Parents’ experiences with early intervention for children (0-6 years) with autism: A qualitative evidence synthesis

Introduction

Early intervention for children with autism (autism spectrum conditions) refers to interventions initiated early in the developmental trajectory, before school age, with the aim of supporting the child’s learning, communication, social interaction, play, independence, and everyday functioning. Such interventions may be implemented based on observed developmental deviations, often before or shortly after an autism diagnosis has been established, and are grounded in different theoretical approaches, particularly developmental psychology and applied behaviour analysis. In practice, early intervention is often designed as models composed of multiple intervention components intended to achieve broad learning- or developmental effects on core features of autism.

As part of the development of a national guideline for the assessment and follow-up of people with autism, the Norwegian Directorate of Health requires research-based knowledge on how parents experience early intervention for young children (aged 0–6 years) with autism. Parents’ perspectives are central, both because parents know their children best and because they often play an active role in implementing the interventions in everyday life.

Aim and research question

The aim of this systematic review was to identify, analyse, and synthesise qualitative research exploring parents’ experiences with early intervention for children with autism aged 0–6 years. We addressed the following research question: How do parents experience early intervention for preschool children with autism? Early intervention was defined as model-based interventions designed to achieve broad learning or developmental effects on core characteristics of autism and initiated before the age of six.

Methods

We conducted a systematic review of qualitative studies. Systematic literature searches were carried out in six databases in December 2025. We included primary studies addressing parents’ experiences with comprehensive early intervention approaches for children aged 0–6 years diagnosed with autism. Eligible interventions were model-based approaches initiated before six years of age and aimed at supporting development and functioning across multiple domains (language, social communication and interaction, play, cognition, or adaptive functioning). Only studies with a qualitative design published in peer-reviewed journals between 2015 and December 2025 were included. Studies had to be written in English or a Scandinavian language.

Titles and abstracts identified through the searches, followed by full-text versions of potentially eligible publications, were independently assessed against the inclusion criteria by two reviewers. Two reviewers independently appraised the methodological quality of the included studies using a checklist for qualitative research and discussed each study against the criteria before reaching a consensus. A third reviewer was consulted in cases of disagreement.

We conducted a thematic synthesis in three stages. Confidence in the review findings was subsequently assessed using GRADE-CERQual.

Results

The literature search identified 2,018 unique references. A total of 22 publications (n = 21 studies) were included in the review. Five studies were excluded from the qualitative analysis due to substantial methodological limitations. The analysis was therefore based on 16 studies (n = 17 articles) with minor or moderate methodological limitations. The studies were conducted in the USA (n = 6 studies), New Zealand (n = 3), Canada (n = 2), Sweden (n = 2), Denmark (n = 1), the Netherlands (n = 1), and Australia (n = 1). The studies included 207 parents aged 23 to 58 years, of whom 72 % were mothers, and 165 children with autism. Fourteen studies included families with immigrant and/or ethnic minority backgrounds.

The studies covered various early intervention models. Most explored parents’ experiences with Naturalistic Developmental Behavioral Interventions (NDBI) (n = 10 studies), while the remainder explored experiences with mediated learning principles (n = 2), applied behavior analysis procedures (ABA) (n = 2), and combined models (TEACCH and NDBI; ABA and NDBI) (n = 2). The interventions were delivered in person or digitally, individually and/or in groups, across various settings such as the home, specialised clinics, and preschool, and were provided either by trained professionals, by the parents themselves, or through collaboration between parents and service providers.

The analysis resulted in 35 findings, organised into five overarching themes: (1) parents’ experiences and expectations prior to the intervention, (2) experiences with the intervention, (3), experiences related to parents’ competence, the parental role, and the parent–child relationship, (4) experiences related to the child, and (5) experiences related to the context in which the intervention was delivered. Findings related to Theme 1 showed that, prior to intervention, parents struggled to gain an overview of and access to appropriate services and called for clear information, support in selecting services, and flexible solutions adaptable to family life and work commitments (moderate confidence). Under Theme 2, most parents described early intervention positively, but some also reported challenges related to the complexity of the intervention models (moderate confidence). Home-based interventions were described as practical, cost-effective, and beneficial for the child, but could also involve disruptions and additional workload for parents (moderate confidence). Findings under Theme 3 indicated that parents experienced early intervention as enhancing their knowledge of autism and improving interaction skills that were easy to apply in everyday life to support their child’s development (high confidence). Parents also described an increased ability to understand their child’s signals and needs, improved relationships with their child, greater confidence in the parental role, and strengthened family cohesion (high confidence). Findings under Theme 4 showed that many parents perceived positive developmental progress in their children, particularly in communication and language, although with substantial variation in pace and extent (high confidence). Findings under Theme 5 revealed considerable variation in how well interventions could be adapted to families’ everyday lives (high confidence). A good relationship with professionals, individual guidance, and opportunities for sharing experiences with other parents were highlighted as prerequisites for interventions to function as intended (high confidence).

Discussion

This systematic review is based on qualitative studies involving parents of preschool children with autism and provides useful knowledge about parents’ experiences with early intervention across different intervention models. The confidence in the findings varies, but several key findings have high or moderate confidence. Overall, the findings highlight the importance of flexible, individually tailored early intervention approaches and the provision of clear information and guidance to parents. Strengths of the review include the use of transparent and systematic methods, including assessment of confidence in the findings using GRADE-CERQual. However, the evidence base also has limitations, including underrepresentation of fathers and families in vulnerable life situations, few critical voices, and insufficient reporting of recruitment processes, ethical considerations, and reflexivity in the primary studies. Most studies were conducted outside the Nordic countries, which limits transferability to the Norwegian context. although several findings are considered relevant to Norwegian services. The results can be used as part of a broader evidence base to inform the further development of practice and services in Norway. However, they cannot form the basis for assessing the effectiveness of early interventions, as the included studies employ qualitative designs. Furthermore, the findings cannot be used to draw conclusions about parents’ experiences with specific intervention models, as the analysis was conducted across different early intervention models.

Conclusion

This systematic review of qualitative studies (2015–2025) shows that the parents of preschool children with autism generally reported positive experiences with early intervention. The findings also revealed a wide range of experiences reflecting diverse parental preferences and a need for individual tailoring of interventions and flexibility within service provision. Parents reported increased knowledge of autism and ways of communicating with their child, contributing to greater confidence in the parental role and strengthened parent–child relationships. Parents also described positive developments in their children’s social skills and communication, although experiences varied. Although the evidence base is considered relevant, it is derived from a limited range of parental voices. Future research on experiences with early intervention should include a broader diversity of parents and place greater emphasis on parental burden, children’s perspectives, well-being and development, long-term outcomes, service providers’ experiences, and linguistic and cultural factors of importance for early intervention.