It’s all about learning how to function in a neurotypical world
When your special-needs child turns 18, it rocks your world. You can’t even schedule a doctor’s appointment or request a change in medication without a signed HIPAA release. And then there are documents like Durable Power of Attorney and Healthcare Power of Attorney. But what really ties your heart up in knots is the knowledge that they’ll be out in the world on their own, without you there to smooth over the bumps and explain their behavior.
The experts all say that you should start introducing your child to “adulting” — learning how to function in a neurotypical world — early. And I don’t disagree. But that‘s just not reality when your child fits the Pathological Demand Avoidance profile on the autism spectrum (I’m sure this is true for other autism profiles as well, but this is the one I know).
For the better part of a decade, we were in survival mode. With PDA, even a request as simple as changing shirts can turn into an all-out battle. When my son was young, I often counted down the minutes until my husband came home from work. Later, we focused on getting through the next test, the next semester, etc.
We also had two more children during that time — all three born in less than three years. The younger two were born in January and December of the same calendar year. So, for a while, I had a preschooler who battled me at every step, a wheezing toddler who needed breathing treatments every four hours, and a newborn. We knew what we were getting in to — there were no “accidents” in our family — but that doesn’t mean it wasn’t hard.
So we didn’t have much bandwidth to spend on social skills or therapy — and, since the pathological demand avoidance was very real, he wouldn’t have participated anyway. He always saw such approaches as attempts to manipulate him and, if he couldn’t avoid them, he tried to turn the tables on the therapist.
Now he’s graduated from high school, and the challenges are bigger than doing homework or learning social skills. Now he has to function in a neurotypical world that makes no sense at all to him. In his world, people say what they mean and mean what they say. In his world, it’s simple. But everything from figurative language to those polite little white lies we tell every day to grease the wheels of social behavior leaves him confused and frustrated.
I doubt I’ll ever be able to get my son to understand those things, at least not on the intuitive level that neurotypical adults do. So I thought I’d start making a list of things I want him to accept on faith as being true in the “neurotypical” world, even if they make no sense to him. I need him to trust his mama.
This is an area where I might frequently get myself in trouble, and not just when it comes to autism: I refuse to pretend the ideal is real. Yes, I believe that we should live in an ideal world where neurodiversity is accepted as a matter of course. But we don’t. So I’m not going to send my son out into the world expecting that everyone else will understand, accept, and accommodate him just as he is. If I did, he’d call me a liar the first time reality slapped him in the face. And he’d be right.
So, what do I do? He understands himself remarkably well. He knows exactly what makes him tick. But he doesn’t always understand how other people see him. So I talk to him about specific things he does that might hold him back in the outside world and what he can do to adjust. I don’t give him the message that he’s “weird” or “different;” I just try to point out the potholes in his way.
And that’s how I’ll probably get myself in trouble (from a politically correct perspective). In this and many other situations, I acknowledge how the world should work, but I don’t pretend that we’re already there. Because that would be a lie, and if that happened with any of my kids, they’d stop trusting me, right at the time they need me the most (even if they don’t want to admit it). And I can’t risk that.
Because mama said so: 12 truths I want my autistic son to accept on faith as he starts learning how to function in a neurotypical world
1. Always start off on the right foot by saying “Sir” and “Ma’am.”
Because we live in the South, people give you the benefit of the doubt just for saying those words. Silly as it may seem, those words carry incredible social currency. Upon hearing them, people will be willing to overlook some of the social bumps that come from being on the spectrum. And, yes, some adults will make negative assumptions about you if you don’t say “Sir” and “Ma’am.”
2. When a boss or another authority figure asks if you want to do something (“Hey, want to come help me with this?”), they’re not really asking.
It’s a polite way of telling you to. So don’t say, “No,” even if you don’t want to. Instead, do as you’re asked, and do it enthusiastically.
3. In the real world, you can’t refuse to do work that you think is stupid, pointless, unnecessary, etc.
I know you thought you’d be done with “pointless” work once you graduated from high school. Unfortunately, you’ll encounter it in the working world, too. Most of the time, however, there will actually be a reason you’re not aware of. Other times, you may really know a better, faster way to get the job done. (And since you’ve already outsmarted both your school district and a national curriculum provider, I wouldn’t doubt you.) But wait until a time when your boss isn’t swamped, and ask permission to demonstrate your suggestions. And don’t talk about something being “pointless.” “Inefficiency” and “waste” go down much more smoothly in the business world. And If they don’t want to adopt your suggestions, carry on!
And don’t forget “Sir” and “Ma’am.”
4. I know rigidity is part of being on the spectrum, but try to be a little less rigid when things don’t go according to your expectations. Here’s an example:
If you’re driving and come to an intersection where police are directing traffic (because of a recent accident, for example), do what the officers tell you to do rather than watching the traffic light. If an officer tells you to stop on green or go on red, don’t argue or ask questions; just do it.
Come to think of it, that applies to other situations, too. You tend to get stuck on small points and lead other people into circular arguments. I suspect this might be intentional. But even though it may have occasionally benefited you in high school, it’s unlikely to do so in the real world.
5. Let someone know if you don’t understand what they’re telling you or asking you to do.
You have very black-and-white thinking; The multi-colored, figurative speech of people who don’t have autism sometimes goes right over your head. So ask if you don’t understand.
6. Understand company hierarchy, and learn where you fit.
Many people with Pathological Demand Avoidance speak the same way to their bosses (and their boss’s bosses) as they do to anyone else. It’s important for you to accept that some people — like your boss — have legitimate authority over you. It’s also important to know where you stand in the work hierarchy. You can always ask your boss to make you an organizational chart that shows you who you need to take directions from, whether you’ve earned enough clout to present ideas in a meeting, etc. These are things most people naturally pick up. You may not, so don’t be afraid to ask someone to lay it out for you.
7. Show manners and kindness to everyone you work with, no matter where they are on the social or organizational hierarchy.
Be kind — that’s an easy one to follow. Oh — and think before you speak. Is it helpful? Is it true? (Wait — scratch that one. Even if it’s true, it may not need to be said.)Is it kind? If not, keep it to yourself unless (and I know you’ll ask this) it could cause a critical failure. Then handle things as gently as you can.
8. Learn basic social customs.
Right now, many people are working from home. But we’ll probably be back in the office someday, even if it’s just for occasional meetings. Or maybe you’ll have an in-person job interview. So you’ll need to learn these little social rituals even if you have no idea why people do them.
If you’re at a job interview, the recruiter will probably introduce himself first. If you’re attending a meeting with your team for the first time, your boss will probably introduce you to everyone. If not, go ahead and introduce yourself and explain your role. And then wait for them to respond with the same information.
Who knows if handshakes will ever become pro forma again? But just in case handshakes resurrect themselves, here’s what to do.
Typically, the person who offers their hand first talks first. The other person accepts the handshake and speaks next. And most people think a good handshake means a firm grasp and two or three shakes. (And don’t wipe your hand afterward!)
I know you don’t like to be touched. If you know you have an upcoming event where there will be a lot of handshaking involved, try watching that episode of Friends where Chandler’s boss slaps everybody on their backside, and be thankful that’s not you!
9. Some of your favorite topics of discussion fall into the “Not Safe for Work” category.
Save those for home. You may also find a new topic that interests you so much you’ll follow it to the very last rabbit hole. Some people may show interest in the beginning, but they’ll give out long before you do. Look for signs that people are ready to move on: fidgeting, playing with their phone, looking around the room, etc. Watch for the things you do when you’re uncomfortable. When you see those signs in other people, wrap things up and let someone else talk.
10. Typical conversations involve give-and-take.
That means that when the other person tells you something, your response should reflect what they said — it shows you were listening and that you care about what they have to say.
Here are a couple of examples:
Co-worker: “I really like dogs.”
You: “My dog’s name is Reagan.”
Co-worker: “I really like dogs.”
You: “So do I! Do you have dogs now? What are their names?”
See the difference? In the first example, you make it all about you. In the second example, you keep the focus on the other people. When you’re in a conversation with others, your response should always be tied in some way to what the previous speaker said.
11. You will NOT do everything right at your job. No one does.
So don’t rebel against feedback. If you’re doing something wrong, you should welcome the opportunity to improve your performance. If you’re feeling a bit defensive — if you think the criticism is unfair, for example,— just say thank you (and don’t forget “Sir” or “Ma’am”) and walk away. Sleep on it. If it still bothers you, ask for a meeting to discuss any concerns you may have.
12. Resist the urge to prove you’re smarter than everyone else.
As much as you enjoy it, no one else does (Well, I’m always up for the challenge, but consider me an anomaly.) Bosses, in particular, tend to hate it. Especially if you do it in front of other people.
My sweet, funny, brilliant, boy: You’re at a place on the spectrum that brings both blessings and challenges. You can “pass” well enough that no one may even suspect you have autism until something upsets your equilibrium. So you may want to tell people about being on the spectrum from the very beginning, just to help them understand you better and to make it easier for them to take any little quirks in stride.
That’s up to you, of course. But I’ve been amazed over these last few years at how well you’ve come to know yourself. You know exactly what makes you tick — and what doesn’t. And the more of that you’re willing to share with people, the broader your horizons will be.
I’m so, so proud of you, and I’ll always, ALWAYS be here as your bridge to the neurotypical world.
These are not affiliate links: I’m posting this image because we have quite a few of Rita’s paintings in our house (this one was custom), and every one of them brings me joy. And Rita is a beautiful soul whom I’m blessed to know.