Leaving no disabled child behind: Autism numbers are only part of the story

The Deputy Women, Family and Community Development Minister (KPWKM), Lim Hui Ying, recently reported in Parliament that 93,000 out of 850,000 persons with disabilities registered with the Social Welfare Department (JKM) as of last June are autistic. This has created concern with calls to upscale services.

It is important to view this data in a wider context. The number of children with disabilities in the country is huge, with the majority being underserved and our government initiatives lagging behind those of our Asean neighbours. This is not a problem only for children with autism, but for all children with disabilities.

Number of Children with Disabilities

As of June 2026, JKM data shows 230,775 children with disabilities have registered. This number only reflects registered children. The disability registration process exposes children with disabilities to discrimination, especially in accessing the right to mainstream education and training, insurance coverage and future employment. Hence, many families hesitate to register with JKM. There is gross under-representation of girls in JKM registrations, with female-to-male registrations at 1:2.

The latest Unicef (2025) data show that 12% to 13% (1 in 8) of all children live with disability. Using the 2025 population estimate of 9.03 million children under the age of 18 years (Department of Statistics Malaysia 2025), the registered children with disabilities constitute only 2.6% of all children, far below the 12-13% from Unicef data. This means that more than 850,000 children with disabilities in Malaysia are not registered. Of these, many would be children with specific learning disorders (e.g., dyslexia), ADHD (Attention-Deficit/Hyperactivity Disorder), autism, etc. Note that there are many more underserved children with specific learning disorders than there are autistic children.

The scope of need is hence huge, far exceeding that indicated by the Deputy Minister of KPWKM. The majority of children with disabilities are not recognised and not supported. This occurs over the whole diverse spectrum of childhood disabilities, not just autism.

Children with Disabilities Underserved

The lack of services is not a new issue. Many of us have been highlighting it to policymakers for many decades. Even for children identified, the waiting time to see a paediatrician, specialist or an appropriate therapist (eg audiologist, speech and language therapist, occupational therapist, physiotherapist, child Psychologist) is extremely long, often exceeding six months. The necessary therapy after the first visits is also very limited and infrequent. The Health Ministry (KKM) has not invested in the staffing of the necessary therapists to meet the need, even though the universities produce reasonable numbers.

Compounding this is that university medical curricula lack adequate disability training; most doctors lack knowledge and skills to assess disabled children, especially those with learning disabilities.

Furthermore, it is not possible for a handful of developmental paediatricians or rehabilitation medicine specialists to meet the service needs. It requires the entire paediatric specialist workforce to work together with the family medicine specialists. Public-private partnership seems like a quick fix, but is not a solution and is very expensive.

For optimal outcomes, the child who is identified with a possible disability should be seen as soon as possible (within a month) and begin therapy and early intervention as early as possible. The first two to three years of a disabled child’s life significantly impact developmental trajectories; hence early childhood intervention (ECI) is critical. There are limited government-initiated ECI centres. Most ECI is provided by non-profit civil society organisations (CSOs) but they have long queues. Children with disabilities from B40 families, especially in rural communities and Sabah can neither afford nor access non-profit ECI services.

Meaningful Solutions to Address the Crisis

1. Stop using JKM voluntary registration data for service planning and budgeting. Use international disability prevalence estimates (12-13% of children) for all government planning, financial budgeting, and service provision.
2. Plan not just for autism but for all types of disabilities.
3. Revise the university training curricula for undergraduate and postgraduate medical and allied health personnel, to have a strong focus on understanding childhood disability and rehabilitation.
4. The government should mainstream and fund all CSO early childhood intervention (ECI) services, and mandate private ECI services to have a fee schedule and a cap on service charges.
5. Work towards enabling all rural, indigenous and marginalised communities to access ECI services. This also requires a dramatic upscaling of the Community-Based Rehabilitation centres (PDKs) under JKM to a professional level on par with that provided by CSOs.
6. Reflecting on KKM staffing needs the actual numbers that we need of audiologists, speech and language therapists, occupational therapists, physiotherapists and child psychologists. Hire all the graduates from our local universities.

DATUK DR AMAR-SINGH HSS

WONG HUI MIN

NG LAI THIN

SAN YUENWAH

ANIT KAUR RANDHAWA

Joint Statement from the National Early Childhood Intervention Council (NECIC) and The OKU Rights Matter Project