European Council of Autistic People 

Positioning autistic people as partners in AI development rather than subjects 

Over 6 million people are estimated to be on the autism spectrum in Europe. And while AI can support autistic people, the European Council of Autistic People (EUCAP) found that most AI is being developed at, rather than with autistic people.

With support from the European AI & Society Fund, they built an evidence base of how AI is benefiting and harming people with autism. This enabled their network of 30 members across Europe to better advocate for autistic people to be seen as partners rather than subjects in AI research and development.

EUCAP also partnered with other grantees, including ACCESS NOW, EDRi and the European Disability Forum to counter ableist narratives spread by the Big Tech industry and demand safeguards on emotion recognition tech in the AI Act.  

The challenge

Disability communities stand to benefit from AI-powered assistive technologies but they also suffer from AI-driven discrimination and bias that affects marginalised groups. Autism spectrum disorder affects around 1 in 100 people. Across Europe, that equates to 6 million people. AI could potentially support autistic people with challenges such as communication, but without autistic people’s involvement in the development and regulation of technologies, AI can fail to deliver what they promise or even be harmful. AI is being developed at, rather than with autistic people.

The action

Set up in 2019, the European Council of Autistic People (EUCAP) is an umbrella organisation for autistic-led national and regional organisations in Europe. To help autistic advocates engage with decision makers and AI developers, EUCAP set out to understand autistic people’s needs and attitudes towards AI, through consultations and a multilingual survey amongst their nearly 30 member organisations in 18 countries. Through a literature review they also mapped how AI is already being used to benefit or harm autistic people.  

This knowledge mobilised autistic communities in Europe and provided key volunteers within EUCAP’s member organisations with the means to engage effectively with policymakers, legislators, researchers and industry representatives to convey the needs and wishes of autistic people. Notably, EUCAP found there should be a shift from AI research and development “on autism” to research “for autism,” with autistic individuals as partners and co-creators, rather than subjects. 

The European AI & Society Fund awarded two grants to EUCAP to support their “Artificial Intelligence and the Rights of Autistic People” (AIRA) project to understand autistic people’s needs, concerns and priorities regarding AI. This funding directly supported an affected community, and a fledging organisation led by people with lived experience that would not be eligible for most philanthropic funding.

Through our Fund, EUCAP also gained access to other grantee partners working on tech and social justice. In the development of the EU’s AI Act, technology companies lobbied against restrictions on so-called emotion recognition technologies by arguing that they can assist autistic people. Access Now, in collaboration with EDRi, reached out to the European Disability Forum and the European Council of Autistic People (EUCAP) to draw on their expertise and found they were sceptical about the need for – and the feasibility of – such technology. They worked collectively to adopt a common position on this issue on the AI Act, resulting in safeguards being adopted into the new law.