This is my story. Tasting my great joy in my work heals my hurting heart in the end. Yes, I am a person with autism. Guy hoping to change the way autism is viewed and experienced in Sri Lanka.
My need to help people like me brought me back to Sri Lanka. My family and I founded an organization. I named it E.A.S.E., one of my favorite words. E.A.S.E. stands for Educate, Advocate, Support, Empower. I felt I could ease the lives of people with autism by educating, advocating, supporting and empowering. Telling you I love my work.
Understanding the difficulties of families, we provide our services free of charge. Our goal is to help people with disabilities create stimulating, productive lives. Being a non-verbal person, I know well the plight of speechlessness. I broke free from my silent abyss at eighteen, thanks to Facilitated Communication Training (FCT) that freed my voice and saved my sanity. Giddy with relief at finally being able to demonstrate my intelligence, I found talking about autism’s hold on me very useful to others as well as to me. (I think I am still autistic, but much less so since I can communicate with others.) I loved presenting at conferences because I was being useful.
In my heart, I must have wanted to join but I was very likely not ready. Bullying mom I wanted to move to Syracuse, so I could be near the FC Institute. Bilking autism would just be easier in Syracuse. I sighed with relief when my parents finally agreed. Grappling with independent typing got easier and I started presenting at training workshops more often. The gist of the story is, my life changed completely. I, who was once considered profoundly retarded, became a college student who ceased to be retarded. Believe it or not, I was never retarded.
Drinking up intense FC training, my mom and I got ready for our next step: moving back to Sri Lanka to introduce FC to non-verbal people here. I wanted to create a productive, stimulating life for myself until mom convinced me that being limited to myself was not the way. The truth is, I was very reluctant to leave Syracuse. Helping others was mom’s lilting life plan. Bilking autism was mine.
Finally, in October of 2006, we moved back to our house here in Sri Lanka. Cringing inside I went along to help others create productive, stimulating lives. Uplifting other non-verbal people with autism I found has filled my life with joy. In fact, it is not likely that I will ever give up this work. Mom is right: true joy comes from helping others.
E.A.S.E. (Educate, Advocate, Support, Empower)
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.