Robert F Kennedy Jr caused controversy in April by promising to find a cause for autism by September. Claims by the new US secretary for health and human services that autism is a “preventable disease” with an environmental cause, contradict a body of research that suggests autism is caused by a combination of genetic and external factors.

The US government announced that to support its new research effort into autism it would build a “data platform” involving data on claims, medical records and consumer wearables.

In this episode of The Conversation Weekly podcast, we speak to Amy Gaeta, a research associate at University of Cambridge in the UK who studies disability surveillance. Gaeta talks us through some of the strategies people are using to avoid potential surveillance, from self-diagnosis, to withholding information or being careful with the language they use to describe themselves.

This episode was written and produced by Katie Flood. Gemma Ware is the executive producer. Sound design and mixing by Eloise Stevens and theme music by Neeta Sarl. Read the f ull credits for this episode and sign up here for a free daily newsletter from The Conversation.

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