The Autistic UXer: Understand, research for, design for and make a meaningful difference

This is the transcript of the talk I gave at UX New Zealand presents: Ashlea McKay & Natalie Kerschner in Wellington on 23 May 2018.

You know how when a new movie is released and you see those three little words: ‘Only in Cinemas’? I used to think that meant I had to go see it at the movies otherwise I was going to miss out. Then I’d feel incredibly pissed off and lied to when it came out on video 3–6 months later. This went on well into my 20s.

And this! I don’t understand why this is such a hot topic of conversation. I love talking about the science behind the weather but seriously what value is there in randomly commenting on it as it is? “Oh it’s nice outside” and “Yeah, I think it’s going to rain later”.

And lastly, see this? The door knocker? The sound that thing makes can ruin my entire day.

Why am I telling you these things and more importantly, why should you care?

I’m autistic. My name is Ashlea McKay. I was born this way and I didn’t find out until I was nearly 30.

Being autistic makes me what is known as neurodiverse — I have a differently wired brain. There are lots of different brains out there covering a broad spectrum of differences including Dyslexia, ADHD, Traumatic Brain Injury and many more. Tonight I’ll be focussing on autism.

Sometimes people find the term ‘autistic’ to be offensive. I think that’s potentially due to a lack of understanding around what it actually means to be an autistic person. How it feels and what that experience actually looks like.

So, I’m going to share my story with you, explain from my perspective what it means to be autistic and share some practical tips and case studies for when you’re researching and designing with and for autistic people. I don’t speak for the entire autistic community but my hope is that you will walk away from this evening with a better understanding of what it means to have a differently wired brain and why that’s a good thing!

Trigger warning

Before I tell you my story, I have to warn you that some of what I’m going to share might be considered confronting. If you feel you need to step out — please do.

My story

I’ve always known there was something different about me. Something that lived in the shadows at the edges of my very being and never allowed me to get close enough to tie it down.

There has always been a disconnect between me and everyone around me. The way I think, the way I feel, the skills that do and don’t come naturally to me and more, have always set me apart. Everyone is different in their own way and people do experience life stages differently but for me it’s always felt like there was more to the story.

For as long as I can remember, interacting with other people has always been really hard. Statues are much easier to talk to.

My parents noticed there was something different about me from a really young age but every specialist they took me to said the same thing. She’s very intelligent and she just doesn’t know what to do with it yet. I was born in 1986 and for most of my life so far, autism has widely been regarded as a ‘male thing’. When I was a child, no one even considered the possibility that I might be on the spectrum.

When I was 4, I frequently skipped out on preschool — without permission. I’d just stay outside on the playground when everyone went back inside and no one stopped me. I liked it because it was quiet! There was no one to tell me I couldn’t take my shoes off and feel the grass between my toes and it was the only way I’d get to play with the tractor tyres in peace. I really liked the texture!

In many ways, pre-diagnosis life was a lot harder than it needed to be.

The parents of the other children in my classes at school were brutal. They would mock my voice during reading group sessions and call me ‘bossy’ and a ‘know-it-all’. By the time I turned 7, I was already fed up with the number of high horse references being flung in my direction.

It made no sense to me — why is the horse ‘high’ and what do I have common with tall four-legged farm animals? These people were supposed to support, mentor and empower me and yet for some inexplicable reason they couldn’t stand me and they made sure I knew it.

One of these parents worked for a wildlife rescue organisation and one day she brought some native Australian animals in to show the class. Everyone went outside into the courtyard. We were crowding around the benches eager to see what it was when this parent stopped and pointed at me. In a raised voice she said: “No, this is not for you! You are not welcome here and I’m not opening the cage until you go back inside!”.

I was stunned and the teacher didn’t hesitate. She just sent me back inside. It wasn’t even a question it was socially sanctioned discrimination against a 7 year old girl and no one had a problem with that. It was bewildering and humiliating to not be allowed to do the same things as everyone else and have to look on separately from behind a glass door.

Kids weren’t much better. I never had any friends and I got bullied a lot. Their parents did tell them not to talk to me and some had even gone as far as contacting the school so their kids wouldn’t be seated next to me in class. My desk was an island with a sizeable gap between mine and the next one.

I spent most of my lunch breaks walking laps of the oval by myself and imaging elaborate stories and worlds inside my mind. I reached my adult reading age when I was 6 and books became my happy place.

High school was tough. It’s hard for everyone but no matter how hard I tried, I didn’t fit in anywhere and I couldn’t do anything right. They threw partially open bottles of orange soft drink at me, stole my stationery, and one girl decided to stop me in the middle of a volleyball match so she could tell me my hair was too oily and that she was offended by it.

Most of the time, these comments came like a slap in the face and I was often too shocked and confused to do anything about them but on the rare occasions that I did stand up for myself, they called me a ‘bitch’ and when I sat there and took it I was a loser ‘who should just go and kill herself’.

I remember one afternoon when I was 13 and I was just walking out of a classroom on my way to my next class when a classmate came up to me out of nowhere and said

“everyone says that no one will ever love you unless they as much of a bitch as you are”. That stayed with me.

University was like a rerun of high school.

My peers would sit around and discuss the evidence they had to prove how much of a bad person I am right in front of me like I wasn’t even there. Like I didn’t exist. They wouldn’t sit with me in class or at lunch and would happily tell people it was because I was “not normal” and “too weird”.

When I was nominated for an award at the end of my final year, they told me I didn’t deserve it. They said I had ‘taken’ it from someone else and the only reason I was nominated was because someone believed in gender equality.

When I started working, I thought things would be different. I thought it would be my fresh start, but I struggled to wrap my mind around office hierarchies and the existence of office politics which to me seemed absolutely ridiculous. I found it difficult to connect with and understand how to interact with my colleagues.

I developed a reputation for being difficult to work with quite early on in my career. That broke my heart. My work is everything to me. The worst part is, I don’t even know how it happened.

I once got banned from conducting user research. I was told that I wasn’t trusted to speak to members of the public. Despite having done it 1000 times before, I was directed to train someone else to do it for me. I was however permitted to fetch the participants from the foyer, observe as the notetaker for all sessions and write the report. At the end of the project, the only feedback I received was this: Ashlea worked on her social skills. That made me feel sick and small. At the time- I couldn’t figure out what that feeling meant but I now know that’s what marginalisation feels like. It feels like a sickening gut-punch.

I’ve experienced bullying and harassment throughout all levels of schooling and most of my career.

I’ve been called harsh, rude, inappropriate, offensive and a bad person. A monster. For a really long time I believed that was true. I believed I was a monster.

I was 6 years old the first time I saw a therapist.

I was 12 when I first started showing signs of depression.

And I was 15 the first time I tried to take my own life.

One day, after spending more than 17 years battling depression and bouncing in and out of counselling trying to crack the code of how to be ‘normal’, I decided enough was enough.

I decided it was OK to be different.

Slowly, I started to accept myself for my differences and once that happened, I needed to know why they were there.

Getting assessed and then diagnosed turned out to be the best thing that ever happened to me.

Full disclosure — It’s not all sunshine and rainbow unicorns- but despite the more challenging aspects of my life, I finally learned my brain’s secret. I wouldn’t change a thing. I spent 30 years of my life thinking one way without knowing I didn’t have the full picture. That final piece of context and the right framing has made a huge difference. I know who I am now.

What it means in real terms to be autistic

So that’s my story, but what does it actually mean to be autistic?

When people think of autism, they often think of this (Rain Man). Or this (maths). Or a whole bunch of these (men) with crappy social skills.

But in reality, autism doesn’t have a ‘look’. Autistic people are women, men, LGBTI people, wives, husbands, partners, parents, professionals in all fields including creative ones- hello! We exist across a broad range of intelligence levels and because it’s a spectrum, every instance of it is different.

I’ve met people who view the autism spectrum as a straight line of symptom severity. I find this to be really unhelpful — especially for when people are trying to understand me and my support needs. At a high level, Autism Spectrum Disorders are classified into 3 levels, ASD levels 1,2,3. People will often take this piece of information, look at me and say “Well you’re just an ASD level 1 so fix it because you’re annoying me”.

That’s not fair. It’s not fair to me or anyone else on the autism spectrum. I have a medically diagnosed disability and my brain responds differently to information — my support needs are genuine.

This type of thinking can also lead people to view non-verbal autistics for example as ‘more impaired’ or as less of a person when really they might just communicate differently and be perfectly happy just the way they are.

Autism is autism. There’s no such thing as being ‘a little bit autistic’ or ‘a lot autistic’- you are or you aren’t. The notion that everyone is on the spectrum is at best laughable and at worst deeply offensive. Those traits are clinically significant for a reason!

Keeping in mind that I am not a medical professional of any description, I as an autistic person feel that the severity of symptoms approach does not accurately communicate an autistic individual’s experiences and needs. Sure it holds value from a medical perspective and the rigorous diagnostic process I had to go through but for everyday life moving forward, it’s not as helpful.

So I designed my own model to help me communicate how I see the autism spectrum to others.

A highly detailed colour wheel with shades, tints and hues. Every single one of these little segments is an autistic trait. Every autistic person has their own unique configuration of these traits like this.

But what do those autistic traits look like?

I’m going to tell you what some of mine are and share a bit about what it means to be autistic for me. I say me because it’s really important to recognise that if you’ve met one autistic person- congratulations! you’ve met ONE autistic person.

We all come from the same colour wheel but no two of us have exactly the same palette.

Conversation is really hard for me. I find it difficult to focus and follow the flow of a conversation. Starting one, ending one and knowing when it’s my turn to talk doesn’t come naturally to me.

Group settings are really hard. I love going to big UX conferences but it can be quite overwhelming- the constant interaction, the crowd, the sounds, the bright lights near the stage area. For a brain like mine that is information overload! To help me cope I take little breaks — I might sit up the back for a talk or I might go out for a walk during lunch.

You might also see me knitting during talks and breaks. It calms me down and fun fact, has been proven to lower your heart rate by up to 11 BPM. You should all take up knitting!

I take things literally — like with the cinema — and don’t always understand jokes or sarcasm. It once took me three months to understand a Dad joke. I also don’t always know when I’m being made fun of.

I can’t always read body language and I don’t naturally understand social cues like when someone wants me to stop talking.

My facial expressions rarely match how I feel on the inside. You can tell when I’m really happy but that’s about it. People often think I’m angry when I’m actually just deep in thought! I’ve had these lines on my forehead since I was 10 from scrunching my face up too much. I don’t even know I’m doing it but the evidence is pretty clear.

Sometimes when I speak, I get caught in a loop and tend to repeat myself or make weird sounds that are parts of words or mashups of multiple words. Phone calls can be a bit awkward because it can sound like the reception’s cutting out.

I tend to say exactly what I think and lack a natural understanding of what is and isn’t appropriate.

Small talk makes zero sense to me. I’m quite comfortable with silence………….. and I think talking about the weather is weird.

Unwritten social rules like not eating until everyone else has received their food make no sense to me. My dinner isn’t going cold on account of you.

If that food happens to be ham and pineapple pizza, I will remove the pineapple because I think warm fruit on pizza is weird and no I can’t order it without the pineapple.

I laugh at inappropriate times.

Like from the front row at a conference in the middle of the keynote when there isn’t actually a joke being told (true story).

Routine and stability are quite important for me. It’s not that I can’t deal with change, it’s more that it affects me quite deeply and it can take me longer to adjust.

My eye contact is unusual. Holding eye contact with another person can be quite painful for me.

I have a narrow field of interests — I was colouring in long before it was cool and do it every day.

I experience the world at a heightened level of intensity. Some of you experienced a little taste of that earlier during the activity.

This can be a really good thing — it makes me creative, but on the flip side, I cry when I’m stressed, loud sounds like a knock at the door leave me rattled for several hours and certain foods that I’m not actually allergic to can make me feel really sick. I have to choose very carefully when I’m eating out and just say I’m allergic when I’m not.

I can focus my attention so deeply that if I’m interrupted, it can be very hard for me to get it back. I also have trouble rapidly switching between tasks unless I planned my day out that way in advance- it shakes me up and makes me quite anxious and it can be hard for me to communicate what I’m feeling. People often just think I’m stressing over nothing but they don’t understand what’s really going on!

You might see me fidgeting or hear me clicking my tongue against my teeth — it’s actually called ‘Stimming’. It happens involuntarily but it’s a good thing because it calms me down. These things have been a lifesaver!

Lastly, I experience Executive Dysfunction — not a nickname for my clients but rather a processing based issue in my brain that makes it hard for me to get and keep my shit together.

Being a UXer with an autistic brain

So, what does this all mean for my UX Career? We design for people — people that I struggle to interact with! I can’t tell you the number of funny looks I’ve been given when I tell people what I do.

I think it stems from the myth that autistic people lack empathy.

That couldn’t be further from the truth. If anything the opposite is true — autistic people feel more due to more extreme way we experience emotion. I feel everything. My world is so intense and just by being around other people I can pick up on what they’re feeling and I feel it too. I just don’t instinctively know what to do with that information or why I’m feeling it. I feel helpless and confused — it’s like I’m in a blender.

Things get lost in translation but the empathy is there. I can relate to and share in the feelings of others.

There are a lot of benefits to being autistic and my challenges are offset by great strengths. Strengths that I think are pretty useful for a UXer to have.

I’m very good at solving puzzles and recognising patterns. My subconscious problem solving skills are quite strong and I can just sort of file things away while I do something else and when I come back to it, I know the answer.

I’m an expert level dot connector in the way I can take seemingly random scraps of information and draw meaningful conclusions. I can’t tell you how many secrets I’ve blown wide open!

I’m naturally curious and I’m quite fluid in my thinking. While I thrive on structure and routine, I am incredibly open minded. That’s probably one of the reasons why I love user research so much. I have no problem showing up to a contextual study with the intent to find out what is there to be found out. I don’t impose constraints on my thinking if I don’t have to. It works for me because I view the fluidity as a rule and that gives me the structure I need while allowing me to freely explore.

I’m fearless — I have no issues asking those so-called stupid questions and I’m able to articulate why I need those answers.

I’m not without my limitations, but I’ve gotten pretty good at managing them.

I use Trello and paper based to do lists to help me stay organised.

I work four days a week. That gives me an extra day to decompress.

I’m self-employed so I have a very supportive workplace but I also get to choose who I work with and what I work on.

So that’s designing with, but how do we as UXers research and design for autistic people?

Researching and designing for autistic people

There are a number of assistive technologies and experiences out there for autistic people.

The problem is many are either for children or are aimed at our communication differences. Many of these tools seek to change or ‘fix’ autistic traits rather than maximise the strengths that are already there and support us just as we are.

This isn’t helpful. Because for one, autistic kids tend to grow up, but also because it doesn’t add value to our lives or address our genuine support needs. We can’t just turn into completely different people or conform to some backwards notion of normal. We wouldn’t be on the spectrum if we could!

This shocking example crossed my twitter feed about two weeks ago. It’s a robot that teaches emotion to autistic people because it’s creators feel that the solution to fixing the unemployment and underemployment of autistic adults is to train us to ‘navigate office politics’.

This kind of approach says that there’s something wrong with us. It says we’re the robots and we’re a problem! It also says it’s perfectly OK for people to not communicate clearly or directly and there’s nothing wrong with saying one thing and meaning another. It normalises the bullshit that is office politics and that those who are different had better ‘play the game’ if they want to be employed at their skill level or at all.

The robot’s creators — I am deliberately not calling these people designers because that is insulting to everyone in this room — completely missed the point. Teaching us how to engage in mind games with people won’t solve the issue at all — if anything this sets the whole thing back further. It trivialises and places the blame on us for a huge issue that lives in workplace cultures and negatively impacts upon our quality of life. A better approach would be to look at ways to help everyone — autistic or not — meet each other halfway and support each other differences and all.

If you design something to ‘fix’ or ‘change’ an autistic person, you are not designing for autistic people.

Autistic or not- every single person is different in their own way and that’s a good thing! I’m not trying to be a blocker here and I’m not saying that change is bad. What I’m saying is, focussing design efforts on ‘fixing’ autistic differences so that we fit in with everyone else, goes against the diverse and inclusive society we should all be able to enjoy.

Autistic people are not broken and they don’t need fixing. We need support — and a little acceptance would be great too — but we’re not damaged or impaired.

This kind of thinking also ignores a vast expanse of design opportunities that would actually make a difference to the lives of autistic people.

So, let’s talk about what would make a difference.

• Design that minimises and supports sensory differences
• Tools to help manage Executive Dysfunction
• Guided experiences for complex tasks that require a lot of human interaction like navigating an airport terminal

Are just some of the things that would make a huge difference in my life.

As an autistic person, I often need to cobble together my own solutions by repurposing and reframing things that have been designed for more general user groups — like my noise cancelling headphones or buying higher priced airline tickets that offer more personal space in flight.

But occasionally I come across products and experiences that have been designed with autism — or at the very least neurodiverse people because we have a lot in common — in mind and I’d like to share two of those examples with you.

Sensory friendly clothing

The Way of the Cactus designs and sources sensory friendly clothing and more for both adults and kids and is run by 4 neurodiverse adults, all of whom have neurodiverse children.

Why does sensory friendly clothing matter? Have you ever felt irritated by a tag or a care label in clothing that rubs up against your skin? Imagine having that feeling all day, every day, everywhere. The texture, material content, cut and style of clothing are all things autistic people have to consider. I know autistic adults who wear their t-shirts inside out because they can’t completely remove a tag without unpicking a seam and the stub that gets left behind is still far too uncomfortable. For me personally, I rarely wear hosiery… yep I am wearing a pair now but I put them on right before you all got here and they’re coming off as soon as you leave! In the cooler months I tend to wear black leggings with socks instead of tights or stockings because as the day wears on, stockings stretch and they move. I feel quite anxious when I have multiple layers of clothing that are all moving in different directions and at different speeds. I prefer structured, well-fitting garments because they stay still but allow me to move around.

Coming back to The Way of the Cactus, I really love the story behind the brand and it’s so elegant that I think the best way for me to share it with you, is to read an excerpt from the About Us section of their website:

We were tired of trying to squeeze into other people’s expectations of ‘normal’. We were frustrated by being told our children needed endless rounds of expensive therapy if they were ever to ‘fit in’. We were dismayed by being peddled low quality ‘therapy aides’ that broke in the first week. We wanted something different for ourselves and for our families. We are inspired by the way of the cactus. Cacti are survivors. They not only endure habitats that are harsh and unforgiving — they find a way to thrive in them. With vibrant flowers and hardy thorns, cacti are stunningly unique, and yet they are all part of the same family. We are cactus people, finding our own way to thrive in a world that feels harsh and unforgiving.

-The Way of the Cactus

https://www.wayofthecactus.com/pages/about-us

Accessed 19/4/2018

They have a really broad range of products from toys that support stimming to jewellery that provides sensory comfort and of course clothing that meets this sensory-friendly checklist:

• Breathable natural fabric, preferably organic
• Soft and lightweight
• Minimal seams with no loose stitching
• Tagless, or tags on the outside, or tags that are easily removed
• Stretchy and soft waistbands
• No metal or plastic hooks, loops, studs, fasteners or buttons touching the skin
• Design that reduces movement of fabric against the skin
• Great style, looks and feels good

Coles Quiet Hour

The second example I’d like to share with you is something that was rolled at Coles Supermarkets across Australia last year. Coles is one of the two major supermarket chains in Australia and they teamed up with Autism Spectrum Australia to design, pilot and eventually rollout to almost 70 stores and counting something called Coles Quiet Hour. Every Tuesday morning for 1 hour the stores that run it:

• Dim the lights by 50%
• Turn the instore radio off
• Turn their register and scanner volumes down to the lowest level
• Suspend trolley collection
• Remove roll cages from the shop floor
• Roster extra staff on
• And only make PA announcements if there is an emergency

This is kind of a big deal because a trip to the supermarket can be an absolute nightmare for an autistic person! I avoid it for as long as I can and then either make my husband go alone or I go with him but only late in the evening when it’s quieter simply because there’s less people around! The constant beeping, the bright lights, stock that blocks the aisle while it’s being unpacked, the hum of the store radio and the jarring sound that a line of trolleys make as they crash together can be really hard to take.

So there’s two examples and now I’d like to share some tips for when you’re researching and designing for autistic people.

When doing research with autistic people:

• Allow extra time for questions when planning the session
• Consider not having observers present in the same room. It can be a bit overwhelming — especially when those observers don’t stay silent like they’re supposed to!
• Conduct the research in a quiet room with natural lighting and recognise that autistic people are quite sensitive to their environment. If you’re ever unsure, just ask if there’s anything you can do that might make that experience more comfortable.
• Provide clear, bullet-pointed instructions upfront both written and verbally
• Treat us like any other participant- we’re just people
• If an autistic person brings a parent or carer with them, speak directly to the autistic person. Our parents and carers do NOT speak for us
• Don’t be put off by our unusual eye contact. Holding eye contact can be quite painful for some autistic people and should never be taken as a sign of disengagement
• Understand that our facial expressions don’t always match how we feel on the inside — if in doubt just ask!

These tips are of course most useful when you actually know that the person is autistic. You may come across an autistic research participant without realising, so it’s something to keep in the back of your mind. Don’t ask the person outright. They may not be or they may be undiagnosed. Instead, just focus on finding out what you can do to make the person feel most comfortable.

Designing for autistic people:

• Upfront discovery research is essential and assumptions about our needs and perceived limitations must be avoided.
• Be certain that you are adding value. The market is already flooded with frankly useless crap for autistic people — like that robot we saw earlier! Do your research and you’ll avoid designing something that simply isn’t needed let alone wanted.
• Don’t design to change autistic traits or try to ‘teach’ us to do something — that is ableist and dehumanising. Focus on enhancing our strengths instead.
• Design for autistic people, not their entire family. There are plenty of tools, experiences and support systems designed for parents and carers but there is a significant shortage of useful design for autistic people — especially for autistic adults.
• View autism and other neurological differences the same way you would any other disability — with respect. You wouldn’t tell a wheelchair user to take the stairs so don’t try to force an autistic person to make eye contact or place them in a situation that goes against their sensory needs.
• Practice inclusive language: avoid terms like ‘suffers from autism’ ‘trapped by autism’ and the creepiest one I’ve heard so far, ‘touched by autism’ (I can assure you that autism does not go around touching people).
• Do your research before aligning to autism related organisations — many are run with zero input from autistic people and do not have our best interests in mind. Look for organisations that are run by and for autistic people.
• Do design with us to help change perceptions and de-stigmatise autism.

Conclusion

Before we wrap this evening up, I have just a few more thoughts to share.

You might have noticed that throughout this talk, I’ve been using identity first language. I’ve been referring to myself as an autistic person rather than a ‘person with autism’. I don’t lug it around with me in my purse. My autism sits at the very core of my identity. It’s who I am and I’m damn proud of it.

I mentioned earlier that sometimes people find the term ‘autistic’ to be offensive. They don’t always understand how a neurological disability can be viewed in a positive light in relation to identity. I have a close relative who visibly cringes everytime they hear that word come out of my mouth before they lecture me with “you’re not autistic, you’re a person with Asperger’s and you need to work on it”. Delightful, I know. It’s almost as if ‘autistic’ is a dirty word in the same class as ableist terms of centuries passed. An insult designed to tear down a person who is perceived to be less than or impaired.

I think they get so offended because something that pisses them off makes me really happy!

I own my differently wired brain and it isn’t an insult or a cause for offence. Being OK — being more than OK — with it doesn’t make me naive or a less evolved blocker to change revelling in mediocrity. I have a right to choose what I do with this brain of mine, I have a right to decide how I refer to myself and I have a right to have those choices respected. I like everyone else, deserve to be treated equally.

To me that’s what design for autism — and inclusive design for that matter — is all about. It’s not about complying with accessibility guidelines, it’s not about doing the right thing or being PC and it’s definitely not about fulfilling some corporate responsibility quota and announcing it in a flurry of buzzwords — it’s about equality.

It’s about creating a level playing field and fixing this world — not marginalised people — so that everyone regardless of their entry points is afforded the same opportunities and experiences. That doesn’t mean you have to design one-size fits all experiences because there’s no such thing! Everyone is different in their own way. You need to design specifically for autism and neurodiversity just like you need to design for any other specific user group.

It’s about celebrating the beauty in human differences rather than forcing conformance to create beauty that just isn’t human.

Different brains are beautiful.