Growing up, I was involved various groups and activities, such as dance, Girl Scouts, school musicals, color guard, and church groups… in other words, I did what most kids around me did. But I was never quite part of the group. I would get overwhelmed and step out to get a break from the noise level and social interactions. I could never follow the loud, fast jokes and conversations. It was hard to tell a joke from a sign that someone was angry at me, even if I didn’t know why they would be. There were some groups that flat out bullied me (which I didn’t understand at the time), but most kids were never mean or isolating, I was just a square peg with a bunch of round-holed opportunities.
Everybody knows the second part of that famous line… even if the round holes aren’t full of metal spikes or poisonous snakes, it damages the square peg every time she has to be something she cannot be.
Many a square peg kid has learned to lose herself in books. I was an early reader, and if ever a reader loved words, it’s me… they aren’t my natural way of thinking and communicating, but it almost makes me find them even more fascinating. That interest has served me well over the years. I have a master’s in English and creative writing, I spend my days writing and editing, and I get through sleepless nights by diagramming famous quotes in my head.
As much as I love language, I was missing what I needed even more in all those hours spent with my books. I needed a friend. I read enough to know that lonely kids find dear friends in their books. When the characters were generous enough to tell me, I learned why they did something that seemed senseless to me. But I didn’t join them on their journeys or feel deep emotions, and I never put myself into the stories. I never connected with the characters. Their actions and thoughts and how they treated others seemed strange… strange just like my peers. It was more of what I already did day after day—the characters never went so far as to cruelly refuse to finish their tales if I continued to hang around, but they did go about them without much recognition that I was there, reading, listening, waiting for them to say something that would give me a chance to jump in and say, “Oh, me too! I never knew other people thought that way!” I knew the feeling, because any time there’s a group interaction, I stand nearby and listen and listen and hope for some moment to jump in and then—and this key—not be met with silence, confusion, or a remark about being off topic or too loud or talking over someone. Interrupting is never welcome, but with a brief delay in processing what I hear, it doesn’t seem to matter how hard I try…I interrupt a lot.
When I was diagnosed with autism, I started to read the memoirs and stories and blogs from other autistic people…People who type freely but get stuck when they want to speak the same ideas! People who know what I mean when I say I don’t like a food and why I can’t just eat it anyway! People who became my friends, who know that asking about my cat is what makes me feel loved, who know that I am listening and thinking and understanding and feeling, even when none of it shows on my face or in my words. Over time, as I did more and more in autism advocacy, many of my book heroes became my good friends.
Good friends AND heroes, as much as ever.
Mentoring is something the autism community does very well. I have been fully accepted, included, valued, encouraged, boosted, given incredible advocacy opportunities, and made to laugh until I could hardly breathe by older autistic men and women who have absolutely no obligation to support me. As I have had opportunities to pay it forward, now it’s even more of an honor to be accepted by families who see me as a good leader. The greatest honor is when the kids become my friends. It can take a long time. There’s a long process for a kid to adjust to the context of where and when I see them. We both have to find a routine with each other. They have to learn that they can trust me, and I know never to rush it. They listen to find out what I know about their interests. They have to see what my rules are—every adult has rules about how a kid should act, and they involve the same ideas, but the precise limits are different from one adult to the next. They have to find out what happens when they break the rules and especially what happens when they break them with absolutely no intention of doing so.
I met a kiddo who was 8 at the time. The first few times we met, she hardly acknowledged me, and I didn’t ask her any questions or force her to engage. I stayed nearby to make sure she had what she needed for the craft she was doing and that was it. To be honest, that’s all I would have known to do anyway. I don’t lead conversations very well! It was like that for months, the two of us sharing space but few words.
Autistic kids learn early that people can’t be trusted, mostly because they’re unpredictable, and that’s because their rules are always changing without any warning and things can get ugly when we least expect it. We tend to have few same-age friends, which was true of the kiddo above as it was and often is for me, making it hard to learn from other people’s experiences. Stories and characters don’t reflect our whole approach to things, either. They don’t make sense. Their actions and choices are ridiculous sometimes. How can we learn when all the usual guides are from alien social worlds?
There are a lot of social skills programs and approaches, but imitating the skills doesn’t make them natural, and it doesn’t make them mean anything. Small talk, for most people, is a means of establishing a common ground and reaching out to make a social connection, making both parties feel warm and fuzzy and thus more willing to conduct the business at hand. For us, it’s more like a test with a word bank full of “how you are” and “I’m fine, thanks,” and “sure is hot!” We do our best to choose the right option and spout it out to fill in the blank, which is a test…no warm fuzzies involved.
There are times and places those social niceties are useful things, but I’ll leave the social skills to the myriad opinions on the options out there. When it comes to mentoring, I want that kid to know how incredible, valued, brilliant, creative, valid, interesting, and all those other self-esteem things we pour into kids…that are inadvertently kept from autistic kids. When we teach them to change their whole social approach and correct them all the time, without realizing how incredibly hard they’re trying to do the thing they just got corrected for not doing…they learn that the right way to be is what they aren’t. The way they are is the wrong way. How would you feel if your number one gauge of an interaction is whether it feels right, because that’s your best bet for knowing it must be wrong. No one has to say those words and the family may not believe it at all, but it’s an easy way to make sense of what feels like a chaotic world.
So, knowing that kids generally have someone encouraging their social skills, I aim to validate kids in their natural way of thinking and doing and experiencing the world. My rules are something like this:
- Interrupting happens. You don’t have to apologize. Just keep on going. (I know your intentions aren’t to interrupt)
- Forget about staying “on topic.” You can ask a question or make a comment about anything at any time. (Conversation is fun when you can focus on your passions and not obsess over rules)
- You can tell me about any interest you have for as long as you like—if I don’t know anything about it, please try to catch me up first, but then, have at it. (You are one interesting kid!)
- You can ask me anything. (Learning is fun)
- You don’t have to look at me when you talk to me. You can if you want, but I won’t be looking at you anyway. (It’s exciting to focus solely on your ideas—that’s how they grow into something bigger)
- You don’t have to answer right away. I might not answer you right away. (I care about what you’re telling me more than following a script)
- Please and thank you are nice words, but a happy-in-yourself kid says a whole lot more. (And heck, I won’t notice if you forget to say them!)
- I’m still learning new things all the time, too…and if you want, I’m always glad to learn them with you. (In a true friendship, there is no one better than the other—let’s do this together)
Those rules don’t fly in most situations. “Autistic kids don’t often get positive feedback when they’re interacting naturally. That kid needs to know that his encyclopedic knowledge of Pokemon is amazing and not just annoying. If he’s spent months fine-tuning his ideas about finding aliens in deep space, that’s persistence, not just perseveration, with a good dose of creativity. Shopping trips become minion scavenger hunts and good math practice for the price per ounce and the source of the kind of laugh that makes your eyes water…when you read the makeup ads…wondering how anyone would fall for a promise for “those movie-star brows!”
The other day, the silent 8-year-old, who is now 10, called from the car while riding with her mom to go camping. She was excited so she wanted to talk to me. So she called. That was the first time she had ever done something like that with anyone. We talked about old versus new Disney channel shows and theme park preferences. I left some awkward pauses while I worked out what to say and got the conversation a little knotted up a few times. I’ve gotten overstimulated while we’ve been out, too, and with my health issues, we’ve definitely had some unexpected wrenches thrown our way. Since an autistic kid will grow up to be an autistic adult, what better way to learn about the ups and downs and important lessons than a genuine, open friendship?
Last week, we met someone new, and kiddo not only chatted right along with us, she told the person how we met—at an autism center. That’s the kiddo who didn’t like the word to be said around her two years ago.
Mentoring is powerful, but I definitely can’t take all the credit. It’s beyond the point, anyway. There’s a kid who accepts herself enough to write “is awesome” after her name. She’s not cocky. It’s a fact—and she’d be the first one to say that every kid should do the same, because they’re all awesome.