Evidence map›Paper›PMID 40936498›Full record

ArticleAutism : the international journal of research and practice2025

Autism ableism seen through research abstract contents: A mixed-methods analysis of language in NIH-funded genetic and genomic autism research.

Nicola Sugden, Lily S Barna, Kaylee Foor, John Kee, Chris Gunter

Abstract read
In one paragraph

Article in Autism : the international journal of research and practice, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors.

Nicola SugdenNational Institutes of Health, USA.ORCID 0000-0002-3431-4652
Lily S BarnaNational Institutes of Health, USA.ORCID 0009-0006-9792-0488
Kaylee FoorNational Institutes of Health, USA.
John KeeNational Institutes of Health, USA.
Chris GunterNational Institutes of Health, USA.ORCID 0000-0001-9369-7537

Funding

Genetics and Autism Literacy Survey (GALS)ZIAHG200410 · NHGRI · NATIONAL HUMAN GENOME RESEARCH INSTITUTE · PI GUNTER, CHRISTIE · 2021 to 2025
$2.3M
Intramural NIH HHS ZIA HG200410
6 · The paper itself

Abstract

In recent years, genetic and genomic autism research has come under increasing scrutiny, moving to the center of debates about ableism, neurodiversity, autism acceptance, and the future of research and care. At the same time, both autism research and genetics and genomics research have, as fields, begun to reckon with the significance of the language researchers use in the course of their work and the harmful ideas that may thereby be reinforced. Although the language of research cannot be assumed to straightforwardly correspond to individual researchers' beliefs, the presence of widespread ableist language may indicate structural and institutionalized ableism, including ableist assumptions at the foundations of research. We conducted a mixed-methods analysis of 166 genetic and genomic autism research projects funded by the US National Institutes of Health, in order to understand the prevalence of potentially ableist discourse, language, and stigmatizing language about autistic people. We found that such discourse and language was ubiquitous across our sample, including a discourse of prevention. This study lends empirical evidence to current debates about language in autism research. Evaluating language can prompt researchers and institutions to reflect on how they conceptualize, design, discuss, and pursue their work.Lay abstractGenetic research about autism is controversial. Researchers are starting to think more carefully about the words they use to talk about autism and the way they do their research. Past research has found that researchers sometimes write about autism in ableist ways. This means that they write about autistic people as though they are less important than nonautistic people. We looked at the way genetics researchers have written about autism in the paperwork for their research. We found that they often write about autistic people in an ableist way. We think that researchers should think carefully about the way they write about autistic people, and how they plan and do their research.

Indexed as

Autistic DisorderBiomedical ResearchGenetic ResearchLanguageSocial StigmaDisability DiscriminationGenomicsHumansNational Institutes of Health (U.S.)United Statesautistic identity topicsgeneticsqualitative researchthematic analysis methods

Identifiers

PMID40936498
PMCPMC12451615

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.