Parenting a child with autism spectrum disorder (ASD) can be stressful, and accessing services can add to this stress. Self-efficacy, agency and advocacy are important for parents when accessing and using services. To develop insight into parental advocacy, a meta-synthesis was undertaken to consolidate the literature focussing on parents' experiences of advocating for their child with ASD. A qualitative meta-synthesis was conducted. Fifteen databases were systematically searched by using key terms related to ASD, children, parents/carers, advocacy and qualitative studies. Twenty-four studies were identified and appraised using an adapted version of the Critical Appraisal Skills Programme tool. Data were synthesized into themes through the steps of review, meta-aggregation, integration and interpretation. Two overarching concepts emerged, illustrating both the challenging nature of advocacy and the associated personal and societal benefits. These two concepts are supported by eight themes: a life-long, all-encompassing challenge; advocacy as a parental coping strategy; advocacy involving working to create a future; balancing roles and needs; isolation versus support; personal impacts of advocacy; benefits of advocacy; and the barriers to advocacy. The experience of advocacy for parents with a child with ASD is complex and intensive, presenting both personal and societal benefits, as well as challenges for parents. In supporting individuals with ASD and family well-being, service providers need to have an understanding of the advocating role of parents and ensure that opportunities exist for their voices to be heard during service delivery.

The diagnostic process for children with autism can be complex for parents to navigate as they advocate for their child in order to obtain answers to their concerns, and receive the subsequent support they need. Gaining an understanding of parents’ experiences during this process, will assist service providers in supporting families adequately. This systematic review was undertaken to consolidate in‐depth qualitative data from parents of their experience of advocating for their child with autism, during the process of diagnosis. A qualitative meta‐synthesis was conducted, whereby fifteen databases were systematically searched. Twenty‐two studies were identified and appraised using an adapted version of the Critical Appraisal Skills Programme tool. Data were synthesised into themes through the steps of review, meta‐aggregation, integration, and interpretation. The date range of the included studies spans 1999–2016. The voices of 1,178 parents are presented in this review describing their experiences in two overarching themes: “Pathway to diagnosis—Confusion and not feeling heard”; and “Pursuing diagnosis—Resilience and commitment.” Each one of these main themes had sub‐themes. Our findings highlight the intense emotional journey for parents during identification of their initial concerns and the formal process of diagnosis, and their perceptions of not being supported by others on this journey. This review illustrates the significant impact that positive experiences with first‐line professionals have during the process of diagnosis, and how these experiences lay the foundation for all future relationships with other service providers. As a result, awareness of parents’ experiences will assist service providers to reconsider their communication style, information sharing, provision of support and to incorporate parents’ contributions in facilitating a more streamlined and more supportive process of diagnosis.

The purpose of this review is to present a new framework, EI SMART (early intervention: sensorimotor development, attention and regulation, relationships, and therapist support) for identifying key components that could contribute to more effective interventions for infants at high risk of atypical neurodevelopmental outcome. We present a clinical consensus of current challenges and themes in early intervention, based on multidisciplinary group discussions, including parents of high‐risk infants, supported by a literature review. Components to include in early intervention programmes are: (1) promotion of self‐initiated, developmentally appropriate motor activity; (2) supporting infant self‐regulation and the development of positive parent‐infant relationships; and (3) promotion of early communication skills, parent coaching, responsive parenting, and supporting parental mental well‐being. Such multimodal programmes may need to be evaluated as a package. What this paper adds Early intervention programmes should address sensorimotor development, attention, self‐regulation, and early communication skills. Therapist input to the programme should include parent coaching and support for parental mental well‐being.

Although parents of very preterm infants have higher rates of maternal mental health challenges, mothers of full-term infants at high social risk are also impacted.