I make clucking sounds with my tongue when I’m stressed out, overwhelmed, anxious, or even excited. It’s unconscious and I only notice myself doing it if someone points it out or if I’m making so much noise that even I am bothered by the incessant self-generated noise. Despite my very low threshold and general propensity to be bothered by noises, the rhythmic and unconscious nature of this coping mechanism seems to prevent it from triggering an immediate knee-jerk “stop it!” reaction. Otherwise, its self-soothing function outweighs its self-aggravating effect! Either way, it’s not something that tends to bother me or be drawn to my attention because I’m often alone and Ben is unfazed by it or gracious enough to not constantly alert me to it. It does, however, become embarrassing and problematic in the company of strangers, especially those curious enough (and rightfully so!) to question me about it. Since I hate being called out publicly on being different, addressing someone’s question about why I’m clucking is a sure-fire way to rapidly send me into a self-conscious and anxious tizzy, further perpetuating the tendency for the clucking to aggressively continue. I’m happy to answer respectfully-phrased questions that clearly stem from a place of genuine curiosity or concern, but critical tones or hints of teasing or mocking usher in instant feelings of shame, guilt, and hurt. Being fair-skinned, my face flushes hot red, which sometimes further invites the comment, “wow! You’re so red!” I don’t find this helpful and I’m never sure why people feel the need to further draw the physiologic embarrassment reaction to the attention of the person who’s demonstrably embarrassed. For me at least, it just further escalates the embarrassment and makes me feel mortified!
I remember back to fifth grade when my teacher would constantly report my “bright red face” when I’d reluctantly raise my hand to answer a question or worse, be called on. I often had the answer, but I always preferred committing it to my mind rather than offering my response aloud because I was beyond shy and socially-anxious and hated talking in front of others, even my peers. Of course, meeting publicly announced comments that I was “so red!” when I was brave enough to vocalize my answer, was about as strong of a negative reinforcement as I can imagine in a classroom setting.
Much like mentioning that an embarrassed person looks markedly embarrassed further exacerbates his or her embarrassment, telling an anxious autistic person that they are “clucking” (or flapping, rocking, or performing some other form of repetitive behavior), likely makes them feel more anxious. Like a positive feedback loop, this can increase the frequency, intensity, or unconscious drive to further engage in the repetitive, calming behavior. At least in the latter, the comments are more likely uninformed and innocently curious, rather than (obnoxiously and unnecessarily) stating the obvious, as is the case with embarrassment.
My autism practitioner has educated me on the basics of repetitive or stereotyped behaviors characteristic of those on the spectrum. It sounds like they serve a sensory-stimulating function, and the behaviors themselves can be auditory (like my clucking, or humming, snapping, etc.), visual (such as rapid blinking or hand-flapping near the face), vestibular (rocking, swaying), or involve taste, smell, or touch. I have some behaviors in a few categories, but the clucking is the most ostensibly noticeable. Lots of people move, rock, jitter, and sway, for example, so these are less “incriminating” and attention-grabbing than loud and rapid tongue clucking.
I’ve unsuccessfully tried extinguishing the repetitive behavior, particularly when someone points it out, but as mentioned, I’m largely unaware of it and it seems like my brain and body’s deep and untamable drive—something that no amount of training and concerted effort can reprogram. So, to the older lady who rudely calls me “Tourette’s girl,” I don’t have Tourette’s Syndrome, not that by saying she “rudely” calls me that is meant to imply there’s any shame in having Tourette’s Syndrome. (I don’t know a lot about Tourette’s Syndrome but I’m sure that many people with that condition suffer in ways far more severe and I wouldn’t want to discount or disrespect their challenges.) What I mean by that reaction to the nickname she’s ascribed to me is that I find it rude that she is judging me or “diagnosing” me with any sort of difference. Even if she understood that this type of repetitive behavior also presents in autism and fairly called me “autistic girl,” I would still take offense and find her comment equally disrespectful. People are people. They should not be called or categorized by their diagnoses, health conditions, or disorders. I’ve told this lady numerous times that I don’t have Tourette’s Syndrome. The first time it came up, she asked if I had Tourette’s. I told her no I did not and asked her if she did, as I didn’t know why she was asking me since I was unaware of the clucking. I figured maybe she had it and wanted to meet other people with it and make friends. She laughed and said, “no, of course not! Why would you even ask me that?” (as if it was an appalling question). Mind you, I took her question to be just as random but I tried to answer it honestly and respectfully. I replied, “Oh because you asked me so I figured maybe you did.” She said, “uh, yeah but you do!” I was completely baffled by that response, but with my husband’s interpretive assistance, it sounds like she was still insinuating that I do, despite my honest confirmation that I don’t.
After the initial interaction and response, I misunderstood her chiding reply, so I asked if she wanted to be friends with me. She laughed but didn’t verbalize a reply. At the time, I wasn’t t sure what that meant either, but now that I better understand that she was mocking me, I’m relieved that we aren’t friends. I don’t need a toxic person bringing me down. Although I am keenly interested in forming local friendships, I’m not so desperate as to ever want to associate closely with someone who finds it acceptable (or funny? I honestly still don’t understand her motive) to make fun of others. Weeks later, she still finds it acceptable to call me Tourette’s girl when she sees me. I’ve politely reminded her several times that I don’t have Tourette’s and she can call me Amber. For a while, I still tried to pleasantly greet her with a “good morning” or “hello”, but frankly, now, I’m ashamed to admit, I just try to ignore her. It hurts my feelings that she won’t call me by name or drop the name calling, so I prefer to not pollute my self-esteem and mood by associating with her. Fortunately, she seems to be quite an exception to normal human decency and acceptance. Even less-than-pleasant comments about some of my oddities from other people are never as consistently disrespectful and borderline nasty. In fact, I’ll continue to strive to maintain an open mind and a less sensitive reaction when confronted with questions about my sensory stimulating or otherwise “autistic” or confusing behaviors. I’ve set the goal to be a beacon of awareness and promoter of acceptance and compassion towards those with autism and other mental and physical health challenges. Sometimes, what feels like a pointed or pesky question can lead to an informative dialogue and the chance to disseminate correct information to educate others. I’m more than happy to put my ego on the line and engage in any such conversations, as long as the intentions are good.