Anxiety, concerns and COVID-19: Cross-country perspectives from families and individuals with neurodevelopmental conditions.

Background: The COVID-19 pandemic had a major impact on the mental health and well-being of children with neurodevelopmental conditions (NDCs) and of their families worldwide. However, there is insufficient evidence to understand how different factors (e.g., individual, family, country, children) have impacted on anxiety levels of families and their children with NDCs developed over time. Methods: We used data from a global survey assessing the experience of 8043 families and their children with NDCs (mean of age (m) = 13.18 years, 37% female) and their typically developing siblings (m = 12.9 years, 45% female) in combination with data from the European Centre for Disease Prevention and Control, the University of Oxford, and the Central Intelligence Agency (CIA) World Factbook, to create a multilevel data set. Using stepwise multilevel modelling, we generated child-, family- and country-related factors that may have contributed to the anxiety levels of children with NDCs, their siblings if they had any, and their parents. All data were reported by parents. Results: Our results suggest that parental anxiety was best explained by family-related factors such as concerns about COVID-19 and illness. Children's anxiety was best explained by child-related factors such as children's concerns about loss of routine, family conflict, and safety in general, as well as concerns about COVID-19. In addition, anxiety levels were linked to the presence of pre-existing anxiety conditions for both children with NDCs and their parents. Conclusions: The present study shows that across the globe there was a raise in anxiety levels for both parents and their children with NDCs because of COVID-19 and that country-level factors had little or no impact on explaining differences in this increase, once family and child factors were considered. Our findings also highlight that certain groups of children with NDCs were at higher risk for anxiety than others and had specific concerns. Together, these results show that anxiety of families and their children with NDCs during the COVID-19 pandemic were predicted by very specific concerns and worries which inform the development of future toolkits and policy. Future studies should investigate how country factors can play a protective role during future crises.

Mental health impact of COVID-19 on Saudi families and children with special educational needs and disabilities in Saudi Arabia: A national perspective.

Introduction: The COVID-19 pandemic revealed a multidimensional impact on mental health due to health concerns, social distancing and lockdowns, job loss, and limits in institutional support. Accordingly, COVID-19 may disproportionally impact families with special educational needs and disabilities (SEND) due to the already high prevalence of mental health conditions in children with SEND and their parents. Hence, it is essential to determine the short-term impact of the pandemic on the mental health of families with SEND to identify their ongoing health, including psychological wellbeing and support needs. The current study examines the anxiety level and concerns of children with SEND and their parents living in Saudi Arabia. Methodology: A cross-sectional national study design was utilized as a part of an international consortium using an online Arabic survey. Data were collected from the Ministry of Human Resources and Social Development beneficiaries from May to July 2020. The sample consisted of 1,848 parents of children with SEND aged between 1 and 18 years (mean = 9.66; SD = 4.31). A descriptive and bivariant analysis is reported. Results: Parental worries on all those concerns when the pandemic started were significantly higher than before the pandemic, p < 0.050. Parental-perceived general anxiety had risen significantly across time, p < 0.001, and their perceived anxiety when the pandemic started exceeded their anxiety before the pandemic, p < 0.001. The general anxiety of children with SEND had risen significantly across time (from before the pandemic to when it had started to during the pandemic), p < 0.001. The children's general worries at the start of the pandemic had correlated significantly and positively with their anxiety, adaptive, maladaptive, and coping efficacies, and parental anxiety scores, p < 0.010 each. Conclusion: Anxiety levels were high in SEND and their caregivers before and during COVID-19. At the start of the pandemic, the anxiety, adaptive, maladaptive, coping efficacies, and parental anxiety scores of children with SEND were significantly and favorably correlated. These findings support the notion of SEND-specific anxiety and patterns of coping in SEND and their caregivers. The notion also attests to the institutional support required for this specifically vulnerable population during epidemics.

Saudi Expert Consensus-Based Autism Spectrum Disorder Statement: From Screening to Management.

BACKGROUND: There is a large gap between the needs of individuals diagnosed with autism spectrum disorder (ASD) and the currently available services in Saudi Arabia. Services are often difficult to access, inconsistent in quality, incomplete, unsatisfactory, and costly. As such, there is a national need for expert consensus on the appropriate standards for the assessment and management of children on the autism spectrum. METHODOLOGY: A guideline development group (GDC) was formed by professionals representing all related specialties and institutions involved in the management of individuals on the autism spectrum in Saudi Arabia. They met on a regular basis over 21 months. The guideline development process consisted of five steps starting from reviewing existing guidelines and ending with discussing and writing this manuscript. A formal voting process was utilized and recommendations were discussed until a consensus was reached. RESULTS: There was consensus on the following: A specialized diagnostic assessment needs to be carried out by an experienced multidisciplinary team for children referred to assess for ASD. They should be assessed for medical etiology, their behavioral history carefully reviewed, and symptoms directly observed. Longitudinal assessments are encouraged to reflect the effects of symptoms on the individual's ability to function while with their family, among peers, and in school settings. An additional formal assessment of language, cognitive, and adaptive abilities as well as sensory status is essential to complete the diagnostic process. Interventions should be individualized, developmentally appropriate, and intensive, with performance data relevant to intervention goals to evaluate and adjust interventions. Target symptoms must be identified to address and develop monitoring systems to track change. CONCLUSION: ASD is a complex condition with widely varying clinical manifestations, thus requiring evaluation and intervention by a range of professionals working in coordination. Behavioral and environmental interventions are the key to optimal outcomes, in conjunction with medications when indicated for specific symptoms. Parental involvement in interventions is vital to sustaining therapeutic gains.

Psychotropic Medications Use among Children with Autism in Saudi Arabia.

Psychotropic medication use is rising among children with autism spectrum disorders (ASD) in Saudi Arabia. Two hundred ninety-three parents of children diagnosed with ASD completed a parental concerns questionnaire (PCQ) online to examine children's family socio-demographics, health conditions and comorbidities, and past and current exposure to psychotropic medication as prescribed by their primary doctor. Findings revealed that more than one-third of the parents (39.08%) reported that their children were using medications at the time of the survey; risperidone (53%), methylphenidate (30%), and valproic acid (9%) were the most commonly used. A smaller number of parents stated that their children had previously used medications (16.09%). The most often prescribed drugs among this group were risperidone (45%), followed by methylphenidate (32%) and valproic acid (17%). The variables that showed a statistically significant association with the current use of psychotropic drugs were the child's age (OR = 1.25, 95% CI: 1.12, 1.40, p < 0.001), presence of comorbidities (OR = 7.75, 95% CI: 3.48, 17.24, p < 0.001), communication difficulties (OR = 1.79, 95% CI: 1.09, 2.95, p < 0.021), and anxiety symptoms (OR = 1.70, 95% CI: 1.00, 2.87, p < 0.049). Similarly, the child's age (OR = 1.23, 95% CI: 1.08, 1.40, p < 0.002) and presence of comorbidities (OR = 2.83, 95% CI: 1.16, 6.29, p < 0.022) showed statistically significant associations with previous use.

AGREEing on Clinical Practice Guidelines for Autism Spectrum Disorders in Children: A Systematic Review and Quality Assessment.

BACKGROUND: Autism spectrum disorder (ASD) is a multifaceted neurodevelopmental disorder requiring multimodal intervention and an army of multidisciplinary teams for a proper rehabilitation plan. Accordingly, multiple practice guidelines have been published for different disciplines. However, systematic evidence to detect and intervene must be updated regularly. Our main objective is to compare and summarize the recommendations made in the clinical practice guidelines (CPGs) for ASD in children released from November 2015 to March 2022. METHODS: CPGs were subjected to a systematic review. We developed the inclusion and exclusion criteria and health-related questions, then searched and screened for CPGs utilizing bibliographic and CPG databases. Each of the CPGs used in the study were critically evaluated using the Appraisal of Guidelines for REsearch and Evaluation II (AGREE II) instrument. In a realistic comparison table, we summarized the recommendations. RESULTS: Four eligible CPGs were appraised: Australian Autism CRC (ACRC); Ministry of Health New Zealand (NZ); National Institute for Health and Care Excellence (NICE); and Scottish Intercollegiate Guidelines Network, Healthcare Improvement Scotland (SIGN-HIS). The overall assessments of all four CPGs scored greater than 80%; these findings were consistent with the high scores in the six domains of AGREE II, including: (1) scope and purpose, (2) stakeholder involvement, (3) rigor of development, (4) clarity of presentation, (5) applicability, and (6) editorial independence domains. Domain (3) scored 84%, 93%, 86%, and 85%; domain (5) 92%, 89%, 54%, and 85%; and domain (6) 92%, 96%, 88%, and 92% for ACRC, NICE, NZ, and SIGN-HIS, respectively. Overall, there were no serious conflicts between the clinical recommendations of the four CPGs, but some were more comprehensive and elaborative than others. CONCLUSIONS: All four assessed evidence-based CPGs demonstrated high methodological quality and relevance for use in practice.

Factors associated with age of diagnosis of autism spectrum disorder among children in Saudi Arabia: new insights from a cross-sectional study.

OBJECTIVES: Research examining the age of diagnosis of autism spectrum disorder (ASD) and its influencing factors mostly originate from developed Western countries, providing little to no systematic information about the understanding and management of ASD in the rest of the world. The present exploratory study examined the influence of child and family characteristics on the age of ASD diagnosis in Saudi Arabia. RESULTS: The median age at diagnosis was 3.0 years and was associated with some child and family characteristics. A 1 year increase in child's age was associated with a 0.1 year increase in age of diagnosis (95% CI 0.05, 0.12). Children who did not respond to their name were diagnosed 0.3 years earlier than other children (95% CI - 0.60, - 0.05), and engaging in challenging behavior was associated with a 0.5 year increase in age of diagnosis (95% CI 0.20, 0.81). A lack of comorbidity was associated with a 0.6 year increase in the age of diagnosis compared to the diagnosis age of children with comorbidity (95% CI 0.13, 1.01). Finally, those residing outside of Saudi Arabia were diagnosed with ASD 0.9 years earlier than those residing in Saudi Arabia (95% CI - 0.171, - 0.11).

Assessment of knowledge about childhood autism spectrum disorder among healthcare workers in Makkah- Saudi Arabia.

OBJECTIVE: To measure the knowledge of healthcare professionals about increasingly prevalent Autism Spectrum Disorder (ASD) along with perceptions around its management and prognosis and comparison across various specialties. METHODS: This Cross sectional survey based comparative analysis took place at Maternity and Children Hospital and King Faisal Hospital Makkah from December 2017 to May 2018. The validated self-administered "Knowledge about childhood autism among health workers" questionnaire was used along with additional questions regarding perceptions about ASD. The mean and mean percent scores were calculated. Chi squared test and ANOVA were applied to find the association between quantitative and qualitative variables respectively. RESULTS: Out of 162 participants, 153 returned the questionnaire and 147 were included in final analysis. Physicians constituted 81.6% (120) of participants. The mean score for participants was 9.80(S.E.M ±0.32) where non-physicians yielded higher mean score (11.2±4.41) as compared to physicians (9.6±3.28) (p=0.113). Psychiatrists had highest score of 16/19 while general physicians had lowest (6/19). Participants with more years of experience had higher mean scores (p-value = 0.01). About 72.10% (106) of participants opted for medication as a treatment option. Nearly 38.1% (56) of participants were skeptical about improvement of ASD with early interventions. CONCLUSION: There is a lack of knowledge about ASD amongst healthcare professionals in Saudi Arabia. Experienced professionals working with ASD children can be utilized to deliver targeted trainings nationwide.

Application of a Pyramidal Training Model on the Implementation of Trial-Based Functional Analysis: a Partial Replication.

We employed a pyramidal training model (PTM) to teach staff to correctly implement and collect data for trial-based functional analysis (TBFA) in simulated situations. First, we trained four behavioral consultants (BCs) in a group format, who each trained one behavior technician (BT) in an individual format. We utilized a non-concurrent multiple baseline design to evaluate the effect of the training. During generalization probes, participants implemented TBFA with a novel problem behavior. This study will contribute to the literature on teaching staff how to conduct TBFA. This study demonstrates the application of a two-level PTM. This study illustrates how agencies can utilize the Task Analysis Training Protocol within a PTM to train staff on implementation of TBFA.

Services for children with autism in the Kingdom of Saudi Arabia.

Little information is available about autism spectrum disorder services in the Kingdom of Saudi Arabia. A sample of 205 parents completed an online survey about the use of autism spectrum disorder services for their children. The results revealed that on average, children began services by 3.3 years. Most parents reported utilizing non-medical treatments followed by biomedical treatments and cultural and religious treatment. The age at the initiation of services and the type of treatments used differed by parent's income, educational attainment, the extent of knowledge about autism spectrum disorders, and geographic location. Some child characteristics also influenced the use of services. The disparities in service utilization in Saudi Arabia point to the need to develop policy and interventions that can mitigate the paucity of services for children with autism spectrum disorders. More research is needed to better understand service use and the decision-making processes that underlie treatment selection by parents of children with autism spectrum disorders in the Kingdom of Saudi Arabia.

Characteristics of Arabic Websites with information on autism.

OBJECTIVE: To explore the characteristics of Arabic websites with information on autism spectrum disorder (ASD). METHODS: The word autism in Arabic was entered into 2 popular search engines in September 2013 to locate the top 80 websites featuring the term. Websites were sorted using 10 characteristics, previously used to evaluate the characteristics of English websites with information on ASD. RESULTS: Most websites were registered using a .com top-level domain (69%), were an individual`s site, forum, or blog (44%), and were updated after September 2012 (60%); they contained images or texts that seemed to persuade viewers to purchase products (43%); they provided information with the name of author(s) (64%); they described the basic characteristics of ASD; and they promoted various types of treatments, most of which lack empirical support (63%). However, few websites contained information with references to peer review resources (3%) or a warning statement that such information should not replace the opinion of a qualified professional (8%). CONCLUSION: Internet users may not find Arabic websites to be reliable sources to obtain information on ASD. Given the increased use of the internet, creation of websites that contain trusted information on ASD could potentially aid parents in accessing available services, help them learn about empirically validated interventions, and enable them to advocate for their children`s rights.