How common is autism?
When parents are told that their child has or is at risk of autism, their first reaction is shock and then disbelief. They often think “how can this happen to us?” and then go on to “why is this happening to us?” Most people spend about six months to one year trying to make sense of it. They try to rationalize the symptoms; they hope the diagnosis is not correct and that the child will achieve the milestones in another year and things will then be alright.
People seem to believe autism is a rare condition and most people haven't heard of it before. However, the actual prevalence numbers tell a different story. The highest prevalence numbers come from the Autism and Developmental Disabilities Monitoring (ADDM) Network of the Center for Disease Control (CDC) in the US. According to their 2020 estimates, 1 in 36 children aged 8 were on the autism spectrum - that is about 3 children per hundred. In the same year, CDC estimated the prevalence of autism in adults at about 2.21% - that is about 2 persons per hundred. The World Health Organization has a lower estimate of about 1 in 100 worldwide, based on a review of about 71 studies across the world from 2012-21.
The prevalence numbers for India are not reliably available but the scientific community agrees that the biochemical pathways involved in core autism are unlikely to be different in different populations. This means that the prevalence of autism in India is likely to be closer to the worldwide estimates of about 1 to 3 people per hundred. This means about 1.3 - 1.5 crores of people on the autism spectrum, which is very significant.
What do these prevalence numbers mean? It means we need more awareness about autism because it is not as rare as people believe. We need more awareness in new parents and to-be parents so we are all better prepared. It means we need more facilities, resources and a coordinated action plan for autism in place of the current status where the responsibility is with individual parents.
There is another thing that comes to mind - World Health Organization estimates about 1 in 6 people across the world experience a ‘significant disability’ - that is about 16% of the population, numbering about 1.3 billion people. CDC also reports that about 1 in 6 (16%) children aged 3-17 years were diagnosed with a developmental disability in the study period of 2009-17. However, those of us who do not have any disability continue to believe that disabilities are rare, we ignore how common they are and continue to build a world that excludes those with disabilities. That way, people living with disabilities are one of the largest voiceless minorities in the world.
In such a world, it is no wonder that people go on without awareness of the incidence of disabilities, they are not educated about the possibility of a disability in their children, and are shocked and surprised when something like autism shows up at their doorstep.
These prevalence numbers should make us all aware of the size of the issue, jolt us out of the ignorance and get us started on the path of building more awareness, being more empathetic and inclusive in our daily lives. Listening to autistic people and including their perspectives in conversations about autism is vital for creating supportive and respectful environments.