© 2019  Ashlea McKay

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Stop trying to fix me: How to design for autism in a way that’s actually wanted and needed

October 20, 2018

 

This is the transcript of the 25 minute presentation I gave at A11y Camp 2018 in Melbourne, Australia on 18 October 2018.

 

I get a lot of emails and social media messages from people who have ideas for products, services and experiences for autistic people.

These messages are usually phrased along the lines of “I’ve come up with this great idea and I’d really love your input”.

 

When this happens, I feel two things — and usually at the same time. I feel excited and curious but I also get this sinking feeling in the pit of my stomach. As I’m opening the link or the attachment or waiting anxiously for their next email or message, I’m sitting there saying “please, please, please don’t be a thing designed to fix me” and I open it….

 

AND it is.

 

My autism isn’t a tragedy to be erased or a problem to be fixed. I don’t need you to teach me how to do something or help me fit into some backwards thing you call ‘normal’. My life has been harder than it should have been and most days I experience some pretty challenging obstacles but none of them are caused by my autism.

 

When I reply to these emails, that’s when things get really interesting.

 

It’s interesting because what happens next shows why I keep getting these emails and why there is so much useless crap out there being designed for autistic people. That’s something that needs fixing.

 

These emails I receive, the conversations that follow and some other examples that I’m going to show you, highlight some major issues and demonstrate what not to do when designing for autism.

 

Part 1

They haven’t done any user research with autistic people

 

The people who contact me have often jumped straight into solution mode and think that talking to me about their fully formed idea constitutes user research.

 

They usually haven’t done any user research with autistic people before reaching this point and if they have, it tends to be a case of them just confirming what they think they already know.

 

There are of course many issues with this research-less approach but one of the most concerning for me as an autistic person is, if you don’t do user research, how do you know that the ‘problem’ you’ve chosen to ‘solve’ is the right one and how do you know if it even is a problem at all?

 

It’s incredibly frustrating for me to see people do this. They’re wasting their time, they’re wasting my time and they’re also contributing to and perpetuating those myths that they’ve bought into and are actually working against the autistics they’re trying to support.

 

People don’t understand what it means to be autistic

 

Speaking of myths, I’ve learned that people just don’t get autism.

When people approach me with design ideas, they don’t always understand what it means to be autistic and they don’t know what might be helpful and unfortunately, they usually don’t want to know. They just want to know if I ‘like’ their idea.

 

They’ve often decided based on rumours, myths and stereotypes, that autistic people have a problem with X and therefore solution Y is going to solve it.

 

People often see autistics as the stereotypical super genius. We’re viewed as anti-social, empathy lacking robots incapable of forming meaningful relationships. People think we’re rude, annoying people who are simply not working hard enough to ‘fit in’ or be ‘normal’.

‘This’ — I’m pointing to my vintage inspired rainbow hair and 50’s style dress — and me standing here delivering this talk is not often what comes to mind. But autism doesn’t really have a ‘look’. It’s invisible! You can’t tell if a person is on the spectrum just by looking at them.

 

I mentioned earlier that the most challenging aspects of my life are not caused by my autism. They’re caused by the attitudes, behaviours, discrimination and abuse I experience at the hands of other people because of how they feel about my differences.

There are people who have good intentions but say silly things like ‘oh your autism must be mild then’ or ‘you seem normal to me’. Thanks to autism related stigma, they see it as a compliment when really it’s actually quite marginalising because it diminishes my experiences.

 

And there are also people who are rather cruel to me — I’ve repeatedly experienced bullying, gaslighting, discrimination and psychological abuse. I’ve received hate mail in both my inbox and the mailbox in my front yard.

 

Diversity and inclusion doesn’t always extend to me. I’m expected to conform. Despite being disabled, my differences and needs aren’t always considered worthy of being met halfway — I’m an inconvenient nuisance.

 

I have a strong support network but the marginalisation I experience is quite hard on me.

Sometimes it makes me feel like I’m a piece of rubbish. Something to be thrown away. It makes me feel small. It makes me feel powerless. Given that autism is a lifelong disability, when I think about the 60 or so years that lie ahead for me, it’s hard not to feel quite anxious.

 

Autism isn’t a difficult thing to understand. All you have to do is be willing to listen and be open to the possibility that what you think you know isn’t accurate or complete.

 

Their design is ableist

 

The third thing I’ve noticed about design for autism is that there’s quite a bit of ableism out there.

 

A shocking example crossed my twitter feed a few months ago. To be clear — the people behind it did not approach me — I just happened to see it.

 

Pictured in this slide is a robot that teaches emotion to autistic people because its 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.

 

Teaching us how to engage in mind games with people won’t solve the issue at all. All it does is trivialise our experiences and place the blame on us for a huge issue that lives in workplace cultures and negatively impacts upon our quality of life.

 

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

 

A lot of neurotypical people — people who are not autistic or neurodiverse in any way- ask me “Don’t you want to be normal?” or “Don’t you want to fit in?”.

I spent years of my life thinking I was a monster that shouldn’t be around other people because I just couldn’t connect with them. I desperately wanted to fit in and I tried so hard.

 

I use to study other people to build up a repertoire of phrases and gestures like a pattern library and then I would try to do it myself but I always failed because I can’t naturally read social cues or predict behaviour.

 

This is called masking and it’s exhausting. No matter how hard I work, I’ll always be guessing. It really hurts me to keep that mask up. It’s not sustainable and it’s certainly not fair.

 

Why do I have to be normal?

 

Why isn’t it OK for me to just be who I am? What’s so bad about being autistic?

Accepting myself and embracing my differences actually brought a lot of peace and an overall sense of empowerment to my life. There are some things that I honestly cannot do and it’s completely OK.

 

For example, I can’t drive a car. I spent 15 years and thousands of dollars trying to learn. People would tell me that I had to learn how to drive. They’d say it was weird that I didn’t know how.

 

I renewed my Learner Licence seven times.

 

Operating the car while watching all the mirrors, the speedometer, what’s in front of me, trying to focus on what the instructor was saying, the weather, road conditions, other drivers and kangaroos because I live in Canberra — was too much for me. I couldn’t do it all at once. If I was across the mirrors, I was speeding. If I was watching my speed, I missed a mirror or a head check.

 

3 months after my receiving my autism diagnosis at the age of 29, my Learner Licence was due for renewal — AGAIN. I just cut it up. I switched to a proof of age card for my photo ID and the world did not end.

 

I have a right to choose how I live my life and decide what is best for me. I don’t have to justify those choices to other people. I have my differences, there are things I can’t do, and I annoy people with my lack of natural conversation skills, but you know what? Neurotypicals — you aren’t exactly perfect either.

 

No one is — every single person is different in their own way and that’s a good thing! We should be designing to bring people together and learn how to meet each other halfway rather than trying to bring one group into line with the rest.

 

Focusing design efforts on ‘fixing’ autistic differences so that we fit in with everyone else, goes against the diverse and inclusive society we all have a right to enjoy.

But how do we do this?

 

Let’s talk about how we can design for autism in a way that is needed and wanted.

 

Part 2

 

Start by doing user research.

 

Proactively include autistic and neurodiverse people in your user research

 

It seems like a no-brainer but the emails keep coming. When designing for autism, discovery research is absolutely essential.

 

You need to ensure you have a good understanding of the autistic people you’re designing for and you need to develop that good understanding by talking to as many of us as you can.

 

Including us in your research, isn’t difficult.

 

There’s a massive community of us on social media and blogs. Start there and see where it takes you.

 

Reach out to autistic people and instead of just telling them about your idea, recruit them as research participants like you would with any other project. Conduct structured research and offer incentives for our time. Don’t just ask for our opinion on XYZ and treat us like we should be grateful you even asked.

 

Be upfront and clear about what you’re researching and what you’ll do with your findings and any recordings. Practice ethical research and be transparent. Also, learn to take ‘no’ for an answer. If we don’t want to participate, that should be OK too.

 

And even if your design isn’t specifically for autistic or neurodiverse people, you should still be including us in your research anyway and for everything because it is highly likely that a neurodiverse person might use it! Neurodiversity refers to people with different brains. That includes autism, ADHD, dyslexia and many more. Neurodiversity is everywhere!

 

Design flexibly

When considering what useful design for autism looks like, there’s two ways of looking at it: design that is specifically for autistic people and inclusive design that is of course intended for use by the widest possible audience. Both approaches are valid and depend entirely upon what you’re doing. I’m not going to tell you that one is better than the other. It really is a case of it depends, but they do have one thing in common: the need for flexibility. Flexibility both in your approach and the design that comes out the other end.

Most days, I wear noise cancelling headphones. I wear the Bose Quiet Comfort 35s. They block out the right amount of the audio in my surroundings so I can focus. They’re wireless, they’re very comfortable and they sit over my ears clearly communicating to those around me that I have checked myself out of my surroundings. They’re also a product that anyone can buy.

 

As an autistic person, I have sensory differences. I’m very sensitive to sound and light. Before I found these headphones, I went through 4 other pairs from 4 different brands. Shopping centres can be quite overwhelming for me, so I had to purchase them all online and couldn’t try before buying. It was an expensive and pretty damn wasteful process — the other pairs were all of a similar quality and price. If only there had been a way to flexibly try out all 5 pairs. Funnily enough, Bose offers a 30 day trial guarantee to their US customers but unfortunately not in Australia.

 

When designing flexibility for autism, don’t take my choices away from me.

Don’t punish me for needing to do something differently — all options and pathways should lead to an equal outcome e.g., communicating with service providers in writing via email or social media instead of calling should allow me to complete the same task within a reasonable time frame. I once sent an email to an airline and the automated response I received said it would be up to 21 days before I should expect a response and if that was too long, I should call them. It’s actually really hard for me to communicate with people I don’t know over the phone.

 

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.

 

Don’t view designing to support autistic differences as some additional thing you need to do — be inclusive by default.

 

Practice inclusive language/Conclusion

Before I wrap this thing up, we also need to talk about language.

It’s very important when researching and designing for autistic people that you practice inclusive language.

 

You may have noticed that throughout this talk I have been using identity-first language. I have been referring to myself as an ‘autistic person’ rather than a ‘person with autism’. When we talk about disability we’re always told to use person-first language to separate the person from the disability but autism is quite different in that regard.

Like many other autistic people I feel that my autism sits at the very core of my identity- It’s not something that I lug around with me in my purse.

 

It’s my brain and it’s present in everything I think, feel and do. You can’t separate me from it but that’s a good thing. Getting diagnosed as autistic at the age of 29 made me feel whole. It’s who I am and I’m damn proud of it.

 

Avoid using 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!

 

Also avoid using functioning labels. My official diagnosis under the DSM-V is: Autism Spectrum Disorder Level 1 — if I’d been diagnosed before May 2013 they would have called it Asperger’s Syndrome. I identify as being autistic and I feel that it’s more inclusive because functioning labels exclude parts of the spectrum and diminish the validity of experiences had by an already marginalised group.

 

Try not to think of it in terms of ‘mild’ or severe’. Autism is autism. All autistic support needs are valid no matter how ‘mild’ you think that person’s existence is.

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.

Me accepting my differently wired brain and it isn’t an insult or a cause for offence. 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 about equality.

 

It’s about creating a level playing field and fixing this world — not people — so that everyone regardless of their entry points is afforded the same opportunities and experiences.

 

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

 

As for those emails. I don’t want to discourage you from continuing to send them to both me and other autistic people. If the key message that you take away from this is “don’t send Ashlea emails”, then I have failed. Spectacularly. I just want you to have a think about everything I’ve said. Listen to me, listen to other autistic adults, keep listening and see what you can do so that we can meet in the middle and work together to make things better for everyone.

 

Thank you.

 

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