The Autism Society Philippines (ASP) is a national, non-profit organization dedicated to the well-being of persons with autism spectrum disorder. The ASP has been in the forefront of providing services and training to families living with autism.

16 April 2012

In His Own Alternative World

By Dang Koe, ASP Chair Emeritus

Diagnosed with “atypical development and strong autistic tendencies” and “too sick” for outpatient treatment, Stephen Shore was once recommended for institutionalization.

As a child, he was non-verbal until he was four years old. With support from his parents, teachers, and family members, Dr. Shore is now a professor at Adelphi University, where his research focuses on matching best practice to the needs of people with autism.

He is a self-advocate, being the president emeritus of the Asperger’s Association of New England, and a former board member of the Autism Society of America. He now serves in the Inter-Agency Autism Coordinating Committee, and other autism related organizations.

In the Philippines, self-advocacy for persons with autism has started, and this will be tackled by Dr. Shore through an interactive web discussion during Autism Society Philippines’ 12th National Conference on Autism come April 28-29.

A Filipino autism self-advocate, David Michael Lopez (aka Kitt Lopez), interviewed Dr. Shore online. Kitt is a graduate of Bachelor of Arts in Communication from the Lyceum Institute of Technology in Calamba City. He currently works in ASP Laguna’s Autism Resource Center and regularly contributes articles to his chapter’s newsletter.

Here, Kitt interviews Dr. Shore:

David Michael LopezWhen did you first know that you have autism and how did you react when you found out?

I probably first became aware of having autism at about five and a half. By then my speech had pretty much normalized and my parents used the word autism in the house in regular conversations. It was not something that was hidden from me. As a result, I had an explanation as to why things were different for me. I think it is important for people who have autism to know about having it as soon as reasonably possible.

Describe autism in your own words.

Autism is a different way of being and perceiving the world. It is not necessarily good or bad. However, there is a lot of good that can be done by working with the characteristics and strengths a person with autism does have. For example, a person with a deep interest in astronomy can be taught mathematics through counting planets or measure distances between objects in space.

What did “bad behavior” mean to you during adolescent days?

“Bad behavior” meant doing things that your parents and teachers did not want you to do such as being rude and not cleaning one’s room. The usual societal rules governed what bad behavior was for me.

Having autism is not an excuse for engaging in bad behavior, but rather a pathway to understanding how to educate the individual in what is good behavior. However, for those with autism, it’s important to teach them in a way they can understand what bad behavior is and how to avoid engaging in such actions.

Being autistic means that you are living in your own world. How did you control your negative emotions such as inappropriate laughing, lack of eye contact, and becoming lonely?

Rather than living in my own world I consider myself as living in an alternative world where things had different meanings for me than for others.

Additionally, I just had different interests than my classmates. As a result I sought out avenues to engage in my interests. For example, for my interest in classical music, I joined a community orchestra. To satisfy my interest in bicycles, I joined community organizations that sponsored bicycle rides in the areas. These examples suggest that it’s possible to find friends and people with similar interests outside of the school setting.

As for being in this world or not, I like to think that I am very much in this world but just tuned to different aspects of it.

As a professor, how do you teach your students the good values?

My goal is to educate my students that people with autism are not necessarily disordered but rather of a different order. Through hands-on simulation activities I try to give my students a sense of what it might be like to have autism. Doing so helps to dismiss the many myths of autism.

One such myth is that people with autism don’t like to socialize. What I have found in talking with many of my colleagues is that they wish to interact with others. However, after so many bad experiences with trying to interact turning out badly, they just give up – as anyone else might.

How will I eventually land a permanent job? Please give me tips.

The best route to employment is through following one’s strengths and interests. Sometimes these interests will need a little molding or direction towards something that can be translated into fulfilling and productive employment. For example, as a child I had a strong interest in bicycles. So strong, that I taught myself to build a bicycle from the ball bearings and spokes to completion. That interest was eventually parleyed into where I at first worked as a bicycle mechanic, and then, running my own bicycle shop to pay for college tuition.

My interests in music led to my working as a professor of music for five years. My fascination with autism has led to my current position as a professor of special education at Adelphi University.

In short, follow your strengths and interests for they may make you an expert in that area beyond anyone else.

What is the strongest message you can bring to persons with autism?

The most important message is that the potential of people with autism is unlimited — just as it is the same as everyone else. Our challenge is to figure out how to access that potential to empower the individual with autism to lead a fulfilling and productive life.

*****

Catch Dr. Stephen Shore and Dr. Temple Grandin, another world autism hero, on interactive web discussion during ASP’s conference on “Living With Autism (Hope@Home), April 28-29, Crowne Plaza Hotel. For details, please email aspnc2012@gmail.com

This article was first published in the print and on-line versions of the Manila Bulletin.

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