Barriers to and Facilitators of Successful Early School Transitions for Children with Autism Spectrum Disorders and Other Developmental Disabilities: A Systematic Review

Fontil, Laura; Gittens, Jalisa; Beaudoin, Emily; Sladeczek, Ingrid E.

doi:10.1007/s10803-019-03938-w

Cited by 33 publications

(31 citation statements)

References 68 publications

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“…Parents from high-income countries also complain that schools are not able to handle ASD special needs (Bitterman et al, 2008), and that the number of hours spent at school is insufficient (McIntyre & Zemantic, 2017). Caregiver frustration is in agreement with teacher reports of lack of support, training, and knowledge about ASD, even in early school years (Fontil et al, 2020). Thus, policymakers from Latin America and other regions must be aware of these challenges and priorities when developing programs for people with autism.…”

Section: Discussionsupporting

confidence: 77%

Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries

Paula

Cukier²,

Cunha

et al. 2020

Autism

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Lack of access to services and support is an important issue for people with autism, but in low- and middle-income countries there is a lack of data on this problem. The aims of this study were to describe the challenges and priorities, identify barriers to care, and map stigma among families of individuals with autism in Latin America. This survey was undertaken by the Red Espectro Autista Latinoamerica network, a coalition of researchers/clinicians from six Latin American countries; it comprised 2942 caregivers of children with autism from Brazil, Argentina, Chile, Uruguay, Venezuela, and the Dominican-Republic, who completed the Spanish/Portuguese version of the Caregiver Needs Survey. The survey showed that the main priorities were greater community awareness and improvements in education. The main barriers to care were waiting lists (50.2%), treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one-third reported feeling discriminated against and helpless for having a child with autism, 48.8% reported some type of financial problem, 47.4% had to reduce work hours, and 35.5% had to stop working because of their child’s autism. This survey describes the main needs/challenges faced by individuals with autism in Latin America, helping to build data-driven strategies at a national/regional level. Lay abstract Approximately 6 million individuals with autism spectrum disorder live in Latin America. In order to strengthen autism spectrum disorder research collaborations and awareness in the region, the Latin American Autism Spectrum Network ( Red Espectro Autista Latinoamerica) was constituted in 2015, comprising researchers and clinicians from the following six countries: Brazil Argentina, Chile, Uruguay, Venezuela, and the Dominican Republic. This first multisite study from the Red Espectro Autista Latinoamerica network aims to describe the challenges and priorities to identify barriers to care and to map stigma among families of individuals with autism spectrum disorder living in Latin America. A total of 2942 caregivers from these six countries completed an online survey showing that the main priorities were greater community awareness and improvements in the educational system for individuals with autism spectrum disorder. In addition to that, the main barriers to care were related to lack of structure, mainly waiting lists (50.2%), high treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one third reported feeling discriminated against and helpless for having a child with autism spectrum disorder. Also, 48.8% of the caregivers declared financial problems, 47.4% of them had to cut down work hours, and 35.5% had to leave their jobs because of their child’s autism spectrum disorder. This is a pioneer study providing a description of the needs and challenges faced by families affected by autism spectrum disorder in Latin America, helping to build data-driven strategies at the national and regional levels.

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Section: Discussionsupporting

confidence: 77%

Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries

Paula

Cukier²,

Cunha

et al. 2020

Autism

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“…For preadolescents and adolescents, sexual and menstrual issues need to be entertained, along with proper inclusive education, vocational training and skill development [30].…”

Section: Special Consideration For Adolescentsmentioning

confidence: 99%

Current consensus on clinical features, pathogenesis, diagnosis and management of autism spectrum disorder in children: A brief review

Panda

2019

Int J Pediatr Res

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Autism spectrum disorder (ASD) usually presents in early developmental period, in children less than five years usually with poor social relations, verbal and nonverbal communications and stereotypic and repetitive behavior. The prevalence of ASD is increasing rapidly; especially in urban community of developed as well as developing nations. Combined interaction of genetic and environmental factors has been proposed as the possible neuropathogenetic mechanism underlying ASD. Children with ASD have specific abnormalities in functional connectivity of brain and altered fecal microbiota. Children with Fragile X syndrome, Rett syndrome and Tuberous sclerosis often have autistic features.Interviewing the caregiver and observation of the child is the only definitive way to confirm the diagnosis of ASD. Recently DSM V criteria have combined under a single umbrella all the autistic disorders including Asperger syndrome and pervasive developmental disorder-not otherwise satisfied. Apart from DSM V criteria, Autism Diagnostic Observation Schedule (ADOS) and Childhood Autism Rating Scale (CARS) are also useful in diagnosis and evaluation of children with ASD. Autistic children are more likely to have hyperactivity, inattention, sleep abnormalities and epilepsy, as compared to general population. Applied behavioral analysis, sensory integration therapy and structured teaching are used in the management of autism spectrum disorder, along with atypical antipsychotics like Risperidone and Aripiprazole. Various complementary and alternative treatments like music therapy, oral probiotics and gluten free, casein free diet are currently under evaluation in various clinical studies.

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“…Parents of children with ASDs have reported experiencing more stress than parents of children with other developmental disabilities (DDs; Griffith et al 2010), which could be attributed to distinct characteristics that are associated with ASDs (i.e., delayed diagnosis, more behavioral problems, lack of reciprocity; Griffith et al 2010). Furthermore, a common theme in the literature among parents of children with ASDs is a lack of collaboration between home and school during the transition planning (Fontil et al 2019b). Given that the TTS is often especially stressful for families with children with ASDs, mutual respect and meaningful partnerships need to be underscored and made a priority.…”

mentioning

confidence: 99%

“…Despite the social and academic implications of implementing high-quality transition supports, several barriers impede the implementation of collaborative transition practices. Commonly cited barriers to collaborative transition support practices for families with children with ASDs include lack of time, lack of resources, insufficient school staff training, and divergent beliefs concerning the transition planning process (Fontil et al 2019b). Furthermore, families of children with ASDs report being unsatisfied with receiving school support, lack of continuity of care between sending and receiving programs, and a lack of collaboration between home and the receiving school (Fontil et al 2019b).…”

mentioning

confidence: 99%

“…The extant literature on TTS has highlighted that there are more commonalities than differences when we compare transition experiences of children with ASDs to those of children with other DDs, with the exception that children with ASD have more difficulty with horizontal transitions (i.e., smaller transitions throughout the day; e.g., moving from classroom to playground). These smaller, daily transitions are more common in elementary schools in comparison to the preschool environment (Fontil et al 2019b). Additionally, elementary school staff report exhibiting an insufficient amount of ASD-specific knowledge, which may have an impact on their capacity to successfully integrate students (Fontil et al 2019b).…”

mentioning

confidence: 99%

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