PTOTSLPQualitativeAutism : the international journal of research and practice2021

Exploring an e-learning community's response to the language and terminology use in autism from two massive open online courses on autism education and technology use.

Jiedi Lei, Lauren Jones, Mark Brosnan

PMID 33567892

WHAT IT FOUND

Learners in autism education courses found no single preferred term.

Self-advocates and families mostly chose 'autistic', while professionals varied. All groups agreed the key rule is to ask the individual what they prefer and respect their choice over any standard terminology.

Key findings

01Self-advocates and family/friends showed a clear preference for identity-first language (using the term 'autistic'), whereas professionals showed a more evenly distributed preference across various terms.

02Across all stakeholder groups, the consensus was to respect the individual's preference, with the default action being to actively seek out the preference of the autistic individual or their family when uncertain.

03Participants noted that using medicalised language or terms like 'disorder' can create stigma and lead to diagnostic overshadowing, where other mental health issues are misattributed to autism.

STILL TO COME

How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs

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What it does not show

The study relied on self-selected comments from online courses, meaning only those with strong opinions likely participated. Self-advocates were heavily under-represented (only 37 of 803 learners), and most were adults, so the findings may not reflect the views of autistic children and young people. Detailed demographic data (age, sex, country) for the commenters was unavailable. Family and friends were analysed as one group, masking potential differences between parents and other relatives. Participants were learners in courses focused on education and technology, which may bias the sample towards those interested in inclusive practice.

Declared interests

The authors declared no conflicts of interest. The MOOCs were funded by ERASMUS+ grants.

The easy way to misread this

Do not interpret this as a study proving that one term is clinically superior. It reports the preferences of a specific group of online learners, mostly professionals and parents, with very few autistic adults, so it does not establish a universal rule for all autistic patients.

Read it on PubMed →