adult world.

I'm trying really hard lately to get to Keira to try and build a few skills. She is unloading the dishwasher herself and helping me fold the clothes etc. It's clear she's got the skills to do all that. The one thing she doesn't seem to have, and I don't know if it's more of a teenage thing or it's her personality wrapped around the Asperger's thing, are the things that are very obvious. I will have to remind her 5 times over 3 days to do a task. When she tells me she'll do it, I believe that she's telling the truth so I think that it's a little bit of an executive functioning deficit.

Support systems

I think my extended family, acknowledge Keira’s diagnosis and they're aware, but ultimately, my brothers virtually have nothing to do with me. Not in a mean, nasty way, but because maybe it's just too hard for them, so they keep their distance but they still communicate with me on the odd occasion.  Let's say most of the family have distanced themselves away from me and my child, which in a funny kind of way has created something different in me and made me the person I am today.  It has made me more positive, more ultra positive, rather than destructive or negative because it actually helps me stay resilient by being positive. It's made me work harder for my child, and therefore I'm doing autism advocacy.

Mum and Dad, they are awesome, but putting it into context, they used to visit us two or three times a year in Melbourne, so they'd be there a couple of weeks at a time. They can only do so much for me and Keira in those special times, but since we've been up for about a year, they've had literally the baptism of fire and a lot of hardships. My daughter fell out with them. They're in Darwin and we've moved here to be closer to them. But I completely underestimated even with their good intentions the lack of understanding.  My parents held fast in terms of trying to be good people and were never be mean or yell etc. but my daughter was melting down. I completely underestimated the unpreparedness for the integration of myself, my parents, and ultimately Keira, in moving to a new city and school. I don’t really have any friends. Mum and dad were supposed to be our helpers, they help, but they don't help as much as I would honestly think would be the typical thing. So, long story short – I'm not as close to my family, as I once was.

I didn't even have the school parent social support, because we lived a few suburbs away from Keira's primary school in Melbourne. I therefore didn't have that sense of community with the mothers that would go pick up their kids. I'd be running in, picking up my daughter, at the death, at 6:00 PM, from childcare, so I never got to interact with the mums. I never got to learn from them. There's a lot of isolation. One thing I'd like to sum up as a male parent, and again, the fact that I am a male, mothers don't actually realise I'm a genuinely deeply caring, devoted parent of a special needs child. The one word I would describe my life is lonely. And I'm not talking lonely from a more romantic sense. I'm talking lonely in a really deep, meaningful sense, because I really don't know anyone who lives with all of the big, same variables as I do. When Keira was growing up as a little child and I was a single dad, I didn't have any traction through the mums, I didn't grow with them, because they would interact and share advice on how to parent. I didn't learn any of that. I am who I am today not by choice, but because I had to. I never really build any strong sense of friendships or relationships with them that would contribute to perhaps sharing less with me.

I also feel that, because I was male, there was a natural stigma attached to that and how they would treat me.  The other dads in the playground would be more hands-off. The men wouldn't share the kind of topics that mums would talk about, the child topics that were relevant to me. I wasn’t interested in the small talk stuff that you have with the dads. I was geographically displaced, and as much as having gender challenges to make connections.

Hopes and dreams for the future

All I want is for her to feel a sense of belonging, and grow up into this world self-sufficient and happy. And I believe in the concept that I need to also work on me. For me to be happy as a happy parent means a child that has hope and a genuine reality of being everything that she or he can be. The bottom line is I just want Keira to grow up to be the potential that she has, and be happy. Now, happy is not my version. It's her version of happy. I'm a big believer of everyone has their different version and we should never shove anything down someone's throat or manipulate their mind to what you think is happiness.

What I like most about Keira is that she's my daughter. She's genuine to herself. She's extremely smart. I genuinely believe that she doesn't have a bad bone in her body. She's just actually genuinely a good person in her own right.

Top tips for families who are just starting the diagnosis process

Connect with Autism NT and find all of the resources and find out what it would mean to you are your family.  That gives you actions, and I think actions is where you learn, and actions is where you get stuff done and where you actually can change your life and your child's life. Build as much knowledge as you can and that comes in various forms, but probably the biggest one I would suggest is throw yourself into a parents' group. That's one thing I look, now, in hindsight, is where I learned so many things.  I learnt mostly the hard way, through just sheer willpower, because I wasn't around the circles I needed to be around.

If you have any inkling that your child might be on the spectrum, as much as I think you still need to see the practitioners, like, the psychologists and the occupational therapists, your best resource, aside from Autism NT, to provide you with a starting point in the right directions, is a parents' group. As brutal as it might sound, if it means you have to withdraw from your current circles because they're not helping you to move forward, what's more important to you? Prioritise. If you need to build a better place or a better environment for your family, reset, refocus restart again with your circles.

Continue to no matter what, to love your child. Don't see them as their label or advocate the whole label thing. Just see it as you’re now learning a little bit more around this topic to help set expectations of yourself and their community. Don't see it as a burden, because the moment you see it as a burden, it does shape your thinking, it shapes your dynamic, and it rubs off on everyone. Don’t create a sense of burden mentality. See this as a really powerful expectation management tool that will now help shape your life, and your child's life, and your own life, and the circle that your little family now belongs to.

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