This World Autism Day, our engagement and data specialist, Alix Harrigan, shares her insights into what makes engagement more accessible to people on the autism spectrum.
You’ve planned your community forum. The venue is wheelchair-friendly and has fully accessible toilets, you’ve arranged a hearing loop, Auslan interpreters, and captioning, your materials are available in easy read formats and multiple languages – you’ve got accessibility covered, right?
If you’ve done all of the above, you’re doing well. But there is something many organisations are still overlooking when it comes to making their face-to-face engagements fully accessible.
In our communities, there is an increasing number of people being diagnosed with autism. Current estimations on the number of Australians on the spectrum range from 1 in 150 to 1 in 70. This should also be viewed in context of the many people, especially women, who are never diagnosed. People like me, for example, who don’t figure out that they’re on the spectrum until adulthood often forego formal diagnosis as it is very expensive and offers limited practical benefit to someone who’s already made it past school without assistance.
Although we‘re a substantial part of the Australian community, people with autism (and families and carers) have reported not feeling included or safe in their communities. Some report this is because there's a lack of awareness about autism, that people and businesses often don’t understand autism or how to provide for the different needs of people with autism (more on this can be found in The Social Deck’s consultation report for the next national disability strategy).
Establishing an environment that’s welcoming to people on the spectrum lets us feel included and respected, but it’s also an opportunity for others to become more aware and overcome misconceptions. Plus, measures to support access for people on the spectrum can be useful to anyone.
So how do we better cater for the needs of people with autism to make sure they are included, considered, and able to participate in our engagement process? From what I’ve learned from my own experiences as both a participant and a facilitator, here’s a few suggestions of important things to consider when designing a face-to-face consultation that’s accessible to people on the spectrum.
1. Don’t make assumptions
People on the autism spectrum are individuals. There’s no one formula for engagement to suit the exact needs of all of us. Different people have different sensitivities, preferences, challenges, and strengths.
People are experts in their own needs, and the things they consider crucial may never occur to someone else. Something we have found at The Social Deck is the value of providing ample opportunity for people to communicate their preferences and needs when they register for an event. Enabling people to provide as much information about themselves as possible has helped us to make sure an event is accessible to their individual needs, such as by having a quiet space with low light ready for a participant as soon as they arrive, rather than having them ask on the day and risk a last minute stopgap.
Avoiding assumptions also means not expecting all people to behave in the same way, including ways that might come naturally to most. Not making eye contact, repeatedly pausing mid-sentence, overlooking the small-talk script – we may or may not be aware we’re doing it, but either way it’s not intentional or careless. Unfortunately, the unconventional ways people with autism may express themselves are often misinterpreted as poor understanding or ability, or as disinterest, and opportunities for valuable engagement are missed.
Pre-conceived ideas of what autism looks like are also often highly flawed and misleading. Just because you're not seeing obvious signs, such as someone wearing headphones or refusing to interact with others, doesn't mean someone isn't uncomfortable or finding it more difficult to participate. Being considerate that people may be having a hard time with things others find simple can be the difference in whether a person feels confident and able to make a meaningful contribution.
2. Give people time to process
Being put on the spot is one of my least favourite things. I have a sharp wit, but ask me a question out of the blue and my mind fills with static. Like many of my spectrum peers, I want as much preparation and detail as possible, to get my head around what’s being covered and compose my thoughts.
Providing materials in advance is another small and simple thing you can do to make people feel more confident about attending your event. This can be as simple as uploading information online with enough time for us to read it before the event. Keep in mind that too much information all at once can easily be overwhelming for a brain on the spectrum, so when you provide materials to your participants make sure they’re clear and it’s provided with enough time and space to come to terms with and become familiar with the information.
Sharing the agenda with participants and exactly what will be covered on the day is very important. We know this can be hard if you’re preparing right up until the event, but if you want the best out of people, it’s important to take charge to ensure there’s enough time built in.
3. Clear instructions. Clear explanations. Clear expectations.
If being put on the spot is my nightmare, knowing exactly what to do, what to expect, and what is the intended outcome of an activity is my happy place. People on the spectrum can be extremely uncomfortable with making mistakes or appearing ignorant. I second guess myself and can really overthink things, which can lead to stepping back rather than take a slight risk. (On the other hand, we might end up nervously rambling in growing desperation to represent ourselves accurately.)
We are also notoriously literal-minded, and in novel situations can struggle to fill in blanks and take leaps in the dark (or even the semi-light). Try to take a step back when designing directions and explanations and consider if anything that may seem obvious to you could be missing or open to misinterpretation.
Be as clear and literal as possible. Getting someone from outside the project to read through and follow the instructions is one way to flag some of these.
4. Be direct
Just ask me what you want to ask me. It may be obvious to you what you’re getting at, but if you come at it sideways there’s a solid chance I’ll miss the point. Metaphors and analogies can be very helpful tools, but asking loaded hypotheticals and talking around the edges of what you actually want to know is probably just going to end up frustrating for everyone.
5. Listen to different voices and provide different methods of engagement
I express myself better in writing than out loud. In writing you can take your time, see your thoughts laid out and organised, and make clear amendments. I like to write out my thoughts in paragraphs or dot points, others may prefer to arrange sticky notes on a journey map, or to create visual representations. Some may need to go away and collect their thoughts before submitting any responses, while some may find verbalising in a group setting to be the most comfortable way to share.
You’ll never get the full picture if you expect everyone to contribute in the same way. So if you have the capacity to provide alternative means of participating, such as online, this can significantly open things up to people who would find the in-person environment too overwhelming, and improve access more broadly.
Making room for different voices isn’t just giving a bunch of ways to share, though. It’s easy to be talked over and left out when speaking up feels like trying to surface through mud. I’ve grown accustomed to my sister’s knowing looks when I keep looking for an appropriate, polite opening in the conversation, and talking in my measured (slow and stalling) cadence while others talk across each other in blissful oblivion to my struggle.
Establishing and enforcing protocols to give everyone their turn can make a subtle but significant difference. Another simple, but impactful, adjustment can be sitting alongside instead of across from someone who may be uncomfortable with eye contact to make conversation easier.
6. Provide space apart
Even in the most welcoming, inclusive spaces, things can get a little much at times. People on the spectrum sometimes just need a break from the noise and light and human interaction, or even just the smell of people’s perfume. If you can, set aside a space at your venue with low light and low noise, and that is fragrance-free, where people can take a breather.
7. Control the volume
Sure, a bit of noise is essentially unavoidable. Nevertheless, there are still some practical ways to make things less overwhelming. Little things like directing that only one person is to speak at a time in each group can go a long way to preventing the noise level from getting out of hand. Participants may also be inclined to applaud others’ contributions, which can be uncomfortable for someone who is ‘over-responsive’ to sensory input. An effective alternative is to direct participants to use ‘deaf clapping’ (waving hands in the air), which has the useful side-benefit of also being more inclusive for hearing impaired participants.
8. Cater for sensitive tastes
Having a picky eater in your life can be frustrating, but, trust me, it’s usually immeasurably worse for them. I find certain foods, flavours, and textures absolutely intolerable, which makes any situation where food is outside my control stressful. As often as not at a catered event (like, say, a community consultation) I simply won’t eat because there is no food option that I’m comfortable with.
Making an effort to secure catering that includes some simple choices can make your event feel much more welcoming. (I won’t get into the weeds here of what those simple choices could be, but honestly when in doubt think about options that would be considered child friendly.)
9. Ensure trust and allow for assistance from a carer or support person
Some people may prefer to have someone who they trust and can understand and communicate their needs with them. To ensure people have the support they need, allow them to choose to have a support person or a carer present. Provide enough flexibility for them to assist a person’s participation.
The Social Deck uses trusted partner organisations to deliver face-to-face engagements with people who may be more comfortable opening up to people they are already familiar with.
In a concession to stereotype I will end this here, abruptly and awkwardly. I hope it’s been helpful!