Category Archives: Humans on the Autism Spectrum 2019

Humans on the Autism Spectrum 2019

Humans on the Autism Spectrum – Lochie, 19

I’m 19 years old. I’m an I CAN mentor, an enthusiastic video gamer – League of Legends is my favourite – and last year I moved into my own place with four other housemates.

Growing up, I didn’t really have trouble making friends, but I did have trouble keeping them. You know that one kid who pushes a joke just a little too far or doesn’t know when to stop talking about something? That was me. Thankfully, I have some close family members who are Autistic – including my dad – so I didn’t have to look far to find people who understood me.

I was first introduced to I CAN in 2013, which was the same year it was founded, so I’ve been around since the beginning. I heard Chris Varney speak at a local support group event about his vision for I CAN school programs, and I fell in love with the idea of it straightaway. He talked about creating a model in which no one would be ignored and everyone would have a voice.

This resonated with me because my own school experience was not that great. In terms of voices, I was talked about a lot at my school – my negatives were a constant topic of discussion – but little was done to improve the situation or to highlight my positive attributes or those of other students with support requirements. In 2013, my goal as a 13-year-old listening to Chris Varney was to bring I CAN to my school and change the culture.

That part of my quest was totally unsuccessful, but what has been very successful is my personal connection to I CAN. I started attending I CAN weekend camps and over time became a camp mentor and then a school mentor. I’ve taken part in a large number of the camps that I CAN has hosted.

Because of the people in my personal network, I don’t hear a lot of the negativity about Autism that’s out there any more, though I certainly know it still exists. Many kids come to our programs with very, very negative perceptions of Autism that they’ve internalised from others. I remember one boy who came to a camp and could explode aggressively if he even heard the word “Autism”. But, two days later, he was standing up in front of his peers, giving an “I CAN talk” and telling everyone, “I’m Autistic.” That’s the power that can come when you are surrounded by peers who understand and accept you.

Our emphasis at I CAN on the strengths-based approach to Autism really makes sense. Autistics represent a big percentage of the world’s population. When society shuts us down and tells us that we are defective, it limits what we can contribute. When we are validated and believe in ourselves, we can do so much more.

Especially for Autistic kids, I think it’s important to get the balance right between genuinely building them up and not merely inflating them with hot air. Part of that process is letting them experience challenges and not always being shielded from failure. Something I tell my mentees often is that they don’t have to be perfect. Struggling is part of life’s journey. I think there’s a way that we can offer support that still empowers young people. I try to help my mentees build the ability to see their own strengths for themselves.

Still, I see a lot of students – and sometimes their families, too – looking for that validation in other forms, such as top grades or high ATAR scores. There’s already a lot of pressure for Autistic kids to get through the day socially and from a sensory perspective. When I help my students with any schoolwork, I always highlight the benefit that comes from putting in the effort and what can be learnt from making mistakes, rather than signalling that their worth is tied to a particular letter or number result.

It’s very rewarding to mentor Autistic kids and to help those who are not Autistic understand how to better support Autistic students. Every Autistic voice can help with this process, and I think it’s so important to include younger Autistic voices in these conversations. We have the most recent lived experience of the educational system. When you include and listen to our voices, you will be hearing what Autistic students need. Right now, in the school system as it currently is.

In fact, for me, one of the best parts about being involved in I CAN is that I know my voice is valued. I don’t subscribe to the pyramid approach, where voices at the top matter more than others. I view everyone at I CAN as a peer, including Chris Varney, our Founder and CEO. Even when I was 13, I never saw him as “Chris, the national leader”, and to this day, I don’t see him as “Chris, my boss”. He has always been “Chris, my mate who is a huge Star Wars head”. I respect him as a peer, and I know he feels the same way about me. We have different responsibility levels, but we are both doing the same work: building a world that embraces Autism.

Humans on the Autism Spectrum 2019

Humans on the Autism Spectrum – Christian, 24

I’ve been living in Paris since the start of October 2018, working as an English language teaching assistant in a primary school, a high school and an applied arts college. Before leaving Australia, I was working as a mentor and speaker with the I CAN Network and had just completed my undergraduate studies in French, Creative Writing and Linguistics.

I’ve been an Autism advocate since the age of 13, but my path to self-acceptance was anything but easy, particularly as it related to making friends. My social struggles as a child profoundly shaped my journey.

I think that because of my Autism my mind naturally works in extremes. When I was about six or seven, other people’s opinions of me started to become more important to me. I wanted them to like me, but I had no idea how to make that happen. I tried really hard, and failed even harder.

By the time I was eight or nine, I’d basically given up. I’d learned that making friends is really difficult but making enemies is easy, so I started purposely making enemies because at least that way I would still have some kind of a relationship with other people. I had convinced myself I didn’t need friends, until one lunchtime when I literally saw the true value of friendship for the first time. As usual, I was hiding in the bushes and spying on some of my classmates while they were playing soccer on the “bottom oval”, the one that could only be reached by a steep hill or a lot of steps. I was terrible at ball sports so I had no desire to play soccer with them, but clearly I still wanted to be a part of it somehow. I was also hoping one of them would see my hiding and start shouting at me, so I could shout angrily back at them. I just wanted to connect with someone my own age. A boy in my class had fallen over and injured his left leg. There was no way he could make it back up and out of there alone, but he wasn’t alone. Without even being asked, two of his friends supported him on either side and helped him all the way up. That was the moment I realised that my enemies would never do that for me. That’s what friends were for.

So after years of making enemies, I shifted my energies towards getting people to like me. This time, I was determined to pull it off. I knew everything had to go perfectly, and seemingly it did – I’d finally made some friends! Now all I had to do was keep them. I tried so hard to give them everything they wanted from me, to be the sort of person that was sure to appeal to them. In fact, I tried so hard to draw them in that I ended up pushing them away. I had turned into this cheesy, manufactured version of myself that nobody liked, me included. I learned the hard way that masking who you really are never allows you to be the best version of yourself. 

Towards the end of primary school, I found the right balance. At last I hit upon that Goldilocks combination of treating others with respect while being true to myself. In the end it came down to the simple act of treating other people the way I wanted to be treated, and also expecting them to do the same for me. After my previous disastrous attempts at making every effort to please other people, what eventually allowed me to accept myself was when one classmate showed genuine interest in me and my interests. Others soon followed. Until someone showed interest in me, I had no idea how to show interest in other people without selling short huge parts of myself.

What I wish I could go back and tell my younger self – and what I’m so passionate about passing along to other Autistic kids – is that struggling to learn how to make friends is actually going to make you a better friend someday. You’ll never take your friends for granted, because you know what it’s like not to have any. You’ll know exactly how much work goes into building and maintaining a friendship, and you won’t be cutting any corners on it. Your friends will notice and appreciate your loyalty. They’ll trust you, they’ll be open with you. They’ll do their best to be as supportive of you as you are to them. They’ll stand up for you so that you don’t have to stand up for yourself all by yourself all of the time. You can finally let your guard down and start feeling like you’re truly living. You don’t have to be ridiculously popular to feel this way. All it takes is one person who sees you for you to start that process.

Your tribe is out there. You might not find them as a young person, and they might not all be exactly like you, but they are out there and they will like you for who you are. Don’t sell yourself short.

Humans on the Autism Spectrum 2019

Humans on the Autism Spectrum – Sally, 38

Content warning: mention of suicide

I’m 38 and I work part time as an I CAN mentor and network leader in the Goulburn-Murray region. I enjoy reading and finding ideas for things online. I have a wonderful husband who is very understanding and always willing to listen. I am also the proud mother of two Autistic children, who love me just as I am.

For me, Autism is an explanation of why I am different and why I sometimes feel like I don’t fit. Understanding Autism helps me to stop trying to be something I cannot be and feeling that I should be doing something “better”. Instead, I accept how I am and concentrate on the things I enjoy and the things I do well.

I think in many ways people try to be inclusive but they tend to do it without really knowing what an individual person needs to be their most successful self. There are still a lot of assumptions about who is deserving of assistance and what that support should look like. Often, in order to be included, there is pressure on us to become more like everyone else instead of becoming more like our true selves. That is, many times inclusion means, “We will give you the tools to look more like one of us” rather than “We will include you by respecting and celebrating who you are.” Personally, I feel that many workplaces are especially difficult for Autistic people and it is not an easy fix because the challenges will be different for each person. Through my personal experiences and networks, I know that it is common for people with Autism to struggle to find or keep a job. Many will burn out from the pressure, as I have in the past.

As we work more towards a society that is truly inclusive, organisations like the I CAN Network are very important. So often, Autistic people need a bit of support to cope in a world that is not designed for our needs. We know we are different and the I CAN Network is a place where we can find others who are like us so we don’t feel so alone anymore. Knowing that there are people out there who believe we have something to offer helps us to believe in ourselves too.

Over the past couple of years, I have slowly built my involvement with the I CAN Network. I started volunteering with a group then moved on to being a mentor and finally a Network Leader. The biggest change in my life has been that I now feel capable of doing paid work. My previous experience with employment was overwhelming and in the first year I had a full-time job, I attempted to take my own life twice. After that, I felt that I would never be able to cope with employment and I did not want to take the risk. I CAN has been great for me because I have been able to accept work gradually and I am not expected to work full time. It has given me the privilege of feeling successful and seeing my work make a difference for others. I love planning the activities and looking for new ideas for the sessions. I CAN has shown me a greater range of what Autism can look like for individuals, too. It has also helped me to be more positive about Autism, because if I am not positive, how can I expect others to be?

To help create a world that is more welcoming for Autistics, it is critical to speak about Autism in a positive way as it boosts people’s confidence and confidence makes a big difference in our capability. When Autistic people feel good about who we are, our strengths grow and our struggles shrink. So many “problems” associated with Autism are not actually problems – it’s just that the rest of the world isn’t willing to adapt their way of doing things or their expectations of how something will be done. As people get to know more Autistics, they are likely to be more open to new ways of working to support everyone’s needs and have more positive interactions with all Autistic people.

A world that embraces Autism will accept different ways of doing things without judgement. I can think of so many changes that would make a difference. Autistic people would be encouraged to communicate in a way that suits them, whether that is writing, drawing or typing instead of speaking. There would be more accessible quiet spaces in offices, schools and shops where people can recharge if they need to. Working conditions would become more flexible, with people having greater control over when and where they work, as long as they get the job done well. As a society, we would be looking for ways to leverage individual strengths and collaborating more often to cover each other’s weaknesses. There would be more opportunities for people to contribute and feel successful, and we would redefine what “success” looks like so that it’s not such a narrow band. I know this world is possible because this is our world at I CAN. I hope others will join us soon.

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If you are struggling and have suicidal thoughts, please know that you are not alone and help is available: Lifeline: (13 11 14 and lifeline.org.au), the Suicide Call Back Service (1300 659 467 and suicidecallbackservice.org.au) and beyondblue (1300 22 4636 and beyondblue.org.au).

Humans on the Autism Spectrum 2019

Humans on the Autism Spectrum – Caitlin, 22

I’m 22 years old and I’ve been a mentor with I CAN since 2015. I’m passionate about life, politics, music, and of course my cats and dogs. I also have a fascination with how cults work – one of the more unusual interests I’ve had over the years. I am in my first year of uni and am so proud and excited that I’ve achieved this goal. Growing up, I never thought that this would be something I’d accomplish.

From a very young age, I sensed that I was different. I desperately wanted friends but wasn’t always sure of what to do to keep them. I was the ultimate “lurker” who was on the outskirts of social circles, totally confused. I was bullied and misunderstood.

By Year 5, I became more aware of the fact that others thought I was weird. I used to spend hours watching The Bold and the Beautiful and Neighbours – apparently, without blinking much – to learn about social interactions, even though these were highly dramatised versions of life. For several years, I was obsessed with the Leveson Inquiry, which isn’t exactly something that drew other kids my age to me! It wasn’t until I got into high school that I met a small group of non-judgemental girls, some of whom are still my friends today.

My mum signed me up for the very first I CAN Young Adults camp in 2014. I was 17 years old. At first, I resisted the idea. I cringe when I think of my attitude at the time: “I don’t want to hang around with people like THAT!” I had a lot of misconceptions about Autism, especially about peers with higher support requirements. On the first evening of camp, I felt really out of place. By the end of the weekend, my mindset had shifted to seeing all of the things I had in common with my peers there. I felt like the people at camp could relate to me and how I processed the world. That was the beginning of my personal rethink on Autism and I’ve been growing in my knowledge ever since.

Being a mentor with I CAN has been such a significant part of my life for the past four years. I love working with school groups and camps, and for more than a year, I’ve been co-leading our online mentoring girls’ groups. When I think back to all of the issues I had with self-esteem and self-doubt as a teenage girl, I’m grateful that I have a chance to help others navigate their high school years. There seem to be some things that are quite common for Autistic girls to experience. It can be hard for us to find our place. When mentees come together in our groups, you can just sense the relief that comes from connecting with others who understand.  

One of the things that girls and women often face is people questioning our Autism diagnosis. Recently, a much older uni classmate told me that his partner’s cousin was on the spectrum, implying that because of this connection, he really “understood Autism”. When I mentioned that I was on the spectrum, his response was, “Really? Are you sure?!”, and then he went on to explain how “these things” like Autism and ADHD are over-diagnosed. I know it’s not my duty to educate every ignorant person, but I did enjoy setting him straight!

I find that a lot of people have their own very limited view of what Autism is, and they struggle to see past that. I’ve encountered people who believe that people with Autism can’t achieve anything. I’ve also met people who think that the only “successful” Autistic people out there are those who are doing extraordinary things. I challenge those views.

For me, what has helped the most in terms of strengthening my self-acceptance and self-confidence is to try new things. Like many other Autistic people, I like security and the safety of routine. But pushing myself out of my comfort zone over time has been so critical in helping me grow as a person. My parents have been really good at encouraging me. They haven’t hovered and they’ve given me space to make a tonne of mistakes – and they’ve reacted in a calm way when I’ve stumbled! I try to encourage the young people I work with to believe in themselves and take some chances as well. There are numerous paths to achieving your goals, and it’s okay to stumble along the way.

One of my friends recently ran into someone who was part of my support team many years ago and this person was stunned – absolutely stunned – to hear that I’ve made it to uni. Back when he knew me, I was the girl with all of the labels next to her name – Autism, ADHD, Dyslexia – that other people used to make unfair judgements about. I was the girl who wasn’t supposed to achieve anything. But I’ve learned to embrace my differences, take chances and surround myself with people who accept me – and look where I am now!

Humans on the Autism Spectrum 2019

Humans on the Autism Spectrum – Team Bolgies

We are the Bolger family! Clay, 43; Rhona, 43; Alyssa, 13 and Lachlan, 12. We are all on the spectrum and we enjoy spending time together, with a common fondness for board games and road trips. Another important member of our family is our dog Zappa, a Staffordshire terrier cross who provides great emotional support for us all. We approach every challenge as a team and love the empowerment that comes with overcoming obstacles. I am a professional musician playing in pubs and live venues across Perth, while Rhona is a passionate literacy specialist teacher. Alyssa is happily attending high school while Lachlan is homeschooled by Rhona and myself.

Autism is a vital part of our being. It shapes every experience that we have, and it influences how we see the world and navigate our way through it. It also plays a big part in how we function as a family unit. Our autistic perspectives on life have created a very special bond, which is why we call ourselves Team Bolgies. If it wasn’t for Alyssa and Lachlan’s childhood autism diagnoses, we might not have identified our own neurodiversity. Rhona was diagnosed at the age of 41 in August 2017 and I received mine in December that year, aged 41 as well.

After Alyssa became the first autistic Channel 7 Perth Little Telethon Star, we started travelling to schools to talk about life on the autism spectrum. We formed Alyssa’s Autism Acceptance Project (or, The AAA Project) around the breakfast table one morning, with the hope of empowering autistic kids to embrace their neurology and educating others about autism. We believe that when you know better, you do better, and we want to help provide our community with knowledge of the neurodiverse world.

We’d love to prevent other families from experiencing the ‘Tut-Tut Brigade’. That’s the term we coined for those members of society who assumed our kids were just being naughty when they were struggling to deal with sensory overload. Along with this, we’re doing our best to educate the community about the individuality of the spectrum. Our diagnoses are routinely questioned not only by neurotypicals, but even by some other autistics. According to some, our ability to maintain employment, build a successful marriage and function as a happy family unit means that we can’t be “autistic enough” to have a valid autistic perspective. We’re continually working on ways to overcome these challenges.

We are constantly striving to shape a more inclusive society, particularly in education. While some schools are making strong efforts to provide inclusive environments, there are plenty that need to understand that effective inclusion is far more than just proximity. There are many passionate educators out there trying to make their classrooms more inclusive for students of all abilities, but they need to be supported by their school administration and by the Education Department in their state or territory. The more that our education system and workplaces listen to autistic voices, the further we can proceed towards effective inclusion. We need more people to stop talking about us and start talking to us.

As a society, we need to stop seeing an autism diagnosis as a bad thing and start embracing the power of difference. We are all very grateful for our autistic brains, and we don’t believe that should warrant any negativity from society. Some of the biggest technological advances in our world have been made because of the autistic thought process. We’re focused problem solvers. The world wouldn’t be where it is today without us.

Receiving a diagnosis and having the opportunity to understand our neurodiversity has been one of most empowering things to happen to each of us. Organisations like the I CAN Network bring people of the same neurology together. The opportunity to find other people who experience the world similarly to you – your tribe – is a gift, and that’s what the I CAN Network provides for the people it works with. We would love to see the I CAN Network launched in Western Australia someday soon. It’s exciting to know that there are increasing ways that autistic young people across Australia can be a part of I CAN through online mentoring.

We met Chris Varney for the first time in 2015 after Alyssa gave her first ever public address in front of nearly 300 people at an autism symposium. In her speech she expressed that she was proud to be autistic, and Chris echoed that sentiment during his presentation on the I CAN Network. Alyssa turned to Rhona and said, “He’s like me!” We were stirred by the idea of autistic people mentoring others in the autism community. A common goal for I CAN and The AAA Project is the empowerment of autistics and to cement the belief that they can achieve anything.

With this in mind, both of our kids have started their own business. Alyssa makes personalised lanyards and keyrings under the name of Lyssie’s Lanyards, and Lachlan has just started Lochie’s Walkies, which is a dog walking service. He spent the majority of last year running Nummy Nibbles, baking treats for pets, but it become too difficult to maintain. Lachlan particularly enjoyed meeting his animal customers and gave a portion of his profits to animal rescue shelters, which resulted in him being named a junior ambassador for the RSCPA.

Rhona and I have been amazed by the support both kids received from our family and friends in these ventures, and they even attracted new customers via their online storefronts. We will continue to encourage them to achieve their goals and help show society that autism is not a hindrance to being happy and successful.

Humans on the Autism Spectrum 2019

Humans on the Autism Spectrum – Camilla, 21

Hello, my name is Camilla. I’m 21 years old, and I am a daughter, a sister, an educator, a wife and a mumma to be. (My first baby is due next month!) I’m massively cat obsessed and also Autism obsessed. For people who don’t know me, well, I pass for “normal”, but really, I’m a person who uses my understanding of the neurotypical and neurodiverse worlds to connect with others, educate everyone on the importance of embracing uniqueness and think outside of the box.

For as long as I can remember, I’ve felt different, and I could sense that the other kids viewed me and treated me differently as well. When I was diagnosed at age eight, I couldn’t wait to tell my peers. I remember thinking, There is a reason you find me weird, and feeling very validated to have confirmation of my Autism and ADD. Still, this self-knowledge didn’t solve the social challenges I faced in primary school. Even when I was “included” physically, I was excluded because people didn’t really get me. It wasn’t until Year 7 that I found a small circle of “my people”, one of whom is still a dear friend and was at my baby shower this past weekend.

I faced other challenges at school, including the fact that I was my own worst critic. Since my neurodivergent brain absorbed things differently to most of my peers, I felt that I had to work extra hard. I pushed myself to the brink in everything and wanted to prove that I was capable. I became an expert at masking at school and then would melt down regularly moments after arriving home.

As a young person, I was very fortunate to have an extraordinary personal “I CAN Network” supporting me, including my main aide in high school from Years 7–12, Kerry Shiels. I can still hear her voice telling me, “You are smart, capable, energetic and lovely. You can do anything you set your mind to – you might just have to do it differently.” My dad, who was and remains my best friend, has always been brilliant about encouraging me and keeping a positive attitude.

Despite this amazing support, there have been some significant challenges. I have battled anxiety and depression. As an older teen, I fell into a relationship that soon became toxic. My boyfriend at the time didn’t understand Autism and blamed me for any and every issue that arose in our relationship. As an overachiever, I already had the tendency to blame myself for things and want to please other people. I feared change. Every time I was ready to walk away, my boyfriend would do something “nice” to make me second-guess ending the relationship. If it hadn’t been for the need to move in order to attend university, I fear to think how my path could have unfolded. As it turns out, I met my husband about a year into my university studies. We were both novice powerlifters at a local gym and hit it off immediately. My husband is the epitome of a “nice guy”, who is so open and accepting of everyone.

I try to use my influence to promote understanding and acceptance, especially of people whose brains work differently from the norm. As a society, I think we are far too quick to judge a book by its cover. I cringe whenever I see assumptions people make when they hear the terms “Autism” and “ADHD”, particularly the way society tends to limit children with these labels. When a child receives a diagnosis, that shouldn’t be an invitation for the rest of the world to make assumptions. Rather, it should be a call to action for adults to better support that child and help peers understand and appreciate that child. There is still too much negativity about Autism, especially on social media. We Autistics often feel out of place as it is. We are already vulnerable. When the negativity grabs hold, it can really prevent us from living our best lives.

What gives me hope for the future? Without a doubt, it’s the young people I mentor through the I CAN Network. I primarily work with Years 3 and 4 students, and I just love everything about it. I love being able to use my personal experiences to help them navigate the often-rocky paths of life. Sometimes that means helping them figure out a good way around a massive mountain that is blocking their path, and other times, it means saying to them, “I will help you climb that mountain!”

Seeing the positive growth in these kids – watching their personalities, acceptance of others and self-identity develop – fills my heart. Kids represent our future. They will be the ones who shape our country and our world. If they have open minds and learn to love themselves and accept others, there is no limit to how much they can change the world. I hope my baby grows up feeling the same way.

Humans on the Autism Spectrum 2019

Humans on the Autism Spectrum – Max, 30

I’m an Autistic adult whose passions are writing and advocating for others on the Autism Spectrum.  I’ve been a mentor with I CAN since early 2014, so for five years now.

Autism is the lens through which my brain sees the world and projects into it. For me that lens is like a magnifying glass; it enlarges the tiniest details, and when calibrated just right, focuses my thoughts into a beam of pure concentration. My strengths are my resilience and my affinity with words. To me words almost have their own taste and texture, I can almost physically feel the way they flow together.

Growing up, I struggled to see my own strengths. As a young person, I was often shamed for being the way I am, but the truth is, the main person who told me I couldn’t do things was myself. I used to constantly underestimate myself and focus far too much on my struggles rather than my strengths. As a teenager I thought I would never be able to move out of home, or go to university, or have a job. I’ve now done all those things, thanks in large part to an incredible support network that believed in me a lot more than I believed in myself and pushed me to have a go and challenge my negative self-talk. It turns out I had it in me all along, I just didn’t know it.

A big part of my personal story is that in addition to being Autistic, I have Obsessive Compulsive Disorder (OCD), which is a common co-occurring condition among people on the spectrum. This actually poses far more challenges for me than my Autism. OCD can turn even the simplest of tasks into a terrifying ordeal. If I touch anything that has been touched by somebody else or has touched the ground, I am overwhelmed by the urge to wash my hands. If my pen falls on the floor, it’s like it has fallen into a pool of acid. I press pedestrian crossing buttons with my knee, I push door handles with the back of my hand, I hold my breath around people who are coughing or smoking. There was a time, when I was 18, when I could not leave my house because the world was just so full of frightening stimuli.

My approach to combating this has been a process of gradual controlled exposure. Every day I try to push myself just a little bit to confront my triggers. In this way, I have slowly improved to the point where I can now do things like shake people’s hands, get close enough to a bin to throw something in, or use a public bathroom, all things that were unthinkable to me ten years ago. Every day is a battle, and sometimes it seems like I’m not improving at all, but when I compare myself now to how I was in my late teens, I’ve come further than I ever dared to hope.

My friends, family, and colleagues all help to support and empower me by believing in me and thereby validating my sometimes shaky belief in myself. I’ve been able to build on this bedrock of acceptance and support in order to tackle the most debilitating aspects of my OCD and embrace my Autism.  The I CAN Network has been pivotal in my journey. It provided me with a supportive group of Autistic peers for the first time in my life and helped me to see my Autism as something that could be a strength instead of just a liability. When I was a kid, I didn’t have access to older Autistic role models to tell me that I wasn’t broken and that things would get better. That would’ve made a world of difference for me, and so I want to provide that support for those growing up on the spectrum today. That to me is the essence of I CAN.

I’m very fortunate in that through my work with I CAN and other Autism advocacy groups, I am constantly surrounded by remarkable Autistics, and through our I CAN blog, Grapevine, I have the privilege of being able to share their stories. It is my sincere hope that this will help society to see a different side of Autism to what they’re used to seeing.

Autism is a core component of who we are, and as such casting it as a negative can lead us to feel like we are fundamentally broken. On the other hand, a positive outlook on Autism allows us to feel empowered and capable. A world that embraces Autism would be a world where we are not seen as diseased or defective versions of “normal” people, but as valid and valued versions of ourselves. Autism acceptance has grown in leaps and bounds within my lifetime, but we’re still a long way from complete inclusion. It’s a work in progress.

Until then, I think one of the most powerful things a person can do is be an example to others in how we treat those who are different, and challenge discrimination and misinformation when we see it.

To my mentees and other Autistic young people reading my story, remember to focus on your strengths; they will take where you need to go in life. There will be tough times, but you are stronger than you think you are, and eventually things will get better. Just because you can’t see the sunrise at midnight, doesn’t mean it’s not coming.

Humans on the Autism Spectrum 2019

Humans on the Autism Spectrum – Carla, 23

I’m 23 and love video games, music and mindfulness. Currently, I’m doing my placement for my Social Work degree at uni during the day and leading online mentoring groups several nights each week. I’ve been an I CAN mentor since 2016, and I helped create the online mentoring program that we launched in 2017.

A lot of kids come to our programs feeling misunderstood or unsupported. Some haven’t had the chance to connect with peers on the spectrum. Often, they associate their Autism with something negative. In our groups, we spend a lot of time celebrating interests, talking about our individual strengths and exploring what it means to be Autistic.

If you’re comfortable with your Autistic identity, and you see Autism through a strengths-based lens, that can make a huge difference in your ability to get through life and deal with challenges that inevitably occur. But it takes practice. It doesn’t just happen overnight. I’m proud of who I am and pretty outspoken about that, but I do have days every now and then when I am struggling and looking for something to blame. It would be easy to blame Autism, and that’s where self-reflection comes in. I try to remind myself of the same advice I give my mentees: be kind to yourself and know that you will get through this.

I use a lot of my past experiences to help guide my mentees. For instance, growing up, I put a lot of pressure on myself to achieve and have a purpose in everything I did. Now I’ve become better at admitting when I’m struggling, setting boundaries and just allowing myself time to disconnect and come up for air by reading, taking a walk or baking. That’s a good lesson for younger Autistics, too.

I’ve also discovered how important it is to be myself, just as I am, not who society says I should be. I’ve always been a quirky type and not very feminine, and I didn’t really fit the mould of what most of the other girls were like. There were some boys who gave me a hard time because of that. I remember giving into the pressure to wear make-up to parties, family events and friend gatherings – I hate make-up – because I feared I would look ugly and like a total weirdo without it.  The make-up was a form of masking who I really was.

When you mask, it’s suffocating. It’s almost like you can’t breathe. When I encourage my mentees to “be unapologetically you”, I am essentially saying, “Let yourself breathe.” If you’re not yourself, you’re not going to feel good. The reason that so many people are struggling with self-esteem issues is because most of the time, they aren’t being themselves.

From what I’ve experienced personally and seen with my mentees, Autistic young people often feel huge pressure to mask. Adults, too. A lot of that can come from the messages that society sends about Autism being bad or insisting on things like eye contact that might be uncomfortable for us but make us look “more normal”. Sometimes parents might encourage their Autistic child to behave in a certain way to avoid being bullied or excluded – and even though this encouragement is well intended and comes from a place of love and worry – it adds pressure for kids on the spectrum to hide who they really are. I wish society as a whole placed more emphasis on accepting differences rather than signalling to us that we are the ones who need to change.

There are many ways that people who aren’t on the spectrum can help with that acceptance. For starters, please listen to us. It’s so important to learn about Autism from people who are actually Autistic. Take the time – really take the time – to get to know us and understand us. This goes for so-called “Autism experts”, too, who have their own biases and don’t always consider our lived experience in their work. It’s impossible to understand us if you are looking at us as a problem to solve or view Autism as some sort of “tragic disorder”.

When people focus on the negatives and frame Autism as a tragedy, it makes everyone miserable – especially us. And that’s just such a waste of time. My hope is that over time, word will get around to everyone that Autism isn’t something negative. When more people see Autism as a positive, that will drastically reduce the stigma that exists and will provide us more opportunities to show what we can do. Please give us that chance.

A few days ago, one of our mentees, Jordan, was featured in “Humans on the Autism Spectrum”. It makes me so proud knowing that I am doing something that helps Autistic students see themselves through a strength-based lens. The sooner and more often kids get those positive messages, the better. If she’s this confident in her Autism at 11, just think about what the future can hold! It’s awesome to be a part of the change.

Humans on the Autism Spectrum 2019

Humans on the Autism Spectrum – Thomas, 18

I’m 18 years old. I love anything sports-related and I like collecting sports stuff, mostly things to do with FIFA and FIFA World Cup. I play cricket and football and am also a fan of soccer, basketball, cricket and football.

Autism to me means that I can really concentrate on stuff that I am very passionate about: for example, I can name every FIFA World Cup first place winner and at some editions of the FIFA World Cup, I can name the top four finalists and many of the winners in events from the Olympic Games editions. I can also name every AFL grand final winner from this century and can do the same with the FIFA World Cup, Olympic Games, FIBA World Cup and ICC Cricket World Cup. And I can name the capital city of most European countries.

To me, sport is important because if you play team sports, you get to socialise, you feel good doing it and it’s fun. Also you learn how to cope when losing and that can help in your personal life. Sport has helped my Autism because I get to socialise with people around my interest. I would encourage other Autistic students to find a sport that they love because sport brings people of all backgrounds and abilities together. Doing something you love with others who share the same interest is good for anyone.

I admire a lot of sportspeople, particularly those who have experienced hardship and come through the other side. I can relate to that because I’ve overcome stigma and negativity by being willing to have a go at everything that comes my way! If I had to name one player who really inspires me, it’s German soccer player Marco Reus. Marco originally missed out on the FIFA World Cup in 2014 and the UEFA Euro in 2016 due to injury. In the FIFA World Cup in 2018 he was Man of the Match in one of the games. In 2019 Marco now gets to captain his club side Borussia Dortmund in the Bundesliga, which is Germany’s First Division.

Humans on the Autism Spectrum - Thomnas

I admire and feel supported by a lot of people I know in real life, including my family (I get my positivity from my dad), Aquinas College and their Educational Support Staff and mentors from the I CAN Network like Max Williams, Chris Varney and Daniel Munter.

Before I became involved in I CAN, I didn’t really know anything about it and I didn’t even know much about Autism! By going to I CAN sessions, I’ve learnt about my own Autistic strengths and how I should concentrate on those rather than my weaknesses. I’ve been able to see the interests, strengths and weaknesses of other Autistic peers and my mentors and compare them with mine. The I CAN Network is important to me because it is helping to make a world that benefits from embracing Autism and focusing on what Autistics can do.

I think it’s so valuable for Autistic students to educate their peers on Autism, if they’re ready to. People might not know you’re Autistic or what Autism is unless you say something. If you’re not comfortable disclosing that you’re Autistic, I would say that’s all right, too. You should do things when you are ready.

When I disclosed at my school that I was Autistic, things got better. After I went on TV in 2017 in an ABC Lateline segment, I made more friends at school. People wanted to be my friend. I wasn’t scared of disclosing my Autism to my peers because being Autistic doesn’t really bother me. There’s nothing wrong with Autism. In fact, being Autistic makes you unique and special. 

One of the biggest reasons to talk about Autism positively is so that Autistic children can grow up feeling good about themselves and so that their peers understand that being Autistic is all right. The more people who hear positive things about Autism when they are young, the better chance we have of building a world that is inclusive.

Humans on the Autism Spectrum 2019

Humans on the Autism Spectrum – Yenn, 44

I was featured in Humans on the Autism Spectrum a couple of years ago under my old name, Jeanette. In the past year I have made some big changes in my life and one of the biggest has been to change my name to Yenn Purkis. The reason I did this was to affirm who I am as a gender diverse Autistic person. ‘Jeanette’ no longer worked in terms of defining my identity. In fact, it never really worked as a descriptor for who I was. I always felt it was like an old jacket that didn’t quite fit but which I kept on wearing because I didn’t have anything else.

All this affirmation has led to greater self-respect and thoughtful reflection. Self-respect and acceptance are extremely important things for an Autistic person – as they are for any person. For me self-acceptance is a protective factor for a range of good things, including mental health and wellbeing. If I had such self-acceptance when I was younger my life would almost certainly have been very different.

I went to school in the 1970s and 80s. There was no appropriate diagnosis for me – or anyone else – given that much of the work on Autism was still only available in German until the early 1990s. This meant I felt completely alone much of the time. I had few friends and a lot of bullies. I longed to be someone else. It felt like everything I did and said was “wrong” and resulted in hatred and teasing. I kept trying to change who I was. I changed my hair and fashion as I was bullied for that but it made no difference. I lost my English accent quickly and deliberately but that made little difference. I even changed the spelling of my name but this was different to my name change in recent months. I changed my name as a teen because people gave me a hard time about it and I wanted to distance myself from it. This was the complete opposite to affirmation of identity. It was a sign that I hated myself possibly even more than the bullies did.

Humans on the Autism Spectrum - Yenn

Essentially, I wore a mask – or tried to – and did everything I could to hide my actual identity. I viewed myself as an embarrassment and worthy of all the hatred I received. For years I have imagined what I would say to my teenage self. Much of my advocacy work now is with teens and young adults, as I want to help young people to avoid all the hell I went through at their age.

We didn’t have Autistic pride when I was a kid. If someone had told me to be proud of my difference and love and value myself just as I am, I would have laughed – humourlessly. So while it took me many, many years to get a point of self-acceptance, young people now have a lot more opportunity to do so. This doesn’t mean that acceptance is a given – and it still needs to be fought and defended – but we do have the knowledge these days to enable self-acceptance, respect and pride among Autistic young people. I think this means we need to imbue every Autistic child with a sense of pride in who they are, as themselves. The I CAN Network does a lot of good work in this space that should be supported and commended.

It is important to note that self-acceptance does not necessarily equal happiness. I love and value myself now which is fantastic but it doesn’t spare me from challenges or misery. There are a number of elements of my life which are hard. I have some significant mental health issues that can make life very difficult indeed. As an out loud and proud Queer Autistic person I face bigotry and trolling quite often. Self-acceptance is not a guarantee of happiness or a pleasant life but it does a few things to help deal with those life challenges. Self-acceptance goes towards building resilience. It gives you a strong, positive identity as the basis with which to move through life. It helps you see yourself in a positive light which makes it easier to manage when people try to invalidate you. I didn’t have self-acceptance when I was a kid but I have learned to have it now. Self-acceptance is a great thing to help Autistic young people build and develop.

To Autistic young people now I would encourage you to be proud. You are truly amazing and have a lot to offer the world. If you can, spend time with people who know how amazing you are and who respect and value you just as you are.