This side of the podium: Finding autism’s voice

The work of autism advocacy organizations is vital and urgent.

By STEPHEN SHORE
Parent and child (photo credit: Thinkstock)
Parent and child
(photo credit: Thinkstock)
I spend much of my time explaining a subject that is outside of my professional area of expertise – Autism Spectrum Disorder. I do this because I have the condition.
I have presented my story in 30 countries across six continents, including 45 of the United States. I always share insights and observations based on research, practical experience working with individuals – all from the perspective of my own life as a person anchored on the autism spectrum.
The fact that I regularly speak in front of audiences as large as 1,500 is quite surprising considering that at age 18 months I was struck by the “autism bomb.”
My parents watched as their baby lost all functional communications, began having meltdowns, self-stimulatory and showed abusive behavior. In short, they suddenly had a very autistic infant on their hands.
At that point it would have been very hard to imagine their son would one day be a university professor researching and teaching future educators, psychologists and social workers in linking solutions to the unique needs of autistic individuals.
Future oratory would not have been part of the forecast in those early days.
Although my parents rejected the professionals’ call for institutionalization at age two, instead implementing “home-based intensive early intervention,” my full use of speech did not begin to evolve until age four. At six, I began to attend regular public school kindergarten where I quickly turned into a social and academic catastrophe.
I remember for example, that I used to repeat the letter “B” endlessly. This did not endear me to my classmates who responded with bullying rather than friendship. I was soon lagging a grade behind my young peers in most subjects.
Talking with adults, ironically, came easily.
I could go on for hours with them on the intricacies of astronomy. Unfortunately, not all my teachers were impressed by my academic skills. In third grade, with a stack of astronomy books on my desk at school, a teacher direly admonished that I would never learn how to do math. Yet somehow, I manage to teach statistics at the university level.

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MIDDLE AND high school were better suited for someone with my special abilities. I began to understand that using words instead of sound effects from the environment greatly helped with social interactions.
Additionally, the educational framework of these grades where students can begin to choose elective courses and join clubs focused in areas of their interests enabled me to begin to develop socially.
My fascination with music, electricity and the outdoors led me to courses and clubs in band, electronics and rock climbing, where I discovered confidence-building pleasure in excelling.
I really began to flourish in college where bullying was no longer “cool.” Suddenly, for the first time, I was surrounded by a group of friends. I finally found a place where if I wanted to ride my bicycle at midnight I could find someone just as strange as I was to join me! My studies focused on my interests in music, later accounting and information systems, and eventually to completing a doctorate in special education.
I am not the only one who has succeeded to integrate myself socially and academically, despite the heavy odds. Temple Grandin is a celebrated example of one who harnessed autism to build success.
Eustacia Cutler viewed her daughter Temple’s preoccupation drawing horses as a key to expanding her world by drawing other animals and objects. Her art progressed to drafting plans for humane cattle-processing stockyards. Today, her ideas are used in a majority of beef-processing plants in the United States. Temple Grandin is recognized as a true expert.
MY PARENTS similarly supported my interests.
When they noticed my passion for taking apart and reassembling watches, they encouraged this skill by providing other mechanical devices for me to explore. Their guidance and direction eventually helped me transfer that interest to bicycle repair, which helped me cover college expenses. When interest in astronomy became all-consuming, a telescope appeared and we’d examine the heavens late into the night. In fact, had I not been scared off from mathematics in elementary school, I might well have become an astronomer.
These experiences and the self-confidence instilled in me by my parents led me – despite my challenges in communication, social interaction and sensory differences – to engage in public speaking, an activity many loathe more than a rootcanal appointment. How does one on the autism spectrum manage communication and social interaction with a 1,000 or more at a conference? Beyond the stereotypes, many autistic individuals actually make good educators.
This may be because we have by necessity fine-tuned reliable means of communication; we posses a burning desire to understand the structure of our environment and strive to explain such matters to others.
Clearly, all these are very important prerequisites for any good teacher.
In August, I will give a keynote address to an important international conference in Jerusalem on Autism (www.icare4autism.org). On that occasion, or leading a discussion in a class at Adelphi University, or presenting to an audience of any size across the globe, I have learned to leverage my strengths to communicate about autism while accommodating for its difficulties.
Sensitivity to bright lights can be handled by wearing a hat and challenges brought on by tight clothing can be addressed by eschewing the attire of a banker or accountant. My communication and social interaction must remain structured, orderly and predictable. The more I can control my environment, the better I am able to limit weaknesses and draw from strengths.
There are many success stories like Temple and myself. Yet far too many people on the autism spectrum who have not yet found a way to harness their abilities in a way that will let them contribute to, and even lead, in our society. Many were not as lucky as I was to have been blessed with parents and teachers who helped me develop my special skills. Perhaps they did not have the benefit of doctors and therapists to guide them through the difficulties we all experience in life but are so much more challenging for those of us who are autistic.
The work of autism advocacy organizations is vital and urgent. I will continue to do my part and devote so much of my time reaching and teaching while using my academic, practical and personal experiences as an “insider” to improve the lives of those with autism.
I hope that society in general will redouble its commitment to develop and advocate for the tools to help all our children fulfill everything of which they are potentially capable.
The writer, a doctor, is an Assistant Professor of Education at Adelphi University in New York and serves as an adviser to ICare4Autism (www.icare4autism.org), an international organization that aims to serve as a catalyst for autism-related research. ICare4Autism is convening the 2012 International Autism Conference in Jerusalem from August 1-2.


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