Data on Developmental Disabilities Around the World

Uncertainty is a major theme of The Politics of Autism.  How common is autism?  Do rates vary around the world?  Has prevalence changed over time.  There are now efforts to address such questions.

The Lancet has an article titled "Developmental disabilities among children younger than

5 years in 195 countries and territories, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016.  The summary:

Background

The Sustainable Development Goals (SDGs) mandate systematic monitoring of the health and wellbeing of all children to achieve optimal early childhood development. However, global epidemiological data on children with developmental disabilities are scarce. The Global Burden of Diseases, Injuries, and Risk Factors Study 2016 provides a comprehensive assessment of prevalence and years lived with disability (YLDs) for development disabilities among children younger than 5 years in 195 countries and territories from 1990 to 2016. Methods We estimated prevalence and YLDs for epilepsy, intellectual disability, hearing loss, vision loss, autism spectrum disorder, and attention deficit hyperactivity disorder. YLDs were estimated as the product of the prevalence estimate and the disability weight for each mutually exclusive disorder, corrected for comorbidity. We used DisMod-MR 2.1, a Bayesian meta-regression tool, on a pool of primary data derived from systematic reviews of the literature, health surveys, hospital and claims databases, cohort studies, and disease-specific registries.

Findings

Globally, 52·9 million (95% uncertainty interval [UI] 48·7–57·3; or 8·4% [7·7–9·1]) children younger than 5 years (54% males) had developmental disabilities in 2016 compared with 53·0 million (49·0–57·1; or 8·9% [8·2–9·5]) in 1990. About 95% of these children lived in low-income and middle-income countries. YLDs among these children increased from 3·8 million (95% UI 2·8–4·9) in 1990 to 3·9 million (2·9–5·2) in 2016. These disabilities accounted for 13·3% of the 29·3 million YLDs for all health conditions among children younger than 5 years in 2016. Vision loss was the most prevalent disability, followed by hearing loss, intellectual disability, and autism spectrum disorder. However, intellectual disability was the largest contributor to YLDs in both 1990 and 2016. Although the prevalence of developmental disabilities among children younger than 5 years decreased in all countries (except for North America) between 1990 and 2016, the number of children with developmental disabilities increased significantly in sub-Saharan Africa (71·3%) and in North Africa and the Middle East (7·6%). South Asia had the highest prevalence of children with developmental disabilities in 2016 and North America had the lowest.

Interpretation

The global burden of developmental disabilities has not significantly improved since 1990, suggesting inadequate global attention on the developmental potential of children who survived childhood as a result of child survival programmes, particularly in sub-Saharan Africa and south Asia. The SDGs provide a framework for policy and action to address the needs of children with or at risk of developmental disabilities, particularly in resource-poor countries

The Demographics of Identifying Autism

PsychCentral reports:

The rate of autism in children of all races is on the rise; however, students who are black, Hispanic, or American Indian are less likely to be identified with an autism spectrum disorder compared to white and Asian students. This is according to a new study published in The Journal of Special Education.

In the study, researchers figured out a risk index — a percentage of all enrolled students from a racial group with a specific disability. The index was based on data collected by the federal government from 1998 to 2006 regarding students in special education.

The overall risk of being categorized as having autism increased for all racial groups over that time period, from 0.09 percent to 0.37 percent.

The abstract:

A Multiyear National Profile of Racial Disparity in Autism Identification
Jason C. Travers, PhD, BCBA-D1  Matt Tincani, PhD, BCBA-D2 Michael P. Krezmien, PhD1

Disproportionate representation of racially diverse students in special education is a well-documented problem, yet few studies have systematically evaluated disproportionate representation of diverse students with autism. This study examined disproportionate representation of racially diverse students with autism by determining risk and logistical odds ratios among racially diverse and White students from the national population between 1998 and 2006. Although overall risk of autism increased for all racial groups every year, White students were twice as likely to be identified with autism as Hispanic and American Indian/Alaskan Native students during most years of the sample. Although initially overrepresented, the odds ratios for Asian/Pacific Islander and Black students with autism continuously declined in recent years. Hispanic and American Indian/Alaskan Native students were significantly underrepresented every year in the analysis. Potential cause and implications of underrepresentation are described, along with directions for research.

Autism in South Asia

The BBC reports:

A two-day international conference on autism has begun in the Bangladeshi capital, Dhaka.

Experts and policy makers from around the globe will focus on promoting awareness on autism in Bangladesh and other South Asian countries.

The standard of diagnosis and care for autistic children in the region are said to be basic.

...

Bangladesh doesn't have specific data on those affected by autism but officials estimate that around 150,000 children may be classified as autistic.

"In a country like Bangladesh, we don't have the institutional facilities to diagnose what is the status," says Farah Kabir, from the aid agency Action Aid Bangladesh.

"If a family is fortunate enough to be able to afford to take an autistic child to a specialist hospital, then when they come back they don't have the facilities to follow up."

She says the most important thing is to create awareness that autistic children can be found as in many parts of the globe and how to deal with these children on a day-to-day basis.

During the two-day conference, the participating countries will also establish South Asia Autism Network to identify solutions to common challenges faced by each country and to provide training and conduct further research on the subject.

High-profile personalities like the Bangladeshi Prime Minister, Sheikh Hasina, and leader of India's governing Congress party Sonia Gandhi will be addressing the conference.

The [Dhaka] Daily Star reports:

A seven-point Dhaka Declaration on Autism Spectrum Disorders and Developmental Disabilities adopted Monday called for promoting stronger coordinated actions in the region and globally towards the improvement of the access and quality of healthcare services for individuals with autism and developmental disorder.

The declaration read out by Sri Lankan First Lady calls for increasing awareness of the rights of the children with developmental disorder and highlighting social responsibilities to persons with such disability

It stresses on strengthen health system capacities to address the needs of the children with developmental disorder and their families.

It calls for improving capacities of professionals involved in provision of integrated care services for children with developmental disorder at various levels, from primary healthcare and communities to socialized services.

The declaration asks for mobilizing and allocating increased human and financial resources for healthcare of the children with developmental disorder and gradual implementation of the identified priority actions.