Autism and Boundaries Part 1: Losing Friends

 As always, names and details changed to protect others' privacy

A few weeks ago, I invited my new friend and fellow autistic, Lisa, to my upcoming birthday gathering; she RSVPed "yes." When the day arrived and she didn't show up, I texted her and asked what happened. No response. A few days later, I asked Lisa if she was okay. Still no response.

Finally, I realized that I had to pose a question that I am all too used to asking: "Did I do something to upset you?" It turned out that I had. So what did I do?

A few days before the party, Lisa mentioned in a text that she was going on vacation to Los Angeles. I had written, "Oh, cool. You can stalk some Hollywood hotshots! ;)" Despite the absurdity of what I said combined with the winky face at the end of the text, Lisa thought my joke was a serious suggestion. She said it made her "extremely uncomfortable." I was absolutely floored by this. I told Lisa that it was a joke, and that I'd never seriously suggest that anyone should stalk a Hollywood actor (or anybody, for that matter). Lisa said that she didn't know that it was a joke. Now, I realize that Lisa is one of the more literal autistic people I know, but I didn't realize that she was that literal. She then went on to say that I shouldn't joke like that. 

Lisa and I talked a little more, and she also said that in addition to being uncomfortable with that kind of humor, she was uncomfortable discussing politics. I told her that if it bothered her that much that I wouldn't make such jokes and I would not discuss politics. She then asked me not to joke with her at all. I told her that while I could promise not to discuss or joke about certain topics, I couldn't promise that I wouldn't joke about anything-- it just wasn't realistic. 

Lisa responded, "I don't understand why you won't respect my boundaries. If you can't respect my boundaries, we can't be friends." I again reiterated that I would not bring up certain topics around her and then tried again to explain why refraining from joking around entirely was unrealistic for anybody. No response.

The friendship was over. 

My parents, therapist, and others were quick to reassure me that I did nothing wrong, reminding me that Lisa was obviously the type of autistic who was very literal and who approaches life with an exceptionally black-and-white mindset. But it did very little to make me feel better. This sort of thing where a stupid, throwaway commented ended a friendship or otherwise cost me socially has happened countless times-- usually with neurotypical people. I immediately think back to a painful incident from thirty years ago, when I was fourteen years old.

The girls in my eighth-grade history class were going on a three-day camping trip to Historic Williamsburg (the boys would be going the following week). I was looking forward to camping out in a tent with my friends Kat, Khalia, and Torey. On the morning of the trip, I sat in homeroom next to Kat, who inhaled the scent of her winter coat. "My coat is fresh out of the dryer," Kat said. "It smells like my grandmother's house."

Amused by this oddly-specific description, I quipped, "Oh, you mean like old people?"

Kat exploded: "What the hell? You have no respect for your elders! For your information, my grandmother keeps her house clean!" I tried to explain that it was a joke about the famous, well, old-people smell, not a jab at her grandmother and her cleanliness. But every attempt to deescalate the situation just served as more proverbial rope to hang myself. "You have no respect for your elders!" she said again. "At Aviva's Bat Mitzvah you laughed and said, 'Oh, look at all the old people dancing!' Someday you'll be old too!" She turned away from me and lay her head on her desk. "Don't talk to me. Just leave me alone."

Once we were on the bus, I sat alone and took out a book to read. Kat told the other girls in our friend group about the horrible thing I had said. As we began the journey south, I knew that I was in for a long three days. When when stopped for lunch at a picnic area a few hours later, things got even worse. Unsure of where I should sit, I took my chances and sat with my tent group along with our other friends, Aviva and Gerri.

Torey said to the other girls, "Have you guys seen that new student teacher in the other history class? He is so cute!" I remember feeling uncomfortable, because I hadn't had my first crush yet-- and everybody knew it-- and all the other girls' lives seemed to revolve around "cute guys." I chuckled, not sure what else to do. Wilma, a girl who sometimes hung around with some of the girls in my friend group-- and who I never got alone with-- turned to me and said, "What, you don't like guys?"

"What the hell, Julie?" said Kat. "Why don't you like guys? You need hormones!"

With a taunting edge to her voice, Wilma asked, "You're not interested in guys? Why not?"

"I don't know," I said. I tried to laugh it off-- this was advice many adults had given me for handling the taunts of other kids. But it never worked, and I know that it always sounded forced.

"I told you," said Kat. "She needs hormones."

"Or maybe she's just a lesbian," Gerri said, in mock defense of me."

"Maybe she isn't interested because she hasn't gotten her period yet," said Wilma. "I got mine when I was nine."

With a mouthful of turkey sandwich, I made a vague, "Eew," sound. I thought it would be horrible to get your period that young.

"'Eew?'" said Wilma. "Hello! You're fourteen years old. You should be getting your period by now. And if you don't get it by the time you're sixteen, then there's something wrong with you and you have to go to the doctor."

All of the other girls laughed at this comment. I opened my mouth to explain that I got mine when I was eleven, but Kat was on a roll: "So, she needs hormones, she's a lesbian, and she hasn't gotten her period yet!"

Once again, I tried to laugh it off. But of course I was completely transparent.

After lunch, Kat got up from the table. I followed her to try to make amends. "Kat, are you still mad at me?" I asked.

"Oh, leave me the hell alone," Kat said, barely looking past her shoulder.

"Look," I said. "I'm sorry. I didn't mean to insult you this morning."

"Shut up and leave me the hell alone," said Kat.

Wilma stepped in and said, "You heard her! Leave her the hell alone, or I'll beat you up!"

At the campground that evening, there was more friction as we tried to put up the tent. Kat kept telling me I wasn't helping, that I was doing it wrong, and that they didn't need me. At a loss for what else to do, I found my teacher, Mr. Henn, hoping he could mediate. He asked Kat what she was upset about, and Kat said, "She insulted my grandmother. All she ever does is insult people!" 

Mr. Henn said, "All right, it sounds like you two had a misunderstanding. Why can't you just bury the hatchet?" I wanted to, but Kat didn't. The mediation only resulted in Kat saying, "Oh, fine!" when Mr. Henn finished by pleading with both of us to try to get along.

A little while later, Aviva ran up to me and said, "Kat says that you made fun of my grandparents at my Bat Mitzvah." I was absolutely floored that a comment about "old people dancing" was somehow misconstrued as a personal insult directed at Aviva's grandparents. 

The rest of the trip was a nightmare. Kat only talked to me if she wanted to insult me. My other friends either did nothing, or they joined in on the insults. When I discussed the incident with my parents at home, they told that my comment that upset Kat was extremely inappropriate. 

Mom shouted, "There! You see what you've done? We try to give you advice, and you don't take it! This constant joking has to stop!"

Dad added gruffly, "Let me tell you something. Kat was right. She probably said to herself, 'There's only one word to describe this person, and that's 'annoying,' and she didn't want to deal with it anymore! I can't say that I blame her!"

"Did you hear him?" Mom yelled even louder. "Kat was right! We have always been on your side, always defending you, always going to the school to complain about other kids on your behalf, but now we are defending someone else's child!"

My appointment with my therapist wasn't better: he told me that my comment to Kat was inappropriate. 

Superficially, what it seems like it came down to was that Kat didn't want to be my friend anymore because my comment violated her boundaries. The other kids, my parents, and even my therapist seemed to think so. But right now, I'm sure you are noticing a lot of irony in what I related in this story. Well, stay tuned for Part 2...

Lessons About Meltdowns-- From My Cat

I wasn't sure what to expect when I brought my cat, Neptune, to my parents' house in Pennsylvania over this past Thanksgiving and Christmas. After all, he was sixteen years old, and he hadn't been to that house in ten years. Would he even remember it? However, I had to bring him with me: he has hyperthyroidism and needs to get a pill twice a day, and getting a cat sitter or boarding him (the latter of which I think would traumatize him) would have been prohibitively expensive.

What I didn't expect were the erratic behavioral episodes that Neptune had during both stays. One minute, he would seem fine, and the next he would growl and hiss in warning, not letting anybody-- including me-- near him. There were a couple instances where it was clear to me what he was reacting to. Once, my dad tripped over a chair in the dark and howled in pain, and Neptune was right there; Neptune obviously thought Dad was attacking him. There was another instance in which Neptune hid under the kitchen table and growled while the four of us sat down for dinner. The room has a twelve-foot ceiling, and I think the loud and unfamiliar sounds-- such as the clanging of the pots and dishes-- plus the approaching feet made him feel cornered. But there were many other instances that seemed to come out of nowhere. 

I had never seen Neptune act like this before-- not in the previous times he visited the house in his younger years, and certainly not in my apartment. During his stay in Pennsylvania, I didn't know what to expect from him. One minute, I could be petting him and he would purr; the next minute, he might growl, hiss, and swipe at my eyes if I got too close. My attempts to diffuse the situation only made things worse. Telling him, "It's okay, sweetheart," made him angrier and more aggressive. Scolding him and yelling at him didn't work either. What we eventually figured out was that ignoring him during these episodes was the only thing that was effective. If we did that, he was usually back to normal in five minutes.

Sound familiar?

Someone I talk to online, who suspects she herself is autistic, told me to think of Neptune's episodes like an autistic person having a meltdown. This made sense to me. Cats-- like some autistic people-- rely heavily on routine and familiarity. Unlike dogs, cats are by and large not novelty-seeking animals, and unfamiliar situations-- especially with excess noise-- can frighten them. This is especially true for older cats, like Neptune. I realized that the way we tried to handle Neptune's "meltdowns" were eerily similar to how the adults in my life tried to handle my meltdowns when I was a kid-- that is, they backfired spectacularly.

Adults saying, "It's okay, sweetie!" did not work. It made me more upset.

Adults saying, "You need to calm down," did not work. It made me more upset.

Adults saying, "You're acting like a two-year old," did not work. It made me more upset.

Adults saying, "You need to learn to control your temper!" or sometimes, "You need to learn to control your fucking temper!"-- Guess what? -- Did. Not. Work. It. Made. Me. More. Upset.

Am I making myself clear?

The problem was was that the adults unsympathetically viewed my meltdowns as childish temper tantrums rather than a manifestation of protracted intense anxiety, often over being left out of something, or feeling I didn't understand a situation, or otherwise having the acute awareness of being an outsider. For other autistic people, this may happen as the result of sensory overload, for example (I don't have the sensory issues, but many of us do). Overall, it is the result of trying to tolerate living in a world not willing to understand us, let alone accommodate us. I tried several times throughout my teenage years and into my twenties to explain to the adults in my life that my "tantrums" or "outbursts" (or some other label with a shameful connotation) were the end result of me trying to dam a raging river, the inevitable outcome being that the dam would burst. Unfortunately, they generally thought I was making excuses, not trying, trying to get attention, or just being "immature." Needless to say, I would feel like I lacked self-discipline, that I committed some horrible moral failing, and I would feel a sense of deep shame. I would vow to never let it happen again, while deep down knowing that it was only a matter of time.

So what does the situation with Neptune have to do with it? A lot, actually. Like it or not, people are animals too. The difference is is that a cat seeing another cat having a meltdown would react with aggression, and you cannot do anything about it. They're acting on pure instinct. However, as a more intelligent animal, humans can help each other to understand what is going on. They can make accommodations and help the person having the meltdown (after it's over) strategize what to do when they feel one coming on before it reaches the point of no return. Most importantly, in the case of Neptune and the case of me and others like me, these episodes have to do with anxiety, not maliciousness. When Neptune is in an environment where he's comfortable, he's as sweet as can be.

I said that ignoring Neptune's warning growls and hisses rather than facing them was the right thing to do. Obviously, this is because you can't have a conversation with an animal. You can-- and should-- have a conversation with an autistic person about their meltdowns-- rather than ignoring them, which could feel disrespectful-- but the point is that you should do it after the episode is over and the person has calmed down. It might help to say, "I understand this is hard for you right now. When you start to feel better, come to me and we can talk about this," or at least get them out of the situation that's bothering them so that they can calm down. 

I feel that I should further explain why addressing the meltdown in the moment makes things worse, even when "nice" words are used:

When an adult said, "It's okay, sweetie," what I heard was a sugar-coated way of saying, "You're overreacting and I have no concept of what you're upset about."

When an adult said, "You need to calm down," what I heard was, "Your emotions are making me uncomfortable and I don't want to deal with them."

When an adult said, "You're acting like a two-year-old..." God, did I hate this. I remember even trying to explain that two-year-olds don't have complex enough emotions to get upset about the stuff I was getting upset about. Thus, what I heard was, "We don't understand anything you're telling us, and your feelings about the situation are invalid."

And when an adult said, "You need to learn to control your (fucking) temper!" what I heard was, "I can't stand to watch you act like this. It's making me unbelievably uncomfortable and it needs to stop. This is about my needs, and yours don't matter."

What I realize now is that, whether adults meant to do it or not, they were making the situation entirely about me rather than owning their own discomfort and lack of understanding.

Keeping Neptune comfortable in whatever environment he is in helps to prevent his episodes. Remaining calm during his episodes when they do happen prevents them from escalating. 

And really, people are not much different.