Growing up with Plato
By Regina Sullivan
Sibling Leadership Network
Many people ask me what it was like growing up with a brother with classic autism. Well, I tell them, “When I was younger the world was a very different place. Back then, very few people knew about autism and only a handful had any clue on how to treat it.” I guess you could say that my family was fortunate because we were referred to the TEACH center in North Carolina, and the staff diagnosed my brother with classic autism at the age of three. Plato would go to the program three to four times a week and get special training and services. He went to the center for only two years before my family moved to Alabama but we credit the innovative treatments from the TEACCH program for the progress my brother made during the first 10 years of his life.
The Perfect Sibling
Growing up with Plato, I did not notice anything wrong because he was the perfect sibling to me. He did everything his bossy little sister said, never fussed at me, and would let me hop in his bed when I got scared. I thought he was wonderful and brave because nothing ever scared him, and when my father gave him a spanking, he never cried. So, you could imagine a younger sibling witnessing this behavior would think her big brother was just cool. We would play for hours together, and (even though he did not talk until he was six) we never had a problem communicating. I did not notice that my big brother was different from other kids until fifth grade. My mother tried to explain Autism to me but her explanation went over my head. So, I asked my brother about Autism and I liked his explanation much better. He told me that,” Autism makes you feel like an alien on a strange planet.” So, that was the explanation I used whenever someone would ask me about Autism.
“Growing up with Plato, I did not notice anything wrong because he was the perfect sibling to me. He did everything his bossy little sister said, never fussed at me, and would let me hop in his bed when I got scared.”
Nowadays, it is strange to hear so many people talking about Autism and realize that 30 years ago nobody even knew how to pronounce the word. In a way, I feel a little guilty because we could have done more to educate the public about the condition but my family chose to spend their time trying to make him appear “normal”. The older I get the more I realize that “normal” does not exist. There is a gray zone that people with Autism can fall into where they deal so well with their disability that people stop wanting to help and instead criticize, alienate, bully, or mislabel. Plato fell into that grey zone and as a result lost 12 years of his adult life dealing with medical professionals that knew nothing about Autism. I would like to see more effort put into address this gray zone and filing in the gaps for people with Autism. It is hard getting help when no one sees your disability immediately.
Filling the Gap
The Sibling Leadership Network is trying to fill in the gap of support for many individuals with developmental disabilities transitioning from parental care to life after parental care. People forget that developmental disabilities are for a lifetime and that with advancements in healthcare everyone (including people with disabilities) is living longer. Adult siblings play a huge role in filling that transition of care, however they need to be well prepared and equipped with the resources and information available to them. Please visit the www.siblingleadership.org to find out more information about this transition and this organization.
Regina Sullivan was raised in Alabama. She is the middle child of three, with the oldest sibling, Plato, diagnosed with Autism at the age of four. She is presently the mother of two and wife of Joseph Sullivan. She is also a captain in the Air National Guard, a practicing Doctor of Optometry, and pursing her Master of Public Health at Georgia State University. As a graduate research assistant at Georgia State University, she works for the Center of Leadership in Disability (CLD), which is a division of the Center for Healthy Development.
The Georgia Sibling Connection is a chapter of the Sibling Leadership Network and supported by the CLD. The mission of the GSC is to provide adult siblings of individuals with developmental disabilities information they need to support their sibling’s desire to live the most independent and fulfilling life possible, serve as advocate or voice for their sibling, and let them know that we understand the struggles they face.