Autism: Why Lived Experience Is Data Research Needs

Every figure in this guide comes from a published source, linked where it appears and kept in CureCircle's evidence base with the source's own words. It is not medical advice. Read on 7 November 2026.

The questions that matter most in daily life, how long a diagnosis took, which kinds of support helped, what made school or work possible, which adjustments made a difference, are questions autistic people and their families answer best. That lived experience, recorded in a structured way and shared on the person's own terms, is evidence research needs more of.

How many people are on the autism spectrum

The Global Burden of Disease study estimated that 61.8 million individuals, one in every 127 people, were on the autism spectrum globally in 2021.

The records worth keeping

NICE's guidelines on autism in children and in adults describe the assessments that leave records:

• A screening questionnaire for adults: the Autism-Spectrum Quotient, 10 items (AQ-10), when autism is suspected.
• A written report of the diagnostic assessment: NICE asks that parents or carers, and if appropriate the young person, get a written report explaining the findings and the reasons for the conclusions.
• A care plan for adults, based on the comprehensive assessment and including any particular needs, such as adaptations to the social or physical environment.
• Medication reviews where medicines are used for co-occurring difficulties, such as reviewing the effects of an antipsychotic after 3 to 4 weeks.

The diagnostic report is often the single most useful document: it records how autism presents for that person. If you do not have yours, ask the service that assessed you for a copy.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. A complete story with the records the guidelines list comes to about $101 per licence on the benchmark today. Every line and its source is on the autism page.

A licence is not a one-off sale: the same de-identified story can be licensed to several research teams, and you earn a share each time.

On your own terms

You decide what to share, and you read the de-identified summary before anything goes anywhere: no names, no place finer than a country, no exact dates, and you can withdraw at any time. How de-identification works, and what it cannot promise.

You can tell your own story, or, as a parent or carer, the story of an autistic child or adult you support, as their parent or guardian or with their permission. The questions are then asked about them, and the record notes that a carer told it.

Start your story, or read what your health data is worth first.