Social participation, defined as a person’s involvement in activities providing interactions with others in society or the community,¹ has positive associations with quality of life for children with disabilities; it provides the basis for creating social connections, encouraging community participation, providing social identity, and developing new or existing skills (e.g., emotional and behavioral control, physical coordination, pragmatic communication, social cooperation).^2–7 Examples of social participation include participation in physical activities or group sports, outings with friends, classes or lessons (e.g., music lessons), religious organizations, volunteer work, or employment.^8–10 However, studies have shown children with fragile X syndrome (FXS) and other developmental disabilities (DD) such as autism spectrum disorder (ASD), intellectual disability (ID), developmental delay, speech/language impairment, and cerebral palsy, participate in social and recreational activities at lower rates and have fewer social relationships than their typically developing peers.^2,10–14.

Myriad factors affect social participation for individuals with ID and DD. For example, Buttimer and Tierney⁸ found that students with mild to moderate ID reported time constraints, lack of transportation, and feeling restricted by parents from engaging in activities as barriers to leisure participation. A study by Smith et al.¹⁵ exploring social participation experiences of families raising children with ASD found that the child’s difficulty in understanding or meeting social expectations, along with the community’s lack of sensitivity to family circumstances, and the family’s difficulty in managing their child’s behaviors served as barriers to social participation. Merrells et al.⁵ investigated social inclusion experiences from the perspective of young adults with ID and found that social participation and friendships may be negatively influenced by a lack of integrated programs providing interaction with people without DD, exclusion or rejection from employment opportunities, and lack of access to communication devices (e.g., cell phones, social media). However, some participants in this study indicated preferring isolation or not having access to these devices, suggesting social participation may also rely on the individual’s interests. Other factors potentially impacting social participation include availability and adequacy of resources such as programs, services or finances, the individual’s ability to meet activity demands, and support from friends, family, or the community.^6,7,10,16

FXS is the leading single-gene cause of ID and ASD¹⁷ and is commonly associated with behavioral and emotional conditions such as attention problems, hyperactivity, anxiety, hyperarousal, irritability, aggression, self-injurious behaviors, and obsessive-compulsive disorder (OCD) or perseverative behaviors.^18–20 FXS is also characterized by social avoidance (e.g., poor eye contact), social withdrawal, sensory integration dysfunction, and language deficits, which can interfere with appropriate social behaviors and persist into adulthood.¹⁹ Studies have shown that conditions such as anxiety or depression (among females with FXS), aberrant behaviors such as lethargy, irritability, or hyperactivity, and delayed social or functional skills are associated with reduced quality of life and can predict level of independence for individuals with FXS in adulthood.^21–23 However, studies have shown involvement in social activities is associated with fewer depressive symptoms among adolescents with ASD²⁴ and young adults with DD.²⁵ Additionally, participating in group social activities provides an opportunity for children with disabilities to develop and strengthen the skills necessary for independence. Adolescents with disabilities have reported feeling more independent and self-reliant after participating in summer camp activities as they had to manage their daily living skills and explore their physical ability without the help of a caregiver.⁷

Demographic and clinical characteristics for the 830 FORWARD participants with FXS are shown in Table 1 (75.8% male; 72.2% non-Hispanic [NH] White, 13.2% Hispanic, 6.8% NH Black, 4.7% NH other race, 3.1% NH multi-racial). Almost all males (97.8%) and 75.0% of females had DD or ID. About two thirds of males and one third of females had co-occurring ASD. Although nearly all males and females had at least one co-occurring behavioral or emotional condition (99.1% and 98.4%, respectively), males tended to have a higher cumulative number of these conditions. Attention problems or hyperactivity, hypersensitivity, OCD or perseverative behavior, and emotional dysregulation behaviors were more common in males; mood swings or depression were more common in females.

Among children with FXS, 81.7% participated in at least one type of social activity. The most common type of social activity was physical (65.8%), followed by peer (39.9%) and religious (31.3%). A higher percentage of female children participated in peer activities (49.5% vs. 36.9%), religious activities (37.6% vs. 29.2%), community-based activities and therapies (32.0% vs. 20.3%), and school-based clubs and programs (33.0% vs. 17.9%) compared to male children (Table 1).

Results for the model examining the associations between demographic and clinical characteristics and overall social participation are shown in Table 2 among the 690 children with no missing data on variables in the model; results stratified by sex are available in Supplemental Table 2. Adjusted model results showed no significant differences in overall social participation by child’s age group, race/ethnicity, or ASD status, in total or stratified by sex. However, children whose caregivers had less than or equal to a high school diploma (aPR = 0.74, 95% CI = 0.62–0.88) or some college (aPR = 0.91, 95% CI = 0.83–1.00) were less likely to participate in social activities compared to children whose caregivers had an advanced degree. Level of intellectual function and behavioral and emotional conditions were also associated with social participation. Children with severe to profound ID (aPR = 0.57, 95% CI = 0.43–0.77) or moderate ID (aPR = 0.92, 95% CI = 0.83–1.02) were less likely to participate in social activities relative to children with no ID. Children with hypersensitivity were more likely to participate in social activities relative to peers without hypersensitivity, within the total (aPR = 1.10, 95% CI = 1.02–1.20; Table 2) and male (aPR = 1.14, 95% CI = 1.03–1.28; Supplemental Table 2) samples. Children with anxiety (aPR = 1.13, 95% CI = 1.01–1.27) were also more likely to participate in social activities than children without anxiety. Lastly, children with emotional dysregulation behaviors (aPR = 0.93, 95% CI = 0.87–1.00) were less likely to participate in social activities than children without these conditions. Except for hypersensitivity, aPRs stratified by sex were similar to overall aPRs, although with lower precision due to smaller sample sizes. Unadjusted analyses indicated Hispanic race, borderline or mild ID, ASD diagnosis, and OCD or perseverative behaviors had significant associations with social participation; similar estimates to adjusted analyses were observed for all other characteristics.

Demographic characteristics associated with social participation varied by type of activity among the 714 children with no missing data on variables in the model (Table 3; Supplemental Table 3). Children ages 14–17 were more likely to participate in physical activities than children ages 5–10 (aPR = 1.12, 95% CI = 1.00–1.25; Table 3). Children ages 11–13 (aPR = 1.79, 95% CI = 1.23–2.62) and ages 14–17 (aPR = 2.40, 95% CI = 1.75–3.28) were more likely to participate in school-based clubs and programs than children ages 5–10. Results were similar in sensitivity analyses restricted to children (n = 690, 96.7% overall; ages 5–10 years: 97.2%; 11–13: 96.2%; 14–17: 96.1%) who were ever in school (data not shown).

Hispanic children were less likely to participate in physical (aPR = 0.74, 95% CI = 0.60–0.91) and religious activities (aPR = 0.59, 95% CI = 0.36–0.94) than White, NH children. Black, NH children were more likely to participate in religious activities (aPR = 1.50, 95% CI = 1.07–2.09) and less likely to participate in school-based clubs and programs (aPR = 0.33, 95% CI = 0.11–1.02) than White, NH children. Female children were more likely to participate in school-based clubs and programs (aPR = 1.57, 95% CI = 1.19–2.06) and community-based activities and therapies (aPR = 1.51, 95% CI = 1.12–2.03) and less likely to participate in physical activities (aPR = 0.89, 95% CI = 0.79–1.01) than male children. Lower educational level of the primary caregiver was associated with lower participation in each type of activity.

Several clinical characteristics were also associated with specific types of social participation (Table 3). Children diagnosed with ASD were less likely to participate in physical activities (aPR = 0.92, 95% CI = 0.83–1.03), peer activities (aPR = 0.74, 95% CI = 0.61–0.90), school-based clubs and programs (aPR = 0.61, 95% CI = 0.46–0.83), and religious activities (aPR = 0.66, 95% CI = 0.52–0.85) compared to children not diagnosed with ASD. Children with attention problems or hyperactivity were less likely to participate in physical activities (aPR = 0.83, 95% CI = 0.73–0.93), peer activities (aPR = 0.79, 95% CI = 0.63–0.98) and religious activities (aPR = 0.75, 95% CI = 0.56–1.00) compared to children without these conditions. Children with hypersensitivity were more likely to participate in physical (aPR = 1.18, 95% CI = 1.04–1.33) and peer activities (aPR = 1.30, 95% CI = 1.06–1.60) compared to children without hypersensitivity. Children with anxiety were more likely to participate in peer (aPR = 1.39, 95% CI = 1.05–1.84) and religious activities (aPR = 1.46, 95% CI = 1.02–2.07) than children without anxiety. Children with OCD were less likely to participate in physical activities than children without OCD (aPR = 0.89, 95% CI = 0.80–1.00). Lastly, emotional dysregulation behaviors were associated with decreased participation in peer activities (aPR = 0.73, 95% CI = 0.60–0.90). Unadjusted analyses produced similar estimates to adjusted analyses for most covariates; unadjusted associations between activity types and hypersensitivity and anxiety were not statistically significant (Supplemental Table 3).

Distributions of caregiver-reported barriers are shown in Table 4. Within the total sample, caregivers most frequently reported behavioral issues (72.2%), time constraints (64.4%), and lack of community resources (64.2%) as barriers to social participation (Table 4). Comparisons by sex indicated caregivers more frequently reported behavioral issues and lack of community resources as barriers to social participation for male children.

Table 5 depicts the prevalence of caregiver-reported child behavioral issues as a barrier to social participation stratified by the child’s intellectual function, overall, and further stratified by sex. Behavioral issues were moderate to huge barriers for 59.0% of children with moderate ID and 75.9% of children with severe to profound ID, with similar results for males and females. For children with DD, 61.5% of caregivers reported behavioral issues as a moderate to huge barrier to social participation, primarily among males.

Social participation has positive associations with quality of life for children with disabilities, and while most children with FXS in this study participated in at least one activity, those with more severe clinical characteristics were less likely to engage socially. Our findings suggest severe or profound ID and emotional dysregulation behaviors, specifically irritability, aggression, agitation, and self-injury, are significant barriers to participation. These insights not only expand on prior research but also highlight the need for targeted public health interventions, such as adaptive programs, that promote inclusive social activities for children with FXS.

While nearly all children (96.7%) were currently or previously enrolled in school, children participated in school- and community-based activities less often than other activities, indicating an opportunity to increase adaptive programming at easily accessible locations. Creating adaptive programs or modifying existing programs to accommodate and meet the interests of children with ID and/or regulatory issues may support families and children seeking to participate in social activities. Implementation of evidence-based practices such as cooperatively structured activities and peer network interventions into adaptive programs can further promote social inclusion at school and within the community.^28,29 These practices provide an opportunity for individuals with ID to engage with individuals without ID by encouraging collaboration and social connectedness through staff-facilitated activities.

Caregivers most often reported behavioral issues as a barrier to social participation, followed by lack of community resources and time constraints. Some evidence-based strategies to address behavioral issues are environmental modification, mindfulness approaches, and positive behavioral supports.³⁰ Educating and training activity staff on these strategies may help reduce behavioral interference with social participation for children with FXS. Lack of community resources may refer to a lack of access to or availability of programs, services, information, or social support.^10,31 Time constraints may be in the form of time spent caring for the person with a disability, competing priorities such as work or attending medical appointments or therapies over social activities, and time spent traveling to the location of activities.^8,32 Informal respite services, such as caregiver cooperatives, may be beneficial for families of children with FXS interested in participating in social activities. Through caregiver cooperatives, families create support systems with other families who are familiar with their child’s needs and routines. Families can provide support by sharing information, running errands, or providing childcare or transportation. Formal respite services, such as group respite or day care programs, can provide additional opportunities for children with special healthcare needs to socialize with other children with similar needs while providing caregivers with relief.³³ Group respite programs often take place in community-based locations, such as assisted living facilities or community centers, and offer a variety of social, recreational, and therapeutic activities facilitated by trained professionals.

Demographic differences were observed for social participation by activity type. Previous literature suggests activity participation decreases with age among children³⁴ and adults³⁵ with disabilities. However, the results of this analysis indicate younger children were less likely to participate in physical and school-based activities compared to older children. Results restricted to children ever enrolled in school showed similar associations between age and school-based activities among children. Therefore, lower participation among younger children may be due to a lack of available resources such as programs or services, the programs’ age requirement for participation, or the ability to meet the demands of the activity. Research has shown adolescents with disabilities participating in social activities have an opportunity to develop and strengthen the social and daily living skills necessary for independence in adulthood.⁷ For children interested in social activities but whose social anxiety or sensory integration problems may pose as barriers, intensive therapy focused on improving social deficits and strengthening language or motor abilities may be beneficial. Further investigation is needed to better understand the barriers experienced by younger children with FXS.

Although school enrollment was similar across race and ethnicities, Black, NH children were less likely to participate in school-based activities. However, they were more likely to participate in religious activities, suggesting participation in certain activity types may be influenced by the individual’s preferences and cultural background. Resource availability may also vary by racial-ethnic group³⁶ and may further explain the lower social participation rates observed for Hispanic and NH Black children in this analysis.

Adjusted regression models indicated children with clinical characteristics such as hypersensitivity and anxiety were more likely to participate in social activities, specifically in physical, peer, and religious activities, than children without these conditions. However, previous studies examining activity participation among children with ASD have shown sensory sensitivities and anxiety may interfere with activity participation.^37–39 Factors such as the location of activities (e.g., in the home versus community), the type of sensory sensitivity (e.g., tactile, auditory, visual) or anxiety symptoms (e.g., performance, separation, uncertainty), or the severity of symptoms have been shown to play a role in activity participation. These results should be interpreted with caution given we did not have detailed information on the specific activity, the child’s symptoms, or the temporality of hypersensitivity and anxiety presentation and social activity participation; additionally, hypersensitivity and anxiety were not significantly associated with physical, peer, and religious activities in unadjusted models. It is possible that children in this analysis may have increased anxiety or hypersensitivity because they were participating in social activities, their symptoms were ameliorated by the structure or setting of the activity (i.e., where the environment is controllable and predictable), or that their symptoms did not limit their participation in these types of activities. Although our data cannot answer these questions, additional research is needed to understand how these factors affect social participation among children with FXS and hypersensitivity or anxiety.

Most children with FXS participated in one or more activity, with physical activities most common and other school- and community-based activities least common. Factors such as having severe or profound ID or emotional dysregulation behaviors were associated with lower social participation, and caregivers often reported behavioral issues, lack of community resources, and time constraints as barriers. Increasing adaptive program availability, activity staff education and training, and respite support services may increase social participation among children with FXS. These findings can be used to support inclusive programs and practices to help all children with FXS thrive.