Autism Acceptance: Day 27
TL/DR: People with Autism are supposed to lack empathy, but that may not be as simple as just that...
TL/DR:
So, it’s day 27 of Autism Acceptance Month, and I haven’t written for a week and a half. I apologize for that, but my dog Leo was having a bad few days, and my focus was entirely on him during that time. However, Leo started doing much better. He’s back on a downward track, but I hope that it’s just due to our moving back into colder weather patterns.
Today I want to talk about how those of us on the spectrum see other people, and the problems with using limited or lack of empathy as a diagnostic criteria for identifying someone on the Autism Spectrum.
I always had difficulty when people around me were exhibiting strong emotions. I never could understand why someone felt the way they did, and in many cases, I usually had limited emotional responses to the things they were reacting to. I had the ability to feel bad FOR someone, but rarely felt bad along WITH them. So, I was able to show and express sympathy for someone, but empathy was completely lacking. When I got my diagnosis, it helped me understand why I rarely felt the same as other people when they were upset. Easy, right? Either you can do one but not the other, or you can do both (or sometimes neither – but I always viewed those people as sociopaths, because who couldn’t feel bad for someone who was having a difficult time? There must be something really wrong there!). Imagine my surprise when I found out that, despite my brain’s desperate need for things to be black or white, it’s actually much more than that!
There’s actually two different types of empathy. The first is called cognitive empathy. This is a person’s ability to use facial and nonverbal cues to identify how others are feeling. The current theory is that people with autism struggle with this kind of empathy since when we interact with others, we tend to focus on the periphery of the face and avoid the eyes which express dizzying amounts of information. I agree with this to a point. When speaking with someone, I tend to focus on their mouth as they are speaking. That way I don’t get overwhelmed with all that their eyes are doing and “saying,” and I can focus on the words they are using. The second type of empathy is affective empathy. This is a more involuntary way of getting the emotions of others since it is based on instincts and responses to those emotions. For example, when a baby cries, other babies nearby will often also start to cry. This isn’t because they are experiencing the same emotion, it’s just the instinctive response built into humans over generations. People with Autism often experience this type of empathy, and when they do it is usually exponentially more intense.
Finally, there’s not only the ability to feel for or with someone else, but then there’s the ability to understand one’s own emotions. There is a neurological condition called Alexithymia. This is an inability to identify and explain emotions that one is feeling themselves. This is an area that I struggle with. Because I had such extreme emotional reactions when I was younger, I learned techniques to temper those emotions that I reacted most strongly to. As a result, it takes a lot for these emotional responses to be triggered, and I often can’t tell that I am feeling sad or angry until they literally burst out of me. And there was a 2018 study that found that people with Alexithymia have a harder time expressing empathy, whether or not they are on the spectrum, and people on the spectrum without Alexithymia are better at showing empathy.
So, people on the spectrum often lack empathy. But there are two types of empathy. And people on the spectrum with Alexithymia have extreme difficulty showing empathy, even when they have it. This means that just like with everything else we know about Autism, everyone with Autism is unique in having and exhibiting empathy with others. However, this has resulted in probably many misdiagnoses of people, saying that they are not on the spectrum because they exhibit empathy, or putting people on the spectrum when what they actually have is Alexithymia. And, with our current mental health field being reliant on the DSM-5R, there doesn’t seem to be any remedy in sight. The American Psychological Association (APA), who publishes the DSM seems to be more focused on diagnoses that can be treated with pharmaceuticals. So, for example, in moving from the DSM-IV to the DSM-5, there was a major reworking in the sections for Autism and ADHD. Autism became impossible to diagnose unless it was occurring in a child’s early years, but ADHD became a more robust diagnosis. This is because of the prevalence of medications that are prescribed for ADHD, but that no medications can help with Autism itself (although people on the spectrum often have a number of comorbid conditions, like ADHD, that can be treated with medications).
My youngest child was diagnosed in middle school as having ADHD, and was prescribed meds for it. Four years later, they went through testing to determine if they had Autism as well (which made perfect sense – both me and my daughter were diagnosed with Autism and ADHD, and my wife self-diagnosed with ADHD). The agency determined that they did not have autism because when it was mentioned that the tester was interested in a topic, my youngest expressed interest in it, showing that they had empathy, and that was the major factor in the result – my youngest expressed interest in something the tester brought up.
So, I want to thank you for reading this, and hope you are a little wiser and more accepting for doing so. And I want to let you know that I will keep my writing free for everyone and anyone who might benefit from reading it. If you are getting something out of what I write, please feel free to share it with others. I would love for my experiences to help others navigate their own paths, and the more people you share it with, the more people that can benefit from it. Or, if you are not subscribed and want to get notified when I post, just hit that “Subscribe now” button above. Anyone can get a free subscription, and I will never put it behind a paywall. However, if you really like my writing, or get important information and are learning from it, you can always get a paid subscription. It’s always nice to be able to stop while I’m out for a coffee, and if you become a paid subscriber, I might even start a donut habit in your honor.
But, no matter if you’re a paid or free subscriber, or just passing through, I want to say this to you:
Again you teach me something very specific. Can’t say how much I appreciate this. You are doing great work!