Saud Bin Ahsen |
The ninth annual World Autism Awareness Day will be observed on April 2, 2017. The term “Autism Spectrum Disorder (ASD)” is now used to describe a group of complex disorders of brain development characterized in varying degrees by difficulties in social interaction, verbal and nonverbal communication, and repetitive behaviors, commonly called Autism.
While the global statistical data of the people suffering from ASD is quite coherent, determining the exact number of people with ASD in Pakistan is difficult, as very little is known about the condition in the country. There has been no official survey and there is no official registry of people with autism in the country. In the last national population census, held in 1998, data about disability situation in Pakistan was given under seven categories. These included: crippled, mental retardation, insanity, mute, blind, deaf, and multiple disabilities. Autism was considered a form of mental retardation.
In South Asia, none of the SAARC countries has authentic official statistics regarding prevalence of autism in their respective countries.
According to 1998 census, people with disabilities formed “2.49% of the total population” of Pakistan. Civil Society Organizations contested that the census has not taken into consideration various social factors including stigma and taboos due to which many parents do not come forward to report the presence of a person with some sort of mental disability in the family. The same issue is being replicated in the current census after almost nineteen years.
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In South Asia, none of the SAARC countries has authentic official statistics regarding the prevalence of autism in their respective countries. In India, the estimated ratio of children with autism varies from 1:500 to 1:50. In Sri Lanka, the ratio is reported as 1:90. In Bangladesh and Nepal, almost similar estimated figures have been reported.
Concerns & Challenges
One of the primary challenges in Pakistan regarding ASD is the non-availability of authentic data. There is no formal system of diagnosis and reporting of autism in the country. The usual health information sources such as hospital records and health surveys etc. do not contribute much to establish the prevalence of ASD, as autism is not recognized as a separate disability.
Psychiatry is still considered a bad omen and not appreciated in the country. Parents of autistic kids are therefore reluctant to seek help from the psychiatrists.
Lack of legal Framework and public awareness, the existing laws – The Disabled Persons’ Employment and Rehabilitation Ordinance, 1981; the Mental Health Ordinance for Pakistan, 2001; the Persons with Disability Act, 2002; and the “National Plan of Action for Persons with Disabilities, (2006)” – do not mention autism as a disability.
Moreover, Lack of education and awareness of ASD at all levels of society in Pakistan is a major constraint. Autism is not extensively taught in medical schools in Pakistan. The only time doctors may be exposed to it is in their final year of studies.
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According to 1998 census, people with disabilities formed “2.49% of the total population” of Pakistan.
Even in the rare cases of timely diagnosis, proper treatment is not provided. The sufferers usually get detached from social circles. Another problem is that psychiatry is still considered a bad omen and not appreciated in the country. Parents of autistic kids are therefore reluctant to seek help from the psychiatrists.
Recommendations
It is the state’s responsibility to recognize the rights of people with autism in the country and fulfill their genuine needs. Currently, the gap between the need and delivery of services for children with ASD is too wide.
As a first step, the federal Government should commission an exclusive country-wide survey to determine the prevalence of ASD in the country or make significant column in ongoing census for such people. Likewise, widespread dissemination of Autism awareness is necessary as it requires presenting and framing the issue in a way that is relevant to all. Like in India, various movies are also made on this theme.
Furthermore, it is necessary for Pakistan to start certain programs that focus on behavioral studies, meeting the requirements of Board Certified Behavioral Analyst (BCBA). This would require a program that offers Masters in Special Education including courses that prepare and lead to the BCBA certification. Amendments should be made in national laws including in the “National Policy on the Rights of Persons with Disabilities, 2002” to declare autism as a separate category of disability because lumping ASD with mental retardation does not serve any purpose. Studies have proved that although ASD is a brain-related disorder but is not linked to the intellectual disability.
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Government should encourage formation of more parental organizations for sharing information and experiences. These organizations should have structured links with the healthcare providers and autism advocacy groups abroad.
Thus, it isn’t possible for any NGO or civil society organizations to bring all these specialists under one roof. Government should establish a National Centre for Autism with all required facilities. Government should encourage formation of more parental organizations for sharing information and experiences. These organizations should have structured links with the healthcare providers and autism advocacy groups abroad, such as “Autism Speaks” and “Autism Research Centre”.
So far, Pakistan lags behind all other countries of the region in autism awareness – in policy framework as well as in service delivery. Devolution of health and education sectors to the provinces through the 18th constitutional amendment has compounded the problem of service delivery to disabled people including persons with ASD. Notwithstanding that, it is the responsibility of the state to ensure the rights of all individuals, especially of the marginalized segment of the society and make appropriate laws and policies in order to make thousands of children with disabilities productive members of the society.
Saud Bin Ahsen is Post-Grad student of Public Administration at Institute of Administrative Sciences (IAS), University of the Punjab, Lahore. The views expressed in this article are the author’s own and do not necessarily reflect Global Village Space’s editorial policy.