Since 2006, I am Pakistan’s first and perhaps still the only self-advocate for the Autism Spectrum. I was diagnosed with Asperger’s Syndrome later in life, at age 25, which allowed me to work towards minimising my sensory and communication issues. This journey as the first self-advocate in my country eventually led me to become the first self-advocate from South Asia, speaking at the United Nations in New York on April 2, 2013, exactly two years ago.
But while much of my journey was about discovering myself, there was much that I learnt about my country and my people when I began helping others through autism advocacy.
My personal story and history is directly connected to the greater adoption of technology in South Asia, in the context of reducing costs, spreading education, inclusion and awareness. I was born in Karachi, Pakistan and have lived in the city by the sea my whole life, apart from the two years when I left to pursue graduate studies in Boston, United States through the Fulbright Scholarship.
In a world where few are championing their cause, some autistic people speak up for themselves and those who suffer in silence
I had severe dyscalculia (math problems), echolalia (repeating things without understanding their meaning), lack of eye contact, no friends (other than two cousins who I met at family events), hyperactivity (climbing trees and jumping on beds and couches to the point of breaking them), fear of hair cutting (due to cold metal scissors), aversion to taking baths (due to water that was too hot or too cold), cutting nails (due to sensitive skin underneath fingernails) and various quirks that I now know as traits of Asperger’s Syndrome or higher functioning autism.
Since I was the first self-advocate from Pakistan, my role-models were self-advocates in the United States and United Kingdom, who were writing their life stories and solutions in books, giving lectures at conferences that would be uploaded online, and being interviewed on radio, magazines and television programmes.
For the first few years, there was simply too much information to filter and make sense of, but over time, interviews of self-advocates allowed me to apply things that worked for others. If you are taking care of a person on the spectrum, it is a life-long learning process as no one has all the answers, and there is a lot of trial and error.
There is more free-content online than paid content, most of it is not good in quality so asking another parent or expert online to recommend you to very specific videos or presentations for your specific questions tends to save time, energy and effort.
A lot has happened in Pakistan since 2006, when I started advocating and spreading awareness through my TV, radio and newspaper interviews about the symptoms and challenges of Autism. Today, there are small pockets of education and cooperation in all major cities of Pakistan —Karachi, Lahore, Islamabad, Quetta and Peshawar — that are centred around free autism resource centres that are run inside special education schools and hospitals.
Then there is an online conversation, which is developing a community around autism: parents, educators and researchers exchange notes through the free online forum of the Pakistan Autism Meetup group, setup online in 2003 by parent Saira Salman. The meetup website is where I first met parent Rukhsana Shah, who runs the RAMAQ Centre for Autism, which will become active next week, and is supported by the Mahvash & Jahangir Siddiqui Foundation.
There exists another trend among South Asian families that deal with autism — of packing up and leaving for a country in the West, since they believe that they’d be able to find better support there.
The Ma Ayesha Centre in Karachi was a central meeting place where parents first arrived to share tips and advice. This is where I first met parents of a son with autism, Dr Maroof and his wife Roohi, who completed a diploma in Autism Education in India and setup the Karachi Centre for Autism. This is where I first met parent Irum Rizwan, who trains special educators and advises doctors at the Dow University Hospital in Karachi.
When I started my journey of self-advocacy, there was little knowledge or awareness of autism, not just in Pakistan but in our region. At the first South Asian Autism conference in Delhi (2008), for example, I was speaking about some of the “unconventional” strategies that I had used to help minimise my issues.
It was here that I first learnt about South Asian efforts for autism awareness and support on governmental level as well as political leaders who had started working together in 2007 towards regional autism awareness and support.
Five years on, when I was at the UN in 2013, I saw a presentation on the advocacy that has happened since in Bangladesh through Saima Wazed Hosain, the daughter of Sheikh Hasina Wajid. I have seen first ladies of many countries around the world come together to work for Autism awareness; but Pakistan always seems to go missing from such endeavours.
Through my conference presentations in Bangladesh and India, I was able to visit their leading schools for children on the Autism spectrum. Just like Pakistan, all of them were started by parents of children who did not find adequately trained professionals in their cities. They taught themselves and helped their children. This led them to becoming special educators and helping other families and children in their region.
But there exists another trend among South Asian families that deal with autism — of packing up and leaving for a country in the West, since they believe that they’d be able to find better support there.
Contrary to popular belief, however, the western model of inclusion is far from perfect as most parents have to rely on incredibly expensive interventions which are paid through insurance claims that take an average of two to three years due to massive demand. Long waiting lists of parents as well as expensive patented systems (a consequence of capitalism) has led to a fragmented and broken system for autism education in America, with massive variation based on what state and city parents live in.
In such an environment, there is a massive global movement of western educators who travel to developing countries around the world (as well as in South Asia), slowly training educators through specific goal-based workshops, which are now slowly moving online (a consequence of cheap mobile phones, tablets, internet and apps).
This is highly relevant, as there have been many cases of Pakistani parents of children with Autism being denied immigration to countries such as Canada, due to the high cost of education such children will incur abroad.
Instead of parents trying to migrate abroad, Pakistan needs government and private philanthropic support to train existing educators. Based on published scientific research, Universal Design (as advocated by UNESCO and INCLUSION International) shows that when we design and create places and tools and facilities for those with disabilities, we create an inclusive system for everyone.
Unfortunately, at every international autism advocacy event where I have represented Pakistan, I did not find others, specifically from the government, to champion the cause of autism awareness. This is despite a plethora of interviews and stories of autistic children that have started appearing on cable television. The government is mum, its support for autistic people is missing.
If you are taking care of a person on the spectrum, it is a life-long learning process as no one has all the answers, and there is a lot of trial and error.
There have not been any epidemiology studies for autism in Pakistan. Due to societal norms, parents hide their children at home till the day that they cannot take care of them as adults with autism, which is when some of them seek help from a special education centre. The internet and awareness among educated parents has made a difference over the years, but the most progress is made when children are diagnosed at a younger age (as young as the age of two) and early educational intervention starts during formative years.
By comparison, in the US and UK, the numbers are as high as one in 88 children being on the Autism spectrum, and in countries like South Korea, the rates are even higher. On the sidelines of the Pensacola Florida Autism conference last year, Eaustacia Cutler, the mother of famed Autism self-advocate Dr Temple Grandin, argued that there were simply not many doctors or researchers who understood autism well enough some 40 years ago, but things had improved since then.
Eaustacia told me that she did not listen to the advice of doctors to institutionalise her daughter Temple, and instead took her to some of the world’s leading special needs researchers at the Boston Children’s Hospital. She said that Temple was a child of privilege, born to a highly educated and wealthy family. This may be why Temple is probably the first ever case of a person on the spectrum improving over time to become a self-advocate.
The Western libertarian social system enables and encourages individualism; their ultimate goal is for a person with a disability label to reclaim some form of “independence” and be able to move toward an “independent” living system.
This is very different from South Asia’s family/communal living ecosystem premised in thousands of years of social support and practices. We need to have more studies and support for communal living, sustainable housing, environmentally friendly work environments where people on the spectrum can contribute to society.
Our goals must include working with countries across our region, we share language and thousands of years of cultural practices. Just as a western individualism or independent living model was tested and developed by the developed world, we need to create our own inclusive communal model, and scale it for the entire region.
Two months ago, during February this year, I spoke at the Action for Autism (AFA)-Delhi’s South Asian Autism conference after a gap of seven years. The convention brought together researchers and practitioners who shared documentaries of local projects.
This must continue, beyond the annual conference model.
If our abstracts, lectures (audio and/or video) as well as slides can be uploaded to journals and Autism education and advocacy websites, others in our cities will benefit. While a truly inclusive linguistic system is not a reality, quality materials have been translated to local regional languages. Technology can be used to automate much of these cost-intensive processes.
Local researchers must try to work with local doctors and people on the autism spectrum, since our problems are unique given our South Asian culture and regional dynamics. We need a South Asian network of self-advocates, including parents as well as those on the spectrum who want to share their experiences.
Our numbers continue to grow and there are people around the world who are ready and willing to help us achieve success and stronger communities. Before we can advocate for all of us, we must first advocate for ourselves, share our own stories online, on TV channels, on radio, on newspapers, in books and publications. I have spread awareness and put most of my videos and advice online, this is how people around the world found me and educated me through workshops and conferences.
We will all grow old and become disabled, we may be unable to move freely or take part in society without help from others. I hope it will not take that long, as children with autism will grow up to be adults with autism. They have unique gifts, talents and abilities that emerge once their unique sensory and communication challenges get accommodations.
An inclusive Pakistan is a better Pakistan, one which we all aspire to live in. Tolerance of the “other”, the difference, the inclusion that we all want to achieve, begins by including those with “differences” into an inclusive society, educational and professional system. I have met adults with Autism in the US (Stephen Shore, Temple Grandin, Anita Lesko, Jennifer O Toole, Neal Katz and others) who continue to contribute to their country and the world, through educating others and sharing their knowledge. I hope they are joined by other self-advocates from Pakistan and South Asia, as we work towards a better inclusive world for our children.
The writer tweets @fazliazeem and runs the website www.autismpakistan.org to help autistic children and families. You can also connect with him at the Pakistan Autism Meetup group: http://www.meetup.com/autism-77/messages/boards/
Published in Dawn, Sunday Magazine, April 5th, 2015