Spotlight: Autism Awareness Week

Jasmin Ali and Em Aspinall

3rd April 2023

This month I’m back with an exciting opportunity to learn more about autism and how we can support individuals on the autism spectrum. You might be wondering, what exactly is autism? It's a neurological difference that impacts how people interact with the world around them and with 18% of the gaming industry identifying as neurodivergent, educating ourselves on how to be a supportive ally remains a priority in building diverse workplaces.

Activison Blizzard King has given me the time and space to become better informed by speaking to people with real world experience - learning from the source! Through this discourse, I've found a shortfall in our collective understanding of autism in both personal and professional spaces. I'm so thankful for those who have spent hours with me discussion their lived trauma, their journey to diagnosis, the daily challenges they face - things we don't even have to think twice about.

This month, I'm giving the spotlight over to Em Aspinall. We connected through a mental health first aid course with Safe In Our World, and since then, I've followed their social channels and found their content so refreshing. Em shares candid and honest takes on autistic life. They challenge perceptions and highlight the harmful stereotypes and stigmas around autism - defying the medical model of disability in favour of the social model.

Not only does Em share their experience online via social media, they also deliver a key note speech on their experience of autism in the workplace - and passion is rooted in every word. Em really opened my eyes to how autistic people exist and how overwhelming life can be sometimes.

Question 1: Tell us your story of being Autistic

Answer:

Truthfully, I used to have some really profound misconceptions of what autism is. For a long time, I only had a very limited view into disability through my mum’s brother. My uncle, who's likely autistic also, has what professions have described as severe learning difficulties - he lives in a residential care home. We spent a lot of time together as I was growing up and I realised early on that he couldn't read or write, or do many of the things I was learning to do at school. He communicates verbally, but has repeating speech patterns, favourite phrases and doesn't stray from his familiar script.

But nobody told me he is autistic. He was just my uncle, and this was just the way he was. So, when I started struggling in my teens, nobody thought I might also be autistic. Instead, they chalked it up to mental health issues. It's quite common for autistic people to be misdiagnosed after all!

I remember very early on at college, I was diagnosed with anxiety and depression. This was then reconsidered, and I received a working diagnosis of cyclothymia (which is a rare mood disorder linked to bipolar disorder). This diagnosis didn't really fit right - it felt like a 'trying to fit a round peg in a square hole' type situation. Cyclothymia only explained some of the things I was experiencing, and since they didn't really know what to do with me, they slapped a working diagnosis on me and put me on anti-depressants.

I tried three or four types of medication, none of them helping. If anything they just made me sleep a lot and gain weight. I eventually stopped taking the pills and stopped seeking help. I felt a bit hopeless... Because I didn't have any concept of autism outside of the narrow view my uncle provided, it never dawned on me that maybe what I was experiencing wasn't related to mental health, but neurology.

I have a different neurotype, and because I'd learned to cope with it when I was younger, nobody put two and two together. Now, as I navigated the trials and tribulations of young adulthood, living independently, studying at university and fending for myself, the carefully curated mask was coming lose.

And my parents didn't have autism on their radar, because like me, their only experience of autism was that of my uncle who presented so much differently to me.

It was only in my early 20s, when I was going through the mental healthcare system again, and a medical professional questioned my working diagnosis of cyclothymia, did I finally hear the world-altering words "I don't think you're bipolar, I think you might be autistic."

I was asked if anyone had considered me for an autism referral. I said no, and was then asked a heap of questions about my daily routine, what I was struggling with, my coping strategies.

See, this screening nurse, with his 20+ years working in mental health services with the NHS, who'd seen countless people come and go with poorly fitting diagnoses, was starting to join the dots and see a trend.

When he asked how I cope if I lose my structure, I said I don't cope. I told him it doesn't feel like I am in control, but more that I am at the mercy of the environment I find myself in - situations that cayse my mental health to go down the drain. The penny was starting to drop, and I remember we both saw on each other's face that epiphany moment.

He encouraged me to go do my own research on autism. At the time, no NHS service I reached out to was receptive to my 'theories', and unfortunately the ongoing theme around autism referrals and diagnostic process is "you're not autistic unless you fit this very specific criteria that's based on years of only researching young autistic cisgender white boys".

In a nutshell, you're autistic if you're nonverbal, you don't make eye contact and your social skills are lacking. You're textbook autistic, or you're not autistic. Like in the movies, you're expected to be this socially deprived little boy who likes trains. And since that doesn't remotely align with my manifestation of autism, I was just passed from pillar to post, with nobody knowing what to do with me.

The process of trying to see someone about an autism diagnosis lasted over two years, and the clinic I was finally referred to lost my referral three times. I had to chase them up for months on end, wasting over six months not knowing I wasn't even on the waiting list yet.

They also insisted on talking to my parents, which at the time felt like a tricky situation. I had lost trust in so many of the people around me, and being excluded from conversations specifically about me was a big trigger. My parents also felt like I was "barking up the wrong tree" and held to the same misconceptions about autism that I had held myself.

They felt that my challenges were a product of my personality, not autism. They didn't want to entertain the notion that there was "something wrong with me". But that's the point... I wasn't saying there was anything wrong with me. I was saying that I am struggling. There's a difference.

The referral clinic ended up having a 1-hour conversation with me, and a 2-hour conversation with my mum - and that was all they had to go on. An embarrassing set of infantalising tests, involving reading from a children's picture book, making up a story from random objects like a paperclip, a toy car and a piece of string, and two hours of my mother saying whatever it is she said to them.

Assigned females who are autistic tend to "mask", which is a quick and consise way of saying we camouflage ourselves to make life easier and fit in with our peers. So, I will push down certain behaviours, traits and characteristics that I'd otherwise exhibit in the comfort and safety of my own home - things I'd hide in public or at work to better fit in. I was immediately at a disadvantage during this whole process because I could hide my authentic self so effectively - and more than that, I couldn't consciously take that mask off, even in a setting where being truly myself was what would help me reach the destination of this diagnostic journey.

I guess that's why I share my experience of autism, and why I do my keynote talk to others in my industry. I think a lot of people have a view of what autism is that's so restrictive. Autism is an umbrella term, and can manifest differently in so many of us, but until we accept the complexity and variety of autism, there'll be pockets of our community that fear to be truly themselves, they way I have feared it.

If I'd have sought help earlier, perhaps I'd have been diagnosed with Aspergers Syndrome - which has now been declassified. For a long time, people who were considered "high functioning autistic" would have gotten an Aspergers diagnosis. This opens another can of worms, as "high functioning" suggests there's a "low functioning" which I feel is a harmful and unhelpful label - offensive even! I prefer referring to access needs, if someone has lower access needs like me, or higher access needs like my uncle.

It feels more inclusive! What access needs to you require to feel included? It also allows us to be more clear about the changeability of access needs. I have low access needs, but what those needs look like can change from day to day. Some days are great, and some days I have less processing power. This is a huge part of what I've been trying to communicate during the talk I give, especially to employers.

You can't expect someone's needs to stay constant... So when you're settling on reasonable adjustments, there needs to be some flexibility and the ability to adapt around what new challenge that person may face. One of the most draining and stressful things to do in the workplace as an autistic person is to constantly justify your right to exist in that space.

Question 2: Since finding out you are autistic, how have people changed and do you feel you still mask a lot with those around you?

Answer:

Learning how people respond to labels has been an interesting experience. Anecdotally speaking, older generations have challenged me on being autistic while younger generations have been more accepting - curious even!

I've had many people older than me call me out saying "well, why do you have to call yourself autistic?" or "why can't you just be Em?" or the classic, "you seem fine to me, why do you need to label yourself?"

But that's what people do! That's language! We identify ourselves to our communities, to likeminded people or people with similar lived experiences. It's why we have names, so we can tell people who we are. People seem to take issue with others using words or labels to make themselves feel more valid or real - to feel like they exist, and "autistic" as a label explains a part of who I am. It's not something I have, it's part of what makes me... me?

There are definitely some friends I feel more comfortable unmasking around, but it took a lot of time for me to get to that comfortable place, and I feel like my ability to unmask is very changeable. Some days I fall back into the habit of masking, and as a result I feel so exhausted after any kinf of social interaction.

In terms of work, I do still mask a lot in person, which is why working from home has in many ways been a blessing. I can avoid high sensory input more effectively, helping me save some of that mental energy I'd otherwise lose during commutes, meeting-heavy days, etc.

This allows me to feel more comfortable, and ultimately have more productive days! I tend to have stimming toys and fidgets to let out some of that "autistic energy". Over time, I've also advocated for myself more that I ever did before, and I can now ensure my manager knows some days are better than others, and some days will be worse. I do try to give as much notice as possible on tough days - communication and transparency has been vital in this regard.

Since I don't go into the office very often, a lot of my communication is through text chat. I can type quite fast, and have speedy conversations with a higher information download, than say if I had those conversations in person at the office. I find in the latter situation, not all the information is guaranteed to go in, and I would have to follow up later down the line. Frustratingly, I happen to nod along knowingly, seeming like I am fully engrossed - while my brain does whatever the heck it wants in the background. This is me masking, very much subconsciously.

Question 3: I noticed you went bowling recently and mentioned in your post you don’t go often, What’s your experience in high sensory environments?

Answer:

So, the reason I decided to go bowling was because I hadn’t seen those friends in a really long time and it dawned on me how reclusive I’ve been lately.

I also had the advantage of getting an invite a few days in advance, but if I’d gotten the invite on the day I likely wouldn’t have gone. Having that time to mentally prepare was vital. Thankfully, now I know more about autism and my own access needs, there are things I can do to make the activity more accessible to me, and allow me to access more high sensory environments in general.

I use noise cancelling headphones, which have been an absolute life changer! They take the edge off really noisy environments, but it’s not just about cancelling out noise. It’s about finding a level of noise which is manageable, and then reducing sensory input from other things.

Let’s say if the bowling alley was noisy and smelly, and it felt grubby with kids running around my feet, that would likely be an absolute no-go. I’d have gone home. On this occasion, we'd booked out two lanes, the whole party felt very calm. The time of day we went was also a bit quieter which was a bonus.

I had my creature comforts, some stimming toys, hand sanitizer so I wasn't feeling anxious about germs - though the place seemed surprisingly clean. I got quite lucky this time. But I couldn’t really hear what people were saying. I like to use the analogy of a sound mixer.

Imagine you can see a sound mixer in front of you, and every sliding dial represents a conversation, the music playing in the background, other environmental sounds (like the sound of bowling pins falling in this example). For the neuro-majority, those dials tend to be altered depending on distance, who they are listening to, and the dials are all at different levels. As the neuro-minority, in my case an autistic person, it feels like all my dials are set to max all the time. So, I can't as easily tune into a conversation and tune out everything else. It’s hugely overwhelming and there’s no control.

This is why I identify as disabled (using the social model of disability) - the environment is less accessible to me, to my autistic brain, and it's the environment that disables me. In another environment, I could be thriving!

In fact, I’d love it if there was a low sensory bowling slot that would be more accessible. I can imagine bowling becoming one of my favourite hobbies if I could go at a time they don't play loud music, maybe they reduce lane capacity for an hour so it feels less crowded, and introduced a quiet room with beanbags and sensory-friendly lighting. I'd be there every week.

Question 4: Do you wind down in a specific way after high sensory interactions?

Answer:

Familiarity is my safety. My partner always jokes about how I watch the same things over and over again. I’ve watched Lord Of The Rings more times than I can count.

I have safe songs as well, so when I get really overwhelmed or over stimulated, I can try to drown out the input with something familiar and safe... A good example of this, my partner recently came to pick me up and drove me back from Oxford to Huddersfield late at night. There were loads of flashing lights from passing cars that were really getting to me.

I'd already had a difficult day and I was struggling to self regulate, and it was quickly becoming one of the worst meltdowns I’d had in a while. I remember I started to pull on my hair. It was like my brain was on fire and I just needed it to stop.

My partner knew what to do immediately. He pulled into a service station car park, got me out of the car and gave me some tight hugs, made sure I had plenty to drink, grabbed my noise cancelling headphones from the car boot and set Spotify to play Hide and Seek by Imogen Heap, on repeat. There’s something about that song that’s like "fizzy" and the sound of it is so soothing. It helps me block out all the other stuff swirling around my brain, and focus on a very tactile sound.

I have some safe food too, familiar textures and simple flavours can be really useful in conjunction with grounding techniques I learned for anxiety management. And sometimes I just need to try and cut out as much sensory input as possible, dive under my duvet and just nope out of the world for a while.

Question 5: What are your thoughts on reasonable adjustments within work?

Answer:

I think disabled people can bring so much value to the workforce that reasonable adjustments seem quite a small ask in many situations.

I guess it depends on what’s feasible. For example, I couldn’t work in a supermarket because the lights are just too intense for me, and the buzzing of the fridges gets to me, and it's not like they can just turn them off. I've tried working in a supermarket, I lasted a week before I went into a full shut down and it took me a long while to recover from that.

Some environments just won’t be right for certain individuals. It’s about finding balance between what an employer can do to make a space accessible and what an employee should be doing to make sure it’s the right environment for them.

Truthfully, it’s a tricky thing to talk about from my experience as I’ve only had a handful of jobs. But the way I've learned to communicate and collaborate with my line managers has meant I've been able to be very open about my needs. I feel valued when those adjustments are made. It makes me want to deliver and do the best job I can do. I’m so much more invested in the team’s success when the team is invested in my success.

For example, there was an occasion when I was so fed up during one of the lockdowns, I just felt so trapped by my own walls. I needed to get out of the house, but I also needed to work. So, I spoke to my manager and explained how I was feeling, and she said, “go and do what you have to do.” Because we had built that trust through transparency, she didn't even question it. She knew I was going to get my work done if I did what I needed to do to help self regulate.

Knowing I desperately needed a change of scenery, I went on a train during a less busy period of the day, and put my noise cancelling headphones on, and spent time working on the train. I was doing odd jobs, but I took my time and was in a space I needed to be in. My employer knew the productivity boost I'd get from giving my mind what it needed was worth losing maybe an hour of productivity as I navigated getting on and off trains.

I'd like to point out that being able to jump on a train for the sake of getting out of the house is only something I can do as a product of my privileged circumstances, but it's just one example of how flexibility allowed me to do whatever it was that I needed to do to self regulate and give my brain what it needed to thrive.

Question 6: Do you think there are certain topics around autism that make you feel uncomfortable?

Answer:

I hate the word diagnosis; I think it’s overvalued. Some self-evaluation is needed these days with the sad reality of our underfunded NHS. So many autistic people fall through the gaps.

I also feel "diagnosis" is quite a clinical word and ultimately, if autism falls under a disability on a social model, it should be seen less as a "condition" and more as a different perspective on the world - a different neurotype. The social and medical definition are two very different things. The medical models centres the "patient" as the "problem". The social model refocuses on the environment, and how the world around us can improve to be more inclusive of everyone.

People do still feel uncomfortable talking about autism though, I think. They don’t feel educated enough on the topic, but that's only going to change if we have those discussions. I think people don’t want to say the wrong thing, so they opt to say nothing.

It frustrates me when people who aren’t directly affected still dictate the terms and language that they think should or shouldn’t be used. People are gatekeeping language and shutting down conversations that need to happen because we're not playing by their rulebook. If you aren’t autistic, you likely don't have experience of the same challenges or the valuable context we have - which is why the conversations must be led by actually autistic voices.

While we argue over what language is acceptable (e.g. person first VS identity first), we're losing valuable time advocating for the whole autistic community, and fighting for better research and improved accessibility to critical services (like less traumatic diagnostic processes).

Question 7: What can be done to support autistic people in our industry?

Answer:

Now that's a tricky one, because autism is a huge umbrella so what might help one autistic person may not apply to another autistic person - no two autistic people are the same. There’s no one size fits all formula.

I know that there shouldn’t be a fear in discussing autism though, that's probably the first hurdle. Since the games industry is filled with such an abundant neurodiversity, being the place I’ve found the most connection with people like me, I feel like starting an open and safe dialogue is the best place to start.

There definitely shouldn’t be any discomfort around celebrating or talking about diversity, and I fervently believe it's an employer's responsibility to make space for that conversation. There’s so much more to be done around acceptance of neurodiversity in the workplace, and you need buy in from the top for us to see real progress. Employers need to amplify autistic voices, engage in the discussion, and make sure their company values are inclusive and followed by everyone in their employ, including themselves. Practice what you preach!

People in charge need to show a more vulnerable side to create meaningful and trusting relationships with their employees. We can’t leave our disabilities at home, so we're always bringing a side of us that can be made to feel very vulnerable. Level the playing field. Make us feel safer by being as open with us as we have to be with you to achieve a healthy working relationship.

If someone is expecting you to be able to leave your disability at home, they are a poor employer and will never be able to foster a safe workspace while they have that attitude. Again, the responsibility is not on the neuro-minority to provide this, but the employer to build this. It's done through actions, not just values that they might have written on induction handbooks.

Question 8: How would you personally support a colleague who’s neurodiverse but doesn’t want to share it with the company?

Answer:

Honestly, I would treat them the same as my friends who come out to me, who are part of the LGBTQ community. Rule one, don’t out anybody! Initially, I would check they are okay, because it’s a huge thing to learn about yourself and it can be very overwhelming - especially when autistic people can often struggle with self regulation.

I would also point them towards resources that helped me in the past and direct them away from harmful information. But most of all, I wait. I wait until they feel more comfortable in sharing, in exploring this newly discovered element of their identity, and I wait until they ask for advice. You want to be sure you're not info dumping unsolicited advice on other autistic people who might not appreciate the overload of data to process, on top of everything else they're trying to digest.

But when I am invited to share my own experience with them, when they have the headspace for it, I highlight the benefits of sharing this side of themselves with an employer, but also the potential negativity they may receive while we continue to try and educate employers on what autism really is.

My thoughts:

Autistic people are still people. They want to be understood and have a safe place to share the accommodations they need to create an environment the neuro-majority take for granted. The term "reasonable adjustments" is broad and cannot be defined to a one size fits all policy. Employers need to be flexible, supportive and give autistic people a platform to share, so we can develop our understanding and work on being more accessible. As always, I wanted to share some education pieces that have helped my own understanding and are a good place to start:

• https://awnnetwork.org/ - They have some amazing resources especially around burnout!

• https://www.amazon.co.uk/Allies-Showing-Screwing-Shakirah-Collection/dp/9123541474/ref=sr_1_1?crid=22ODEMUI4Z71M&keywords=allies+book&qid=1679988067&sprefix=Allies%2Caps%2C68&sr=8-1 – Em suggested this book to me and I’m on Chapter 3, it’s not specifically focused on Autism but provides some groundwork for support methods.

• https://www.vice.com/en/article/kzz74x/10-questions-you-always-wanted-to-ask-a-person-with-autism - Another great article, Marlies answers questions I feel the interviewer expected a certain response from, so the answers are really interesting as in may occasions she says the opposite.