This is the transcript of the presentation I delivered at UX Australia 2017 in Sydney on 11 August 2017.
I do this when I shouldn’t (inappropriate laughter)
I can’t eat this but I’m not allergic to it (mayonnaise)
This is painful for me (eye contact)
Why? Because I’m Autistic. My name is Ashlea McKay. I was born with Asperger’s Syndrome and I didn’t find out until I was nearly 30. I’d like to share my story with you.
I’ve always known there was something different about me. For as long as I can remember, interacting with other people has always been really hard.
When I was 7, I wasn’t allowed to sit next to the other children in my class. There was a physical gap between my desk and the rest of the U shape of desks. I was a wild free thinking child that parents complained about, so my desk became an island.
When I was 9, my school gave me a social worker to spend my lunch breaks with. She would try to teach me how to make friends on the playground but no matter how many stick figure based scenarios we drew on the whiteboard, I couldn’t figure out how to apply it on the swingset.
One day, when I was 11, I was banished from class without explanation. I was sent to mark other student’s homework in the classroom down the hall. I was convinced that I was enduring some unspeakable punishment and I escaped at the first chance I got. I crept back to my classroom only to find them reviewing the work we had done the day before. That was the day I learned I had a bad habit of disrupting the class when I understood something faster than everyone else. I was heartbroken and very confused. So my teacher, rather than making me do his work for him, changed his approach. He would let me play Word Rescue or he’d give me a novel to read anytime he needed to run a recap session.
High school was harder than it needed to be. I didn’t fit in anywhere and I couldn’t do anything right.
University was essentially just a rerun of high school.
When I started working, I thought things would be different. But I struggled to wrap my mind around office hierarchies and politics. I found it difficult to connect with my colleagues and I developed a reputation for being difficult to work with. I was devastated and couldn’t understand how that had happened.
Through all levels of schooling and throughout most of my career, I’ve been bullied.
I’ve been called weird, harsh, a bad person. A monster. For a really long time I believed that was true. I believed I was a monster.
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.
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 was the best thing that ever happened to me.
Finding out I just have a different brain turned my world upside down and eventually resulted in a huge mindset shift. Having a different brain makes me what is known as neurodiverse. There are lots of people with different types of brains out there covering a broad spectrum of differences including: obviously Autism, ADHD, dyslexia and many more.
Autistic traits are classified by something called the Triad of Impairments. We have what is referred to as ‘clinically significant deficits in all three of these areas’.
Don’t fucking call me ‘impaired’.
I don’t know about you but that’s how I feel about that. I also don’t don’t consider myself to be impaired.
I’ve met people who view the autism spectrum as a severity scale. I find this to be really unhelpful because I don’t think that severity of symptoms accurately portrays experience. People at the ‘mild’ end of this scale still have legitimate struggles and people who sit further along this scale and might not communicate verbally, aren’t necessarily worse off or ‘more impaired’. They might be perfectly happy and just communicate differently.
I view the spectrum as a highly detailed colour wheel with segments of shades, tints and hues. Every single one of these segments is an autistic trait. Every autistic person has their own unique configuration of these traits.
But what does it actually mean to be autistic?
I’m going to 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, you’ve met ONE autistic person. We have our similarities but no two of us are exactly the same.
Conversation is really hard for me. I find it very 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.
I take things literally and am usually the last to get a joke- by a few months.
I can’t always read body language and social cues like when someone wants me to stop talking.
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…(long deliberate pause) ... and I think talking about the weather is weird.
Unwritten social rules like not eating until everyone else has received their food also make no sense to me. My food is not going cold on account of you.
My facial expressions don’t always match how I really feel.
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 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 is 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.This can be a really good thing — it makes me creative, but on the flip side, I cry when I’m stressed, loud sounds leave me rattled for several hours and certain foods like that aioli earlier can make me feel sick.
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 (fidget spinners) have been a lifesaver!
Lastly, I experience Executive Dysfunction- not a nickname for my boss but rather a processing based issue in my brain that makes it hard for me to get organised and manage my time.
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 autistic people feel more due to more extreme way we experience emotion. When someone I care about feels sad, I feel sad too. I also feel helpless because I don’t know what to do. Things just get lost in translation but the empathy is there.
My challenges are offset by great strengths that allow me to tackle that understanding gap sideways, back to front and upside down.
I’m very good at solving puzzles and recognising patterns. My subconscious problem solving skills are quite strong and they allow me to sort of file away multiple problems while I do something else and when I come back to those ‘files’, 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’m naturally curious and I’m quite fluid in my thinking.
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 have a very supportive and caring workplace.
So that’s designing with, but how do we as UXers design and research for autistic people?
There are a number of assistive technologies out there for autistic people. The problem is many are aimed at our communication differences and many of these tools seek to change autistic traits rather than maximise their strengths.
This is not helpful. Autistic or not- every single person is different in their own way and that’s a GOOD THING! Focusing design efforts on ‘fixing’ autistic communication differences so that we fit in with everyone else, goes against the diverse and inclusive society we all have a right to enjoy. Autistic people are not broken and they don’t need fixing. What we need is support to be ourselves.
That support could include things like:
Supporting sensory overload
Assisted experiences eg. navigating airports
Tools to manage Executive Dysfunction
I’d like to share two amazing examples with you.
Stimtastic creates and sells toys and jewellery that support our need to stim like I mentioned earlier. These products are researched and designed with and for autistic people. They are inclusive, they cover a wide range of needs and they’re highly affordable. I love the idea of the fidget jewellery because it’s something that we can have with us at anytime and it’s also quite subtle too.
Nana’s Weighted Blankets is probably one of the best examples I’ve seen for providing sensory comfort to autistic people. This company was started in 2009 when ‘Nana’ (also known as Sharon) learned that her then 5 year old grandson, Toby, had been diagnosed with autism. Toby was having a very hard time getting to sleep and he was exhausted. She thought a weighted blanket might help but couldn’t find anyone here in Australia that made them in a way that was safe, affordable and machine washable- some of the options out there were filled with popcorn. So, she made one herself. And it worked! What I love about these blankets is the level of customisation available. The weight, the size, the fabric, the pattern can all be selected.
Before I wrap this thing up, I’d like to share some tips for when you’re researching and designing for autistic people.
Treat us like any other participant- we’re just people.
Don’t be put off by our unusual eye contact. Remember that holding eye contact can be quite painful.
Consider not having observers present in the same room- it can be a bit overwhelming.
Provide clear instructions upfront both written and verbally
Remember that our facial expressions don’t always match how we feel on the inside — if in doubt just ask!
Discovery research is essential and assumptions about our needs and perceived limitations must be avoided.
Don’t classify or judge autistic individuals based on perceived severity- don’t think that because I’m standing up here today giving a talk that my existence is ‘mild’ or that I’m ‘not that autistic’
View autism and other neurological differences the same way you would any other disability- you wouldn’t tell a wheelchair user to take the stairs so don’t force an autistic person to make eye contact.
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, autism does not go around touching people.
You may have noticed that I’ve been using identity first language throughout this talk. I’ve been referring to myself as an autistic person rather than a person with autism. And really that’s what it’s all about. My autism sits at the very core of my identity — it isn’t something I lug around with me in my purse. It’s not an affliction either.
Autism and neurodiversity in general is a hell of a lot more common than you might realise but that’s a really good thing. I’m probably not the first autistic person you’ve met and there’s no way I’m going to be the last. I just have a different kind of brain and I think that’s amazing because diversity is a beautiful and necessary thing. We need all kinds of brains.