Pervasive developmental disorders are now commonly referred to as autism spectrum disorders (ASDs). ASDs present with a range of severity and impairments, and often are a cause of severe disability, representing a major public health concern. The diagnostic criteria require delays or abnormal functioning in social interaction, language, and/or imaginative play within the first 3 years of life, resulting in a deviation from the developmental pattern expected for the age. Because establishing a diagnosis of ASD is possible as early as 18-24 months of age, clinicians should strive to identify and begin intervention in children with ASD as soon as signs are manifest. Increasing efforts are underway to make ASD screening universal in pediatric healthcare. Given the crucial importance of early identification and multiple modalities of treatment for ASD, this review will summarize the diagnostic criteria, key areas for assessment by clinicians, specific scales and instruments for assessment, and discussion of evidence-based treatment programs and the role of specific drug therapies for symptom management.
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.
Objective: Parents of children with autism spectrum disorders (ASD) seem to perceive that their child's development is not following the normal pattern as early as the first year of life. However, ASD children may not receive a diagnosis until they are of preschool age, especially in low-and middleincome countries. The objective of this study was to evaluate the pathway between initial parental concerns about atypical child development and ASD diagnosis in Brazil. Methods: Nineteen mothers whose children had been diagnosed with ASD participated and were interviewed. The ASD group consisted of two girls and 17 boys, with a mean age of 93.0 months (SD 48.4 months; range 39-197 months). Results: Mothers had their first concerns regarding ASD when children were 23.6611.6 months old, but formal diagnosis occurred at a mean 6 SD age of 59.6640.5 months, corresponding to a 3-year delay. Most mothers felt discouraged to address their concerns due to negative experiences with health professionals. Conclusion: In Brazil, mothers perceived the first signs of ASD in their children at an age similar to that reported in other countries, but the diagnosis of ASD seemed to be delayed. Consistent with the literature, mothers reported negative experiences with health professionals during the pathway to achieving ASD diagnosis.
BackgroundPoor eye contact and joint attention are early signs of autism spectrum disorder (ASD) and important prerequisites for developing other socio‐communicative skills. Teaching parents evidence‐based techniques to improve these skills can impact the overall functioning of children with ASD. We aimed to analyse the impact of conducting a group parent‐training intervention with video modelling to improve the intelligent quotient (IQ), social and communication functioning and to minimise symptoms in children with ASD and intellectual disability (ID).MethodsStudy design: A multicentre, single‐blinded, randomised clinical pilot trial of parent training using video modelling was conducted.Sample: Sixty‐seven parents of children with ASD, aged between 3 and 6 years and with IQs between 50 and 70, were randomised: 34 to the intervention group and 33 to the control group.Intervention program: The intervention group received parent training over 22 sessions, and the control group received the standard community treatment.Instruments: Pre‐evaluation and post‐evaluation (week 28), the following were used: Autism Diagnostic Interview, Vineland Adaptive Behaviour Scale I, Snijders‐Oomen Nonverbal Intelligence Test, Autism Behaviour Checklist and Hamilton Depression Rating Scale.Data Analysis: Intention to treat and complier‐average causal effect (CACE) were used to estimate the effects of the intervention.ResultsThere was a statistically significant improvement in the Vineland standardized communication scores in CACE (Cohen'sd = 0.260). There was a non‐statistically significant decrease in autism symptomatology (Autism Behaviour Checklist total scores) and a significant increase in the non‐verbal IQ in the intervention group. After the false discovery rate correction was applied, IQ remained statistically significant under both paradigms. The effect size for this adjusted outcome under the intention‐to‐treat paradigm was close to 0.4, and when considering adherence (CACE), the effect sizes were more robust (IQ's Cohen'sd = 0.433).ConclusionsParent training delivered by video modelling can be a useful technique for improving the care given to children with ASD and ID, particularly in countries that lack specialists.
Objective: To evaluate the impact of a training program on autism spectrum disorder (ASD) identification offered to Brazilian health professionals. Methods: Twenty-two primary care providers participated in five 3-hour weekly training sessions. Results: The trained providers significantly improved their ASD knowledge after training in comparison with pre-training (mean score, 6.73 vs. 9.18, p , 0.01). Clinical practice also changed: 4 months after the training program, the providers had referred six times as many suspected cases of ASD to a specialized mental health service in comparison with the previous 4 months. Conclusion: This pilot training model seems a promising, feasible, and inexpensive way to improve early identification of ASD in the primary care system.
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