With World Autism Awareness Day celebrated on Thursday, Namira Hossain reveals how initiatives by parents of autistic children are bringing about significant changes in the lives of these innocents
As a society, we often preach about equality and tolerance, but the truth is that we are often too quick to condemn and marginalise those who are a bit different or we remain apathetic and often ignorant to their plight.
Last year in September 2014, Saima Wazed Hossain, daughter of Prime Minister Sheikh Hasina won an award from World Health Organisation for Public Health for her contributions to the fight against neurodevelopmental disorder and autism. Even though, she has been lauded for her work in this field by WHO as having made ‘path-breaking role on autism at national, regional and global level to ensure there is a national policy and commitment for the autistic children’, there is still a huge need for awareness on a social level regarding the condition.
It is estimated by the Ministry of Social Welfare that the total number of persons with ASDs (Autism Spectrum Disorders), could be as high as 1.4 million – of whom only a few hundred have been diagnosed. One estimation is also that one child in 500 in Bangladesh has autism, meaning that the approximate number of children with ASDs in Bangladesh is no less than 280,000. The general attitude towards autism is mostly negative and it is seen as a social barrier.
‘Your child is crazy. There is nothing you can do with such a child, he has no future,’ is what Nusrat Khan, the mother of an autistic young boy, Zarif, was told by a doctor when he was three years old. And therein is the biggest problem in our world: a fear and vilification of that, which is different or unknown, and a basic lack of compassion.
Thankfully, all is not bleak as he is now 18 and progressing at a decent rate, after a setback when he had an epileptic seizure when he was seven years old. Zarif has been learning to cope with the rigours of everyday life at the school founded by six parents of children with ASDs who formed the Society for the Welfare of Autistic Children (SWAC) in Shyamoli.
All 120 students in the school have ASDs and fall under the wide spectrum recognized as autism. The school follows a curriculum that is best suited to each child’s needs according to an Individual Education Plan (IEP) using traditional methodologies such as Sensory Therapy and Applied Behavioral Analysis. The teachers are all trained by trainers from the Finnish Association of Autism and Asberger’s Syndrome (FAAAS).
Many parents of ‘special needs’ children still fear to take their children out in public due to the negative reactions they may illicit, which can be very psychologically damaging to any child, especially one with special needs.
‘It does make me sad that I cannot take my son out to the grocery store or to eat at a restaurant as people react very negatively,’ says Khan. Others believe that it would be damaging to their reputation for people to know that their child is autistic, which is simply a result of the lack of understanding of what autism and ASDs is as a neurological developmental order. It simply goes to show that mainstream schools need to take steps towards an all inclusive environment and that parents of ‘normal’ children have a responsibility towards their children to teach them tolerance.
What maybe regarded as the tantrum of a spoilt child is not so simple for those who live with this condition. Autism and Autism Spectrum Disorder (ASD) is a neurological developmental disorder characterised by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviours.
‘People think that those who are autistic are unemotional and cannot feel love, that’s completely untrue. They feel and understand everything, probably even much more than us, they just do not know how to show,’ says Khan.
‘The other day, one of the teachers at his school with whom Zarif is extremely close, touched his hands and Zarif felt an electric shock. The teacher then joked that he can no longer play with Zarif, as he got shocked. Zarif took this joke to heart as he is very attached to the teacher and he had tears streaming down his face. So no, autistic children are very much capable of love, and it’s moments like that which give us parents a reason to keep hoping and going through all the trying moments,’ adds Khan.
Those who are autistic are often highly sensitive to any form of sensory stimulation, as the filtering mechanism in their brain works in a different way while assimilating the senses of touch, smell, hearing and taste – in some cases being totally unresponsive to things such as extreme heat or cold and in some cases being extra sensitive to certain sensory experiences such as the sound of a certain frequency which others would not even notice but would sound extremely loud and disturbing to them, known as sensory overload.
‘Imagine the sound of a dripping faucet sounding like a beating drum next to your ear, or the sound of a vibrating phone to be like a 100 angry bees buzzing in your head. What’s worse is imagining that you cannot communicate your discomfort to anybody else. No one understands you and thinks you are crazy,’ says Mahenaz Chowdhury, 28, Founder and CEO of Buckets Engineer.
According to the Facebook page of this start-up, Buckets Engineer is ‘a process that aims to bring a holistic change to the way education is delivered to autistic children. This process will be driven by a computer-aided platform that host applications designed for autistic children skills development’.
‘We hope to empower the parents through using this process, so they can easily map out and track their child’s expected developmental milestones. Often people think, “some children talk later than others, or some children walk later than others”. Or they think it’s okay if the child does not make eye contact or respond to their names by a certain age. No, that is a sign that they need to be aware of so they can give the proper medical attention and care that their child specifically needs through “Early Intervention”,’ says Mahenaz Chowdhury. It is not available yet in the market, but will be made available in sometime this year.
‘Early intervention is the best hope for the future for any child with ASDs,’ says Nusrat Mirza, an UK resident and the mother of 21 year old twins, one of whom has ASDs. She goes on to add ‘that and raising awareness, we still do not know what causes it.’
She stresses, ‘Lot more research needs to be done and the government needs to play a bigger role. It should be noted that most steps taken in this field have been through the parents’ initiative, not just here but even in the USA and UK. It is not surprising because no one can ever understand what we go through everyday’.
While speaking during a seminar at the Bangabandhu International Conference Centre on April 2, Prime Minister Sheikh Hasina urged all to inspire the hidden talents of autistic children into becoming national resources. She informed all at the seminar how the government has set up a trust to nurture autistic children.
An official from the National Autism Development Centre informed New Age Xtra that a research centre has been running in Mirpur since 2010. ‘Also, a government-funded free school for children with autism and ASDs was founded in 2014,’ she said.