Doing It On My Own

By Barbara Protopapa

My name is Barbara Protopapa and I’m in my late thirties with high-functioning autism. My diagnosis came at age two when very little was known about autism.  My mom said that I was born with autism. Before and even after I was diganosed, my parents were told that I was and always would be profoundly mentally retarded and never speak or live a productive and independent life. Specifically, doctors told my parents to institutionalize me. My symptoms included being withdrawn and engaging in many repetitive behaviors such as flapping my hands, waving my hands in front of my eyes and getting into trances in which I continously stared out the window for a half-hour. I also banged my head and rocked back and forth; I did not talk or become toilet trained until I was almost five and had gastrointestinal problems as well.

Developmental problems also were a factor related to my autism. Shortly after my diagnosis my parents were told to put me on a diet consisting of only organic foods, fruits and vegtables and vitamins. There were also heavy metals in my system and it took a long time before I made any progress. I’m the sixth child of nine and my father worked over 105 hours a week. My mother was overwhelmed but both of my parents did the best they could for what they had to work with. There were few services or programs geared towards autism and to make matters worse my parents were not aware of them. For example, When I was 3, I was terminated from places like Easter Seals and the Potential Development Center (to name a few) because they felt they could not help me.

When I began attending school, there was nothing in place for individuals with autism. From Kindergarten through 12th grade I was placed in special education classes in five inner city schools. The programs were not effective because they were a haven for children with behavior, drug and alcohol problems. The teachers could not teach because they had to spend all of their time trying to control the other students. There were no books, learning materials, homework or even written assignments, and I realized I had to educate myself throughout those years, as well as after high school.

The lack of intervention continued to follow me after I graduated from high school in 1990. I took adult education, GED courses, and college prep courses to brush up on my academic skills. When I entered the job market, I found that I had to make more of an effort to be more professional and aware of work ethics, like what to do to get ahead in the market. I managed to get entry level temporary positions to gain experience and a work history. I’ve been employed since my early 20′s and with the money that I’ve earned from working; I was able to obtain my driver’s license, a car and an apartment. I also attended college and got B’s and C’s without tutoring or academic assistance. My employment history includes but is not limited to clerical work, retail, childcare and working for various cleaning companies. I am fully functioning and employed at The Rich Center for Autism and have a part-time cleaning job at a local law firm. I also attend and participate in many conferences and other autism related events. I also speak nationally and share my story and experiences with others, which I have been doing for several years.