Autism awareness

02 Apr, 2019

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The writer is a former federal secretary.
The writer is a former federal secretary.

THIS year, the UN Observance of World Autism Awareness Day focuses on the use of assistive technologies (AT) and information and communication technologies (ICT) to enable persons with autism to live full and independent lives in line with the instrumental activities of daily living (IADL) and other measures. What do we know about these terms in Pakistan, and how much do we know even about autism?

A recent survey in Lahore by Kinnaird College students revealed that almost no students studying at the college had even heard of autism. Similar have been the results of such surveys in other academic institutions in the country. Yet autism is the fastest-growing neurological disorder in the world, with one out of 60 children being diagnosed with this condition last year. In Pakistan, very little is known about autism and other neurological disorders even among medical professionals. This factor combined with a critical shortage of trained therapists and special education teachers continues to aggravate the lives of millions of people.

Yet there is much hope for children with autism and, in fact, for all persons with disabilities in the coming years. The number of assistive, adaptive and rehabilitative devices for PWDs with physical, auditory and visual impairments is growing; prosthetics, artificial limbs, hearing aids, and Braille are becoming more sophisticated technologically, while their combinations with ICT promise an increase in communication, learning capacities and opportunities for education, independent living and employment.

According to WHO, 90 per cent of PWDs across the world have no access to AT devices. Poor countries suffer the most because these are not easily available or even usable due to lack of affordability, awareness and low literacy. The vast implications of the UN secretary general’s strategy on new technologies as key components of government policies towards achieving the SDGs have yet to be understood by many governments.

One out of 60 children is diagnosed with this condition.

For example, the ‘digital divide’— inequalities between communities with and without affordable access to ICT — is a big question that needs to be addressed as many countries are burdened with poverty, illiteracy and basic healthcare issues, without trained medical manpower even at the primary and intermediary levels. Hence, the recent strides in telecare, telemedicine, AI, biotechnology and robotics seem so far to be geared to benefit a very small portion of the global population, given the immense economic disequilibrium among UN member states.

Last year, Pakistan tabled a motion at the World Health Assembly on this subject, which was followed by a resolution urging all member states to devise policies and programmes to ensure the provision of AT and ICT to their populations in the next four years. Despite this diplomatic success, much is missing in relation to the rights of PWDs at home. The 2017 census failed to collect even the most basic data on disabilities in the country, while their inclusion in education, employment and socioeconomic and political participation as mandated by the CRPD is a distant dream, despite the enabling Sindh Act of 2018. Even the Accessibility Code of 2006 remains unimplemented despite many interventions by the Superior Courts.

Children with autism struggle in mainstream schools because the curricula are not adapted to their needs, while in special schools, they regress as there are no specific therapies available to them. The absence of clarity regarding inclusive education, training, human resource development and budgetary allocations impact not only the livelihood, health and quality of life of PWDs, their families and communities, but also have far-reaching consequences for the country’s social and economic ranking. We are already second but last in the global human development and gender equality indices, our literacy levels are among the lowest in the world, while our maternal and infant mortality rates continue to be the worst in the region.

Unqualified and unconditional inclusion is the litmus test of tolerance and humanity in any civilisation. It is time that the government enacts fresh legislation in accordance with the CRPD mandate and announces clear policies to enable inclusion of PWDs in society. A list of affordable assistive products meeting quality, safety and technical standards needs to be prepared, while the production of these devices should be incentivised by the government.

In the context of autism, the development of augmentative and alternative communication devices, mobile apps, smart schools and sensory-friendly homes need more attention by the software industry. While the private sector must come forward in this respect, the HEC should promote research in ICT and AT in the special education curricula to facilitate teachers and practitioners.

The writer is a former federal secretary.

Published in Dawn, April 2nd, 2019