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Patient-Reported Outcomes: Promis® Sexual Functioning for Autistic Adults
Little is known about the sexual functioning of autistic adults. However, research showing high rates of sexual victimization and low sexual knowledge suggests that access to high-quality sexual and reproductive healthcare is critical – yet there is evidence of lack of preventative care for teens and adults with autism. Barriers may include privacy concerns (e.g., if caregivers are present), communication issues (e.g., need for efficient verbal communication during brief appointments), or providers failing to ask about sexual health. Patient-reported outcomes (PRO) measures can strengthen outcomes measurement, treatment planning, progress monitoring, and quality improvement. The NIH developed the brief PROMIS® Sexual Functioning (SF) Screener with gender-specific items addressing sexual interest, sexual activity, and functioning (i.e., orgasm ability and pleasure, erection and lubrication, pain) to improve healthcare for people with chronic conditions.
Objectives:
(1) Examine whether the SF Screener was feasible/acceptable for autistic adults. (2) Compare scores to normative sample using PROMIS guidelines (e.g., mild-severe). (3) Investigate associations between SF Screener scores and age, relationship interest, and relationship satisfaction, and (4) gender and sexual orientation.
Methods:
203 verbal adults (18-65 years) with self-reported medical diagnosis of autism and ability to complete a 30-minute survey were recruited via the Interactive Autism Network. Participants completed a longer PROMIS survey and could choose not to answer SF Screener items. SF Screener items cover the previous month, are rated on 5-point Likert-type scales (1=never, 5=always), and provide T-scores (M=50, SD=10), with .5 SD from population norm mean indicating mild symptoms, 1 SD moderate, and 2 SD severe. Chi-square, Pearson correlations, and ANOVAs were used to address objectives (a priori α=.01).
Results:
Participants reported diverse gender (female=48%, gender diverse-GD=6%) and sexual orientation(LGBQ=20%, asexual=14%). Half were single (males=61%, females=42%, GD=33%; p=.007), 39% in a relationship, and 10% divorced/widowed.
(1) 99.5% completed the SF Screener. 93% finished in 1-2 minutes (M=1.9, SD=5.2). (2) Most reported solo or partnered sexual activity in the past month, with no gender difference (p=.028; M=58.5%, F=51.5%, GD=91.7%). Average scores for autistic adults were in the mild range for sexual interest (M=44.0,SD=10.7) and sexual satisfaction (M=44.5, SD=8.2) compared to normative sample. Orgasm ability, pleasure, genital functioning, and pain were within normal limits. (3) Greater desire for finding/maintaining a relationship was associated with higher sexual interest (Table 1). For sexually active participants, sexual satisfaction was correlated with orgasm ability, orgasm pleasure, and (for those in relationships) relationship satisfaction. (4) On average, cisgender women and asexual participants had lower sexual interest compared to others (p=<.001; Table 2). There were no other significant gender or orientation differences.
Conclusions:
The SF Screener appeared feasible, acceptable, and provides a private, non-verbal method for patient-provider communication about sexual activity and functioning. Fewer gender, sexual orientation, and age differences were found compared to research with non-autistic populations. More research is needed to understand the clinical significance of SF scores indicating elevated symptoms, particularly for people who identify as women or asexual. Measure inclusivity of transgender/non-binary populations will be discussed.