Understanding the spectrum

April 2 was designated as World Autism Awareness Day in 2007 by the UN to promote the full realization of human rights and fundamental freedoms for people with autism on an equal basis with others. The theme for this year’s World Autism Awareness Day is ‘Moving from Surviving to Thriving’, recognizing that, despite their challenges, those with autism can become valuable, contributing members of society. Take the animal behaviourist Mary Temple Grandin for example, who revolutionized the cattle-management industry by developing corrals that lower the stress and improve the quality of life of cattle. Rather than holding her back, being born with autism fuelled her success. Stories like hers have also helped transform our understanding of what it means to live with autism, with the UN seeking to move beyond the emphasis on awareness and towards acceptance and appreciation of autistic people and their contributions to the world. Sadly, here in Pakistan, awareness remains a challenge in much of the country – acceptance, let alone appreciation, might be an even tougher challenge.

The Pakistan Autism Society estimates that there are around 350,000 children with Autism Spectrum Disorder (ASD) in the country. The real figure may well be higher given that official recording is not one of the country’s strong suits and underreporting due to the stigma people with mental health difficulties are often still viewed with in Pakistan. Some experts say that, while the country has made significant progress on child mental health over the past decade or so, there are still less than ten child psychiatrists in a country that has an estimated 2.5 million children who need mental health support. Treatment options for those with ASD, reflecting general trends in our healthcare system, are mostly concentrated in big urban centres. And they are not financially accessible, to say the least. According to some reports, people from more rural districts have, in some cases, quit treatment for their children mid-way due to the costs of travel and treatment combined being too high. Some parents whose children have ASD have been reported to take them to shrines and Pirs for ‘healing’, while others simply refuse to admit that their child might need help.

A lack of awareness and stigma have helped lead to a situation where 90 per cent of Pakistanis with common mental health disorders are left untreated, costing the country an estimated Rs617 billion as of 2020. How many Temple Grandins has Pakistan missed out on? When it comes to mental health and disabilities, there is very rarely any standardized treatment and ASD is no different. The spectrum is broad and each person requires highly customized care often refined over time. What this means is that along with more early diagnoses and awareness and less stigma, care must be consistently available and widespread.