In 2019, I reached the final year of juggling degree studies and various design jobs. By that time, I had already gained experience as an in-house intern and graphic designer in a couple of Finnish start-ups. I hadn’t given much thought to my career goals at that point — the main focus in my late teens and early 20s was simply to manage.

My relationship with expectations imposed on me has always been tricky. On one hand, I never completed my art studies when I was a teenager, and I regularly skipped my high school classes, causing stress for both myself and my family. My university attendance suffered too. I often found creative ways to avoid assignments that I considered irrelevant.

On the other hand, I enjoyed all sorts of activities — if I had the freedom to choose how to approach the tasks. I took up learning multiple languages, got involved in online communities and fandoms, learned web development and graphic design, got into video game modding… None of those activities, however, validated the personal qualities that I now consider valuable: my desire for learning, my dedication to topics I’m passionate about, or my aptitude for challenge reframing.

Growing up, many of the constraints and expectations felt nonsensical and pointless, so I challenged them — frequently in rather creative ways that would annoy both my peers and the adults in my life. My endeavours in trying to do what I’m expected to do (but with my own personal twist) resulted in academic punishment, scolding, or dismissal.

To my own surprise though, in 2019, I managed to graduate. Around the same time, I secured a new job at Nordea, joining a large design community as a Visual Designer at first, but quickly transitioning into the world of UX with Nordea Design System becoming my first major career project.

Later that year, news of a new virus emerged.

I love RPGs and life simulation games. Growing up, The Sims franchise provided me with comfort and became the ultimate sandbox for crafting my own stories and worlds. In general, my favourite video game titles are those that don’t restrict players in how they can interact with the game world. There’s something special about the freedom to participate and interpret the narrative or game mechanics in transformative ways. From my perspective, this approach to game design not only creates countless gameplay scenarios but also expands the game’s world to a wider audience.

Fast forward to late 2019, I had always suspected that remote work was my preferred modus operandi long before the pandemic hit. I cherished such opportunities. It was rather embarrassing for me to share that I frequently experienced panic attacks while using public transport or that fluorescent office lights made me feel weirdly nauseous. I wasn’t sure how to present myself, both in terms of attitude and appearance.

Adulthood came with a whole new set of expectations that I struggled to grasp, leaving me feeling less valuable than my peers at both university and work.

Dealing with people in person has never been easy for me, primarily because much of my behaviour has been deemed “strange”. Classmates and colleagues would point out my eating habits during shared lunches, question my mannerisms in speech, or giggle at how animated I became while talking. Sometimes, they would even mock the way I phrased a sentence or failed to understand “obvious” jokes.

Here’s an anecdote from the pre-pandemic times: during a team meeting, a former colleague jokingly mentioned that I used up all my paid time off just by working remotely. I wasn’t sure how to react at the time, but I sincerely wonder if that person’s opinion has changed since then, as I write this in 2023.

Then the Covid pandemic began. On a personal level, staying at home brought me a great sense of relief. I found myself becoming calmer, more composed, and more focused. I learned to manage my schedule and establish routines. For the first time in my life, my sleeping patterns improved. However, I also felt that my experience of staying at home was different from that of my colleagues and friends.

The change in work culture coincided with my career shift. I began exploring design areas that captivated my interest. The Nordea Design System project uncovered my previously untapped interest in design processes, interaction design, and systems thinking.

Collaborating with individuals who had extensive experience in UX was exciting. New learning opportunities emerged both within and outside the company, and I was eager to pursue them all. Connecting the dots and solving problems felt purposeful and satisfying.

This change also provided a unique opportunity to become more proactive and vocal through digital communication. In my previous roles, developing social skills was never a requirement, and to be honest, my confidence in the communication department was shaky. This time, I had a safe space to try to be more present in an environment that felt comfortable and natural to me.

Earlier in my career, I often struggled to create work that fulfilled me. I didn’t know what my aspirations were. However, delving into the field of UX and becoming more active in digital spaces overall gave me a sense of belonging. It felt right.

In late 2020, several months into the pandemic, I discovered that I have autism.

“You’re not autistic”

Receiving the diagnosis was not exactly surprising for me. There were a couple of major factors that pushed me towards understanding myself better:

• The shift in daily life that happened during the pandemic highlighted what worked and did not work for me in my personal and work life.
• My designer skillset was evolving, and I took up studying various aspects of the discipline. Accessibility became one of my key focus areas. It was both a personal interest (for obvious reasons) and a skill development suggestion from my team lead. Since then, inclusive design as methodology has become a core aspect of my identity both in my personal and professional life.
• Finally, as longtime member of online communities, I connected with people of diverse backgrounds. I followed both their creative endeavours and their personal stories (there’s a special kind of energy that runs wild in the realms of Tumblr). They spoke candidly of their identities, disabilities, struggles, wants, and desires. I found this both inspiring and scary. A lot of these experiences were deeply relatable to me, yet they were in conflict with the ideas that I internalised about myself.

Overall, my experiences were amplified by various changes in my career and daily life. The diagnosis marked the beginning of a lengthy and ongoing journey. Imposter syndrome began to creep in more frequently, accompanied by moments of confusion, hypervigilance, and occasional bursts of confidence.

Am I empathetic enough to be a designer? I expressed myself and approached people differently (as frequently pointed out by peers), and the idea that people on the spectrum lack empathy is a pretty common stereotype. Especially in pop culture.

Were my personal and professional achievements only possible because I faked my way through? Masking is my go-to coping mechanism. It’s a strategy that helps me blend in — at the expense of my self-expression and comfort.

Are my needs valid or are they just whims? I had a lot of labels attached to me, some of which were rather cruel and dismissive. “You’re not autistic” is the first thing my mum said when I told her that I decided to pursue the diagnosis. Her initial reaction was filled with shame and regret. Fortunately, my mum and I were able to navigate through this with time and patience.

Have I ever truly belonged to any community? Throughout various stages of my life, I have never felt a sense of belonging. My confidence has always been heavily influenced by how others perceive and expect me to be.

As I continued working at Nordea, I began to focus more on accessibility within my role.

The edge case

In “Weapons of Math Destruction”, Cathy O’Neil explores how exclusive systems and algorithms create societal barriers for the most vulnerable groups of people, further reinforcing the cycle of inequality based on biases of their creators (conscious or not).

Focusing on systems rather than individuals is the core idea of the social model of disability. The current understanding of accessibility in digital spaces echoes that sentiment. This stands in stark contrast to the medical model of disability, which suggests that exclusion is the result of an individual’s impairments.

I never got to question this perspective while growing up. I was aware of the difficulties I experienced, but I couldn’t fully articulate them (later I learned that alexithymia refers to the trouble of identifying own emotions). I often wonder how my career would have progressed if the pandemic hadn’t shifted the digital work landscape. Would I still struggle with sensory overload in public spaces? Would my career have developed the same way? Would I have been able to build meaningful relationships? How would I have coped?

It is not uncommon to assume that accessibility is solely about disabled people or their disabilities. When I first started giving presentations on this topic, peers would often suggest including statistics in my sessions to help those who are not engaged with the subject understand its importance. Quantifying disability mattered.

The quantitative approach to justifying accessibility always felt strange to me. The more I engaged in discussions around inclusivity, the more unsettling this idea became.

We assume that there’s an average state that a person can have, and anything outside of that is considered a deviation. We often fail to remind ourselves how barriers in societies affect all of us. We forget that we grow old. How do you justify the value of one’s lived experiences against a bell curve? As a designer, should I also consider myself to be an edge case?

“Mismatch: How Inclusion Shapes Design” by Kat Holmes was integral to my understanding of inclusive design, with insight that not only changed my understanding of my responsibility as a designer, but also shed light on my early formative years as a neurodivergent person.

Just like human experiences, design should not be set in stone. Some may argue that it is impossible to consider the needs of every person, and that is a valid point. We cannot know the needs of every individual, but we can commit to an iterative and inclusive design approach. Microsoft’s Inclusive Design Principles define this best:

• Recognise exclusion.
• Learn from diversity.
• Solve for one, extend to many.

Looking ahead

I was fortunate to have had a relatively easy experience going through the diagnostic process. I had access to occupational health care and was able to meet with a considerate and supportive specialist. However, in Finland, those who seek help in public health care often face long waiting times for their initial assessment. In some cases, they may not receive the necessary help at all.

As I became more self-aware, I started to view my work as a designer in the context of my own experiences, communities, and values. My professional goals became simple and clear:

• I want my work to support inclusivity in digital spaces.
• I want to share knowledge proactively and accessibly.
• I want to be an adaptable and empathetic design generalist.

I made the decision to openly discuss my disability and how it impacts my career and personal life. I shared my experiences at work in the most corporate-friendly way — by making a presentation. Since then, I have been upfront with colleagues and recruiters about my boundaries and needs.

The responses that I have received over the last couple of years have been mostly supportive. Mostly.

Do I know for certain if my openness has affected my career opportunities? I don’t. But I did receive plenty of rejections after some rounds of interviews while seeking job opportunities. The feedback would highlight my “excellent design and communication skills”, commend my overall attitude and case study presentations.

This praise is typically then followed by this: there was a mismatch between the needs for the role and my profile.

The European Disability Forum’s report on the employment situation of persons with disabilities in Europe brings attention to clear employment and pay gaps between disabled and non-disabled persons. Kristiina, one of the respondents featured in the report, sums it up excellently:

Disabled people should be able to highlight their particular needs without having to fear exclusion from working life.

I feel fortunate to be employed and have been working remotely for the past 4 years. During this time, I believe I have thrived both personally and professionally as a designer. I am passionate about my work and confident enough in my identity to assert my needs.

However, I also feel anxious about how others perceive this confidence and assertiveness. It is a genuine fear of mine that this firmness in understanding my needs and boundaries will prevent me from progressing in my career. But then I ask myself: do I want to compromise my well-being because others are unwilling to accommodate me?

When I envision the future, I imagine a world where we actively learn from diversity and move away from outdated notions of averages and exclusivity. It’s a dream that is often confronted by real life, where time and time again the most vulnerable people become affected by discriminatory policies.

At times, a sense of hopelessness weighs heavily on me, but each day serves as a reminder that there is still much work to be done — work that I am eager to be a part of.

Links and references

• Scientific American: Autism, Human Connection and the ‘Double Empathy’ Problem
  https://www.scientificamerican.com/article/autism-human-connection-and-the-double-empathy-problem/
• National Autistic Society: Autistic people and masking
  https://autism.org.uk/advice-and-guidance/professional-practice/autistic-masking
• TV Tropes: Hollywood Autism
  https://tvtropes.org/pmwiki/pmwiki.php/Main/HollywoodAutism
• Sarah Bargiela, Robyn Steward, and William Mandy: The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype
  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5040731/
• Cathy O’Neil: Weapons of Math Destruction
  https://www.penguinrandomhouse.com/books/241363/weapons-of-math-destruction-by-cathy-oneil/
• The Greenlining Institute: Algorithmic Bias Explained
  https://greenlining.org/wp-content/uploads/2021/04/Greenlining-Institute-Algorithmic-Bias-Explained-Report-Feb-2021.pdf
• Scope: Social model of disability
  https://www.scope.org.uk/about-us/social-model-of-disability/
• Jutta Treviranus: Inclusive Design: The Bell Curve, the Starburst and the Virtuous Tornado
  https://medium.com/@jutta.trevira/inclusive-design-the-bell-curve-the-starburst-and-the-virtuous-tornado-6094f797b1bf
• Kat Holmes: Mismatch: How Inclusion Shapes Design
  https://mitpress.mit.edu/9780262539487/mismatch/
• Inclusive Design Principles
  https://inclusivedesignprinciples.org/
• Microsoft Inclusive Design
  https://inclusive.microsoft.design/
• Emma Hinkula, Yle: Miksi kukaan ei auta? (in Finnish)
  https://yle.fi/a/74-20056671
• European Disability Forum: The Right to Work: The employment situation of persons with disabilities in Europe
  https://www.edf-feph.org/content/uploads/2023/05/hr7_2023_press-accessible.pdf
• Yle News: Finland’s plan for the next four years: Eight everyday changes
  https://yle.fi/a/74-20037360