Feature Issue on Self Direction

I was diagnosed with autism at a really young age, like 2 or 3, and was put into a lot of therapies: occupational therapy, music therapy, sound therapy, all sorts of integrative therapies. But I just thought these therapies were play because my parents didn’t tell me I had an autism diagnosis. During eighth grade, my best friend moved away, and I was starting to really struggle socially, and so they finally told me. I was furious at first, but now I think that if they had told me early on, I might not have learned the skills I needed to function in the neurotypical world, which still aid me today.

The author, at a recent celebration.

When I was in fifth grade, I accidentally walked into the wrong room at the Jewish Community Center, and they were auditioning for The Music Man. They asked me to sing and read lines and I got a leading role. I did that show and it was the best thing I had ever done and knew it was what I wanted to do for the rest of my life. So, I went to a performing arts high school in my hometown, Houston, and it was the most diversity I had ever experienced, people of different colors, gay, straight, trans. I had never seen that before and it was mind opening and a great education. I learned about balancing the arts and my passion with schoolwork.

After graduating from Molloy University with a bachelor of fine arts degree, I joined EPIC Players, a nonprofit theater company in Brooklyn, New York. EPIC is open to all types of artists and spotlights neurodiverse talent, and this was when I started being open about my autism for the first time after years of hiding it. It was a great place to meet other people with autism and I started doing shows and eventually choreographed and assisted with classes and became a dance teacher. As a staff member, I saw an email from the parent of an EPIC player who was looking for a direct support professional. I answered the email, got an interview, and when I said I was autistic, they said “Oh, amazing!”

This was two years ago, and I had no idea then what I was doing, but I learned quickly I had a knack for this work. I’ve now worked with eight clients, and five are ongoing clients today. I’ve supported young adults with social skills, cleaning, cooking safety skills, and other tasks.

Social support is what I love the most. I feel I’m pretty good at that, as someone with autism who understands the struggle and yet is pretty outgoing. Right now, I’m helping someone plan a birthday celebration, so I’m supporting him as he learns to book a restaurant, split the check, and invite people.

All of my clients self-direct, and I go through their financial intermediaries’ processes for onboarding. This includes training, background checks, fingerprinting, credit checks, and other steps. I’ve onboarded with four different intermediaries (two clients use the same one). This is a process, and it takes a few months. Recently, I turned down a new client because it would have meant onboarding with yet another intermediary.

When I clock in and clock out, I’m required to check off things we did in the session, but the options often don’t cover fully what we do. If something isn’t listed in the life plan, that’s a problem, but the goals that are set forth from the agency aren’t reflecting what I feel like the person wants to do. At times I’ve spoken to intermediaries or parents who are legal guardians of the person I support about broadening these plans to better fit what the person wants and to give me more options for varying activities. It can feel a little intimidating to advocate for this, but I do it because I don't want to feel alone in making the person's life plan work.

Overall, though, I love the freedom that self-direction gives the people I support. They have independence, and from my side, I don’t have people telling me what to do all the time, either.

I was recently “fired” by a client I’d worked with for a year or so. The reason they gave was that he was now able to go to social events by himself. They said that with what I’ve taught him, he can go to these events by himself that he wasn’t able to attend before. He’s hanging out with his friends and going to events at the JCC.

I now realize I didn’t get fired. He graduated.