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

BACKGROUND: Early 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. AIM: To obtain increased knowledge of parents’ experiences of support and interventions 6 years after their child was assessed for ASD. METHODS AND PROCEDURES: A 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 RESULTS: Parents 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 IMPLICATIONS: The 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.