A space where adults with autism/ASD share experiences and opinions...
Matthew's Helpful Hints to Helpers
My Philosophy of Support
I don't need “therapeutic support staff.” I'm not sure people with autism need therapists as a rule. They need helpers who will learn to treat people with autism as competent with good minds and some strange sensory experiences and problems communicating. Some of us melt down when our sensory system is overwhelmed. But if our daily round is predictable and has components such as work and friends, we do better. Because we have trouble making ourselves understood, people back off or call in the therapists when we mostly need human contact and practical help managing the flow of sensation and being in touch communicatively. Seems to me this is not asking a lot. Dance with me. You'll enjoy the party.
Things to Know About Me:
Many [staff] are well meaning but lack an understanding of my autism. For instance sometimes they play the TV without asking me or my housemates what we want to watch if at all. They don't appreciate my need for quiet and low light levels. They need to take more time to let me process things like requests and options and questions. I often need 30 seconds to process answers. They need to practice patience. Gets my goat when the staff change the schedule without consulting me first even if the change is unavoidable. Decent respect for me requires support staff to communicate with me not at me.
Staff should learn to FC with me and write notes and look for my signing. [When we are out in public] they should introduce themselves as my helpers and not just talk without acknowledging my presence and knowledge and opinions. They should help me meet people the way a deaf interpreter helps a non hearing person interact with those who hear. I don't mind prompts and discussion after an encounter about my social graces.
You can be most helpful to me by prepping me [before hand] and coaching me after a social encounter. Things You May Wonder About I am given to banging my head with my fist when people insist I do something before I am quite ready. Frequently I do it because it's noisy and I feel pressured. Feels kind of relief-like to do it when my brain is on overload. Wearing ear protectors or turning lights down helps me avoid head banging. Staff need to give me time to respond to requests or changes in my expectations. They need to have a relationship of consulting or negotiating since I am an adult. I hear all too well. I like a diet of quiet time, music by Mozart to just chill with, other classical composers to keep me at a mellow level, not a lot of multiple conversations going on around me and just a couple hours of TV a day.
Best of all I love conversation with me. That would be a great diet. I like magazines to read and time to think. I can enjoy a group or party as long as I can move in and out as my energy level falls and rises with the stimulation. Groups give me energy and I feel excited but too much and I have to take a break.
Good food is such fine stimulation but I sometimes don't feel my limit and need outside limits. I am impulsive and I don't know yet how to manage it. I don't want anyone to stop my self-stimulating behaviors. I don't bother others and [staff] can help best by maintaining a calm environment. The whole discussion [of self-stimulating behaviors] is mostly insulting. Some people whistle or sing to themselves or chew gum or talk to themselves. So I hum or rock. So what? Give me a break!
My goals are to find a job, girlfriend, and new friends in my neighborhood. My dream is to type independently so I can write poetry and a book telling my life story. Right now I cope by great effort. l try to get through days by keeping my mind on my hopes for a job. I fantasize about going to work every day and meeting new friends. I imagine meeting a woman who enjoys talking to me and doesn't mind keeping silent when I type. Only hope keeps me going. It is cooling and energizing at the same time.
Matthew T. Leonard March 2005