What it’s like to live with autism: 
a message to volunteers with GSA

Andrew is a man in his 30s who types to talk. He tells us that friends are the most important thing in his life.

1. Every person with autism is unique…but we have some things in common. Autism spectrum disorders can be very hard to live with, but many other people find autism very interesting to learn about. The word "autism" can spell interesting qualities: 

A  Always
U  Unique
T  Totally
I   Intriguing
S  Sometimes
M  Mysterious

A  Awesome
U  Unique
T  Talented
I  Intelligent
S  Sensitive
M  Misunderstood

Volunteer friends have said that getting to know us has enriched their lives in unique ways.

2. People with autism usually have some difficulties with expressive communication. It might look as if we don’t think or have feelings. But that’s a big and sad mistake. I may not speak with my voice but I have things to say. I use signs, a computer, supported typing and gestures.  If people don’t understand, I either shut off from them or if it’s serious, I may act out. Give us a few seconds to process your greeting, and wait for the big smile. Prepare us with information about what is going to happen and we’ll do our very best. 

3. People with autism find social communication and interaction hard. It might look as if we don’t want friends. But we want and need friends more than anything else in the world. I say “a friend understands, helps and is nice, and likes sharing part of her/his life with me. I like to be the same for my friends.” As I don’t speak with my voice, it helps me to have my dog Amy with me as my "friendmaker."

4. People with autism usually have special hypersensitivities that should be considered in planning activities. We may feel and react to overload of all the senses—sight, sound, touch, taste, smell—and also the sense of our bodies in space and our sense of balance. Some of us also react to air temperature, pressure and quality. Some of us are highly sensitive to certain foods or react toxically to medications.  We are also very sensitive to what others are thinking about us or to other people’s anxieties and worries. We don’t like surprises and change. Sometimes the overload from our sense may be too much for us to control—we may have a meltdown or a shutdown. 

5. People with autism very much want to experience things in the company of good friends. We will try our best.  For example, I like to take part in the Hillside Music Festival at Guelph Lake in the summer. There are thousands of people, it’s hot and humid, there are lots of foods and drinks I can’t have, and some of the music is very loud and strange. But I have the company of some friends, I hold on to Amy, and I focus on the music. 

6. My advice for new friends of people with autism:
- look for and listen deeply to the real person, and believe in her or him
- plan carefully for any activities, and prepare for them with social stories and even rehearsals
- give us a little more time to process what you say or other information coming in through our senses

Give a little time and make a big difference!


 


Check the Ontario Adult Autism Research and Support Network’s website for more information and opportunities for volunteering at  OAARSN  Click on the Communications button on the main page, then on Volunteering. Or click directly on:
Why Volunteer? - Catherine Ferguson's account of volunteering
Objectives of Volunteering with GSA
Print or download a volunteer application form 
Volunteers needed! - current volunteer opportunities with GSA