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Cassie’s story

I am a 30-year-old woman who has been diagnosed as being on the Autism spectrum.  I was diagnosed two years ago, with quite a trail of destruction left behind me. When I was younger, I had a diagnosis of something but they weren't quite sure what.  I had a substantial amount of assistance when I was young but they weren't quite sure why.  My diagnosis was quite a journey. I always had a feeling that what I was going through was a little bit weird, and not quite what everyone else was experiencing but it took a long time for them to be able to put a label that fit onto it. It was a huge relief when I finally got that diagnosis.

My life change after I received the diagnosis because I think there was a lot more self-acceptance. I didn't feel quite so much like I had to be a particular way. My failures, or perceived failures fit quite nicely into the realm of what the deficits were found to be on the Autism diagnosis and I got quite a good report come out of it that really helped me understand why I’m the way I am, and not to blame myself anymore.

My family

I am not aware of other blood family members on the spectrum but my stepson is autistic. However, I think some of the women in my family do show a cast of traits that would be consistent with autism.

I live with my parents, my husband, two dogs, two rabbits, and a cat.  I have a brother and a sister but they don't live with me.  When my family were told of my diagnosis, they did not react well initially. I think they thought of it as something of a failure on their behalf. I think for them personally, it was difficult to accept that someone is, I hate to use the term, but as high functioning as me, could have something wrong with them.  I hate to use these terms, but I don't know what else to say. I think that even though they knew that I was quite an odd child, and that I had a lot of difficulty as a child, I don't think that they understood the extent of it. They just thought I was a difficult child so it would take a lot of reprogramming and a lot of self-reflection for them to come to peace with this kind of thing. I don't think they have it in them.  My parents associate autism with someone who's low functioning and to this day, even though I try to educate them about it all, I don't think they have a very good idea of what autism is.  It used to be challenging but I don't think it is anymore. When I was growing up, autism was something that only happened to boys and they're still of that mind-set and there's a lot of people who still are of that mind-set.

Early experiences

I think that I went under the radar of the diagnosis for so long because I am a female.  When I was growing up, even before I was 18, I was told that I had borderline personality disorder and that's why I had so much trouble in life. But it never fit, and it was never something that I could identify with because I don't have any of the cluster of personality traits that would make that a good fit. I think the only reason it was a good fit was because I was female, and because I was struggling. If I was a male, I think I would have got an autism diagnosis, rather than borderline personality diagnosis at a younger age.

I was basically non-verbal until I was six. I would speak in weird words, grunts, and stuff, but not actual language. I had a lot of help from a speech therapist to get me to talk but once they got me started, I never stopped. When I was in primary school, I didn't really have many friends. I didn't play well with others. I didn't play nice with others. I couldn't understand games, and stuff. I would often just not be able to comprehend what was going on.  I was very into order, and things like litter in the playground really bugged me, so I would pick up rubbish in my lunchtime, which doesn't make you a very popular child when you're six. I was a little policeman for litterers. I did a lot of weird things that end up with me being bullied quite badly in primary school.

In high school, I just really struggled with boys, with the idea of having a boyfriend. There was this thing, I don't know if this still happens, but If someone wanted to be your boyfriend, they'd come up to you, and they'd be like, ‘oh will you go out with me?’ and if you said yes, then you were a couple and me being as literal as I am, I was like, ‘sure, like where are we going?’. I didn't understand, so I ended up having like 20 boyfriends, and I had no idea why everyone was calling me a slut. I had no idea what was going on because If we never went out somewhere, I just happily ignored them. Not knowing that they thought I was their girlfriend.

Sue Milford is my idol. I have had a lot of therapy over the last two years to come to terms with kind of piecing together what is Autism, and what's not. I have been kind of piecing together my past, and how autism would have affected that. Part of that was just building my confidence back up, and stuff like that. I have developed my self-awareness in the last two years.

School

I hated school, all through. I never didn't hate school. Even in Year 12, when I ended up doing quite well, I still hardly went to school. I just studied on my own. I hated school, so much it was a real struggle to get me to go. I came up with some amazing school avoidance tricks. I would say that I probably missed between a quarter and a third of the school year through my amazing school avoidance tricks. When my parents realised what I was doing, I started to wag school.

There were a lot of reasons why I didn’t like school. It was the bullying and it was a lot of sensory overload. I didn't understand what was expected of me in school. I could easily do the work. I was very lucky, I was a very bright child, and I could always easily do the work. I didn't understand why I had to repeatedly do the work I could do. I didn't understand things like the teacher asking me ‘Cassandra, would you mind doing this?’ and if I said ‘well, no, I don't want to do that.’ I didn't understand why I'd get into trouble. I didn't realise that that was actually a polite way of instructing me so I was perpetually in trouble for things I didn't understand I was in trouble for. I spent most of my lunchtimes in detention, and 95% of the time I had no idea what my infraction was. It was a very confusing place for me, school.

In Year 1, I was shuffled between a special needs and a main stream primary school.  I didn't realise what was happening at the time, I just thought that I had two schools so I had a support system there. They realised that I didn't actually fit into the special needs school criteria. I was demanding much more difficult work so they ended up putting me back into mainstream school. I didn't have any more support until Year 4, when we had a school councillor when I was in Katherine.  He was specifically for the Indigenous kids but he ended up taking me under his wing, because I was struggling so much. In high school, I got a lot of support from really amazing teachers but I didn't have any systematic support.

I could learn everything I needed to learn in the first five minutes and then I'd be bored out of my brain for the next half an hour. I'd be disruptive, because I was bored.  I don't think there's awareness, and there should be, that kids need movement to learn. We need very clear ways, pathways to learn, and that might be way more precise instructions than you would give anyone ever. I think what would have been most helpful is someone teaching me how to do things for myself, how to manage my own learning, because I never really got that, and I had to do that by myself, and I still struggle with that.

My 10 year old stepson's on the spectrum as well.  He is classified as high functioning as well but I really hate those labels. He's very clever but he has a very difficult time of life. I'm not empowered to advocate or support him as his stepmother, through the family dynamics. I feel very helpless for him, because I wish I could help support him but the dynamics of the relationship does not allow that.

Where I am now

I'm a medical student. I study full time and am in my third year of medicine.  I am finding it challenging, very challenging but I think anyone will find medicine challenging.  I don't have any support, because I'm not willing to disclose that I have any requirement for support, because medicine is a terribly unforgiving environment. I think I'm struggling more than what I would if I felt like autism was something that was accepted, and not treated as a disability because I don't necessarily think it always is. I subscribe to the social model of disability so it's better than the medical model.

I think if I disclosed my diagnosis it would have insidious implications. I don't think there'd be any overt discrimination. I think it would be threatening for my career, if people knew me as someone who was autistic. I think there's a fear of autistic still and there's an idea that if you're autistic, you can't be empathetic and medicine has a big thing on empathy. I think there's an idea that if you're autistic, you can't have social skills, and you can't have friends. Which I don't think is true, only because I have a huge friend network nowadays. I think this attitude is true of general society, not just in the medical field.

I have disclosed my diagnosis with some of my friends. My good friends and my peer group, they all know and they're wonderful. I have told a couple of my medical friends, I've asked them if they can occasionally tell me when I'm doing something that is truly weird. Not just quirky me but weird. It's kind of like them policing my behaviour but at the same time, if I never know, I'll never learn, and these things aren't often something I can pick up on my own.  I have several people in my friendship group who are also on the spectrum. Hilariously, I was the first person to get a diagnosis. My best friend in high school has recently actually got an autism diagnosis, she was expecting an OCD diagnosis. It turns out they're everywhere or were everywhere.

I don’t feel that my diagnosis forms barriers for me to achieve what I want to.  If I disclosed it, yes. But I feel so empowered having this. Autism NT is amazing and they are an amazing on-going support for me. Even at 30, I still go in there occasionally, have a cry, because I don't know what's going on with my life and they help me talk through it in ways that make sense to me, and then put things into the, oh this is actually autism, or this is something else. I know it's all woven together, but at the same time some things that I find really, really difficult, I now know why. That gives me a way to learn how to either do it in a way that I can manage it, or outsource the really difficult things to someone who doesn't find it quite as hard, and it won't take up so much of their time. I think having the diagnosis, professionally, if I tell people, it will be a barrier but personally, I think it's completely changed my life.

When I am with people who are also on the spectrum, who are my friends, I think I can be a deeper form of myself with them as they don't judge, and they can do the same with me. I also think that something about being on the spectrum, filters out your peer group from anyone who's pretty judgey, because the judgemental people can't actually be friends with you, because they find it too difficult. People who value traits that are, kind of, spectrumish traits, like: honesty to the point of stupidity sometimes; and are, like not necessarily being able to filter who I am so well in different social situations; and stuff, the people who can't handle that part of me, aren't my friends. I'm really lucky that my peer group are really accepting of me, and who I am although, I do tone it down a little bit with them, compared to my friends who are on the spectrum.

Dreams for the future

I want to graduate and become a doctor, and earn money, that would be amazing. I would like one day to be a very strong advocate, maybe not necessarily for autism, but for people who come from backgrounds that are different. I really want to keep people in education, basically. I kept myself in education and I did that because I really wanted to be a doctor but a lot of people don't have anything like that. Now I would like to be in a position where I can inspire people to keep at something. I don't think it'll be school, I think it'll be university based then, because children aren't my forte. I'd like to be a mentor, and someone who can really advocate for people who come from difficult/ different backgrounds.

At the moment I really want to be a surgeon. It's not particularly abstract being a surgeon. You've got muscles, you've got bones, you've got things that are wrong with people. Look, I'm never going to be a psychiatrist. I'm never going to do anything particularly abstract. The traits that are a part of my diagnosis that will make me a better surgeon include persistence; I think that is a really big one. That's probably like an offshoot or an obsessional kind of trait.

Interests

There are a few special interests that I have that have remained consistent my whole life: health, medicine and anatomy. From the youngest memories I have, I was fascinated by the human body to a very weird extent. I think, whether or not this is a generalisation or not, I think autistic people, if they work in their field of special interest, or work around their special interest, they'd probably have more persistence than anyone else in the world because there's only a few things that I am really interested in, I don't have like a broad range of interests.

My interests have stayed completely steady but they swap in and out. For example, I love planes and helicopters but I'm kind of off planes and helicopters at the moment, and I'm more into True Crime. But I'll get sick of True Crime, and I feel it coming on, and I know that pretty soon I'm going to go back to planes and helicopters. I think probably in the next two months I'll be back on the planes and helicopters. Minecraft, oh my God, I love Minecraft, and I have loved it for ages. I can't get enough of Minecraft, that's how I wind down. I'm 30, and I wind down the same way as my ten year old stepson, playing Minecraft, and building stuff on Minecraft.  What attracts me about Minecraft is that the rules are very simple, there are recipes, and they’re always the same. There's ways to make things, so it's always the same. Once you master something, you always have it mastered. It's just a very easy way to go step, by step, by step, by step. I mean I love Mario as well, and it's not quite the same, but it's a similar kind of idea that once you have one thing mastered, you just move onto the next thing and it's very easy to figure out.

The best part of being on the spectrum

I would have given a different answer not that long ago but I think that it’s that I know who I am, like, 100% I know who I am. I know what my likes are; I know what my dislikes are. I know what I won't do with my time and what I don't want to do with my time. I don't even know how to put this into words. I feel like I've been the same person for a very long time and that kind of the person I was at ten, is very similar to the person I am now. I'm just more mature.

I didn't know that that was something that people struggled with, identity and stuff. I didn't understand until very recently that knowing who you are, and what you want in life and having a very clear path is something that a lot of people don't have. I think that's for me, tied in very closely with my Autism, that I refuse to be anyone that I'm not. That gives me a very clear way forward all the time. My moral compass is unchangeable, which is good and bad. I can't be nice to people who I find repulsive but at the same time I don't waste time on anyone that isn't worth my time.

Where I go to for support

Autism NT. Autism NT, Autism NT, Autism NT. I go there. When I first got diagnosed, I went there a lot. I got a lot of resources, I got a lot of help, I got a lot of books. I got a lot of love, and acceptance. I would really like there to be an adult support group and through Autism NT I did try and set one up a few years ago but there just was no takers. Which was a shame; because I think having peer support is really good. It's also nice just to know you're not alone, and that other people struggle with the similar kind of things. I think you find that in the parent groups. We stopped going a while ago, because we didn't feel like we needed them anymore but when we first went four years ago, for about a year, we used to have the ah-ha moments all the time. When people talk about: this is what my kid is doing, and you're just like, oh my God, mine too, why? Why do they do that? That solidarity is really wonderful. The Autism NT staff are just so magic, and they've been such an awesome support for me.

The other therapies that have been helpful to me include that I see a therapist via a Skype. She is a narrative therapist, which has worked really well for me. Apart from that, I have had a good therapist but I haven't had much luck in Darwin in terms of professional support at all.

What I wish people knew about me

That I do have empathy, for God's sake! This whole theory of mind business is bullshit. I wish that people understood that my intentions are generally really good. I might not get it right, but my intentions are good. I do try and be a good person, even if I don't quite understand why things are happening. Once again though, empathy, I have a lot of empathy. I'm a very empathetic person. I was before my diagnosis, I am after my diagnosis. I think it would be nice if people heard the word autism and thought positive things, rather than negative things.

Even the way Autism is diagnosed is a deficit based kind of diagnosis. I wish people understood what autism was, and they understood the work you put in. Autism is not a disease or a disability that precludes us from existing in the world quite easily but that the newer, typical model of doing things isn't always the best way of doing things and also, sometimes it's downright weird.

Relationships

I've been married twice, so I can give you two different opinions on this. My first husband, I found very challenging. I didn't understand what marriage was about. I didn't understand how to say politely, actually no thanks to children. It was a very dysfunctional relationship and I think part of that was me, part of that was him. A lot of it was just my inability to really grasp the seriousness of some of the things that was happening.

My husband now, is amazing, and he is very accepting of me, and he thinks that I'm adorable. He thinks that all the weird things I do is actually adorable. He's not embarrassed when I I freak out at the supermarket because they don't have my favourite brand of peanut butter, and I can't eat any other peanut butter, but Sanitarium Crunchy Peanut Butter. He will willingly go to other supermarkets to find the damn peanut butter.  But I think it would be really hard if I didn't have him being so understanding, because some of it is pretty weird. Like why can't you just eat a different sort of peanut butter? I don't know the answer to that.

Tips for teenagers and adults

Get organised, learn how to get organised. You've probably got poor executive function and if you want to succeed in life, you've got to outsource that executive function to something. Write a damn list. That would actually be the main advice that I would give people that I would give my former self, and I would give anyone. You have to learn how to organise your life and it might not be the same way as other people organise their life.            

Until you understand the steps for different things, and what you have to do in a day you don't have much hope. I mean, you remember your shoes, but you forgot your lunch.  I walked out the door the other day to go to the hospital to work with no shoes on, I'm 30. If I could run a course in the world, it would be to teach autistic teenage kids how to put their executive function, which they don't have in their brain, into a paper format, or a computer format, or something. I reckon that's what makes the biggest difference in kids getting through the day, and getting through their life, is having that ability to be organised.

I have a number of organisation systems. I have like 20 systems. I have sticky notes on my wall. I have a physical calendar, as well as the night shifts I'm working, so it's all there. I have several apps on my phone to help me be organised. I keep right next to my bed this really handy kind of unhelpful thinking styles chart, which I refer to almost every day of my life, to help me work out what my thought patterns are. I can't really rely on just one system. I can't be happy all electronic, it can't be all paper. I need reminders everywhere. Everywhere.

Tips for partners

Don't take things personally, it's probably not personal.

When I get over wired, and sensitised, and sensory overload kind of stuff, my husband used to try and hug me because that was the way he was taught to make people feel better, which actually ended up making me want to stab him. I'm not a very tactful person when I'm in sensory overload at all, not even a little bit. I would just literally push him away, and be like, don't touch me. It took actually a really long time for us to work out that the best way he could support me when I was freaking out was to be near me, but not touch me.

And by being near me, I mean, actually not too near. Trying to touch me to support me, which is the way he was taught growing up, and the way he operates - don't do that. Don't touch autistic people when they're freaking out or ask before you touch. I think that would prevent a lot of misunderstanding in a relationship. ‘Do you mind if I give you a hug?’ goes a long way.

Accept that we're going to have food things that we like and don't like. Maybe it is only Sanitarium Crunchy Peanut Butter but, you know, don't buy a different sort of peanut butter.

Not everything is because of autism. Sometimes actually you're doing something that's really pissing me off, not because I'm autistic, but just because it is.  I think that's what happened initially when I was diagnosed; a lot of things were put down to that's an autism thing but it turns out it wasn't.    

Top three tips for newly diagnosed families

This is a bit emotional for me. Accept them for who they are. You know, no matter how weird they are, accept them for who they are. Because the more you try and beat the autism out of them, the less likely that they're going to be able to have a happy life. Support them in ways that they need supporting. For example, I needed a lot of support when I was young with anger management because I didn't have a very good emotional range. I had happy or angry and I needed a lot of support to get a good emotional range happening. But, you know, you can't get your kids from A to Z immediately. You've got to support them within what they can do at this current time.

The other thing I'd say is don't compare them to their peers, because people with Autism develop at a completely different rate and the child you see now at 8, or 10, or 12, or for me even, you know, at 20, I was still fairly dysfunctional. They are not the same person they're going to be. Don't lose hope. But mostly, look at who they are, and help them live the best life that they can live, according to who they are.

The best thing I think that could ever happen for an autistic kid is to be loved unconditionally, because the world is really hard. School is hard. Peer groups are hard. You want a safe place, and if home isn't a safe place, if you're not loved unconditionally at home, then you've got nothing. You've got no safety.

The person I am now, if you saw me at 10 years old, you would never in your wildest dreams, have put me where I am now. I was still being physically dragged out of class from underneath desks because I was having meltdowns. I was being given detentions almost daily for lashing out. I was a very overwhelmed child. The person I was at 15, you probably still wouldn't have really pictured me h

I think the first time that I really kind of was able to control the way I was, was probably when I was about 18 or 19. I know that the pattern of development that I've had is not untypical of autistic kids. Once again, your kid now, your newly diagnosed child, who is struggling, who is freaking out, who is either a terror at school, or a terror at home, or both. The way they are now, they're not static, that's not how they're going to be. It might not be the sort of gains that I've had, that's fine; a lot of people aren't going to be able to live completely independent lives. But don't look at your 10-year-old, and think that the way they are now is all they're going to be. Because I guarantee you, it's not… they're going to be truly amazing. 

My main hope in participating in this project and sharing my story is to get parents to understand when their kids are newly diagnosed, that they're growing up. They might grow up in a different way, they might grow up and it might seem really slow. Or it might seem like you're three steps forward, two steps back. It might be regression; I certainly have a lot of regression because of my childhood. I'd really like parents with newly diagnosed autistic kids to know that your kid will change, and they'll probably turn into people that you probably can't imagine what sort of person they'll turn into but only if you treat them well, nurture their interests, love them, and don't take some things personally.

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