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Living with Autism
I can only write about my experiences, my thoughts, and my perspective. I can't write about what it feels like to be someone else, not even another autistic. So, please remember that these are my personal experiences, although I've tried to mention traits that other autistics might share with me.
When I'm interested in something, I might spend so much time immersed in it that I forget to eat or sleep! Many autistics share this characteristic with me, becoming obsessed with what the world might see as unimportant things. I've been asked what it feels like to be immersed in an obsession. It is absolutely wonderful! Time seems to stop, and nothing could bother me while I'm pursuing my "obsession". It doesn't drain me, but it energizes me. I wouldn't give up these "obsessions" for anything. I ask the non-autistics reading this to decide for themselves if there is a problem with someone just because they have an intense passion for something that most people don't enjoy. I wonder how George Washington Carver would have responded if someone told him to quit obsessing over the peanut!
The subject of an obsession can be anything for an autistic. Some of my obsessions include aviation, software engineering, underground tunnels, and mass transit. Do most people consider thinking about mass transit or walking through an underground tunnel to be an "absolutely wonderful" experience? Probably not, but I've learned there is nothing wrong with taking pleasure in these things! If anything, many non-autistics need to spend some time enjoying a simple pleasure.
Non-autistic society has many, many unwritten rules. These rules are very pervasive; many non-autistics sincerely believe they communicate very directly, unambiguously, and honestly. As an autistic, I must disagree. While I've learned - by rote - what some of the unwritten rules are, I'll never understand the more complicated ones. For example, I usually don't notice body language. When I do notice it, I have to expend a great deal of energy to try to figure out what it is saying. At other times, I'll hear someone tell me something like, "Call me anytime!" When I hear this, I might not realize that there is an unwritten rule that you don't call people after they go to bed! Of course, this is a rule I now understand, but I find out about new rules every day. Autistics need additional understanding when we violate "socially acceptable behavior." We probably don't even realize what we did wrong, so rather than getting upset at us, feel free to ask what we were trying to communicate or if we realize that there is an unwritten rule about it.
I tend to speak my mind, without always following the unwritten rules that say I should criticize something using words which don't really seem to say what I am thinking. I realize that many people assume that criticism of their work is the same as criticism of them, but I don't. I don't get upset if someone tells me that I did a bad job writing a piece of software. I may have. I will want to know why they thought that, though, so that I can learn and improve (this is often misinterpreted as becoming defensive when it actually has more to do with vulnerability than defensiveness!). Because this is the way I want to be treated, it is often the way I treat others. When I say that I don't like some of your work, I'm not saying that I don't like you. I'm also not saying that I think you are stupid, lazy, or a poor craftsman. What I am saying is that I see an obvious flaw in something you did. I'm trying to understand how to be less "rude" or "abrasive" (words others have used to describe my criticism of their work), but it is something that I still don't understand - especially since I actually want to be criticized in this way!
A trait of autism that I experience is a somewhat lacking "sensory filter". When I see, hear, feel, smell, or taste something, I experience all of these senses simultaneously. The typical non-autistic or NT (neuro-typical) processes these things through a filter which removes the information that isn't needed. My personal experience with this indicates that at least this author doesn't have a normal sensory filter, and I suspect that I'm not alone. When I enter a busy scene - especially if multiple senses are present or there is a lot of loud noise, flashing lights, and people bumping into me, I will experience this sensory overload. Simply put, my brain is trying to analyze everything that is going on, without bothering to pick out the truly important details (like the person right in front of me who is trying to talk to me). As a result of this, I will often want to retreat or go back to somewhere quiet and peaceful again. I'll never understand how non-autistics can enjoy loud parties, dances, or meetings.
The only way I can explain this to a non-autistic is to have them go into a room, turn on a stereo (loud!), TV (also loud), open up the blinds, turn on a strobe light, and then try to talk on the telephone. Many autistics live like this all the time (so, please, cut us some slack when we ask you to repeat yourself for the 5th time in a loud room!).
Look at Me!
I've often been told, "look me in the eye!" Often, it was well-meaning teachers while I was growing up, who thought that looking someone in the eye would somehow make me better able to communicate. What they didn't understand was that the face gives off a tremendous amount of information. The eyes are the worst part of the face for me, because they give off even more information than most of the face. When I look someone in the eyes, I can't concentrate as much on what they are saying. When I look at the floor, a wall, or (with people that are willing to accept who I am) close my eyes, I'm not trying to communicate that I'm not listening. Rather, I'm listening very deeply! If I want to hear someone's words, I have to find a way to not be distracted by other sights and sounds! So, please, next time I watch a wall while you talk, please remember that I may be honoring you by listening so intensively! If you're ever concerned that I'm not listening, just ask. I won't get offended!
Many autistics process the signals their senses are sending in unusual ways. Some have reported that they taste smells, hear touches, and see sounds sometimes. While I have never experienced this (not quite true - I can see flashes of lightning with certain touches or sounds), I often find that what I think I'm experiencing is different than what is actually happening. Most commonly, I'll have a hard time determining if I am hot or cold - I've often put a sweater on to find that it only makes my feeling of being cold worse. In addition to not knowing if I am hot or cold, I sometimes can't figure out what direction a sound is coming from. Someone might be on my right side, trying to get my attention, yet I'll sometimes look to the left.
Some of my friends have told me that I'm always telling them that I'm tired! Autism can explain much of this, though. Autistics often have a combination of sensitive and insensitive senses. A given sense may be very sensitive at one time and very insensitive at another. When the senses are insensitive, I'll also want to stimulate that sense myself. For example, at night, I'll often "wiggle" one of my legs. I don't know exactly what this does, but I know I usually can't get to sleep if I try to hold it still. But sometimes even this movement will keep me awake. I have to sleep under a heavy blanket, preferably fully clothed - to further stimulate my sense of touch. In addition to this, my hearing becomes over-sensitized at night. I hear every little thing - the fridge in the next room, my neighbor closing his door, the wind, even the leaves outside my window. Any one of these things could wake me up. I probably wake up at least two times during a normal, restful night. Simply put, it's hard work to go to sleep!
What Are You Feeling?
The face conveys a lot to people who can read it. Let me try to explain how I see faces, and how I determine what they are saying. You might then be able to better understand other autistics. When I see someone, I might notice that they aren't smiling. I think to myself (yes, this is conscious thought), "he isn't smiling. Why not? Is he unhappy?" I then recall that people don't smile when they are sad or when they are mad. I might then look for a red color in his face. If I see that, he is probably mad - but, maybe, he is just concentrating really hard. Now, most people wouldn't go through all this work. They would know instantly if the person was mad or concentrating. I don't, though. I've never understood why people don't just tell others how they feel.
Who Are You?
I don't recognize faces. Instead, I use other cues to tell me who someone is. For example, I'll remember if they are bald or not, wear glasses, what type of clothing they wear, etc. But, I won't recognize them by their face. I'll often meet someone that I know I should know, but not be able to place them in my mind because they are wearing different clothes or cut their hair. At one point, when visiting my parents, I didn't recognize my dad when he came to the airport to pick me up. He had cut his hair and trimmed his beard.
Please Don't Touch Me
While some autistics have a greater aversion to touch than I do (some report that it is painful when someone else touches them), I don't exactly appreciate people touching me! It seems that some people think that they have to come up to me and hug me, without giving me any advance notice so that I might be able to brace myself. Please don't hug me, at least not unless you ask if you can do it first (and, be warned, I might say no). Someone grabbing or hugging me - especially when I don't expect it - can overload my senses.
Sometimes autistics need to be left alone, so that we can calm our minds and bodies. We'll often retreat when we're experiencing sensory overload or when we are under a lot of stress. This behavior sometimes seems strange to a NT, as it seems that we are running away from the people who are willing to love and support us. As an autistic, I recognize my need for friends to support me. However, because I am autistic, interaction with even my closest friends and family can tax my reserves - especially when I'm under a lot of stress. If you see me push you away in a stressful time, please realize that I'm not doing it because you did something wrong. I sometimes push my friends away when I need that quiet solitude to regain my senses. Let me know you are available, and that you care, but please don't push the issue if I am unable to interact at that moment. Don't worry, I'll come to you when I'm recharged - I still need your support, for I get lonely and need wise advice just like you do.
I am not sick! Yes, I have many difficulties that I have to deal with, but I also experience incredible joy and success. I wouldn't be the same person if I was a neuro-typical, nor do I think that I necessarily want to be that person. I like who I am, although I do wish that society would allow people to be who they are, even if it is different than them. I believe that, in heaven, we will one day rejoice with many different brothers & sisters - even the ones that are different.
As a Christian, I would prefer that people wouldn't pray for me to be "healed" from autism, either. When I hear this, I hear, "I will be praying that you will become a different person." I am a whole person. Autism is a key part of who I am. Asking me to want to give up that part would be like me asking you to give up a sense of humor! Without the autism, I would be less whole, not more whole.