HUMANS ON THE AUTISM SPECTRUM – ARCHIVES
“EARLY ON, I USED TO THINK OF AUTISM AS NOT A GOOD THING BUT NOW I THINK OF IT AS A GIFT. AUTISM GIVES YOU A DIFFERENT PERSPECTIVE ON LIFE.”
Ryan, Mentor I CAN Network
2019
HUMANS ON THE AUTISM SPECTRUM – CHRIS, 31
I am an Autistic man who has always loved telling and collecting stories. I am married to Karen who makes me feel great to be me. I am Dad to George who is making me see everything anew. I talk and laugh loudly. I regularly “escape” to my obsessions and I love investing in people’s confidence, because it builds my own as well. I am also lucky to be the creator of the I CAN Network, which comes from a very personal place.
Growing up, I knew I was different. My brain had to work so hard to process things that most of the other kids did effortlessly. Some other things were incredibly easy for me – like spelling! When other kids were kicking a footy around at lunch, I was off dreaming up elaborate tales and learning big words.
Within the classroom, I was a rule follower who treated each school day like a performance. After “playing my part” each day, I would come home totally depleted, often not moving from the couch for hours. I needed regular days off from school to recharge. I had so much anxious energy that I tended to “awful-ise” things: whipping myself into a panicked state over unlikely events. The main person who told me I couldn’t do things was myself.
Thankfully, I had the unwavering support of my “personal I CAN Network” of key family members, close friends and one particularly extraordinary Year 7 advisor who believed in me and who encouraged me to hone in on my strengths and passions: my creativity, my gift with words, my love of fantasy and of historical figures. Whenever I could focus on those things, I would feel safer, more capable and more confident. This was an important lesson that has stayed with me over the years.
Embracing my Autistic identity took a much longer time to unfold. When I was growing up, the dominant storyline around Autism was extremely negative and overwhelmingly driven by people who weren’t Autistic. I didn’t have any reference points. For years, I viewed my diagnosis as something to keep secret because Autism wasn’t positive. It wasn’t until I was a young adult working in the youth advocacy space – hearing the stories of peers who also felt marginalised or misunderstood – that I started to realise that I had an opportunity and responsibility to make Autism positive.
Increasingly, I had a yearning to tell my story. So, on 9 July 2009, in a very public setting – a speech as Youth Representative to the UN at the UN Youth National Conference – I shared with the audience that I was Autistic. I wanted to bust some myths around Autism. In the years that followed, I had many more opportunities to tell my story and challenge the assumptions that people made about Autism. In June 2013, I delivered a TEDx presentation that helped set the stage for the launch of the I CAN Network later that same year.
The I CAN Network is so personal to me because it was inspired by all of the things that helped me when I was growing up: highlighting a person’s strengths, celebrating their passions and helping them identify people who make them feel safe and accepted. At the same time, we offer something that I never had when I was young, namely Autistic mentors and a sense of Autistic community. When you bring all of those elements together, the synergy is incredible! We now provide paid employment opportunities to 34 Autistics who help mentor more than 1000 Autistic young people each year through our school and community-based programs, online groups and weekend camps.
A core mission of the I CAN Network is to drive a rethink of Autism, not just with the young people we mentor but for broader society as well. Often, when young people are brand new to I CAN, they come to us with a sense of shame and stigma around being Autistic. They have internalised the negative perceptions of others. It is exhilarating to see the change that can happen over time when they are provided a safe space to be themselves.
I will never forget what I witnessed at Aquinas College in Victoria in Term 4, 2017. Four Autistic Aquinas students from our I CAN program addressed their classmates at a school-wide assembly. They shared their own stories and talked about their Autistic pride. You could feel a palpable mindset shift among the student body in that moment, and it has endured.
When I was growing up, collecting stories was a way I built my personality and gained confidence. I am proud that my personal story is part of the massive, diverse and ever-growing chorus of Autistic voices who are reframing the narrative on Autism. I also value those who support and amplify our voices. Together, we can change the world.
HUMANS ON THE AUTISM SPECTRUM – WENN, 67
I am a husband with an autistic wife, a parent of two autistic adult kids and a grandfather to three autistic granddaughters. I happen to be autistic, trans, a psychologist, lecturer, writer and poet.
Growing up, I wasn’t expected to learn and get an education beyond Year 10 at high school; today I have a PhD. I wasn’t expected to find work or build a successful career; today I hold a senior position with the South Australian government as part of their Education Department’s “Disability, Policy and Programs” Complex Needs team.
Although it’s different for each person, for me, my autism means I have unique strengths and challenges. I’m challenged with everyday things like social chit-chat, public transport and general organisational stuff. But my strengths with writing, researching and teaching give me “life” and a richness to my daily encounters that make it easier to accept my challenges.
I know I have limitations but these have stretchy edges to them. I accept support in many things, and I use it in positive ways to enable me, not keep me dependent. Learning how to be interdependent has been one of life’s biggest lessons for me. I’ve come to realise that it’s OK to need others and we can support one another with our differing abilities. If you took my autism away, my complete self would disappear! It’s being autistic, and older, that has given me my wings.
One of the most wonderful things about belonging to the autistic culture is together we are changing negative, stigmatising, societal ways and, as we do this, we help create new societal norms. We must be visible, out and proud! We have nothing to be ashamed of and no need to hide who we are. The more the world sees us and shares in our experiences, the better this world will be.
Likewise, it’s important to talk about autism in positive terms because being autistic is a positive thing. Autism enables us to think in the way we do, to notice important details others might miss. Without autism, we would lose many of our engineers, architects, scientists, flower arrangers, chefs, librarians, car detailers, and so on. The world needs us to give a balanced, unbiased perspective on so many things. If you rubbish autism, you rubbish the world.
One of the challenges society faces with regards to autism is the gap between intentions and active support. To facilitate active support, society needs an understanding of autism. For far too long, society has viewed autistic people as “defective, broken and disordered”, which in turn, has driven the type of “support” we’ve received. For instance, I believe many schools aim to be inclusive. Unfortunately, they often haven’t understood that to be inclusive isn’t just about having autistic students present at school, it’s about adopting an inclusive curriculum, timetable and social culture that works with an individual’s autism, rather than trying to make us fit the typical way of doing something. This understanding also applies for our work and social spaces.
As an organisation, the I CAN Network is vital to supporting and changing the cultural mentality from “everything autistics CAN’T do” to “all we CAN do”. It doesn’t say that we won’t have challenges or that we won’t get it wrong; it says, it’s OK to mess up, let’s learn from it and find ways that enable us each to be all we CAN be. The emphasis is upon building positive self-esteem, confidence and carrying this out together. We are not on our own and it’s great to be part of the I CAN team! Autism is all about being “wired differently” and I CAN teaches us that difference and variety bring life to our world.
Individuals reading our stories can learn from our experiences so they can be more open, accepting and accommodating of difference. In doing so, their lives and experiences can only be strengthened and enriched as well. A world that embraces autism is a more compassionate, more productive and more all-encompassing place where difference and diversity enhance social and cultural communication. This recipe for a wholesome world can only take humanity upwards and lead us to a place of less pain, less mental distress and towards the real meaning of mutuality and inclusion.
HUMANS ON THE AUTISM SPECTRUM – LUCY, 9
Being Autistic means that your brain thinks differently, and that you’re different. Different is a good thing! I love being Autistic because it makes me unique.
My Autistic brain is really good at LEGO. I like to build animals like cats, dogs, birds (especially mallard ducks – I build loads of those – you know, those ducks with the beautiful green heads), frogs, bears and rabbits. Once I’ve built them, I love breaking them apart and building them again and again. This feels good for my brain.
My memory is really good. Sometimes I remember things from a long time ago. My mum doesn’t remember them but I do. I’m awesome at that.
My amazing Autistic brain also has sensory sensitivities. I hate the noise of hand dryers. It is really horrible and feels like an overload on my ears.
I don’t like some smells either. My mum and dad used to buy this cheese that they loved called pecorino, and it’s really stinky. Whenever they opened the fridge the smell would waft everywhere. I didn’t like that! Some smells are good though. I have a sensory mint pot, where you can run your fingers through the mint and get some lovely smells. It’s a nice, happy feeling.
Sometimes my brain goes so fast and has lots of ideas going through it and that can be hard and stressing. I also really worry about people forcing me to make eye contact because it makes it harder for me to listen. I think this is the same for a lot of autistic people. And sometimes I need to fidget when I’m talking. I like to fidget with my hands and with soft toys. I also like moving my body. I like spinning. It makes me feel really good when I spin fast. I listen to my favourite songs when I spin. I don’t get dizzy easily. Spinning gives me lots of energy.
I have lots of special interests that make me happy. I love Apple products, especially the iPhone X because there is this “me emoji” thing where you can create an emoji of yourself and it does your facial expressions! I also love roses and animals, especially cats, dogs, ducks and kiwis! We have a cat called Humphrey and just adopted a new kitten named Claudia. I enjoy building things in Minecraft and watching “Stacey Plays” YouTube videos about Minecraft. I’m going to have a YouTube channel when I’m older. It’s going to be a gaming channel and a vlogging channel. I’m going to vlog about my daily life and Autism.
My Autistic friends also make me really happy. They understand me better. Most of my BFFs (best friends forever) are Autistic. We understand that we sometimes need space from each other, that we are all different and we are all amazing.
One really cool thing I get to do because I am Autistic is go to Yellow Ladybugs. Yellow Ladybugs is about supporting Autistic girls. My favourite thing about Yellow Ladybugs is seeing my friends and being with all the Autistic adults. My two BFFs there are Bella and Arabella. When I was too frightened to jump off the big platform at Bounce, my Yellow Ladybug friends helped me. They told me, “You can do it” – and I did! When I’m older I can’t wait to join the I CAN Network, especially their Harry Potter group. I’m a huge Potterhead!
My most special Autistic friend is Penny. She hates hand dryers just like me! She has them at her office. Her tablet has photos of all the different signs about high decibel hand dryers. Penny is an ambassador for Yellow Ladybugs and also helped create I CAN. Penny always wears her Yellow Ladybugs T-shirt and her I CAN hoodie. I met her at the very first Yellow Ladybugs event and we became friends. I love her because she’s so special. She is really good at talking to me about things. She helps me feel safe. Penny hates LED lights and wears a hoodie and a cap. I sometimes wear a cap because of lights and my “Eemees” (earmuffs) because of noise. Penny is really supportive of me, because she understands what it feels like to be Autistic. Everyone should have a friend like Penny!
(Words from conversations with Lucy, shared with her gracious permission)
HUMANS ON THE AUTISM SPECTRUM – JAMES, 31
I am a 31-year-old, one-time entomologist who now manages the Queensland branch of the I CAN Network. I’m also a tour guide in the Gold Coast hinterland and run environmental education sessions during the school holidays. In addition, I run a small woodwork shop and build fine furniture from recycled and reclaimed timber (see picture below). I lead a varied life.
At 17, when I had dropped out of high school after years of struggle, I couldn’t have imagined the life I am enjoying now. Back then, life at school seemed like a series of brick walls. I had high aptitude scores but performed poorly in most of my classes. Although there were some teachers who made accommodations for my differences, I felt lost in a system that rewarded a very narrow set of attributes. The deputy principal at my school told me that at the rate I was going, I would never graduate from high school or progress further in my education. “If you don’t learn how to manage your assignments now, how are you going to manage at university?”
I started to believe that I was not capable. It took more than six years from the time I dropped out of high school to find my way to university. My path included an unsuccessful attempt at TAFE and a much more favourable part-time experience, years later, at Open University to get my high school equivalency.
Once I got to university full-time, I thrived. Far from being totally unprepared, I fell right into the groove of things. I loved being able to study subjects that fascinated me and meeting other people who shared those same interests. And I had professors who loved teaching weird and quirky students because they themselves were weird and quirky, too.
One of the best parts of being a mentor is that I can be a source of encouragement for Autistic students who might be facing some of the same struggles I had in high school. To them, I’d like to say: life is waiting for you to live it. Pursue your interests passionately and eventually you’ll find people willing to share them with you. High school may feel like the whole universe but it is an unimaginably small slice of the human population and of life in general. Trust me. There’s way more out there than you can know.
To the caring parents and teachers who might be worried that their child or student isn’t meeting certain milestones, I would like to assure you that there is always another path to a fulfilled life. I am proof of that. Please also know that there can be a fine line between encouraging skill development and scaring an Autistic young person into thinking that they will never achieve a certain goal. When we hear, “If you don’t learn how to do this now, how will you ever survive (in high school/at uni/on your own)?”, we may begin to doubt our abilities. Just because we can’t do something now doesn’t mean that we won’t be able to achieve it in the future. And finally, please don’t be embarrassed by your own passions, no matter how “unusual”. When adults are enthusiastic about the things they love, it makes Autistic kids feel like it’s okay to do the same.
As a society, we need to flip the way we view Autism. Instead of always highlighting “deficits” and “costs”, we need to take a step back and recognise that Autism is really quite useful. Coming at things from a different direction allows Autistic people to find solutions to problems that others might miss. In ecology there is a concept called the diversity = strength hypothesis: that is, a really diverse ecosystem will have a lot of capacity to adapt to change. I think human ecosystems fit this model perfectly. The more diverse we are, the more opportunities we can seize as a society.
The truth is, there’s a lot that’s great about being Autistic: our focus, our drive, our willingness to walk a different path. It’s not just important for Autistic people that we’re accepted, it’s important for humanity. We only got to the moon because of Autistic people. And do you really believe that the first early human to pick up a rock, sharpen it, tie it to a stick and make an axe wasn’t Autistic, too? Diversity = strength.
HUMANS ON THE AUTISM SPECTRUM – AYESHA, 21
I am one of out five children and I am a mentor with the I CAN Network. I recently finished my university studies to work with young children, and someday I’d like to work in a kindergarten or childcare setting.
School was not always easy for me, especially since I am also dyslexic, but I did have some wonderful teachers who encouraged me. I didn’t know it at the time, but I was already preparing for the I CAN Network back then. Whenever someone would tell me that I couldn’t do something, it made me want to show them, Yes, I CAN! The only person who should say what I can and cannot do is me.
I am also an example of how someone can go from being a mentee in the I CAN Network to actually becoming a mentor. I was first introduced to I CAN by a teacher’s aide when I was in Year 12. Prior to I CAN, I had a small group of friends, but I didn’t always have an easy time socially. Growing up, I found a lot of the unwritten social rules to be confusing. How close should I stand? Should I be looking them in the eye? What should I talk about?
Although the thought of change and new places can make me uncomfortable, I soon found a safe place with I CAN. It felt good to be among people who really understood me, including many who shared some of my interests (art, reading Harry Potter, Percy Jackson, anime and overseas travel).
Being encouraged to develop from mentee to trainee mentor really gave a boost to my confidence. It signalled that other people recognised my leadership potential and how good I am with kids. One of my strengths is that I am open and naturally optimistic – I always see the light at the end of the tunnel. I see the good in people and I appreciate all of the things that make them unique.
There are a lot of rewarding things about being a mentor, most of all witnessing how our mentees can grow in confidence over time. I’ve seen mentees who have started our (school) sessions feeling quite disconnected and not being comfortable engaging with others. By the end of the program, they are taking part and having fun with their peers and with us mentors. We see that same magic happen at our camps, which is why I love them. It makes me feel proud that I can have a positive influence on our mentees, and that drives a lot of my confidence to try new things.
Before I joined I CAN, I didn’t really have any Autistic role models or Autistic peers. Now I am surrounded by a great community of friends and teammates from I CAN and beyond. One of my wishes for a more embracing society is one that appreciates just how different Autistic people are from each other. There’s this really unhelpful stereotype that all Autistic people are a certain way, and I can tell you that that is not true. When I look at my I CAN team, we all have vastly different personalities and profiles.
I’d also like to see society create more Autistic-friendly spaces where we can get a break or retreat for some quiet time. We often feel and perceive things more strongly than other people, and when we feel more comfortable in our surroundings, we are better able to show the world what we can do.
My involvement with the I CAN Network has taught me that it’s okay to be different. In fact, it’s more than okay; it’s a positive. How boring would our world be if we were all the same? I want to use my voice and my skills as a teacher to help create a world where we are all valued for being who we are.
HUMANS ON THE AUTISM SPECTRUM – ADAM, 36
I am an Autistic self-advocate, a lifelong Beatles fan, and the inspiration behind an Autism-related meme that has been shared all around the world. I am also a public servant within the Victorian government.
Earlier this week, I took my first trip to Canberra to present at Specialisterne’s event entitled “The Future of Employing Autism and Diversity”. That opportunity represents an exciting development in my Autism advocacy work, and I have to thank the I CAN Network for lighting that initial spark. I served as a mentor with the I CAN Network’s young adult camp in June 2017, and that marked a turning point for me. As a camp mentor, I felt incredibly fulfilled, and had a sense of purpose, as I guided young people out of their comfort zones and helped them develop their sense of self. I realised that I needed to use my voice and my experiences to help make our world more understanding and embracing of Autism.
I am particularly passionate about enlightening people about the value of Autistic talent in the workplace and dispelling the many myths and stereotypes that surround Autism – including the stereotype that all Autistic people must be maths savants or tech geniuses! Some of us are, although we are just as diverse as any other group of people. I’ve always been interested in English, creative writing and languages; prior to my current role, I taught English as a second language.
What I do have in common with so many other Autistic people is that I’ve been underestimated many times in my life. In high school, I was told by school careers counsellors, in no uncertain terms, that I would never finish Year 12. Not only did I pass with flying colours, despite their warning, I got into university and passed that with flying colours as well! I earned a bachelor’s degree, Honours and a Masters in Education – as well as my diagnosis!
I am one of eight people on the Autism Spectrum employed by the Victorian government via a cooperative project between Specialisterne and the Department of Health and Human Services called the RISE program. Landing this position was unlike any other job interview process I had ever experienced. Instead of a long series of face-to-face interviews, I took part with other candidates in a three-week training workshop. We were put into teams to solve various challenges – there was lots of LEGO involved – and the process was very transparent.
Companies and organisations that seek out Autistic talent appreciate the benefits of having a neurodiverse workforce. Autism is a different processing system, not a disorder, and when we harness the capabilities of Autistic people, we can change the world for the better. Autism can enable one to hyperfocus on tasks and interests and find solutions to problems that other people might miss. Autism can make one particularly honest, transparent and conscientious. I know these are qualities that I bring to my workplace every single day.
While I think there is still a long way to go until we become a truly inclusive society, I’ve seen things improve over the past 20 years since I was in high school. I feel that awareness and more importantly, acceptance of Autism is growing each year, thanks to companies like Specialisterne and organisations like the I CAN Network – something I couldn’t have even dreamed of as a young person! Those adolescent years are difficult ones for many people, but can be especially challenging for those of us on the Autism Spectrum. I CAN is doing great work to empower these kids with the support, strength and confidence to emerge as future leaders, thinkers and achievers.
I am also energised by the number and diversity of my fellow advocates who are taking control of the narrative on Autism and by the allies who support our voices. We’re all in this together; we all advocate in our own way.
My Autism journey has been an interesting one. I was diagnosed quite late, relatively speaking, at the age of 24, so I didn’t have all the supports as a teen. Nonetheless I have achieved amazing things in my own time. Life now, as a public servant and advocate, is more intriguing than it has ever been before! I encourage people reading my story to get involved. Consider what issues you’re passionate about and let that drive your advocacy. Get involved in the Autism community. Be a mentor. Be a blogger. Speaker. Amplify Autistic voices. Whatever tickles your fancy. Since diving into the world of advocacy head first, I have felt very fulfilled. I’d like to think that I am making a lasting impact on society by changing the perceptions of Autism for the better.
HUMANS ON THE AUTISM SPECTRUM – RYAN, 17
I’m 17 years old and proud to be Autistic. I enjoy playing computer games and hanging out with my friends. I eventually want to open a gaming store.
I am currently studying to complete Year 12 VCAL (Victorian Certificate of Applied Learning). I am also training to be a volunteer firefighter with the CFA (Country Fire Authority). I have completed two seasons with the Urban Junior Fire Fighters competitions in the junior section and am looking forward to moving up to the senior section next season. I was previously involved with Scouts as well. Along with all of that, I am a trainee mentor with the I CAN Network, after having been a mentee at my school.
It’s really important to see Autism in a positive way because Autism is actually an amazing thing. Autistic people add so much to the community and we all have strengths. My Autism helps me concentrate on information better and recognise patterns and details that most other people don’t see. I pick up on things more easily in Maths all the time! I am also a hands-on learner. When I have a chance to get actively engaged in something, I am that much quicker.
Being involved in I CAN has changed the way I view Autism. It’s no longer something to be frightened of or something that I feel like I need to keep secret. Early on, I didn’t think of Autism as a good thing. But now I think of it as a gift. Autism gives you a different perspective on life. That’s what I wish I could go back and tell my ten-year-old self. As a trainee mentor, I now have the chance to help the younger generation understand that Autism is not a scary thing and I can encourage them to identify their own strengths that come from being Autistic.
I CAN gives Autism a friendly name and helps people develop confidence and pride in being Autistic. For me, I’ve gained an appreciation of why I do certain things and I’ve also realised that I am not alone. There are so many Autistic people who can relate to my experiences, and when we share the things each of us has been through, we can support each other. Through I CAN, I’ve gained confidence in speaking out about Autism to the wider community.
Unlike many people, I haven’t been in a position of being told that I can’t do something because of my Autism. My parents have always said I might need to do things slightly differently to get to the final outcome, but there isn’t anything stopping me other than myself. I’m lucky to have that sort of encouragement. In addition to my parents, my “personal I CAN Network” includes my good friends and two teachers at school, Sue and Jane, who have been really helpful over the years. Sue has been with me since primary school; she was the first person who saw me as I am. Jane has supported me since Year 7. Everyone deserves to have people who believe in them and give them strength to try new things.
I believe schools and the broader community are slowly becoming more inclusive of Autism, but we still have work to do. We need more people to talk about Autism in a positive way so that Autistics feel a part of the community and not ashamed of who we are or easy targets for bullies. If you are reading my story, there are lots of ways you can help an Autistic person feel proud of who they are. You can share something positive about Autism. You can even share my story! Or just give a helping hand. A world that truly embraces Autism would be a more welcoming place to live in – and a much livelier one, too!
HUMANS ON THE AUTISM SPECTRUM – TIM, 24
I am a 24-year-old Chinese Australian, diagnosed with autism at three years old, and have been non-speaking after 14 months of age. After intensive extension of my limited skills and picking up a means of communication via partner-assisted typing at nine years old, I became opened to the possibility of connecting with people and with the life I would like to live. I have kept working on understanding how my challenges can be transformed into capacity and strengths.
This journey has been supported and scaffolded by my social network, especially my mum who has been with me every step of the way. Some of the highlights of this journey include graduating from mainstream schools to study at university, giving a TED Talk when I was 18, presumably the first by a non-speaking person with severe autism, and presenting at forums and conferences, both local and international. I have the greatest respect and time for organisations that advocate for autism, including the I CAN Network, Communication Rights Australia and Children and Young People with Disability. I am excited to be part of the self-advocacy movement to drive autism to a new level of relevance and inclusion.
Over the years, I have learned to see Autism not as a disorder but another way of being in the world. Although the effects of autism on me can be debilitating, seeing the world with different eyes and in different ways more than compensate. In acknowledging that I function differently in mind and body, I am able to find the confidence and impetus to use my strengths towards connecting and engagement with the world. For instance, I am a visual thinker and everything comes into my head as pictures. It was not until four years of age that I discovered that people use speech to communicate. With this realisation, I have worked hard to learn to use language and to communicate by typing with support. Another example, because of hypersensitivity, I am quite resourceful in finding ways to manage constant sensory discomfort and overload. On the other hand, I can see things that people may miss because of my heightened sensory and other processing ability. I am good with details and working at putting things together in a big picture. From this unique perspective, I find that I can make contributions in my own ways. I have just completed a book on my journey with autism, entitled Back from the Brink, and sharing my story is one of the ways that I feel can increase the level of understanding and acceptance of Autism.
I would like to tell my younger self, don’t be too worried about what people think. Although it can be tough when people walk away without acknowledging you, it is important to be in touch with who you are. Don’t be ashamed of yourself, the parts of you that you wish never existed may give you some of the greatest moments of joy and satisfaction. For instance, after coming to terms with my differences, writing up the story of my life and sharing this with others is one of the most rewarding things I have ever done. Don’t hide yourself away, but keep working at finding your tribe and your niche.
HUMANS ON THE AUTISM SPECTRUM – DANIELLE, 40
I am a creative, philosophical and deeply spiritual Autistic woman who has come to an understanding of my Autism later in life. I am the proud mum to two amazing Autistic young people and three fur babies. I am very fortunate to also have a very special person in my life who makes me laugh and feel loved.
As a passionate educator, I’ve had the privilege of teaching teenagers for the past ten years. I love any opportunity that allows me to support families whilst leveraging my own lived experience of being Autistic. Historically, our voices have not been present in discussions on how to best meet Autistic support needs, but this is changing as more and more organisations recognise the immense value of our perspectives and experiences. I am very interested in, and have tremendous respect for, Autistic-led research and Autistic-led program planning.
My ten-year-old daughter told me that to her Autism means that we are “limited edition” – and there are special aspects of Autism that the others in the collection would really like to have! I identify with a strongly positive and strengths-based understanding of my Autism, whilst acknowledging that like anything that falls outside the norm, we may need to have our own “care manual” to maintain ourselves and show others what type of care we need.
I continue to use my voice to create a world that is more embracing of Autism, especially in two arenas that I hold dear: inclusive education and the health of Autistic women.
Professionally, I am working with inclusion policy on a day-to-day basis, and I often observe a gap between inclusion policy and inclusion practice in school settings. There are many reasons why this is happening, but the consequences for our Autistic students and their families are very serious. As we strive for inclusive education – including the determination of what reasonable adjustments are necessary to support Autistic students – it is so important that our Autistic voices be at the centre of the decision-making process. We know our needs best and when given the appropriate support, resources and opportunity, we can tell people exactly what we need. When our Autistic needs are respected, our diverse strengths can shine and often this is when young Autistics can find their future vocation area.
After my Autism diagnosis, I began to learn that late-diagnosed women are at a tremendous disadvantage with regards to our health and wellbeing. New research has uncovered what so many of us have experienced: that in our communication with health professionals, our voices are often misunderstood and misrepresented and our gender-specific Autistic traits are incorrectly perceived as solely related to mental health issues. This means that we are either significantly delayed in getting the correct help for our health needs, or sometimes we don’t get help at all. I want to continue to use my voice to change that, especially since recently being diagnosed with Ehlers-Danlos Syndrome and Dysautonomia.
The I CAN Network has been so important in my understanding of my Autism. In the initial months after my diagnosis I was feeling a real unease and disconnect between my own positive views of my Autism and what our society says about Autism. When I heard Chris Varney’s message, though, I could recognise for the first time that here was someone else on the Autism Spectrum with whom I can identify – it felt safe and authentic. By gosh, we really need that! The I CAN Network is an integral organisation for the wellbeing of our Autistic community. I am proud to be involved both as a mentor and a speaker; we have a lot of work to do to change the way society views Autism.
It still surprises me how many people either describe or strongly imply that Autism is a terrible affliction that should be prevented and/or “cured”. I’m not suggesting there isn’t suffering, but in my experience, the suffering is caused by the lack of understanding in our society and co-existing conditions, not by Autism itself. There are compelling reasons why we need to talk about Autism in a positive way. For those of us who were diagnosed late, we need to discover what our Autism means for us and not what we may have understood about Autism prior to our diagnosis. For our young people being introduced to their diagnosis, we want to set a stage that allows them to embrace their Autistic traits unreservedly. There is nothing to be ashamed about, nothing to fear either – and Autistic adults really need to light the path for future generations. Without authentic self-identity there can be no real self-esteem. So I encourage young people to embrace ALL of their Autistic traits through an extremely positive and kind lens and from there we can build on experiences that bring hope and joy into our lives. We deserve nothing less!
HUMANS ON THE AUTISM SPECTRUM – JAKE, 15
My name is Jake; I am currently 15 years old and in Year 10. I was diagnosed at around the age of ten. I am interested in many things, such as LEGO, sci-fi, TV, movies, games, comics and even books at times, surprisingly!
I feel that Autism has given me abilities and ideas that a normal brain would not understand. My strengths are my determination and my desire to do things in my own way. But, as every person with Autism would understand, it can also come with great challenges. A person on the spectrum can have amazing talents in one or more areas, but then things that seem simple for everyone else – like attempting to read other people’s emotions or, in my case, learning another language – can be an uphill battle.
I was introduced to the I CAN Network through my school when I was in Year 7, and signed up straightaway. Being a part of I CAN has opened me to experiences and challenges I would not have had otherwise. I have also met many great people on the spectrum who I can share my passions with and who understand me in a way that others can’t.
I’m not really good with inspirational stuff, so I hope that’s not what you are expecting! I am told that I have a unique sense of humour. I am a bit of a joker and like to do things for a laugh, like running around the estate where I live in a leprechaun outfit on St Patrick’s Day. (I am half Irish.) I am also a massive Monty Python fan.
Monty Python’s Life of Brian is the funniest Monty Python film. I like the fact that they just go “all out” with it. I like their impersonations. My whole family enjoys acting out Monty Python skits at home. My parents grew up with Monty Python, and we are always sharing different references. If you need an education on Monty Python, you should start with Holy Grail and then go with Life of Brian.
Just the other day, someone asked me what I thought about the ridiculous myth that Autistic people don’t “get” humour. Autistics are actually very humorous. From my experience, a lot of Autistic kids just tend to have more adult senses of humour, and it usually takes a while for the rest of the world to catch up! Back in Year 8, no one got my jokes because they hadn’t seen Monty Python. So, I told them all to watch the three movies, which they did and all of a sudden, they got every joke I made.
The current school I go to is fantastic and does a lot to help kids with Autism. At secondary school, everyone appreciates my sense of humour much more than they did at primary school. My teachers have adult conversations with me about my humour. The first primary school I went to was terrible! If you did not behave like the other children, you were treated like you were a bad kid and were kicked out of class regularly. The teachers did not understand me at all and made no attempt to integrate kids on the spectrum into the class. I am much happier in secondary school – except for the fact that there’s a lot of homework!
What I’d like the world to know about Autism is that we aren’t freaks; we are just weird in a different way. I don’t have time for people who won’t accept me for who I am. I ignore them. My understanding of Autism has always been positive because my mum is a nurse and explained it to me in a way I could process when I was diagnosed. Mum has always taught me to see my Autism as a gift and not a bad thing.
I CAN has given me the confidence to overcome some of my fears, like public speaking. My mum tells me that I underestimate how much I have achieved with my public speaking. I didn’t like public speaking in the beginning, but now I do. I think the shift happened in Year 9 when I did a speech in my classroom and actually enjoyed it. It was a presentation task on a debating question on “Should we ban animal testing?” I don’t do inspirational speeches well, but it turns out that I am a good debater. I have a natural ability to speak that I didn’t know I had. Everything just takes practice.
HUMANS ON THE AUTISM SPECTRUM – JORDAN, 11
My name is Jordan, and I’m nearly 12 years old. I’m in seventh grade and I love high school. I live on the South Coast of New South Wales on three and a half acres. I have two dogs, Snoopy and Sprinkles, who bring joy to my world. They’re both staffies and I consider them to be my best friends. One of my favourite pastimes is writing, whether it be a piece like this or an imaginative story. I would like to go to university and become a writer. I love listening to music, particularly rock, and collecting memes.
It actually took me a while to embrace what Autism is and what it means to be Autistic. For a long time, I was in a love-hate relationship with my Autism. I didn’t relate to neurotypical kids, yet I struggled to feel at home with Autistic kids. I was “stereotypically Autistic” enough for some to realise that I had Autism, but I was also “normal appearing” enough for other people to be shocked whenever I revealed that I was Autistic. It was so hard to tell people I was Autistic before I joined the I CAN Network, due to the overwhelming amount of negative connotations others had about Autism.
When I first got involved in the I CAN Network through online mentoring, I had little idea what it was, to be honest. My mother signed me up and I just went along with it, not knowing that it was going to change my life. I CAN is so vital to rural and remote communities to connect Autistic kids so they can find their people. I soon learnt that a) I had far more in common with my Autistic peers than I had first thought and b) you should not let someone else’s negative opinion of Autism define you. These are principles I will hold close for the rest of my life.
Because of I CAN, I not only developed courage in my identity as a “Human on the Autism Spectrum”, but I found my place in the Autistic community. Now I am comfortable in telling other people that I am Autistic, and explaining Autism to those who have never heard of it before. I have also met some of the most influential, world-changing people in my life due to I CAN, and made friendships that will last a lifetime.
When I started participating in I CAN, my mentors were Carla and Chris. I have also been mentored by Max and Lochie. They have all opened up my mind and allowed me to see past the challenges of being Autistic, and I’ve learnt that despite the downsides, Autism is so beneficial. Without my Autism, I wouldn’t be who I am today. Autism has shaped me, got me through the toughest times of my life, tested me, and ultimately made me a stronger, wiser person. Thanks, Autism. My younger self might have felt that you dragged me down, but now I know that you weren’t the one dragging me down. My misconceptions about you and the lies others told me were what brought me down. You were building me up.
HUMANS ON THE AUTISM SPECTRUM – BEN, 33
I’m 33, I just got my own apartment in a Melbourne suburb and work for the AFL Umpiring department. I love sport, especially AFL/VFL, cricket, netball and horse racing, which led me to study journalism at university. Other hobbies of mine include reading and writing – further reasons why I studied journalism. I have covered a range of sports for both print and online publications, and I have also worked in the media departments of both Netball Australia and Moonee Valley Racing Club. I was diagnosed at age ten, back in the 1990s, when Autism wasn’t really discussed much or understood that well.
My strengths are social/professional networking, remembering facts and figures and not being afraid to approach anyone. What makes me unique is my sense of style, and I love being well dressed, especially when I am out with friends. At the same time, I am enjoying living on my own and not having to share my space with anyone, although I don’t mind being with other people in some settings.
There is a myth that Autistic people don’t like to socialise, which is not true for me personally or for a lot of my friends. We simply like to socialise in environments that we are comfortable with. For some people, that might be a small group or online; for me, it’s nightclub, pub and bar settings. I love music, I love dancing, I love a few drinks, and for as long as I can remember, I have enjoyed meeting new people and hearing their stories. Rather than getting sensory overload, I get energised. The fact that I enjoy socialising in this way often leads people who don’t know me well to assume that I couldn’t possibly be Autistic. I wish the world understood how diverse we are as a group.
I didn’t always feel as comfortable with my peers, particularly when I was growing up. I was targeted by bullies for virtually all of primary school and well into high school. It was really hard, but as I became more self-aware and more accepting of myself, things started to improve. By Year 9, many kids started to realise, “Hey, this guy might do things differently or interact differently, but he’s actually all right.” I wish I could tell my ten-year-old self it does get better, and that’s what I tell younger Autistic kids now at my speaking engagements or when I mentor them. You will continue to become more self-aware and more comfortable with who you are, and there will be people who will like you for who you are, I promise.
I feel very strongly about promoting positive messages and accurate information about Autism. The negative comments and misconceptions – whether they come from someone famous or someone in your peer group – can really hurt, especially for those kids who are already having a hard time in their school environments. I admire self-advocates, including several of my friends from I CAN, who are working hard to change the way society views Autism. I CAN as an organisation is important because it shows what people on the Autism Spectrum can do and this helps to break down the negative stigma and inaccurate stereotypes that tend to surround Autism. For me personally, it was a great boost to my self-confidence when I first got involved and realised that I could make a difference in how Autistic young people see themselves.
My advice to anyone who wants to help make our world a more inclusive one is this: don’t judge or treat someone negatively because they have a disability, including Autism. Throw away any assumptions about Autistic people and look at each individual as someone with skills, talents and interests, just like everyone else. Be prepared to make reasonable adjustments for those of us with Autism so we can fully participate in school, workplaces and the community. I appreciate the efforts that a lot of sporting organisations are making to create inclusive teams and facilities. Finally, take some initiative in learning more about Autism – read, read, read! – especially things by Autistic people and allies who do amazing work. (I am a big fan of Steve Silberman.) It’s been more than 20 years since my own diagnosis. In that time, I’ve seen a lot of positive changes that give me hope for the future, but I still think we can do better.
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.
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.
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.
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 – 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 – 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 – 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 – 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 – 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 – 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 – 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 – AJ, 14
I am AJ and I am 14 years old. I like public transport (buses, trains and trams), learning about the environment, and coming up with ways to stop bullying.
Autism is a different operating system and Autistic people process things differently. Autism helps me with my memory. I can remember things really well. I can remember all types of buses and where they go. I started getting into buses when I moved to Albury Wodonga. I am fascinated by buses and bus routes because the branding of buses is so unique. Dysons bus service in Wodonga allows me to visit their depot frequently and the drivers also know me very well. I’ve been helping my sister Cassie, who is 11, take the bus home. Cassie and I are the only ones in our family who catch buses.
What makes a good bus system is whether everyone can access the network. People don’t catch buses when a system is not properly organised, including when buses are not frequent enough or when there is congestion. Currently, only three quarters of the people in Albury Wodonga can access the bus network. I want to see this level increase to include everyone. I have talked to Dysons’ drivers about creating a new bus route. I even made them a map of what a new bus network could look like. The drivers were impressed. I am going to share it with the company once I finish the network map. I will show it to Martin’s (bus company) as well. So far I have finished the first stage of the network and I am almost up to the second stage.
I’ve actually been in the newspaper, which got everyone in my community excited about my bus network. It could help build up the population of Albury Wodonga even more because of jobs created. I have lots of people cheering me on because I’m unique. My strengths include remembering stuff really well, friendliness, good manners and problem solving when it comes to stopping negative behaviour. Recently there was a severe bully who was nasty to multiple students, and I was one of his targets. I came up with a 5-step strategy to deal with future offenders, with repeat offenders starting from step 2 onwards.
When people say negative things about Autism, it can really hurt and offend someone. It’s important to choose words carefully. Programs like I CAN Network were made to help people. I like being a part of the I CAN Network because I’ve met new people and have learnt new things. What I’d like to say to younger Autistic kids is: “You are not alone. You can do anything regardless of who you are and you can help make changes to our world.” A world that embraces Autism would be like a pizza with a good mix of toppings (people fully included in the group). Everyone can be different, not just those with Autism, and that’s a great thing!
HUMANS ON THE AUTISM SPECTRUM – KATE, 40
My name is Kate, and I am a proud member of an Autistic family. My two children are Autistic, I am married to an Autistic man, and I was recently diagnosed myself, having recognised so much of my younger self in my children.
I don’t consider Autism a disorder. It’s a different way of experiencing the world. As an advocate, I am trying to drive the narrative for Autism acceptance and promoting authentic Autistic living; that is, being one’s true Autistic self.
As I’ve reflected upon and unpacked a lot of my childhood difficulties, I can see that they were related to being Autistic and completely misunderstood. When I was growing up, most of my teachers told me I was lazy, stupid and clumsy. I struggled to read and write and never understood academic work at school. As a result, I always had a sense that I was not intelligent and not able to tackle academics. This feeling stopped me from doing college courses and pursuing my career aspirations. I wish I could go back in time and tell my younger self, “Understand that school work is difficult not because you’re lazy or stupid as teachers often told you, it’s because you can’t learn in a standardised way. Love yourself more, be kinder to yourself and know you will find your way. Don’t ever give up on your dreams!”
Now at age 40, after finding my authentic Autistic self, I am studying a degree in psychology and counselling. Ultimately, I would like to complete my degree then move forward to further academic development, which will lead me into the specialty of Autistic females.
I am never going to experience the world as a neurotypical person, so I don’t use neurotypical social norms as guidance in my life. That would just be setting myself up to fail. Instead, I set my goals and aspirations around developing my authentic Autistic identity and being the best Autistic person I can be.
One of my strengths is that I am highly focused and totally devoted to fulfilling my goals. Over the past few years, my passion has led me to create a blog and form multiple social media platforms, including a very active Facebook page called Girls Autistic Journey-Non binary Acceptance. I am UK-based but still feel a strong connection to the I CAN Network’s mission, especially around I CAN’s mentoring and positive development for schools.
Often, the media will portray Autistic people in such a stereotypical way that people truly believe that that’s how most Autistic people are. When I am faced with negativity or misconceptions around being Autistic, which happens in real life and certainly happens online, I try to gently educate by sharing credible information and lived experiences. Thankfully, I find that most people are open to learning and understanding, though there will always be those who I cannot reach or help because they are so far down the dark hole of misinformation and fear.
I believe that positivity around Autism builds acceptance for future generations of Autistic people. We have so many wonderful qualities that deserve to be recognised and celebrated: deep focus, unique perspectives, trustworthiness and reliability, high integrity, creativity, ability to retain information, ability to maintain routines, consistency, just to name a few. By highlighting these strengths, rather than the list of so-called defects, we can help to break down stigmas and false information about being Autistic. Likewise, when Autistic young people have mentors who are positive and full of understanding, it signals to them from an early age that they are an important part of the next generation of Autistic voices. Mentors provide hopes and dreams for our Autistic children, as they are able to show them, “Look, we are Autistic, and it’s all okay!”
Everyone wants to live a life that feels right for one’s self, without fear of being ridiculed or judged or excluded by others. I think we still have a long way to go to reach a point of an inclusive society, where Autistic people don’t feel forced to mask or apologise for who we are. I dream of a world that is equal, fair and can unlock all of the wonders that Autistic people hold inside, and that’s what motivates me to keep doing my work. What is everyone waiting for?!
HUMANS ON THE AUTISM SPECTRUM – CLAY, 17
I am 17 and proudly Autistic. I am in Year 12 and have my own business with three employees. My passion is motorsports, and I can remember all the results from every race in the past ten years. This year is very busy with school, work, friends and my Year 12 formal coming up.
Things haven’t always been this good. I was targeted by bullies, I had trouble finding a job and I didn’t feel proud about being Autistic.
After going to an I CAN camp last year, positive things really started happening. The I CAN camp opened my eyes about Autism and it was where I found my tribe. It was nice meeting so many people like me and learning from mentors like Chris, Daniel and others. I CAN camp helped me embrace being Autistic rather than seeing it as something negative. I now choose to be very open about who I am.
I have a lot of strengths. My mum calls me “Google Maps” because I can remember every single place I’ve been. I have a great personal I CAN Network around me, including my friends, my girlfriend and my family.
I don’t think that society is truly inclusive yet, and I am starting to speak up about this more and more. When I was looking for after-school work, no one would hire me. They actually did me a favour, though, because I am now self-employed and preparing for world domination! My business, Clay’s Bin Cleaning, has so many customers that I’ve had to add more employees.
Over the past year, my business has attracted a lot of attention in the media. It’s pretty amazing being in the news, and I feel a bit like a famous person. I really hope that my story encourages more Autistic people to start their own businesses.
There are a lot of messages I would like the world to hear. The first is that it’s very important for people to talk positively about Autism because we are not burdens on society. We have so much to offer. Our different way of thinking is the reason we have the internet and SpongeBob SquarePants and so many other wonderful, innovative things. Also, please don’t limit us because we are Autistic. Instead of saying someone can’t drive a car, say that they can’t drive a car yet. We are always changing and learning. We have the capacity to achieve great things. Oh, and my mum would tell everyone to read NeuroTribes!
It makes me happy that my story can help other Autistic kids and teens. My advice to all of you would be: never stop believing in yourself and surround yourself with people who believe in you!
HUMANS ON THE AUTISM SPECTRUM – REBECCA, 29
I’m a passionate Potterhead (sorted into the Hogwarts house of Ravenclaw on Pottermore) with a truly unforgettable brain. Literally. Not only am I Autistic, I also have an extremely rare kind of memory called HSAM (Highly Superior Autobiographical Memory). HSAM makes me unable to forget any day of my life. I was diagnosed with HSAM by neuropsychologists from the University of California, Irvine after two years of thorough tests and brain scans.
Since the age of nine I’ve been a huge fan of the Harry Potter series. Recess time at school was always difficult for me, and my teacher suggested that I read Harry Potter and the Philosopher’s Stone, which had recently been published. I was reluctant to veer from my preferred reading of atlases and other reference books, but once I entered that magical world, it immediately felt like a form of escape. Twenty years later it still feels the same way! I also learned a lot about social skills through Harry Potter by noting how he interacted with others, resolved conflict and even managed his homework!
I received my Autism diagnosis as a fifteen-year-old, and although I wasn’t surprised in the slightest, it was still a tough time for me. I had missed out on a lot of much-needed support and understanding at school that comes with a diagnosis and that negatively affected my post-school qualifications. Yet once I graduated from high school, I did my best with my therapies and giving myself my own catch-up lessons.
Blogging and public speaking – which I found so much easier than more personal and unpredictable one-on-one speaking – became a way to tell my story and connect with others. As with my love of Harry Potter, my passion for sharing my story continues to this day. It gives me a sense of pride knowing I can provide motivational support to others while also helping people understand Autism better.
I am constantly proving people wrong, especially when they have low expectations of me. For instance, two years ago I entered a local Toastmasters speech competition. After the rehearsal, another member of my club took me aside and said that due to my Autism, communication and cognitive difficulties I would never be able to win a competition – but that the losses might be a good learning opportunity for future speeches. Imagine that person’s surprise when I ended up with first place! Saturday, 28 October 2017 was a great day.
It’s very important for people to talk about Autism in a positive light because that helps those of us on the spectrum feel more accepting of who we are. The I CAN Network is fabulous because our core purpose is to focus on what Autistic people CAN do instead of on our difficulties. Since I joined the I CAN Network as a speaker/mentor in March of 2017, my life and confidence have changed immensely. For years, I had been struggling to find work and that really affected how I saw myself. When I discovered the I CAN Network, it was such a blessing. Firstly, I was so happy that I could say to everyone, “I’m employed!” However, perhaps the greatest benefit of all was being able to connect with other people like me, learn from them and give advice of my own in an environment where I fit in so easily. I’ve made some wonderful new friends and my social circle has branched out considerably.
Due to HSAM, I remember and relive my past from various ages constantly, so there are many things that I would love to tell my younger self. Most importantly, I would tell her that life gets so much easier when you enter adulthood. Once we complete our education at school, we’re able to take a path that is much more our own. Life too isn’t linear; just because one thing doesn’t work out it doesn’t mean that we won’t achieve what we desire in another way in the future. Also, we grow and even mature through our life experiences. Often what we truly desire will change slightly over time.
I can remember nearly every past day of my life, but if I had the ability to look into the future, I would like to see a world that truly embraces Autism. For me, that vision would be a world in which Autism is viewed as a normal part of life and that every human on the Autism Spectrum would be viewed as different, not less. Whether we are wizards, muggles or anything in between, everyone should be valued as important members of this world and every person should be accepted as equals.
HUMANS ON THE AUTISM SPECTRUM – KYAL, 22
I’m Kyal. I’m Autistic, dyslexic and for the past three years, I have mentored hundreds of Autistic students through the I CAN Network. I am also a huge history buff. I love contemplating things like “Why did the Roman Empire fall?” and what we can learn from that period in time. Even though school was not easy for me, I’ve always had the hunger to learn more.
My own personal history includes a really dark period. For most of my school years, I was totally misunderstood inside the classroom – my teachers simply believed that “Kyle needs more discipline” – and I suffered social abuse and violence at the hands of my peers. I was very angry and filled with self-doubt.
There’s a lot of garbage floating around about Autism, and garbage is what sticks unless someone offers a more accurate and compelling view. It’s really important that people – especially Autistic young people – see examples of self-pride, confidence and success. If we don’t know what these things look like, it’s hard to know how to get there.
A big turning point came when my mum helped me transfer schools to a place where negativity wasn’t accepted, the amazing staff believed in me, and the bullying stopped. I got involved in drama and video production, which helped me start to move outside my negative headspace, see that I was good at something and that I was worthy of having friends.
The other big turning point in my personal history was getting connected with the I CAN Network in 2016. I often tell people that “I CAN gave me my ‘me’ back.” At I CAN, we prove that Autistics CAN run the business, CAN influence the education system, CAN be great communicators, CAN make an impact on how young people see themselves and CAN change the way society views Autism.
If I could go back in time and tell my younger self something, it would be “You are going to be OK. You are going to find a place where you feel safe.” My personal I CAN Network – my mum, my partner, my grandparents, my I CAN teammates and of course my mentees – makes me feel safe and continues to give me the confidence to take on life.
When I was younger, I didn’t see any benefit in being different. Now I see Autism as a strength, especially when society is willing to make adjustments to support us. My world is noisy and vibrant, and I can’t imagine being any other way. If someone offered me a magic pill to make me “normal”, I would tell them where they could stick it! Many of the greatest innovations and creations in our history have been shaped by Autistics. But even if we aren’t the next Leonardo da Vinci, we all have something unique to contribute. Our world would be much duller without Autism!
For anyone who wants to help make our world better for Autistics, here is my advice: seek out primary sources, just as you would if you were studying history. When it comes to Autism, the primary sources are people who are Autistic. Get in touch with I CAN, follow Autistic bloggers, connect with Autistics in your community. Ask questions, keep asking questions, challenge the stereotypes, move outside your comfort zone, learn more so that you will know and understand more. We’re all in this together, and we still have work to do to make our world more inclusive.
When I think about what a world that embraces Autism would look like, I can’t help but consider it in terms of history. My greatest wish is that someday soon, when I am telling my mentees about my experiences growing up, they will have no point of reference. I hope they will say, “Wow, Kyal, you must have grown up in the Dark Ages”, because things like low expectations, bullying and negativity surrounding Autism will be totally extinct.
HUMANS ON THE AUTISM SPECTRUM – SHADIA, 18
I am a proud non-binary Autistic advocate. I am the founder and owner of my own business, and enjoy presenting and mentoring. I am currently studying a Bachelor of Speech Pathology with the hope of providing animal-assisted therapy for Neurodivergent individuals. I have a very special connection with animals. I have always been drawn to them and relate to them more strongly than humans.
Autism is my life. Autism makes up who I am and so many of my friends and loved ones. Autism has gifted me with greater connectedness to the world around me and a voice for animals and others like me. Whilst there are challenges that come with this, ultimately my sensitivities give me unique insights on life that I have been able to turn into my strengths.
I am very lucky to have a huge support network, which includes the mentors and friendships I have made through the I CAN Network. Autistic mentors have been so important in helping me see my potential and worth and in making me feel less abnormal and alone. I have an amazing mother who continues to support me and advocate for me in those moments when I cannot, and encourages me to stand up for my rights and follow my dreams. My grandfather has helped me learn to believe in myself and was my main inspiration for becoming an Autistic advocate. I also have a pretty eclectic and wonderful friendship circle, full of outcasts, Neurodivergent individuals, and the occasional Neurotypical.
I gravitate towards those who embrace who I am and who listen to our tribe and our voices. I surround myself with positive like-minded people and try to contribute what I can. I hope that this will create a flow-on effect and reach the right people. I share I CAN’s belief that a better world is possible and achievable, but I also think society still has a long way to go before it is truly inclusive of Autistics.
I believe most people are aware of Autism, but the question is, do they understand it, and, most important of all, do they accept it? Ironically, despite some claims that Autistics are not very empathetic, I believe society at large should try more to put themselves in our shoes and understand what it feels like to be in an oftentimes noisy and overwhelming world. We only have to look at the low employment rates of Autistic people to see that there needs to be more understanding of our strengths as well as our difficulties, and how valuable we can be if we are included in the workplace environment.
If I could give my younger self – and all Autistic young people out there – one piece of advice, it would be: love yourself. Self-acceptance and self-love are some of the most vital things to develop. As Autistics, we are going to face challenges, often significant ones, but if we believe in ourselves and our self-worth, we can achieve truly great things. Sometimes life is painful, but life can also be rewarding and exciting.
For parents, teachers and other influential people in our lives, my message is this: it’s really important to highlight our strengths and give hope to us Autistic young people. Demonstrating the positive aspects of Autism helps us accept and love our Autism and have a positive Autistic identity. This is vital for our mental health. We already know how we struggle, so it is far more helpful to show where we can succeed and what ways we can contribute to society.
And lastly, if I could deliver one take-home message to the world: Please listen. We all have our individual perspectives of Autism, and there is often a lot more that occurs under the surface. We want to be heard. We want to be loved. We want to and deserve to be included. Every step is a step, great or small. This could be as simple as allowing us to use technology in the classroom, providing sensory spaces, or working out what mode of communication suits us best. You find us in all walks of life and at all ages – we are students, artists, scientists, teachers, parents, and more. Please listen to our voices.
HUMANS ON THE AUTISM SPECTRUM – LIJY, 7
Kristy, Lijy’s Mum: Everyone communicates. In raising Lijy, I’ve really come to appreciate that there is so much more to communication than spoken words. Lijy has a gift of warmth and love. The way he expresses these things takes my breath away. That’s not just a proud mum’s opinion either!
In the words of almost everyone who meets him, Lijy is an absolute joy. He loves life in a way that is quite contagious. People cannot help but smile when they watch him for more than a few minutes. He also has many varied struggles, but he happily laughs, flaps and spins his way through life. He adores nature, and we are convinced that he communicates with the trees, ocean, birds and other animals.
Lijy is a skilful gymnast (especially on the trampoline), has amazing memory, attention to tiny detail, and a love for numbers and music. When all other means of communication aren’t working for him (e.g., hand over hand, PECS, communication device with the LAMP program), music is something that never fails. He seems to learn best through music, which appears to be his language. He has songs to wake up to, songs to get ready for school, songs for the drive in the car, songs to help transition from place to place and the most important of all – bath time and bedtime songs.
Everyone who knows and works with Lijy believes he does understand far more than any of us realise, and we believe wholeheartedly that one day he will find the best way to convey his thoughts to others. In the meantime, we will keep following his lead and trying to learn from him.
To me, as a parent, Autism is an intrinsic part of who Lijy is and that is a beautiful thing. I would not want Lijy to be anyone other than exactly who he is. Autism means that Lijy sees and experiences the world differently to me, and I give thanks daily that he is patient enough to try to share his view with me.
Sadly, outside of our wonderful bubble of accepting friends, family and teachers, I don’t think society as a whole is very inclusive yet. Often when we are out and about, we get looks of judgement, harsh words and a complete lack of understanding. It saddens me as a parent, but I am comforted by the fact that Lijy appears to be completely confident and proud of the fact he is Autistic. Everything about the way he carries himself yells “I am proud and nothing you say or do can bring me down!”
We hear negative language around Autism and other disabilities all the time. It’s time for people to realise that disability and Autism are not dirty words. We need to flip the narrative. Yes, there can be a lot of difficulties; most of these happen because society doesn’t provide the right support and understanding.
Autism should not be feared but embraced. When Lijy was diagnosed, the most common phrases I heard were “he can’t” and “he will never …” Now we know that, with the right support and mindsets, he can and maybe someday he will!
That’s why we love the I CAN Network. They not only support Autistic young people in such a powerful way but educate and encourage society as a whole to understand the strengths that come from Autistic minds. With all of the talk of deficits that typically surrounds Autism, I CAN is like a breath of fresh air! I can’t wait for Lijy to be old enough to take part.
If people reading this want to make our world more inclusive for Lijy and other Autistics, the first step is being more open to listening to Autistic voices from all different backgrounds. And if you really want to have a broader appreciation of what Autism is and how amazing the community can be, seek out lots of Autistic friends! Ever since my son was diagnosed, I have surrounded myself with his tribe. I am so much better for it. I believe Lijy is too, as I have a better understanding of how he sees the world and how I can help support him to be the best he can be … though he is doing a pretty awesome job all by himself!
