Understanding health services and puberty for autistic adolescents and those with disability: A scoping review to inform occupational therapy practice

INTRODUCTION: Puberty is a transitional period presenting challenges for autistic adolescents, adolescents with disabilities and their families. There are opportunities for occupational therapy to provide support to this cohort as adolescents navigate the complexity of puberty transition. However, there is a lack of published evidence and knowledge translation to guide practice. It is important to scope the literature to gain understanding of the pubertal experiences of autistic adolescents, adolescents with a disability, their families and services accessed for support. The aim of this scoping review was to determine the current role and practice of health professionals supporting autistic adolescents and/or adolescents with disability and their families through puberty, to inform occupational therapy practice. METHODS: A scoping review was conducted following JBI protocols. Four databases were searched systematically. Key search terms included health professions, terminology for the stages and process of puberty, and neurodevelopmental disorders and disabilities. Eligible articles included literature published within the last 20 years, focused on the experience or recollection of people with disabilities undergoing puberty and experience of parents, caregivers or health professionals who support them. CONSUMER AND COMMUNITY INVOLVEMENT: There was no direct consumer or community involvement within this scoping review. FINDINGS: After screening 795 articles, 90 full texts were reviewed, and 17 were retained. Studies included a range of health professions, with two studies focused solely on occupational therapy. Themes identified included (1) challenges experienced by adolescents; (2) parental concerns and caregiver burden; (3) the importance of education for clients, caregivers and families; and (4) perspectives and practice of health professionals. CONCLUSION: Autistic adolescents and people with disability experience additional challenges during puberty and require additional support needs. There is a lack of literature focusing specifically on the role of occupational therapy in this field. Evidence from health services can more broadly inform and guide future direction for occupational therapy practice. There is a need for puberty-focused training for allied health professionals and an opportunity for occupational therapy to position itself at the forefront of evidence-based, family-and-client-centred practice in puberty-related care.