The autism spectrum, and where anyone is “on” it, has to do, it sometimes seems, with those people’s thresholds for input. Autistic people’s thresholds differ from those of non-autistic people in many cases: thresholds for pain, interest, consciousness, and more.
Tuck has a different threshold than the “average” person does for temperature. If he gets too warm, he stays too warm, even after he’s taken off a layer of outerwear. When we saw a YouTube video called “Why Don’t Autistic People Wear Coats?” we squawked in joy — we had no idea it was a thing. It’s a thing!
We learned early on in his time in the household that he was not the person who should be drawing a bath, or testing the shower temperature, for the kids. But that, I guess, is more of an example of his threshold for physical pain, which is high. In his first holiday season here, we were in the same room, and he was grating potatoes for Hanukkah latkes. He cut himself, managed to text Ben and let him know the bleeding was not stopping, and decided that he’d need the stiptic or chemical treatment and asked Ben to pick it up at the store and bring it home (and had possibly had even Superglued his finger closed in the meantime), but I never even saw him react. He has told me that when he says “Ouch!” it’s generally his reaction to being caught off guard visually by the thing he’s about to trip over, or the door swinging at him, more than it has to do with pain. “Ouch!” is not an expression of pain — it’s an expression of surprise at an object that is coming closer.
As with many Aspergians, Tuck’s threshold for maintaining interest in a topic of study or conversation at times seems inexhaustible. I feel I may have used this as an example in an earlier post, but once Béla got to sit with Tucker and go through all his Magic: The Gathering cards. This began as a tremendous treat, and ended with a drained and subdued Béla telling me that he’d had fun, but that he had “started to miss his family.” (We were all visible, two rooms away, but were unreachable, just beyond the crest of Tucker’s enthusiasm for his subject).
A few months ago Tuck cut off his beautiful long hair, and Claudia remarked that “now his bruises show more — and spots he picks at with his fingers.” We talked about reminding Tuck to use fidgets, and to not pick at skin (the effects of which are definitely more noticeable without the distraction of the long giant golden mane.) I tell Tucker not to pick a lot — and to switch to a fidget — but I often feel guilty about this. Am I supposed to feel guilty about letting him injure his body, or not letting him injure his body? Before he lived here, he was prone to staph infections because of the picking, and has said his socks were often blood-stained. Why do I still feel like I’m denying him some part of his autistic identity by asking him to switch from his lip to a fidget?
There are days where it is hard to face the reality that I will be suggesting this change, forever, and that he’ll never entirely internalize the “solution” of using a fidget instead of his skin. But if I’m reading or working on my laptop, I, like I presume many people, can’t always tolerate the sight of someone plucking in my peripheral vision, particularly knowing it might unwittingly be leading to injury. (Tuck has at times peeled at his thumb to the point where his iPhone would no longer recognize his print.)
What about his need — it’s a real need — to talk about science? In great detail? Hopefully, he will someday be employed in a way that gives him lots of people to talk to science about, but I have a feeling he will come home still wanting to talk more. With us. Because he loves us. And wants to share the thing that he loves most in the world with the people he loves most in the world. Beautiful, right? I agree.
Where is the tipping point where it’s okay to say, “I can’t take another minute of this and haven’t understood the last FORTY minutes”? Ben and I had tried, early on in his time here, to institute a checking system, not just for home but for out in the world. We had strategized with Tuck that if he was talking, and the person he was talking to responded with “uh-huh” three times in a row, that he should pause in his talking, and re-assess. Was the person he was talking to waiting for their turn to speak? Did they have a question? Had they used the pause as an opportunity to leave? We never got enough data to say whether this strategy works or not. Tuck’s hindered ability to track whether he has been talking for a minute or an hour means he can’t count “uh-huh’s” either.
Sometimes, I will test — just how bad is he at reading non-verbal cues? If he’s going on for a long time talking about something, what happens if I actually start to pantomime, beyond what could possibly be considered polite or even civil, boredom? If I stop saying even “uh-huh,” and just fail to look up at all, continuing to type on my computer. Sighing audibly. Or, looking him in the face, and shrugging.
There is a point where I can see that he can see, “something is wrong”. But it seems that his interpretation is “Amber is unhappy/in pain/ worried about something”, and he does not relate it directly to the last twenty minutes he has spent telling me about something to which I’ve had literally no positive response, nor even shown signs of comprehending.
Am I bad because I just can’t? I just can’t do a lot of things. I get overwhelmed by sensory stimulation easily. My kids certainly know that if they are dialing up the noise and the goofiness, and then the dogs start barking, or somebody knocks over a glass, they better start to dial it back themselves. Not out of fear of punishment — but to help me. They have seen too many times the exact straw that breaks the camel’s back, and pushes my irritation and fluster into a full-fledged migraine.
My dad was very, very into TV. He watched specific shows over and over again, whenever they were broadcast, whether he had seen them once or fifty times. He had set up a timer so that he could watch re-runs of NYPD Blue on every station they were being broadcast — I think the most he found was three times a day — even though he owned the entire series on DVD.
Often, my dad would say to Ben and me, “There was this line I loved on Seinfeld last night.” (He didn’t bother to pretend it was anything new to him, or ask if we were already familiar with it, or if he had already told it to us.) And he’d begin to give the setup for the line and then say, “No… wait. Well before that…” and would continue to backtrack, further and further, like some horrible Chutes and Ladders game, until he would finally apologize — “This is the only way I can tell it.”
“This is the only way I can tell it.” These are, if not the exact words, as close to them as anyone could possibly come, used by Tucker the day he came to our house to say goodbye before leaving for his freshman year at Georgetown University. All incoming students had been assigned a novel to read. Tuck sat at the kitchen table — having just received the afghan I had knitted him as his going-away present — and tried to tell me a little bit about the novel. But kept moving backward. And backward. Until he was essentially reading me the novel from memory. And at one point he stopped, and looked both agonized and apologetic, and said the very same thing — “This is the only way I can tell it.”
What do I do when the only way he can tell it is exactly the way I — or others — can’t take it in?
Earlier this fall we decided to have Béla evaluated for both Autism Spectrum Disorder and Ehlers-Danlos Syndrome. He has neither. We knew that they were sometimes seen together, and we have seen him do some pretty amazing things stretchyness-wise (enough to make me feel faint, but not enough to impress anybody at CHoP). His ability to describe how things are engineered, or to describe how manifolds are made, when these things are not even visible to observe, is pretty impressive. Cut any size of piece of cake or casserole out of any pan, and Béla will look at the remainder and tell you how many equal-sized pieces are left to the one you just took. And a few months ago, his total failure to understand a homework assignment about idiomatic speech — specifically hyperbole — had us perplexed and kind of amused. (Tucker: “If you had a stack of books that was so, so heavy that it was going to hurt to carry it, you might say…” Béla: “‘I’m not going to pick that up.'”)
Ben took him for evaluation, and he came home with a Rice Krispie treat, and no pamphlets or next steps.
I will never stop wondering what would have happened if Tuck had gotten earlier intervention.
It was interesting to me to learn about weighted blankets, and to order one custom-made for Tucker’s twenty-first birthday, after reading so much about how weighted blankets were “good for” autistic people and made them “feel better”. We all tried the blanket out when Tuck got it for his birthday. We all agreed it felt pretty good.
I was lugging it up to my own bedroom long before I started to see the corroborating articles about weighted blankets being good for people with PTSD. Or generalized anxiety disorder. And what do you know — within less then two years, I was seeing articles that just talked about how weighted blankets felt good. For, you know, people.
Again — thresholds. I can’t say I know when Tuck chooses to use his weighted blanket or why. But if I’m lying down and not feeling well, it is Tuck who will suggest, “Do you want the weighted blanket?” and I’ll think, OH MY GOD YES I DO. It is Tucker who understands that I have hit a somatic threshold before I understand that I have — or, before I have the awareness that it matters.
This is a problem with neurotypicals. We forge ahead regardless of what our senses are telling us.
One night a few months ago, I was walking to bed, spooky novel in hand, when Tuck stopped me and told me, in hour-by-hour detail, his entire high school schedule. I still don’t know why. I smiled and nodded; I moved from room to room; I checked my phone. When he would pause, looking for responses, I would either say “Uh huh” or “Well, that was a long time ago, huh?”
Eventually, it petered out, and he then asked me if I wanted to look at plans for a mask he was designing.
I said, “Only if they involve not much talking, because you just told me your whole high school schedule, for a really long time, and I’m pretty much done listening for now.”
I told him he didn’t need to be sorry. He doesn’t. I had not stopped him. Should I have stopped him? There are times when I do. There are certainly times when I say, “Okay, this seems like it’s going into much greater detail than I can process right now.” Or, “Look, I had thought you were just making a quick observation, but as you see, I’m writing, and I need you to wait to tell me this later.” It can be very frustrating — what is a clearer signal of business than someone typing on a laptop? — but Tucker does not always say “Excuse me,” or “Do you have a minute?” Maybe 50% of the time now, he will say “When you have a moment, can we talk about something?” But the rest of the time, he just forges ahead, knocking the next words I wanted to type right out of my skull.
I cannot imagine what is going through his head in those moments, where he is talking and talking, and pausing, specifically, for feedback, and getting very little. What does that dearth of enthusiasm look like to him? If I ask him, he can’t tell me. He knows what it looks like when I am enthusiastic. But when I’m not, whether he can tell or not, he cannot switch gears, or ask “Is this not interesting, or too detailed, or too scientific?” There have, in fact, been times where he’s said, “Can I tell you about this one problem on the test?” and I’ve answered, “I’m not going to understand it, so I can’t really listen that well,” and he’ll say, “Can I tell you anyway?”
Obviously the hope is that Tuck will spend his working life surrounded by people who can have the kinds of conversations he wants to have. And that in doing so, will not always have to bring them home and tell them again just because they are still going through his head. It is beyond the threshold of what his relationships here will be able to tolerate, and what I presume a number of other social relationships would be able to tolerate. But in other cases, some of them current, that enthusiasm for the subjects he loves will be the glue that holds his social and professional relationships together.
We make allowances for what Tucker can handle in sensory situations, social situations — and think it matters that he take other people’s limitations into account as well.
And let’s not pretend for a moment that we are talking only about Tucker’s limitations. My training in NT communication has not served me well in communication with other people on the spectrum, much less Tuck himself. A regular issue at home: no matter how many times I say, “I could really go for nachos,” “Don’t nachos sound good right now?” “I’m going to die if I can’t get nachos,” “Wouldn’t YOU love nachos?” Tucker will only eventually say, “Look — are you asking me to call and order nachos? Because I honestly don’t know.”
And it’s true. He honestly doesn’t know. He doesn’t have any reason to know. For ninety percent of the times he’s interpreted my vague suggestion as a call to action and actually ordered the nachos, I’ve chided him for so swiftly abandoning healthy eating goals.
I’ve lived with Tucker as a family member for going on four years now. We have a lot of guilt-free, laughter-filled conversations about what we can and can’t tolerate about how the other communicates. This week, in my Facebook feed, there were a number of articles reacting to a recent study about social reciprocity between autistic people and neurotypical people and frankly, the NTs are showing a low threshold for patience, trying to take an interest in what isn’t already an interest to them, and judgement of whether or not a person will make a satisfactory “friend”. Neurotypical Peers are Less Willing To Interact with Those with Autism based on Thin Slice Judgments from (Nature magazine) is a very scary and heartbreaking title to me. It exists.
It’s become an actual meme, folks.
Tucker’s threshold for forgiveness — and resilience — also is much more generous in quality and quantity than my own. I am lucky that he puts up with me, particularly in years of his life when he has made it demonstrably clear that there are plenty of behaviors and people that he will not put up with.
And I still want a world where people do better than I am capable of doing. I’m not proud of this. It’s not just for him. It’s to take the heat off of me as well. And, often, it’s to ensure that I have the spoons left for the kids, for Ben, for myself, and for Tucker the next day.
I want to listen. I want to want to listen. But the only thing I can really count on myself for is to try to listen.