Trigger Warning: I'm not 100% sure, someone tell me why I'm convinced it needs one.
If someone ever asks me to speak and it's clearly as a token... well, let's just say they might find this substituted for whatever presentation they approved at the last second. It's snarky, it's sarcastic, and it's clean enough to use. And FYI, if you want to use it? As long as you say at the end where it came from, you can use this verbatim. This is meant to be used.
First, I want to thank you for inviting me to speak here today as your Token Autistic. Today, I am going to be talking about how much of a success story I am. The idea behind this is to give you hope that some day, the child with autism may grow up to be as much of a success as I am, and may even get to be the Token Autistic at a conference like this one some day. There, they too will talk about how they couldn't do anything independently when they were kids and now they are successful and it's so wonderful. They won't tell you about the fact that they still dig their fingernails into their hands hard enough to leave marks, and they won't let you see them rocking. You will have taught them better, because their autism is something that they need to hide, to overcome. They will make the next generation of parents feel comfortable. The cycle will continue.
Or will it?
I have the same trappings of success you wish for your children, and you speak of how you would consider your child recovered if they had these same trappings. You want to know how I overcame my autism in order to do this.
I didn't.
I embraced it.
*******Insert personal relevant stories here*********
My first Autistic Obsession, my first special interest, my first perseveration, whatever you wish to call it, was math. I know, it's stereotypical, but it's true. I spent a lot of time doing math. I've been told that I watched college math lectures when I was very young. Maybe that's why calculus looked familiar when I took it in tenth grade. That's not the point. The point is that I won the individual chapter MathCounts competition twice, in seventh and eighth grade, and I came in sixth in the state in eighth grade as well. I was on the "A" team for my high school's math team every meet for the entirety of high school, and I went to the regional championships with my high school four times. This is the sort of thing that people like to call overcoming autism. It was no such thing. It was embracing autism. Mathematics was my Autistic obsession, and I was good at it. I brought fidget toys to meets. I wore the exact same outfit to every meet from seventh grade up through the most recent math competition I was in, Putnam my freshman year of college. I became known as Purple Dress Girl for my long sleeved ground length purple dress. For ARML, when I had to wear my team T-shirt, I wore the T-shirt over the long-sleeved purple dress... in Pennsylvania. In June. I brought my routines to my Autistic obsession. Embracing, not overcoming.
I played sports in high school. Specifically, I ran cross country, swam, and ran spring track. What these all have in common is that if I don't want to interact with people on any given day, I really don't have to. The last two years, I went for Ultimate in the spring, which did involve more interaction. That and lunch were often my only social interaction in the day- I saved my energy for them because I knew it was limited. I disengaged when I needed to so I could engage when I wanted to. Embracing, not overcoming.
I never learned to sit still and pay attention at the same time. I can't listen, take notes, and retain what I hear all at once. So I didn't push it. I knit in class. I sewed in class. I basically made a chainmail prom dress... in class. My chemistry teacher got a picture of it, since I spent nearly two years of her class making chainmail. I found ways to satisfy my need to stim and not disrupt the class. Embracing, not overcoming.
In college, I kept playing Ultimate. During practice one day, I lost speech. Yes, that happens sometimes, still. No, do not pity me for it. I neither want nor need your pity. I have what I need- AAC. At the end of practice, no one had really caught on to the fact that I had lost speech, but there had been plans made for some team members to go for dinner after. I wanted to be social. Speech wasn't working. I pulled out my iPad. No one even blinked. I used the tools I had so that I could do what I wanted to do, rather than trying to hide the fact that I am, in fact, Autistic. Embracing, not overcoming.
I have studied abroad on several occasions. I didn't get culture shock. If I already feel like a foreigner in my own country, is it really a shock to feel like a foreigner? I played my lack of culture shock for all it was worth, and I think I got the better immersion experience for it. Embracing, not overcoming.
*******End relevant stories here***********
I could go on. The point is, I didn't overcome autism. It's not even an idea that makes sense. I couldn't use stubbornness born in my brain to overcome the way my brain is wired.
I have lost count of how many parents, much like yourselves, have told me how inspiring I am, how they would consider their children cured if they could speak like me, if they could write like me. A cure is not the secret. I am by no means cured, and if you were somehow to offer me a cure, I would refuse it. This brain is what makes me who I am. I embraced it, and I found the best ways to work with it, not against it.
That's the secret.
Since I am not giving the presentation you expected, and since I can speak, at least at the moment, you probably think these things don't count. At least, that's what you'll tell me. So tell me this: If you think those ways of embracing my autism don't count, why are those among the traits you teach your children to suppress?
In case that bounced, here's a list of difficulties I have written in your language, to tell you that I really am Autistic.
I have what is very clearly selective mutism.
I can't sit still in class.
You see the posters of "proper listening" in your child's classroom? I can't do it. I would, legitimately, fail your child's kindergarten special ed class, today. I am not even joking. They would hold me back and I would be the adult who couldn't even pass kindergarten.
I have picked at my skin until it bled. Recently.
I've stood barefoot in the snow for the sensory input as a way to calm down. Last snowstorm.
A friend of mine has scars on his hands. From my fingernails.
My hiccups are so powerful they can knock me off my feet, still.
Dyspraxia, Dysgraphia, Hyperlexia, SPD, Hypergraphia, Alexithymia, Prosopagnosia, possibly ADHD. Yeah, I've got a pile of things beyond "just" autism too.
Yes, dysgraphia and hypergraphia both. I got banned from handwriting my math homework (twice!) because of illegibility issues, but I can't NOT write.
I followed the wrong person around skiing for almost an hour thinking it was my dad. As in, I am actually face blind.
No, I don't look people in the eye. Faces are OK, eyes generally aren't.
I've melted down... alone... in a foreign country... on multiple occasions.
I've melted down and lost speech at sports practice... as a junior in college.
If my ultimate team wanted to make one of those "inspirational" videos about me and my participation on the team, the totally could. I would never give them permission, but I know exactly how they could do it and exactly what they would say.
I melt down from sensory overload on a semi-regular basis. Even when I don't melt down, the sensory overload is pretty obvious. Hands over the ears, whole body stiffening, eyes squeezed shut, not able to respond to what you ask me, rocking on my feet if I haven't curled up in a corner yet. Basically, all the reactions you're trying to teach your kids not to have.
I wasn't joking when I said I would fail if I were in your kid's special education kindergarten class. Or exaggerating. I survived mainstream kindergarten because they didn't think I was disabled and so I could get away with more. Also because mainstream kindergarten have me the chance to show at least some of my strengths.
That's what I'm going to close with. Shut up about the merely weird, spend some (but not too much!) time on the actually problematic, and go play to whatever strengths your kid has. And if you think they don't have any? That means you're missing them. It might not be a stereotypical autistic strength, and it might not be what you expect of a "spliter skill" or "perseveration," but there will be something. Play to it.
If someone ever asks me to speak and it's clearly as a token... well, let's just say they might find this substituted for whatever presentation they approved at the last second. It's snarky, it's sarcastic, and it's clean enough to use. And FYI, if you want to use it? As long as you say at the end where it came from, you can use this verbatim. This is meant to be used.
First, I want to thank you for inviting me to speak here today as your Token Autistic. Today, I am going to be talking about how much of a success story I am. The idea behind this is to give you hope that some day, the child with autism may grow up to be as much of a success as I am, and may even get to be the Token Autistic at a conference like this one some day. There, they too will talk about how they couldn't do anything independently when they were kids and now they are successful and it's so wonderful. They won't tell you about the fact that they still dig their fingernails into their hands hard enough to leave marks, and they won't let you see them rocking. You will have taught them better, because their autism is something that they need to hide, to overcome. They will make the next generation of parents feel comfortable. The cycle will continue.
Or will it?
I have the same trappings of success you wish for your children, and you speak of how you would consider your child recovered if they had these same trappings. You want to know how I overcame my autism in order to do this.
I didn't.
I embraced it.
*******Insert personal relevant stories here*********
My first Autistic Obsession, my first special interest, my first perseveration, whatever you wish to call it, was math. I know, it's stereotypical, but it's true. I spent a lot of time doing math. I've been told that I watched college math lectures when I was very young. Maybe that's why calculus looked familiar when I took it in tenth grade. That's not the point. The point is that I won the individual chapter MathCounts competition twice, in seventh and eighth grade, and I came in sixth in the state in eighth grade as well. I was on the "A" team for my high school's math team every meet for the entirety of high school, and I went to the regional championships with my high school four times. This is the sort of thing that people like to call overcoming autism. It was no such thing. It was embracing autism. Mathematics was my Autistic obsession, and I was good at it. I brought fidget toys to meets. I wore the exact same outfit to every meet from seventh grade up through the most recent math competition I was in, Putnam my freshman year of college. I became known as Purple Dress Girl for my long sleeved ground length purple dress. For ARML, when I had to wear my team T-shirt, I wore the T-shirt over the long-sleeved purple dress... in Pennsylvania. In June. I brought my routines to my Autistic obsession. Embracing, not overcoming.
I played sports in high school. Specifically, I ran cross country, swam, and ran spring track. What these all have in common is that if I don't want to interact with people on any given day, I really don't have to. The last two years, I went for Ultimate in the spring, which did involve more interaction. That and lunch were often my only social interaction in the day- I saved my energy for them because I knew it was limited. I disengaged when I needed to so I could engage when I wanted to. Embracing, not overcoming.
I never learned to sit still and pay attention at the same time. I can't listen, take notes, and retain what I hear all at once. So I didn't push it. I knit in class. I sewed in class. I basically made a chainmail prom dress... in class. My chemistry teacher got a picture of it, since I spent nearly two years of her class making chainmail. I found ways to satisfy my need to stim and not disrupt the class. Embracing, not overcoming.
In college, I kept playing Ultimate. During practice one day, I lost speech. Yes, that happens sometimes, still. No, do not pity me for it. I neither want nor need your pity. I have what I need- AAC. At the end of practice, no one had really caught on to the fact that I had lost speech, but there had been plans made for some team members to go for dinner after. I wanted to be social. Speech wasn't working. I pulled out my iPad. No one even blinked. I used the tools I had so that I could do what I wanted to do, rather than trying to hide the fact that I am, in fact, Autistic. Embracing, not overcoming.
I have studied abroad on several occasions. I didn't get culture shock. If I already feel like a foreigner in my own country, is it really a shock to feel like a foreigner? I played my lack of culture shock for all it was worth, and I think I got the better immersion experience for it. Embracing, not overcoming.
*******End relevant stories here***********
I could go on. The point is, I didn't overcome autism. It's not even an idea that makes sense. I couldn't use stubbornness born in my brain to overcome the way my brain is wired.
I have lost count of how many parents, much like yourselves, have told me how inspiring I am, how they would consider their children cured if they could speak like me, if they could write like me. A cure is not the secret. I am by no means cured, and if you were somehow to offer me a cure, I would refuse it. This brain is what makes me who I am. I embraced it, and I found the best ways to work with it, not against it.
That's the secret.
Since I am not giving the presentation you expected, and since I can speak, at least at the moment, you probably think these things don't count. At least, that's what you'll tell me. So tell me this: If you think those ways of embracing my autism don't count, why are those among the traits you teach your children to suppress?
In case that bounced, here's a list of difficulties I have written in your language, to tell you that I really am Autistic.
I have what is very clearly selective mutism.
I can't sit still in class.
You see the posters of "proper listening" in your child's classroom? I can't do it. I would, legitimately, fail your child's kindergarten special ed class, today. I am not even joking. They would hold me back and I would be the adult who couldn't even pass kindergarten.
I have picked at my skin until it bled. Recently.
I've stood barefoot in the snow for the sensory input as a way to calm down. Last snowstorm.
A friend of mine has scars on his hands. From my fingernails.
My hiccups are so powerful they can knock me off my feet, still.
Dyspraxia, Dysgraphia, Hyperlexia, SPD, Hypergraphia, Alexithymia, Prosopagnosia, possibly ADHD. Yeah, I've got a pile of things beyond "just" autism too.
Yes, dysgraphia and hypergraphia both. I got banned from handwriting my math homework (twice!) because of illegibility issues, but I can't NOT write.
I followed the wrong person around skiing for almost an hour thinking it was my dad. As in, I am actually face blind.
No, I don't look people in the eye. Faces are OK, eyes generally aren't.
I've melted down... alone... in a foreign country... on multiple occasions.
I've melted down and lost speech at sports practice... as a junior in college.
If my ultimate team wanted to make one of those "inspirational" videos about me and my participation on the team, the totally could. I would never give them permission, but I know exactly how they could do it and exactly what they would say.
I melt down from sensory overload on a semi-regular basis. Even when I don't melt down, the sensory overload is pretty obvious. Hands over the ears, whole body stiffening, eyes squeezed shut, not able to respond to what you ask me, rocking on my feet if I haven't curled up in a corner yet. Basically, all the reactions you're trying to teach your kids not to have.
I wasn't joking when I said I would fail if I were in your kid's special education kindergarten class. Or exaggerating. I survived mainstream kindergarten because they didn't think I was disabled and so I could get away with more. Also because mainstream kindergarten have me the chance to show at least some of my strengths.
That's what I'm going to close with. Shut up about the merely weird, spend some (but not too much!) time on the actually problematic, and go play to whatever strengths your kid has. And if you think they don't have any? That means you're missing them. It might not be a stereotypical autistic strength, and it might not be what you expect of a "spliter skill" or "perseveration," but there will be something. Play to it.
Beautiful!
ReplyDeleteSo, this is triggering to me for a probably non-generalizable reason: The immense, choking grief I felt after executive functioning difficulties forced me to quit the magnet high school (right after 10th grade) where I'd joined the math team. I had to leave my math team. I had to go to a school where there were no more math classes I hadn't already taken. Even when I was on the math team, I struggled because my academic anxiety and executive functioning made it impossible for me to PRACTICE and study at home. My math team was my social unit. My math team was my self-esteem. My math was my escape. My former teammates, some of them, went on to ARML. I could have, but my undiagnosed disability made it impossible. Not because it was impossible for me, but to earn the privilege to stay at that school that had that team, I had to take "research", a project-dominated class that WAS impossible for me, at least without any sympathy or accommodations. Having to quit math team and go to a new school without math led to me hallucinating, having worse selective mutism problems, developing conversion reactions (where I'm wholly or partially paralyzed--now I'm wondering whether these are a form of autism shutdown), and generally feeling lost and worthless and without a center.
ReplyDeleteA more general reason might be "successes that might be missed opportunities for the reader, and painful expressions of autism brought up to pander to anti-autistic parents and professionals" or something like that. I imagine some people who WEREN'T mainstreamed in kindergarten might have their own grief brought up for a similar reason as me with the math team--seeing how close, how small a change in their lives could have set them on a life with certain bright spots they missed and without certain pains they experienced.