Introduction

Social Media and Developmental Communication Disability

For approximately 60% of the world’s population [1], social media is an integral part of daily life that is used for countless diverse purposes: enabling people to keep in touch, form new relationships, maintain and enrich friendships, exchange information, obtain education and employment, and solve problems [2]. Likewise, social media is used by people with developmental communication disability (i.e., associated with developmental disorders affecting communication, including cerebral palsy, intellectual disability, and autism) for social connectedness, self-advocacy, making new friends, keeping in touch, and obtaining information [3]. These purposes of using social media are particularly important in populations with developmental communication disability, who are at risk of social isolation and lacking access to information [4].

In 2019, Sweet and colleagues [5] reviewed 59 articles on the use of social media by people with disability and identified six key content themes related to using social media, with the strongest being ‘community’ (community-building around friendships, information, social support, identity, and advocacy). The authors concluded that social media supported access to new social opportunities, collaboration, advocacy, and support; and that information exchange on social media fosters important learning skills. However, research also shows that populations with developmental communication disability are often excluded from social media participation [6] for many reasons; including restrictions being placed upon them by gatekeepers, lack of access to the internet or the required computer devices such as computers and smart phones, lack of knowledge or skills and informed supporters for learning social media, and negative experiences online [2, 3, 7].

And yet, despite gaps in equitable access to social media, people with disability are over-represented in relation to problems with social media safety, cyberbullying, and the negative impacts of social media on mental health [8]. For example, research on the use of social media in young people has shown that people with disability, along with other minority groups, experience higher rates of bullying and abuse online compared to the general population [8], and greater impacts of social media addiction and harms affecting mental health [3, 9, 10]. Accordingly, there is growth in research on teaching people with developmental communication disability to use social media safely, including by peer- and older-age mentors and in providing supports and mentoring for safe and enjoyable use with positive impacts and few adverse outcomes reported [4, 11, 12].

In 2017, Hemsley and colleagues [13] synthesised the literature to identify barriers and facilitators to social media and propose an agenda for innovative research prioritising six main areas of inquiry: (i) legal issues: publicity/privacy in social media use; (ii) legal issues: social media publishing; (iii) ethical issues: conduct of social media research; (iv) ethical issues: autonomy and personal control; (v) social media skills; and (vi) safety issues. Providing 37 examples of future research questions across these six categories, the authors urged researchers in the field towards greater innovation, building on the foundations of social media research in disability, to (i) ‘implement a wider range of social media data collection and analysis methods that make use of social media data, and attend to diverse and multiple social media platforms’ (p. 20) and (ii) focus on safety and cyber-resilience across social media platforms; to develop interventions that help to prevent harmful social media incidents and reduce gatekeeping activities used to prevent people from ‘accessing social media in the same way as their peers without disabilities’ (p.20). Given that 5 years have passed since publication of the most recent review, we aim to review research since then on the use of social media by people with developmental communication disability to determine how far the research agenda proposed in 2017 [13] has been fulfilled and to further inform a future inclusive research agenda.

Materials and Methods

Search for Social Media Literature for Screening

Multiple methods were used to locate relevant literature for the narrative review. In June 2023, a targeted and purposive search of the Scopus scientific database was conducted by the first author (a speech-language pathologist) and the second author (an adult with developmental communication disability associated with cerebral palsy, who is a trained lawyer and person who uses augmentative and alternative communication (AAC)) using the following search terms in various combinations (social media, Facebook, Twitter, Instagram, communication disability, developmental disability, cerebral palsy, intellectual disability, and autism). This was done to locate original research of any design published in the last 5 years since publication of the most recent review in 2017 [13] and relating to social media and populations with developmental communication disability. Scopus was selected as a suitably inclusive scientific database likely to identify relevant studies reporting on original, peer-reviewed research. In addition to the Scopus search, a purposive forward and backward citation search of Hemsley et al. [13] was also conducted to locate studies meeting the inclusion criteria.

Screening

The titles of all potentially relevant articles located in Scopus and by the citation search (n = 820), containing no duplicates, were screened for inclusion by the first, second, and third authors arriving at consensus on the exclusion of studies not relating to social media, not being original research in English available in full text, or not specifically documenting the inclusion of populations with developmental communication disability. From these 820 studies, 81 potentially relevant studies were retrieved for full text review. On review of full texts, 40 of these studies progressed to data extraction, which involved creating an Excel spreadsheet of study populations, social media platform, and aims and methods for further consideration. Upon examination of the extracted data, 21 of these studies did not yield any results relating to the use of social media in populations with developmental communication disability and were excluded. The remaining 19 studies were included in the review, and the Mixed Methods Appraisal Tool (MMAT) [14] was used to appraise the quality of the studies; all of which were of a suitable design to answer their research questions with data analysed according to the design and interpreted appropriately.

Content Analysis

The full text files of the 19 studies were imported into NVivo for content coding by the first author, in consultation with the second author, to determine any categories of meaning in the results across studies [15]. This involved reading and re-reading the texts and applying NVivo codes to any identified units of meaning in the results of each study. These open codes were then arranged into categories, and themes identified that connected the categories, to explain the findings across the studies. In order to map how well the studies had met the research agenda proposed in 2017 [13] and identify persistent gaps in the research, the main focus of each study was also identified.

Results

Characteristics of the Social Media Studies

The characteristics of the 19 studies included in the review of social media and developmental communication disability are outlined in Table 1.

Table 1 Characteristics of studies included in the review relating to social media and developmental communication disability
Full size table

Dates and Countries of Publication

Dates of publication were relatively evenly spaced over the years since 2017. Studies were from Australia (n = 5), Sweden (n = 5), United Kingdom (n = 3), United States of America (n = 2), Germany (n = 1), Israel (n = 1). Korea (n = 1), and South Africa (n = 1).

Methods

Of the 19 included studies, the majority (n = 11, 58%) were qualitative, using in-depth interviews online or in person. Four were mixed-methods studies using surveys, scales, observations, and interviews; and four were quantitative studies using survey [28], single case multiple baseline design [13], or pre-experimental designs [12, 26]. Two studies made use of instant message chat for some participants with intellectual disability [22, 23] and one online focus group used a text-based forum on Wikispaces [21]. Only three studies (15.7%) collected the participants’ social media data: (i) Hemsley et al. [13] harvested Twitter data for quantitative network analysis and to triangulate with in-depth interviews; (ii) Kim et al. [27] had participants with ID show their accounts on social media to the researcher during in-person interviews about their use of social media; and (iii) in a mixed-methods study involving observations and interviews [18], researchers captured 269 photographs of social media data on the screens of participants (av. 18 per participant) for researchers to use ‘as memory aids and picture-based support during follow-up interviews and when transcribing field notes’ (p. 128).

Populations and Social Media Platforms

The 19 studies included a total of 1116 participants with disability and 982 non-disabled participants, being 148 parents, legal guardians, support workers, and managers of people with disability [11, 16, 17, 20, 25] and 828 adolescents without disability [17]. Four studies (21%) did not include any participants with disability and reported the views only of supporters (e.g., parents, direct support workers, or managers at centres) [16, 17, 20, 25]. None of the studies reviewed specified co-authorship was with people with developmental communication disability or that the studies were co-designed.

Of the 17 studies reporting on the age of the target population of people with disability, 10 related to adults, seven related to both adolescents and young adults, and none related only to children. Almost all the studies were small in scale (n = 16, 84%) with an average of 13.6 participants (range 3–30). Three larger scale studies involved a survey of 94 parents and legal guardians of adolescents with ID on their use of the internet [17], interviews with 571 adults with ID on their use of the internet during COVID-19 [2], and an anonymous survey of 370 adults with ID who had attended a healthcare facility in New York on their use of technology and social media [28].

The Main Aims of the Studies

Overall, the 19 studies focused on five main aims, being to: (a) understand the views and perspectives of participants with disability on social media specifically or the internet more broadly with questions on social media; (b) understand the views and experiences of parents/legal guardians, support workers, or managers on the use of social media by people with developmental communication disability (e.g., associated with cerebral palsy, intellectual disability, autism, and genetic syndromes); (c) identify barriers to and supports for the use of social media in this group; (d) determine the outcomes of any interventions aimed at improving social media skills in people with developmental communication disability; and (e) identify the outcomes or impacts of social media use on this group, including how social media influences relationships, social connectedness or inclusion, identity, or disability self- or community-advocacy online. Most studies related to any social media platform, with participants often reporting use of multiple platforms, and one study focused specifically on teaching adults who use AAC to use Twitter [4]. There were no studies focusing on the content published on or use of Instagram, TikTok, or YouTube specifically. One study [7] focused on the views of adults with ID on their use of the online social media for sexual expression. The authors reported that despite the interview guide being ethically approved, one gatekeeping disability organisation restricted the questions that could be asked of the adults with ID (and capable of giving informed consent) about their social media use and removed some as the questions deemed ‘“too personal” as they pertained to asking about participant’s sexual feelings” (n.p).

Since 2017, there has been encouraging growth in the representation of the views and experiences of people with developmental communication disability, reflected also in the concordant views of their supporters. When mapped onto the six suggested priority areas for future social media research [13] (see Table 2), it is evident that the research reviewed has advanced knowledge primarily in relation to the domains of ‘social media skills’ and ‘safety issues’, with some findings contributing important insights to the domains of ‘ethical issues: autonomy and personal control’ and ‘Legal issues: publicity/privacy in social media use’.

Table 2 Mapping of research findings according to suggested priorities for future research
Full size table

Content Thematic Analysis

The Upside: Purposes, Drivers, and Benefits of Social Media Use

Across participant groups, the studies identified a wide range of benefits of people with developmental communication disability using social media.

Fun, Entertainment, and Engaging with Interests

Social media use benefits included social media being fun, engaging, and entertaining (e.g., [2, 21, 29]). Participants reported using social media for amusement and as a solitary leisure pastime, using social media to engage in topics of interest (e.g., pets, sport, or food), to avoid feeling lonely, or ‘combat social isolation through creating ample opportunities for social inclusion’ [27] (p. 412). Social media provided ‘the opportunity to follow celebrities or idols or to join a group with a specific interest, such as pets’ [29] (p. 298). The entertainment value also related to posts being refreshed regularly ‘because they change everyday because people add new posts’ [21] (p. 35). People with communication disability reported using social media to play games ‘all the time’ [21] (p. 35) and looking through pictures and videos was highly valued. Parents also reported their sons or daughters feeling good through responses gained when sharing posts on Facebook. As one mother of an adult with ID reported ‘I think it [Facebook] is fantastic. He knows a lot of people who share the same interests, like football, and this is amazing’  [16] (p. 410).

Identity, Self-assurance, and Pride

Authors reported participants with disability gaining more confidence and caring ‘less about what other people thought about me after using Facebook’ [27] (p. 415) ‘just by the fact that someone knows about me [through Facebook] without even meeting me [makes me] a little proud’ [27] (p. 414). Grace et al. [11] also reported a mentor describing use of social media by the person with disability as ‘it was really worthwhile and I think there was a real sense of achievement once she’d done it’ (p. 10). Some participants enjoyed a feeling of acknowledgement [27], receiving many ‘likes’, getting compliments, feeling like a celebrity, and an associated increased confidence and pride [16]. Autonomy in the expression of disability identity, and disability pride, also appeared across several studies, in the sense that people with ID posting about their daily lives could choose whether to acknowledge their disability [24] in the context of the post and able to ‘exercise self-determination in letting others know of their disabilities on the internet’ [27] (p. 416). Chadwick and Fullwood [22] noted that ‘Accounts also incorporated the relational nature of the online self, that is, identity was defined by oneself and by inter-relationships and interactions with others’. (p. 57). This was supported by [27] who found that ‘flexible disability identity’ (p. 416) was supported by the finding that ‘participants had the autonomy to reveal or hide their disabilities … they integrated how they feel with how they present themselves’ (p. 416). In the same study, people with disability shared their stories on social media to ‘show people that I am here’ (p. 419) and one reported feeling ‘pride in taking part in supporting the rights of people with disabilities’ (p. 414).

Making Contact and Keeping in Touch

Across the studies, findings reflected that social media usage increased the number of communication partners for the person with communication disability and facilitated social inclusion by easing social engagement [26, 29]. People with disability appreciated the increased number of people contacted through social media, as one adult with cerebral palsy stated ‘I also like that if I send a message it can go to a lot of people not just one’ [21] (p. 35). Studies commonly reported that social media helped to make social interactions easier, enabling the person to keep in touch with others [2, 7, 11, 12, 21, 24, 29], meet more people (e.g., unknown people with similar interests) [7, 29], and strengthen connections to enrich friendships [24, 29]. While one study [12] showed that there was not a significant increase in communication partners after a social media training intervention, there was nonetheless an overall increase in the mean number of online communication partners and an increased social connectedness for participants with I/DD. A parent of a woman with ID reported ‘She manages to keep in touch with friends who don’t live with her, which is another bonus’ [16] (p. 410). Keeping in touch was a particularly important benefit [2, 7, 12, 21, 24], as one adult with ID described liking social media ‘because I can talk to and see pictures of friends and family who live far away, who I cannot see [in person] all the time’ [21] (p. 35).

Maintaining and Enriching Friendships

The ‘keeping in touch’ category was related also to the outcome of this contact being to enable, maintain, and enrich friendship connections [24]. Several studies reported that the use of social media not only helped people to make new contacts but also to develop and strengthen friendships online and in person (e.g., [12, 21, 24]). Being able to keep in touch frequently was also important, as one participant reported: ‘I do that as soon as I wake up – I check Facebook then when I sit and eat breakfast, I read the news, check Facebook again, at Instagram. Later, when I get to work, I check Facebook again [to see] if someone has made an update’ [29] (p. 297). Chadwick and Fullwood [22] reported that being connected online in social networks supported relatedness and sharing and ‘facilitated maintenance of existing social capital’ (p. 57). Ramsten et al. [29] also reported that social media ‘attracted their attention throughout the day. A common use … was to chat and stay updated with friends and relatives’ [29] (p. 297).

The Downside: Risks, Harms, and Risk Management in Social Media Use

Overuse, Compulsion, and Addiction

Notwithstanding several reports in the studies of the beneficial aspects of using social media, and being an important part of daily life, these aspects also contributed to some of the negative outcomes of that use. Addiction to social media appeared in three studies, with Kim and Qian [27] reporting that ‘participants experienced risks and addiction’ and were ‘aware of their unhealthy lifestyles related to SNS [social networking site] addiction’ (p. 418), and one participant felt addicted in using social media 10 h per day and another reported not getting sufficient sleep due to consistently reading Facebook. Chadwick [23] reported that ‘overuse’ of the internet and social media led to ‘reduced occupational, social and developmental opportunities’ (n.p) for six participants with ID; and Shpigelman et al. [16] noted that parents and legal guardians reported a family member or client with disability had ‘limited conceptual and social skills’, which could lead to unsafe use, citing a participant who reported ‘she can sit for one or two hours and look at photos or review the main page again and again, checking for new posts’ (p. 411).

Fear and Uncertainty Relating to Social Media Posts

For the most part, uncertainty about posts on social media related to strangers encountered online, inappropriate use, weird posts, unwanted contact, and posts with negative social outcomes on the person with disability. Raghavendra et al. [12] reported that some participants with disability ‘expressed concern about talking to new people online and feared that people might behave unpleasantly towards them’ (p. 119). The negative social impact of posts also created uncertainty. While considering social media to be problematic (e.g., in relation to unwanted contact or harmful content), people with disability reported controlling this and making decisions about friend requests based on their impressions of the content posted [27]. Fear of hacking by people not known to them also made some people with disability wary of friending new people: ‘all my information is in here …other people might hack my account and fraudulently post it. That is the unsafe part’ [27] (p. 417). Chadwick [23] reported that four participants ‘spoke about being confused by the behaviour of others online and being unsure how to interact and express themselves appropriately on social media’ (n.p.). The authors also reported that one adult with ID opted out of social media in self-imposed digital exclusion due to ‘worry and fears about possible risks’ (n.p.) and another opted out of Facebook use due to a friend’s negative experience ‘he was on Facebook and he had threatened, threatened message … and that’s why I don’t like about it … I can’t trust it. I don’t like it’ (n.p.).

Unwanted Contact and ‘Weird’ Content

As a participant with communication disability reported in Caron and Light [21], ‘the worst thing about social media is sometimes people use it inappropriately. Some people use it to pick on others and to make them feel hurt. I try to block those people’. (p. 35). Another participant reported that ‘[T]he bad thing about social media is that people you don’t want to talk to or know can contact you. This is annoying. They ask me questions I don’t want to answer. If it keeps happening, and I don’t know or like them, I block them on Facebook’. (p. 36). Six participants in Kim and Qian [27] felt discomfort in relation to swearing words and slang, as well as ‘too many people that I didn’t know and there were harmful contents. Weird things. Weird things on Facebook’ (p. 418), and another reported weird pictures posted by friends, prompting this participant to delete their account and make a new one, presumably to avoid such content from friends on the network. In the same study, the researchers reported participants drew upon their sense of uncertainty about the content posted in deciding whether to friend or follow a social media user: ‘I never request to follow people who post weird stuff on Instagram’ (p. 416).

Negative Impacts on Friendships

Social media use could also impact negatively on friendships, with some people with disability discovering themselves being ‘unfriended’ (erased from a social network) and becoming aware of this through real-life and somewhat awkward interactions with friends [18]. Caron and Light [21] reported one participant as stating ‘You can post things that upset people and everyone will see it. You need to be careful what you post’. (p. 36). Another participant reported ‘I had a bad experience. I got in a big fight with one of my good friends. I posted some things on Facebook that I am not proud I wrote. Everyone saw what I had posted. I felt so bad’ (p. 36) The authors also reported lack of direct contact with people as one of the negative aspects of social media use by young people with cerebral palsy; due to preferring in-person contact (particularly to see the person’s face while communicating for immediacy and context) or for trustworthiness in the communication: ‘people can lie easier online because you don’t see them. Talking in person is better because you have to be more honest’ (p. 36).

Negative Comparisons to Others’ Posts: Feeling Sad, Frustrated, and Inadequate

Adults with ID admitted to experiencing sadness or jealousy in response to reading social media posts through comparing their own social situation unfavourably: this included feeling inadequate in comparison to others with more followers or reading about other people’s romantic relationships and pictures of people dating making the participant ‘very sad. I keep thinking why I don’t have any friend’ and ‘I feel jealous that they always eat something I don’t get to eat. It doesn’t feel great. Travelling, pictures of them travelling are posted a lot and I can’t go but they go’ (p. 417).

Multiple Access Barriers and Gatekeeper Restrictions

There is some evidence to suggest that while social media is associated with several benefits, there remains lack of access for many people with developmental communication disability to the internet and social media (e.g., through not having access to technology or necessary supports) and gatekeeping to restrict access to social media. Bosse et al. [19] reported that the main reasons for internet use in adults with complex communication needs were for recreation, social connection, and information; and almost all the participants wished for greater access to the internet for a range of purposes. However, Patrick et al. [28] reported that most of the 370 survey respondents (86.8%) with ID reported not using social media, and that usage (primarily of Facebook and Instagram) was associated with age (59.2% 18–29 years, 28.6^ 30–39 years, 8.2% 40–49 years, 4.1% 50–59 years, and 0% aged 60 + years). Only 56% of participants used mobile devices including tablets and smartphones, and 67% of the non-internet users in the study had unused access to the internet through a computer or laptop at home or other additional options. Overall, there was ‘a general desire among participants to use the internet and social media more frequently with a specific focus on mobile devices’ [19] (p.1032).

While some studies reported some participants with ID restricting their own use of social media, others also outlined gatekeeping by parents or service providers (e.g., [7]) and disability service providers (e.g., [16, 25]) that impeded the person's access to social media. Shpigelman et al. [16] reported that 6 of 16 family members who did not fully support use of Facebook by their family member or client were concerned about privacy, security, and addiction, as one said ‘she doesn’t view her Facebook friends as strangers, so she might give them her phone number’ (p. 410), with infantilisation ‘This is like letting a little kid use Facebook. You don’t know who their friends are, what photos they receive or upload, what they tell about themselves. It is scary to think that someone might take advantage of this situation’ (p. 410). Another support worker viewed social media as a ‘waste of time’ (p. 410) in that ‘she could be doing sports, improving her reading skills – doing things that could be beneficial for her’ (p. 410). Furthermore, while parents and others supporting the person with I/DD attributed their lack of access to the internet being related to the person’s limitations (e.g., vision, learning, cognitive, social, and motor) [16, 28], Patrick et al. [28] concluded that ‘[t]echnology has been and continues to be underutilised by individuals with disabilities and barriers included lack of access, expense, training and support, and device maintenance’ (p. 3). Engwall et al. also outlined a range of service-level and policy barriers to people with disability using social media, including lack of internet connections at disability services, passwords to wi-fi only being known by the director, computer can only be used for documentation not by residents, people with ID not having their own email addresses, and lack of access to social media software applications (i.e., security firewall); as well as negative staff attitudes or lack of interest in digital activities, lack of encouragement by staff for the person with disability to engage in digital activities, or not providing the assistance required. The findings underscore the importance of addressing environmental factors (e.g., attitudes of parents and support workers, managers, policies, and funding for equipment) to be addressed and removed to increase access to the internet, including the provision of ‘hands-on, interactive components that allow for the development of the required skills as well as meeting daily needs’ (p. 4).

Literacy and Learning in Social Media

A recurring theme across studies was the appearance of literacy (reading and writing) barriers and facilitators impacting on the use of social media. Difficulty with literacy led to uncertainty as to the effectiveness of the person’s posts, as one person with disability explained: ‘I don’t always know the word and know how to spell it. I don’t always know if my posts are okay because of this’ [21] (p. 37). Kim and Quan [27] also reported that ‘most participants found it difficult to read and write content: “Too many difficult words. It is hard” (Participant 1) and “Uh… When people post something there are things I do not understand” (Participant 1), and “If they use some difficult words, I, don’t understand it so…that’s a little bit hard” (Participant 7)’ (p. 417). However, poor spelling was not always a barrier and ‘did not necessarily hinder text communication’ [29] (p. 296). One participant said: ‘P: It’s good. I try to spell but it’s difficult sometimes … Those who know me well know what I want to say’ (p. 296). Reading news sites linked into social media posts was also difficult due to low accessibility of news websites. Literacy difficulties also meant that people with ID might not post as often, as Shpigelman et al. [16] reported ‘He doesn’t like to write a lot and his typing is very slow. I assume he knows about the chat function and he does reply to messages that he gets, but he doesn’t initiate an online chat’ and ‘She writes short posts; she mainly uploads photos and then writes the place where each photo was taken’ [16] (p. 411). Problems with text meant that participants with ID were perceived to prefer visual-based functions (photos and videos). Some people with disability obtained assistance from other people to overcome the literacy barriers, help with reading or writing text, but ‘when help was not available, participants would simply not read the problematic text’ [27] (p. 417) or ask someone else (e.g., a trusted friend) what they thought. However, the use of assistive technologies (e.g., speech to text) to create written messages could also improve access to social media, for both writing and reading of content, and remove the reliance on family members for literacy assistance Raghavendra et al., [12] reported that ‘Participants found that their spelling difficulties no longer required them to obtain assistance from family members, as the technology supported their independent communication online’ (p. 118).

Implications for Interventions to Improve Social Media Use and Safety

While safety and risk have been the focus of recent social media research, several studies reviewed in this paper uncover evidence that perceptions of risk or harm in using social media are not necessarily seen in the realities of social media experiences—at least for participants with mild or moderate ID. Such risks are recognised as inherent to the nature of social media interactions and not insurmountable by people who also had developed skills in cyber-resilience and safety, signalling increased autonomy and self-determination when encountering the known harms of social media for any users of the platforms. It is not yet known whether the same barriers evidence to accessing social media (i.e., lack of access to technology, skills, funding, supports, restrictive control, and gatekeeping preventing use) will also impact the access of people with developmental communication disability to GenAI technological advances.

Limitations and Directions for Future Research

This review of social media research has limitations which mean its findings should be interpreted with caution. It was not a systematic review and included a purposefully selected range of relevant recent literature. Although the studies included met the aims of the review, some relevant studies with divergent findings and yielding additional insights might have been missed. Including only peer-reviewed journal articles, while excluding grey literature, is also a limitation through introducing publication bias.

Nonetheless, the findings of this review reflect that the methodologies selected for recent social media research are diverse as researchers made concerted attempts to obtain the views of participants with developmental communication disability using a variety of methods. The focus and subject matter of the research has expanded to focus not only on views and experiences but also on (a) training people to use social media safely and effectively and (b) the ways that they use social media for social connectedness, self-perception and identity, advocacy, access to information, and sexual expression. However, researchers continue to rely on interviews and surveys reporting on internet or social media use, and there is almost no analysis and reporting of the social media data produced by people with developmental communication disability in research about that use of the platforms. Qualitative findings on social media access and use are rarely triangulated with the social media data posted or read by the participants. Thus, the knowledge base is primarily informed by and reliant on either self-report or the reports of other people on social media usage and experiences. The research questions relating to social media skills and safety issues could be augmented by triangulation with social media data, either posts read by or directed towards people with developmental communication disability, or posts created and published by people with developmental communication disability or co-created and published with their supporters.

Exploring the Intersection of Generative AI and Social Media

This review highlights multiple facets of two sides (‘upside’ and ‘downside’) of social media use by people with developmental communication disability that should be heeded as social media technologies advance alongside and integrated with GenAI technologies. The intersection of social media and GenAI is important, considering that GenAI is used to (a) drive engagement through personalising content directed towards user preferences and patterns of use of the platforms [10, 30], (b) rapidly generate multimedia content for distribution on social media, and (c) analyse social media data rapidly [31]. However, the peer-reviewed literature does not, to our knowledge, yet include a scholarly overview or guidance on the issues related to the use of GenAI by people with developmental communication disability or in their speech generating devices or other assistive communication technologies. Since 2020, the COVID-19 global pandemic and associated social distancing and lockdown restrictions have stimulated substantial growth in the number of people with disability communicating online [32] for learning, social engagement, connection, and to reduce social isolation [32]. This substantial growth in internet use, including the use of social media for connection, has occurred contemporaneously with rapid development in mainstream artificial intelligence applications, particularly with the release by OpenAI of GenAI software DALL.E in January 2021 (for image generation) and ChatGPT in November 2022 (for generating text) software applications since used by many millions of users worldwide.

These advancements raise important issues when considering the safe use of social media by people with developmental communication disability, given that GenAI applications are now being built into and used in familiar mainstream communication technologies (e.g., internet search engines, word processing software, and social media) [33,34,35]. While consumers foresee positive uses for GenAI as an assistive technology, they are also cautious and concerned with good reason [36]. There is potential for GenAI to substantially increase the known risks of social media through enabling gamification and highly personalised content generation targeting vulnerable consumers [9]. This relates to the use of text- and image-based AI being used to rapidly generate and propagate misleading information online, driving content and engagement without sufficient human moderation. GenAI could substantially increase the volume of troublesome social media posts (e.g., trolling and cyberbullying), drive increased consumption and exacerbate social media addiction and its impacts [9], increase misinformation or disinformation, lack representation of minority populations, perpetuate health inequalities, and compound disabling attitudes and stereotypes [37,38,39].

Therefore, future research should explore the access, uptake, and use of GenAI in populations with developmental communication disability and their supporters, including access to the technology and digital literacy demands of GenAI (e.g., prompts and cues and commands) and patterns of use (e.g., editing, publishing, and acknowledging). Legal issues relating to intellectual property and ownership are raised in the use of GenAI to create works to be shared on social media. Asking people with developmental communication disability about their own experiences creating materials for publication on social media, researchers could focus on how the use of GenAI enhances or disrupts engagement with and enjoyment of social media and any reported benefits. As an example, this review noted that some people with developmental communication disability struggle with reading or writing social media posts, but that this does not necessarily stop them from engaging on the platforms for the sake of connection. This indicates a potential role for GenAI in supporting the literacy aspects of social media use. GenAI could increase access to information, education, or participation online, if it assists in making written information on social media easier to understand (e.g., through translation to easy read material) or produce.

Finally, since a prior call for innovative research [13], there remains a need for research that goes beyond the uptake and use of social media and into the legal and ethical issues confronting users with developmental communication disability and their supporters who have a variety of roles in supporting, enabling, or restricting access to social media platforms and use of the technology. The under-researched areas of inquiry outlined in this paper should therefore stimulate future co-designed research that is more inclusive of people with developmental communication disability on investigator teams so that lived experiences of both the upside and downside of social media can drive further research.