The above scenario is not rare for Autistic trainers, public speakers or consultants. We are often passed-over for a company or individual who has no lived experience of being Autistic (and whatever other intersections organisations might need more information on). Organisations post about #AutismAwareness month then will do almost anything to not pay Autistic people for our knowledge and labour.

The narrative of Autistic experiences continues to be controlled by non-Autistic people, who have the audacity to take money out of the hands of Autistic people whilst they do it. Some of these companies and individuals are they very same who share fake concern over the under and unemployment rates of Autistic adults!

It feels like many organisations just want to tick a box and not challenge their understanding of Autistic experiences. I’ve experienced this at the disability charity where I work – I was overlooked for a non-Autistic trainer with a ‘PhD in autism’ and an Autistic brother. I was overlooked as a person with nearly 10 years’ experience in youth work, a person who knows many of the clients and group members. My knowledge and connection to the charity could not be more perfect and yet, for whatever reason (ableism?) I was not seen as knowledgeable for the job. Or that this person was more knowledgeable because she has an Autistic brother!?

Organisations, including disability charities, seem to want a shiny certificate and a box ticked on their OfSted, Quality Care Commissioners, and other such affiliations. They can pay for Equality, Diversity and Inclusion training just as long as it doesn’t benefit anyone from a marginalised background.

Even organisations that do go to courses co-created with Autistic people are missing out on the vital ingredient to Autistic knowledge – lived experience! Co-created training is rarely lead by Autistic people. Often Autistic co-creators are unpaid, brought in too late, or are not given individual credit due to being seen as ‘too vulnerable’. Of course, all three of these things can and do happen at the same time.

The words “co-creation” and “consultation” are expansive and can be used in research and training to mislead people. Readers and trainees may think they are listening to 100% Autistic experiences. Of course, life experiences are different for all Autistic people and intersectionality is an important part of all training. However, leading training on outdated deficit-based frameworks of autism is not helpful for anyone.

In a bid to sound neuro-affirming (to get more clients through the door) some training organisations recruit Autistic co-creators who won’t rock the boat. These Autistic people are often so traumatised and have so much internalised ableism, that they either won’t notice what needs challenging or won’t feel they are able to ask questions and take their place at the table.

Those of us who do challenge things during consultation and co-creation are viewed as unwilling to engage, challenging or just not understanding what is being said to us (Double Empathy Problem, anyone?). Sometimes a good dollop of gaslighting is used too, as of course the way we feel about things is not based in reality(!). After either of these consultation choices the work goes on its neuro-normative way.

What we need this month, and every month, is Autistic people leading and co-creating training. Autistic consultation must be done appropriately – we are not here to prop-up outdated ideas that wish to harm us. Whatever position we hold within training and research, we must be paid for our time and given fair credit and be given a choice in how we are represented in this work. Ultimately, organisations should pay Autistic people for our time, labour and knowledge – you never know, they might just learn something!