Autism is Me: Dispelling common myths

According to the American Psychiatric Association, autism spectrum disorder (hereafter 'autism') is a lifelong neurodevelopmental condition diagnosed on the basis of early-onset social communication and difficulties in social interaction, as well as restricted and repetitive interests, activities, and behaviors.

The neuro-condition is often undermined by pathologizing autism as disease or disorder. However, modern science has dismissed such views since autistic individuals do not typically understand themselves within a pathology model. Health practitioners all over the world are currently experiencing a staggering increase in the number of children coming to attention.

A recent estimate by Bangabandhu Sheikh Mujib Medical University (BSMMU) confirmed that almost 2 in 1000 children have autism in Bangladesh, where the prevalence is much higher in urban areas.

There is a greater consensus among learned communities that the more an individual knows about autism, the better inclusive environment he or she can create for autistic children. Therefore, I am sharing my personal experiences in this regard to contribute a little to the current awareness and advocacy initiatives for autism. 

Here is the list of myths that I have encountered in the last six and half years.

Myth 1: Autistic children are 'sick'

The most common misperception I have encountered ever since my daughter was diagnosed with lower-spectrum autism is that 'Allah baccha ta ke shushto kore dik (May Allah cure the baby) and 'or jibonei Allah emon dilo' (God gave something like that in her life!!!).

Close family members and relatives often express a deep sense of frustration in front of my daughter as if we are cursed with autism. There is a plethora of scientific studies that indicate many children on the spectrum feel anxious, disturbed, and exhausted when people around them are upset and express such frustrations. 

As many autistic children have a very keen sense of the emotional states of others, probably more than neurotypical people, they fall into the vicious cycle of emotional conflicts and don't know how to tackle them, leading to emotional turmoil. 

The universal truth is that there is no 'one-size-fits-all' treatment for autism and the goals of the existing clinical and non-clinical methods are to maximize children's ability to function by supporting development and learning.

Myth 2: Autistic children are "talented"

The second most common misconception among many about autism is that autistic children are extraordinarily talented and exhibit phenomenal mental abilities. The most common argument I heard as a father was 'ora kintu genius hoi' (they are usually geniuses). 

People try to assure us by bestowing a feeling of comfort that my daughter also has the potential and aspirations to become a NASA astronaut or the next generation Elon Musk. Though she is not less intelligent than other children, such misconceptions apparently create social overload and will push the child into a panic. 

Research has revealed that children with ASD have greater degrees of stress chemicals in their nervous system because the system usually remains taxed and drained throughout the day. Even most of the daily school tasks drain away much of their energy. 

Therefore, loftier intellectual expectations from children on the spectrum build up the stress chemicals quickly, and by the time autistic children realize it, their coping skills often collapse. 

The paramount truth is that children with autism may or may not be aberrantly intelligent just like others in society. It is essential to realize that each and every autistic kid has his or her own pace of doing things and we must respect their emotional states and intelligence by neither overstating nor undermining them. 

Myth 3: The word 'autistic' is 'abnormal'

Whenever I make an attempt to tell the truth by introducing my daughter as an autistic child, I receive an overwhelmingly bizarre reaction from many. Some people even get enraged at me for the word 'autistic' I use. 

This is common in our culture that people often wonder if they should say "person with autism" or "autistic person" when talking about children or adults on the spectrum. 

Autistic is not an offensive term; however, it is better to apply a person-first style while introducing a person with autism. The way we introduce a person with autism reflects how we think about it, and how we prioritise the needs of him or her. 

Though there is no globally accepted uniform approach to addressing the issue, by calling a person with autism 'autistic', I recognize, affirm, and validate an individual's identity as an autistic person, and I never treat it as a tragedy or curse for the family. 

Instead of coming to a concrete way of introducing a person with autism, I firmly believe in individual freedom to identify a person with autism in the decent way possible within the globally accepted appropriate terms.

Myth 4: Autistic children are 'mad' and 'violent'

I have recurrently observed that many people speculate and hypothesise that autistic children are violent, and that they remain extraordinarily vigilant when children with autism visit them in their places. 

Sometimes people, in contrasting situations, try to forge extra comfort for autistic children that makes their behavior incompatible with neurodivergent children when they are with other neurotypical children. 

Such animosities make it difficult for many children on the spectrum who find emotional and behavioral regulation challenging. Since emotional and behavioral regulation are interlinked, it is a matter of basic understanding that emotional dysregulation overwhelms autistic children and meltdowns occur quickly. 

Hence, without addressing our behavior towards autistic children, it cannot be generally expected that neurodivergent children would be able to regulate their emotions leading to behavioral dysregulations. 

Neurodivergent children predominantly have a poor ability to check impulses, impaired ability to assess what is needed, inability to act organized, and inability to evaluate their actions and their consequences.

While reading books on parenting for children with autism, I have come across the concept of 'pacing' as a technique for emotion and behavioral regulation. The technique asserts that the parent or the people around the children with autism do certain tasks with them, right alongside them, setting the pace and teaching them to match it. 

In this process, they learn to pace themselves by referencing or following the person who facilitates the tasks. Many people often tag the word 'mad' for autistic children. Many children on the spectrum, including my daughter, often exhibit inappropriate behavior (as defined by the neurotypical people) in a situation where others do not expect it. 

This does not necessarily mean that these children cannot identify the emotions or the sensitivity of the given situation. Many on the spectrum can actually feel it but cannot process it due to poor connectivity between the components in their brains. Psychologists term it the "weak connectivity" model of autism. 

We all are probably aware that the right side of the human brain deals with emotional, intuitive, and subjective reasonings, while the left side is the more factual, logical, and intellectual thinking part of the brain. Identifying, labeling, evaluating, understanding, and controlling emotional sensitivity exclusively depends on the integration of our right and left brain. 

With many on the spectrum, there is poor left/right brain integration, so emotional sensitivity cannot be adequately interpreted by the logical part of the brain. Scientific studies indicate that there is deficiency in left-right brain integration that leads to lowered emotional sensitivity due to lack of interpretation by the logical part of the brain.

Myth 5: Autistic children 'cannot make decisions'

Many people often determine that 'ora ki bojhey naki je nijey nijey decision nebey?' (Do they understand enough to make their own decision?). 

These people imagine that children with autism must rely on intellectual and logical inputs from parents and close family members or caregivers, and hence, they should not be asked or should not be given choices to make decisions. 

For me, this impedes the brain development of children on the spectrum by limiting their freedom to explore and learn from interpersonal relationships and communication. 

According to a study by the University of Nebraska - Lincoln, choice-making is an effective intervention for increasing the active participation of individuals with autism by allowing them to make a choice between at least 2 items/activities/reinforcers, etc. 

Choice-making can be used throughout the daily routine.  Parents or teachers or caregivers can gradually expand the number of choices based on the needs and level of functioning of children, and they can respond in various ways by pointing at objects or pictures or by verbalising their choices. 

Several studies also validated that individuals with ASD demonstrated slower decision-making and superior performance compared to neurotypical individuals.

The Way Forward

Millions of children are suffering in silence in the absence of a proper and adequate understanding of autism. Early detection of autism at the age between 18 and 24 months is the key to proper management. 

Practitioners worldwide bring attention to adopting a two-stage early detection strategy: monitoring for signs of autism within the context of routine developmental surveillance; and in cases of concern, followed by the use of an early autism screening instrument to identify children at highest risk. 

Therefore, urgent action must be taken to ensure early detection in urban and rural health centers by decentralising health services. 

Cultural sensitisation through inclusion of disability-related topics in school textbooks, teacher training, social media campaigns, development of disability-friendly ICT tools, and dissemination of information through religious institutions can integrate more children with autism into the mainstream educational landscape.

Although Bangladesh is playing a commendable role in the implementation of appropriate policies and social awareness and intervention programmes to mitigate the emerging and increasing problem of autism, there is still an urgent need to make 'inclusive environments for children with autism' a stronger political movement. This will influence lawmakers to bring subsequent changes in the policy architecture associated with autism and its management.

Author's note: I am not a mental health expert. I have compiled all the experiences I have been through being a father of a child with lower-spectrum autism. 

Ekhtekharul Islam is a Senior Lecturer in the Department of Environmental Science and Management at Independent University, Bangladesh (IUB). He can be reached at ekhtekhar@iub.edu.bd.

Disclaimer: The views and opinions expressed in this article are those of the author and do not necessarily reflect the opinions and views of The Business Standard.