Dr Shabina Ahmed
(shabinaloveschildren@gmail.com)
The United Nations designated 2nd April as World Autism Awareness Day (WAAD) in 2007 in a resolution taken in the General Assembly, A/RES/62/139, to highlight the need for raising public awareness. Since then discussions have been on various aspects of autism with various themes to promote full realisation of human rights, fundamental freedom and equal participation in the society. This year’s WAAD theme is “Advancing Neurodiversity and the UN Sustainable Development Goals (SDGs)”. SDG 10 concerns reducing inequalities, thus shaping policies that promote full societal participation.
Autism advocacy has come a long way, but there are still major areas that need to be addressed. Globally the incidence of autism is rising. The Centre for Disease Control and Prevention in the USA gives a prevalence rate of 1 in 36 children in sharp contrast to the prevalence two decades ago, which was around 1 in 100 children. In India, we do not have any pan-India population studies, but a few community-based studies addressing children from age group 1-10 years reported a prevalence of 15/15,000 (0.15%). The approximate estimated prevalence in India is around 1 in 68, as published in the Indian Journal of Paediatrics in 2021. Autism is not a disease that can be cured; it is a lifelong complex condition that manifests
during early childhood and continues throughout a lifetime. It is important to note that this year marks the 100th anniversary of Dr Grunya Efimovna Sukhareva’s pioneering publication, which provided the first clinical description of autism. Hence, with the rise in incidence, we expect to see more and more autistic individuals and an increased number of adolescents and adults. This brings 3 concerns to our minds.
Firstly, are we tackling the early years adequately, and is it meeting the demand and supply of this human-intensive assessment and interventions? The present management of symptom-deficit autism children by a multidisciplinary team is not addressing the child in a holistic manner, as there is no uniformity in the delivery system. Due to a lack of qualified professionals, parents are going across the country to get a diagnosis and avail therapies. In the process, there is loss of monetary resources causing harassment to families. Delay in intervention can be costly for neurodevelopmental conditions, as critical periods of brain development are missed. We must design spaces that work for everyone, as in building inclusive cities and communities (SDG 11).
A stepped care model is required to bridge this divide. Two pillars for such an approach have been suggested. One is to develop a suitable non-specialist workforce, accredited social health activists, ASHAs and Anganwadis, parents and caregivers. Two, it is appropriate digital technology to capture self-reported observations and tasks.
Secondly, how many children are going to mainstream schooling and to higher secondary level? SDG 4 is about creating inclusive learning environments for all. Are they transitioning well into adolescence, and what are the services available for them? Determining the exact number of autistic students enrolled in higher education in India and Western countries has been challenging due to variations in diagnosis and presentation of these children. Lithuania has only 0.1%, and England 1.2%, in higher secondary schools. Though some of them are mainstreamed, many of them have to be placed in special classes or units with limited time in general education.
Thirdly, how many adults have reached gainful employment? Research has shown that there are challenges in all the above issues. Presently, we are in an intersection between understanding neurodiversity and global sustainable efforts to reach the Sustainable Development Goals (SDG 8) of 2030. SDG 8 is about workplace accessibility, thereby unlocking the potential of a neurodiverse workforce.
Employment rates for adults with autism vary significantly across different regions, reflecting diverse challenges and opportunities. In India there is no specific data available. In the USA, unemployment of autistic individuals is from 85% to 90%. Significant global employment challenges underscore the need for inclusive hiring practices and supportive workplace environments. The way forward would be manifold. Advocacy efforts must focus on acceptance along with awareness.
The autistic voices have to be listened to. Those of them who can speak must be their own advocates along with their parents. Their voices must be heard in all inclusive policy matters, all part of SDG 3, thereby ensuring healthcare systems that support autistic individuals. One needs to challenge the harmful stereotypes of being portrayed either as a genius or someone completely incapable of independence. We have to focus on the broad range of abilities and uniqueness and understand their challenges. Neurodiverse children can be a great asset to a workplace. We need to be familiar with their characteristics. Healthcare professionals must understand that they must also provide rights-based services and support the intersectional needs of those with coexisting disabilities and comorbidities.
Management should focus more on supporting the needs of the child in a way that respects autonomy and dignity rather than forcing them to conform to normal neurotypical expectations. They need help in smooth transitioning and preventing school and workplace dropouts. There is a need for better workplace inclusions, with flexible schedules, a quiet ambiance and incorporating alternatives in communication. Our hiring practices should change, taking into consideration automation and AI integration, where creative problem-solving neurodivergent employees offer valuable skills.
We need to rethink the diagnosis and service accessibility, being more accessible and inclusive across different populations. There has to be a shift from a multidisciplinary to a more naturalistic approach. Additionally, functional capabilities must go pari passu with their level of development.
Despite policies promoting inclusion, challenges persist. Approximately 45% of Indian individuals with disabilities are illiterate, with only 9% completing secondary education. Any inclusion plan must invest in the environmental and support services, mainly addressing the teacher training constraints, cultural attitudes and improved data collection, and by celebrating the day, the UN states that it “addresses this global concern, mobilises resources, increases awareness and remains as a powerful advocacy tool”. We need to learn to accept and celebrate our differences.