Parents of Children Diagnosed with Autism Spectrum Disorder: What Do They Expect and Experience from Preschools?

BACKGROUND: In Sweden, children diagnosed with autism spectrum disorders (ASD) as well as other children in need of special support, according to the law should be provided stimulation and support for their development in their preschools. Parents of children diagnosed with ASD have been shown to struggle to ensure the right to support for their child from society, including in preschool. This study reports parent expectations and experiences when having a child diagnosed with ASD in preschool. METHODS: A questionnaire with 12 open-ended and 9 multiple-choice questions was completed by parents of 26 children (3 girls, 23 boys, mean age 4:3 years). The children had been diagnosed with ASD within the last year. The data were analyzed using a qualitative inductive approach with a content analysis of the open-ended questions. FINDINGS AND CONCLUSIONS: This study shows that parents expect competence and knowledge about ASD among preschool staff, including the principal. They need continuous dialogue between parents and the preschool staff and expect individualized support for their child. Concerns about their child in preschool frequently occurred.

[Organisation of health care for families with young children with autism in a multiethnic community in Gothenburg, Sweden]. / Lokal samverkan positiv vid autism hos små barn i multietnisk stadsdel.

Organisation of health care for families with young children with autism in a multiethnic community in Gothenburg, Sweden In a project in a multiethnic district in Gothenburg a local collaborative model with a multiprofessional team for families with young children with autism has been running for three years. The model allows assessments and intervention planning close to the family's local environment. The project has revealed that the time from identification of problems to assessment and intervention has been considerably shortened compared to the situation before the local collaborative model was started.

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.

Perception of social cues of danger in autism spectrum disorders.

Intuitive grasping of the meaning of subtle social cues is particularly affected in autism spectrum disorders (ASD). Despite their relevance in social communication, the effect of averted gaze in fearful faces in conveying a signal of environmental threat has not been investigated using real face stimuli in adults with ASD. Here, using functional MRI, we show that briefly presented fearful faces with averted gaze, previously shown to be a strong communicative signal of environmental danger, produce different patterns of brain activation than fearful faces with direct gaze in a group of 26 normally intelligent adults with ASD compared with 26 matched controls. While implicit cue of threat produces brain activation in attention, emotion processing and mental state attribution networks in controls, this effect is absent in individuals with ASD. Instead, individuals with ASD show activation in the subcortical face-processing system in response to direct eye contact. An effect of differences in looking behavior was excluded in a separate eye tracking experiment. Our data suggest that individuals with ASD are more sensitive to direct eye contact than to social signals of danger conveyed by averted fearful gaze.