Living with Autism–Brendan’s Thoughts
We sat together on my bed at this time last year, Brendan and I. Every night for the whole month of April somehow he managed to pull himself away from his Kindle and his video games and talk to me…really talk to me.
For those of you who know and love someone with Autism, you know just how rare it is to have a conversation with someone who has an autism spectrum disorder. Even those who, like my son, are highly verbal, reciprocal and social communication are real struggles. Brendan much prefers to quote videos to me or rattle off facts about whatever his latest special interest is.
But Brendan agreed to help me and others understand better what autism is really like. And so as we sat together on my bed, night after night, he let me ask questions and he did his best to answer them.
While we know that each person with autism is different and has their own exceptionalities, there are some things that seem to be shared experiences. And those were the things we talked about.
The following is a Q & A that took place between Bonnie Zampino and her son Brendan.
Bonnie: A lot of people with autism don’t seem to like looking other people in the eyes. I know that you don’t always like to do that. Can you explain why?
Brendan : Looking into someone’s eyes is like looking into the sun. It hurts. There are some eyes that I like, like my moms and some people that I know. But mostly eyes hurt and I don’t like looking into them.
Bonnie: I notice that you always scream and run away when I turn on the vacuum cleaner and that sometimes at restaurants and at Walmart you will put your hands over your ears. I remember last summer when we went to Hershey Park you were really bothered by the people and the noise. What happens to you when things are loud?
Brendan: Sometimes noise suddenly can become so loud that it feels like someone is screaming right in my ear. It hurts…like something is touching my eardrums and banging against my head. It makes me want to run straight out of the school and hide in the bushes.
Bonnie: I am always amazed at how you are able to remember a whole video or TV show after only watching it once! But then you always want to tell me the whole thing along with everyone else you see. Why do you do that?
Brendan: When I watch something, I remember all of the words. Sometimes days later, something will remind me and then I keep thinking about it and I see the image in my mind and I HAVE to tell someone or it will make me feel crazy. I have to get it all out so it will go out of my brain. Every day after school I go in the backyard to talk out everything that is stuck in my brain and I act it out too. I like to do that in private.
Bonnie: A lot of people with autism like to spin around and they also like to watch things spin. Can you explain why that is?
Brendan: I love to watch things spin, like fans or wheels. And I like to spin too because I am fascinated with circles and the patterns that spinning things make. I can spend a long time just watching, completely absorbed in watching the object moving around in a pattern.
I also like to spin around because I like the way my body feels when I’m spinning. It feels like the upper part of your body isn’t really even on the ground…like you’re up in the air. That feels cool and interesting.
When I watch things spin, it’s like an optical allusion. It doesn’t make me feel better if I’m feeling bad; it’s just really interesting.
Bonnie: You really love making sure things happen when they are supposed to, like having dinner at 6:00 p.m. and making sure you are always in bed exactly at bedtime. When things don’t happen like they are supposed to, it can make you feel pretty upset. Why is that?
Brendan: In school, I have the class schedule in my binder. I know exactly what time every class ends. I have to watch the clock and I get very nervous when it gets near the time for a class to be over. I know that I have to get all my things together and get to my next class and I am very worried that I will be late. Schedules are good because I always know what’s going to happen. If I don’t know then I get worried because the next thing might be too far away or too soon. I like to have a specific time to go to bed because then I know how much time I have to do things and I can plan everything out. If I didn’t know it would surprise me and I might not be able to do everything that I need and want to do.
Do you know someone who is living with Autism? What thoughts or perspectives would you like to share with us?
Bonnie Zampino is the founder of A Special Space, Inc., a non-profit organization providing a therapeutic child development center that gives children on the autism spectrum and other special needs children an environment tailored to their special sensory, social, educational, and recreational needs alongside typically functioning peer models. Bonnie is also the proud parent of an amazing son who happens to have high-functioning autism.