A 6-year follow-up of children assessed for suspected autism spectrum disorder: parents’ experiences of society’s support

Abstract

BackgroundEarly support and interventions are suggested to be important for children with autism spectrum disorder (ASD) and other developmental problems and their families. Parents are described to have a burdensome life situation where the child’s problems have a great impact on the family’s well-being.AimTo obtain increased knowledge of parents’ experiences of support and interventions 6 years after their child was assessed for ASD.Methods and proceduresA semi-structured questionnaire was sent to all parents (n=101) whose preschool children (<4 years of age) had been assessed for ASD about 6 years prior in Gothenburg, Sweden. The open-ended questions were analyzed thematically using a hermeneutic phenomenological approach.Outcomes and resultsParents of 56 children answered 30 questions about their experiences concerning support from society after the neuropsychiatric assessment. From the eight open-ended questions, three themes were identified: parental responsibility, resources and competence among actors in society, and inequality. The parents experienced that they had to take responsibility for meeting the needs of and securing support for their child. They found that the support given was unequal, uncoordinated, and with great variations between both geographical areas and professionals. Parents’ own resources were described as impacting the possibility to secure adequate interventions, resulting in unequal treatment of families depending on socioeconomic status. Several parents also expressed experiencing a lack of individualization of services and interventions. All children had received some kind of action from society, but not to the degree they had wished for when the children got their ASD diagnosis.Conclusion and implicationsThe essence of parents’ comments was the experience of authorities and societal actors trying to push the responsibility onto someone else. The study indicates a need for continuous longitudinal support for children identified with neurodevelopmental problems before the age of 3 years. This requires collaboration and coordination between different societal bodies.

Parental Quality of Life and Involvement in Intervention for Children or Adolescents with Autism Spectrum Disorders: A Systematic Review

“…Four studies used indirect strategies (e.g., parent training and support groups) to involve parents in the interventions [ 39 , 44 , 53 , 54 ]. In these cases, the main part of the intervention is centred on the child or the adolescent with ASD and is conducted in a clinical setting.…”

Needs of Grandparents of Preschool-Aged Children with ASD in Sweden

“…All families regardless of their socio-economic or cultural background can apply for participation in an EIBI program; however, preschools' refusal to participate in the program as well as long-waiting lists for up to 8-12 months were mentioned as main barriers hindering children and their families from obtaining timely support (Wenneborg, Personal Communication, 21 January 2019). Regardless of the type of the service provider other barriers to provision of quality services and evidence-based treatments have been identified: low levels of ASD knowledge among preschool teachers working in mainstream classroom settings (Zakirova Engstrand and Roll-Pettersson 2014); lack of knowledge and allegiance towards EIBI , and lack of collaboration between various agencies responsible for provision of services for children with ASD and their families in general (SNBHW 2018;Westman Andersson et al 2017).…”

An Integrated Care Strategy for Pre-schoolers with Suspected Developmental Disorders: The Optimus Co-design Project that has Made it to Regular Care

“…Additionally, the case conference allowed for information to be shared as well as provided an opportunity to foster knowledge and understanding of children with neurodevelopmental disorders among the professionals. Furthermore, parents report that access to services vary greatly depending on geographical areas and professionals, as well as on parents' own resources [10], and they are asking for an equitable distribution of support to meet the needs of the family [13]. Additionally, previously, individual health care providers felt obliged to take on a care coordinator role, which was time consuming and had the potential to lead to unequal care, delayed access to other care providers and potentially increase wait time for other families.…”

“…Service fragmentation and a silo approach is frequently reported to cause difficulties or delays in accessing services [9], and hence, to improve health and systems outcomes as well as to provide high quality care, care coordination is vital [9]. Besides being inefficient and insecure, the current organisation of care is also demanding for the families who have to juggle multiple roles to coordinate and fight for the adequate care of their child [10,11]. Not surprisingly, parents caring for children with developmental difficulties often describe a burdensome life situation with high levels of stress that affect the family's well-being [1,10,12], and they are asking for integrated approaches that includes them in the care for their child [13].…”