Pakistan does not have a single teacher training program or school for autistic children, despite having around 400,000 children suffering from Autism Spectrum Disorder (ASD).
The province of Sindh has the lead in this regard with the largest autistic rehabilitation centers, however, it still lacks when it comes to teacher training.
Irum Rizwan, the chief autism consultant at C-ARTS, the largest Autism Rehabilitation Centre in South Asia, while talking to Minute Mirror said, “First of all, we have to understand that autism is not a disease, it is a condition which can be managed through different sets of treatments.”
In Sindh, there is an institute where walk-in check-ups are available for autistic children.
“According to the vision of the chief minister, we have set Autism as our priority. In Pakistan, there are many issues, one being the lack of authentic data. From my experience in the government sector, I can tell you the incidence of cases is very high,” said Rizwan.
Dr. Ahsan Nazeer, who is certified in psychiatry and child & adolescent psychiatry and is currently working at Sidra Medicine in Doha said, “The number of autistic children varies in different countries according to World Health Organization. One out of 160 children has autism on average, with other countries having more or less the same numbers. For example, according to some studies, in the United States, one out of 54 children is declared to be autistic. In Doha, there are 1 out of 58, but sadly in Pakistan, no such study has ever been conducted.”
Though data on this disorder lacks, the Pakistan Autism Society puts the figure of children suffering from ASD at almost 400,000.
Pakistan Autism Society President Major General (Maj. Gen.) Retired (R) Suhaib Ahmed, while talking to Minute Mirror said, “According to the increment in the numbers of the patients coming to us and other hospitals, almost 400,000 children in Pakistan right now have ASD. But we do not have a proper setup for collecting the data and maintain it.”
Meanwhile, In Punjab, the largest facility for autistic children is the Department of Psychiatry and Behavioral Sciences at King Edward Medical University, Mayo hospital; which is one of Asia’s largest hospitals.
Professor Dr. Nazish Imran, currently working as head of the Department of Child & Family Psychiatry Department at Mayo hospital said, “Our biggest flaw is that we are not able to keep the data of these children. In the Children’s Hospital, there is also a facility, but I am not sure that they are keeping the data on how many patients we regularly see. But on average we daily see 30-40 new patients.”
Keeping the track of patients is not the only problem. There exists a lack of awareness about this condition, along with specialized institutes for its diagnosis and treatment.
Moreover, parents who are not able to get full information about their child’s condition are forced to pay a hefty amount as a fee despite getting no results.
“In Pakistan, the expertise of people working with individuals with autism is very limited, owing to the lack of opportunities to pursue such a degree in educational institutions. If universities were to start offering degrees and diplomas related to the management of the condition, we could see an upshot in the number of qualified individuals present,” stated Dr. Rizwan.
She added, “Due to the express need for rehabilitation institutions, many centers are springing up but unfortunately, a majority of them are unable to provide the level of qualified services these individuals require.”
Another dilemma regarding ASD is that exists no official department that can keep a check on what is happening in schools with special children.
Dr. Rizwan said, “There is a need for a regulatory body that sets standards and then ensures that those standards are kept. A big problem is the general lack of awareness about the condition, even among medical practitioners. This results in the diagnosis being delayed and in Autism, early diagnosis is a key component in the successful rehabilitation of the individual.”
However, even diagnosis, those suffering from ASD are then met with the problem of lack of schooling. Dr. Rizwan stated, “Even if the child is diagnosed early, the schooling choices are very limited, especially in the mainstream. Properly executed rehabilitation programs with qualified experts are even rarer.”
Sumaira Ahmad*, mother of a four-year-old boy with ASD, while talking to minute mirror said, “We have to pay 4-5000 per therapy session for our kid. It has been more than a year, yet, we are unable to see any improvement as the teachers are not trained enough.” She added, “We have nowhere else to go.”
To date, no studies have shed light on the exact reason for this condition. “In 1990, there was a study which came out in one of the journals in the UK which stated that some vaccines are the cause of ASD. However, later they retracted that piece saying that the data which was used, was fraudulent. Till now, we are not able to get to the root cause of this condition,” said Dr. Ahsan.
Although this issue needs urgent attention, the government has set its priority on other academic activities.
“People cannot afford such expensive treatment. They do not have proper knowledge about this condition.” Said Maj. Gen. Suhaib Ahmed (R). He questioned, “How do you expect them to take the child to these therapists?” adding that it was high time the government stepped in and did something for autistic children.
The name of the mother has been changed for privacy concerns.