When you meet someone who rocks and squeals but does not speak, what’s your first thought?
- Is it, “Oh, okay, I guess this person is not able to speak, so I’m going to do my best to find a way to communicate.
- Or is it, “Oh, that poor soul. I bet he doesn’t even know what’s happening. I’ll ask his nearby parent if he’s difficult to manage at home,” because surely he doesn’t understand what you’re saying.
When most people, including parents and professionals, see an autistic person who doesn’t speak, I think there is some unconscious thought process. In your world, thought and speech are so closely linked that it feels like the same thing. But many autistic people have a disconnect−their brains think just fine, but their mouths aren’t getting the message. Autism is less of a cognitive problem than it is a motor problem for some.
If you’re at home, trying to find your sister and the baby when he should be napping, what do you do on your search?
- Do you walk quietly and peek in each bedroom except the one that’s closed−the one to the baby’s room?
- Or do you burst right on through the door and scare the pants of your sister and wake up the baby?
Like a mouth not getting the messages, sometimes the body doesn’t go when we say go or stop when we say stop. I knew very well the baby should be sleeping, and I knew I couldn’t find my sister. Downstairs was simple, but when I got upstairs, my body launched me into the routine I always do when I arrive at my parents’ house, which is first to open the drawers and fridge in the kitchen (even if I just ate). Then I go upstairs and check to see if anything has been changed. There are five bedrooms, so I start at my room at the end and go to each room. The nursery door was closed, and as I walked to it, I told my body to stop, but it didn’t stop. It grabbed that doorknob and I burst into the quiet, sleepy room. My sister was not pleased. I kept saying, I didn’t mean to, I didn’t want to! An autistic body doesn’t always move or stop at will.
When you see or meet an autistic person who is communicating verbally, and then later see the same person typing to communicate, do you think…
- That he is perfectly capable of speech and therefore shouldn’t or doesn’t need to type?
- Or do you know that having words is not access to communication?
I was on the phone with my mom tonight, and I said four words that made a sentence. Until that moment, I had never put those four words in that order. 27 years is a very long time to live without ever communicating this to someone else: It hurts my feelings. I do very well with facts, lists, criteria…It’s like a recording that you start and then it runs along by itself until you stop it. Much of my advocacy was first typed, and over time, became bits and pieces I can recite (try asking me the same thing in a few months and getting a nearly-identical answer!). When I’m speaking to a group, I always type my presentation and read from it. It’s not fair for people to sit in silence while I spend 90 seconds finding a word and then start to get frustrated and then mad and, well, we all know how those things go. I also type before meeting new doctors, too, so they get the background they need and also get to know me as a person and what they might see and what it means. One thing that has been crucial to progress has been my mom’s willingness to text and email with me! It took some years to get that to happen, but since it has, my family has gotten to know a different Lydia, one who feels and understands and thinks about others much more and the world in far greater depth. My fluency is very much affected by sensory things going on around me, and the far end is losing my ability to communicate with speech, but that takes quite a load. When we’re out, I’m more often in the middle, but all the words in the world about cats or autism or society’s horrible grasp on grammar are not going to be much help if I’m upset or angry.
If a young adult is coloring with a favorite figurine in the other hand, and you want to ask about the person’s plans after high school, do you…
- Ask the parent, assuming the autistic adult is more like a child, and not developmentally capable?
- Or do you ask the person directly as you would any other young adult, then let that person ask for help from the parent if he decides he wants it?
There are some adults on the spectrum who have traits that meet the criteria but whose chronological age and stage of life are much the same… some have a overall delay in every area…and others, like me, are all over the place. I am still the parented one, where my peers are well off into the world of parenting. I relate better to kids, where there are shared interests and simpler communication. But I read and study voraciously, and my interests are the typical mile-deep, inch-wide, so my strengths are very strong. Sometimes, if people see that side first, they don’t understand how much autism impacts my daily life. But other times, someone first hears what sounds like limited awareness and sees a need for a lot of help. People see this and perceive disabled adults as adults in child bodies. I hate being patted on the head and told I’m coloring pretty in the lines (yes, really). Being different doesn’t mean I don’t deserve respect. Give me a chance, and let me decide if I want help. Accommodations might take effort, but they should always come before doing it for us. People short circuit when someone doesn’t fit into a box. I’m not a child, but I’m also not a typical young adult and there is no trying that will make me one. I know it takes time, but many people do a great job…forget the boxes and get to know ME! I know my own strengths and limits, and I can help you understand them (if you’re okay with doing it in writing!). And remember that I’m as normal to me as you are to you, so you’re not the only one trying to figure things out.
Autistic brains aren’t NT brains. A lot of the reasons many people, including those who “specialize” after years of formal programs (where most of them have never met or heard from an actual autistic person, which is horrible), have things so wrong is because you’re looking at autistic behavior with your NT brain.
So, you think and speak all in one flash, unable to even pull the two apart. When you meet someone who doesn’t speak, you conclude that they must also not be thinking intelligently. When I burst through your door, you think of your body that obeys your brain, so it doesn’t make sense when I say that I “didn’t want to” because…I did. The body is at fault, not my ability to think about other people. When you meet a person who says he’s autistic but you see a man who moves like you and sounds like you, you don’t see disability. But autism isn’t always in movements or even words−it’s in the brain, and owners of those brains are always aware of autism. If you see someone speaking and then later typing, you only know speaking as a constant can or can’t, so it doesn’t occur to you that it can be impacted by circumstances (many sports are based on fluctuating skills, or there would be no need to come together and compete!). Finally, NT adults are used to kids liking certain stuff, but those old favorites and their constant sameness can ease transitions even years later. Others can follow the story line better with cartoons that don’t all look the same or when the dialogue has less subtly and sarcasm. Professionals learn about autism from watching autistic people and then using their NT brains to “decode” our behavior. And they’re pretty awful at it−from empathy to romance to imagination, they have it all wrong.
Had they just thought to ask us…
[Tweet “From empathy to romance to imagination, many professionals have it all wrong-if they only asked us #PenfriendProject”]
But they didn’t and they don’t, and now that autistics from every corner are saying it’s wrong and showing that it’s wrong and explaining in great detail how it works and why the assumption is wrong…we still don’t have the primary voice in this matter (or most matters) of how our minds work. Many of us are thrilled to be asked for more information, and we are happy to educate…it’s as simple as asking. For once, big problem has a very simple solution.