30/03/2026
Important post by Autisticality š
When I first started doing this work, I did a lot for free. I genuinely wanted to help drive change and improve services for people. And honestly, I was honoured to be asked.
āHelp us shape the future of servicesā
āWe thought youād want to be involvedā
āBe part of meaningful changeā
āItās a great opportunityā
"We value co-production"
Iāve been told many variations of āitās good exposureā. The underlying message is that people with lived experience are expected to give their time for free, while others are being paid for the same work - all while the service/organisation benefits. That isnāt true co-production, that's . True co-production values people and their insight. without that is just exploitation dressed up as opportunity.
Thereās nuance here - I still do free or low-cost work, but I'm mindful about what I say "yes" to. If itās for a big organisation with a big budget that will profit from my labour, the answer is usually no.
Advice for anyone starting out: be proud to share your expertise and experiences, but learn to recognise your worth. Your time and insight are valuable, and asking for fair compensation is not selfish, itās essential.
Something that people seem to forget, is just how valuable lived experience perspectives are. And just like any other consultant, they should be paid for their time and effort.
Iāve done numerous free focus groups, NHS advisory boards, and research project groups. Mostly because they needed accurate representation and neuroaffirming input so that good change can be made. But Iāve realised over the years that there is a massive lack of any compensation or even thinking about paying Autistic people (or other people for appropriate lived experience work).
You wouldnāt ask someone to design your website for free. You wouldnāt ask someone to do your taxes for free. You wouldnāt ask someone to give their professional opinion for free. So why do so many people and organisations reach out to Autistic/neurodivergent/disabled people asking them to take part in their focus groups or help them with their work on a voluntary basis?
Pay them like you would anyone else. In fact, to avoid the need to bring in outside help why donāt you just hire people with lived experience? Instead we are seen as tools to make them look more inclusive, or to appeal to a wider audience (usually not even credited for doing their work for them).
If you canāt afford it, then donāt ask for someoneās help. If you can afford to pay other people but donāt pay lived experience people then you are treating them as less. Be better than that.