Autism treatment Dhaka-centric
Every time five-year-old Ariyan goes outside home, his grandfather Razu Ahmed accompanies him and holds his hands tightly fearing that something might trigger his recently-developed erratic behaviour.
On Sunday, Razu brought him to Bangabandhu Sheikh Mujib Medical University (BSMMU) to consult a doctor. They reached the hospital from Dhaka's Nababganj upazila around 3:00pm, two hours after the visiting hours for outpatients ended.
''We couldn't see the doctor, but we got the visiting card of his private chamber. Now we have to go home and come again after getting an appointment," he told The Daily Star.
''Aryan has been a little too naughty since childhood. But at the early stage, he had no other problems. Four months ago, he started behaving incoherently. As there is no doctor to treat such children in our upazila health complex, we came to Dhaka."
Like Razu, guardians of many other children were seen returning home from the Institute for Paediatric Neurodisorder and Autism (IPNA) at BSMMU without receiving treatment due to high pressure of patients.
IPNA is a government initiative to establish a nationwide paediatric neurodevelopment and autism-related management, training, and research institutes.
On an average day, 250 to 300 autistic children visit the institute with various neurodevelopment issues. Of them, some 130 children can be served, and the rest have to come back at later dates, said Muzharul Mannan, a neurologist at IPNA.
In 2022, as many as 14,142 children were treated as new patients at the IPNA outdoor. Another 11,942 came for follow-ups.
''With the manpower we have, we can attend about 70 children daily. But we serve some 130 children a day. Many come from outside Dhaka. We try not to send them back, but every day 100 to 150 children have to go back,'' Muzharul told The Daily Star.
Physicians and experts say both public and private treatment facilities for treatment of behavioural disorder, often called autism, are mostly Dhaka-centric. As a result, parents have to either come to the capital or leave their children untreated.
A BBS survey titled National Survey of Persons with Disabilities of 2022 also found that access to autism treatment is higher in urban areas than in rural areas.
Autism Spectrum Disorder (ASD) is a development disorder that includes deficits in social communication and interaction, presence of restricted and repetitive behaviours or activities that can persist throughout life.
Signs of ASD are typically detected in early childhood, with boys four to five times more frequently diagnosed with ASD than girls, Muzharul said.
To improve the quality of life with those having autism, the UN observes April 2 as World Autism Awareness Day. The day is being observed globally since 2008.
This year, nations around the world, including Bangladesh, is marking the day with the theme of awareness on autism and acceptance and appreciation of those having neurodevelopment issues.
Bangladesh has two specific laws -- Rights and Protection of Persons with Disabilities Act 2013 and Neuro Developmental Disability Protection Trust Act 2013 -- to help protect their rights and ensure their safety.
But the country does not yet have the capacity to provide optimal treatment and support those suffering from autism, especially in terms of having enough treatment centres in rural areas that specialise in treating autism, according to experts.
At the moment, only 34 district hospitals have very basic facilities, equipped with one child specialist, one psychologist and one therapist, to treat such children, experts say.
''Many children are left undiagnosed, especially in rural areas, due to ignorance on the part of their families. Abnormalities in neurodevelopment are brushed off as slow learning or attributed to physical illnesses. Additionally, a great number of patients with Down Syndrome -- a genetic disorder which is wholly different from ASD -- are misdiagnosed with autism spectrum disorder," said Muzharul.
Prevalence of ASD has been increasing worldwide. It has been reported to be as high as 168 per 10,000 in the US, according to a 2014 study titled "Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years.''
Another study titled "Autism Spectrum Disorder (ASD) in South Asia: a systematic review" published in 17 found the overall prevalence of 36 per 10,000 with higher prevalence in East Asia than in West Asia (51 and 35 per 10,000 respectively).
Bangladesh has very little data on how many children or adults suffer from ASD or any life-long neurodevelopment problems. However, some scattered research and surveys have been done on autism.
According to an IPNA study report published in 2017 and reviewed in 2022, at least 17 per 10,000 babies in the country have confirmed Autism Spectrum Disorder. In other words, 1 out of every 589 young children have ASD.
The results of the research titled "Nation-wide Survey on Young Children with Autism Spectrum Disorder in Bangladesh 2017" were based on a survey on 37,982 households in 30 districts across the country having 38,440 children aged between 16 and 30 months.
What causes autism remains mostly unknown, but the survey found some links between ASD and various maternal illness, including hypertension, diabetes, asthma, fever with rash and urinary tract infections during pregnancy.
"Compared to other South Asian countries, it is possible that a larger number of the population in Bangladesh is suffering from Autism Spectrum Disorder. The stigmatisation and discrimination associated with the illness continue to remain substantial obstacles to diagnosis and treatment of autism," said Muzharul.
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