"Autism" Researchers Misrepresent Autism Spectrum Disorder by Overwhelmingly Excluding Persons with ASD AND Intellectual Disability

Global estimates indicate 50% of persons with Autism Spectrum Disorder also have an Intellectual Disability yet they are excluded from 94% of "autism" research studies. Media accounts of "autism" typically portray persons with autism as high functioning.  Unfortunately Academic Researchers also often misrepresent autism through selection bias and failure in all cases to provide information indicating a lack of generalization of  the  study. 

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Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis

Ginny Russell 1, William Mandy 2, Daisy Elliott 3, Rhianna White 3, Tom Pittwood 4, Tamsin Ford 1

Affiliations 

• PMID: 30867896
 
• PMCID: PMC6397505
 
• DOI: 10.1186/s13229-019-0260-x

Free PMC article

Abstract

Background: Current global estimates suggest the proportion of the population with autism spectrum disorder (ASD) who have intellectual disability (ID) is approximately 50%. Our objective was to ascertain the existence of selection bias due to under-inclusion of populations with ID across all fields of autism research. A sub-goal was to evaluate inconsistencies in reporting of findings.

Methods: This review covers all original research published in 2016 in autism-specific journals with an impact factor greater than 3. Across 301 included studies, 100,245 participants had ASD. A random effects meta-analysis was used to estimate the proportion of participants without ID. Selection bias was defined as where more than 75% of participants did not have ID.

Results: Meta-analysis estimated 94% of all participants identified as being on the autism spectrum in the studies reviewed did not have ID (95% CI 0.91-0.97). Eight out of ten studies demonstrated selection bias against participants with ID. The reporting of participant characteristics was generally poor: information about participants' intellectual ability was absent in 38% of studies (n = 114). Where there was selection bias on ID, only 31% of studies mentioned lack of generalisability as a limitation.

Conclusions: We found selection bias against ID throughout all fields of autism research. We recommend transparent reporting about ID and strategies for inclusion for this much marginalised group.