This guest blog is from Jeremy Sicile-Kira, a youth leader for the Autistic Global Initative. The blog post was originally shared via The Autism Research Institute in conjunction with the launch of the AGI Residential/Daily Living Support Course. The course provides best and evidence-based practices for those who support the daily-living needs of transition aged students, young adults and adults with autism and related disabilities.
"My need for support is the most important aspect of my life. Hard to imagine, but I need help in all areas of my life. The importance of finding the right support persons cannot be over emphasized. Imagine what it is like to need a support person in your home all the time. It is hard to have people around constantly. I have to choose my support staff carefully.
My search for support staff begins with looking at the needs I have and the qualities I am looking for in a support person.
The first thing I do is make a list of what I specifically need and want in a support staff. Some of the words to describe the qualities I look for are: understanding, happy, kind, flexible, willing to learn, having a sense of humor, able to make good decisions, positive, smart, energetic, enthusiastic, calm, under 30, reliable, and Ted-like. I feel Ted, a support person I have now, has those qualities. Happy people are essential to my well being because life is greatly difficult when you dearly have a body like mine, that does not respond to your wishes. Belief in my ability to frankly realize my dreams is important. I need to feel that the support person feels I am capable. Happy people are important to my keeping a good attitude.
During the interview, truly the most important aspect is the candidate’s ability to listen to what my needs are as described by me. They must be able to understand what my mom tells them that I have said I want in terms of qualities. The most important quality I look for is the ability to learn how to be a good communication partner in supporting my style of communication. I have motor differences and sensory integration challenges that make it hard for me to initiate and get nicely moving and they need the ability to understand about this. As I described in my book, A Full Life with Autism in the chapter about supports, I get nervous in situations where I do not feel safe.
The process of interviewing happens over a few days to make sure we are a good fit for each other. I truly ask questions that are important to me.
- I ask, “are you in a relationship?” because I want to know if they have healthy relationships with other people.
- I ask “how long are you planning to live in San Diego?” because I like to have the same staff person for a long time and I spend a lot of time training.
- I ask about experience, especially that with someone who is nonverbal, because I like to know if they have some idea of what I might be like.
- I ask why they are in San Diego because I truly prefer people who are from here because they have a life here and usually will stay here.
- I ask them how they respond to frustrating situations because sometimes I get hyper or they might see me act weird and will have to be patient.
- The ability to have truly calm people who are lively in their thinking is dearly important. For example: when I interviewed Nikki I could feel her calmness. When I interviewed Matt I felt his happiness.
My needs for supports is the kind way my nice God has led me to help me meet nice people. My best friends are my support staff. My life would be hopeless without them. Choosing staff is like choosing friends because kindly great staff and great friends are what makes life worth living. I need to feel that they are interested in me as a real person and not a client."
Jeremy is a writer, an artist and advocate for the autism community. His commencement speech has inspired many. He is probably the first non-verbal person with autism to have his own column in his high school newspaper, and to be a staff writer on his college newspaper. One of his articles on the impact of California budget cuts was printed out by disability lobbyists and handed to state legislators while they were preparing to vote on the budget. Recently, Jeremy was appointed Autism Research Institute’s Youth Representative to the United Nation- another first! Jeremy also serves as the California Youth Leader for the Autistic Global Initiative, a project of the Autism Research Institute, and as a Youth Advisor to the California Employment Consortium for Youth (CECY). Jeremy, was highlighted on MTV’s documentary series True Life, in the episode, “I Have Autism” which was the recipient of a 2007 Voice Award. Jeremy’s attempts to communicate using assistive technology in order to make friends was considered the second most inspirational moment out of nearly 300 True Life Episodes in 2009. Jeremy’s story has been covered in national and media, including the Newsweek cover story “Growing up with Autism.” In 2006, Jeremy was honored with a Local Autism Hero Award from Cure Autism Now (CAN). In 2012 he co-authored a book, A Full Life With Autism with his mother, Chantal Sicile-Kira (pictured above, with Jeremy).