Temporal trends in online practices relating to autism and/or ADHD: a scoping review protocol

Abstract

Background Increasing rates of neurodivergence diagnosis have received much attention in recent months. This is particularly true of autism and/or ADHD self-diagnoses precipitated by social media use. Mainstream media - at a minimum in English-speaking Western countries - has been quick to report on this, and it is clear that a social media-facilitated phenomenon is underway. To date, however, empirical evidence related to increased visibility of, and engagement with, autism and/or ADHD 'content' online over time is lacking. Objective To map temporal trends in online practices relating to neurodivergence - specifically confined here to autism and/or ADHD - within the published literature. Areas of interest include: how framing of the concept(s) change over time; the theories represented within research on this topic; whether the focal point of these online practices has changed over time. Inclusion criteria Published literature from any country and any time period after 1991, that relate to online activity involving what currently is often referred to as 'neurodivergence' - here specifically confined to autism and/or ADHD. 'Online practices' encompasses any aspect of online communication, information-seeking, support-seeking, awareness-raising, or associated practices that take place online - via search engines, chat rooms, forums, social media platforms. Studies looking at other conditions under the neurodivergence umbrella, and those pertaining to cyberbullying and internet addiction only will be excluded. Methods Following the Joanna Briggs Institute (JBI) methodology for scoping reviews, 4 databases (Web of Science, MEDLINE, CINAHL, and APA PsycInfo) will be searched. Inclusion criteria will be used to screen for, and select, appropriate studies. The JBI extraction tool will be adapted for this particular review, and the relevant data from included studies exported to this document. Both narrative accounts and figures of the data trends will be synthesised and presented. Keywords: Social media, neurodivergence, self-diagnosis, online community, health information-seeking

Competing Interest Statement

The authors have declared no competing interest.

Funding Statement

The study was conducted as part of a funded PhD programme (funded by SGSSS/ESRC), but the systematic review itself did not receive any separate funding

Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

The study will use ONLY openly available human data that were originally sourced as part of the systematic review from 4 databases of published literature: APA PsycInfo, Web of Science, CINAHL, MEDLINE.

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

Yes

I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Yes

Data Availability

All data produced in the present study are available upon reasonable request to the authors

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