Daily Times

April 2, each year is observed around the world as World Autism Awareness Day. The purpose of observing this day is to raise awareness about Autism and highlight the challenges faced by people with autism and their families.

Like any other country in the world, autism is widely prevalent in Pakistan. There is, however, no official figure as there has never been a survey of people with autism. Civil society organizations estimate the number of people with autism in the country to be between 400,000 to 500,00. These estimates, however, are not substantiated by any scientific survey. World Health Organization estimates that one in every 160 children in the world is suffering from autism. If this formula is applied to Pakistan, the number of children with autism in the country would be around one million, and the number would be growing every year.

Besides, there are many adults with autism. A study conducted by the Armed Forces Institute of Mental Health, Rawalpindi found that out of 1889 adult patients reporting for psychiatric evaluation and treatment at a tertiary mental health hospital screened 12.5% were positive on AQ and 8.6 % of the screening positive patients had diagnosis of ASD.

The question arises as why a pandemic of such magnitude in Pakistan is then hidden from the public eyes. There are multiple reasons. First, there is no official figure of people with autism in Pakistan as it is not officially recognized as a separate disability, nor a separate survey has ever undertaken. In the general population census, five categories of disabilities namely blind, deaf/mute, crippled, insane and mental illness are recognized, and autism is included in the category of mental illness. According to national census of 2017, the total number of all disabled persons in Pakistan including autism was less than a million, making it only 0.48% of the total population. Whereas, the number of the disabled people as per the previous census conducted in 1998 was 3.2 million or 2.3% of the total population. The 2017 census figure is therefore contested by many civil society organizations.

Lack of education is another reason of lack of awareness about autism. Lack of education leads to stigmatization, which becomes a serious barrier to early diagnosis and effective treatment

Lack of education is another reason of lack of awareness about autism. Lack of education leads to stigmatization, which becomes a serious barrier to early diagnosis and effective treatment. Sometimes, families try to keep their children with autism hidden from their relatives and neighbors, because of the fear of being labelled and seen as having a defective lineage that can threaten the marriage prospects of their unaffected relatives. In many parts of the country, psychiatry is considered a bad omen and not appreciated. Parents of autistic kids are therefore reluctant to seek help form the psychiatrist. At times, doctors and specialists themselves are reluctant to make the diagnosis because of the fear that the parent may label the child as mentally retarded and taken to religious healers for spiritual treatment.

Another major reason of not diagnosing autism is the tendency of ignoring by parents many cases of development delays, and learning difficulties thinking that it will go away when the child grows. With the result, many cases of classic and high functioning autism (level 1&2) remains undiagnosed or misdiagnosed with other related disorders such as ADHD, learning difficulty etc.

Misdiagnosing of autism is another major issue in Pakistan. The process of diagnosis and treatment of children with autism involves several health professionals including pediatricians, psychologists, neurologists, psychiatrists and speech & language therapists. Most of these health professionals in Pakistan have little or no formal training in child psychiatry and ASD. Resultantly, many children with autism symptoms are misdiagnosed as speech disorder, learning disability or ADHD. Parents of these children also end up paying hefty amounts to health professionals for administering wrong treatments.

Finally, non-existence of a formal system of diagnosis and reporting of autism is yet another major problem in Pakistan. A simple screening and diagnosis process involve several professionals starting from the family pediatrician. In the first instance, majority of the pediatrician and other health officials are unfamiliar with the symptoms of ASD. Then there is no system of referral to the next specialist in the chain. There are a limited number of hospitals that are equipped with professionals and resources for initial assessment and diagnosis of ASD.

Those formally diagnosed as autism face another set of challenges. When diagnosis occur, there is a lack of an appropriate, clear, and definitive referral system. Even if the referrals for medical care take place, there is no referral system for therapeutic care. There is a dearth of qualified healthcare providers, therapists, as well as teachers and caregivers, who have the knowledge and training to support families and children with ASD. This results in services being provided by untrained/unqualified individuals. Costs associated with treatment, doctor visits, medication, and transportation for children with autism are yet another major challenge for families, as these are very expensive, which is made more challenging by the socio-economic circumstances in which many of these families live. In addition, a lack of government provision of speech and occupational therapy, the high costs of attending school for children with ASD, and the limited availability and high cost of parent training programs contribute to the financial challenges.

To address these problems, government of Pakistan must, at the first place, accept autism as a separate disorder. It should be followed by a national level survey to collect data on the number of people with autism in the country. To provide diagnostic facilities, therapies and training to parents and specialists of autistic people, government should establish “Autism Centers of Excellence” in all districts, in collaboration with provincial governments.  To prepare young doctors for autism diagnosis, Autism should be included in the MBBS curriculum. Similarly, autism subject should also be included as a separate subject in the curriculum of nursing and other paramedical staff courses.  Special schools for autism should be established across the country for the education of autistic children. Similarly, autism classes should be started in mainstream public schools. Training of experts, in applied behavioral therapy, occupational therapy, speech therapy, and developmental and rehabilitation therapies may be undertaken and posted in all special education schools. In addition, the government should set up a specialized training program for autistic people to provide a variety of services. Similarly, public, and educational campaigns should be launched, in collaboration with the civil society organizations, media, professional associations and private trusts. Above all, autism needs to be taken seriously as it is devastating the lives of many young and adults. We need to act and act fast, as every day wasted is ruining the lives of many people.

The writer is Pakistan’s Ambassador to Indonesia and a proactive member of Autism awareness campaign in Pakistan. His latest publication “Autism ke Pekli Kitab” is under publication.?