Qazi Fazli Azeem is an autism self-advocate from Pakistan who champions autism awareness and inclusion, particularly in the South Asian community. His profile vividly illustrates his experience with Asperger's Syndrome while also introducing us to global autism advocates. Explore Fazli's journey of transnational leadership in the autism community.
Tell us about yourself.
I am Qazi Fazli Azeem, the first and only self-advocate from Pakistan (since 2006) and the only South Asian self-advocate for the Autism Spectrum, due to my interactions and trainings conducted in Bangladesh, Pakistan and India, through the South-Asian regional Autism conferences. It has been 10 years now since 2006 when I was diagnosed as an adult on the spectrum (Asperger's Syndrome) during a time when doctors and pediatricians across Pakistan did not even know what Autism was. Because I was a student of visual communication design, I was familiar with the process of explaining my design work to clients and educators. I used this same process to explain to the people of Pakistan, through my interviews on cable and satellite television, about the symptoms of Autism, early intervention and sensory overload. My familiarity with Internet and technology led to me uploading my television interviews onto my YouTube channel, and from there, thousands of Pakistani and Pakistan-origin parents and doctors watched my interviews and tried to contact me online.
This led to me being invited to speak at regional South Asian Autism advocacy, awareness and research conferences in Bangladesh, India and Qatar, meeting international experts, academics, educators and researchers in the process. During these interactions, most of the people I met were professors, researchers and educators. This motivated me to shift my career path from freelance graphic designer and vocational training computer graphic instructor (back then) to full-time university design educator, entrepreneurship trainer and part time self-advocate and trainer for Autism spectrum of disorders (now).
Being associated with universities and academia over the last decade has given me both the nurturing systemized environment I needed to learn, plan and take my personal and professional interests into account through the process of educating professionals and design research. My current professional title for the last 1.5 years is Assistant Professor and Founding Head of Department, School of Art and Architecture at the Karachi Institute of Technology and Entrepreneurship, a 3 year old undergraduate university that was recently granted an independent charter by the Sindh Provincial Assembly (Parliament) in Pakistan. Before joining KITE, I completed an MFA in Design at the Dynamic Media Institute at the Massachusetts College of Art and Design in Boston between 2012 and 2014, through the U.S. State Department's Fulbright Scholarship. During my time in Boston and neighboring Cambridge, my graduate electives were at the MIT Media Lab's Lifelong Kindergarten group under Professor Mitch Resnick (Scratch, Lego Mindstorm Robotics). My graduate startup Curious Learning was incubated at the Harvard Innovation Lab which led to a semi-finalist position at the MIT $100k Entrepreneurship Competition 2014 as well as being invited by the U.S. Department of Education and White House OSTP at the 2014 Education Datapalooza in Washington D.C.
It was during my 2 years in Boston that I had the excellent opporunity of meeting American self-advocates at Autism conferences and public awareness events, as well as leading researchers, educators and public policy makers. I am thankful to the U.S. State Department for sponsoring my education and enabling me to interact with the American people, American self-advocates and American educators, most of whom I now know as friends and colleagues. All Fulbright Alumni return to their home country after completion of their programs to share their experiences, and I have been sharing what I learned in the USA these last 2.5 years in Karachi, Pakistan.
When were you diagnosed with Asperger's Syndrome and how did your journey of autism self-advocacy begin?
My whole life until the age of 25 years, I had only had 2 "friends" and only for very short periods of time. I preferred studying and working alone, long nights on my computer or with books in the library. I had all the symptoms of higher functioning Autism (Asperger's Syndrome) but was never diagnosed when I was younger due to lack of psychologists in Pakistan (just look at this news report from last year which says that there were less than 400 trained psychiatrists in Pakistan, a country of more than 192 million people and the 6th largest population in the world).
Being alone most of the time and self-reading based on interests, I had developed hyperlexia — very high reading speed — which led to me learning most of what I know through books and articles found online. Back in 2006 in Pakistan, copyright laws were not enforced and my technical skills, need for a stable income and lack of common sense led to being employed for a short time by a company that exported pirated DVDs outside Pakistan. The same year, laws were passed to protect foreign copyrights and Pakistan signed international agreements to stop copyright violations. It was during this time that I stopped working for that company and read about the American programmer Bram Cohen who had created the BitTorrent technology that I had used to pirate DVDs. Bram was arrested in the USA for releasing BitTorent source code online and enabling media piracy on the internet, something that continues to this day. However, the article stated that he was not prosecuted as his lawyer proved in court that he was undiagnosed and had Asperger's Syndrome, which impaired his world view and judgement. I had never heard of Asperger's Syndrome before in my life until I read that article on Bram Cohen, the creator of BitTorrent.
When I went to the Wikipedia article on Asperger's Syndrome and read about it, for the first time in my life, I finally had words to describe how I felt, how I saw the world, the challenges that I had always had in my communication, my lack of eye contact with strangers, my obsessions with arcane and technical subjects, my anti-social behavior and avoiding groups of people and social conversation. In the next 24 hours after reading that article, I had found other self-advocates online through their interviews.
I had emailed leading researchers in Hyperlexia and Savant Syndrome, such as Dr. Darold Treffert (who I would continue to email over the years), parent and advocate from Wales, Adam Fienstien (who, to both our surprise, I would go on to meet in a few years time and be interviewed by him in his seminal book "A History of Autism: Conversations with the Pioneers"), and a parent and self-advocate Jene Aviram in New York City (whom I met with her family when I passed through New York during my Fulbright scholarship in Boston). She had also interviewed another self-advocate on the spectrum, the American self-advocate and now a director of Autism Speaks USA, Dr. Stephen Shore. Through sheer coincidence, I met Stephen Shore over the next few years at conferences around the world and during my time in the U.S.A. It was his interviews and his books that gave me a template, about what a self-advocate could be, what a self-advocate should do in the world and how a self-advocate fits in society.
But, to answer your question about my own diagnosis, when I started emailing experts online about Autism symptoms and how to go around getting a diagnosis, I emailed Dr. John Vincent of the Canadian Institute of Addiction and Mental Health. He had been conducting a large genetic study of people of South Asian origin (including families from Pakistan, India and Bangladesh) to find a possible genetic component of Autism among families with large numbers of people on the Autism spectrum. Dr. John Vincent emailed me back that he, Dr. Douglas Blackwood (University of Edinburgh), and Dr. M. Ayub (formerly of the Mayo Hospital of Lahore in Pakistan) were actually about to visit my country, Pakistan, to take genetic blood samples from families with members (diagnosed or otherwise) on the Autism spectrum.
They visited my family and took blood samples, based on my description of their behavior having symptoms common for Asperger's Syndrome. It was Dr. John Vincent and Dr. Douglas Blackwood who made me fill out their questionnaire based on the surveys developed by Dr. Simon Barron Cohen of the Autism Resource Centre at Cambridge University in the United Kingdom for Asperger's Syndrome and adults on the Autism spectrum. They confirmed that I was indeed on the Autism spectrum. However, since they were international scientists and researchers, they advised that I should get a formal diagnosis from a local expert, if I wanted further support or advice from professionals.
When I approached local doctors and pediatricians and psychologists in the leading private hospital in my city, all of them refused, stating that in their experience, no one in Pakistan was qualified to do adult diagnosis for anyone on the Autism spectrum. Over the years, I have been contacted, called and emailed and have even met a few adults on the Autism spectrum in Pakistan. Their families told me that they were diagnosed while they were outside Pakistan and even after diagnosis, they did not want even other family members to know about it, due to the social stigma of disability or being different. Hence, I was refused formal diagnosis a decade ago, but this did not stop me from helping others, particularly parents of children with regressive Autism, non-verbal children and those with severe sensory overload issues.
I found an online free forum where parents of Pakistani origin shared questions and advice with others like them, the Pakistan Autism meetup group. It was here that I connected with most parents inside Pakistan, and advised them based on my own personal strategies of managing sensory overload and personal learning while I was growing up here in Karachi.
This self-advocacy journey that started over a decade ago was simply for a singular purpose, to help understand myself better by helping others like me, learning from them as well as others around the world, seeing what is possible, what works and what I have not tried yet. The resulting exchange was that I have received thousands of emails from parents of autistic children from all over the world, thanking me for my free advice, sharing my own strategies and story and using similar solutions to help their own children minimize sensory overload, communicate faster and reduce the challenges in learning, dealing with their environmental issues and moving on to learning vocational skills. I try my best to do the right things, to follow laws and be an upright citizen, as I know that I was infringing copyright law only a decade ago for a short period of time. But then, I am reminded of Apple co-founder Steve Jobs and many American entrepreneurs of their generation who were doing the same when they were younger (Steve Jobs used to sell illegal devices which enabled people to use pay phones for free), and I guess that ties in somewhat to my current career path, teaching the current generation of technology entrepreneurs in Pakistan, helping them navigate grey areas while growing their startups.
How does Asperger's impact your personal and professional life? And are there any misconceptions about your experience as an adult on the spectrum?
Asperger's Syndrome and the challenges of the symptoms have always been there in my life. When I was younger, till age 20, these challenges were so significant that it led to a life living mostly in my own protected environment, away from social interaction. It was access to computers and the Internet which eventually enabled me to learn, at age 25, about the Autism spectrum and about Asperger's Syndrome — the symptoms, challenges and possible solutions.
I know now that for a majority of those on the spectrum, the amygdala, a part of the brain, is significantly larger (see articles online about macrocephaly in Autism and larger amygdala). This leads to lack of eye contact with others, social anxiety due to very loud or very negligible sensory information (i.e. sensory overload or sensory deprivation), which results either in the person on the spectrum being very sensitive to their environment (hypersensitive) or through neuroplasticity, not being sensitive at all (under-sensitive and non-responsive to the environment).
With my case, it was hypersensitivity to environmental stimuli. I was sensitive to environmental sounds, children crying hurt my ears, phones ringing, washing the dishes, water dripping, use of the chalkboard, the class period bell ringing in school... these were all examples of environmental situations where my ears hurt. Removing hair from the ears (with hair removing cream), swimming underwater and using the building escalator all contributed to getting used to air pressure changes in my ears. And finally using sound-blocking headphones in public fixed the loud sounds in the environment which used to cause pain in my ears as well as social anxiety.
When people took photographs, the bright flash used to blind me for minutes. These days no one uses camera flash anymore as smartphones work well even in low-light conditions so the camera flash is non-existent. In terms of actually having conversations with people, for nearly 20 years I used to avoid eye contact but over time, I practiced looking at my own eyes in the mirror and learned to tolerate making eye contact with people by looking at their nose, as I learned that not making eye contact leads to them thinking that I am hiding something from them. Living by myself for nearly 2 years in the U.S.A. during my education there was a great learning experience as I became independent and learned about social conversation practices. I am not as social as other people and it does take me time to decompress when I have been around too many people, but over time, I have gotten used to managing the sensory overload.
I have met some people (thankfully, only a small number of them) over the years who do not know about Autism and even accused me of not being on the Autism spectrum and saying that there is no such thing as Autism. I have ignored such outliers as their assumptions are not based on scientific evidence, but their own obsolete understanding of the world. Autism has always been there, we have a word for it now and can describe its symptoms, but hundreds of years ago there was no way to describe it scientifically and hence, it is only through documented eccentric behavior through history, that we can read up about exceptional or gifted people or those who made contributions to their field, despite being different, despite, possibly being on the Autism spectrum.
The one thing I want to make clear is that once you have met one person on the Autism spectrum, you have literally met that one person. No two people on the Autism spectrum are completely alike, each person has their own abilities and challenges, but they all share the underlying challenges and conditions, also at a variable spectrum level.
Some require more support particularly when younger, such as early intervention, and some require medium or minor support, however everyone on the spectrum, should have support when they need it, and by that I mean both services by professionals, educational opportunities thorough inclusion as well as the understanding and support of society and the people around them. In our diversity lies our strength, minimize the challenges and the abilities will emerge, we all have ways of contributing to society.
What challenges does the autism community face in Pakistan, and more broadly, in South Asia?
My "lack of fear" in sharing my own story and becoming the face of autism awareness not only in Pakistan but also in South Asia (where 25 percent of people in the world live today) is a direct consequence of a symptom of Autism, where people on the spectrum do not understand fear. In South Asia, there is a local idiom/saying in the local urdu/hindi language: "loog kya kahein gaye" which translates to "what will people say about you...?" which means that you should always fit in and do what everyone else does so that people have nothing special to say about you and that they do not talk about your individuality to preserve family and tribal "honor."
I am the first (and regrettably, still the only self-advocate for South Asia since 2006) because I specifically chose to ignore that idiom and social law, not because of my own interest in understanding myself and improving myself, but to help others like me, so that they do not have to face the same challenges that I did while I was young and growing up.
There are a few other people I have met on the spectrum across the region, but they are not self-advocates, they do not want to be identified, they do not want to be interviewed and do not want to connect to others like them. Most of them are pressured by primitive societal issues of being the "same" and "conforming" to hide who they are, even it means never being able to connect with others like them, other self-advocates.
In the last couple of years, I have seen excellent initiatives in South Asia by the governments of Bangladesh and India — in supporting their own special educators and policy makers, who are learning from international experts and researchers — to implement wide-ranging lifelong support initiatives in their own countries, albeit at a smaller scale than needed. Regrettably, the "political reality" of Pakistan and other countries having active long-standing and monumental historical disagreements with both Bangladesh and India (both who have fought wars with Pakistan in the past) has directly resulted in minimal exchanges in Autism expertise at the government or official levels. It is only happening at the private or individual level when a parent from one country contacts a parent from another country online, and they either visit each other (after long and painful visa procedures which take months of documentation) or they teach each other online through the Internet.
While parents of children on the Autism spectrum could benefit from open sharing of regional knowledge and collaboration with regional experts, these opportunities are few and far between due to the political confrontations between South Asian countries (as an example, a law was passed in Pakistan this week to ban all Indian movies and television channels for the foreseeable future, and India has done the same in their country). Take my own example, I am the South Asian self-advocate for the Autism spectrum, and the first time I was invited to India for the regional Autism conference was back in 2008. The second time I was invited there was in 2015, after a period of 7 long years, and till the last day, I did not know if my visa would come through. Here in South Asia, like most of the world, we face the same problems, but due to the political reality, we are pressured and forced by our own governments not to collaborate with each other, due to nearly 60 years of war (South Asia is the last remaining nuclear flashpoint in the world, over the disputed Kashmir mountain region which supplies all of Pakistan and India's river waters).
I have met parents and educators of children on the Autism spectrum from all over the South Asian region, and they are the same as parents of children on the spectrum from Pakistan, they share the same questions, outcomes, challenges and hence, solutions. Politics and military confrontation in South Asia is directly interfering with primary people-to-people initiatives such as SAARC by non-facilitation of official representatives, universities, educational experts and professionals. I do not represent my government, neither do I speak for anyone except myself and by association, the South Asian autism community, we want greater interaction and cost-effective exchanges between us. We can no longer rely on meeting in neutral regions such as Dubai (UAE), U.S.A (North America) and countries in Europe, due to the prohibitive cost of international travel.
My self-appointed title of South Asian self-advocate for the Autism spectrum became formalized over the years after I represented Pakistan at regional South Asian autism conferences and then spoke on behalf of South Asia at the UN in New York on April 2, 2013 for UN World Autism Awareness Day. I want greater participation from the Government of Pakistan as well as official representation at regional Autism events, which led me to be interviewed and write articles in newspapers to get my message to them, if they are listening.
What has been the proudest moment of your career?
I have changed my understanding of the word pride/proud over the years. I do not feel proud or pride. I feel happy when I am of service to the world, not just to my country. I believe in the universal principles of humanity and that there is more in common with us, compared to the differences between us all. Over the last few years, there have been four times that I have felt that I was able to serve humanity at a greater level, above and beyond what I had achieved in the past. The first instance is when I won the US State Department's Fulbright Scholarship and represented Pakistan and completed my MFA Design terminal-masters degree from MassArt and the MIT Media Lab (2012-2014). In the USA, my being on the Autism spectrum was seen through the lens of neurodiversity, and I was respected and listened to, as an individual, where my differences were celebrated and my abilities were nurtured, both by my educators as well as the American people who I interacted with.
The second time I felt happy serving the world was when I represented Pakistan and South Asia at a panel of speakers on the Autism spectrum at the United Nations on April 2, 2013 for UN World Autism Awareness Day. I spoke about the challenges as well as learning opportunities and advances in Vocational Training in South Asian countries which I had personally visited over the years. The third time that I felt that I contributed to an international effort to bring about productive change was when I was asked to contribute chapters to the book "Been There. Done That. Try This!: An Aspie's Guide to Life on Earth" which has contributions in it from self-advocates from around the world, including Dr. Temple Grandin and Dr. Stephen Shore of the USA. The foreword and editing for the book was by Dr. Tony Attwood of Australia, a world-renowned expert in Asperger's Syndrome and higher-functioning Autism. This is the first and only book of its kind in the world, written by self-advocates on the Autism spectrum for newly diagnosed youth and adults on the Autism spectrum, sharing advice from our lives.
The fourth time that I felt I was adding to an international conversation was when I was invited by the US State Department to the 2015 Global Entrepreneurship Summit at the United Nations office in Nairobi, Kenya, where I heard U.S. President Barack Obama address African entrepreneurs from across the region. I advised many international entrepreneurs based on my own training in entrepreneurial thinking and strategy at the MIT Media Lab as well as my current role as an Assistant Professor of Design at the Karachi Institute of Technology and Entrepreneurship. These four events were formative on my career as well as how I see and interact with the world.
What are your hopes for global autism awareness, and what more needs to be done to support individuals on the spectrum?
I strongly believe in an inclusive future for humanity, as shown in the many incarnations of the American TV show, Gene Roddenberry's Star Trek. At a personal level, I felt happy when I met both William Shatner (Captain Kirk) and Brent Spiner (Data) at the Boston Star Trek convention back in June 2013, and had conversations with them about an inclusive society in the coming future. With the release of American Steve Silberman's epic book "Neurotribes" last year, the current conversation in the US and around the world has shifted to accepting our individuality and abilities. This was what Steve Silberman said during this year's World Autism Awareness Day on April 2, 2016 at the United Nations in New York. We have to approach Autism from a strengths based model, focusing on what the person on the spectrum can do (and not on what they cannot do), as taught by American self advocate Dr. Stephen Shore of Adelphi University.
My hope for global Autism awareness efforts is that we can, someday soon, put aside our primitive tribalistic differences of nationhood, religion, language and regional culture, and approach and tackle Autism at an international level, as something that unites every person in the world. We have the same problems and the same solutions. If there was a subject to end all wars and work together by sharing resources, Autism is that challenge.
I look forward to a future where the Autism service providers use technology to overcome borders and serve those who need support, all over the world. There are too few qualified and skilled educators, researchers and professionals working for Autism around the world. Sharing of services, resources and research findings is the only was to benefit us all. In an ideal world, there would be an organization with as much credibility at the United Nations, working solely for the objective of research and providing services for those on the Autism spectrum and their families, educators and caregivers. I hope other self-advocates for the Autism Spectrum come forward from South Asia, like I did a decade ago, and help grow Autism awareness and advocacy in our part of the world.
Qazi Fazli Azeem's Autism advocacy and awareness work in South Asia and Pakistan can be read about on his website www.autismpakistan.org