Please tell a little about yourself and your role with autism in Pakistan.

I am Qazi Fazli Azeem, born 20, August 1981, with Asperger’s Syndrome and savant abilities (memory, pattern recognition, hyperlexia etc.) and am the first person to come forward in Pakistan with Asperger’s syndrome and Autistic Spectrum Disorders Awareness. I found out about my own diagnosis purely by accident on 6 October 2006,

and since then have worked nonstop in my spare time to increase autism awareness not only in my country, but also in south Asia (India and Bangladesh) and in the world. I have been interviewed widely in Pakistan and by international media, and led the efforts for autism awareness on 2nd April 2008 World autism awareness day in Pakistan. See my websites www.fazliazeem.com and www.autismpakistan.org for videos and details. I have also represented Pakistan as a speaker and self-advocate for autism at international Autism conferences in Bangladesh, India and Qatar where I spoke about my own experiences and also about my recommendations to parents, doctors and special educators all over the world. I provide a unique inside-view of autism due to my extensive reading, learning and teaching abilities. Professionally I am an American-certified multimedia trainer, established graphic designer, brand manager and international numerologist, aside from my volunteering work for inter-faith cooperation and autism awareness. My role started as self advocate and Awareness activist, but has expanded to trainer, advisor, researcher, and country representative for Autism. My work continues to change the lives of families with members on the Autistic Spectrum.

What is the prevalence of autism in Pakistan (if known)?

In south Asia, the countries of India, Pakistan, Bangladesh, Sri Lanka and others have recently, in the last few years, been exposed to the awareness, research and documentation on Autism spectrum disorders, that has existed in the developed world for decades. Due to which many children have been misdiagnosed as PDD/NOS or have been kept locked away in homes due to misguided belief in magic (primitive tribal/religious thought) or due to social stigma. While students of special education at public sector universities have done studies concerning existing students with autism at special schools, these studies have been area or city specific, and not country-wide, hence their findings are not standardized, but are estimated to be about 1 in 500. We are in contact with representatives of the World Health Organization in Pakistan and the Agha Khan Hospital, and are trying to get the government to conduct a comprehensive survey. Keep in mind that most studies done in North America regarding people with large numbers of family members on the spectrum (genetic link) have actually been done on people of middle-eastern or south Asian origin, i.e. families from India, Pakistan and Bangladesh due the cultural prevalence of cousin marriages for materialistic reasons (they want to keep property and agricultural land inside the family). My own blood was used for genetic research by the team led by Dr John Vincent of the Canadian Institute for Addiction and Mental Health in November 2006, as my ancestors probably had cousin marriages too.
Due to these circumstances in south Asia as well as in Pakistan, India estimates their figures at 1 in 500 children on the spectrum, and so do we. The population of Pakistan is estimated to be 172,800,048 hence the number of people on the spectrum is estimated to be a minimum 3,45,600 although due to under-reporting, misdiagnosis and social stigma we can say this number is in reality much higher.

How aware of autism is the Pakistani culture? How accepting are they of autism?

By culture you refer to stereotype, the “majority” of people among the population. In all south Asian countries, you will find widespread poverty, illiteracy, bad governance, corruption and abuse of human rights, lesser than Africa, but more than other parts of the world. It is only in 2005 that the first autism awareness campaign was launched in the country by RAMAQ NGO founder Rukhsana Shah, and her efforts were limited and in a handful or areas as she was self funded and supported. In 2006 I went on TV channels and magazines to promote autism awareness after finding out about my own diagnosis. In 2007 and 2008 many mainstream talk shows here invited me on television and my interviews were also published in smaller English and Urdu daily newspapers, which has increased hope and motivation for parents of autistic children who have come forward to seek therapies and support. However, just a couple of weeks back (20 Jan 2009) Dr Maroof Qureshi and his wife Roohi have inaugurated a Karachi city government supported Autism Centre in Gulshan-e-Iqbal town and they have set up the first autism clinics at the government JPMC hospital and the National Institute of Child Health in Karachi. These are pioneering efforts which finally show a step in the right direction. Mrs. Roohi Maroof did a 1-year Autism diploma from Action for Autism Delhi, it was due to her training and experience that she has done what no doctor or government official could do here in the last 10 years. They have launched mother-child and special educator training programs and plan to set up a specialized school in the future after adequate faculty have been trained. By awareness, due to my interviews on the internet, talk shows, newspapers and magazines, and recent articles by parents, Autism awareness is growing among those who are literate, and by setting up trained clinics at government hospitals recently, the masses will benefit, however, the situation is not at all ideal and we are working for any kind of government or private funded campaign to increase Awareness. Those who know of our efforts at the Pakistan Autism Meetup Group are accepting of people on the spectrum, and have offered to help educate and employ those on the spectrum. I am a teacher at many institutes and universities here, I am constantly surprised at the willingness of students to learn more and support those on the spectrum. There is great philanthropic spirit among our population, and compassion for those with adversity, all that is missing is that level of awareness that we work for everyday.

What are the largest struggles for people with autism in Pakistan? Is there a story you know personally that demonstrates this struggle?

By the Autism Spectrum, there are those who are non verbal and have communication difficulties, and there are those who are higher on the spectrum, Aspergers, yet have learning disabilities and social communication issues which do not enable them to get employment or lead fulfilling lives. With the Leo Kanner non-verbal type of autism, the biggest problem is lack of awareness for the parents and hence lack of early intervention, due to social stigma, non-availability of trained doctors, expensive/limited therapists and no single physical organization for all their needs, which is why even those parents who are aware of autism must go to many locations and spend a lot of money on incompetent professionals and in most cases are given wrong advice. When they find out about the diagnosis, most will blame vaccines and try to get chelation or contact quack-doctors such as herbal practitioners (hakeems) who may give steroids to them under guise of medicine. What the Pakistan Autism meetup group (an online web forum made up of Pakistani parents and doctors related to autism) does is give newly diagnosed parents the right advice, sharing their experiences and giving a social environment in their monthly free meetings like a support group where they can talk and meet others like them. So in the non-verbal children’s case, it’s a matter of awareness, how we can get to such parents faster and earlier. An example is the case of Dr Maroof Qureshi and his wife Roohi whose son is non verbal autistic, yet they were given incorrect advice and were not able to find any specialists or doctors in the country, due to which they had to study autism in India for an year and learn how to work with similar children so that others like them in Pakistan could benefit from their experiences. In the case of verbal higher functioning autism like Asperger’s Syndrome, its so common here that most families consider late speech, lack of eye contact, social awkwardness, obsessions and speech peculiarities “normal”. In my own case I was a student of computer science at the University of Karachi where I had to leave the degree program as I could not clear two mathematics courses due to dyscalculia, a learning disability, at the time I did not know about Asperger’s Syndrome and autism, and there was no support or counseling available, and this situation is also similar for private sector universities. I transferred credits to a private university and graduated from there, the top 1% of the entire batch. The point is that it took me 6 years to complete a 4 year degree, this wasted time and caused me a lot of pain, and I know hundreds of people like me who continue to go through this cycle, and now that I am a teacher, I keep meeting students with learning disabilities, showing that there is a serious problem in identifying and helping such students earlier, before there problems cause their careers to be destroyed. This problem exists even with gifted students, whose weaker areas are not developed, leading them to burnout, failing their degrees or leaving their field of work. I admire the efforts of US-AID and the American educational system which has given children with special needs the support required to live and work with dignity.

What have been some of the greatest successes in Pakistan with autism?

Every drop makes the ocean. There have been many achievements and breakthroughs, due to the hard work of parents, doctors, special educators and researchers in Pakistan, all have been recent efforts and have started a series of events which will get us where we want to be, maybe not in an years time, but soon enough. Since I joined the Pakistan Autism Meetup Group in December 2006, I contacted Pakistani parents of autistic children in America, Canada and England, and they shared their successes with us by sending books, dvds and training materials to us, through which we established 4 Autism Resource centers for parents, there is one in Karachi at the Ma Ayesha memorial Centre, one in RAMAQ Lahore, one in Step To Learn special school in Islamabad and one at the Missionary hospital at Quetta. Through these free resource centres and free monthly meetings, parents of rural areas have also been able to get support. I have been interviewed widely in Pakistan on talk shows, newspapers and magazines, and also by the American Chronicle of US, by NDTV of India and by the Daily Star newspaper of Bangladesh, and on websites across the Internet. This has increased awareness and has made parents of autistic children come out from the shadows to seek education and therapies for their children. This has also enabled me to contribute from my own personal and family experiences on handling and educating those on the spectrum. I have presented papers at the 2nd South Asian Regional Conference on Autism at Delhi, India (2008), at the Awares.org International Online Autism Conference (2008) and also at the 3rd South Asian Regional Conference on Autism at Dhaka, Bangladesh (2009), as well as representing Pakistan at the 3rd Annual Disability conference at the Shafallah Centre at Doha, Qatar (2008). The recently opened Autism Centre at Gulshan-e-Iqbal at Karachi is a step in the right direction as training in the structured TEACCH and other systems is now being imparted to mothers and special educators here. While I can say these are indeed successful developments, they are a start of some thing, not the end of it, we look forward to increasing awareness and getting more government and private sector support to widen our reach and get those across all ages and spectrums into training programs, as well as increasing awareness for other learning disabilities, which has not been done enough.

Is there anything else about autism and Pakistan you would like to share?

Most of the updates regarding the awareness efforts and trainings can be seen on the Pakistan Autism Meetup Group’s online forum http://autism.meetup.com/77/messages where you can also interact with parents and professionals, and also on the www.autismpakistan.org website which I update every month. My youtube channel http://www.youtube.com/qfazeem can also be seen, there are a lot of videos there of my interviews and videos I made of lectures and autism workshops, all are in English or have English subtitles. The autism movement in Pakistan has just started a few years ago, we have a long way to go and thousands of people to reach out to, it continues to be a non-profit voluntary parent-led campaign. We look forward to opportunities for learning.