View this article as it appears in the AWAY journal (PDF).
Originally written by Sophia McDonald Bennett, adapted for this publication by Justin Harford
In 2011, Qazi Fazli Azeem applied to the U.S. Department of State-sponsored Fulbright Program because it allowed him to achieve two goals.
First, he needed a master’s degree. In Pakistan, he was on the faculty at the Indus Valley School of Art and Architecture, the country’s leading private non-profit arts and design university, but he wanted to advance to a permanent teaching position with a higher salary. Hence, the need for a master’s degree.
He could have pursued one in Pakistan, but he had a personal reason for coming to America. He is also the first self-advocate for neurodiverse individuals in Pakistan, including those with autism. Studying in the United States would give him an opportunity to meet and learn from the many American autistic self-advocates who had inspired him over the years through their interviews, books, and media appearances. It would expand his perspective for the work of educating his country about Autism, in which he had been engaged since 2006.
A Life without a Diagnosis
Fazli found out about his own Autism at the age of 25. Up to that point, he had experienced a great deal of success in his life. His family was able to send him to private school. He had started a career as a professional graphic designer and instructor. However, accompanying his success was an internal struggle. Environmental noises from babies crying to water dripping in a sink caused his ears to hurt. It was difficult to look people in the eye. Because of his social anxiety and discomfort with places with high sensory input, Fazli was most at ease in a library studying by himself.
Confirmation of his symptoms from Canadian doctors visiting Pakistan for a medical conference changed the direction of his life. After learning more about the Autism Spectrum, he identified solutions for his hypersensitivity issues. Noise canceling headphones helped him to block out extra sounds, and removing the hair from his ears minimized the intensity of other noises. He figured out that he could appear to look people in the eye by focusing on their nose, and he spent hours practicing on himself in the mirror to perfect this skill.
He made it a life goal to advocate for Autism awareness and techniques for managing it in Pakistan. Creating awareness was an uphill battle. Pakistani doctors refused to formally diagnose him, because they did not have the training. Nearly 17 years ago, his home country of almost 200 million people had less than 400 trained psychiatrists. Fellow Pakistanis who also had been diagnosed as being on the spectrum by foreign doctors refused to support his efforts for fear of standing out. The local Urdu language of Pakistan has a saying, “loog kya kahein gaye”, which roughly translates to “what will people say about you?” “It means…,” explains Fazli, “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.”
Becoming an Advocate
So he became the first and only openly autistic self advocate in Pakistan. He sought out invitations to be interviewed on cable TV about the condition’s symptoms and solutions. He created a YouTube channel where he shared the interviews that he had done on TV. After seeing his interviews, parents and doctors began to reach out. Invitations to international conferences in India, Bangladesh, and Qatar followed. Soon the U.S. State Department took note.
The Fulbright Program arranged for Fazli to study at the Massachusetts College of Art and Design in Boston. While he was studying for his Master of Fine Arts in Design, he also took electives at the Massachusetts Institute of Technology’s Media Lab and received instruction and mentoring at the Harvard Innovation Labs.
Taking Risks and Making Discoveries
It was an eye-opening experience. “Design and its practice in the United States and European countries is radically different from how it is taught and practiced in Pakistan and developing countries. I learned user experience design, interaction design, and universal design, terms that I had not been exposed to during my education and career in Pakistan. My inclusive design focus and direction would not have been possible in my own country, and I was given an incredible amount of freedom to take risks and learn new things.”
Those risks paid off. One of his projects was developing a mobile learning app for school-aged children. His startup Curious Learning won a residency at the Harvard Innovation Lab, and his team showed off a prototype at Education Datapalooza, an event sponsored by the White House Office of Science and Technology Policy (OSTP) and the U.S. Department of Education.
Fazli also made great progress on his second goal while living in Massachusetts. “I was able to meet educators that I had looked up to: Lynda Weinman of Lynda.com and Sal Khan of Khan Academy. It was a conversation with Sal that led me to my design thesis research on inclusive interfaces for learners on the autism spectrum.” He attended a conference where he met with Eustacia Cutler, the mother of famed autistic self-advocate Temple Grandin. He spent time with folks from the Asperger Association of New England, including their director Dania Jekel, the great-granddaughter of Sigmund Freud. A high point of his trip, and of his life, was contributing to the writing of a book by autistic self advocates from around the world entitled “Been There. Done That. Try This! An Aspie’s Guide to Life on Earth”.
Participating in and accomplishing so much naturally involved a great deal of sensory input and unpredictability, but he developed strategies and used technology to adjust. One technique he employed was proprioception, wearing more clothes than needed to exert pressure all over his body, which lowered his anxiety levels when in public or interacting with strangers. This worked very well in Boston’s cold and wet climate, where he did not look out of place wearing multiple layers. He also made full use of technology such as Google Maps and social media to help him plan his activities and the best routes to get there.
What Will People Say?
After returning to Pakistan, Fazli’s career got a big boost. He became an Assistant Professor at the Karachi Institute of Technology and Entrepreneurship, and founded their school of design. Thanks to his leadership, the school granted its first Bachelor of Design degrees soon after.
Fazli also made a great deal of headway on his goal to educate Pakistani society about Neurodiversity. Centers on autism have been set up by the Pakistani government across the country. He later joined SZABIST University in Karachi where they designated him as the person in charge of disability accommodations, entrusting him with a great deal of responsibility to evaluate individual accommodations of students with disabilities and to offer recommendations for ways that the overall accessibility of the campus could be improved. His design support to the architect and disability communities in Pakistan played a role in standardizing wheelchair-accessible buildings in the country.
He has never been afraid to stand out, when fear of community stigma silenced others. “What will people say about you?” They will probably say quite a bit about Fazli.
