My oldest child is diagnosed autistic, I am late-identified autistic, and my youngest is coded for social communication challenges at school. We operate as an autistic household and do our best to participate in the mainstream world. I’m four years into advocating for my kids at school and one year into my own self-actualization journey, and I’ve learned that even when you are living an autistic experience, it is impossible to perfectly understand, or hold perfect empathy, for someone else. Nevertheless, the key not only to autism awareness, but acceptance, is to endeavor to try to understand as best we can.
Empathy isn’t a mindset or characteristic, it’s an exercise in actively seeking to understand other people’s experiences. Below are tips for people who work with, live with, teach, care for, or love someone with autism who’d like to grow empathy for them.
Take it one person at a time
The autism advocacy community loves the Dr. Stephen Shore quote, “If you’ve met one individual with autism, you’ve met one individual with autism,” as a way to describe the diversity of experiences around the autism spectrum. That’s because, while there are common characteristics, including traits you’d mostly likely be able to spot in a room full of autistic people, growing empathy for the autistic experience is best done one person at a time.
This doesn’t mean going from autistic person to autistic person and asking them to educate you about the state of autism today, but instead to notice with an open heart and an open mind how they are responding to the world around them, including you, without any expectation of what’s right, wrong, or normal.
The spectrum part of “autism spectrum” isn’t referring to a severity scale, low to high, it’s referring to an array, an assortment of traits experienced in different degrees by each individual. Autism also has a lot of co-morbidities relating to physical health and learning capabilities, which co-exist on their own spectrums, so the possible combinations of traits making up each person’s experience is vast.
Social media has its issues, but one very easy way to gain understanding of individual autistic experiences is to spend some of your social media time listening to autistic creators. Hashtags like #actuallyautistic and #autisticadult will steer you toward people with firsthand experience being autistic who are sharing their stories to form connections and grow understanding. The key word here is listen.
Think about your nervous system
Common characteristics for autism include sensory issues and needs, not only with the standard five senses but with things like feeling our bodies or sensing our physical presence in the world. The experience is most recognizable when your autistic friend is wearing noise canceling headphones in an otherwise quiet space, or when someone is so overstimulated they melt down. But just because you can’t see their experience of hypersensitivity to bright light, for example, doesn’t mean the overhead fluorescent lights in the office aren’t slowly sucking the life force out of your autistic colleague.
To grow your empathy for this particular aspect of the autistic experience, start with considering your own nervous system:
Start with your 5 senses — list one thing that gives you great pleasure and one thing that totally disgusts you when you see, hear, taste, smell, or touch it. Imagine or recreate those sensations.
Think of a time when you were perfectly at ease and list all of the elements involved, the location, people, time of day, lighting, whatever strikes you as contributing to that feeling of ease. Consider how incredible it was for all of those things to align for that perfect moment.
Think of a time when you were extremely overwhelmed and list the elements involved there. Try to put yourself back into your own emotional shoes in that experience.
Same thing for an experience of great pleasure.
The next time your autistic loved one is having a major sensory experience, like big joy or deep overwhelm, connect that to the feelings you reflected on that represented your highest limit of feeling and imagine it amplified and amplified again. For example, what would it be like if the thing that currently just grosses you out instead triggered your fight or flight response?
Imagine a world where the norm is the exact opposite of what you prefer
Lately, I’ve had a few different experiences with a type of person I’ll call “well meaning friendly folks.” Maybe you know the type, that upbeat extrovert who cannot possibly imagine someone would prefer not to talk to them, or wouldn’t like a good joke or a chance to meet someone new. They tend to be people who know exactly what brings them joy and just want to share it without discrimination, and either have no clue there are people who really don’t want it, or think people unlike them have something wrong with them that can be fixed with more of what they know is right to like. This mindset is often supported by the fact that what they love is regularly reported to be the norm.
Many of us do this to some degree when it comes to our preferences, whether they’re the norm or not. And many of us have experienced being made to feel weird or left out because of something we love. But for an autistic person, when the norm is a social expectation they are unable to fulfill, it can be a frustrating and isolating experience.
To grow empathy for differences in social experiences, try this:
Choose an element of your social life you love or loved — a club or sport, parties, getting to know everyone on your block — or a social personality trait you’re proud of or well-known for.
Imagine a world where what you love doesn’t exist, is frowned upon, or your trait is considered rude or annoying, but you can’t help but do it anyway.
Think of how you’d be treated, the ways you might try to hide or adapt your now weird way of being, imagine knowing that the norm is never going to change.
Be open to adapting your style
It’s easy to fall back on the idea that you are who you are and it is what it is. Or, to believe that you are making things better by helping an autistic person learn how to be more “normal” or toughen up or learn to get along. But believe me when I say most of the rest of the world is already working extra hard at fitting your autistic loved one into a very uncomfortable, often harmful, box. The expectation is most often for the autistic person to adapt in order to make everyone else more comfortable. Research has shown this kind of masking can have seriously detrimental effects.
To grow empathy and relieve the stress of autistic masking, be open to adapting your way of doing things to match theirs. That might mean using more direct language, hanging out together but doing different things, or making their safe foods without making a fuss about it. If you’ve been paying attention to their experiences, you’ll know just what to do.
If you’ve made it to the end of this article, thank you. It often feels like the greatest risk factor for autistic people is misunderstanding, something we can easily resolve if more people like you were interested in learning how to try.