Unless folks are personally immersed in the world of neurodivergence and advocacy, it is rare to find people who understand how to kindly, respectfully, and effectively interact with autistic individuals. I have found myself in the position of educating not only friends and family, but professionals, healthcare providers, and others. Honestly, it's exhausting. So to save myself future spoons, I figured it made sense to make a single post that I can easily refer people to. I hope this is helpful. Don't forget to click on the embedded links to get more detailed explanations. As a reminder, I am speaking from the perspective of an adult, autistic woman who has become very good at masking my autistic traits over the course of 4 decades (which contributed to a massive amount of developmental trauma and other really hard situations). I do not speak for every autistic individual.
Let's start with things not to say when somebody tells you they are autistic.
As far as perceived communication "deficits" go, here are a couple more things to check out:
- Autistic peer-to-peer information transfer is highly effective
- Milton's double empathy problem: A summary for non-academics
I prefer Identity-First Language, not Person-First Language. I am an autistic person, not a person with autism or a person who has autism. I am definitely not a person who suffers from autism. If you're not sure how someone prefers to be addressed, here is is a sure-fire way to know. Just ask.
I'll tell you what I do suffer from though. I suffer from living in a world where unkind people often take advantage of and bully vulnerable individuals. I suffer from sensory assaults on a daily basis - fluorescent lights, mind-numbing cacophonies of sounds, perfumes, fabric softeners, and so much more. I suffer from living in a state / country where it is incredibly difficult to access appropriate diagnoses and supports. (I had to pay $1500 out of pocket and drive over 6 hours to see a specialized neuropsychologist who was able to assess an adult woman and provide an accurate diagnosis). I suffer from years of internalized ableism. "Try harder. Suck it up. If they can do it, why can't you? Stop being so sensitive." Yeah, none of that is helpful and it is actually very harmful. I suffer from severe PTSD because I wasn't officially diagnosed until I was 40 years old which made me more susceptible to all kinds of abuse. I didn't realize just how different my way of being in the world was and that it made me so very vulnerable. I suffer from anxiety that comes from... well countless sources. I suffer from the effects of a lot of miscommunication and misunderstandings, living in a passive, midwestern culture where people often don't actually say what they mean. Did I mention, that my autism does not affect me mildly?
I will continue to add to this post, which will undoubtedly get much longer, but this is a good start. Here are some Facebook pages, in addition to my own page, The Autistic Acupuncturist, that post a lot of good information on this topic:
- Kristy Forbes – Autism and ND Support
- Neurodivergent Rebel
- Trauma Geek – Trauma and Neurodiversity Education
- Neurodiversally Unbroken
- Not Another Autistic Advocate
- The Autistic OT
- The Neurodiverse Woman
- Hello Michelle Swan
- Autistic Not Weird
Did you know that it is a complete myth that autistic people don't feel empathy? In fact, some of us are so empathetic / empathic, it hurts, literally. After my official diagnosis in adulthood, I told someone fairly close to me that I am autistic, and her response was, "Well that can't be right. You have empathy for others." While the details of why that is an ignorant statement and is definitely not a compliment are for another post, my point is that it is widely believed that autistic people don't care about others or can't understand other peoples' emotions.
Let's talk briefly about different kinds of empathy. Cognitive empathy is about taking another person's perspective into account. It has to do with logically understanding someone else's feelings or perhaps being able to imagine what it might be like to be in another person's situation. I have also seen it described as the ability to understand what another person is thinking or to understand why they are feeling what they are feeling. Affective empathy (or emotional empathy) has to do with feeling what some one else is feeling - for example, crying in response to another person's tears or hardship. You've moved from objective cognition into having a shared emotional experience. Another form of empathy is somatic empathy. This is having a physical, bodily reaction to what someone else is experiencing. If you see someone get hurt, you might get a twinge of pain as well. Or if somebody in the room is angry or embarrassed, you might have similar physical feelings in your own body as to when you are angry or embarrassed.
While I would never presume to speak for all autistic people (of course we all have our own personalities, traits, preferences, skills, etc.), in groups of autistic people such as online forums, support groups, and the like, I have often seen a lot of discussion about how cognitive empathy can seem a lot more difficult and emotional empathy often comes naturally - even, to the point of being completely overwhelming or disabling because some of us can't turn it off. When I was a teenager, I worked really hard at turning it off which often made me come across as cold and uncaring. But, I didn't know what was happening and that was the only intuitive coping tool I had then - the only alternative I had to being completely dysregulated and in extreme physical and emotional pain all the time. It can be really unsettling to always feel what others are feeling without a filter.
Another topic we can throw into the mix here is synesthesia, specifically, mirror-touch synesthesia in my case. Synesthesia is an experience of the information that is picked up by one of the senses, being felt or expressed through another. A simple example is something like a sound having a particular taste, smell, or color. The senses sort of blur together. Over 60 types of synesthesia have been documented. I experience several forms of synesthesia, but one of the most challenging (and coolest) is mirror-touch synesthesia. (Check out this link for a short YouTube video with a good explanation of mirror-touch synesthesia). In essence, I physically and emotionally feel what other people around me are experiencing. This is one of the primary reasons why I need actual recovery time from interacting with humans.
It is not restricted to humans either. I can get these sensations from being near plants, animals, and bodies of water. I often walk into a place and pick up a kind of emotional residue from people who have previously been there, who aren't even in the building anymore. I feel things in my body from inanimate items that simply look heavy or sharp or from things that are moving in a particular way. Just looking at certain textures can create sometimes overwhelming physical sensations. In addition, I am extremely sensitive to fragrances, certain kinds of lights, medications, foods, the qualities of people's voices, and so much more. It is both a blessing and a curse and keeping my environment nervous-system friendly is a full-time job. Some days sensory sensitivities are overwhelming and exhausting and sometimes they're awe-inspiring and interesting. I mean, who doesn't want to be able to tap into their own innate LSD-like abilities, haha. (That's what I started calling it when I was around 16 years old). Really though, it's not all fun. It can be really, really hard. With as many challenges as this way of being in the world can present, I do know this. If there were a magic pill to get rid of it, to be "normal," I wouldn't take it because this is a core part of how I experience the world. These unique perceptions and experience have made me who I am.
It was probably because of these extreme sensitivities that I was naturally drawn professionally to working in the world of subtle things - bodywork, energy healing, acupuncture, and somatic therapies. Before I had names like synesthesia for the things I experience, I always just knew I was very sensitive to energy and many other things like lights, scents, movement, and sounds. Like many autistic people, I have a sensory processing disorder so my nervous system gets easily overwhelmed by incoming information that the average person subconsciously filters out. While I am not a fan of the word disorder, the point is that the modern world does not tend to cater to very sensitive people so we are the outliers, the "disordered" ones.
I hope this gives you a tiny taste of what it means to be hyper-empathic and to experience the world through these unique sensory experiences. In another post, I will discuss some of the personal and professional impacts of having highly sensitive neuroception. Other upcoming topics will include stepping into the rabbit hole of trying to filter out other people's experiences and feelings from your own, the question of identity, related vulnerabilities, the irony of feeling everybody else's feelings yet having big challenges with interoception, and how to create a supportive environment for the highly sensitive person.
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