Girls with autism

Apr 02 2018

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ON April 2, 2018, the UN will be observing the 11th World Autism Awareness Day, focusing for the first time on women and girls with autism, and opening up a much-needed debate on fresh policy initiatives to ensure that women and girls with disabilities are able to exercise their rights as per the Convention on the Rights of Persons with Disabilities, particularly in matters relating to marriage, family and parenthood as per Article 23 of the CRPD.

In a country like Pakistan where disability is still viewed as a curse and stigma, girls face triple discrimination on the basis of gender, disability and poverty. Parents of girls with autism in particular face insurmountable challenges as there is hardly any awareness about autism among policymakers in the country, and even doctors and teachers in big cities are not equipped to guide parents on autism.

Autism is a neurological disability that affects information processing, social interaction and communication skills. Persons with autism demonstrate a lack of understanding of the outside world and express their inability to cope with it through rigid routines, aggression and, sometimes, self-harm. However, they have different ways of learning and unique special interests that can be nurtured through early therapeutic interventions. Many can be educated and trained to cope independently with their disability.

Pakistanis on the spectrum have little to no state support.

Autism is less prevalent in girls compared to boys, with the ratio being one girl to four boys with autism. According to the US Centre for Disease Control and Prevention, one out of 68 American children suffered from autism in 2013. In the absence of any prevalence data in Pakistan, this indicator may be used to assess the number of Pakistanis with autism. Thus, according to the 2017 census, with 55 per cent of the population being under the age of 19, there may well be at least 1,700,000 children with autism spectrum disorders in Pakistan, with girls accounting for 340,000 of this number.

The stigma attached to neurological disorders is a substantial obstacle in seeking diagnosis and treatment. In many small towns and villages of Pakistan, girls with autism are often kept in chains by their parents due to their sensory issues, poor social communication and sometimes seemingly bizarre behaviours. Superstition and fear, coupled with illiteracy and lack of awareness, perpetuate cruelty and violence against them.

As girls with disabilities grow older, parents worry about their future after their caregivers pass away. They are most likely to be abused or exploited, killed over property disputes or sold into slavery or prostitution. In this dire scenario, it is imperative that the government takes several important steps to ensure security and safe living spaces for them, along with vocational training and employment opportunities.

Firstly, a policy framework needs to be put in place by the government on the pattern of the National Policy for Disability, 2002. This policy and the subsequent National Action Plan on Disability were not implemented because of the usual lack of political will. After the 18th Amendment, there has emerged a serious theoretical gap in minimum standards and national benchmarking of health services, educational facilities and respite care for persons with disabilities for the provinces to follow, especially in relation to women and girls.

The National Commission for Human Rights (NCHR) is the country’s highest governing body for guaranteeing fundamental rights as mandated by the Constitution as well as international conventions Pakistan has ratified. It is the only institution now that can develop a national policy framework with a holistic approach towards disability rights, invol­ving other federal and provincial ins­ti­­tutions such as

the police, health, education and so­­cial welfare depar­t­ments to implement structured support programmes.

The NCHR will need to revive organisations such as the National Disability Trust to provide funding for new initiatives such as autism awareness campaigns, teacher training and curricula modification in government schools, therapeutic interventions and respite care alternatives. The NCHR could also push for legislation on inclusive education, safety of children in their homes, and community support centres under local governments, so that persons with disabilities can be mainstreamed and protected.

The government must also support initiatives of parents and NGOs in setting up schools and short-term respite group homes. Last year, Action For Autism in India set up a respite home named Ananda for persons with developmental disabilities in Delhi based on the Leonard Cheshire model in the UK. In Pakistan, initiatives such as the Roshni Gaon outside Lahore, modelled on the Waldorf system of curative education, and the Fountain House, based on a similar initiative in New York, are dying due to lack of technical support and funding by the government.

The writer is a former federal secretary.

Published in Dawn, April 2nd, 2018