what is it like?

Driving on Sunday …

Me: Ooh, that’s a pretty color, isn’t it Brooke?

Brooke: Yellow!

Me: Hmm, that’s funny, I thought it was kind of orange.

Brooke: It’s yellow!

Me: You know what? We had different perceptions of it. Do you know what that means?

Her: What?

Me: It means that we’re looking at the same thing but we each see it in our own way. Your perception of it is that it’s yellow and mine is that it’s orange. So we have different perceptions. I think that’s kind of cool, do you?

Brooke: Uh huh.

The other day, my friend, Kate sent me this beautiful post that she’d written about the intersection of authenticity, vulnerability, connection and autism. When I told her how much I loved it, she responded with a question.

Can you tell me what it is like and how it is like when NTs connect? How is it different than autistic connection?

(ed note: NT means Neurotypical, or, in this case, non-autistic people)

I stared at her words on the screen. I almost wrote back. “I have no idea.” I stared again. I don’t know how to describe what simply is. I don’t know how to explain how it feels to be the only thing I’ve ever been any more than I could describe the color blue without relating it to other colors or to answer for water what it feels like to be wet.

I don’t know what the difference is in what I feel from what any other person feels because, really, no matter how many words we may use to try to approximate feelings, aren’t we all just really making a whole lot of assumptions that the words we use represent the same experiences? I mean, What is it like to connect with another person? Um, it just, ya know … is.

I wanted to write back some sanitized version of all that, but before I could type a word, a thought came hurtling at me at warp speed and knocked me off of my feet.

We (in this case meaning neurotypicals, and even more specifically, non-autistic parents of autistic children), ask these questions … all … the … time. We ask autistic adults to explain their experience of the world in relation to our own. We try to get our children to articulate, in words or otherwise, how it FEELS to be them, compared to, you know …. us.

The thought flattened me. Jesus, we’ve been asking a lot.

So I dug deeper into the muck, because I can’t refuse to answer the very questions that I ask and upon whose answers I so heavily rely. I went mining  below the surface – below the I don’t know, and the It just is, beneath the Water is wet and the Blue is just blue. I dug deeper into the space where words don’t usually find their way – the place where feelings are pure and unadulterated by vain attempts to describe them.

I let the sediment settle in my hands, the heavy mud slipping though my fingers, messy and grimy and oily. Finally, when enough of the gunk was gone, I began to filter the weeds from the silt. What is it like to connect with another human being?

And here’s what I found, left in my hands, when all else was gone.

It feels like seeing and being seen.

It feels like recognition of yourself made manifest in another.

It feels like consideration.

It feels like missing, yearning, needing.

It feels like ease, like comfort, like home.

It feels like energy – swirling, whirling, twirling, dancing, resting, settling, quiet energy.

It feels like ideas – their very existence validated even if by disagreement.

It feels like respect.

It feels like care, like concern, like compassion.

It feels like awareness of an entire universe of need and wonder and thought and feeling and perception — all contained inside another human being.

It feels like warmth, like presence, like safety.

It feels like vulnerability.

It feels like an acknowledgement of shared space.

It feels like seeing and being seen.

But how it feels was only half the question. How, she had asked. How does it work? And how is it different from autistic connection?

This is a minefield, of course – this invitation to generalize, to stereotype, to divide human beings into neat little neurological groups, tidily label them, then make the same sweeping generalizations about them against which I spend most of my time railing. I’d have an easy enough out if I claimed conscientious objection to the exercise.

But again, isn’t that what we NTs ask our autistic friends to do ALL THE TIME? Yeah, it is. And so, in the interest of answering Kate’s question as honestly as possible, I will do my best to articulate what I have perceived to be some general differences between NT relationships and those in which at least one party is neurodiverse.

Again, this is based only on my own experience and is NOT gospel. It may not be even remotely representative of others’ experiences. That said, I hope you’ll offer up your own in the comments below. But this is what I’ve seen.

NTs make assumptions. We jump to conclusions. We assume that others are feeling and thinking and perceiving things as we are, so we don’t ask them. Most of the time, we aren’t even aware that we’re making said assumptions,  so we don’t voice them.

We so trust our magical ability to read body language, to notice and decipher nonverbal signals, that we don’t use the words that would ensure understanding. We miss a lot.

We cross wires and miss cues and say, “Nothing” is wrong when we mean, “Everything” is wrong, because we think that we shouldn’t have to say whatever “it” is out loud.

We expect our friends and lovers and siblings and children to read our minds and somehow divine what we want them, expect them, need them to do, without ever being told.

We break up with boyfriends and girlfriends and let friendships dissolve over things that we or they or we both … never said.

We create personas that we think that others will find attractive and when pressed for authenticity, we lie because we’re too afraid to face rejection as ourselves.

We trip over ourselves to be polite. We say that we like meals that we don’t because they were cooked with love and for years thereafter, we let the ones who love us pour their energy into making them again and again because we think it’s more important to convince them that they’re making us happy than to tell them how to make us happy.

We spend time together when we really need to be alone, because we don’t trust that we can love each other without being close enough to touch each other.

We doubt ourselves and each other constantly. Lying to spare feelings is still lying. Those who lie are not trustworthy.

The autistic people in my life do not lie about feelings. For better or worse, there is no pretense.

There is complete and absolute trust because what you see is what you get.

There are no assumptions. When you grow up knowing that your perception is different from most, you learn to ask – How do you see this? How does this feel for you?

There is an awareness that NTs don’t yet have that all of us are different from one another.

That assumptions are dangerous.

That we need to ask the questions and voice our thoughts (in words or gestures or otherwise) and find ways to assert our needs (and be open to hearing and listening and seeing and watching for those assertions in whatever form they may be expressed).

That we need to check in with our friends and our lovers and our children to see if they’re okay, if they have what they need, if what we are doing to help them is really helping or if perhaps it’s not really helping at all.

If the meal we’re making is one they’ll want again and again and yes, again, or if our time would be better spent on something entirely different.

There’s less resentment in every autistic relationship I have ever had because explicit honesty leaves little room for confusion and even less for doubt.

Sometimes autistic connections, for me, are simply about holding space with another human being. About moving together, dancing together, feeling something together. About joining in. About finding joy in the same thing at the same time. About slowing down to see the world from a different perspective. About watching fingers change the path of light through a window – together. About seeing dust motes dance in a shaft of light and thinking it might be the most beautiful thing in the universe. About touching the earth and peering under rocks and feeling each and every blade of grass within reach. About sitting together on the heating grate in the floor in the kitchen because it’s the best seat in the house. About playing a part in a script again and again and again because it’s an invitation to connect. About learning not to fight for one’s own language but instead to commit to learning another and together, creating a third. About hearing, watching, listening, seeing.

About slowing down and feeling something frighteningly, beautifully, overwhelmingly real.

In short, my connections with autistic people have taught me how to better connect with all people. Authentically, explicitly, slowly, respectfully.

My relationships with autistic people have changed me. And I couldn’t be more grateful to have been changed.

I don’t know if any of this will be remotely helpful to Kate.

But I knew that for all of those who try so hard to answer questions like these every day in the interest of helping to ease the path for their autistic brethren, I had to try.

Your turn. What does connection feel like to you?

37 thoughts on “what is it like?

  1. Well said, once again. I wish I had the time right now to aanswer that final question. Unfortunately, I don’t.

    Love you,

  2. Unfortunately I’m Aspie, so I can’t actually comment from an NT perspective. But I think you hit the biggest nail on the head – we don’t BS. Typically, we don’t lie or stretch truths. If we don’t like something, our answer is truthful… unless we’ve learned to adapt well, in which case we lie but you can clearly tell we’re lying!! Hey, you tried to teach us how “you” react to things, which is telling lies to not hurt other people’s feelings. If we lie and say we like something we don’t, we have adapted!

    I’ve also noticed that, when getting together with other Aspies, we can share a space such as a lounge room, yet be doing completely different things. I could be playing on my phone while another is on the computer… we share funny things we have found, and we chat while we do it. There is no awkward silences – silence is time to process. We don’t find the need to talk non-stop – silences are okay. There is no social pressure to look at the person all the time whilst you’re talking.

    Hope this is somewhat helpful.
    From a very-well-adapted Aspie.

    • My son is 9 and the first time he lied ( to avoid trouble) I was so excited. He rarely lies, but is so bad at it, you can always tell. He also has friends that he loves to have over, but then they all do their own thing. They will come together for a short time, then go it alone for awhile. So glad to know this is “normal” 🙂

      • Totally normal. And yes, teaching why we tell white lies is great. Once i understand reasons why, I find it easier to do.

    • Oh, thank you for taking the time to write this! I see it in my 10 year old but he’s never explained it to me. About being truthful – no joke there! If I want an honest opinion on something, he’s the first one I’m going to seek out, and I appreciate this! Congrats on working hard to be “very-well-adapted”, and yet keeping true to your Aspie roots. The world is better for it.

  3. For me, allistic connection depends on the allistic person I’m trying to connect with. Those who connect with me in my way, like my partner and a few of my friends, are… hm. Maybe it’s easier to try to start the other way around.

    With allistic people who insist I try to connect in the allistic way, it feels rather like a trained daredevil demanding that I try to cross a chasm by walking a tight-rope without a safety harness. Terrifying, risky, and so totally draining that I might have no energy for anything else that day. Very often not worth it.

    Autistic connection, then, for me, is a rope bridge over the chasm. It’s still a bit scary, especially if I don’t know the chasm or the bridge that well, but it’s not nearly as terrifying. There’s some risk involved, but not nearly as much, and while I would find mustering the energy to cross tiring, I won’t be completely wiped out at the end. Usually worth it. Sometimes still not. Depending on how much energy I have. But if I choose to cross, I’ll more likely feel happy and accomplished than so exhausted I just want to go to bed and sleep for 14 hours.

    Does my rather garbled metaphor make any sense?

  4. Growing up in a world where I was forced to act as if I was neurotypical (and I wasn’t), communication for me is this strange combinations of deception to protect someone’s feelings and brutal, sometimes painful honesty.
    I waited 4 years to tell my mother “It hurt when that happened.” I have some things that have occured, some feelings I have, some thoughts in this overworked brain of mine, that may never be expressed because of expectations. The fact that if I can’t act neurotypical enough I’d lose my job. (Yes I said it- PLS is not truly equal opportunity , especially in this economy.)
    Your post was beautiful and I loved it and it was epic. Thank you for reading this rambly comment.

    • This having to act a specific way in order to be accepted is the pain my daughter goes thru everyday and when it all becomes too hard that she has a melt down, usually at home, and all the pain comes out it breaks my heart. Your comment gives me some ease, thank you, in knowing that she is not the only one that feels this way, and that she can make it in the world despite the pain. And also, it makes me realize once again that it is our job, my husband, myself, and my families job to let her know that she is fabulous just the way she is and that being someone else is not needed with us.

  5. If rambly comments are your favorite you must love me lol.

    That being said i think nt and autistic connections can be alike…you meet a person and it’s just home…you see yourself in them and there’s an instant bond…the good connections anyway, the rest have to be worked at and that’s where it gets messy. My son’s best friend (who sadly moved away) wasn’t autistic that I know of but he did have some issues w learning, speech, etc. When my son unknowingly said mean things (whole other post in itself) instead of escalating and returning it he mostly ignored…that kid was the ONLY person I’ve ever seen my son play video games with without yelling (including me)…ok I’m rambling lol

  6. Jess, please consider compiling your writings into print if you haven’t done so already. If you have, would you please tell me how to access them?

  7. And your realization what we ask this of them constantly…yes. I’ve thought of this recently in light of a blog post I read but in terms of a project, a day, where I can only use AAC to communicate….I expect my 4yo to, so maybe I need experience with how hard it really is

  8. This is so many levels of awesome, I can’t even say. Thank you for another perspective shift that’ll give me a bit of another window into my son’s experience.

  9. This post touched me somewhere deep and important. I can feel myself tearing up not with sadness or even happiness, but I think with gratitude. So before I give my perception, let me articulate this very clearly and concisely: thank you for publishing this post.

    For me, the relationships I form are not distinguishable by whether the other person is autistic or NT, but whether I have disclosed to that person that I am autistic. Or before my diagnosis, whether that person was close enough in my life (a roommate, for example, or a friend that I shared all seven classes with in high school so we couldn’t escape each other) to understand who I was when I wasn’t hiding.

    When I have disclosed, or when I know I am not hiding, my relationships are based in honesty and truth and openness, almost to a spiritual extent. I am not spiritual or religious, but I like to imagine that the feeling I experience when I feel connected to someone through mutual truth and vulnerability is similar to the feeling many people find in religion. Spending time with these people, whether sharing an activity or conversation or silence, feels calming and peaceful and revitalizing.

    When I am hiding, my relationships are based in uncertainty and eggshells. I can certainly have solid and enjoyable relationships with these people – my relationship own mother would fall into this category, and many or most of the people I call “friends.” With these people, successful connection feels like putting up boundaries in just the right spot so that we both feel appreciated (I often have to clarify that they are feeling appreciated, but sometimes I can tell) but that also I am safe. These connections are more about mutual enjoyment, sharing a sense of humor, similar taste in tv and books…and less about who each of us are as people. I see these relationships as very worthwhile and important, even if I don’t feel completely authentic or trusting. With these people, spending enjoyable time together is draining instead of revitalizing, but it is often completely worth it as long as I can establish boundaries and escape plans.

  10. Jess! I am so very honored that you wrote this, and YES, it was helpful!
    I need some more time to process it to figure out exactly how but I know it was .
    When I read the first part where you said that connection was

    “It feels like seeing and being seen.

    It feels like recognition of yourself made manifest in another.

    It feels like missing, yearning, needing.

    It feels like ease, like comfort, like home.

    It feels like energy – swirling, whirling, twirling, dancing, resting, settling, quiet energy.

    It feels like ideas – their very existence validated even if by disagreement.

    It feels like respect.

    It feels like care, like concern, like compassion.”

    then I smiled with relief and thought “That is exactly how I would have answered the question!” In fact, I ‘m quite sure I used the “It feels like being seen, it feels like seeing yourself in another” quote in one of my ramblings about connection. So I was happy that we got the same end result even if we approached it in different ways.

    Being validated – being understood – being known – and sharing emotions about similar experiences – is what feels like connection to me, among other things. Relating to other people’s emotions – which is hard, frankly, because most people don’t *share* their emotions. But when they do – I love it.

    But then I read the second part of your blog – WOW. I hadn’t expected that!

    I think you are saying that because we tend to talk explicitly in all manners of our world we may connect more deeply than NTs. That was an idea batted around by another person I was talking to, the sister of someone with autism, but I wasn’t sure whether to believe her or not. This clarifies it tremendously. And I am just honored, so honored, and can think of no other word but that.

    Of course, as an Aspie I still have to live in this world. And as much as I may enjoy so much connecting as myself and finding authentic joy, it has lately come to my attention that there are some other efforts I need to do to be part of the world in a way that is “playing on people’s terms.” I am not able or willing to do too much to change – I need to be comfortable if I am able to be functional – but I am looking for some nicer clothes to wear for some social functions that I will be in. I don’t know why myself fashion is such a “thing,” why people feel the need to make themselves into like supermodels in order to go out, why there even has to be a concept for home clothes and going out clothes, but it’s what I’ve been mulling lately.

    But you can be sure I will be sharing this blog with others! Thanks, Jess!

  11. This line hit a nerve: “There are no assumptions. When you grow up knowing that your perception is different from most, you learn to ask – How do you see this? How does this feel for you?”

    Last night, I had a migraine–the kind of migraine where all you can do is huddle in the dark trying not to move and waiting for the meds to kick in. My 12-year-old son would periodically tip-toe in the room and say, “How are you doing, Mom? Are you feeling any better?” I would say, “I’ll be better soon, buddy,” and he would reply, “OK. I’m sorry you’re sick.” Then he would pause a beat and say, “Was that a nice thing to say, Mom? I think that was a nice thing to say.”

    And of course I would say, “Yes, that was a very nice thing to say. Thank you.”

    Because he really wanted to know! He was concerned about me (so much for that autistics-don’t-have-empathy nonsense) and wanted to show it. And he wanted to make sure he was getting it “right.” With the fifth or sixth repetition the whole thing was getting pretty funny and turning into a self-esteem session for him rather than a nap for me (“I was being really kind there, wasn’t I, Mom?” “Yes, honey, you were very kind.”), but I wouldn’t have laughed for the world–well, first because it hurts to laugh with a migraine, but mostly because he was utterly sincere. And I was touched.

    This was a a lovely post. And don’t you think that the best connections between people (spectrum or not) are those in which we can all clear away the BS and find our true selves honored? Thank you, Jess.

  12. this is quite stunning, really. therefore, i’m going to ramble. DUH.
    i’m always wary of the “NT people are conventional and fake, but autistic people are cute and genuine” generalization, but the way you describe your own experiences rings so true to me. the implicit expectations and assumptions in 95% of my interactions with NTs are like…killer. and those assumptions are nowhere near as common in my interactions with other autistic (or autistic-esque) people. my 2-3 of my closest friends are all autistic/autistic-esque people that i basically met, and within 30 minutes we were inseparable. but at the same time, when we’re in different parts of the country, we often don’t talk for months at a time. when we’re together, we can just exist in companionable parallel.

    one of my friends and i once decided to bake together, but we realized that if we tried to bake one thing together, we’d both go nuts because we’re control freaks. so we just baked two separate things, in the same kitchen, at the same time. another friend and i basically speak another language. we don’t do nouns, and most verbs are replaced with gestures or funny noises. we have a posture/gesture script which is made up of specific poses and little movements from a bunch of different things (work, a movie, a poster, some weird table-legs we saw once). we also have a bunch of call-and-response type scripts that we do. one time we played a game where one of us would make a weird face, the other would take a picture of it, and then they’d try to imitate the face, and the first person would take a picture of that face. and we just went back and forth like that.

    it’s not even about being “vulnerable” or “sharing” for us. instead of feeling like we are taking parts of our insides and giving them to one another, or showing them to each other. it’s more like, instead of feeling like my world is out of joint with other people’s worlds, i feel like i share a world with my friend, and we are responding to the same environment, hearing the same drum-beat. it doesn’t even occur to me to not be genuine/honest with them, because our relationship isn’t about exchanging feeling-bits in words as evidence of our investment…it’s about being accepting, and open, and responsive to the other person’s way of moving in the world.

    AAANNNDDD one time “friend one” and i spent a summer afternoon on my couch watching blooper reels from our obsessive/favorite tv shows, and the whole time we navigated youtube on my laptop only using our feet. one foot each. typing and everything. now that’s what i call “connection.”

    • “wow! i really like that. I especially like when you say “it’s more like, instead of feeling like my world is out of joint with other people’s worlds, i feel like i share a world with my friend, and we are responding to the same environment, hearing the same drum-beat. ” That I can relate to! It’s hard to find sometimes for me but I love it when I do.

  13. Autistic connection, to me, feels a lot like the way you describe non-autistic connection, only…it is so comparatively rare and you never, ever take it for granted. It’s not something you get to have every day; sometimes it’s not something you get to have every year, or every decade, and some people never find it in another person at all.

    It’s like…you’re accustomed to having to do all this work of mental translation and performance in any interaction or conversation with another person. But then you’re talking to this one person, and it just…stops. You realize you’re not having to do it. You can *just* understand someone when they talk, and know that you’re being understood and not radically misinterpreted when you talk. And that thing, that 99% of the population seems to take so completely for granted, is the most wondrous and joyful thing in the world.

    • I can completely relate to that. It is SUCH A RELIEF when you find that person!! I’ve only met a person that TRULY fits that description twice in my life (and they were amazing, wonderous experiences) but I meet people that fit it to some extent a little more often and I treasure them as well.

    • This this this. It’s why I feel the connection with other autistic bloggers so strongly.

      I love reading blogs by parents of autistic children as well (or else I wouldn’t be here 😛 ) but reading the words of other autistics is just so relaxing because I know I can count on the words to mean what I think they mean.

      • And when you haven’t had that for a really long time, it is a *really strange* and wonderful feeling, for other people’s words to actually match up to things that are real in your world.

  14. I 100% agree with you. While I do not have a child with Autism, I have a cousin with Down Syndrome and Autism. There are very few people that he is truly close to and who have had the privilege of getting to feel that connection with him… And I feel so completely lucky that I am one of them. I remember every single one of those moments of connection so vividly (not only with him, but with other people I have known with Autism), not just because they don’t happen all of the time, but because I have never felt so understood as I have in those moments. We don’t even need to be speaking to each other and it just feels like we GET each other. I don’t think I could ever describe it as nicely as you have, but yeah, that’s pretty much it… Seeing and being seen. It is seriously the most beautiful thing I have ever experienced.

    • I don’t feel connected to anything, really. I suppose that is why I feel lost, utterly confused, and so god damn angry that I smashed my Kindle to bits the other night after being told for the upteenth time that I was “not listening” (granted, I wasn’t listening to their command). I’m still sick to my stomach over breaking my beloved Kindle and allowing that much anger.

      It’s ironic that part of the reason I was so angry is one of the few people I could connect with, my dad, who passed away seven years ago. My mom understands me well, but we don’t connect on an emotional level (emotions are these giggly wiggly foo foo creatures that make me feel stupid – I’m missing a word). I know my stepdad cares me, but he chooses to neither understand nor connect with me (I honestly think that he doesn’t want me living here, based on comments he has said, and the fact that I keep all my “crap” where it belongs or on the unused table instead of the pantry).

      The other connection I feel is amongst fellow Aspies, but it’s based on mutual understanding.

      I feel nor desire connections. I suppose it’s a learned behavior that I learned when I was younger, after years of bullying and living with a dysfunctional family – if you act invisible and don’t seek that which can backfire and kick you in the gut, the safer you are emotionally.

      Very rarely do I make emotional connections that go beyond just a shared mutual understanding.

  15. here via kate, to whom i say “thank you for asking that! ❤ ". and jess? thank *you* for answering it and giving an nt perspective.

    it certainly resonates with me and explains a bit about why most nts are so difficult for me to understand.

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