Here\u2019s the graph. The columns don\u2019t directly correspond left-to-right since they\u2019re 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 \u201cHeightened anxiety\u201d on row 2 for autists is the blue bar carried over from row 4 of caregivers.<\/p>\n\n\n\n As you can see, caregivers under<\/em>estimated how their\u2026caregivees?…autism affected them in most categories, sometimes wildly such as in the case of burnouts (Autistic Respondents row 4). One instance that\u2019s 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<\/em> 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\u2019s probably happening is a communication gap in that allistics (non-autistic) aren\u2019t 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\u2019re 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\u2019t feel empathy in the first place.<\/p>\n\n\n\n (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\u2019t be judgy to the 14.76% of autists who reported lack of empathy)<\/p>\n\n\n\n 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 over<\/em>estimated as affecting autistics, rather than underestimating. They\u2019re also the traits people around us may be more likely to notice as a problem or inconvenience for caregivers to deal with. <\/p>\n\n\n\n Implication 1:<\/strong><\/p>\n\n\n\n I see three main implications from this, two of which I\u2019ve already mentioned.<\/p>\n\n\n\n The first is the importance of actually talking TO us about our experiences and what we need. Perhaps you\u2019ve heard the phrase \u201cnothing about us without us.\u201d 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\u2019t be enforced and the NT\u2019s enforcing the norms should actually be questioning why they assume their way of operating is the only acceptable one.<\/p>\n\n\n\n As you can see from the graph, other people don\u2019t fully know<\/em> what it\u2019s 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<\/em> to get it right. We\u2019re not all someone\u2019s 5-year-old nephew – there are plenty of #ActuallyAutistic resources and people out there you can consult.<\/p>\n\n\n\n Implication 2:<\/strong><\/p>\n\n\n\n We (and I include myself in this; it\u2019s 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\u2019s a lot of mental steps involved in things. For example, take a simple conversation (for this example I\u2019m assuming both participants can hear and are speaking aloud). You say something, I hear it, I respond; sounds easy right?<\/p>\n\n\n\n Well, let\u2019s 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\u2019s currently in half-worded thought form, and then speak those words with my mouth using the \u201cright\u201d tone, accompanying facial expression, etc. If I\u2019m 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\u2019t mean because my brain just grabbed random words that sounded nice together in a desperate attempt to \u201cget out the door on time.\u201d<\/p>\n\n\n\n If my response isn\u2019t what you expect and\/or want or seems to take a long time coming, and you haven\u2019t thought about all those mental steps involved in a seemingly-simple interaction, you might think I don\u2019t 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\u2019t 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\u2019t mean any of those things you assumed. (This isn\u2019t just a hypothetical, by the way – I\u2019ve heard stories of autistic kids with auditory processing delays being misdiagnosed with hearing impairments because people jumped to conclusions when they didn\u2019t respond to hearing test prompts fast enough.)<\/p>\n\n\n\n And this assumption that things are simpler than they are internally can result in the dismissal of people\u2019s struggles. If someone is getting something done, people assume they\u2019re fine and don\u2019t need support\/accommodations. But what they miss is how much effort<\/em> 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\u2019t 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\u2019ve 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.<\/p>\n\n\n\n Implication 3:<\/strong><\/p>\n\n\n\n And finally, I want to point out how the general public and practitioners are biased toward only identifying autism when someone\u2019s 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.\u00a0 Meltdowns, for example, aren\u2019t just something we do randomly (or a worse misperception, that it\u2019s a \u201ctantrum\u201d by choice or something we\u2019re doing to manipulate people) – they happen when someone has been pushed into too much distress.<\/p>\n\n\n\n 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\u2019t act like Sheldon Cooper, they may not \u201cseem autistic\u201d 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\u2019m working a job where the dress code is a problem, you wouldn\u2019t really know I had sensory issues in everyday life because they don\u2019t 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.<\/p>\n\n\n\n A couple notes before I sign off for the month:<\/p>\n\n\n\n![\"\"](\"https:\/\/www.writingforlife.net\/wp-content\/uploads\/2023\/09\/image.png\")
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