The One Where the Aspie Rants About Empathy and the Experts

I just finished watching an educational DVD that was supposed to provide “simulations” to help parents and teachers develop empathy for kids with Sensory Processing Disorders.

And now I’m annoyed.

A sampling of the simulations on the DVD:

  • walk toe-to-toe with your eyes closed to simulate vestibular dysfunction
  • search for an item in your purse with your eyes closed to simulate tactile dysfunction
  • do chair push-ups to simulate proprioceptive dysfunction (huh?)
  • play charades to simulate . . . I don’t even know what the point of that one was except maybe to give one of the participants the chance to make the brilliant observation, “I know that reading facial expression is so hard for kids with autism.”

Oh, the empathy! I feel better already.

I probably could have overlooked the poorly designed exercises and been happy with the tips I picked up on dealing with sensory dysfunction, except for two things. The class of occupational therapy students demonstrating the simulations giggled their way through most of the exercises like they were party games and at the end the instructor wrapped with, “Now that you have felt what it’s like to have a sensory processing disorder . . .”

To which I shouted back, “Lady, you have no fucking clue!”

The simulations on the DVD were the equivalent of closing your eyes for thirty seconds and then thinking you know what it means to be blind.

Caution: Stunts performed on a Closed Track by Expert Aspie

What would the simulations look like if someone who actually knows sensory dysfunction feels like designed them? If that someone happened to be an angry autistic woman who’s had too much coffee, they’d look like this:

Proprioception* dysfunction simulation #1: Welcome to class! Let’s get started with the exercises. As you go to take your seat in the classroom, miscalculate how far you are from the first desk in your row, catching your thigh on the corner of the desk and knocking your classmate’s pen and water bottle to the ground. When you bend over to help him pick them up, bang heads with him. Ignore his exasperated sigh and pretend that every single person in the room isn’t either staring at you or carefully avoiding staring at you.

Proprioception dysfunction simulation #2 (bonus take home exercise): Pick a morning when you’re late for work. As you get ready to head out the door, grab your coffee mug with enough pressure to get it off the counter, but not enough hang on to it. Curse loudly as it crashes to the floor in a mess of shattered ceramic and hot liquid. Curse some more as you cut yourself cleaning up the shards of ceramic (damn you, fine motor coordination).

Repeat daily. Let me know when you’re ready to start adding in the other 6 areas of sensory dysfunction.

Now That I’m Feeling Less Ragey . . .

. . . I’ll try some constructive criticism.

This DVD felt like a misguided attempt at turning SPD into an “experience” to build empathy in OT students. While the sentiment is admirable, I think the big danger is that once someone assumes they know what another person is experiencing, they stop listening.

Perhaps that’s why the creator of this DVD failed so miserably with the simulations portion of the program. If she’d run it by a few adults with SPD, I’m sure the exercises would have looked different. Even better, she could scrapped the simulations altogether and devoted that portion of the program listening to adults and children with SPD talk about what it’s like to have a hypersensitive tactile response or hyposensitivity to pain.

Yes, the instructor on the DVD has an OTR/L after her name. That makes her an expert in occupational therapy, not in having an SPD. A five-year-old with an SPD is more of an expert in what that feels like than an adult with a dozen letters after his or her name.

As someone who struggles with mild to moderate sensory integration issues, I don’t think it’s possible to create exercises that replicate that experience for neurotypical people. And if the goal is to create empathy for people with SPD, I think there are better ways of going about than a few minutes of engaging in a botched imitation of what it might be like to live with SPD.

Empathy is “the capacity to recognize what another person is feeling.” Nowhere in that definition is there a requirement to experience first hand through simulations what the other person is feeling. To recognize what someone is feeling, I’ve found it’s helpful to ask questions and listen carefully to the answers.

As exercises go, it’s a simple one.

And yes, this is the aspie giving advice on empathy. Go figure.

—–

*Proprioception refers to your awareness of the position of your body. You can find a great summary of what types of activities might be beneficial for improving proprioception and other physical attributes in children with autism at Physical Exercise and Autism fact sheet. You can find some examples of therapuetic activities for kids with SPD at Activities for kids with sensory processing disorder.

24 thoughts on “The One Where the Aspie Rants About Empathy and the Experts”

  1. This just makes me so angry. And you state it very well when you say “that once someone assumes they know what another person is experiencing, they stop listening.” They’ll do these silly exercises and then be like, “Well, that wasn’t so bad. I don’t know why those SPD people have such a hard time with this.” Yeah well.

    There is just no way to simulate what they go through. Empathy through understanding seems like the more logical and effective way. I know I learned much more through reading about SPD experiences and SPD website than I would have closing my eyes and walking toe to toe. And I still don’t understand nearly all of it. There is no way I will ever be able to understand what it’s like, no matter how much I try or how much I want to understand. (This is frustrated parent of SPD child coming through)

    1. Oh, that’s a great point about the exercises minimizing the invasive nature of SPD. Doing an uncomfortable exercise for thirty seconds is one thing but being bombarded with sensory overload all day every day is a whole other animal.

      I think that wanting to understand and making an effort goes a long way and even if you can’t know exactly what it feels like for your child you can sympathize and take a compassionate approach. That’s huge.

  2. I love this post! You literally had me laughing out loud describing what an angry autistic woman’s exercises would look like! You described so many of my mornings–right down to the bruise thighs, and the shattered coffee mugs. Those are the worse because now I am angry not only because I’ve made a mess–again–but also because my coffee is all over the floor. Even worse than that is when I go to heat my coffee in the microwave and didn’t realize how much force I was using to get it out. It’s lovely to have hot coffee hit you right on the head!

    1. Is it terrible that I’m laughing at the image of you whipping your coffee out of the microwave so hard it’s hitting you in the head? Because I do stuff like that all the time. I routinely end up with the front of my shirt covered in water and suds from a little too much enthusiasm while washing the dishes. 🙂

      So glad you enjoyed the “exercises” and can relate!

        1. Exactly. In addition to lots of swearing, I always try to keep a sense of humor. My husband has gotten to the point where he doesn’t even say anything, just goes and gets the vacuum cleaner when he hears me swearing. 😀

          1. Comment ages too late but the coffee stories made me giggle so much: for me the problem is putting the mug -into- the microwave. I tend to bang it at the opening of the microwave. With verve, to make it worthwhile. And the morning shower later on means dropping the bar of soap on average four times 🙂

  3. Of course I couldn’t let this one go, I would have been furious at that DVD! I have fairly severe sensory intergration issues, which makes everyday simple tasks challenging. Try showing when the water feels like shards of glass hitting your skin! Those exercises couldn’t possibly express what we feel like; furthermore, it couldn’t encompass ALL of the sensory issues that take place at the same time. Even if they could really experience one instance of sensory difficulty for several minutes, it still could not give someone the correct experience. They would have to experience them all at once! I’m going to be thinking about this all day, can you tell?

    1. I know, it’s so aggravating! And on top of them doing only one exercise at a time for a short time, I kept wanting to yell, “now try that while you’re having an important conversation or driving or working.” Because it’s not like we get to choose when to be bombarded by sensory issues or can turn them off when we’re “done.” Sheesh.

  4. To me, empathy, as you say, starts with real communication, with “tell me what this is like for you”. Which it sounds like wasn’t even on the OTR/L’s radar. Your examples paint a much clearer picture and seem like they would be easy for an NT to relate to, that a minute of role-playing SPD.

    1. I doubt anyone would want to give my examples a try. 😀

      Empathy is such a tricky concept but I really do think it has to start from dialogue. Otherwise we’re making assumptions about each other in ways that may or may not be correct and that seems like a recipe for failure.

      1. I know this is an old thread but I think it’s not that we aspies lack feelings of empathy but we have difficulties showing it in a NT non verbal fashion. I can visualize and put myself in someone else’s shoes and feel compassion and understand how they feel but my facial expressions and body language contradict how I feel on the inside. It angers me that people say aspies lack emotions because that is far from the truth. I have feeling and I get hurt feelings all the time from being accused of not caring about others. I feel as if aspies (at least myself) are cursed with a permanent “poker face” that only displays emotions when you’re feeling an extremely powerful emotion. Unfortunately for me I rarely have extreme joy worthy of a legit smile so usually I only show sadness or anger on the outside. I also seen your post about viewing old photos and I found my toddler pictures and I was always blank faced. I don’t have a single picture from my childhood where I’m smiling. There’s even one where I’m eating a Tootsie Pop and I look more pissed than happy to eat candy. I had to come to the conclusion that perhaps rather than me being ungrateful for the candy I was being overly protective of it or disappointed that I lost count of how many licks to the center or something like that… I know I have emotions and I can rationalize or have the kind hearted attempt to understand why NT’s behave and react to what I do. I do believe that even though some people do seek out to be “haters” and such that they must have something that bothers them and that is why they do terrible things. My boyfriend has told me that I’m too nice and forgiving and that I am good person and can beat the odds and negative feelings about myself that comes with the ridicule aspies get. And my boyfriend is a NT and sometimes doesn’t get it or understand but he tries to and that is why I keep going because most people gave up on me, even my own self, but he won’t let me give up. I think I am extremely lucky because I have found the perfect filter for my well intended blunt blurt outs and I believe that if more people like him took time to learn true empathy which is on an emotional scale they would discover aspies are totally empathetic but lack the neon sign of emotional display.

  5. I often sit in meetings of giggling professionals who are surprised that they cannot ‘connect’ with the person they are supposedly helping; they turn ‘failings’ into excuses and shift blame to the individual.

      1. As a slight tangent I am fascinated by the overlaps between AS, SPD and dyspraxia as I have elements of all three, but don’t know whether that is because I have AS and there simply is overlap, or if I have more than just AS… I’m still relatively new to all this and am enjoying learning. Thanks again for the review, I will avoid said DVD!

        1. I have elements of all three too and wondered the same thing. The more I learn about SPD, the more I realize how much of sensory experience doesn’t follow mirror most other people’s experiences. Definitely a learning process!

          1. I’ve been told that the labels don’t matter and my experience is my own, but my brain likes to categorise everything and have answers with such a strong drive that I can’t help puzzling over it!

  6. As an OT, this post is very humbling. You are so right, I can never re-create for myself the experience of what it feels like to be another person’s skin. I can however, listen and ask questions and clarifications. Understanding how a person experiences SPD is a little like being a detective, in one aspect you need to gather the “facts” (which sensory systems are being affected, how daily living is impacted, modifications and accommodations already in place etc). Anyone can be trained to gather information. The “art” of therapy emerges when the therapist and individual, through mutual trust and respect, co-create a plan of intervention in response to their unique needs and perspectives. I hope you forward your feedback to the creators of the DVD.

    1. Oh, that DVD. I was just a bit angry after watching it. I really wish someone with your approach had been in charge of producing it. The presentation was just so simplistic. It seems like a big part of SPD is the cumulative effect, which isn’t something that can be grasped from doing a 60-second exercise. Uh oh, I’m getting annoyed all over again. 🙂

  7. Goodness, this resonates. Turning corners wrong and banging into them and getting bruised, dropping things and cursing…that’s me. My hubby says he knows I’m up when he hears swearing. I regularly used to break things (and sometimes still do)…hubby used to say I watched too much Buffy and didn’t know my own strength. He has a great sense of humor and has helped me laugh off my awkwardness. Didn’t realize there was a name for it. He says I’m really a time traveller, and the rest of space is just a few degrees off, and that’s why my depth perception isn’t so good. 🙂

    1. There’s a lot cursing at my house. Especially if I’m doing anything in the kitchen. 🙂

      Your husband’s explanations are adorable. I like the idea of being slightly out of step with time. Great metaphor for how I so often feel!

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