From awareness to action: How global health is embracing the growing challenge of autism

When Merry Barua first sensed something different about her son Neeraj, he was barely two years old. "He would pick up a cup and drop it," she recalls. "He was a bit slow; he did things differently." But when she brought up her concerns, the pediatrician reassured her everything was fine. It was the mid-1980s, and autism was still a distant, unfamiliar word, rarely spoken and scarcely understood by most.

What followed was a long journey, from confusion and judgment to understanding, unconditional love and action.

(Merry Barua, Founder and Director, Action for Autism, India with her son Neeraj)

Early understanding of autism

For many years, awareness and understanding of autism remained limited, often leading to misdiagnoses, stigma and inadequate support for those affected.​ Autism was first described by Dr Leo Kanner in 1943 as a neurodevelopmental disorder characterized by challenges in social interaction, communication, and repetitive behaviors, autism was long marginalized in both health systems and society. Despite increasing prevalence, efforts to address the needs of autistic individuals advanced slowly.

From the late 20th century onwards, scientific progress and advocacy efforts began to shift this narrative. Over the past decade, autism has moved from being a largely misunderstood condition to one that is increasingly acknowledged and integrated into mainstream society. This transformation is evident across sectors. In education, inclusive models have been adopted by many schools, integrating students with autism into general classrooms, workplaces have started to recognize the valuable contributions neurodiverse individuals, and public awareness has also grown, spurred by initiatives such as the United Nations' designation of World Autism Awareness Day, which has encouraged global action towards inclusivity and acceptance.

Early professional experiences in education and psychology have played a key role in evolving this understanding. In 2006, while working in Florida, USA, Saima Wazed contributed to the development of district-level guidelines for ASD screening, assessment, and Individualized Education Programs (IEPs). Her work conducting neuropsychological and psychoeducational assessments for individuals with autism and other mental health conditions informed a growing interest in advancing inclusive policies and support systems in this field.

By 2011, momentum was gaining ground in WHO South-East Asia Region. That year, a 'Conference on Autism Spectrum Disorder and Developmental Disabilities' was organized in Dhaka, in collaboration with the Government of Bangladesh, WHO, Autism Speaks, and partners., it marked a turning point, catalyzing national and regional dialogue, raising awareness, and informing subsequent legislative and policy initiatives to strengthen autism care and support systems.

The event included over 200 parents and children with disabilities, ensuring that lived experiences informed strategies and actions. The event culminated in the adoption of the Dhaka Declaration on Autism Spectrum Disorders and Developmental Disorders (26 July 2011)‎, a milestone commitment by participating countries to promote early diagnosis, inclusive education, public awareness, and coordinated multi-sectoral action. The declaration laid the foundation for ensuing regional and global policies on autism and the growing global commitment to address autism and neurodevelopmental disabilities.

The increased visibility and commitment generated by the conference contributed to the adoption of three major international resolutions: in 2012, the WHO Regional Committee for South-East Asia passed resolution SEA/RC65/R8, calling for 'Comprehensive and coordinated efforts for the Management of Autism Spectrum Disorders (ASD) and Development Disabilities' across the Region. That same year, the United Nations General Assembly adopted resolution 67/82, 'Addressing the Socioeconomic Needs of Individuals, Families and Societies Affected by Autism Spectrum Disorders, Developmental Disorders and Associated Disabilities'. emphasizing the socioeconomic challenges faced by individuals and societies affected by autism and developmental disabilities; and, in 2014, the World Health Assembly endorsed resolution WHA67.8, further reinforcing global commitment to addressing autism and neurodevelopmental disorders.

Launch of the Global Initiative on Autism (GIA)

In November 2014, the Foundation for Neurodevelopmental Disorders and Mental Health (FDNM), an organization led by Saima Wazed, organized a one-day workshop and a high-level side event on autism spectrum disorders during the annual WHO South-East Asia Regional meeting of Member States. The session was attended by WHO's Director General Dr Margaret Chan as well as all 11 ministers of health for the region, launching the Global Initiative on Autism (GIA), marking a major step forward in advancing autism.

That same year, the World Health Assembly adopted the landmark resolution WHA 67.8, "Comprehensive and Coordinated Efforts for the Management of Autism Spectrum Disorders, reinforcing the call for coordinated international action on ASD management. Supported by more than 60 countries, the resolution urges WHO to collaborate with Member States and partner agencies to strengthen national capacities to address ASD and other developmental disabilities and marked a turning point, firmly positioning autism as a global public health priority.

For her work on autism and neurodevelopment disorders, Wazed was conferred the 'Excellence in Public Health' award by WHO South-East Asia Regional Office (2014), and the Ibrahim Memorial Gold Medal in 2016 by the Dr Ibrahim Memorial Council, Bangladesh.

At the national level, Wazed played a lead role driving policy changes in Bangladesh. In 2013, her advocacy contributed to the passage of two vital laws: the Persons with Disabilities Rights and Protection Act and the Protection of Persons with Neurodevelopmental Disability Trust Act. These initiatives ensured that individuals with ASD received legal protection and access to essential services. ​

In 2016, under her leadership as Chairperson of the National Advisory Committee on Autism and Neurodevelopmental Disorders, Bangladesh adopted the National Strategic Plan for Neurodevelopmental Disorders, marking a significant step towards strengthening services and protections for autistic individuals and their families. That same year, in recognition of her unwavering commitment to advancing autism on public health agendas, Wazed was named WHO Champion for Autism in WHO South-East Asia Region.

Building on this momentum, in 2017, she designated as the WHO Goodwill Ambassador for Autism in the South-East Asia Region.

Announcing her appointment, Dr Poonam Khetrapal Singh, who was then the WHO Regional Director for South-East Asia, said, "Ms Hossain's passionate and persistent efforts for addressing autism are commendable. She has been making significant contributions towards creating awareness and generating action to address and elevate the sufferings of people affected by autism"

That same year, in April the International Conference on Autism and Neurodevelopmental Disorders (ANDD2017) was held in Thimphu, Bhutan. The conference was jointly organized by the Ministry of Health and Family Welfare of Bangladesh, the Ministry of Health of Bhutan, and the WHO South-East Asia Regional Office, with technical support provided by the Shuchona Foundation (formerly the Foundation for Neurodevelopmental Disorders and Mental Health). The three-day conference brought together a wide range of experts, policymakers, and advocates. Among the key outcomes were the adoption of the Thimphu Declaration and the development of the WHO 'Collaborative Framework for Addressing Autism Spectrum Disorders in the South-East Asia Region', both of which laid the foundation for strengthened regional cooperation and action on autism.

(Participants at the International Conference on Autism and Neurodevelopmental Disorders (ANDD2017)

In her capacity as Chair of the Scientific Committee for ANDD2017, Wazed emphasized the need to move beyond dialogue and translate ideas into action. She shared her hope that the intensive discussions, knowledge exchange had resulted in those present continuing to work towards making a lasting change about how participants think about autism and NDDs and be motivated to forge ahead to include those with disability in future planning. She also shared part of a powerful message she had received from a parent in the lead-up to the conference:

"I and other parents, caregivers, ASD children, and adults are counting on you to fill in for us-to safeguard, protect, and defend our loved ones as their advocate, interpreter, and the loudest voice in the room, in Bangladesh, Bhutan, and all over the world. Let the world know that they are more than their diagnosis and more than their limits and disabilities, and above all, they are people-with emotions, likes, and dislikes. Not because they have special needs and need more kindness and love, but because they are people. And all people need more kindness and love. Just like you changed our vision, preconceptions, and ideas, I know you will do the same with others along the way."- From an anonymous parent

By 2019, Wazed's influence on the global stage deepened further as she was appointed an advisor to the WHO Director-General on mental health and autism. In this role, she has been instrumental in shaping international strategies and frameworks to advance autism advocacy and promote mental health reforms globally.

Autism: The long road to action

Autism also known as autism spectrum disorder (ASD) is a diverse group of neurodevelopmental conditions that affect how the brain develops and functions. It is estimated that about 1 in 100 children worldwide has autism. While signs of autism can often be recognized in early childhood, many individuals are not formally diagnosed until later in life.

Autism is commonly marked by challenges in social interaction and communication, as well as distinctive patterns of behaviour, interests, and activities. These may include difficulties with transitions between tasks, a heightened focus on details, or atypical responses to sensory experiences. However, autism manifests differently for each individual. Some people with autism live independently and thrive in their communities, while others require substantial, lifelong care and support.

In addition to the core characteristics, autism frequently co-occurs with other conditions such as epilepsy, anxiety, depression, attention deficit hyperactivity disorder (ADHD), sleep disorders, and self-injurious behaviours. Intellectual abilities among autistic people range from profound impairment to exceptional cognitive strengths.

The impact of autism often extends beyond the individual to affect family members and caregivers, who may face considerable emotional, financial, and social demands. Evidence-based psychosocial interventions can play a key role in improving communication and social skills, positively affecting the well-being and quality of life of autistic individuals and their families.

Championing the cause of Autism for over two decades, Wazed has been addressed various high-level events and forums.

"The issue is not if governments do enough [on autism] the issue is if the governments know what needs to be done. Once you make them understand, the challenge is that It's not that we are looking only at the health sector, where we can identify them such as opportunity for special education classes, when we make them realise that it is a life-long issue, that the support needs to be life-long and there are a diverse set of needs, then they themselves are much better informed and proactive."

(Saima Wazed speaking at the "Autism and the 2030 Agenda: Inclusion and Neurodiversity" event at the United Nations on 1 April 2016)

Challenges and the road ahead

While progress has been made, autism continues to pose a significant global health and social challenge. Many individuals with autism still face delayed diagnosis, limited access to services, and a lack of inclusive opportunities, particularly in low- and middle-income countries.

Early intervention and community-based care have proven effective, but scaling these services requires stronger health systems and cross-sector collaboration. As autism becomes more visible on global agendas, the focus must now swiftly shift from awareness to accelerated action ensuring that autistic individuals everywhere receive the support they need to thrive.