an exercise in perspective taking

~

Ed note: I know I promised the Nickelodeon post today. But it turns out that creating it, at least the way that I envision it, is much more labor-intensive than I expected. And since labor-intensive equals time-intensive and time is at a premium in my world, it’s going to have to wait just one more day. I just can’t half-ass it, given how many people contributed to creating magic for my kid there. So .. tomorrow. In the meantime, we’re going to head to an entirely different place. One not filled with larger than life cartoon characters, but with messy, fallible, real-life people. Like us. Here goes. 

~

So … There was some drama while I was away. Two of my friends, a well-loved and respected autistic self-advocate and a well-loved and respected parent of an autistic child ran into some pretty serious difficulty communicating with one another. Feelings were hurt and lines were drawn. It was threatening to get ugly. But then one apologized for his unintended missteps. And the other accepted. And we all learned from it and moved on.

But not before others piled on from every side to throw gasoline on the fire. Not before the pilers-on fanned the cyber flames with anger and accusation. Not before they triggered old fears and validated mistrust from every angle.

I tried to stay away from it all. I was in Florida on the trip of a lifetime with my girl and she deserved all of me. But it bled into our downtime. A Facebook status here, a link there. And even from a distance it made me frustrated and sad. I resolved not to write about it. But it didn’t work. It’s just not who I am. So here it is.

~

We have to do better. I believe that we can. I have to believe that, because otherwise, what hope is there for my daughter?

This is what I know.

The people involved in this dust-up are good people with good intentions. The spark was lit completely inadvertently.

This is also what I know.

I know that a conversation with an autistic adult whom I don’t know well might be fraught with land mines – land mines that I might not be able to see. And the irony of that is not lost on me. The fact is, autistic people engage in conversation with hidden land mines all the time. Missed cues, sarcasm taken literally, no roadmap for nonverbal communication – these are their every day land mines.

So when I enter a conversation with an autistic person whom I don’t know a lot about, I have to do some extra work. I have to do what I can to avoid being the one stepping on land mines and I also have to do everything I can to avoid inadvertently laying them as I walk. And I’m well-practiced in the process. I do it every day with my girl. But that doesn’t mean that I can do it perfectly. Given how different every individual is, I may not even do it well. But I know how to try. And I do.

But even people with the best of intentions screw up. I sure as hell do. Regularly. Especially when the rules can change without warning – or at least without discernible warning. And that happens with those that are close to us too – have you ever tried something that worked for your kid in one setting that was disastrous for him in another? And aren’t we all this way really? Point is that the misstep that was made last week could just as easily have been mine.

You know what I think is a perfect metaphor? I know it sounds odd, but bear with me. Tickling. Yes, tickling. Tickling is fun until it’s not. It makes us laugh and giggle and snort. Until it doesn’t.

Until we can’t breathe. Until we can’t take it anymore and it feels like torture and we would give anything to make it stop. Until suddenly it’s about power and control and we feel like we have neither and, Jesus, it’s scary to feel that way, isn’t it?

It’s scary to feel like we’re struggling and suffering and the person who is causing it thinks we’re still laughing because they just don’t see us or hear us — or they do but they misinterpret the sound that we are making and they don’t see how much they’re hurting us.

It’s terrifying. And by God we want out. We want it to stop.

And what if, to literally add insult to injury, we had lived our entire lives on the other side of life’s power dynamic? What if control – of our environment, of our bodies, of ourselves, was precious and rare? What if we had lived our entire lives with people making assumptions about who we were and how we felt and what we wanted at any given moment? What then?

Then, when that imperceptible shift happens, when the laughter changes to gasping for air and what everybody else seems to think is still fun isn’t and instead it’s torture, all we would see in that terrifying moment is power and control – that they have always had and we haven’t. And while we’re on the floor begging for it to stop, what if someone else comes over to gawk? What if they look down and say, “Everybody else likes this. what the hell is your problem? You’re an adult after all; this should be fine with you.”

How can that possibly feel?

Letting someone tickle you makes you vulnerable. So does entering into a conversation about your life, especially when that life has contained its share of pain.

So that’s what I see. That’s what I feel when I watch these conversations implode. That’s why I get sad and frustrated and angry when the pile-on starts. In part because I don’t want to be painted with a brush of anger and distrust, but mostly because I never, ever want my daughter to be on the floor staring up at power. I never, ever want her to feel like she doesn’t have control. That’s what scares me the most. And that’s why I keep trying.

But am I trying to do the impossible? Are autistic/neurotypical relationships simply too fraught with danger to ever be comfortable? For a million reasons, I refuse to believe that they are.

I have been blessed by my friendships with autistic adults. I consider those relationships some of the greatest gifts of my life. Yes, they take more work than the average bear. I am cautious. I am careful. I work hard to avoid things that I think might be triggers. I screw up. I learn. I screw up again. And I grow. And what I get in return is staggering.

Friendship takes work. On both sides. When we need something, we have to ask for it. When we don’t understand something, we need to ask for explanation. We need to get to know each other slowly and diligently. We need to throw our assumptions to the wind.

And when the people in the relationship are neurologically diverse, we have to continually educate each other. And that’s tiring. But honestly, we (neurotypicals) get the easier job. By a lot. Because it’s far more tiring when you’re the one who is constantly explaining – not just within the confines of one relationship, but everywhere you go — when you have no choice but to educate just to survive. I can only imagine just how exhausting that must be.

As neurotypical people who enjoy the luxury of our neurology being the norm, I think the least we can do is recognize just how God-damned tiring it is to be on the other side of that equation. How much these people give every day — to us, to our children, and simply to live. At the end of a day spent navigating the NT world, my girl is cooked. She’s got no more in her. And while, God-willing, she’ll continue to fill her toolbox with tools that will make it easier by degree, that will always be the case. Because she will not outgrow autism.

I’m going to say that again, because I think that, as much as we all say that we know that, we need a reminder. Our kids will not outgrow autism. I think that sometimes we look at autistic adults and forget, or refuse to acknowledge, that they are still autistic. That they demand and deserve the respect that comes with maturity but that the fact that they reached adulthood doesn’t mean that they now have the miraculous option of being – or even acting – neurotypical just because it may be more palatable to the rest of us. It just doesn’t work that way. And it shouldn’t have to work that way. Isn’t that exactly what we’re all striving for for our children? For humanity? A world that doesn’t work that way?

Everyone has to take part if we are going to make this work. I don’t claim to have answers as to how to go about it. But what I can tell you is, from my perspective and my experience, why my friendships work.

I ask questions. I want to know how I can accommodate. Are you comfortable? Would you prefer that I do something else? Should I use different words? LESS words? I ask because I know that not everyone is comfortable asking for help / accommodation until we make it clear that we want to know.

My friends tell me when I screw up. And they give me the benefit of the doubt when I do. This is big. And necessary. Feelings get hurt by inadvertent insensitivity. (See last week.) And, with no context, inadvertent insensitivity can look exactly like purposeful ableism. Or worse, bullying. Or worst, bigotry. A conversation about something that was entirely unintentional can not only shut down, but go up in flames when kindled with the assumption of intent. I have had friends say, ‘The way that I’m reading what you just said is really hurtful. Is that what you meant?” Those moments have been watersheds. We’ve learned about one another, and from one another. And avoided the same missteps in the future. It would be wonderful if every conversation went that way. But they won’t.

Because restraint can be hard – and sometimes impossible. Because emotions run high. And cues are missed. And when the tickling has already turned to torture, it can be nearly impossible to continue – or start – a calm dialogue about why. And, from my perspective, It’s up to me to remember that. That’s part of accommodation. It’s part of what I give to get. And again, I get an awful lot.

I get guidance and insight and perspective. My beautiful daughter gets people in her family’s world who look like her. And above all, we get unique and wonderful, caring and compassionate friends.

Yes, it takes a little more work than the average bear. And it is, without a doubt, worth the effort.

~

Ed other note: Please do not ask for specifics about last week’s skirmish. I kept this intentionally vague because the details aren’t the point. I have no intention of reliving it nor am I taking sides. I like and respect both people involved and I know that the hurt was unintentional. I also know that it was very real. But it matters not who they are now because it was only about them until it wasn’t.

Also, please note that ad hominem (not even attacks, but anything referring to anyone by name) or mean-spirited comments will be deleted without debate. I will not allow my comment section to be a platform for the anger which keeps us divided. If you have any questions, please see Diary’s comment policy.

Thank you for understanding why it’s so important to me to keep the dialogue here respectful.

~ Jess

25 thoughts on “an exercise in perspective taking

    • thanks, but this isn’t about me. i was hurting for the community. for those who were in the thick of this. for what it all means for my kid. once we make it about us, we lose the point.

  1. Your points are all well taken. As always, I am struck by your insights although, I shouldn’t be by now. I am also impressed by your strength of character, but once again, I shouldn’t be because it shows all the time.
    It’s great to be your dad even if it takes effort to keep up with you.
    If I ever needed support for anything I would want you in my corner every time.
    Love you,
    Dad

  2. In my hometown it snowed briefly yesterday, a special school was closed due to heating failure and the online facebook post from the town then became a tirade against teachers, everyone had a point of view, some sensible and diplomatic, some extreme…nobody’s child even attended this school but it was a good example of assumptions being jumped to, or how simply a huge argument could ensue from a smattering of snow….to a diatribe on the professionalism of teachers. Literally gladiatorial. Scary.

  3. Thank you, Jess, as always for your perspective. Today I needed to read this… insight for my own path here at home. ~dawn xo

  4. I think it’s vitally important that we all approach autistic adults as we would want someone to approach our own child in a similar situation. I also think that it’s important that we maintain an open dialogue – complete with give and take from both sides – to keep the conversation going. As a mostly NT (it’s debatable) adult, I fully admit that I do not always understand the specific needs of autistic adults I interact with in each scenario, especially given that those needs change from person-to-person and interaction-to-interaction. That’s why it’s critical that we, as parents, take the time to ask, “Can you tell me what I might have done better in this situation?” when confronted with the possibility that we’ve caused offense to an autistic person. It’s then critical for that autistic person to help us understand how to approach that interaction differently so that we can learn.

    We need to keep talking.

    Like you, my heart really hurt because of this situation, and I largely kept out of it for fear of “stirring the pot”, so to speak. I think that it’s important that situations like this do not break down the dialogue between autistics and parents, because it is only through those interactions that we will come to a greater understanding of our children and what needs to happen for our community moving forward.

  5. Honestly, it’s scary how mean people are, just for the sake of being mean. Just for the sake of stirring the pot, regardless of the intended target, autistic or not. It makes me sick to my stomach, imagining a day when my daughter is at the receiving end of something like this.

    When two people have a problem, and are able to work it out, that should be the end of the story. I don’t understand the “piling on”. I know what happened. I saw things that were said. It makes me think twice about wanting to be part of the online Autism community. This isn’t high school. It’s not a popularity contest. We are adults. It’s one thing to stick up for a friend, it’s another to deliberately hurt another person. Or, to fan the flames after things have settled down.

    Seriously, if PARENTS are unable to show compassion, what chance do our kids have? None. And that’s too sad to think about…

  6. As always, a great post that makes me think….thank you. With close to 30 years of experience on this subject, here’s what I put together during many a wound-licking. With any relationship, trust is the key. When you trust someone, the guards go down and you become more of who you are. When people are very similar in their thinking and backgrounds, this takes the relationship to a deeper level. Ironically this comfort level means people can say what they feel, without the benefit of filters…which means you’re going to unintentionally catch a few right between the eyes. Sometimes I have to step back and heal, but I’ve also realized the only thing that got hurt was my pride, not my body or soul….just that stubburn little streak of pride that has survived over the years. If that pride gets in the way of relationships, then it’s not all that helpful anyway, and thouh painful, needs to be chinked away. To think of that growth process involving social media makes me shudder. Thank heavens I didn’t have that layer to deal with on top of it all.

  7. I just had to say that the tickling analogy is perfect…something that even a neurotypical person can “get.” That IS a horrible moment, when it keeps happening, even when no one is laughing anymore. Lord, my flesh is crawling just THINKING about it. It makes me think back to many things that have happened in my own home over the last few weeks…with holiday chaos, and mama being horribly sick for a couple of weeks, and all of us being completely and totally out of whack…and how impatient and frustrated I have been with the reactive behaviors and meltdowns and so on. I set the tone for our home and the individuals in it. EVERYONE else follows my example. When I am throwing that power around carelessly, it only damages…it never changes the situation for the better. GAH, I need to get centered and begin again and be a better leader by example. Thanks for the moment of intense self-examination!!!! Painful, but needed!

  8. So well said. Sometimes I watch these kinds of conversations unfold on the Internet, and it instantly makes me think of road rage. Like when a business man is sitting in traffic screaming profanities from inside his car at the 80 year old woman in the car in front of him. He would never act that way in person, but from the relative safety of his car, tempers flare. Unfortunately, it seems the same holds true for these online communities – folks wouldn’t say half the things they say online in the context of an in-person conversation. We all need to be more sensitive and remember that we are all part of this community in some way – we all want that connection, that support, or we wouldn’t be here talking about it. We just need to remember that there is another human being on the other side of that conversation.

    • Road rage is such a good analogy for what can happen online. It’s horrible. But I do think the tide might be shifting a bit as many websites don’t allow anonymous comments anymore. And I hope that all my lecturing to my kids about never posting online anything they wouldn’t say in person sinks in.

  9. Good insight. But I have to say I can run into plenty of drama with NT friendships as well. I can think of a couple that take a lot more work than, as you put it, the average bear, because of the quirks and personalities and outlooks involved. Really, for all friendships, a little compassion can go a long way.

  10. I like your post, you seem to grasp things that many people who have known people like me for years and seen autism first hand still don’t get.

    I agree with most of your post, but I wish people wouldn’t make so much of “but they have good intentions”. Good intentions are only good for one thing, giving the person who has them warm fuzzies. To be honest, I find them to act more as blinkers, many allistic people who think of themselves as having good intentions, stop thinking about communicating with autistic people and assume that their good intentions are a magic anti-privilege and anti-being hurtful shield.

    “but they’re well intentioned” is often used to excuse people as well. As if somehow it makes it all better and is often said to us autistics with that unspoken “you’re being unreasonable by being upset/hurt/offended/triggered” piece on the end tone. This is part of the dialogue often directed at us, so “good intentioned” becomes a term of reproach, a term of “if only we were better autistics, we’d understand their good intentions and forgive them.” so it’s kinda problematic.

    That’s just my two cents though.

    • Your two cents are greatly appreciated. 😉

      And I think this was indeed an issue in the conflict, so it’s really important to know and think about.

      Thank you.

  11. Thank you for this. Have to disagree with the tickling metaphor only because tickling is never fun for me. But yes, all of this.

    Never fear – NT/autistic relationships are possible. I am married to an NT. Some of my dearest and oldest friends are NT, including the one who watched me throw my laptop across my dorm room in the middle of a meltdown (and amazingly, she wasn’t afraid and she comforted me afterward). I unknowingly offend them sometimes, because I miss things, like sarcasm or what’s appropriate and when, but we communicate, and we work things out.

    Thank you for being one of the good guys.

  12. I’m sorry you need to play mediator (AKA “comment deleter”) sometimes, but I appreciate your commitment to keeping this space safe for your readers. It means a lot. And it keeps me engaged. If I want to be judged harshly, I only need to look as far as my own inner voice.

  13. Thank you for so eloquently putting into words that myriad of thoughts that have been rattling around in my brain.

    It seems that so many of our structures and systems – such as school and social relationships – seem to be set up so that in order to successfully navigate them people need to approximate typical. That needs to change.

    Essentially, the model is upside down, so that those with the social-cognition challenges have to do so much of the work – while those of us with social-cognitive strength – are able to sit back and do very little.

    Sometimes when things go sideways, we can be overly protective of our rights within our explicit and rigid social constructs. If we think rigidly and act rigidly – as though there is only one ‘right way’, and if at the same time we cling to our right to feel outraged at some perceived (or even real) transgression, then we are actually perpetuating the very thing we would rail against were it done to our children. We need to be able to think flexibly and work extra hard to understand the perspectives of adults on the Autism spectrum.

    Wait…

    It is ironic, isn’t it, that these are the very skills and thinking strategies that I am working so hard to teach my son.

    My boy is 14 now, and adulthood is perched on the horizon. I daily face the realization that ‘cute’ buys much in the way of accommodation… but that as the adorable slips away – so does the tolerance of others. We need to examine this deeply… because that same adulthood is perched there for all of our children – and I don’t know about your kid – but mine is growing up to be an Autistic adult.

    And frankly… I couldn’t be more proud!

    I will be sharing this wonderful post widely!

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