Autism awareness

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BY RUKHSANA SHAH

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DAWN, Pakistan: April is the cruelest month, wrote T.S. Eliot. It is a month of painful rebirth, but also a time of immense possibilities, when each being has the chance to blossom. It is thus very aptly the month that hosts World Autism Awareness Day on April 2.

The pain of discovering that the child you have given birth to is on the autism spectrum then struggling with their condition and facing a world of critical peers, doctors, educators and government functionaries needs to be leavened by sympathy and kindness. A recent US study found that a very high percentage of mothers of autistic children suffer from severe post-traumatic stress disorder. If this is true for the world’s richest country, which provides extensive support structures, what must the travails be of women in Pakistan whose children are diagnosed with autism? First, diagnosis itself is difficult, because mothers looking for answers from doctors are often not even aware of what autism is.

And particularly in smaller cities and towns, doctors often can’t diagnose autism, let alone advise parents, as it barely factors in their medical education and very few universities concentrate on the subject.

Since the incidence of autism is growing at a phenomenal rate at home and abroad, the existing structures of knowledge, including medical curricula, need to be revised to include a thorough understanding of specific developmental disorders. Help, care and research centers for autism should be set up at all institutions where psychology, developmental pediatrics and neurology are being taught, while public and private schools must set up resource rooms and train teachers to enable these children to attend mainstream schools.

Second, autism is still not officially recognized in Pakistan. Even the National Institute of Special Education’s signboard in Islamabad continues to read as the center for “mentally retarded” children. This is despite the fact that the Capital Administration and Development Division minister inaugurated a seminar on autism awareness last year, while in 2014 the day was commemorated at President House. Many eminent persons, including the chief ministers of Punjab and Sindh, have children or grandchildren with autism, so why aren’t things changing? Not only must all disability laws be amended to include autism and other developmental disabilities, the federal government must also legislate for inclusive education as mandated by the UN Convention on the Rights of Persons with Disabilities that was ratified by Pakistan in 2011.

Third, there is no autism prevalence data available in Pakistan. In the 1998 national census, only 2.4 percent disability was reported, while the worldwide figure, according to the UN, is 15 percent. Only four categories of disability are identified and reported blind, deaf, physical disabilities and “mental retardation” and that term does not differentiate between the various intellectual and learning disabilities. So, there is no data on the burgeoning number of people with autism and related disorders, with the result that teachers and caregivers are not properly trained to deal with them, closing the door on their education and rehabilitation forever.

With a new census under way, it is imperative that the government collects relevant information on all types of disabilities among the population, as well as disaggregated data since most girls and women with disabilities remain unreported. The government should use state-of-the-art technology for enumeration and tabulation of data, including aerial photography, GPS and digitization tools.

Fourth, budgetary allocations for education, access, rehabilitation and employment of persons with disabilities are abysmally low in all the provinces. Only one percent of children with disabilities are able to attend any kind of school (less in higher education), while children and adults with autism have no future in the existing scenario.

So far, the only schools for autism have been established by parents themselves, with limited financial and human resources, while some “professionals” have set up “therapy” centers exploiting desperate parents by charging exorbitantly for dubious “treatments”.

The provincial governments must set up autism centers for early intervention, education, management and therapy in the absence of inclusive education systems.

Separate funds must be allocated not only for infrastructure, but also for continuous capacity-building and training. The existing network of doctors, psychologists, nurses, Lady Health Workers, school health and nutrition supervisors, government schools, union councils and community-based organizations must be utilized to create such facilities in at least all major cities.

And finally, residential homes and community centers must be established for adults with autism with help from the corporate sector to inculcate independent living, provide vocational training (including cooking and computer skills), and provide sheltered and assisted employment. IPS

The writer is a former federal secretary. This story was originally published by The Dawn newspaper in Pakistan

rukhsana.hassan@gmail.com

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