Monday, January 15, 2018


Scared little girl. Image source.
[content note: this is a post about when I was in therapy as a child and it was extremely harmful, for reasons related to undiagnosed autism]

I was planning on never blogging about the time I was in therapy for globophobia. Because I don't want my mom to feel bad. My parents and the doctor really cared about me a lot, and were doing their best to help me, but actually that therapy ended up being very damaging for me. I'm just now realizing the long-term effects. I don't blame my parents at all, because they didn't know, so please don't feel bad. But I want to write about this in case it can help someone else in a similar situation.

So here's the deal: From the time I was a little kid, I have had globophobia, which is a phobia of balloons. When people asked "why is she afraid of balloons?" my mom used to answer "she's sensitive to loud sounds" and eventually that was the answer I too would give when people asked.

But the problem is that that explanation completely misses the point. Here's what's actually going on: I hear sounds much louder than other people do, and sounds like balloons popping, fireworks, explosions, etc cause overwhelming, unbearable sensory pain for me. Saying "she is sensitive to loud sounds" makes it sound like it's just some silly emotional quirk that's not really a real thing, that I'm weak and if I tried harder I could "get over it." No, what's actually happening is the actual reality I am experiencing is different from what other people experience. And my reactions- avoiding balloons, covering my ears- are totally reasonable in the context of that reality.

Back when I was a little kid, we didn't know that I hear the sounds louder than other people. Who would have suspected such a thing was possible? My parents didn't know, and I didn't know. I always hated how I had to tell people what the problem was- like, how was it not obvious? Did they not notice that huge, overwhelming, unbearable sound that had just exploded through the whole room? I spent my whole childhood utterly confused about how seemingly kind and compassionate people could be so unfeeling and unaffected. And I never said the words "I'm afraid of balloons" until I was in college. Because to say "I'm afraid of balloons" implies that my fear was an abnormal thing that other people shouldn't be expected to just know automatically. It would be like admitting that I was the weird one and there was something wrong with the way I reacted. From my point of view, telling someone "I'm afraid of balloons" made as much sense as saying "I don't like it when people kick me." Like, isn't that obvious? If you really believe that it's something you need to actually say out loud, that means you accept that your preference not to be kicked is something unusual. As a little kid, I refused to accept that. On some level, even though I didn't have the words for it, I truly believed my reactions were right, completely justified and reasonable based on the incredible pain caused by a balloon pop. (And please note: I was right, even though none of the adults understood.)

But anyway, when I was in middle school (maybe 12 years old), my mom took me to therapy for globophobia. I read about phobias online, read about how, with therapy, a phobia can be totally 100% cured. So that was the goal of the therapy. The doctor told me to make a list of scary balloon-related things, in increasing order of scariness, and we would slowly work our way up the list, becoming "desensitized" to each one.

And that treatment model was really really bad for me. Because what none of us knew at the time was, this wasn't just a phobia. It was not just in the realm of emotions, which can be totally cured. No, I experience unbearable sensory pain because of those loud sounds, and that's never going to change.

Unfortunately, the goal of the therapy was for me to "become normal." And it didn't really make sense to me, didn't seem possible, but I was a good kid so I went along with what the adults told me to do. But when I saw "normal" people barely react at all to the sound of a balloon popping- as I said, it baffled me. Totally, utterly baffled. (What's wrong with everyone???!!!) Like an unexplainable scientific phemomenon- we can observe it over and over, so it must be real, but it just makes no sense at all. I didn't really believe I could ever become like that. But my mom told me I need to believe it's possible, or else the whole thing is doomed from the start. And in the bible, God did miracles, and the recipients of those miracles probably could have never imagined it beforehand. The walls of Jericho fell down just because the Israelites walked around them- like, how? And so maybe, by following the steps the therapist gave me, trying to "desensitize" myself, I would become "normal."

In reality, the efforts to "desensitize" me to loud sounds communicated to me that my pain didn't matter. That I would just have to accept it when something hurts me, and I shouldn't react or expect other people to care. That's what the therapy was for me- though I'm sure the adults involved didn't know it. It was "sit here, relax, try to act like a normal person, and then absorb and suffer the overwhelming, unbearable sensory pain without bothering anyone else or making any visible attempt to protect yourself."

We didn't know that. I didn't know that, and I didn't have the words to communicate what was gonig on. I never would have thought to use the word "pain" to describe what I was feeling. Because sensory pain doesn't feel anything like the pain you feel when you fall down or hit your head or someone steps on your foot. How can you describe what a sound feels like? A sound feels like a sound; it's completely different from any other sensory input.

It wasn't until I was 23, that I went to a therapist (for a different problem) and mentioned how I'd been in therapy in the past for globophobia, and she said "that doesn't really sound like a phobia, sounds more like a response to pain from sensory overload, possibly related to autism." She was the one who diagnosed me with autism, and she was the first one to ever use the word "pain" to describe how I felt about balloons.

And at first I didn't believe it really was pain- because, as I said, it's different from all the other experiences that I've heard people describe as pain. But then I realized, if I had to choose between getting slapped, hard, in the back of the head, and suddenly hearing fireworks, well gosh, I don't know which is less bad. They are about the same. And it blew my mind to realize that for other people, those wouldn't be the same.

So let me make an analogy. Let's say someone steps on your foot, really hard. Everyone sees it happen.

And you say "OWW!!!!"

And then everyone stares at you, and they ask, "What? What happened?"

And you know that they saw this person step on your foot. You can't understand how they can be so dense as to not know the reason you're crying out in pain. But you say, "You stepped on my foot!"

And then everyone continues to stare, with a very confused expression, and they're like "... and? What's the problem?"

And you say, "That hurt!"

And everyone says, "No it didn't. You're overreacting." And they kind of roll their eyes, like "ah she got us all worried that there was an actual problem, but really she's just weird and overreacting to some harmless thing," and go back to whatever they were doing.

That's what it's been like, throughout my entire life, every time a balloon popped. And I haven't been able to put it into words until now.

Let's talk about gaslighting. Gaslighting means telling someone that their actual lived experiences, memories, or emotions aren't real. Like "you think you feel that way, but you're wrong" or "no, that thing that you said you experienced never actually happened." It's a tactic that can be used by abusers to get a victim to doubt their own mind. I wasn't abused; people did this to me because they really thought it would help. But it is gaslighting. My whole life, everyone has been telling me that the pain I feel from loud sounds isn't real. I'm "overreacting." I need to "get over it." It's "not that bad." And I'm just now realizing how much psychological damage this gaslighting caused.

(People with autism are not "overreacting" to sensory stimuli. We experience them much more intensely than other people do, and our reactions are appropriate for what we are experiencing.)

The therapist I saw in middle school asked me, "What's the first time you were afraid of balloons?" I said I didn't remember the first time, but one particularly early example I remembered was at Hannah's birthday party [names have been changed]. I didn't know why the therapist was asking me; it didn't seem like it would matter what the first time was. But I was a good little kid, always obeyed the adults, so I told her the whole story.

But now I know. There were assumptions behind her question. She was thinking about how a phobia is often caused by some traumatic experience involving some certain object, and then the person associates the emotions and the object and develops an irrational fear of the object itself- even though the object is pretty harmless. That's why she was asking- she wanted to find one traumatic thing in my past that had caused me to illogically believe that balloons could hurt me.

Nobody understood that balloons actually do hurt me, and that every single time it happens and nobody seems to care about my pain is a traumatic experience. Every. Single. Time. Is a traumatic experience. Even the "therapy" itself was just more of that- "relax, it can't hurt you" *pop* "see, that wasn't so bad." Gaslighting.

They wanted me to take deep breaths and learn to relax my body- not to cover my ears or brace myself against the pain. If I could hear the pop without covering my ears, that would be success, then I would be "brave." But I covered my ears and hid in the couch cushions, and they said okay that's fine for this time, we'll work up to it. And after I heard it pop, then I relaxed. Of course. Because the danger was gone.

It was just the same as if the doctor had hit me and told me I was "bad" for tensing up, putting my head down, trying to protect myself, and I needed to be "good" by sitting there "relaxed" with barely any reaction.

And then there was one time, where the doctor did pop a balloon in front of me and I reacted in a more "correct" way, probably I just sat there, looked a little startled, didn't say much or try to hide in the couch. And then in the car on the way home, my mom (who had been there too when it happened) really wanted me to tell her about how I felt. I didn't want to talk about it. I didn't want to think about it. At the time, I couldn't understand why. But now I know. My whole life, I've been looking for someone to acknowledge and care about my sensory pain. But "success" in the therapy meant accepting that no one cares, and being okay with that. On some level, I didn't want "success," and I was very uncomfortable with how I had apparently had the "correct" reaction and the adults thought it was so great that I had hid my pain and not asked anyone to care about me. I didn't have the word "pain" back then; there's no way I could have even understood what I was feeling or explained it to anyone. Especially because it sounds really bad to say I don't want to "get better."

(As I write this, it occurs to me that people who have a phobia of heights probably aren't told that they need to "face their fear" by jumping off a building.)

Let me tell you what would have happened if that therapy had "worked." (After a while we stopped the therapy, so it never got to this point.) It would mean me accepting the idea that nobody wants to hear about my pain, that I'm being bad if I scream or run away. My reactions are causing trouble for other people and it would be better if I could just shut up about it and accept that no one cares. Accepting that no one will protect me, and they will think I'm bad if I do what I need to do to protect myself. It would mean withdrawing into myself if I'm in a situation with balloons, not willing to speak- because what's the use of going along with the rules of socialization if none of these people care about me? What's the use of pretending everything is fine- I can't keep up appearances like that when I know they won't protect me, I need to protect myself. It would mean staring at the ground, emotionless, no smile, because the emotional trauma is so great, I'm not able to show it on my face without breaking down- and what does it matter if I follow the social rules about facial expressions and eye contact, it's not worth the trouble, no one cares about me anyway. I'm alone. Like a zombie; shuffle along, follow the rules, don't make trouble, suffer pain and accept the fact that no one cares.

But even though that therapy was just for a short period of time when I was in middle school, it did long-term damage to me. There were many, many occasions after that where I would go to a party, discover there were balloons there, and either leave immediately or leave after people started touching the balloons and I just couldn't handle it anymore. And every time I left, I felt like a failure. I thought, "It's so awful that this phobia has so much control over my life, I miss out on fun things because of it, if I went to therapy and worked on this, I could get better- so it's my fault." Every time, I told myself those things. I'm such a failure, it's my fault, I'm letting the balloons control my life.

And I internalized the idea that it's wrong for me to advocate for myself- to specifically take steps which a "normal person" wouldn't, just because of my sensory issues (for example, letting the host of a birthday party know beforehand that I wouldn't be okay if there were balloons). The whole entire reason behind that therapy was "you can't avoid them forever"- that it was bad for me to be active in protecting myself and communicating about my needs. Avoidance makes a phobia worse, the doctor said. Instead, I was supposed to "face my fear" because "you don't want to have this problem for your whole life, do you?"

If I didn't even make an attempt to "be normal," then I was "letting the phobia control my life." My desire to avoid balloons wasn't seen as a real need that should be taken seriously, but as a sign that I was weak and was inconveniencing other people because I wasn't willing to go to therapy and do the work to "get over it."

So that meant for as long as I could, I would pretend to "be normal." Go to a birthday party, notice that there are balloons there, pretend I'm okay with it, be jumpy and nervous the entire time, constantly looking around to see if anyone is touching the balloons, unable to focus on what's actually happening at the party or people trying to make conversation with me, just waiting for it to be over... until there comes a point where the stress is too great, where I can't keep up the "normal person" facade anymore, and I "freak out", which usually looks like suddenly running from the room. And everyone is confused about what's wrong with me.

What would it have been like, if I had known "loud sounds cause real pain for me, so I am not able to be near balloons" and treat that like an unchangeable fact of the universe? (The same way that people let you know they have a food allergy.) Not to be like "I have a phobia, and it's my fault so it's unreasonable for me to bother or inconvenience anyone because of it." What would it have been like if I could have communicated with people who were throwing parties, if I could have told them "Loud sounds are extremely painful for me, so if the party has balloons I won't be able to come"? But of course I couldn't do that. The doctor said avoiding the object of your phobia only makes the phobia worse.

What would it have been like if I didn't try to "be normal"?

The strategy I use now is to be very clear about what my needs are and communicate them to the people who need to know. And accept that it's okay if people don't know balloons are a problem- because, as it turns out, they are literally hearing the sound in a different way than I do. Tell them I can't be near balloons, use the word "pain" instead of "phobia", and be confident- not apologetic- because I have the right to have my needs respected, and I have the right to leave if I am in a situation that is not safe for me. When Hendrix and I are out in public and I see a balloon, I talk to him and make a plan about what to do. Usually "let's walk past it really fast." And I'm able to stay calm because I have a plan which takes my needs seriously, and because Hendrix supports me 100%.

My globophobia is caused by the unchangeable reality that loud sounds are extremely painful for me. I can never "be a normal person" around balloons. But the phobia part- the irrational fear- is because I associate loud sounds with "people don't care about me." And that's something that's completely in the realm of emotions, and can be completely healed through therapy. But healing doesn't look like "be a normal person." Healing from the phobia component means taking my sensory needs very seriously, and communicating clearly about my needs. It means knowing that I don't need to be afraid because I can rely on people who care about me to help me avoid balloons.

I'll always need to avoid balloons, but that doesn't mean I'll always have globophobia. Maybe someday I can avoid them without thinking "no one cares about me."


The Sound [strong trigger warning for globophobia]
How Are Autistics Supposed To Know Which of Our Pain is Socially Acceptable To Express?

Next week there will be a post on the intersection of globophobia and evangelical Christianity.

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