Understand ASD beyond borders. And strategies to improve neurodivergent life that doesn’t involve masking.
|shay.||Jan 1, 2020|
Thunberg writes in her journal on the train as she travels from Lisbon to Madrid for a U.N. climate conference Evgenia Arbugaeva for TIME
As Greta Thunberg was named TIME’s Person of the Year, the conversation about autism and autistic people continues. If you have read my writing before, you may know that I’m also on the autistic spectrum; which is the term I always prefer using over ‘’a person with Asperger’s syndrome” or “I have ASD”.
I wholeheartedly believe being autistic simply means my brain works differently than the “norm” and there’s nothing wrong with that. I don’t see autism as a disorder or a disability (speaking from a, for lack of a better word, “high-functioning” point of view); which also applies to other types of neurodivergence, e.g. dyslexia, ADHD, OCD, bipolar. I like my brain, and I don’t need to be cured. Some people in the autism community agree with me, and I know there are plenty who don’t.
As you could already tell, we’re not a monolith. Contrary to what many would believe, autistic people are not all geniuses and we don’t just exist when we are so. We also have challenges, different than most, but not unlike everyone else.
Somewhere in my teenage years, I suffered my first panic attack. By the time I was 18, I had attacks almost every day, resulting in a visit to a psychiatrist, who diagnosed me with Depression and gave me some medications. A few years later, I was diagnosed with ADHD and Asperger’s or AS (now under Autistic Spectrum Disorder according to the DSM-5) with co-existent Generalised Anxiety Disorder and Depression.
But before diving further, let’s get clear about what autism is.
A Brief History of Autism
The word autism was coined by psychiatrist Eugen Bleuler in 1908 to describe withdrawn schizophrenic patients. In 1944, Hans Asperger studied a group of children who has what Asperger would describe as a “milder” form of autism. This condition was later named after him, Asperger’s Syndrome (AS). His Nazi involvement is the reason why some people like myself don’t like being associated with the term.
Fast forward to the 70s, when autism became better known, but there was still confusion with mental retardation and psychosis. In 1980, the term Infantile autism was listed in the DSM for the first time, which also separated autism from childhood schizophrenia.
Almost a decade later, the DSM-5 changed the definition to include Asperger’s Syndrome under one umbrella term, ASD. ASD is now defined by 2 categories of symptoms: persistent deficits in social communication/interaction and restricted, repetitive patterns of behaviour. To make it clear, different people exhibit different symptoms. If autism was a colour wheel, I’d like to think I would be somewhere in the dark purple area. It is also common to have other conditions existing along with ASD, which makes diagnosis more difficult.
Among the defined “symptoms”, I found myself checked off several, including:
difficulty understanding gestures, facial expressions and tone of voice
avoiding eye contact
taking everything literally
a different understanding of personal space
an intense need for routine and rituals
extreme interests in specific topics
Interestingly though, this is a Western diagnosis, re-enforced with Western social standards. I didn’t know I needed to make eye contact with people until I moved to a Western country. Or taking an interest (maybe to the point of obsession) was celebrated in my own culture instead of being demonised. Because I was autistic but verbal, I could move through the world relatively with ease since Asperger’s Syndrome doesn’t exist, speaking from a privileged point of view where I don’t need daily assistance.
Moreover, growing up in a society still busy battling poverty and overpopulation, I didn’t have the words to explain how I felt differently from others, let alone get help. I sometimes joke, with my dry sense of humour, “I’m more autistic in English than in Viet.” Languages have an effect on our life like that.
[…] we may not all be on the autism spectrum, but we are all on the human spectrum, and that’s important. — JB Woods
Like many immigrants, I had to learn about the culture of the country I moved to. In many Asian cultures, eye contact can mean rudeness. So when I was required to look into others’ eyes, I realised I was immensely uncomfortable. And yet, if you talk to anyone who knows me IRL, they will tell you that I’m a confident person, who can hold eye contact like any other confident person. The truth is like many other autistic people, especially women and non-binary people, I’d learned how to mask social interactions rather well, by staring at people’s lips, by looking behind people’s heads. Sounds weird, I know. But it works.
Not all autistic people feel the need to do this. I, in many ways, have a foot in the “autistic closet” and the other one outside. I don’t hide the fact that I’m autistic, but I test the water before I disclose this fact to people. I censor my own identity even though I know I shouldn’t so I can feel safer in the world. Because when I disclose the fact I’m on the spectrum, people still look at me and say “You don’t look like it.” or simply stare at me blankly like I’m an alien from outer space.
Sometimes, I can’t help but wonder how my life would have been different if I had been diagnosed earlier in life, in a Western country with more insights but less empathy. Would my life be better or worse?
As a result of my circumstances, I grew up without the knowledge of why I feel different, how my brain works. But I also indulged in being alone, reading and not looking into people’s eyes during a conversation. I still suffer from social anxiety, but that’s because I don’t understand social cues. I have social skills because I learned them the only way I knew how, I researched, I read, and I practice.
While many of my peers who grew up in a Western society struggle from the stigmas of society, “high-functioning” or not, I found myself reject them altogether. I learned to adapt instead of limiting myself to what people me I can and I cannot do. I do what I need to have a productive life in this capitalistic world while adjusting my life to suit my needs. I’ve been working since I was 15 and holding a full-time job for nearly a decade. Meanwhile, in Australia, the unemployment rate for autistic people is 31.6 per cent and higher in other countries. I suspect there are many more autistic people who are working under the radar, and many are likely to be undiagnosed or misdiagnosed.
You can say I’m the very definition of a successful young person. It wasn’t easy, it never is living neurodivergent. I’m now emotionally and mentally fit. Because I understand being neurodivergent means you need to learn about your brain so you can work with it, not against it, not to fit in society’s mould of what a neurodivergent person looks like. I promise you being different is nothing to be scared off; it can be a beautiful thing.
I’m not saying these things to boast, but I would like to offer a few strategies I use(d) to grow and improve my life. I’d argue that as neurodivergent people, we can succeed in the reality we’re all bound to, despite and because of our differences, as many people have.
It’s worth saying I’m not a medical professional, these are only the strategies that worked for me because I would never fully understand the struggles my non-verbal peers face in the world. More than that, different types of neurodivergence need specific strategies, so I encourage you to seek more knowledge and professional help for further self-awareness and growth.
I know it’s annoying. And hard. And it takes efforts and a lot of time. But you’ve got to do it. Yes, I mean exercising, meditation, sleep and eat right. All of that stuff. Because without being physically and mentally fit, you will struggle more than you need to achieve anything else. Even when you do make your goals, it won’t be worth it without you being well enough to enjoy it.
Work smarter by taking care of yourself, starting today.
Adopt a Growth Mindset
Most children get brought up on a fixed mindset. We all grew up believing we are born with “a certain amount of intelligence, a certain personality, and a certain moral character”. A diagnosis of a “disorder” is a prime example of having a fixed mindset. If you have ADHD, you will never be able to focus. If you’re on the spectrum, you can’t communicate. If you have schizophrenia, you’re mad. If you have any of types of neurodivergence, you’re told to find a way to make yourself seem “normal” (i.e. masking or blending in), or you’re fucked.
In reality, having a neurodivergence means that how your brain started with, it doesn’t mean you’ll forever be so. A growth mindset means whatever strengths and weaknesses you have, you can improve what you’re good at and mitigate what you’re kinda terrible at to have a better and meaningful life through sustainable efforts. Having a growth mindset means you believe “everyone can change and grow through application and exercise.”
For example, I struggle, hard, with social interactions and facial expressions. I don’t fully understand them at an intuitive level. Still, after reading about psychology, observing people’s behaviours, reading fiction and non-fiction, watching YouTube videos, movies and TV series, and practice social interactions with others, social interactions slowly became more natural to me. Reading people’s facial expressions is much harder to learn because I’m usually staring at the back of their heads, but I’m much better with tones after many years of paying attention.
Furthermore, to make growing easy, get more aware and accepting of yourself and your diagnosis.
Be a Knowledge Sponge
As a kid, I could never get my questions answered, and I love reading. As a result, I’m a stubborn adult who would search every corner of the internet until I’m satisfied with my own questions. If not, I would look for more information on page 10 of the search results until I feel defeated and find a person to answer my questions, which I avoid at all costs.
I’m also an owner of a shit memory, I can’t learn by heart. To learn more about a topic, I read and listen from various sources. The internet was an escape and where I could explore the possibilities of the world.
Learning from various sources helps you link information together and think more critically about the information you consume. While knowledge flows into your brain more naturally.
Another side effect is the rabbit holes of information. And these rabbit holes help lead to more information and expand your world. Slowly, the dots started to connect to each other. You’ll growing without knowing, implementing what you learn from one thing to another.
Let curiosity guide you. Be obsessive and don’t forget to let your brain rest.
Around the age of 16, I stumbled into Design. Since then, I owe all of my success to the Design Community. How open, curious, and generous it is. The Design Community was full of weird people, and I fitted right in. As a baby Designer, Design also forced me to put myself out there, to compete, to talk to people, to learn, and to grow. Design blends my creativity with my analytical senses. I could make anything. I could be anything.
Design Thinking also forced me to into a way of thinking and doing that I can get myself over the line instead of being perfectionistic and obsessive. The more and more I work in Design, my anxiety calms down, and I start things with ease. Eventually, I got used to change.
In short, Design Thinking is a process that helps you experiment, since iteration is a core part of Design. Adopting Design Thinking into your left means you stop iterating you work and my life. You go through trial and error to figure out a way that works for you.
People with ASD can be rigid in their ways, I certainly am, and Design Thinking creates a different kind of ritual that can help you explore the world beyond your current life routine.
Since my diagnosis never existed, I got treated like other kids at my age who are “full of potential”, the good and the bad that comes with it. Like many Viet families, we understood education was the only way to get out of poverty. I learned the importance of work ethics, and how to handle my money when I was old enough to ask for an allowance. I had difficulty focusing, which made me seem careless with my schoolwork, so mum sat down with me until I got better at it. My mum was strict but loving. And she taught me everything I know about being a good human being.
I suspect many of us are living neurodivergent in other parts outside of the West. I was luckier than most because I have the privilege of “being smart”. Most were deemed as “lost causes”. More than once, I’ve received news about someone I’d known passed away because of a “mysterious illness”. I think many of them committed suicide, for being unable to keep up with the demand of the society around them. I know for sure one of them did. Others fell into addiction. How many of those people died because of a undiagnosed condition? I may never know.
I survived my own depressive years because my family was opened enough for me to seek therapy. I got support, I had help, and I got better. I can speak English fluently, therefore I could seek out more resources. Some resources that helped me come to terms with myself include: How to ADHD, The Aspie World. I moved to a country where my brain is recognised to be different. I have a loving mother and a family who support me as the way I am. Many of my friends aren’t that lucky. On some days, I hope I’m wrong. Maybe my friend just had a chronic physical illness. Somehow that makes it better than having mental issues that you don’t know that is can be helped. Luckily, with the internet, information is spreading faster.
Getting a diagnosis could even be a blessing. I remember the feeling when I got diagnosed correctly. Everything clicked. If you’re unable to get a professional diagnosis, maybe it’s time to look up symptoms online to figure out why you’re feeling different than your peers and find a support system online.
No one is meant to live in this world alone.
My fellow misfits, we were born different for a reason. Don’t let the world tell you that you don’t belong in this world. However, it’s Catch-22 being neurodivergent in this world. You either know who you are very young and get coddled, bullied or worse. Or you fly under the radar and have co-existent conditions like Anxiety and Depression. Or all of the above.
There’s not a robust support system for us yet, but we’re all on the human spectrum, right? So embrace your own differences and other’s because you know what, we’re actually better as a whole, being different, together.