The word "autism" is derived from two Greek words. The prefix of the word "aut" comes from the Greek word "autós", meaning self, and the suffix "ism" comes from another Greek word "ismos", which implies a state of being.
People with Autism Spectrum Disorders (ASD) exhibit restricted interests or patterns of thoughts and difficulties in several functions involving impaired social interactions, verbal or non-verbal communication, and repetitive or inflexible behaviours.
The prevalence of autism had risen substantially since the diagnosis was first introduced in 1943 when Dr Leo Kanner first coined the term "early infantile autism" after observing 11 children with seemingly similar social withdrawal or isolated personality.
It is estimated that ASD, on average, affects 1 in 160 children worldwide (Autism Research, 2012). About 1 per cent of the world population has Autism Spectrum Disorder (CDC, 2014), although statistics vary across studies since the definition and diagnostic criteria of ASD has evolved drastically over time.
Mamataz Begum, who's been working with children with ASD since 1997, is among the first few to work for children with ASD in Bangladesh and is currently working as an Autism Instructor at the Institute for Paediatric Neuro disorder and Autism, Bangabandhu Sheikh Mujib Medical University Hospital, Bangladesh's first government-initiated autism school.
We talked to her about the treatment of autistic children in different aspects of our society.
Home is the primary place where the exceptional qualities of people with ASD need to be cherished, and their blue world needs to be nurtured. An ASD diagnosis can be frightening for the family. ASD takes its toll on families mentally, socially and economically. However, the family can help them overcome a wide variety of developmental adversities.
Since there is no medical detection for autism, screening the child's developmental delay and early identification of areas of need for intervention can increase the chance for their improvement and deliver benefits across their lifespan. It is essential to consult autism specialists if one or more autism symptoms become apparent to suggest the correct treatment based on the child's needs.
Parents want their child's condition to improve as early as possible, but the improvement requires tremendous patience, emotional attention and empathic efforts.
"We need to adhere to certain systematic programmes to ensure quality rights to the children with special needs. Many parents, unfortunately, are not aware of this and hence, sometimes, it becomes difficult for us to explain the necessity of various methodical programmes to them. When we diagnose the children, we provide necessary instructions through follow-up sessions for the child, in which parents play major roles.," said Mamataz.
"The autism management or behavioural modification therapies are evidence-based programmes, which helps children on the autism spectrum in the long term. We even guide the appointed caregivers with hands-on programmes which aid them in the long term. The behaviour of a child can be changed through behaviour. Hence, we reinforce and reward them for the good behaviours that we want them to possess. We mainly highlight the positive sides of their behaviour more, instead of focusing on the errors," she added.
Educational institution, be it regular or specialised, is where children with ASD get the first chance to step into the outside world and interact with people apart from their family members. Therefore, we must ensure welcoming educational spaces for them.
Adults need to make better judgements and create a safe zone for all children where they can receive the love they deserve. According to Mamataz Begum, mainstream educational facilities are generally recommended for students on a mild level (early stage) or around age 4-9. Meanwhile, professional or trained care is preferred for students who are above 10/12 years old.
However, their peers might need a little assistance from the teachers and guardians to get used to the behaviours they are encountering for the first time. Teachers and guardians can counsel their peers to help them understand the power of their words or actions and the impact one random incident of bullying can have on another.
The understanding level of autistic children is satisfactory. What they, however, struggle with is their expressive level. Hence mistreatment can make them aggressive, which can be averted through the support of their surroundings. Just admitting them to regular schools will not make everything normal. Societal support is necessary for them, along with the family's care.
The professional sectors can be supportive of them too. People with ASD can be part of the workforce with their unique strengths. The guardians can determine their child's interests, proficiencies, and abilities to help them choose a suitable profession onwards.
"Every person inherently has certain capabilities. The same goes for people with ASD. The shift in mindset through various governmental and non-governmental initiatives can help them attain jobs that they can easily perform, where they can make contributions to the world. Just like everyone else, they too should be provided with jobs according to their capabilities," Mamataz Begum asserted.
The wide range of skills they might demonstrate varies from person to person, depending on their distinctive individualities. However, creativity, curiosity, an urge to learn more, keen attention to details, acquisition of knowledge through objective research and accurate visual orientation are common among people with ASD.
People with ASD having successful careers is not a speculated notion. It has been proved numerous times in history. We need to support them from right at the hiring process, which is maintained throughout their working period. Such support is expected of the employers as well as their co-workers so that they can maximise their uniqueness.
Companies need to adopt policies that ensure comfortable working environments where they can blossom well. They can offer in-office childcare facilities for parents. They can also arrange theme-based programmes for regular awareness sessions.
Although people with ASD often find it difficult to adjust to the conventional workplace model, technology is proving to be helping them in the work field. Remote working is now seamless due to the boom of technological advancements. It lessens the dependence on non-verbal communication cues or constant social contact, making interaction easier for people on the autism spectrum as they harbour unique sets of communication style.
Moreover, remote working tools allow neurodivergent workers to work from places of their choice. These give them a true sense of comfort, helping them efficiently work with neurotypical workers. This new employment market promotes neurodiversity as digitally-enabled collaboration opens up many possibilities, where every worker gets fair and equal opportunities.
People with ASD might be disturbed by the overload of sensory information. These overwhelming inputs can lead to sudden meltdowns, and they might end up doing something inappropriate in public, as perhaps they found the situation hard to cope with. To cap it all, inconsiderate reaction or the lack of support can make the situation worse. Let them be; more often than not, this is what they need from you.
"Parents might find themselves in awkward situations, even though there is nothing to be embarrassed about in the first place. Parents know what they are doing. People can just follow through and be ready to help them as they are trying their best to take care of the child. Also, the key is not to try to conceal autism. The more we involve them in our conversations, the more we will be able to celebrate diversity. If we keep on hiding, the scenario will not get better, as others' mentality will not change," said Mamataz Begum.
Meherunnesa Laboni, the mother of an autistic child, remarked, "I think in this age, even neurotypical children find it hard to go around in the world. The struggle becomes even more morbid for children with ASD. It was terrifying for us when our child was diagnosed with autism. It was hard for me to accept the reality as well. But now I know better because now I see how my child is better than those who intentionally wrong others. What worries me is the lack of social acceptance that still exists. We need changes for an inclusive-appreciating culture, where people become more understanding of the differences and willing to embrace them. We need to educate ourselves to equip ourselves with correct information to make the world a kinder place for all."