Putul for new autism approach

Saima Hossain Putul, who spearheads autism campaign in Bangladesh, has called upon the South Asian countries to understand the magnitude of neurodevelopment disorders and design ‘culturally sensitive and economically feasible’ evidence-based interventions.

She made the call as she observed South Asian countries were yet to ensure services to the children with autism, despite progresses in diagnosing the disorders.
 

“We may not know what causes autism but that is no reason why those affected by it are denied the opportunity to realise their full potential,” Putul, daughter of Prime Minister Sheikh Hasina, bemoaned while speaking at the inauguration of South Asian Autism Network’s (SAAN) in New Delhi Monday.

She also called upon the countries to create new legislation, policies and procedures appropriate for the South Asian context ‘to promote, protect and realise’ human rights of the people with autism.

India’s ruling Congress Party Chief Sonia Gandhi also spoke at the inauguration and called for the urgent need to improve policy on autism.

The neurodevelopment disorder received global attention in recent years when study indicated that millions of children worldwide were suffering the problem in silence, without much of an understanding about it.

The network of eight countries, SAAN, was formed during the first-ever regional conference on autism in Dhaka in July 2011 for better regional partnership on the disorder.

Putul, who is the Chairperson of Bangladesh’s National Advisory Committee on Autism and Neuro-developmental Disorders, and Global Autism Public Health Initiative– Bangladesh, also lamented lack of available statistics in the region to understand the magnitude of the disorder.

“In US autism is being diagnosed in 1 out of 88 children while in South Korea the rate is 1 in every 38 children in the school age. The costs incurred for an individual (in US) with autism across the lifespan is $ 2.4 million.

“Unfortunately, we have no data in our region to verify the extent of the problem. We also do not know what the resulting cost is to our society,” she said.

But analysing the global trend, she said “we can consider it to be a significant public health challenge”.

“But families in South Asia region, particularly those who are living in poverty have neither hope nor opportunity for accessing services unless and until we incorporate these programs within our existing government system.”

The US-licensed psychologist said in the past decade progress had been made in the development of diagnosing tools, but “unfortunately, there has not been a corresponding scaling up of services to meet the needs of children and families.”

She said most services available in this region were ‘urban based and parent driven.’

“…therefore not available to those living in rural and remote areas or those in situations of poverty,” she said.

She said when she began her education in psychology 20 years ago, autism or pervasive developmental disorder was considered ‘a low prevalence disability.’

“Today autism is a global public health crisis, to the extent that the UN was compelled to unanimously ratify two resolutions in its General Assembly in order to address the needs of the autism community,” she said

The first resolution endorsed Apr 2 as World Autism Awareness Day. The second resolution ratified Dec 12, 2012 calls to address the socioeconomic challenges faced by individuals, families and societies.

Citing Bangladesh’s experiences, she told the regional forum that the approach has to be “multi-faceted, comprehensive and integrated with other community based- programs.”

She suggested some steps that have to be taken “to ensure that those with developmental disorders are seamlessly included in all aspects of society.”

“There has to be inter-agency cooperation and collaboration, in order to develop early detection programs and intervention services which are incorporated within the existing health, educational and social support systems.

“We urgently need to remove the stigma that is associated with disabilities in general and neurodevelopment disorders specifically, and empower parents so that they can be partners in the treatment process and informed advocates for their loved ones.
 

“Targeted awareness campaigns for both the general public and professionals need to be carried out at the national level including in regular primary and secondary schools.

“Higher education institutions need to be encouraged and given incentives to address the significant shortage of trained professionals who can meet the behavioral, communication and educational needs of persons with autism.”

She also called upon countries to invest in research and training of clinical professionals in the latest diagnostic and treatment tools.

“We all need to work together to establish, promote, and ensure quality-based services and evidence-based practices that are appropriate given our shared limitations of resources and similar cultural backgrounds,” she said.

Autism is a developmental disorder that appears in the first three years of life and affects the brain's normal development of social and communication skills.

They cannot pick up self-care tasks – dressing, self-feeding, using toilet and others – by watching and imitating and do not make eye-to-eye contact and have single-track thought process, doctors say.