I would like to talk about functioning and communicating.
People think that because I can talk and am labeled as higher functioning than, say, their nonverbal child who was diagnosed with “classic” autism, that I can always communicate and do it well.
Don’t get me wrong, I am happy I can talk and that I’ve learned sign language. I’m happy I can read and write and generally communicate well in writing.
But there are still times I struggle very hard to communicate because I can’t process information in a typical way. For example:
– If I’m in pain I can’t tell you what hurts. The pain interferes with my ability to process this information and communicate it. If you press me for information while I’m in pain, such as at the doctor office or hospital, I will become very frustrated and may melt down or hurt myself. I’m not trying to be difficult.
– If I am having a meltdown I cannot communicate. If you are there and you try to reason with me, yell at me, get near me, or touch me, I may hurt myself or you. My way of communicating this at the time is to scream at the top of my lungs or to injure myself. It’s like the logical part of my brain breaks down and I don’t even feel human while this is happening.
– If I am in a face to face interaction with you outside of my home, where there are overwhelming things like background noise or people moving around, I may shut down and not be able to communicate with you. At first I am distracted, and then I am frustrated by the distraction, and then I am reciting lines from movies in my head while biding my time until the conversation is over. At this point I may either be rambling about something that makes no sense to you or I may be completely silent.
– If I am in an otherwise stressful situation, or I am tired, or you have changed your haircut, or I can’t remember your name, or I am preoccupied thinking about the time my pet lizard died when I was 6, or I am hungry for french fries but not the kind this restaurant sells, I may not be able to communicate with you. I may have some words but they may not be the ones you want to hear.
These are just a few examples.
That is me. I’m not saying this is all autistic people.
The Internet can be deceiving I think. I probably seem like a totally functioning and awesome communicator if you read me online. But you are mostly only seeing me in writing. You are seeing the words I have thought about during times when I have the ability and energy. Maybe I’ve edited my comment 10 times, or changed it around in my head for a week. Other times I surprise myself and the words come easily. Sometimes I still don’t say what I mean, even on a good day. If you met me in person and tried to carry on a face to face conversation I’m not sure if you would recognize me.
This is me. I’m not saying this is all autistic people.
I’m writing this for a few reasons and none of them is for pity. One is so people can get to know me better. Another is so that anyone else who is like me who may think they’re alone will know it isn’t only them. But also it’s for parents, because I see so many with nonverbal kids who say they wish their kids could tell them where it hurts etc, and I understand where you’re coming from but I also know I think to myself that even if your child could talk he might still be like me.
I don’t think all people know that sometimes autistic people who are verbal can’t communicate these things either. Sometimes the kid who can use a device to communicate or who signs etc can’t communicate during a difficult time, and I see it. I see myself in that kid. I see my own autism in that kid. I see the parent who tries so hard get upset and the child who also tries so hard get more frustrated, and sometimes someone gets hurt. So I just wanted to give my perspective and hope maybe it helps someone to better understand.
This was very difficult for me to write. But I hope that in some small way it helps someone.