Hello my Zebras and Spoonies! Thanks for coming and visiting with me today. I’m glad that you are here. Today is my third installment for the “My Diagnosis” series. Today I’m going to be talking about my experience with Autism and how those symptoms have impacted my life.
There are many things that I cannot put into a box. There are many areas of grey between my diagnoses. Some are predictable and some are surprising. The fact that my ADHD, Autism and OCD cannot all be neatly separated is not really surprising. I have sensory seeking and avoidance behaviors. Hard to say if this is driven by the ADHD or the Autism or maybe both. I have social difficulties which all three contribute to in their own way. I have executive disfunction and I don’t know if that’s more the ADHD or the Autism or again maybe it’s both. I have obsessive interests. Well, that can be from any of the three. Because getting into a hyper focus is part of ADHD and having obsessions is what having OCD is all about. So, who knows. Some other symptoms that fall into the grey? Insomnia, emotional dysregulation, stimming, anxiety, depression and body focused repetitive behaviors. There are even symptoms that overlap with my physical disorders that lead me to wonder how much of this is a mental illness and not just another part of my body’s complete make up.
Of all my diagnoses, I find that pinning the symptoms of the Autism down is the most difficult. All the classic, adult female Autism symptoms are there. Yet, they all seem to overlap and live in that diagnostic grey zone. This is probably why I wasn’t diagnosed until later in life when I had a full neuropsychiatric evaluation done. Not feeling hungry. Is that because of my gastroparesis or because I have impaired interoception? Hating the texture of bananas is definitely a sensory issue, but could be from the ADHD.
So, what am I sure is from the Autism? Really it comes down to two symptoms. The first is that I cannot read neurotypical paralanguage. The second is that I have an impaired ability to recognize faces. Both of these really have significant impact on my social interactions and the way that others perceive me. It can be really frustrating because they are both something that I have no control over and they are not things that I can learn.
Paralanguage is the non-lexical component of communication by speech, for example intonation, pitch and speed of speaking, hesitation noises, gesture, and facial expression. This means that paralanguage includes everything other than the words that you are choosing to use. When I communicate with neurotypicals I feel like I am trying to dance with them to music that I am not able to hear. It is difficult for me to determine if a person is joking or being sarcastic. All of this makes it difficult for me to really understand neurotypical individuals. Imagine talking to someone and all you received from their communication was a speech bubble with their words. That’s about all I actually receive.
I have had many people try to teach me how to read paralanguage. But the reality is that this is much too complex for that. Saying a smile means someone is happy is simply incomplete because people frequently smile when they are trying to mask their sadness. People cry when they are really happy or when they are sad. Yelling can be excitement or anger. Context of the communication is a major factor in the meaning of what is being said. I never receive much of that context.
Because of my inability to read paralanguage, I cannot readily gauge the emotional state of others which leads many to believe that I have no empathy for others. This is not true. When I am given the information surrounding a situation, I am completely capable of judging the emotional responses that those circumstances would likely generate and am completely capable of feeling those emotional responses if I intellectually immerse myself into a situation. If I think about the nurses that have been taking care of COVID patients during the surges of cases and I think about how many people those nurses witnessed die, I can comprehend the emotions that they would feel. If I dwell on it and think about being there, making those choices and seeing those people die, I actually feel the sorrow, the helplessness and anger. I am capable of understanding and relating to the emotional states of others. Often on a deep level. But I am not capable of reading that emotion in your paralanguage.
This leads to a lot of frustration. I am often accused of being rude or lacking empathy due to this lack of being able to read paralanguage. This leads to a bunch of social anxiety. When I find myself enjoying a conversation, I often end up wondering if they are enjoying it as much as I am. Asking them isn’t that helpful since most people consider it rude to be honest when someone is being boring. This leaves me with this ever nagging doubt that I’m missing something and that I am failing to read the room properly.
I don’t have prosopagnosia or face blindness. I can recognize that people’s faces are faces and if within the proper context I can recognize individuals. But if I meet someone at work and then see them at the grocery store, it is unlikely that I will recognize them as being my coworker. This is true even if I have known them for years. Simply removing or adding glasses can make someone unrecognizable. I would never see Clark Kent and Superman as the same person. I don’t think their faces look the same. However, based on all the jokes out there, I gather that most people don’t find the addition of glasses to be enough to make someone unrecognizable.
This often puts me in the weird position of someone walking up to me or greeting me but me not having any idea who they are. I have found from past experience that people are offended when you declare that you don’t know who they are and often they believe that you are either lying or messing with them. So, I haven’t found that to be a very helpful strategy. Yet, it’s what people most frequently recommend that I try. What I have found to be helpful? Facebook. It allows me to see many versions of the person’s face in various settings and contexts. It is like practicing. I look at all their photos that are conveniently labeled as being them and I can build a profile for that person in my mind of what they would look like in other settings.
The other thing that I find is that I cannot describe people to you. Someone will come onto the unit and ask who the charge nurse is. I’ll answer. Then they will say that they don’t know who that is and ask me to describe them. I can’t do it. I won’t be able to tell you what color the person’s eyes or hair is. I will be able to tell you if they are about my height or if they are significantly taller than me, but that’s about it. I will be able to tell you what their gait looks like and if they have long fingers. But most people don’t find that useful for identifying people.
This often leads people to asking me how I do recognize people if I struggle with facial recognition. I can’t answer this. I listen to people’s voices and I look at other body features. What I have found is that I don’t find that masks impair my ability to recognize people. There is so much about a person that is unique to them that isn’t part of their face. I use those features. But this is often why seeing someone out of context can be such a challenge. If I have used your hair style as an identifier and you only style it that way for work… Well, that makes it harder for me.
These two things frequently lead me into awkward and uncomfortable social situations. Yet, I love people. I thrive on being around other people. But it is also exhausting because I am constantly struggling to make up for my inability to read paralanguage and I’m constantly feeling anxious that I should know the person approaching me. This is why smaller groups of people are much easier for me than large groups. I have a much harder time keep track of people in a crowd and can easily loose even people who are familiar to me when in a big crowd.
Because of these two things, I have frequently been socially rejected. People falsely assume they understand the reason for my unusual behavior and mark me as rude or arrogant. This is the way that my Autism has contributed to my RSD. I have received work evaluations that gave me perfect performance scores and then also included a note that my coworkers didn’t like working with me because I didn’t “fit in” or was “rude.” All my life, I have been told that my socially awkward self is not good enough. Doesn’t matter that I can save your life in the event of severe trauma. Doesn’t matter that I can make cool stuffed dragons. Because I can’t tell if your smile is a happy smile or not, I am not the type of person who is desired.
Sometimes, I feel like I am a two dimensional object living in a world with three dimensional beings. Because I am two dimensional, I will never be physically capable of perceiving that third dimension and that will forever set me apart from all those three dimensional creatures. When the sphere moves through a plane, a two dimensional perspective is only capable of seeing it as a circle that is first growing in size and then shrinking. But the reality is so much more complex. That’s how I feel when trying to socially engage with neurotypical people. I feel like I am watching that circle changing size and am trying to image what the sphere could be like without ever having seen one. I am aware that there is more to the circle, but that doesn’t help me see the sphere.