Sexual and Reproductive Health Services and Equity for Diverse Individuals on the Autism Spectrum

Background and Purpose:

Autistic teens and adults require sexual and reproductive health (SRH) services to achieve self-determination. Social workers can play an important role by providing and supporting access to these services. Autistic people are highly diverse in intellectual functioning (1/3 have intellectual disability (ID)), communication abilities, social motivation, and gender identity/sexual orientation (10-24% are LGBTQIA). Despite evidence of unmet SRH needs (e.g., high rates of sexual abuse), there is limited data on SRH service utilization in this population. We convened a stakeholder panel to investigate SRH service needs and access barriers/facilitators to understand how social workers can support autistic people’s health and social well-being.

Methods:

Participants were 15 service providers/experts, 18 autistic adults (over 1/3 LGBTQIA) and 15 parents of individuals with ID. Aims: Generate prioritized lists of (1) service needs and (2) modifiable barriers/facilitators to service access. A modified Delphi approach included interviews to generate service needs and access barriers/facilitators, and surveys to rate 1) importance of the service to SRH for autistic people, 2) importance of training in ASD/ID for providers of the service, 3) applicability to people with ID, 4) extent to which barrier/facilitator impacted service access, and 5) modifiability of barrier/facilitator. Descriptive statistics are presented.

Results:

80% or more strongly agreed to the importance of SRH services for autistic people including school-based sexuality education, services addressing socially inappropriate behaviors, and prevention of sexual abuse. Despite strong support, there were greater standard deviations (and less agreement) about services including gender affirming care, occupational therapy, and family planning services. Participants overwhelmingly agreed that sex education was important for people with ID, but were less certain about sex therapy (19% no/unsure), HPV vaccination (14% no/unsure), and OT (17% no/unsure). Top 5 barriers included lack of trained providers in autism/IDD, services not available, lack of accurate information about autism/sexuality, ableism, and cultural barriers. Top 5 facilitators included training on autism/ID for SRH providers and training on sexuality for autism/ID providers, accommodations, person-centered individualized care, family support for SRH services, online portals, and trauma-informed care. Participants were optimistic about the modifiability of these factors.

Conclusions and Implications:

Social workers have an important role to play in providing and facilitating access to SRH services for autistic people and require training on autism/ID and sexuality basics. Based on stakeholder input, we recommend accommodations including descriptions of facilities, policies, and procedures to enhance predictability and reduce anxiety; training in SRH and autism/ID, and care that is trauma-informed and LGBTQIA inclusive. Qualitative data indicates more focus is needed on case coordination, peer education and outreach, use of a life course developmental approach to educate parents about the need for lifelong sexuality education, and emphasizing consent over “compliance training.”