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Autism & Neurodiversity
ON World Autism Awareness Day tomorrow, the focus should be on some interesting developments. First is the groundbreaking book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman that places autism at the heart of the neurodiversity movement, which is based on the premise that atypical neurological development is a normal and natural variation of typical neurological development, and therefore persons with autism should not be perceived as being deficient but valued for their different ways of processing information.
Neurodiversity celebrates this ‘difference’ and suggests “the existence of different computer programmes” in these individuals which we do not understand yet.
Silberman’s book traces the history of autism, when people were diagnosed as schizophrenic, incarcerated in institutions and administered psychotic drugs and electric shocks, to Dr Kanner’s explanation in 1943 of infantile autism as a result of cold, unresponsive and ‘refrigerated’ mothers. During the same period, Dr Asperger identified persons with autistic traits as “worth saving” because many of them were highly intelligent and had the potential to excel in certain fields.
This implied, according to Dr Lorna Wing, that autism could manifest itself at different levels in a spectrum — severe, mild and high-functioning, including Asperger’s — accommodating within it geniuses like Newton, Einstein, Dirac, Cavendish and many others.
Pakistani doctors know little about autism.
The second important development is that there is a staggering increase in the number of persons being diagnosed with the autism spectrum disorders (ASD) throughout the world: the Centres for Disease Control and Prevention estimate the number at one in 68 children while a US police training documentary quotes the figure of one in 50. Recently, CNN reported that one out of 38 children could be on the spectrum in South Korea.
While improved diagnostic facilities are a reason for this increase, other factors, apart from genetics and DNA mutations, are being cited that contradict the neurodiversity argument, such as the increased use of electronics and IT, environmental hazards, and the presence of mercury in vaccines.
Thirdly, Hewlett-Packard in Australia has recently started employing young adults with autism to develop and run software programmes for the company. Due to this emerging autism-compatible environment, a growing number of persons with autism are now finding employment in banks, computer companies and restaurants in many countries.
Unfortunately, in Pakistan, autism is not recognised either as a specific disorder or an atypical neurological trajectory, and autistic individuals are categorised as ‘mentally retarded’ as per the last census of 1998. Developmental disorders are not mentioned in the Mental Health Ordinance 2001, nor in the National Trust for the Disabled. On the other hand, the Indian National Trust Act 1999 specifically mentions “Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities”. India is further increasing the number of recognised disabilities from seven to 19, while in Pakistan, there are only four categories in the Disability Acts of 1981, 2012 (Punjab) and 2014 (Sindh) — visual and hearing impairments, physical disabilities and mental retardation.
Correct classifications are crucial to the planning, budgeting and provision of services. These gaps in nomenclature need to be filled immediately by the centre through fresh legislation along with the reinstatement of the National Trust under the Cabinet Division. Secondly, the curricula of universities and medical institutions needs to be modified to include specific developmental disorders as most Pakistani psychologists, special educationists and doctors know little about autism. There are no prevalence rates available, nor are carers trained in remedial intervention programmes.
Persons with ASD are more misdiagnosed, misunderstood and abused than any other group in Pakistan. In a research paper published in the International Journal of Mental Health Systems 2014, it was reported that in Mandra, district Rawalpindi, “Behavioural and social problems caused the most stress to parents, particularly challenging behaviours ... Some behaviours were self-destructive, such as hitting and biting oneself”. These could be signs of an autism diagnosis, but it was reported that doctors were unaware and routinely advised parents to pray.
The centre and provinces must implement new programmes, using the existing infrastructure of doctors, nurses, LHWs and school health and nutrition supervisors to empower local communities through awareness, education, rehabilitation, and social acceptance of persons with disabilities in general and autistic individuals in particular.
The government must also enact laws in line with the UN Convention on the Rights of Persons with Disabilities for their inclusion and employment in all spheres of life. However, the political will is missing as the only National Consultative Seminar on Implementation of UNCRPD was held in June 2012.
The writer is a former federal secretary.
Published in Dawn, April 1st, 2016