An Interview with Marc Rivera
By Marilee Emerson (Volume 2, Issue 24, Tuesday, June 11th, 2013)
From time to time, we are lucky enough to hear directly from individuals who live with Autism Spectrum Disorders. When these opportunities present themselves, it's wise to tune-in and really listen to to the perspectives they share.
I was fortunate enough to meet Marc Rivera by way of his book, Tears of Pain: My Life With Autism. After talking with Marc, I asked if he would share a little bit of himself with my readers. Here's a summary of that interview:
(ME) Hi Marc! Thank you for this interview. I write primarily for parents of children with disabilities, and am excited to share your perspective with my readers.
(ME) To get started, can you tell me the five most important things people need to know about you?
(MARC) I'm a good person. I have Autism, but that does not make me different, just special. I don't talk alot, but I still have felings. I love to write. I'm very shy, but I'm working on being mre outgoing so I don't feel so uncomfortable in certain situations.
(ME) I know you have a phenomenal memory. What is your earliest memory?
(MARC) When I was 5 years old, I remember going to daycare and having a hard time there. I was afraid something was going to happen to me. I didn't like being there by myself away from my family and I didn't like the food; people didn't understand me.
(ME) Can you describe how your memory works? How do you keep track of all of your experiences?
(MARC) During a conversation with someone, I have a little trouble remembering things discussed (unless the conversation is about something I can actually see). I often ask people to repeat slowly what they said so I can remember and respond. However, life experiences stay in my mind forever. I'm not sure how, but I can remember with accuracy old events, people and places....it's just there, like and old movie (almost). I can't really explain.
(ME) What might parents not know (but need to know) about their child with an autism spectrum disorder, from your perspecive? What might they be missing?
(MARC) Pay attention to how your child is trying to show he/she loves you. Recognize that you are the best teacher in your child's life.
(ME) What was the most helpful support your parents gave you when you were growing up?.
(MARC) Home school. It was great not having to deal with bullies, which I greatly needed. Although, sometimes, during my lessons, they sounded like my teachers in regular school. Sometimes I wished I had my own private teacher.
(ME) What do you wish your teachers had done better to support you?
(MARC) I wish they had recognized that I learned dirrerently from the other kids; maybe they could have assigned a "buddy" to help me through the day; or, praise me for the things I did well, instead of constant criticism; be less intimidating. An easier tone of voice would have helped me a lot.
(ME) I know you like writing better than speaking, and that journaling was an important outlet for you. Can you describe the differences between waht it's like to write your thoughts vs talking about your thoughts?
(MARC) When I write, I have time to organize my thoughts. I don't feel as if I'm being judged y what I write. I can say exactly what's on my mind. When I talk to people, although I know what I'm talking about, they sometimes have difficulty understanding me. They don't understand my way of thinking, and sometimes I misunderstand their ways of thinking. Also, in a conversation, it can become frustating to me when I have to decide what is the "correct" answer to a question, or what is acceptable or not. I'm often worried of making a mistake and not providing the facts exactly as they should be, although I do alot better when talking about something that interests me.
(ME) What was the most important coping skill you've had to learn?
(MARC) I had to learn to cope with all the anxiety due to bulling as a child. At times, I ran away from it, as if to leave it behind. I also cried alot. As an adult, I find myself sometimes avoiding social interactions. Writing has helped me a lot. I continue to work every day as different challenges come my way, but I have to say that I'm slowly adapting to my relationships with other people besides my family. The other day, I was able to step out of my comfort zone and invite my friend James, who also has Asperger's, to meet me for dinner at a local restaurant. It was the first time I did that. I had a great time, and it felt so normal.
One of my big hopes is to create a larger circle of friends so that I can do things like this more often.
(ME) What do you need to feel supported and comfortable in social situations?
(MARC) My family is my biggest support in social interactions. They understand that I have trouble reading certain things in people, like body language, facial expressions, and tone of voice. I always feel as if I need to adjust to these situations, but it would be nice if people took a little time to understand autistic people a little better.
(ME) Is there anything else you would like to share with my readers?
(MARC) I need people to accept me, and people like me, just the way we are, with understanding and tolerance.
Thank you Marc for sharing your perspective! I appreciate your willingness to share a part of your life wih others!
If you are interested in Marc's book, you can find it at www.virtualbookworm.com or www.amazon.com
Marilee Emerson is an educator who is passionate about helping families through challenging transitions. She helps parents of children with disabilities and learning differences know what they need to do next, so they can create better lives for their children and families. Her weekly newsletter Note from Marilee is full of practical tips and hepful perspectives. If you are ready to take your next best step for your child and family, sign up for a FREE subscription at www.mymarilee.com.
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