By Dr Shabina Ahmed
The United Nations designated April 2nd as World Autism Awareness Day (WAAD) in 2007 through a General Assembly resolution, emphasizing the need to raise public awareness about autism. Since then, discussions have been held on various aspects of autism, with different themes each year aimed at promoting the full realization of human rights, fundamental freedoms, and equal participation in society. This year the theme is “Advancing Neurodiversity and the UN Sustainable Development Goals (SDGs).”
Autism advocacy has made significant progress, but there are still critical areas that need to be addressed, especially their neurodiverse nature. Globally, autism prevalence is rising. The Centres for Disease Control and Prevention (CDC) in the USA estimates a prevalence rate of 1 in 36 children, a sharp contrast to the rate two decades ago, which was approximately 1 in 100 children. In India, while there is no nationwide population study, community-based research addressing children aged 1-10 years has reported a prevalence of 15 per 15,000 (0.15%). The estimated prevalence in India is around 1 in 68, as published in the Indian Journal of Pediatrics in 2021.
Autism is not a disease that can be cured; it is a lifelong neurodevelopmental condition that manifests in early childhood and continues throughout life. This year also marks the 100th anniversary of Dr. Grunya Efimovna Sukhareva’s pioneering publication, which provided the first clinical description of autism.
With the increasing incidence of autism, we expect to see a growing number of individuals on the spectrum, including more adolescents and adults. This raises three key concerns:
- Early Intervention and Accessibility: Are early intervention programs meeting the growing demand for autism assessment and intervention? Current multidisciplinary approaches to autism management lack uniformity in service delivery. Due to a shortage of qualified professionals, many parents travel across the country seeking diagnosis and therapy, leading to financial strain and delays in critical intervention periods. A stepped-care model is required to bridge this gap. This model should include:
o Developing a trained non-specialist workforce, including Accredited Social Health Activists (ASHA), Anganwadi workers, parents, and caregivers.
o Utilizing digital technology to capture self-reported observations and support intervention.
- Education and Transition to Adulthood:How many autistic children are integrated into mainstream education, and how well do they transition into adolescence? Determining the exact number of autistic students in higher education is challenging due to variations in diagnosis and presentation. Some isolated studies report only 0.1% in Lithuania 1.2% in England of autistic students in higher secondary education. While some are mainstreamed, many require special classes or units with limited inclusion in general education settings.
- Employment and Economic Inclusion:How many autistic adults attain gainful employment? Research highlights significant challenges in employment opportunities for autistic individuals. Employment rates vary widely across different regions, reflecting diverse challenges and opportunities. In India, specific employment data is lacking, but in the USA, unemployment among autistic individuals is estimated at 85%-90%. These statistics underscore the urgent need for inclusive hiring practices and supportive workplace environments.
The Way Forward: Advocacy efforts must shift from mere awareness to active acceptance and inclusion. Autistic individuals must be heard, with those who can advocate for themselves playing a leading role alongside their parents. Their voices should influence inclusive policymaking.
Society must challenge harmful stereotypes that portray autistic individuals either as geniuses or as completely incapable of independence. Instead, the focus should be on their diverse abilities and unique challenges. Neurodiverse individuals can be valuable assets in workplaces, and employers must become familiar with their strengths.
Healthcare professionals should adopt rights-based services that consider coexisting disabilities and comorbidities. Rather than forcing autistic individuals to conform to neurotypical standards, support should be centered on autonomy and dignity. Efforts should be made to prevent school and workplace dropouts by ensuring smooth transitions.
Workplace inclusivity must improve through flexible schedules, quiet environments, and alternative communication methods. Hiring practices should evolve to accommodate automation and AI-driven industries, where neurodivergent employees can contribute unique problem-solving skills.
There is also a pressing need to rethink autism diagnosis and service accessibility, making them more inclusive and available across different populations. A shift from a purely multidisciplinary approach to a more naturalistic model is required, ensuring that functional capabilities align with developmental levels.
Despite policies promoting inclusion, challenges persist. In India, approximately 45% of individuals with disabilities are illiterate, and only 9% complete secondary education. Any effective inclusion plan must invest in environmental and support services, including teacher training, cultural attitude shifts, and improved data collection.
This year’s WAAD theme, “Advancing Neurodiversity and the UN Sustainable Development Goals (SDGs),” underscores the importance of addressing this global concern, mobilizing resources, increasing awareness, and advocating for change. By celebrating this day, the UN aims to create a more inclusive society where differences are accepted and valued.
(Published for Autism Awareness): Author’s Email:[email protected])