Advances in Autism – 10-1
1. Kulari G, Sarantakos Cordeiro GF. Autism diagnosis experience and parental stress among Portuguese parents. Advances in Autism;2024;10(1):1-11.
Purpose This study aims to examine the impact that diagnostic factors such as duration of diagnostic period, number of professionals consulted and perceived social support have on parental stress during the diagnostic process of autism spectrum disorder (ASD). Design/methodology/approach Forty parents of 2–18 year-old children/adolescents with a formal ASD diagnosis recruited from five specialized private clinics in Lisbon completed a survey which included diagnostic questionnaire, parental stress scale and social support scale from April to December 2022. Findings Data analysis indicated that the mean age of the diagnosis was 5.6 years with a delay of 3.95 years from first concern until final diagnosis. On average, parents consulted a mean of 3.62 professionals. Other findings indicated that as age of parents increased, levels of parental stress decreased. Parents with higher levels of social support had lower levels of parental stress. Furthermore, higher age of child at first concern predicted higher affective social support. Originality/value This study reflects on the experience of obtaining the ASD diagnosis in Portugal, raising awareness on the importance of providing early detection and social support for distressed parents.
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2. Burden DG. “You’ve actually got two patients, you haven’t got one”: parent-informed criteria for evaluating the autism assessment process. Advances in Autism;2024;10(1):12-24.
Purpose Parents whose children have undergone an autism assessment often describe the process as extremely stressful. This affects how parents engage with services post-diagnosis, meaning less likelihood of using subsequent service support despite struggling to cope. Since parents already report many barriers to accessing services, e.g. long waiting lists, lack of co-ordination and limited resources (Sapiets et al. 2023), negative experiences during assessment should not pose another potential barrier to engagement. This study aimed to address how families’ needs can be better met during the assessment process. Design/methodology/approach In this qualitative study, the author conducted semi-structured interviews with 11 parents whose child had undergone an autism assessment in the last five years. Thematic analysis determined key themes. Findings The six themes were: clarity and communication, access to support and resources, aftercare, recognition of parent concerns, personalisation of the assessment process and concerns around the use of personal protective equipment/online assessments. These themes led to criteria to assess the quality of autism assessment services in line with parent perspectives. Practical implications These parent-informed criteria could facilitate the consideration of parents’ views into service evaluations of autism assessment services across the UK. Originality/value Previous research indicates that the autism assessment experience is often extremely stressful and overwhelming for families (Crane et al., 2016). Despite this, guidance to improve autism services rarely prioritises the opinions and experiences of service-users and their families. The criteria presented here were derived from themes identified by interviewing parents on their experiences of the autism assessment process, thus shifting the focus onto service-users.
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3. AlQahtani O, Efstratopoulou M. Investigating the early signs of ASD in preschool children in the UAE as a model for GCC countries. Advances in Autism;2024;10(1):25-37.
Purpose Identifying autism spectrum disorder (ASD) in children’s early years significantly impacts their academic performance and future life. It allows them to receive special support services and the required early intervention. Preschool teachers spend considerable time with their students, which allows them to observe their behaviors in different settings like classrooms and playgrounds. However, teachers need to be knowledgeable of ASD early assessment to detect them. Whereas, all well-known ASD assessment tools are designed for populations from different cultures than the Gulf Cooperation Councils’ (GCC) culture. This study emphasizes the importance of preschool age, from 3 to 5, in indicating children’s early signs of ASD. This paper aims to indicate the early signs of ASD in preschool children in the UAE as a model for other GCC countries. Design/methodology/approach A qualitative method consisting of interviews with preschool teachers and the ASD children’s parents was conducted to investigate the ASD early symptoms in children. Findings The findings of the study show that there is a direct connection between the opinions expressed by preschool teachers and the parents of children with ASD (Autism Spectrum Disorder). These results also highlight the presence of early indications of ASD among preschool-aged children in the United Arab Emirates, such as difficulties in communication, repetitive actions, delayed speech, excessive focus on tablets, trouble paying attention, hyperactivity, sleep problems, and aggressive behavior. Originality/value The outcomes suggest a strong connection between the feedback from preschool teachers and the parents of children with ASD. The study uncovers initial indications of ASD in preschool-aged children from the United Arab Emirates, such as difficulties in communication, repetitive actions, delayed speech, excessive fascination with tablets, problems with attention, hyperactivity, sleep disturbances, and aggressive behavior.
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4. Ramey AS, Rainey VR, Seals SR. Home organization and adaptive behavior in children with autism spectrum disorder. Advances in Autism;2024;10(1):38-49.
Purpose A chaotic home environment, marked by disorganization, noise and a lack of routine, has negative associations with language development, social competence and executive functioning. This study aims to investigate the mediating effect of chaotic homes on adaptive behaviors, or behaviors that allow independent functioning, in children diagnosed with autism spectrum disorder (ASD) compared to neurotypical (NT) children. Children with ASD have difficulties with adaptive functioning in their environment, and identifying factors in the home that may exacerbate these behaviors will help in understanding the larger family dynamics that may affect behavior. Design/methodology/approach In total, 251 primary caregivers completed questionnaires about their children’s adaptive behavior and the structure of the home environment. Findings The results of a mediation analysis found a significant indirect effect of ASD status leading to lower adaptive behaviors through home chaos. This suggests those with ASD experienced more household chaos than NT children, which influenced their lower adaptive behavior scores. Originality/value This research provides insights into the complex relationship between the home environment and child behavior in children with ASD.
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5. Li DCY. Book review of Kids Across the Spectrums: Growing Up Autistic in the Digital Age. Advances in Autism;2024;10(1):50-51.
