Autism Resource Research Articles

Variance in Autism Prevalence: Links With State-Level Autism Resources

The prevalence of autism spectrum disorder (ASD) has varied over time and across the United States. This variability is likely related to external factors, such as regional differences in ASD-related resources. The study reported on here examined the links between ASD prevalence as measured by Individuals with Disabilities Education Act (IDEA) Part B child count data and four aspects of state infrastructure (health care and insurance policies, clinical resources, research infrastructure, and awareness-raising individuals/organizations). This study also investigated whether these constructs varied by geographical region. The data for this study were abstracted from publicly available databases. Information on state infrastructure was gathered from high-quality reports, resource guides, certificant registries, and databases. More comprehensive ASD-relevant insurance and health care policies, more clinical resources, and greater research infrastructure were associated with higher ASD state prevalence rates as measured by the IDEA Part B child count data. Prevalence of ASD was higher in eastern U.S. states compared with southern U.S. states, but state-level ASD resources did not statistically significantly differ across geographic regions. Implications for research, practice, and policy are discussed.

EXPLORING THE RELATIONSHIP OF MIND SKILLS AND SOCIAL SKILLS WITH AUTISTIC TRAITS AMONG DIAGNOSED CHILDREN WITH AUTISM SPECTRUM DISORDER (ASD)

Autism Spectrum Disorder (ASD) is considered as a neurodevelopmental clause that characterized by constant difficulties in social, mental, communicational, or repetitive behavior aspects of the child. The children who are diagnosed with this disorder usually report a very heterogeneous rang of symptoms with unstable range of severity. The core purpose of this study was not only highlighting the deficit skills of autistic children but also endeavor to check the possible relationship of these deficit skills with autistic traits of the children. For that purpose, a sample of (N=30) diagnosed children with autism was selected from two autism centre i.e., Autism Resource Centre & Special Need Care Centre in Multan by using the purposive sampling technique. To collect the responses of the autistic children three valid and reliable measures were utilized. The Mind Task Battery was used to check the mind skills of the children; Social Skills Scale (SSS) was applied to check the social competency and Social Responsive Scale (SRS) was administered to check the autistic traits. The collected data was analyzed by using SPSS. The results from the collected data revealed that the autistic traits were higher among the children and these traits were significantly correlated with the mind skills of the children. Furthermore, the results reported that the children exhibit frequent repetitive behavior, low level of advance and basic skills and lower level of self-control. Hence, from the results it concluded that there is a dire need to address problems of autistic children and provide some intervention to improve these anomalies. Keywords: Autism Spectrum Disorder (ASD), Social Skills, Mind Skills, Autistic Traits.

Quasi-experimental Controlled Study on the Effect of Autism Resource Clinic Guardian Attendance at a Military Treatment Facility.

Autism spectrum disorder (ASD) is a complex neurodevelopmental condition that requires multidisciplinary care. Evidence-based practice indicates that early intervention may improve long-term ASD outcomes. The Autism Resource Clinic (ARC) provides an educational session for guardians empowering them to build a personalized ASD team for their child. We examined the impact of guardian attendance of an ARC at a Military Treatment Facility on time to initiation of patient services and guardian stress level. A quasi-experimental controlled study was conducted comparing a group of guardians attending the ARC with a group of guardians not attending the ARC following a child's initial ASD diagnosis. ARC speakers included medical, county/state, community/military, and advocacy experts. Surveys were completed at diagnosis, 1, 2, and 3 mo postdiagnosis. Initiation of patient services and Parental Stress Scale scores were compared between groups using independent samples t-test, chi-square tests, or nonparametric tests, as appropriate. Use of Applied Behavioral Analysis was significantly higher among ARC attendees vs. nonattendees (73.3% vs. 33.3%, P = 0.028). County early intervention was more frequent among ARC attendees versus nonattendees (40% vs. 13.3%, P = 0.09). Of borderline significance, median time to initiation of genetics services was greater in ARC attendees vs. nonattendees (106 vs. 65.5, P = 0.10). The two groups did not differ on changes in Parental Stress Scale score from baseline to follow-up months 1, 2, or 3. Although ARC did not influence time to initiation of patient services or guardian stress level, attendance of ARC was associated with more frequent use of Applied Behavioral Analysis services and county early intervention services. This pilot study is unique as it targets guardians of ASD patients within military treatment facilities. Study limitations include data collection during the coronavirus disease 2019 pandemic, sequential evaluation of experimental and control groups, sample size and generalizability. A large, multicenter, randomized controlled trial is required to better assess the impact of this educational opportunity among military populations.

Racial and Ethnic Disparities in Geographic Access to Autism Resources Across the US

While research has identified racial and ethnic disparities in access to autism services, the size, extent, and specific locations of these access gaps have not yet been characterized on a national scale. Mapping comprehensive national listings of autism health care services together with the prevalence of autistic children of various races and ethnicities and evaluating geographic regions defined by localized commuting patterns may help to identify areas within the US where families who belong to minoritized racial and ethnic groups have disproportionally lower access to services. To evaluate differences in access to autism health care services among autistic children of various races and ethnicities within precisely defined geographic regions encompassing all serviceable areas within the US. This population-based cross-sectional study was conducted from October 5, 2021, to June 3, 2022, and involved 530 965 autistic children in kindergarten through grade 12. Core-based statistical areas (CBSAs; defined as areas containing a city and its surrounding commuter region), the Civil Rights Data Collection (CRDC) data set, and 51 071 autism resources (collected from October 1, 2015, to December 18, 2022) geographically distributed into 912 CBSAs were combined and analyzed to understand variation in access to autism health care services among autistic children of different races and ethnicities. Six racial and ethnic categories (American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino, Native Hawaiian or other Pacific Islander, and White) assigned by the US Department of Education were included in the analysis. A regularized least-squares regression analysis was used to measure differences in nationwide resource allocation between racial and ethnic groups. The number of autism resources allocated per autistic child was estimated based on the child's racial and ethnic group. To evaluate how the CBSA population size may have altered the results, the least-squares regression analysis was run on CBSAs divided into metropolitan (>50 000 inhabitants) and micropolitan (10 000-50 000 inhabitants) groups. A Mann-Whitney U test was used to compare the model estimated ratio of autism resources to autistic children among specific racial and ethnic groups comprising the proportions of autistic children in each CBSA. Among 530 965 autistic children aged 5 to 18 years, 83.9% were male and 16.1% were female; 0.7% of children were American Indian or Alaska Native, 5.9% were Asian, 14.3% were Black or African American, 22.9% were Hispanic or Latino, 0.2% were Native Hawaiian or other Pacific Islander, 51.7% were White, and 4.2% were of 2 or more races and/or ethnicities. At a national scale, American Indian or Alaska Native autistic children (β = 0; 95% CI, 0-0; P = .01) and Hispanic autistic children (β = 0.02; 95% CI, 0-0.06; P = .02) had significant disparities in access to autism resources in comparison with White autistic children. When evaluating the proportion of autistic children in each racial and ethnic group, areas in which Black autistic children (>50% of the population: β = 0.05; <50% of the population: β = 0.07; P = .002) or Hispanic autistic children (>50% of the population: β = 0.04; <50% of the population: β = 0.07; P < .001) comprised greater than 50% of the total population of autistic children had significantly fewer resources than areas in which Black or Hispanic autistic children comprised less than 50% of the total population. Comparing metropolitan vs micropolitan CBSAs revealed that in micropolitan CBSAs, Black autistic children (β = 0; 95% CI, 0-0; P < .001) and Hispanic autistic children (β = 0; 95% CI, 0-0.02; P < .001) had the greatest disparities in access to autism resources compared with White autistic children. In metropolitan CBSAs, American Indian or Alaska Native autistic children (β = 0; 95% CI, 0-0; P = .005) and Hispanic autistic children (β = 0.01; 95% CI, 0-0.06; P = .02) had the greatest disparities compared with White autistic children. In this study, autistic children from several minoritized racial and ethnic groups, including Black and Hispanic autistic children, had access to significantly fewer autism resources than White autistic children in the US. This study pinpointed the specific geographic regions with the greatest disparities, where increases in the number and types of treatment options are warranted. These findings suggest that a prioritized response strategy to address these racial and ethnic disparities is needed.

Parental Stress of Pakistani Families with Children who Have Developmental Disabilities

Background: The goal of this research was to find out what factors were associated with these parenting effects in Pakistani mothers and dads who had children with intellectual disability (ID) or autism spectrum disorders (ASD) A total of 191 parents agreed to take part in the study, 100 of whom had a child with ADS and 91 of whom had a child with ID. Each participant filled out standardized parenting stress scale rating scales and provided demographic data during the interview. Families who have children with Autism and ID have higher emotional state, according to structural equation modelling. Objective: To find out parental stress of Pakistani families with children who have developmental disabilities. Methodology: The cross-sectional study was conducted through five different organizations in Lahore, Pakistan (Bases, Rising sun, Dimensions, Autism resource center, Oasis) and from two hospitals (Mayo Hospital Lahore and Sheikh Zaid Hospital). Standardized questionnaire (Parental stress scale) was used. Data was collected through standardized questionnaire after taking inform consent and distributed among the parents with children that have special needs (ASD and ID) Parents were asked to complete a questionnaire. Result scores were recorded for every respondent. The data was analyzed by “Statistical Package for Social Sciences” SPSS (version 22.0). Results: Using a standardized questionnaire, it was shown that the emotional well-being of families with children with ASD and ID was much worse, with both mothers and fathers reporting emotional exhaustion. Stress was exacerbated by a lack of emotional well-being. ASD parents show high percentage of 72.2% and ID parents show highest percentage of 61.1% so according to the given standardized questionnaire points the higher the percentage the higher the stress level. While raising a kid with neurological disabilities has a roughly comparable effect on Pakistani families as it does on parents in other countries, there are evidence that children with ASD and ID provide particular challenges to these families. Conclusion: Parents of both children face higher stress level. High level of parent stress needs timely counselling of the parents about the circumstances that they need to be encountered with having an abnormal child. They shall be aware with the techniques to deviate their mind from the most recurring point of stress. Keywords: Autism spectrum disorder, Intellectual disability, Parental stress, Pakistan, Health, developmental disability

Parental Perspective Regarding Consanguineous Marriages as the Cause for Speech and Language Disorders in Pakistan

Background: Consanguineous connections are portrayed as connections between close relatives. These relationships are generally preferred in the majority of Asian and African nations particularly in the Muslim nations. Nonetheless, it is clear that these sorts of marriages have higher risk of congenital anomalies and disorders in children. Objective: To determine the parental perspective regarding consanguineous marriages as the cause for speech and language disorders in children. Methodology: The cross-sectional study was conducted through different hospital and centers in Lahore, Pakistan (Mayo Hospital, Services hospital, Autism Resource center and The University of Lahore Teaching hospital). Questionnaire will be used and compromised of questions. Data was collected through standardized questionnaire after taking the consent and was distributed among the consanguineous parents who have children with speech and language disorders. Parents were asked to complete the questionnaire. The data was collected using the online questionnaire as well. Results score was recorded for every respondent. Results: The study showed that majority of the people thought that consanguinity cannot lead to speech and language disorders in children. Conclusion: According to my research, although there is higher frequency of speech and language disorders recorded among consanguineous marriages than non-consanguineous marriages but majority of the people had a trend and preference for cousin marriages. Keywords: Consanguinity, Cousin Marriage, parental attitude, speech problems, language disorders, perception, Pakistan

A virtuous circle: Stakeholder perspectives of a short-term intensive parent training programme delivered within the context of routine services for autism in China.

Although the evidence of parent training programmes for families of autistic children has continued to grow, little is known about the experiences and perceptions of key stakeholders, especially in low- and middle-income countries. This qualitative study was part of a larger real-world evaluation of a short-term intensive parent training programme in routine services delivered to caregivers of autistic children aged 3–6 years in China. It aimed to provide insights into programme acceptability, reasons for participant involvement, and factors related to programme implementation. Fourteen caregivers participated in the in-depth interviews, and two focus group discussions were conducted with eight practitioners. Data were analysed using a combination of data- and theory-driven approaches. Findings point to the needs in low autism resource settings for substantial practice and feedback; group support; individualised coaching; more autism-related knowledge, resources and activities for children and extended family members; and organisational support to practitioners. Further research is suggested to address the recommendations and assess their effectiveness empirically.Lay abstractWhile much knowledge about autism derives from high-income countries, most people diagnosed with autism reside in low- and middle-income countries, where little is documented in terms of local interventions. This is also true for parent training programmes for families of autistic children. An evaluation was conducted to understand the effects of a short-term intensive parent training programme delivered in routine services for families of autistic children in China. This study reported results from the in-depth interviews with 14 participating caregivers and group discussions with eight group leaders. The interviews and discussions were aimed at learning (1) to what extent the programme components were deemed acceptable, (2) what affected caregivers’ attendance and engagement in the programme and (3) what affected group leaders’ delivery of the programme. Findings suggested that future parent training programmes provide adequate opportunities for caregivers to practice and receive feedback; group support; coaching experience tailored to individual challenges; more autism-related knowledge, resources and activities for children and extended family members; and organisational support to group leaders. This study highlights the value of qualitative research and points to the need for more empirical studies to address the recommendations, so that research findings can be better utilised to promote practices.

SERIOUS GAMES TO TEACH EMOTION RECOGNITION TO CHILDREN WITH AUTISM SPECTRUM DISORDERS (ASD)

The serious game "JeStiMulE" (Educational Game for Multisensory Stimulation of Children with developmental disorders), developed by the Autism Resources Center of Nice, was created to teach social cognition including emotion recognition for children and adolescents with autism. The purpose of our study is to investigate the effectiveness of the serious game JESTIMULE in remediating recognition' deficits of emotional facial expressions (EFE) in autistic children. Thirty-two Moroccan children and adolescents were recruited for this study. All participants received a diagnosis of autism spectrum disorder (ASD) based on the Diagnostic and Statistical Manual of Mental Diseases, Fourth Edition (DSM-IV-R) criteria for ASD, as well as the Rimland Checklist E2. IQ level has been assessed by using Raven's Progressive Matrices as an IQ testing scale. The participants received two one-hour JeStiMulE sessions per week over four weeks. Game data were collected for each participant. The Faces test was used to quantify the progression of the ability to recognize emotions in our subjects. The results of the descriptive analyses showed suitable adaptability, effectiveness and efficiency of JeStiMulE. In Faces test, a significant difference between scores of the Pre-intervention and Post-intervention (Z= -3.58, p&lt;0.001), in favour of the Post-intervention (M=23.22, SD=2.96 versus M=27.27, SD=2.77). That indicate that participants were more accurate at recognizing emotions after JeStiMulE. In addition, a main effect of type of autism was found for the facial scale (H = 6.673, ddl = 2, p = 0.036). High-functioning autism were significantly better than Low-functioning autism at recognizing emotions from faces in both Pre-intervention and Post-intervention. With such non-verbal tool, training could start early. Thus, early management, the more the progression in the recognition and imitation of facial expressions is important, the more we gain autonomy and social integration just in time to begin school.

Sibling Support—Autism Toolkit

The content in this section is closely adapted, with permission, from the Organization for Autism Research Brothers, Sisters, and Autism resource guide for parents and caregivers. View the document in its entirety at https://researchautism.org/wp-content/uploads/2016/04/OAR_SiblingResource_Parents_2015.pdf.For a child or teen with autism, his longest lasting relationship will likely be with a neurotypical sibling or siblings. These lifelong friends, future advocates, and potential caretakers (depending on support needs and life circumstances) need guidance and support from parents. It starts with a positive framework for teaching siblings about how autism impacts their brother or sister, teaching healthy coping skills to address difficult situations or emotions, being aware of opportunities for mutual fulfillment, encouraging bonding, and making everyone feel special.Siblings might ask about autism if they’ve heard you use the term, but they’re more likely to ask about what their brother or sister is doing (ie, behaviors). There is no “perfect time” for these conversations, but starting early and revising your description for age appropriateness can be very helpful.All families experience and must manage challenges together. These challenges can be more pronounced when there is a child who has significant support needs, but it also creates opportunities for parents and caregivers to promote understanding and acceptance.Activities outside the home can be a source of stress for a child with autism, but also for siblings if a child’s autism results in behaviors that are misunderstood or misinterpreted by friends or strangers.Having a brother or sister with autism comes with many joys but also a host of feelings (confusion, resentment, etc) that can be difficult to process. Parents and caregivers can help by acknowledging these feelings, keeping lines of communication open, and suggesting healthy coping strategies.Siblings may feel distant from their sibling with autism or wish they had the same closeness they see between siblings from other families. Parents and caregivers play a critical role in building a foundation of love that exists even when there are communication or other barriers.Sibling Support Project (SSP) (www.siblingsupport.org) is a national program dedicated to the concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.Sibling Leadership Network (SLN) (https://siblingleadership.org) promotes a broad network of siblings who share the experience of disability and people concerned with sibling issues by connecting them to social, emotional, governmental, and provisional supports across the life span enabling them to be effective advocates with their brother and sister, and to serve as change agents for themselves and their families.Siblings with a Mission (www.siblingswithamission.org) provides siblings and family members an opportunity to share their stories, offer suggestions, and make friends with others who understand. They spread awareness and offer support through story columns, a resource database, monitored video conversations, Web chat forums, sibling workshops, and family conferences.Here are autism sibling support resources (https://researchautism.org/how-we-help/families/sibling-support) from the Organization for Autism Research.The Sibling Survival Guide: Indispensable Information for Brothers and Sisters of Adults with Disabilities (www.amazon.com/Sibling-Survival-Guide-Indispensable-Disabilities/dp/1606130137)The information contained in this resource should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances. Original resource included as part of Caring for Children With Autism Spectrum Disorder: A Practical Resource Toolkit for Clinicians, 3rd Edition.Inclusion in this resource does not imply an endorsement by the American Academy of Pediatrics (AAP). The AAP is not responsible for the content of the resources mentioned in this resource. Website addresses are as current as possible but may change at any time.The American Academy of Pediatrics (AAP) does not review or endorse any modifications made to this resource and in no event shall the AAP be liable for any such changes.

Sociocultural Barriers to Early Diagnosis of Autism Spectrum Disorder

&#x0D; &#x0D; &#x0D; Objective: To qualitatively explore community, family, and health care system barriers to early diagnosis of autism spectrum disorder (ASD) in children. Study Design: A phenomenological qualitative approach was used to explore mothers' experiences of receiving ASD diagnosis for their children. Place and Duration of Study: The study was conducted at Autism Resource Centre Islamabad, from March 2018 to August 2018. Materials and Methods: In-depth qualitative interviews of eight mothers of children diagnosed with ASD, who were above 36 months of age. Results: Using thematic analysis, three major themes were identified as barriers in reaching ASD diagnosis i.e. parent's lack of knowledge and misperceptions of ASD; health care system issues like undefined pathway to care, dissatisfaction with medical or associated professionals, delays due to structural and process barriers; and family factors such as stigma around mental health and disability, family denial and financial constraints. Conclusion: Additional educational outreach to families, de-stigmatization of ASD, streamlining the ASD diagnostic process, and providing additional support to parents of at-risk children may decrease delays in ASD diagnosis among children.&#x0D; &#x0D; &#x0D;

Assessment of Sesame Street online autism resources: Impacts on parental implicit and explicit attitudes toward children with autism.

The current study sought to characterize implicit bias toward children with autism and examine whether viewing educational materials about autism would change attitudes toward children with autism. A website developed by Sesame Street containing information about autism and resources for families was distributed to parents of children with autism (n = 473) and parents of children without autism (n = 707). Pre- and post-test measures of implicit bias toward children with autism; explicit attitudes and knowledge about autism; and parenting confidence, strain, and stigma were completed before and after the website was presented. Results indicated that parents of children with autism showed less implicit bias compared with those of non-autistic children during the pre-test, but the groups did not differ at the post-test. Parents without autistic children and those with more negative explicit attitudes showed a greater reduction in implicit bias from the pre- to the post-test. In addition, for parents of children with autism, a more positive change in explicit attitudes and increased knowledge from the pre- to the post-test was associated with more empowerment at the post-test. Together, our findings suggest that the online educational resources can reduce implicit bias against children with autism and help mitigate some of the psychological issues associated with parenting children with autism.

Estimation of Alpha-Synuclein Monomer and Oligomer Levels in the Saliva of the Children With Autism Spectrum Disorder: A Possibility for an Early Diagnosis.

BackgroundIn degenerative brain diseases like Parkinson's disease (PD), alpha-synuclein (a-syn) can be in its monomeric (a-syn-mono) or toxic oligomeric (a-syn-oligo) or as a total (a-syn-total) forms in the biological body fluids including saliva. Past research has observed major a-syn plasma variations in children with autism spectrum disorder (ASD) pointing toward brain degenerative components in their pathophysiology. No prior study has shown a-syn levels in ASD patients' saliva.Objective This study estimates the levels of alpha-synuclein monomer (a-syn-mono) and alpha-synuclein oligomer (a-syn-oligo) in the saliva of ASD affected children so that saliva can be a method for detecting disorder.Materials and methodsThis cross-sectional, multi-center study was conducted in Islamic International Medical College, Autism Resource Centre (ARC), and Step-to-learn Rehabilitation center for the slow learner in Rawalpindi. The research was performed for one year from August 2018 to August 2019. Saliva samples from 80 children (40 ASD affected children, and 40 age- and sex-comparable healthy controls) were collected. Specific anti-alpha-synuclein monomers (anti-a-syn-mono) and anti-alpha-synuclein oligomers (anti-a-syn-oligo) enzyme-linked immunosorbent assay (ELISA) kits analyzed the salivary samples. Mean ± SD were reported for quantitative data. The data between the two groups were compared using an independent t-test. The p-value of ≤ 0.05 was considered statistically significant.ResultsA total of 80 children were included in the study (n=40 ASD affected, n=40 healthy controls). The age of participating children was between four and eight years. The mean alpha-synuclein monomer level in the saliva of ASD children was 92.03 ± 117.09 pg/ml (p≤0.05), and in healthy subjects was 186.78 ± 239.31 ρg/ml. The levels of alpha-synuclein oligomer in the saliva of patients with ASD children were 0.13 ± 0.05 ng/ml (p<0.001), and in the healthy subjects was 0.33 ± 0.26 ng/ml. Both alpha-synuclein monomer and alpha-synuclein oligomer levels were low in the saliva of ASD children.ConclusionChildren with ASD had low levels of alpha-synuclein monomer and oligomer than healthy children which are unique than that of levels found in other degenerative brain diseases.

A comparative feasibility study of two parent education and training programmes for autism spectrum disorder in a low-resource South African setting.

After a diagnosis of autism, it is an important first step to give families information about autism and skills to help them support their child. These interventions are called Parent Education and Training programmes. Little is known about these programmes or if they can make a difference to families, particularly in countries with few autism resources. In this study, we compared two Parent Education and Training programmes in South Africa. EarlyBird/EarlyBird Plus was developed in the United Kingdom, and Autism Cares in South Africa. We wanted to know if parents found the programmes useful, and if any changes were required. We collected information from parents through questionnaires and interviews before and after the group. We also asked a panel of experts (including parents) to compare the programmes. In total, 18 parents attended the EarlyBird/EarlyBird Plus group and 11 attended the Autism Cares group. Parents found both programmes helpful and made suggestions for improvements. Parents showed less stress, more knowledge of autism, and saw improvements in their children. The expert panel rated EarlyBird/EarlyBird Plus as better because it was more supportive of parents and was seen as easier to run in the country. Our study showed that Parent Education and Training programmes are important, but that researchers must study not only the outcomes but also the implementation needs of these programmes.

Autism Cognizance: A dilemma among medical and Allied Medical practitioners.

Objectives:To determine the awareness about autism among Medical and Allied-Medical Practitioners.Methods:This cross-sectional survey recruited a sample of n=300 participants including n=150 Medical and n=150 Allied-Medical practitioners using convenience sampling from Benazir Bhutto Hospital and Autism Resource Centre, Rawalpindi, Pakistan between 20th May 2018 to 20th October 2018. Sample included both genders, aged 21 to 50 years. Basic demographic sheet and Knowledge about Childhood Autism among Health Workers (KCAHW) Questionnaire was used to collect data. Statistical analysis was done using SPSS 21.Results:Study revealed the total mean KCAHW score of 15.20 ± 5.17 and 8.84 ± 6.31 for Allied-Medical and Medical practitioners respectively. While the Domain-I mean KCAHW scores was 6.28±2.10 and 3.68±2.41; Domain-II score 0.86 ± 0.35 and 0.45 ± 0.50; Domain-III score 3.28 ± 1.00 and 1.91 ± 1.65; and Domain-IV score of 4.83 ±1.72 and 2.80 ± 1.75 for Allied-Medical and Medical practitioners respectively.Conclusion:The present study shows that there is significant awareness regarding autism among Allied-Medical compared to Medical practitioners.

Identification and Quantification of Gaps in Access to Autism Resources in the United States: An Infodemiological Study.

BackgroundAutism affects 1 in every 59 children in the United States, according to estimates from the Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network in 2018. Although similar rates of autism are reported in rural and urban areas, rural families report greater difficulty in accessing resources. An overwhelming number of families experience long waitlists for diagnostic and therapeutic services.ObjectiveThe objective of this study was to accurately identify gaps in access to autism care using GapMap, a mobile platform that connects families with local resources while continuously collecting up-to-date autism resource epidemiological information.MethodsAfter being extracted from various databases, resources were deduplicated, validated, and allocated into 7 categories based on the keywords identified on the resource website. The average distance between the individuals from a simulated autism population and the nearest autism resource in our database was calculated for each US county. Resource load, an approximation of demand over supply for diagnostic resources, was calculated for each US county.ResultsThere are approximately 28,000 US resources validated on the GapMap database, each allocated into 1 or more of the 7 categories. States with the greatest distances to autism resources included Alaska, Nevada, Wyoming, Montana, and Arizona. Of the 7 resource categories, diagnostic resources were the most underrepresented, comprising only 8.83% (2472/28,003) of all resources. Alarmingly, 83.86% (2635/3142) of all US counties lacked any diagnostic resources. States with the highest diagnostic resource load included West Virginia, Kentucky, Maine, Mississippi, and New Mexico.ConclusionsResults from this study demonstrate the sparsity and uneven distribution of diagnostic resources in the United States, which may contribute to the lengthy waitlists and travel distances—barriers to be overcome to be able to receive diagnosis in specific regions. More data are needed on autism diagnosis demand to better quantify resource needs across the United States.

SOCIAL AND FINANCIAL DIFFICULTIES OF CAREGIVERS FOR CHILDREN DIAGNOSED WITH AUTISM

Background: Autism Spectrum Disorder (ASD) is one of the most widely spread developmental disorders that has raised an urgent public health concern. Regardless of advances in modern technology and research studies there is more to the disorder to be considered in the endeavor of finding the cause and treatment. This study focuses on the caregiver’s aspect of the problem. The quality of life for caregivers of children with an ASD is very crucial for developing their children’s full potential. &#x0D; Method: Forty-five participants (n=45) were recruited from the Southeastern Pennsylvania Autism Resource Center (SPARC), the Autism Society of America – Greater Philadelphia Chapter, and Autism Alliances to voluntarily contribute to an online survey assessing the social and financial difficulties/burdens that are facing caregivers of children with an ASD &#x0D; Results: Caregivers of children with ASD are facing tremendous financial and social burdens. &#x0D; No statistical difference in financial (U=24.0, z=-0.1, p=.340) or social burden (U=26.5, z=-0.8, p=.420) between caregivers having one vs. one or more children diagnosed with an ASD. &#x0D; No statistical difference in financial (t=-1.1, p=.270) or social burden (t=-0.3, p=.764) among caregivers who had one child vs. more than one child &#x0D; Conclusion: Findings suggest an urgent need for health administrators to advocate to find solutions to the financial and social difficulties facing caregivers who have children with autism.

Clinical and Demographic Features of 76 Children with Autism Spectrum Disorders at a Centre in Pakistan.

In this cross-sectional study, 76 consecutive children with autism spectrum disorder (ASD) were studied for the clinical and demographic parameters at Autism Resource Centre in Pakistan. The median age at first consultation was 30 months, 36 months at diagnosis, and 42 months at referral to a specialised centre. Clinical psychologists, therapists and paediatricians were the most frequently involved people in diagnosis. There was an average delay of one year between the first consultation and referral to the specialised centre. The male to female ratio was 4.4:1. Consanguinity was observed in 33 (43.4%) children. Three children had another affected sibling. Half of the children were from the affluent class, while two-thirds of the parents were professionals having good education. The severity of ASD showed that 13 (17%) children had borderline features, 50 (66%) had mild to moderate ASD, while 13 (17%) had severe ASD.

Troubles de la modulation sensorielle et difficultés adaptatives dans les troubles du spectre de l’autisme

IntroductionPeople suffering from autism spectrum disorders (ASD) provide atypical responses to sensorial stimulations, indicating specific sensory processing. These responses vary from one another and within the same individual with ASD, resulting in maladaptive functional capacities in everyday life. Factors explaining those specificities are poorly defined and need to be better identified. ObjectivesTo examine the relationship between sensory modulation symptoms (SMSs) and maladaptive behaviors in a group of children with ASD. To study how the sensory processing patterns in ASD are related to chronological age, intensity of autistic symptoms, and associated intellectual disability. MethodA transversal observational study of a group of children with ASD was conducted for 1 year in an Autism Resource Centre in Marseille, France. The SMSs were assessed using the Dunn short sensory profile. The adaptive behaviors and social quotient were assessed using the Vineland adaptive behavior scale. ResultsForty-five children with ASD completed both scales. Significant correlations were found between SMS intensity and the children's adaptive behaviors. Furthermore, chronological age and intellectual disability showed a significant relationship with SMS intensity; chronological age and intellectual disability were also found to be significantly related. However, the severity of autistic symptoms was not associated with the intensity of SMSs. ConclusionThese outcomes give a better understanding of sensory processing in ASD. The analysis of sensory processing is valuable during the diagnostic phase and for the development of individualized/custom-tailored interventions.

The GapMap project: a mobile surveillance system to map diagnosed autism cases and gaps in autism services globally

Although the number of autism diagnoses is on the rise, we have no evidence-based tracking of size and severity of gaps in access to autism-related resources, nor do we have methods to geographically triangulate the locations of the widest gaps in either the US or elsewhere across the globe. To combat these related issues of (1) mapping diagnosed cases of autism and (2) quantifying gaps in access to key intervention services, we have constructed a crowd-based mobile platform called “GapMap” (http://gapmap.stanford.edu) for real-time tracking of autism prevalence and autism-related resources that can be accessed from any mobile device with cellular or wireless connectivity. Now in beta, our aim is for this Android/iOS compatible mobile tool to simultaneously crowd-enroll the massive and growing community of families with autism to capture geographic, diagnostic, and resource usage information while automatically computing prevalence at granular geographical scales to yield a more complete and dynamic understanding of autism resource epidemiology.

GapMap: Enabling Comprehensive Autism Resource Epidemiology.

BackgroundFor individuals with autism spectrum disorder (ASD), finding resources can be a lengthy and difficult process. The difficulty in obtaining global, fine-grained autism epidemiological data hinders researchers from quickly and efficiently studying large-scale correlations among ASD, environmental factors, and geographical and cultural factors.ObjectiveThe objective of this study was to define resource load and resource availability for families affected by autism and subsequently create a platform to enable a more accurate representation of prevalence rates and resource epidemiology.MethodsWe created a mobile application, GapMap, to collect locational, diagnostic, and resource use information from individuals with autism to compute accurate prevalence rates and better understand autism resource epidemiology. GapMap is hosted on AWS S3, running on a React and Redux front-end framework. The backend framework is comprised of an AWS API Gateway and Lambda Function setup, with secure and scalable end points for retrieving prevalence and resource data, and for submitting participant data. Measures of autism resource scarcity, including resource load, resource availability, and resource gaps were defined and preliminarily computed using simulated or scraped data.ResultsThe average distance from an individual in the United States to the nearest diagnostic center is approximately 182 km (50 miles), with a standard deviation of 235 km (146 miles). The average distance from an individual with ASD to the nearest diagnostic center, however, is only 32 km (20 miles), suggesting that individuals who live closer to diagnostic services are more likely to be diagnosed.ConclusionsThis study confirmed that individuals closer to diagnostic services are more likely to be diagnosed and proposes GapMap, a means to measure and enable the alleviation of increasingly overburdened diagnostic centers and resource-poor areas where parents are unable to diagnose their children as quickly and easily as needed. GapMap will collect information that will provide more accurate data for computing resource loads and availability, uncovering the impact of resource epidemiology on age and likelihood of diagnosis, and gathering localized autism prevalence rates.