How lived experience elevated our delivery of National Autism Strategy consultations

January 15, 2025

Take a look at some of our other past work to see more of how we involve lived experience, or contact us for your next engagement project. A woman standing at the front of a room, looking out of frame and smiling. To her left some flip chart posters covered in writing and sticky notes are visible. On the wall behind her there is a monitor displaying a slide that has an Australian Government logo and says “National Autism Strategy. Help shape the change. Community forum. Cairns/Gimuy”.

The Australian Government released the National Autism Strategy on 14 January 2025. You can download the Strategy here and read on for Alix’s story about how lived experience shaped the consultations to inform the Strategy.

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If anyone asks me for advice about planning and running engagements for target cohorts, chances are my first question will be whether and how people with lived experience are involved in the planning and delivery.

I could run off a list of reasons why lived experience is valuable and necessary. Instead, I’m taking the opportunity with the release of the new National Autism Strategy to share some real-life examples of how my experience existing in the world as an autistic person was helpful as we ran national consultations on the Strategy’s development.

Along with my role in the project, we had the benefit of many autistic co-facilitators and partners to help shape these consultations and inform the Strategy’s development. From our project partners at the Autistic Self Advocacy Network of Australia and New Zealand (ASAN AUNZ) to guidance and feedback from the National Autism Strategy Oversight Council, the consultations were set up and delivered based on advice from autistic people. We also had lived experience of family members and carers from our team, partners and the Council. See our National Autism Strategy Communication and Engagement case study for more about how we delivered this project.

Participant packs

Preparing people for the engagement experience was top of mind.

Probably the most common feedback we got about the process was how much people liked our event participant packs. I was thrilled every time I heard what a difference they made to someone’s experience, but I wasn’t at all surprised.

Participant packs were sent out to people who had registered for events, describing what they could expect. They included details of what would happen at the events, what questions participants would be asked, what tools would be used to engage, who would be there, and, for in-person events, maps and directions for getting to the venue and room, how the event would be set up and facilities available.

I got to put a lot of thought into what the packs should cover and how that information should be communicated. We took care to balance how important it is for many autistic people to have advance notice of what to expect and how to prepare, with the potential for distress if expectations are set up and things change. We also considered the importance of not overwhelming people with too much detail.

Cue cards

One of my favourite things about online meetings is the hand-up function. That little hand icon saves me so much stress.

Having a way to give specific non-verbal signals about how I want to engage in an interaction (or not engage as the case may be)

makes things so much more accessible when finding and speaking out words is a struggle

makes things so much more comfortable when identifying the polite way to participate is a chief concern

makes it so much easier to be present when otherwise your mind would be buzzing with those worries.

So we created cue cards for our face-to-face forums.

We let participants know, ahead of and during the event, that they could hold up the cards whenever they wanted during the sessions to let facilitators know when they wanted to say something, when they wanted to be left alone, when they had a question and when they needed assistance. It was fantastic to see the confidence and calm with which people shared and listened in discussions using the cards.

Stick figure illustration of a group of 5 people sitting at a table. One is holding a microphone and 2 are holding up square cards with icons on them. One has an icon of a red circle with a line through it and one has a purple icon of a person raising their hand. There are more of these cards scattered on the table. Some have the same icons as the cards the people are holding, some have green circles with question marks, and some have yellow triangular warning signs.

Fidgets

If they weren’t so prone to walking out the door with participants (who can blame them?), I’d advocate for putting out fidgets at all in-person events.

Far from being a distraction, by occupying our hands fidgets can help people to settle and focus our active brains on the topic at hand. Especially when your senses are being overwhelmed by unfiltered input from all around, a good fidget, much like stimming, can help you zero in on one steady thing.

Stick figure illustration of a person holding a colourful item with many parts, while they look up with partially raised eyebrows. Beside them there are more items of different colours and shapes.

Of course, when you’re gathered together with a big group of people prone to sensory sensitivity and overload, it’s no good to have something helping to ground one person if it’s simultaneously agitating others. The task was, then, to find simple and satisfying fidgets that could provide a range of different types of stimulus while still being discreet and undisruptive. My lived experience combined with my experience facilitating these types of engagement events made me a whiz at picking out just the right thing.

Consultation questions

Like a lot of my autistic peers, I find most forms and surveys to be a real challenge. If questions aren’t clear enough, or if they box you in to responding in ways that don’t quite match up with what you think, it can stop you in your tracks.

Stick figure illustration of a person at a laptop computer. The person is holding both of their hands to the side of their head while they look at the screen. The screen shows a survey with 3 questions. The first question is multiple choice. The question says, “Which of the following best represents your view?” and the answer options say, “Australia should become a republic so we can declare war on the United Kingdom” and “Australia should join with New Zealand to create a new empire”. The second question has a rating scale. The question says, “How would you rate your feelings about apples?” and the ratings from left to right say, “Growing apples should be criminalised”, “Beef casserole is better”, “The different colours confuse me”, “I had a nice apple once” and “They are the only thing anyone should ever eat”. The third question is another type of multiple choice. The question says, “What are your 3 favourite hobbies?” and the answer options say, “Vacuuming”, “Filling out tax forms”, “Driving in heavy traffic”, “Attending job interviews”, “Unclogging drains” and “Calling customer service”.

When it came to drafting consultation questions and prompts, it made a huge difference to be able to put myself into the position of a participant to consider how well I would understand the question and whether my interpretation of it would lead me to tell the people creating the Strategy what they’d need to know.

Advocating inclusive approaches

A common thread through all of these examples was that I was in a position to advocate. I’m passionate about inclusive practice in general, but accessibility for autistic people is obviously close to my heart, and something I’m quick to take a stand for. Being part of the team making decisions meant I had a full field of vision both over our priorities and objectives and over the underlying nature of accessibility needs. Understanding the why behind both sides – the planning decisions and the best practice advice for inclusion of autistic people – meant that I could see what different solutions could satisfy both needs.

Whether it’s about autism or any number of other diverse and intersecting identities, it’s easy to see that embedding lived experience in projects is not just the right thing to do, but makes things more efficient, effective and a better experience for those you want to engage. Take a look at some of our other past work to see more of how we involve lived experience, or contact us for your next engagement project at team@thesocialdeck.com or 0491 617 118.

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Take a look at some of our other past work to see more of how we involve lived experience, or contact us for your next engagement project.