The Info People Are Missing When They Think About Autism

One of my favorite resources is the “Autistic Not Weird 2022 Autism Survey” – a survey which collected responses from 11,212 respondents, of whom about ⅔ (7,491) were autistic, about everything from preferred terminology to sexual orientation to what challenges we face in society.

There’s one graph in it that asks autistic participants about how autism affects them, and asks parents or caregivers how autism affects those they care for, and it’s rather revealing of three broader issues: the importance of prioritizing the voices of people who are actually living an experience rather than others talking about them, how often we fail to take into account the complexity and nuances of people’s internal experiences, and how we tend to “see” autism more only when an autistic person is in distress.

Here’s the graph.  The columns don’t directly correspond left-to-right since they’re arranged highest-to-lowest – for direct comparison, the gray bars underneath each one are the answers from the corresponding entry.  So for example, the gray bar beneath “Heightened anxiety” on row 2 for autists is the blue bar carried over from row 4 of caregivers.

As you can see, caregivers underestimated how their…caregivees?…autism affected them in most categories, sometimes wildly such as in the case of burnouts (Autistic Respondents row 4).  One instance that’s notable is empathy – a common stereotype is that autists lack empathy, but as we can see from Autists row 9, 70.55% of respondents actually reported intense empathy – a far greater number than the caregivers reported.  This is a good example of how people miss the complexity and nuance involved in things – what’s probably happening is a communication gap in that allistics (non-autistic) aren’t always communicating clearly enough to the autists in their lives when empathy is wanted, and/or not recognizing it when we show empathy because we’re not doing it in a neurotypical way, and so rather than recognize that there are several different mental steps involved between someone having a problem and someone else showing empathy in a recognized way, some people (obviously not everyone, but enough to create a stereotype) jumped to the conclusion that we simply didn’t feel empathy in the first place.

(I also want to point out that lack of empathy does not inherently make someone a bad person the way popular culture would have us think.  You can lack empathy and still behave in an upstanding, compassionate way, or be hyper-empathetic and use your ability to understand them to more effectively abuse someone.  Some of us DO lack empathy, and that fact on its own does not make anyone a bad person independent of behavior, so don’t be judgy to the 14.76% of autists who reported lack of empathy)

Other notable examples are meltdowns, restricted diet, academic learning difficulties, low awareness of danger, aggression, and lack of empathy.  These 6 (out of 39 total options) are ones caregivers significantly overestimated as affecting autistics, rather than underestimating.  They’re also the traits people around us may be more likely to notice as a problem or inconvenience for caregivers to deal with.  

Implication 1:

I see three main implications from this, two of which I’ve already mentioned.

The first is the importance of actually talking TO us about our experiences and what we need.  Perhaps you’ve heard the phrase “nothing about us without us.”  Unfortunately, this is a problem for the autistic community – neurotypical researchers study us and talk about us through a lens of trying to make us conform to societal norms, or making a failure to do so a tragedy, when many of those norms needn’t be enforced and the NT’s enforcing the norms should actually be questioning why they assume their way of operating is the only acceptable one.

As you can see from the graph, other people don’t fully know what it’s like to be autistic, and therefore are simply not the most accurate authorities on the matter, even if they have a front-row seat to it.  If you actually want to learn more about autism or what we want from people regarding behavior or accommodations etc., you need to actually talk to us to get it right.  We’re not all someone’s 5-year-old nephew – there are plenty of #ActuallyAutistic resources and people out there you can consult.

Implication 2:

We (and I include myself in this; it’s not a rigid autistic/allistic binary) need to do better at not oversimplifying things or jumping to conclusions, and at recognizing how much is going on beneath the surface.  There’s a lot of mental steps involved in things.  For example, take a simple conversation (for this example I’m assuming both participants can hear and are speaking aloud). You say something, I hear it, I respond; sounds easy right?

Well, let’s break it down: You say something.  My ears receive sound waves.  I have to process and realize the appropriate meaning of the soundwaves in a reasonably short amount of time, including incorporating data about your general communication style (e.g. how much and in what situations you tend to use sarcasm versus being serious).  Then I have to figure out how to respond to that meaning, which again includes incorporating data about your emotional state, communication style, etc.  Then I have to actually pull up the exact vocabulary words needed to express the response that’s currently in half-worded thought form, and then speak those words with my mouth using the “right” tone, accompanying facial expression, etc.  If I’m tired and have an auditory processing delay as a result, I get stressed because I know the silent pause between your speaking and my response is becoming long and therefore awkward, and then I automatically fast-forward the internal processing to focus on maintaining outward appearances regarding appropriate conversational flow, and end up saying something I don’t mean because my brain just grabbed random words that sounded nice together in a desperate attempt to “get out the door on time.”

If my response isn’t what you expect and/or want or seems to take a long time coming, and you haven’t thought about all those mental steps involved in a seemingly-simple interaction, you might think I don’t care about what you said.  Or that I had a negative reaction to it and was struggling to think of something positive to say because I was afraid of being rude.  Or that I can’t physically hear well.  You would assume hidden meaning or a physical issue without realizing just how many ways the process can break down internally that doesn’t mean any of those things you assumed.  (This isn’t just a hypothetical, by the way – I’ve heard stories of autistic kids with auditory processing delays being misdiagnosed with hearing impairments because people jumped to conclusions when they didn’t respond to hearing test prompts fast enough.)

And this assumption that things are simpler than they are internally can result in the dismissal of people’s struggles.  If someone is getting something done, people assume they’re fine and don’t need support/accommodations.  But what they miss is how much effort it takes to get the things done.  Two people may be completing the same tasks, but one of them may have to put in three times the effort as the other to do so, and because people don’t provide support based on external results, the constant high energy expenditure leads to them ending up in severe burnout in their thirties.  A specific example is something I’ve seen a lot of people with ADHD report: they needed support as a kid, but no one would believe there was a problem because they had good grades in school and people focused on the external results rather than how their well-being as a person was affected getting the results.

Implication 3:

And finally, I want to point out how the general public and practitioners are biased toward only identifying autism when someone’s in distress, or their traits are perceived as inconvenient or embarrassing to those around them, as seen somewhat in which traits were over-perceived by caregivers of autists in this survey.  Meltdowns, for example, aren’t just something we do randomly (or a worse misperception, that it’s a “tantrum” by choice or something we’re doing to manipulate people) – they happen when someone has been pushed into too much distress.

This can lead to autists being denied a diagnosis if they seek a formal one, because if someone is in a supportive environment that their traits work well in, and doesn’t act like Sheldon Cooper, they may not “seem autistic” to others.  For example, my sensory issues are unnecessary fabric on my body, the sound of velcro, slimy-chunky textures like jello, and certain metal scraping sounds, so unless I’m working a job where the dress code is a problem, you wouldn’t really know I had sensory issues in everyday life because they don’t come up in places like the grocery store.  As seen from the fact that there were 39 traits listed on the graph, ranging from stereotypical to inconvenient to neutral to positive (all descriptors as considered from public opinion, not necessarily my words), someone can absolutely be autistic without having meltdowns or being bothered by loud noises.

A couple notes before I sign off for the month:

  1. Source:  I highly recommend reading this, or at least whatever sections seem interesting to you, if you want to learn more about autism from an actually-autistic source.  It covers lots of the necessary stuff like preferred terminology, attitudes towards ABA, how many autists identify as disabled, rate co-occuring conditions like EDS and PTSD, etc.
  2. I’m not trained in any way in statistical analysis or the like.  When I say things like “significantly overestimated,” that means I looked at something on the graph and went “holy shit, that’s quite a difference” and felt a need to point it out, not that I’m operating off a numerical value for statistical significance.

Thoughts, opinions, disagreements?  Leave a comment!

3 thoughts on “The Info People Are Missing When They Think About Autism”

  1. “I also want to point out that lack of empathy does not inherently make someone a bad person the way popular culture would have us think. You can lack empathy and still behave in an upstanding, compassionate way, or be hyper-empathetic and use your ability to understand them to more effectively abuse someone.”

    Yeah, I very much believe this.

    Regarding the disconnect between the two groups’ answers, I wanted to point out that some of it could also result from autistic respondents overestimating the role of autism in their own experiences. For example, there may have been times that autistic respondents looked at a factor and thought, “Oh, I really struggle with that. It must be because I’m autistic!” Whereas their caregivers (who have a better understanding of non-autistic experiences) thought, “Oh, that’s normal. Everyone struggles with that!” And it can be hard to know who’s right, because no one can know exactly how it feels to be anyone else.

    1. Well spoken! I’ve sometimes wondered if autistic people think allistic people (like me) never have social anxiety. I have/do often, and I have to face my fears and come up with a way around any particular issue. The point is, it’s not either/or for many of those features. Which brings us back to the spectrum, and the importance of communicating individual experiences.

      1. That’s true too. It’d be cool if there were a third graph where the non-autistic caregivers (or preferably the non-autistic respondents who didn’t have autistic children, as that was a group in the survey too and would reduce the chances of the data being influenced by parents who are simply undiagnosed, considering the genetic element) answered the same questions about *themselves* or something like that, so we could have a comparison of which experiences are more likely to be autism related in addition to “this is about how many of us within the group have these traits.”

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