Representativeness of autistic samples in studies recruiting through social media.
Eya-Mist Rødgaard, Kristian Jensen, Kamilla Woznica Miskowiak and 1 others
PMID 35809003WHAT IT FOUND
Autism studies recruiting through social media often had more women than men, later diagnoses, higher education, lower unemployment, and far fewer people with intellectual disability than expected.
These samples may not represent all autistic people.
Key findings
01Across 36 included studies, autism samples recruited through social media were not representative of the autism population as a whole.
02The median male-to-female ratio was 1:1.6, while previous estimates put the population male-to-female ratio at about 3:1.
03Across the included studies, the median mean age of diagnosis was 29.8 years, the median percentage with a college or university degree was 60.2%, the median unemployment percentage was 28.7%, and the median percentage with intellectual disability was 3.8%.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The search used one database and may have missed studies that recruited online. Many included studies gave very little demographic information about their samples. Most studies used several recruitment channels, so the paper cannot tell whether social media alone caused the bias. Education and unemployment were defined differently across countries and studies. The paper cannot determine why social-media recruitment produces these sample patterns.
Declared interests
The study was funded by Lundbeckfonden. Kamilla Woznica Miskowiak reported consultancy fees from Lundbeck A/S and Janssen-Cilag A/S in the past 3 years. Eya-Mist Rødgaard, Kristian Jensen, and Laurent Mottron reported no conflicts.
The easy way to misread this
Do not conclude that autism is mostly female, diagnosed in adulthood, and highly educated. These patterns came from social-media-recruited samples and do not show what the whole autism population is like.