Frontline Initiative Autism Spectrum Disorder

I have been asked countless times what got me into the field of intellectual and developmental disabilities (I/DD). My explanation always starts off with, “Well, I needed a job in college…” Responding to a newspaper ad was the catalyst for a career that is both personally meaningful and professionally fulfilling. In hopes that other Direct Support Professionals (DSPs) will find my journey relatable, I will share my story.

I took a psychology course on learning and behavior. We applied the basic principles of behavioral therapy to pigeons. Over the course of the semester, my small group successfully taught our pigeon to ‘kick’ a ping-pong ball through a makeshift goalpost. I was fascinated! Later I saw the ad: Wanted: Living Skills Instructor to teach individuals with autism valuable life skills. I grew up with various disabilities on both sides of my family and I felt a strong calling to enter a helping profession. It seemed like it might be an ok fit; I might even learn about behavioral therapy techniques in the ‘real world’. I applied and got the job.

The position was at a group home. My role was to work with three men whose autism was considered significantly challenging. Jed, Nate, and James* were only about a year or two older than me. Jed spoke very few words; what he did verbalize was echolalic in nature. Jed also had diagnoses of obsessive-compulsive disorder, anxiety disorder, and depression. Nate was nonverbal, did not reliably use the toilet, and had a preference for not wearing clothes. Nate had frequent instances of self-injurious behavior (SIB). James had some words, and had a special interest in laminated magazine pictures. James also had epilepsy and wore a helmet.

I still wasn’t clear what autism was. I certainly wasn’t prepared for what happened on my first day. Nate had several toileting accidents and frequent and intense SIBs, James had a grand mal seizure and had slapped a DSP, and Jed sat on the couch for three hours perseverating on pizza. What had I signed up for? How was I supposed to teach the men ‘valuable life skills’?? I didn’t understand their behaviors and I wasn’t sure how to communicate with them. This was nothing like working with pigeons. After leaving my first training shift, I remember thinking, “I am never going back there.”

But something had happened. Something that, to this day, I can’t quite put into words. I had been changed. I went back for a second day, and a third, and a fourth. I worked there almost three years until I moved out of state.

As I got to know Jed, James, and Nate, I learned their interests and things they liked to do. Jed was a coffee guy and enjoyed taking showers in freezing cold water. James loved singing songs and purposefully calling DSPs by the wrong names. Nate had an amazing sense of balance and enjoyed the sensation of masking tape being ripped off of his skin. In partnership with my supervisor, I began to write programs to promote positive behavior and help increase their independence. Just like breaking down the steps to teach a pigeon to kick a ball, I found that any skill could be broken down to very small, manageable steps. Who would have guessed that making coffee is really a 25-step process? Or that laminating pictures could be broken down to 20 different mini-tasks?

I often look back and think about how my initial experiences with individuals with autism were scary, confusing, and difficult at times. But I also found such joy and fulfillment in my work. Yes, I think I taught valuable life skills to Jed, James, and Nate. But I also learned to be open to the valuable life skills I would learn from them. Yes, I think I helped shaped their behavior and supported their independence. But, more importantly, my experiences with Jed, James, and Nate helped shaped the person and professional I have become. Patience, humility, person-centered thinking and acting, appreciation for diversity, and respect for humankind – all life skills that I didn’t expect to learn by responding to a newspaper ad.

The author would like to remain anonymous, and wishes to thank the Frontline Initiative editorial staff for giving this story a platform on which to be shared.

*FI Editorial Note: The names used in this story have been changed to protect confidentiality.