When My Autism Leaves Me Tongue-Tied

My presentation of autism does not often render me unable to speak. Although, admittedly, I struggle with oral communication and am a much more fluent and comfortable writer, I did not have language delays as a child, and I am fully capable of talking in most daily activities. It turns out that it can actually be somewhat common for usually verbal (or even loquacious!) autistic people to have periods or situations where they can’t speak for one reason or another. I had no idea. Indeed, this happens to me somewhat regularly, particularly when I am scared or anxious or shy.

The emergence of this behavior always frightens me. When my ability to verbally communicate is swallowed, I feel powerless. Our world is not always set up to facilitate nonverbal communication. This makes me feel like I’m at a dead end when I’m in a situation where I’ve lost my voice. Sometimes, I’m not even aware this has happened. I just stare stunned, nearly catatonic, blinking, perhaps nodding (if I’m lucky), otherwise, just like a puppet crafted without a mouth. The world moves around me and I feel like I’m standing still, the central axis pole of a merry-go-round with all the people and horses, music and lights bobbing up and down with carefree purpose around me.

Sometimes I just watch in awe, oblivious to my non-participation. Other times, I feel like I’m my own statue in a wax museum, standing in a soundproof glass case around the action. The walls are sometimes a one-way mirror: I know people can see me, but they can’t hear me; or other times, I feel like I see everything but I’m concealed to the masses. When I’m aware that I’m in this state, I feel like a scared child. I want to tuck myself into a ball and be carried away by a parent to safety. I want to be hugged and shielded. I become afraid I will not stand up for what I want, or especially for what I need. Perhaps it’s my trauma background, but I sometimes get anxious that I’ll agree to things I don’t want to do. I’m not specifically referring to physical/trauma things, but less severe things that I still don’t want to do. It’s happened before: I’ve silently agreed to job offers, plans or commitments with others, giving people things that I didn’t want to part with, helping people in situations that seemed unsafe because they asked for help. A small shrug or nod “yes” seems to be a defense mechanism when I’m stunned or overwhelmed and can’t talk, even when I don’t want to agree.

One frequent situation in which this side of myself decides to assert herself (which is ironic because in doing so, she prevents me from being assertive!) is during medical appointments. No matter how much rehearsing or memorizing I do, outlining or even scriptwriting I bring for reference, or how much I’ve had to say about my issue prior to the appointment, it’s like I’m suddenly a nodding, shrugging and otherwise single-word utterance speaker. I think the stress of the appointment, the sensory overload of waiting, the pressure when it’s finally time to talk swallows me in a wave of stage fright, and the concern that my problems will suck up too much of the doctor’s time (I hate to be the reason others have to wait even longer) all combine in the least helpful way and transform my typically communicative and expressive self into a shadow.

While thankfully doctors usually have their patients’ best interests in mind, so it’s not like I end up agreeing to something counterproductive, I often fail to get my questions answered, which leaves me anxious or uninformed. I think it’s important to continue to strategize how to handle appointments or other situations that cause this issue, so that I can have the best possible outcome, and feel confident, safe and empowered.

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