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.