This is autism
This is my submission for the "This is autism" flash blog
I wake up in the morning and check my livejournal, a certain set of blogs that are updated daily, the CNN headlines and the MSN online crossword puzzle. Sometimes the order varies, and sometimes I don’t have time, but by and large, this is my routine and I stick with my routine. I like routine. This is autism.
I get my things together for work. I have to keep my keys and ID lanyard in the same place, because I can never find anything. Sometimes I can’t find my glasses because I put them down somewhere. I look with my fingers because I may not reliably see them, even though I see fine (even without my glasses.) I have to double and triple check that I have my purse, my lunch, my cell phone. I am disorganized in time and space. This is autism too.
There’s a phone message waiting for me when I get in, to call a parent back. One of my patients is banging her head again, hard, because yes, this is autism, sometimes as well. No one ever said it wasn’t. We talk about looking for physical causes, headache, stomachache, ear infection, permanent teeth coming in. We talk about continued efforts to establish communication, to provide increased visual supports, to offer choices. We talk about medications. Her father is worried. Talking on the phone is one of the hardest parts of my job but I have some pretty good scripts. I still wish we didn’t have an office policy against e-mail.
I see a patient who is having trouble focusing at school. We’re trying medication. He’s able to tell me how it makes him feel when it works, how the side effects made him feel when the dose was too high. He needs help with organization and school is expecting him to manage his assignments and materials without support. He is being bullied at school, and he can tell me how that feels, too. I tell him I know all about it, and it stinks. He says he wants to be a teacher someday. His mother is proud of her son, frustrated with school. I give them some bullying resources and the number for a parent special education advocacy group and the link to “Autistifying My Habitat”.
I hear my next patient protesting the blood pressure cuff. The nurses offer bubbles and I hear giggles. I take the magazines and crayons out of the room so they don’t get eaten and bring in some trucks and blocks. He loves trucks. He runs them off the end of the table to watch them fall. Then he lines up the blocks. He flaps happily. A casual observer in the waiting room would recognize this as autism. He is getting speech therapy now, and just started preschool. They are using a visual schedule and he has transitioned pretty well. He can tell me his name and age and he turns his head helpfully when I look in his ears. He’s pretty facile on the iPAD, too. At his last visit, he screamed the entire time and hid under the table. His mother is tired but pleased.
I can’t get a word in edgewise. I am hearing the entire plot of a video game, and three movies based on the video game. He is wearing a tee-shirt based on the video game. I offer crayons and get illustrations of the levels, a brief respite while I ask his mother how toilet training is going and discuss the results of some genetics tests which have come in. He taps on my arm again, eager to show me the drawings. His mother begs him to wait just a minute while she talks to me, hands him her phone, turns the volume way down, but she’s smiling. I agree to examine him while he plays, but I do need his arms, one at a time, and his eyes, briefly, with the game on pause. Then I have a few minutes to watch him play, the novice watching the expert.
The wheelie stool isn’t safe for either of us. I can’t keep my balance, and he spins and crashes into things. His grandmother orders him off, anxious to have him cooperate. I calmly open the door, shove it out into the hallway, close the door and carry on. I’m trying to get through some standard tests. I let him work standing, pacing, rocking, playing with a ball he found on the table. I let him point to his answers instead of using the pencil. I don’t care what he looks like, so long as I can get a reasonable sense of what he can do. He draws pictures of dinosaurs. School had said he was untestable. Later I write up my recommendations, suggest letting him work standing or pacing, having him dictate or type, giving lots of breaks for movement, fidget objects. I recommend school incorporate dinosaurs into his curriculum. I firmly recommend that school scrap the goals related to rocking and eye contact. These may be the most autistic recommendations school has ever gotten in a report. I’m kind of okay with that, which is pretty autistic too, really.
I don’t recognize her in the hallway. Well, she’s wearing scrubs and an ID badge, so I know she works here and presumably I know her. But I don’t recognize her face and her badge is turned around so I can’t see her name. She’s talking to me about a meeting. I look away while listening and start running through names, trying to place her. I wonder if I can get her to e-mail me. E-mails are nice because they have the sender’s name on them. She puts her hand on my arm and I try not to flinch or pull away. Eventually she says something which clicks. Prosopagnosia is autism, too.
I prep for my new patient. I’ve read through 149 pages of previous records so I have a pretty good idea why he’s here. I hate surprises. He’s had an autism diagnosis for about a year, but his family hasn’t told him yet. They aren’t sure how to go about it. They aren’t sure they want to label him. I gently break the news to them that they are going to need to break the news to him, and that if they don’t supply an accurate label, he is going to be supplied with plenty of harmful ones. School tends to favor “non-compliant” while classmates go for “weird.” He’s been doodling bridges the whole time we’ve been talking, says he wants to be an engineer someday when I ask. I can see engineering school going well, but first he has to survive 8th grade. I compile resources including a book of autism heroes and a book on middle school by an autistic teenager. I also point out that he should be offered the opportunity to be part of autistic community and to find other people like him. I try to explain that there is autistic community. I don’t tell them how I know all this. They probably wouldn’t believe me if I did. I wonder if their son would, though. If he doesn’t now, I bet he will some day.
I need help sending a referral. The nurses are talking. I try to find the pause in the conversation. There isn’t one. I stand off to the side, trying to figure out where to stand. I’m not even sure where “off to the side” is. Do I look at the one who is talking? Do I join in even though I wasn’t part of the conversation initially? I shift my weight and rock a little but stop myself before I start clicking my tongue. This is what autism looks like in the workplace.
My last patient of the day is not yet diagnosed. Her family is looking for guidance to help her navigate the increasingly challenging world. She has lots of language and I chat with her along with her parents. She’s quite social. I listen some more, hear some slightly unusual inflection and word use for her age, some subtle scripting. I put my language ear to good use. She’s social, her parents say, and likes to join groups of kids, but she doesn’t know what to do once she’s joined them, wants to play the same way over and over. No one would ever look at her in the waiting room and think, autism, but I do. The more I chat with her, play with her, learn about her, the more she pings my ASDar. That’s an undercelebrated aspect of autism, the ASDar, but a useful one. As she waves happily goodbye to me, I smile back and think, “I bet you’re autism, too!”
Home again, home again, jiggity-jig. I turn up the heat. I slump onto the couch, happy to not be at a desk. I check livejournal, and the blogs that aren’t updated daily. I turn on a TV police proceedural and diagnose the protagonist as a probable autistic. I instant message with a friend. We talk about our workdays. She’s autistic too.
In the past two years, I have taken care of 102 autistic patients. I know because I went back and counted. There were probably nearly as many autistics at Autreat, but I never got a complete head count and estimating is not one of my autistic superpowers. Another way to tell we aren’t all Rainman. But we are all autism. The joy of special interests. The challenges of trying to mind-read. The profound language disability. The language facility, quick on the pun. The amazing visual perception abilities. The significant visual perception disabilities. The computer programmer. The museum curator. The individual with significant support needs for activities of daily living. The person who is unemployed despite a desire to work and strong job skills due to society prejudice. The autistic child and her autistic teacher. The autistic child and his autistic doctor. The autistic children and their autistic parents.
Autism is a developmental disability affecting social communication and involving some degree of repetitive behaviors or interests. It can change over time as people change over time, growing and developing and learning new skills, and it can look very different in the same person across different settings. Autism looks 100 different ways, 200 different ways, 3 million different ways. But we’re all autism.
I wake up in the morning and check my livejournal, a certain set of blogs that are updated daily, the CNN headlines and the MSN online crossword puzzle. Sometimes the order varies, and sometimes I don’t have time, but by and large, this is my routine and I stick with my routine. I like routine. This is autism.
I get my things together for work. I have to keep my keys and ID lanyard in the same place, because I can never find anything. Sometimes I can’t find my glasses because I put them down somewhere. I look with my fingers because I may not reliably see them, even though I see fine (even without my glasses.) I have to double and triple check that I have my purse, my lunch, my cell phone. I am disorganized in time and space. This is autism too.
There’s a phone message waiting for me when I get in, to call a parent back. One of my patients is banging her head again, hard, because yes, this is autism, sometimes as well. No one ever said it wasn’t. We talk about looking for physical causes, headache, stomachache, ear infection, permanent teeth coming in. We talk about continued efforts to establish communication, to provide increased visual supports, to offer choices. We talk about medications. Her father is worried. Talking on the phone is one of the hardest parts of my job but I have some pretty good scripts. I still wish we didn’t have an office policy against e-mail.
I see a patient who is having trouble focusing at school. We’re trying medication. He’s able to tell me how it makes him feel when it works, how the side effects made him feel when the dose was too high. He needs help with organization and school is expecting him to manage his assignments and materials without support. He is being bullied at school, and he can tell me how that feels, too. I tell him I know all about it, and it stinks. He says he wants to be a teacher someday. His mother is proud of her son, frustrated with school. I give them some bullying resources and the number for a parent special education advocacy group and the link to “Autistifying My Habitat”.
I hear my next patient protesting the blood pressure cuff. The nurses offer bubbles and I hear giggles. I take the magazines and crayons out of the room so they don’t get eaten and bring in some trucks and blocks. He loves trucks. He runs them off the end of the table to watch them fall. Then he lines up the blocks. He flaps happily. A casual observer in the waiting room would recognize this as autism. He is getting speech therapy now, and just started preschool. They are using a visual schedule and he has transitioned pretty well. He can tell me his name and age and he turns his head helpfully when I look in his ears. He’s pretty facile on the iPAD, too. At his last visit, he screamed the entire time and hid under the table. His mother is tired but pleased.
I can’t get a word in edgewise. I am hearing the entire plot of a video game, and three movies based on the video game. He is wearing a tee-shirt based on the video game. I offer crayons and get illustrations of the levels, a brief respite while I ask his mother how toilet training is going and discuss the results of some genetics tests which have come in. He taps on my arm again, eager to show me the drawings. His mother begs him to wait just a minute while she talks to me, hands him her phone, turns the volume way down, but she’s smiling. I agree to examine him while he plays, but I do need his arms, one at a time, and his eyes, briefly, with the game on pause. Then I have a few minutes to watch him play, the novice watching the expert.
The wheelie stool isn’t safe for either of us. I can’t keep my balance, and he spins and crashes into things. His grandmother orders him off, anxious to have him cooperate. I calmly open the door, shove it out into the hallway, close the door and carry on. I’m trying to get through some standard tests. I let him work standing, pacing, rocking, playing with a ball he found on the table. I let him point to his answers instead of using the pencil. I don’t care what he looks like, so long as I can get a reasonable sense of what he can do. He draws pictures of dinosaurs. School had said he was untestable. Later I write up my recommendations, suggest letting him work standing or pacing, having him dictate or type, giving lots of breaks for movement, fidget objects. I recommend school incorporate dinosaurs into his curriculum. I firmly recommend that school scrap the goals related to rocking and eye contact. These may be the most autistic recommendations school has ever gotten in a report. I’m kind of okay with that, which is pretty autistic too, really.
I don’t recognize her in the hallway. Well, she’s wearing scrubs and an ID badge, so I know she works here and presumably I know her. But I don’t recognize her face and her badge is turned around so I can’t see her name. She’s talking to me about a meeting. I look away while listening and start running through names, trying to place her. I wonder if I can get her to e-mail me. E-mails are nice because they have the sender’s name on them. She puts her hand on my arm and I try not to flinch or pull away. Eventually she says something which clicks. Prosopagnosia is autism, too.
I prep for my new patient. I’ve read through 149 pages of previous records so I have a pretty good idea why he’s here. I hate surprises. He’s had an autism diagnosis for about a year, but his family hasn’t told him yet. They aren’t sure how to go about it. They aren’t sure they want to label him. I gently break the news to them that they are going to need to break the news to him, and that if they don’t supply an accurate label, he is going to be supplied with plenty of harmful ones. School tends to favor “non-compliant” while classmates go for “weird.” He’s been doodling bridges the whole time we’ve been talking, says he wants to be an engineer someday when I ask. I can see engineering school going well, but first he has to survive 8th grade. I compile resources including a book of autism heroes and a book on middle school by an autistic teenager. I also point out that he should be offered the opportunity to be part of autistic community and to find other people like him. I try to explain that there is autistic community. I don’t tell them how I know all this. They probably wouldn’t believe me if I did. I wonder if their son would, though. If he doesn’t now, I bet he will some day.
I need help sending a referral. The nurses are talking. I try to find the pause in the conversation. There isn’t one. I stand off to the side, trying to figure out where to stand. I’m not even sure where “off to the side” is. Do I look at the one who is talking? Do I join in even though I wasn’t part of the conversation initially? I shift my weight and rock a little but stop myself before I start clicking my tongue. This is what autism looks like in the workplace.
My last patient of the day is not yet diagnosed. Her family is looking for guidance to help her navigate the increasingly challenging world. She has lots of language and I chat with her along with her parents. She’s quite social. I listen some more, hear some slightly unusual inflection and word use for her age, some subtle scripting. I put my language ear to good use. She’s social, her parents say, and likes to join groups of kids, but she doesn’t know what to do once she’s joined them, wants to play the same way over and over. No one would ever look at her in the waiting room and think, autism, but I do. The more I chat with her, play with her, learn about her, the more she pings my ASDar. That’s an undercelebrated aspect of autism, the ASDar, but a useful one. As she waves happily goodbye to me, I smile back and think, “I bet you’re autism, too!”
Home again, home again, jiggity-jig. I turn up the heat. I slump onto the couch, happy to not be at a desk. I check livejournal, and the blogs that aren’t updated daily. I turn on a TV police proceedural and diagnose the protagonist as a probable autistic. I instant message with a friend. We talk about our workdays. She’s autistic too.
In the past two years, I have taken care of 102 autistic patients. I know because I went back and counted. There were probably nearly as many autistics at Autreat, but I never got a complete head count and estimating is not one of my autistic superpowers. Another way to tell we aren’t all Rainman. But we are all autism. The joy of special interests. The challenges of trying to mind-read. The profound language disability. The language facility, quick on the pun. The amazing visual perception abilities. The significant visual perception disabilities. The computer programmer. The museum curator. The individual with significant support needs for activities of daily living. The person who is unemployed despite a desire to work and strong job skills due to society prejudice. The autistic child and her autistic teacher. The autistic child and his autistic doctor. The autistic children and their autistic parents.
Autism is a developmental disability affecting social communication and involving some degree of repetitive behaviors or interests. It can change over time as people change over time, growing and developing and learning new skills, and it can look very different in the same person across different settings. Autism looks 100 different ways, 200 different ways, 3 million different ways. But we’re all autism.