Do you wish you could opt out?
Every time there’s a holiday coming up, that involves family gatherings, I get questions along the lines of, “There’s an Autistic kid in my family, is it okay if they spend the holiday in their room instead of with family? Isn’t that rude? Are the parents promoting bad behavior by allowing it? How do I explain it to the rest of the family?”
Interestingly, a lot of these come from Autistic adults who are struggling with the younger Autistic people in their family or friend circles being allowed to spend family gatherings in their room instead of with the group, when their parent are trying hard to accommodate their kid’s different needs.
Seeing someone else get to opt out brings up complex feelings around, “I never got that option,” and internalized lessons about what’s “right,” competing with a wish for something different and a resigned pessimism that it’ll never come, or never apply to them.
Some of these questions are from adult Autistics who are asking for themselves, wondering if it’s OK if they don’t go to the family gathering this year, or if they could go but retreat to a different room for a while if they got overwhelmed. About how that might work. And worry about how their family would react.
Some of these questions are from parents wondering if they’re doing the right thing by letting their kids retreat to their rooms, or explaining it to other family members.
So I want to explore some of these ideas.
Spoiler alert, although I do have a bias, I think that’ll be obvious, I’m not trying to tell you what you should do, because I genuinely don’t think there is a definitive answer that works for all the many families and individuals and circumstances out there.
Instead, my intention is to bring up various aspects of the issue that might spark some ideas, because I believe that it’s valuable to reflect deeply on these types of issues and come to your own conclusions of what you want to create in your life, and why.
And by the way, that might change over time. It’s OK if it evolves as you reflect more and as circumstances change.
“Are the parents promoting bad behavior by giving in?”
So, the most common question I get is, “Are the parents promoting bad behavior by giving in?”
And I wonder, what would make it bad behavior?
The most common answer is that it’s rude. But I tend to think of bad behavior as something that hurts someone else. While eating dinner in a different room isn’t physically harmful to anyone, it might hurt someones’ feelings if they interpret it as an insult.
Let’s deal with each of these separately, rudeness, hurtful behavior, and the insult.
What is rudeness?
So, what makes something rude?
I mean that genuinely. I’ve been trying to figure this out for decades.
Is it saying something that hurts another? I think it’s more clear when someone is hurtful or mean to another. That’s easy to call rude, and we’ll get to hurtful behavior in a bit. But there are lots of things that are considered rude that aren’t actually hurtful.
Is it violating a social norm? Any social norm?
What if the norm is something like, spending time with family is socially more rewarded than spending time alone? Then I want to ask myself why? What is it about the two that, as a society, we value one more than the other?
And I think it’s something like, spending time with family, ideally, is part of how we build relationships and forge the bonds that, again, ideally, lead to a social safety network. Then, when one person needs help, they’d have the social capital to ask for help from others in their network, and later, when others need help, they contribute, and it goes back-and-forth over years and decades, and a lifetime, each receiving and serving at different times, and in different ways. And spending positive time with each other reinforces those networks and bonds.
And because those networks are how we get a lot of our needs met throughout life, everything from childcare to cooking, to rides, a place to stay, some extra cash, a shoulder to cry on, advice, someone to stand up for you, people to laugh and play with, people who know you and accept you with all of your quirks and weirdnesses, who have stood by you through all of your ups and downs, all sorts of physical and emotional needs.
Because these networks, again, ideally, are so valuable, society places heavy emphasis on various ways to build and maintain those networks, which includes spending time together. And opting out, especially during holidays, rituals, traditions, becomes taboo in order to reinforce these values.
So spending time alone becomes associated with negative social judgments. Being labeled a loner, a maverick, anti-social, often have negative connotations rather than simply being descriptive. And when someone chooses alone time over group time, it gets labeled rude to reinforce the social pressure to participate in these networks.
Well, I think that something like this is generally what is meant when we say something like this is rude, but for myself, I keep coming back to the question of harm. Does that actually mean that anyone is getting hurt?
It can be hurtful when you don’t have a network, but are there other ways to build those bonds besides large gatherings? Perhaps spending time together that is less overwhelming? Maybe not everyone at once?
And, it’s a social faux pas to ask this, because even questioning that ideal family network is taboo, because society relies on families to meet a lot of our needs, but it’s an important question. Is your particular family actually creating that kind of mutual aid support system? Some do. Some don’t. Some families are even destructive to each other.
Flip it around
Okay. Another way to approach the question of, is it rude, is to flip it around.
Is it rude to tell someone that they have to stay in the group even when it is physically painful on their senses? That they have to participate even when they’re confused and struggling with the social dynamics?
Is it being rude or polite to let someone avoid that pain by staying in their room, and bringing them a plate of food?
I mentioned that I got a lot of these questions from adults who are figuring out later in life that they’re Autistic, and processing their history again with this new information.
And when they see their own kids, relatives’ kids, or kids of their friends, getting to spend the holiday in their room, the feeling I see so often from my clients is one of longing.
That someone is taking that kid’s needs into account. Needs for comfort, for consideration, for not being overwhelmed by unclear social expectations, for less sensory input.
When they see kids who are forced to endure large gatherings, the most common feeling that comes up is anger, or trauma triggers.
I don’t know what your particular family is like, or the Autistic kid in your life, so I can’t give any one size fits all answers here. I’m just describing what I see pretty consistently in my clients.
Is it an insult?
Let’s talk about the question of hurting someone else. We’re not talking about physical harm here; the potential is for emotional harm, and I think that that’s most common because it’s sometimes interpreted as an insult when someone chooses something else instead of spending time with another person or group.
And I get it, if someone chooses something else, it’s easy to assume that it’s because they don’t want or like you, or that they’re even avoiding you, especially when there isn’t obvious proof to the contrary.
And unless you don’t care what other people think of you, or you’ve done a great deal of inner healing work and have achieved a high level of unconditional self-acceptance, the thought that someone doesn’t like you or want to be with you can be painful.
And I think that a lot of people find it easier to deal with an illusion of intimacy rather than face the idea that they might not be wanted, so we pressure people into spending time together even when it’s uncomfortable.
When you’re going over to someone’s house specifically to spend time with their family, and one of the kids chooses to stay in their room, it’s very easy and common to assume they don’t want you.
But unless that person has actually told you that they don’t want to be around you, or don’t like you, it is an interpretation. A lot of times in this situation, the Autistic person is trying to avoid the sensory overwhelm and social confusion, not necessarily the individual people.
(And if they are trying to avoid someone specifically, maybe there’s a reason for it? Maybe that person makes hurtful comments, criticism, or brings up painful things from the past? I’m not going to open this Pandora’s box right now, but it’s worth considering.)
What if it weren’t interpreted as an insult?
Okay, so what if opting out of a gathering weren’t interpreted as an insult? What else might be going on?
I’ve already mentioned sensory and social overwhelm. Maybe it’s genuinely painful or taxing or energy draining? That’s not a maybe, that’s incredibly common among Autistics.
In my experience, and what I hear consistently from so many others, is that family gatherings are usually challenging because of all of the many sensory inputs, of noises and movement and smells, etc. and because of the greater amount of socialization, with confusing group dynamics, increased pressure to get it right, and charged emotions when you get it wrong.
It’s physically and mentally and emotionally overwhelming, and it drains me so quickly. And when I’m drained, and no longer have the capacity to continue to handle all that input, I start shutting down. And sometimes I get, let’s call it ‘unpleasant to be around’ because I don’t have the energy left to talk, or to filter comments, and I say things that are hurtful and that I regret later, or I go mute and stop answering and people take it as an insult, and usually I look upset, or my face goes flat, and am unable to explain why and that frustrates the people around me. So I’m more likely to exhibit genuinely hurtful behavior, or to be misinterpreted in hurtful ways, when I stay in those situations then when I honor my capacity and only do as much as I can.
Which is sometimes nothing. Sometimes a little. And sometimes I can handle the whole event, but it helps to have the option to excuse myself.
So the kid or adult who wants to opt out may not trying to insult anyone, but simply struggling.
The people pleasing drive
Okay, let’s talk about one other potential for emotional harm. Even if it isn’t taken as an insult, it might upset the other person. They might be upset for any number of reasons, but I think a lot of them boil down to the person having in their mind a vision of the way things “should” be.
We’ve already sort of addressed that, the vision of the close-knit, family network, so I want to address the people pleasing drive.
If your primary reason for not doing something is that it might upset someone, that leads to a whole bunch of sticky situations. Which anyone who is a long-term people pleaser knows intimately. And my purpose now it’s not to get into the heart of people pleasing, that’s a whole different ball of wax, but I do want to point out one interesting result of using other peoples’ responses to decide what to do.
If you take it to the extreme, it would imply that upsetting someone is bad behavior, and in turn that good behavior would mean never upsetting anyone, no matter how they interpret your actions, and no matter whether two people want opposite things from you at the same time. That’s a bind that I think most of us can identify with. It feels awful when you want to please both parties and can’t.
If grandma wants her grandchild at the table, but the grandkid is struggling with all of the noises of a lot of people eating and talking over each other, and the smell of many different foods, and other sensory things are just too much, whether the kid stays or leaves, one of them is going to feel hurt.
Trying to please is what a lot of us do, even Autistics (despite the stereotypes). We’ll go well out of our way to not upset other people, to act “normal,” to go to the holiday dinner even at great personal cost, just to avoid an argument or judgment. But when you really get down to it, what that’s doing is essentially using other peoples’ reactions as a standard for what is acceptable behavior.
Or pushing it further, it means pinning one’s ethical standards to peoples’ reactions. Which isn’t necessarily a healthy way to determine right from wrong.
Because people’s reactions can come from lots of things that have nothing to do with the present situation.
Using that as a way to figure out what to do gets extra complicated when people have conflicting needs. Between Grandma’s need for connection and the kid’s need for manageable levels of sensory input, which one wins out? Often the older person. But what about the kid’s pain? Is it less important because he doesn’t have the skills to accurately explain what’s going on?
Does it have to be a win-loose conflict? Is there a third option that can meet both their needs?
Maybe grandma can spend time with her grandkid before or after dinner, or a different day, when there’s fewer people around, and not as much overwhelm, and the kid can spend dinner in their room, so they’re not as drained later for grandma time?
So it is bad behavior? Or rude? Or insulting? Or upsetting? Or a people pleasing nightmare?
The pressure on parents
Here’s another thought.
The way the original question is usually phrased, “Are the parents promoting bad behavior by giving in?” puts the focus on the parents’ responsibility to teach social norms rather than on the child’s needs.
Parents are already under so much pressure to have “good” kids, and to the extent that they can keep their kids within whatever social norms the other person values at that moment, determines how much social approval the parents get.
The child’s long term impact
But I’m wondering what the child is actually learning when they’re made to stick out family gatherings even when it’s an overwhelming sensory or social experience.
One of the most consistent things that my clients a I work on together, is dismantling the effects of deeply rooted, learned beliefs along the lines of: “no one listens to me,” “no one understands me,” “my needs don’t matter,” “I don’t matter,” “I’m too much,” “people won’t accept me for who I really am,” “people can’t handle who I really am,” “I have to hide who I really am.”
And these almost always come from whoever they grew up with. And very consistently, I hear stories of being forced to endure holiday after holiday in overwhelming large group dinners or events, frequently leading to meltdowns, panic attacks, withdrawing, and generally bad associations with times of the year that are intended as celebrations.
I think that often the adults putting on these events have in their minds an idea of a close-knit family gathering together at the holiday and everyone feeling good. Despite year after year of things going differently, we often cling to this ideal and think that this year we can make it happen.
If we only try harder, bite the bullet, bury our feelings enough, paste on a smile, force the kids into chairs at the table, that this year it will be better this year. And even if it’s not better, well, this is what you’re supposed to do and it would be worse, some kind of major social transgression, not to.
But what are you really getting out of it?
I don’t know about your family. Does your family actually have a good time? Is the Autistic kid actually building positive relationships with relatives during the holiday gathering? Or are they overwhelmed and struggling?
My family generally didn’t have major drama, but I still remember all those gatherings as being something that I simply endured. They were things that I had to get through a few times a year, not generally something that I looked forward to.
Now that I’m an adult and have more choice in my life, I do spend holidays with a small subset of family most of the time, but I usually choose to go to gatherings when there are just a few people. Sometimes I’ll go when it’s a larger group, but I give myself permission in advance to retreat to a different room by myself when I need to, or to leave early. And when I stay, at least I have a choice in it.
And I plan, in advance, to have a lot of time afterwards to restore, in which I have nothing scheduled, and nothing that I have to do at least the whole next day, so if I choose to use up my energy at the gathering, I’m not walking into a bad situation the next day by having a lot of demands on me that I won’t have the capacity to fulfill, or not in the way that I would want.
And I have opted out a family gathering sometimes when the group was too large or included certain people who I know challenged my sensory issues, or when I simply didn’t have the capacity for unrelated reasons.
And because I’ve done a lot of internal healing work, well, I won’t say that my nervous system wasn’t somewhat freaking out by declining the invitation or canceling at the last minute, but I could do it, and I wasn’t mean or abusive or rude. If they were judging me, that’s their business. Not mine. They were trying to get their needs met of a connected, happy family, but I wouldn’t be contributing to that in that state.
But surprisingly, I haven’t actually received as much negative backlash as I expected. I think that’s partially because social norms protected me from people voicing some of their thoughts. And to some extent, I don’t think people actually minded as much as I was afraid they would. They understood and accepted my explanation more than I expected. Some of what I was afraid of was only in my head.
Okay, I’ve brought up a lot of aspects of this issue that many families are struggling with, and we’re almost done here.
How to explain it to the family
The last very common question I want to address briefly is, “How do I explain it to other family members?”
Again, I’m not saying you should let the kid off the hook, or yourself, but if you choose to, it’s helpful to have a starting point for how to explain it to those who might wonder.
I’d like to offer three tips for doing this in a way that (hopefully) doesn’t imply an insult where none is intended. Though if you’re dealing with someone who will twist absolutely anything into an insult, that’s a whole different issue and not your fault.
My biggest tip is to be open and honest. You don’t have to describe all of your reasoning, and all of your thoughts about it, unless the other person is genuinely interested, and keeps asking questions from a place of curiosity and interest, but however much you express, let it be real.
People can sense dishonesty, and they will usually interpret it in the worst possible, most upsetting, and personally insulting way. And those are all things that you’re trying to avoid. Well, I’m assuming you’re trying to avoid those.
Tip number two. As you’re thinking about what to say, ask yourself, “what are the one or two most important things that the other person needs right now in order to understand what’s happening?”
It always helps me to have a couple of sample scripts to start with, and from there I can personalize it and make it my own. So I’m going to offer three options of things you could say, and you’re welcome to modify them or use them as inspiration as you like.
Don’t worry, tip number three is coming. I haven’t forgotten.
So here’s a sample script. “Sam always has a hard time with so many people around, and it always turns into a meltdown that takes him a long time to recover from, and we want him to have a good holiday, too, so we’re trying something different this year. We’re going to let him decide how much how much he can handle, and let him stay in his room for the rest.”
Here’s another option. “We’ve been figuring out more about how things affect Layla, and noticing that all of the noises and smells when there’s a lot of people around for a big dinner, are actually painful to her. Do you remember how she gets really quiet and only gives one word answers after a while? We’re learning that that’s how she copes with the overwhelm. She shuts down and genuinely can’t answer anymore, and she doesn’t feel like her usual bright self. Well, none of us want her to hurt, so we’re not going to make her stay at the table with everyone this time. But she does really well with people one or two at a time, so if you want to come over the next day or come early and talk with her and maybe play a game, let’s figure something out.”
You can customize either of those to make it apply to you if you’re the one who wants to opt out. But I’m going to give one more example that’s a little different for adults trying to explain it to their adult family members.
And here’s tip number three. Give enough context that it makes sense to them, but not so much that it’s overwhelming.
“I’ve been figuring out a lot about myself in the last few months, understanding so much better why I’ve always struggled with some things, and found others easier than most. And one of the things I’m learning is how much I’ve hidden how much I struggle around groups of people, because it feels awful to admit that, even to myself. I’m always afraid that people will take it as meaning that I don’t like them, when I do. It’s just that when there’s a lot going on, I have a hard time processing it all, keeping track of conversations when someone else is having a conversation nearby, that sort of thing. It takes so much energy to look like I’m having a good time, when inside I’m furiously trying to keep up with all the input.
“And afterwards, I crash for days to recover from the energy drain of just a few hours in a group. Even with people I love. It’s so awkward to say I don’t want to come, because I care about you, but I don’t want my nervous system to feel like it got fried from all the sensory intensity of a large gathering.
“Maybe instead of coming to dinner this year, we can talk on the phone, or get together for a movie a few days after, when we’re both less stressed. How does that sound to you?”
You may need to do this explanation several times, with each family unit separately. And that will take some energy upfront, but it’s laying the groundwork for years of better experiences.
What do you want changed?
Or this might not be the year to start this. It might take less energy to go to the gathering and maybe try this next year. Or you might not want to change anything at all. But I suspect, if you’ve watched this long, there’s something in you that wants something to change. What is it for you?
Okay, I hope this is giving you some food for reflection. I’m curious how this has landed for you? You’re welcome to comment below if you’d like to share.
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Have a neurowonderful day.